Social Services, PAs and Direct Payments

I was having agencies through Social Services for about three years but in October i had my Social Services Assessment, Originally i lost my Care Package as Social Services descided that i didnt need it any more but i fought for four months to get it back proving that i did with letters from doctors, hospitals, assessments with Occupational Therapists, i did everything that the Social Services threw at me, it was really difficult.

I lost my going out time but i retained my personal care and they also gave me "respite" basically carers for when my fiance is at home as he works full time. I was given a personal Budget which i could use either for agencies or for a Personal Assistant, either with myself in control or with Social Services in Control.

I decided at this time it would be a good time to switch from Social Services Agencies which gave me no freedom to Direct payments and hiring a Personal Assistant.

Social Services refered me to the Independant Living Association and i was given an advisor, she ran through some stuff with me and they gave me access to their online database of Personal Assistants which i ran through and called lots of them, this was rather fruitless to be honest and after a week my advisor wrote up a job advert of what i wanted in a PA and put it on several job sites and then people emailed them to the ILA and the ILA contacted me with them which was much easier.

I had several interviews with people, my advisor was there on the first one which didnt go that well but the second one me and my fiance went ahead and did it without the advisor as she was unable to make it. The Person was brilliant and we hired her on the spot. She had been working for me for almost three weeks now and i wonder how i coped without her. Its so much better being in control i can add or take away hours as long as its within my budget. Admittedly there is some paperwork but you can get the ILA to help you and they can also do the payroll for a small fee which comes out of your budget i really wish i had done all of this along time ago!

I have been trying to work to sort out the mess that social services have caused in my life; i am now going to have to pay to go to a daycentre, either that or spend another day in my house.. well technically two as they have also stopped my going out on a friday as well pretty much causing me to become a virtual prisioner in my own home!

Luckily i had a small windfall in the fall of Payment Protection Insurance that allowed me to pay off my loan so i can use the money that i would have used for that to pay to go to a day centre. I have found one that is for much younger people than the one that i used to go to so it should be a much better experience and i will at least get to socialise for part of the week.

I started attending a local craft group which is not for the disabled back in novemeber i really enjoy going there there have been a few hiccups as they arent able to administer my morphine liquid and the disabled toilet isnt really that great to be honest but i have been finding ways around it as the people are really nice there. I am just trying to get out the house as much as possible and trying to give my fiance as much respite time as i can!

The process for direct payments is starting to become a headache, there is so much paperwork, i have called about 35 people on the Independant Living Association Website who are supposedly looking for work and not had much response, it is physically and mentally exhausting, apparently the next step; (my adviser tells me) is that they will put an advert out with my job description and have people contact me who are interested, so i will sit and wait i suppose now..

Social Services want me to have a Personal Assistant by the 12th but to be honest and according to my ILA adviser, its not going to happen but the Social Services woman said if it doesnt then i have to find an agency to do it in between until i find someone.. they are so caring.. i have been trying to find a back up agency for when my Personal Assistant goes on holiday or is sick.. well so far two of them have cancelled.. and have had to make other appointments... and the other one actually turned up today i was shocked and expecting another cancellation!

I am beginning to wonder if everyone goes through this! it seems such a headache!!

Its been a very long, very hard six months..

I had a gastric bypass in october which was a struggle to begin with, i couldnt sit up, i couldnt lay down i just couldnt get comfortable but that only lasted a few days then the fun started! I had four months of eating just baby food consistency mush! which was not fun.. i still struggle looking at mashed potatoes! I lived on potatoes, homemade soups, liquidized mince, angel delight (sugar free), jelly etc.

After the four weeks i could have softer foods pasta, rice. I had some toast but only nimble cardboard bread, it was a bit of a struggle but as i never ate sugar foods it didnt really effect me. Eating smaller portions took some getting used to and eating every few hours; that took alot of getting used to as well.

Some foods just really didnt like me, normal bread, beef and most foods with yeast in just didnt like me.. i am slowly starting to reintroduce them back into my diet but rare and overcooked beef still doesnt like me!

After the four weeks of soft foods ( 8 weeks after op ) i could eat "normal foods" with the exceptions.. obviously eating alot smaller portions and eating two snacks a day when i am able to, and also making sure i am eating enough vitamins etc.. we are eating lots of fresh vegetables and fruit and trying to get alot of our meat from the butchers.. my fiance is also giving me food in a bowl to make sure he doesnt serve too much. Occasionally i eat something that doesnt like me and i either throw up or it makes me ill in other ways.. but it doesnt happen that often now.

It has been six months now and i have lost 6 stone and 12ibs in weight which is pretty good i have an appointment with the dietian in two weeks time.. the last six months have been very stressful for me i have had two members of my family die... my uncle died in October and my great grandmother died last week.

I have also been having fun with the Social Services reassessments to do with the Social Services Cuts! It started in October when i was assessed by a worker from an agency who was working on behalf of the Social Services; she did an assessment.. well apparently they wanted to take everything away from me.. my care.. social aspects and meal help.. even though i cant get out of bed, wash, dress, make my own food etc.. but the assessment she did might as well have been on another person and i still wonder if it was! apparently i walk around the house unaided and cook all my own food!

Well i threw a paddy and asked for a reassessment i gave them alot of proof; letters from the hospital etc showing i cant walk without crutches etc, and i was reassessed by a lady from Social Services, this time they wanted an Occupational Therapist to come see me.. well she was brilliant.. she ordered a new bath board for the bathroom, a bath lift! a perching stool and some grab raids for the bathroom.. and she did an assessment which really helped.. well the Social Services lady this time apparently spoke to one of my "carers" who told her that i walk around the house without crutches.. i told her this was wrong.. and even got a letter from the agency saying it was wrong but she wasnt happy and wanted to investigate it.. it all took forever.. lots of forms and assessments had to be done. Well it didnt work out too badly in the end.. i lost my social aspect meaning that i cant go to the day centre anymore and i cant have a carer take me out, but i have carers to wash, dress, shower me and do meals also i can have them even when my fiance is home so he can have respite.

Also she gave us the number of a charity that might be able to help us as they do respite calls at a cheap rate so i might be able to go out after all but i would be able to pay for it.. also i found a local daycentre which is aimed at young people which is just about to open up but i will have to pay for it myself so i am thinking about going to that.

The amount has been set for the Social Services and i have descided that i am going to do Direct Payments as i will get more freedom and choice and more hours, Direct Payments means that i open a bank account and basically Social Services give me money to hire a carer to look after me so i am in control, there is a special company called the ILA which help you employ someone and they also help you do payroll and taxes. Its possible i may use the agency for when my carer is sick or something but i will choose my own agency.. its going to be fun choosing a carer.. but at least all the Social Services stuff is over and done with for now.. it was really worrying me.. it went on for four months! and the thought of my care going and that my fiance might have to give up work to look after me was really making me ill. :(

The Occupational Therapist is coming monday to show us how to use the bath lift and someone from the ILA is coming wednesday to guide us through the process but i have started some of the process myself i have already contacted the liability insurance people and set up a bank account so just got to see what they say and what the next steps are.. my dad and step mum have direct payments for their carers and find it works alot better with carers and that there is alot more flexability.

Changes...

I havent written in a while.. thats not because stuff hasnt been happening.. its because stuff has been happening but i havent been ready to tell the world..

Everyone knows i have fibromyalgia.. everyone knows i have hypermobility syndrome.. but not everyone knows that i am big.. as in very big.. this is a mixture of several things.. steroids... not having correct portion size for a large portion of my life (over the age of 16) due to stress factors.. and also in the last few years being unable to exercise.

For the last 18 months i saw dieticians and was eating correctly but was unable to lose weight.. eating two wheatabix in the morning, cupasoup at lunch time and a cooked tea time. We dont have crisps or cakes or biscuits in the house so i never snacked.. but yet my weight still crept up it was in the end detirmied to be lack of excercise was the reason for this.. as i am on crutches and a wheelchair and only able to stand with crutches for about 1-2 minutes at a time so ten mile hikes are out of the question!

Just before christmas after much desicion making we.. (being me and my fiance) decided that i wanted to go for a gastric band as that would help me lose weight.. I saw my General Doctor and she filled in the paperwork and in febuary i had a appointment at the local hospital baratric centre. I saw about 8 doctors, shrinks etc who knowing more about the subject than me told me that a gastric band would not be a good idea as gastric bands are better for people who are able to a) exercise and b) are over-eaters. So a gastric Bypass it was! I was due to have the operation in May but in the Pre Op it was found that i had MRSA and it took alot of testing, medicating and too-ing and throwing before i was " most people still think it was a mix up as i had to have three MRSA swabs, the first two were clear and the last one came back infected which is pretty bizarre surely all of them would have been.. oh well there was no arguing with them and had to go through all the treatment!

In July after all the all clears came back i went for another Pre-Op i hadnt actually gotten my hopes up that the operation was going to go ahead because of the screw ups previously but the tests came back clear and i am due to have my operation on the 11th of August 2011. At the moment i am on a carbahydrate free diet, i started last thursday it is suppost to help you lose weight before the operation and also to shrink your liver to make it easier and cause less complications during surgery.

I am not that nervous at the moment i am hoping it is going to help with alot of things, that it might make my asthma a bit better, it might help with my sleep apnea although it is possible that the sleep apnea is due to fibromyalgia or it being hereditary as several members of my family have it and not just being due to being overweight. Losing alot of weight is also going to help with my legs.. well i am hoping so i may find it easier to walk.. i may not.. i am not naive.. i dont expect the operation to cure everything and to be able to jump and dance.. i have had fibromyalgia quite a few years now and i was born with hypermobility i am still going to be screwed up.. even if it helps my legs a bit.. my hands.. arms.. back..feet.. migrains.. twisted shins etc are all still going to be there.. I am looking forward to losing weight and not having people stare at me.. blaming my weight for all my problems.. i am not stupid i know people do.

I had some of my medications changed today at my General Doctors as my stomach wont be able to process some of them.. and i will require daily vitamins as i may not be able to absorb them as easily..

I know the next few months is not going to be easy.. maybe eating for the rest of my life is not going to be easy.. for at least four weeks after the operation i am on "babyfood" style food.. then on food with some substance.. by christmas i might be able to eat properally but from then on only child sized portions.. but it will be worth it to be "normal"

I have the rhemotologist on thursday so will have to see if he makes any changes to anything.. wednesday is my birthday.. and on the no carb diet i am not allowed cake.. lol sucky.. oh well it will be worth it! I will just have to tell myself that!!

I haven't written in ages.. not much has been going on to be honest..

My toe.. on my right foot the one that was totally removed back in September/October time has started being a pain.. its been growing spurs apparently. I am going to have to have them removed surgically. Great! just what i need.

I had a bit of fun with carers back about a month ago. My regular carer which i have via an agency through "social service assisted direct payments" left.. Now Social Social service assisted means basically that i don't have to pay for my carers.. some people have to.. it is means tested, they look at how much money you earn.. how much savings you have etc and work out if you can contribute towards it. I don't and cant pay towards mine. Assisted means that i don't deal with the finances.. Basically everyone is assessed and given an amount of money depending on what their needs are and then they can choose if they want to deal with the money and hire someone there-selves or whether they want Social Services to deal with the money and have an agency. Well when my carer left, the agency told me they didn't have anyone who i could have per-mentally, eg every day so i would have to have random people wash and dress me etc.. i didn't like the idea of this so i thought about dealing with the finances myself.. as a few people i know do.. but then the agency heard i was planning to leave them and magically found someone! I had alot of concerns about dealing with it all myself for example what happens if you hire someone and they call in sick. At the moment with an agency if my carer is sick i just get someone else..it is all alot of hassle! So i have a new carer.. she is very nice and very good at her job :)

I am having an operation soon, i went for a pre operation assessment about a month and a half ago and had to have some tests.. one being for MRSA and they apparently found i have (had) it i had three swabs, the first two came back negative for it, the last one came back positive for it. Everyone.. my Doctor included said that its pretty impossible and chances are it is a false positive.. however i still had to have the treatment.. covered in pink goo daily and nasal cream.. yum yum.. i have had three clear swabs now so i am waiting for my general doctor to write to the hospital to re-refer me so hopefully i can have the operation soon!

I have been having alot of problems with my left hand recently.. I have always had tingling in both hands with the neuropathy and hypermobility.. both thumbs mostly numb.. well both little fingers went numb a while ago.. however my little finger on my left hand feels really odd.. the numbness has travelled down my hand to my wrist and across to my middle finger.. so four out of five fingers are numb.. with the little finger being the worst.. i have a really odd sensation from my little finger to my wrist.. like the skin and muscle is too tight and i cant move it properaly.. like my finger is being held in an odd position.. its hard to explain.

I haven't written recently.. alot of things are either up in the air so i dont know what is going to happen so there is no point in happening or not much is going on.

There are to be changes in DLA changing to some new benefit. People are to be moved from Incapacity to ESA Benefit with many people moved onto Jobseekers Allowance which is going to cause alot of problems for many. I am just sitting and waiting for my form telling me that it is time for me to change over. Even social Services Funding is stopping for anyone of middle or lower care needs! i have phoned Social Services and checked luckily.. or not.. i checked with them and i am higher needs so phew.

I awaiting the future of the Daycentre i regularly attend as its future hangs in the balance unsure whether it is going to to be kept as it is, closed down.. or turned into a place for the elderly..

As i said there is little to write with everything hanging in the balance.

My vitamin D is still not getting any better; i have to make an appointment to see the nurse to have an injection of Vitamin D. Surely it cant keep getting worse and worse forever its going to hit rock bottom at some point i suppose.. lol maybe it will go into negative figures!!

The injection I had for pain the cortisone one from my specialist in November didn't seem to work I have still been suffering alot from the pain in my leg and the trapped nerve, I have another appointment with him in March where hopefully he will be able to come up with some ideas, I don't know whether he did the injection in the wrong place or whether it didn't work.. it was only the second time I had it!

It is the Fibromyalgia meeting tonight which I am looking forward too, it was the awareness meeting last month and we had a "healthy" number of people I made a new friend and I am hoping he is going to come tonight he is in a similar position with his Fibromyalgia as me. Most people at the group are still walking easily or working.. my new friend has what I call "severe" Fibromyalgia and has to use a wheelchair very often and can not walk very much. I feel a little bit bad, feeling happy that there is someone else like me.. i know that sounds weird.

Total i got a call from my Gp my vitamin D level is even lower than its ever been, its 27 geez and after the "super vitamin D" i thought it was suppost to be sorted. She suggest i get sunlight.. and talked about injections again.. she said shes going to write to my rhemotologist to see if hes got any ideas.. oh joys i seem to have so much fun with my vitamin d level.

earlier this month we went to see my rhemotologist.. in about a foot of snow.. we were the only people there in the waiting room.. we travelled for an hour.. for a thirty minute journey but luckily he had turned up, five of his colleagues hadn't. We went mainly to get my cortisone injection because my right leg has been really really painful from the trapped nerve.. the knee pain i have got used too but the trapped nerve pain has been agony.

I have been getting itchy head recently its been driving me crazy, and dry skin, couple that with the ulcers in my mouth and my rhemotologist thinks I have Lupus.. and has done some blood tests.. that is how they found out my vitamin d is super low.. but the blood tests haven't come back from that yet.

I seem to have had alot of germs recently.. and have just had one of my sore throats and also a cold which I could have done without.. but it has been super cold.. and I have already mentioned the foot of snow! and its already threatening to snow some more.. well it did last night but it didn't settle. It might be a white christmas.. I just wish I didn't feel the cold so much.

Its the fibro groups christmas meal today I am wondering how many of the group are going to turn up in this cold.. and to be honest knowing how I feel I wouldn't blame them if they didn't turn up.. I feel like rubbish and ache like hell but I have to keep a smile on my face for my fiancé.

I have had a bad cold for the last three or so weeks hense why I haven't written.

Before I got sick I joined a local disabled swimming club in order to try and get some exercise and also try and meet some people, I don't get out very often only really to see my parents and to the local day centre. The only problem I have with this is my immune system isn't that great!

Also I have been very itchy the past 6 weeks.. lol sounds odd.. around my face and especially my hair ( I have checked for head-lice!!) and changed to a special shampoo.. I have been playing detective wondering whether I am allergic to the chlorine in the swimming bathes.. or possibly whether my new CPAP mask has Latex in it which I am allergic to (even though I was told it doesn't). I have a doctors appointment today and hopefully she will be able to help me.

I have also been helping out writing articles for the local fibromyalgia magazine on benefits and helping a little on a local forum with benefits although alot of people don't seem to have benefits problems at the moment.. I am hoping to keep busy.. although I have been feeling a little depressed recently but I have been trying to hide it as not to upset those who care about me.

The local day centre I attend is going to be changing and will be taking only severe brain-damaged and elderly.. and a few other people.. I doubt I will fall into the "few other" category so I am going to be left with very little to do.. I already feel a bit like a prisoner with the fibro and not being able to go out without a carer or simon. Apparently they are suppost to find new activities for us in the community but the list is thinks like badminton and creative writing not really things I can do or that I am interested in. I have started taking my own food to the day centre since I got gastroenteritis in September and I don't know where I got it from.. I don't want to risk getting it again. My stomach is still very sensitive and I keep getting IBS alot more than I used to before.

I accidently missed my appointment with my Rhemotologist because of my bad cold.. I phoned his office and spoke to his secretary and they will hopefully send out another appointment to see him and also another "sooner" appointment for cortisone injections as the pain in my legs is getting really bad again, I cant wait another six months that it will probably be till I see my Rhemotologist.

Just been on holiday in a static caravan at a holiday park. It's quite interesting when you book a caravan at a holiday park; you mention you want a disabled caravan and they add half or double the price on again, I think it should be illegal to be honest, surely it's against the Disability Discrimination Act. We managed to find a holiday park, well a company 'Park Resorts' that didn't add any extra to the price which was amazing. The adaptions were brilliant, everything was lowered for wheelchairs, there was a ramp, an adapted shower with seat, lots of grab rails, and a 'monkey bar' in the bedroom.

Also lots of holiday attractions offer disabled rated but some of them you have to ask about, call about, or book several days in advance. Disabled rates weren't always obvious or written on signs that showed the prices, it was worth doing research before we went.

I have just had my large toenail removed, I am having problems with both of my toe nails, I had part of my other large toenail removed about two months ago but it's having problems healing, I don't know if the toe nail problem or the healing is anything to do with my fibromyalgia.

The other thing I noticed both with my nail surgery yesterday and with my wisdom tooth surgery a couple of years ago is that local anaestic doesn't seem to work very well with me and even with the maximum dosage allowed I was still I'm ALOT of pain during the procedures. During me tooth I was told it was not pain but pressure but when you are on the verge of screaming because it hurts so much you know you are right, I took the teeth to be a one off... Until yesterdays toenail removal when it hurt alot. The pidatrist told me he could stop but I told him to continue. It is possible I have found that both my toe and tooth were infected so the anaestic did not bind to the tissue... Or it could possibly be due to the fibromyalgia I don't know...

Another thing which is really frustrating at the moment is all the talk of benefit cuts in the press..disabled people need DLA, well a large amount of them do and also people unable to work need ESA or incapacity... Playing with the figures or trying to force people to work when they cant is just going to cause alot of problems in the long run, we didn't cause the movement to over spend... For example it's the tax payer who is paying for the pope to come over to the UK, sure I am sure that is important money wise than the equivalent amount of sick peoples benefits!!

- Posted using BlogPress from my iPad

Neurologist

I saw the the Neurologist, headache specialist yesterday; it didnt go quite as i expected i think i had pinned all my hopes on some miracle cure.. after three years of constant 24/7 migraine i suppose its kinda of understandable.

I had some neurological tests done.. eg look at my finger.. shine a light in your eyes to look at blood vessels etc and take my history. he said that i had "constant daily migraines" which turn into migraines from certain triggers... apparently there are no medications other than topiramate which i am already on.

He did recommend Vitamin B2 (Riboflavin) 200mg a day as that can help migraines but that was basically it. No follow up appointments nothing else.. i was rather disappointed i should have learnt after three years of suffering of not to get my hopes up :-(

We bought some Vitamin B2 on the way home and i started taking it today but apparently it can take a little time to start working.. fingers crossed..

I don't think much else has been going on, the Wheelchair dept hasn't contacted me again which is a good thing.

I have got an appointment to have the whole of my right ingrowing toenail removed just after we come back from our holiday in September. I am still having problems with my other toenail on the left and had to have it quarterized last week..

My Vitamin D level is at about 72 which is still lower than usual but higher than it has been in a couple of years.. i think it was about 25 at one point. Those super vitamin D tablets seem to have worked even if my GP did get in trouble for giving them to me as they were £1000 a course!!

I tried to stand up to the wheelchair "engineer" several times but she didnt listen.. so i gave her a few excuses why i couldnt attend the meetings she set up and so far she hasnt rang me for another.. she might have got the hint.. i dont want a bigger wheelchair i dont want my life messed up especially when i fit fine in this one by all specifications.. weight wise and size wise.. *sigh*

I got news today that my neoprene gloves and working splints have arrived and i am going to collect them from the rhemotologist occupational therapist tomorrow i hope they got the right sizes and that they fit okay i have been waiting 6 months and have been getting very frustrated. I am not 100% sure of the reasons for the delay i know its something to do with the hospitals merging and some changes.

I have also been having alot of problems with my toes.. both have been ingrowing.. badly..they removed part of one about a month ago and they are going to assess the other toe on the 6th of august and probally wont remove part of it for about a month after that.. i was hoping it was going to be sorted for our holiday in september but i doubt it and to be honest i would rather have it removed after our holiday because it hurt quite a bit after the removal. Although it depends how bad it gets before hand i suppose.

I recently bought an ipad, they seem to be brilliant for people with disabilities, the touch screen means you do not have to move or bend your keyboard much when typing which has been great with me as my hands have been slowly getting worse what with the hyperflexion and neuropathy and also there are dictation programs that arent that bad as long as you talk slowly with them (they also post to twitter and facebook! as well as being copy and paste text)

Wheelchair

Tuesday i went to see the Wheelchair Specialist and got myself rather frustrated; i havent put any weight on since last time i visited i know i am about a stone from the weight limit of my wheelchair but the lady i saw last time said the chair could hold several stone easily over the weight limit.

The "wheelchair engineer" this time said that if you were anywhere near the weight limit you had to have a new wheelchair.. i am pretty happy with my current wheelchair the only reason i went to see the wheelchair people is because my back isnt being supported by my wheelchair!

She then said that there wasnt enough room either side of me so my "new" wheelchair would have to be bigger... BIGGER... geez this wheelchair is already 22" huge and i already have problems with some doors.. she didnt take into account the fact i was sitting really lazily and when i tried to move into my usual sitting possition she had a go at me... grrr

She said i was going to have to see a "Rep" about a new wheelchair i am hoping that he or she is going to listen to me.. if i have a wider wheelchair it is going to seriously effect me and those i care about.. its probally going to be much bigger and heavier and therefore much more difficult for Simon and probally my carer to carry. If its bigger it may not fit in our car as we bought our car to fit my current wheelchair... and also the new wheelchair may not fit through the doors at the day centre i go to.. also if it is very wide i may not be able to self propel... all because the "Wheelchair Engineer" isnt listening to what i was saying..

I was hoping that she was going to "switch" out the back on my wheelchair to a hard back with a built in cushion as i have seen alot of those at the day centre and at the fibromyalgia conference i went to recently.. but no she gave me a crummy cushion that ties on to my wheelchair... and pushes me forward making it harder for me to self propel.

I also told her i was getting pressure sores.. she said she could not give me anything for this as it would increase the weight on my wheelchair.. hopefully this means that i will be able to get one on my "new" wheelchair as at the moment i feel that she is ignoring a very important need!

On a good note.. my right hand is feeling much better since i had my injection it is noticably better than my left hand in which i didnt have the injection.. pain is less and movement is increased which is yay! i dont know how long it is going to last as my Rhemotologist said it could last 6 weeks to 6 months i am praying for the longer period. The injection site in my wrist hurt for about a week afterwards but i think that is because i walk on crutches when i am not using the wheelchair and i am putting alot of pressure on my wrists.

My trapped nerve in my leg is much better too.. i have hardly had any pain at all.. i have still got the numbness and occasionally have twinge at night time but its no where near as bad. I would defiently have the injections again

Rhemotologist

Today i went to the Rhemotologist, it was worth waiting the extra time even though i let him know i was unhappy about waiting it.

Had a full over fibromyalgia "joint" examination.. with a few extras which i assume were hyper-mobility.. sort of.. lifting my arm.. squeezing joints and bones.. does it hurt when i do this.. kinda thing.. he told me i have gone downhill alot since i last saw him, i was already aware of this.. technically fibromyalgia is not sup-post to be degenerative condition but alot of people do go downhill.. ask most of the people who suffer from it.. its just a label they put on it. Also with the hyper-mobility i suppose that doesn't help.

I was all prepared when i saw him came with a page of writing i called "situation summary" which explained what had been going on.. eg physio, medication, General Doctor, Rhemotologist Occupational Therapist etc gave a copy to him... which answered alot of his "questions" which as they do they always ask questions and as a fibro sufferer i remember about 10% of the answers! It also had about test results etc so he could be up to date as it had been 9 months since i had seen him.

I told him about my leg as this was the thing that was worrying me most, he said it was a trapped nerve but as i was in so much pain with it he gave me cortisone injection in the top of my thigh.. he said it should help with the inflammation and pain and would last anytime from 6 weeks to 6 months.. he also gave me one in my right wrist.. my wrist is still hurting a bit from the injection but my thigh seems okay at the moment.. its night time when i am sleeping the actual pain tends to happen most so we will find out tonight if its helping.

I also told him my migraine is still there and is still very bad, he said he will refer me to a "headache doctor" some form of neurologist to see if some form of medication can be found to help it, i am currently on topiramate and it is only helping very very slightly.

I should be going back to see him in 3 months fingers crossed if my appointment isn't canceled.. he asked for one 3 months away and the receptionist said they were full then however she called my Rhemotologist on the phone (in the next office!!) and he said he defiantly wanted to see me in 3 months.. making it sound i was important so i shouldn't get bumped again! so i am on a backup list.. and should get a letter in the post as we couldn't make an appointment there an then.

waiting..

Not much has happened recently i seem to be waiting for things... I am currently waiting for my Rhemology appointment next week and hoping that he is not going to cancel the pain in my leg that i want to see him about is still there and very sharp... it also burns at night and keeps me awake..i also want to speak to him about the hypermobility as i haven't had a chance to since he "diagnosed" me via the Rhemy OT.I had a blood test last week for my thyroid and Vitamin D but the chances are the results wont be in, in time for my Rhemy appointment as it usually takes three weeks.

I am also still waiting for my Working Splints with thumb guards from my Rhemy OT its been about 6 or so weeks now i need to ring her in a week and see how the order is progressing it has taken along time.. i rang her two weeks ago and she said there was no news.. it seems to be rather pathetic really but i cant really blame the Rhemy OT as she has been brilliant to me.

I have been having physiotherapy but it doesnt seem to be helping me that much i have been doing the exercises and they just get me very tired and i dont seem to be getting anywhere after about 4 sessions we have left it at if i want another appointment in the next few months for me to call her, i don't know if i will or not i just seem to be pulling muscles.

I am also waiting for a USB Medical Alert necklace which i ordered online which is coming from the USA, I think this is an amazing idea as you can store all your doctors letters, xray's, scans etc on the USB device and then if you end up being rushed into hospital they can access all the information; this is especially good if you have a condition that isn't that well known. The information is password protected and the necklace is engraved with your basic information eg name, date of birth, emergency phone number. The USB device is password protected and i assume you give the password to your next of kin (eg the person whose emergency phone number is on the device) The website i ordered it from is http://www.universalmedicalid.co.uk/ the only disadvantage because its from the USA it can take anything up to a month!!

The other thing i have bought which is brilliant especially as i have alot of problems with my hands some foam which you can put on cutlery,pens, toothbrushes, paintbrushes, etc etc to help you hold things if you have problems with your grip which is good if you have problems with fibro or arthritis. http://www.livingmadeeasy.org.uk/supplier.php?supplier_id=0000580&product_id=0005522 is where i found it the cheapest.. i bought a NDSi XL and it worked on the pen that came with that and enabled me to be able to play games on the Nintendo DS again! and do painting.. lol i sound like an advert.. but i only want to spread the word of things i have found that have helped me.

I have also got an appointment with wheelchair services as i have asked to see them as i have had problems with my wheelchair; on my current one i have a "soft" back made from material but when i sit in it all day like when i do at the day center i go to i end up with a very sore back and also when my backpack is on the back of my wheelchair if often hits me in the back so we are going to ask if they can replace it. Also my current wheelchair is very wide and we are going to ask if they can get me a smaller one as this one has problems going through doors..

The local fibromyalgia group i have been helping with and attending seems to be moving forward in leaps and bounds they are currently setting up a website although i dont know whether to post it on here as it would show where it is held.. at least it is moving forward though.. yay.

lots and lots

I went to the first FMA UK fibromyalgia conference last week.. from 23rd to the 26th April. It was amazing and very very exhausting; i am still very tired and slowly getting over it now. There were about 250 people there about 2/3s of them with Fibromyalgia and the other 1/3 were carers. There were 13 speakers (i believe) who spoke on various subjects relating to fibromyalgia ranging from sleep to advances in fibromaylgia.

My fiance was technically a member of staff as he helped out on the first night which was a race night and he also helped on the projector when needed. The speakers i went to were very informative. The beds were a little uncomfortable but at home i have a electric bed which raises my legs so anything from normal is uncomfortable. The food was very good and there was lots of it.

I made lots of new friends many of which i have been talking to on facebook so far. There were people of all stages of the condition.. wheelchairs, crutches and walking... undiagnosed and diagnosed, thin people and large people, people with every fibromyalgia symptom you could think of and not one of them was judged. Everyone knew how everyone else felt. When i went outside the night of the disco because my migraine was bad there was at least 10 other people outside suffering from migraines too

Everything was just amazing it felt like i was with a huge family that understood me, they are going to do two fibromyalgia conferences next year another in the same location next year and another one in Norfolk i hope to go to both.

Since my fiance started his new job he has been doing two long days a week (12 hour shifts) and i have arranged for carers to come for 30 minutes at tea time to cook me some food as otherwise i would not eat till after 9pm he also works every so often at weekends this has been catered for too, we tried weekends before and it did not work as the carers came all over the place. There timings seem to have got much better. For cooked meals at tea time i tried various ready meals for a while but the choices seemed rather expensive and somewhat limited so after some research i have decided to have some frozen “meals on wheels” style food delivered once a month from “Wiltshire Farm Foods LTD” http://www.wiltshirefarmfoods.com/?gclid=CMrlieLbmqECFUeZ2AodixnqPQ i get my first order on Monday i am a little worried what the quality of the food is going to be like; whether the mashed potato for example is going to be real mash or whether it will be “smash” which i don't really like. I suppose the only way i will find out is to try it. Also this is another thing that technically my Disability Living Allowance is for.

I have been having a lot of pain in my right leg which is worrying me; in December my right leg above the knee went numb and then i started getting “dripping hot” sensations on it after a while i started getting burning pains in it which got worse in pain so bad they woke me up in the night crying in pain. I have tried various creams including volterol gel but nothing seems to work that well.. now every so often when i move i get sharp stabbing pains as well so bad they make me wince as well as the other symptoms. I am quite worried and want to tell my Rhemotologist if he doesn't cancel the appointment at the end of may but i am starting to have little faith in him.

I am getting a little frustrated wearing the white molded resting splints which i have to wear 6 hours a day.. three hours on each hand roughly. Its okay when its on the left hand as i can still do things but when it is on the right hand i cant use my mouse so i cant use my laptop so i can only either sleep or watch a DVD or TV. I also have to wear them for bed and they make me sweat a lot sometimes so much that i get a rash. Some nights i wake up without them on because i have pulled them off in my sleep. The splints go from my fingers to almost my elbow. I am currently waiting for some special working splints which i can use to help me use my laptop, these splints also include my thumbs. They seem to be taking along time to order about a month so far from my Rhemotologist Occupational Therapist i have tried to ring her today but keep getting an answerphone.

I am getting on well with my Rhemotologist Physiotherapy the exercises i have to do aren't that hard although sometimes i have overdone them and pulled a muscle at the moment i am seeing my Physiotherapist once every three weeks as progress is slow i suppose.

I have not yet received anything from the Podiatrist about my legs/feet which turn outwards because of the hypermobility but at the moment i have an ingrowing toenail, my General doctor was going to refer me to a Chiropodist but said there is no point as i have already been referred to a podiatrist which can do the same job and take my toe nail off *Shudders*

On the 15th May i am going for another blood test for thyroid and vitamin D before i see my Rhemotologist.. if i see my Rhemotologist..

Money!

Just after i wrote my last entry (i was at my mums at the time) i recieved a letter from the DLA saying my money was sorted! £2100! Was already in my account too.. alot of it is spent..Fibromyalgia conference.. disabled holiday... credit cards and savings.. Yay finally got it.. i just need the confirmation letter which i need to keep and scan as you need it for alsorts..disabled parking.. bus pass.. etc Yay

Lots of Appointments

I haven't heard anything from the DLA yet about my claim but as its the 1st of April today i am assuming that they are not going to appeal against my win as "both sides" only have 30 days after winning a tribunal to appeal and as my Tribunal was the 1st of March its over 30 days. (http://www.dwp.gov.uk/docs/gl24dwp.pdf) I know people who had tribunals in January who are still waiting for their back-pay money and confirmation letter.

I started seeing the Rhemotologist Physiotherapist about 5 weeks ago and have seen her twice now she assessed me the first time and gave me some exercises and and also assessed me for some specialist crutches as my old ones were damaging my hands.. orginally she thought about giving me gulley crutches; i tried them for a few minutes but could not stand up properally with them as it was difficult to balance( http://www.theindependencestore.co.uk/images/AA8176.jpg Photo of one). In the end the Physio ordered some specialist crutches with a moulded anatomical soft grip (http://westons.com/acatalog/pr30082-bl.jpg Photo of one) I have been finding them much better with walking although my previous crutches had half cuffs and the new ones have full cuffs and i am finding them a little more difficult to use, especially when i am trying to stand up from the floor when sitting down or when i have fallen over. I am tending to use the new ones for going outside and my old ones for when i am inside as i don't want to end up stuck on the floor when i am alone if i have fallen down.

I saw the Rhemotologist Occupational Therapist yesterday which took along time.. i find her very helpful she sent me on a course to learn some exercises for my hands and yesterday she remoulded my resting splints as one of them was too tight on one side and the other was too loose. She also added some foam padding to a set of cutlery that we brought along so that it will be easier for me to grip. I have one set at one but another set is a good idea; i might leave one set in my handbag for if i go out around someones house for food or go out to a cafe or something as i am fed up of struggling to eat when i am outside and i never remember to take cutlery with me. Previously the Rhemy OT had mentioned neoprene gloves which are supposed to help improve your joint movement when you wear them for "working activities" such as using computer.. painting etc i tried them on yesterday but didn't get on with them as they were too large on the fingers and seemed bulky. They did help with mobility a little but got in the way too much.. when i tried to type because of the gloves i ended up knocking other keys too. We agreed we would possibly discuss them again in the future but leave them for now.

One other thing we discussed was "working wrist splints" these are a little like the flesh coloured splints but they are made from a softer material (at least the ones i saw were) and they also included the thumb holding it in position. I tried using these whilst using these on a computer and found that they held my hands in the perfect position for typing; although my thumb doesn't work correctly they held my thumbs over the space key (which is the correct key when you touch type) which if my thumbs do improve would be very good. At the moment my thumbs when i type kinda lay there useless. When i type a lot for example at the moment i get a lot of pain with the working splints they would be held in a position that wouldn't cause pain. I also hope they would be good for painting etc. After measuring etc my Rhemy OT ordered me a pair i am looking forward to these arriving.

I am so glad i am getting help now its really starting to make a difference.. also i am on Vitamin D tablets 1x50,000ui for 12 weeks plus my normal vitamin D tablets daily people are starting to say i look better.. i don't really feel better.. i am not sleeping that good at the moment. I just had to get a new pressure relieving mattress a Promat3 as i was starting to get pressure sores i am still getting sore areas and only had one small sore which i think is almost healed now.. my hips are very sore at night-time and when i lay down i have taken to laying down laying on my back but i am worried about pressure sores again on my sacrum which is where the other one is.

Motorbility

We finally got our new Motorability car its only two weeks overdue! i was really fed up of being stuck in the flat all the time. I will lose £200 of my Disability Living Allowance which is my mobility part but as i won my tribunal appeal i should get £280 a month for higher rate care instead of the £70 a month which i was getting for lower rate care which will make up for the car money really so nothing lost at the end of the day. Motorability cars are a really good deal for disabled people.. you get a new car for three years.. it covers insurance.. tax.. services.. any work that needs doing on the car.. wear and tear and also if the car needs any disability adaptations.. there are lots of other things too.. sometimes there are charges for certain things http://motorbility.com/index.htm

Hopefully the DLA will sort it all out soon with no screwing up, i called the Disability Living Allowance people friday and they said they hadn't even received notice from the Tribunal Service saying i had won the tribunal and its been almost two weeks!! it looks like its going to be a while before its all organized and i get my backdated money. The Motorability company should tell the DLA i have the car and that should sort that out.. its all risks of getting screwed up and its all likely to happen to me.. geez all stress last thing i need.. the man on the phone at the DLA said that sometimes the Decision maker for the DLA sometimes appeals the Tribunals decision which kinda seems pointless.. whats the point of the Tribunal in the first place if someones going argue against the result! i hope he doesn't argue against mine i have been through enough!

One thing that was really annoying yesterday i had a letter in the post from the ILA (Independent Living Association) asking me if i wanted to be put on a list for 30 days for the 'possibility' of getting a representative at my tribunal.. erm well my tribunal was on the 1st of march.. a little late.. sigh.. but oh well i did well without them..

Yay!!

Finally monday 1st March approached, the dreaded tribunal date... i only recieved the last "main" letter i needed on the friday afternoon! which was from my consultant so i called the tribunal services and they said bring it along.. then i asked if they had recieved all my other letters i had sent them about a week earlier (before their stupid deadline) by recorded delivery.. and they said they either hadn't got them or they had gone missing.. well according to the Royalmail website they had recieved them so they had lost them! luckily i had taken photocopies of them!

I didnt have an advocate with me as the Social Services Financial Services helper who helped me fill in the forms wasnt allowed to come with me.. apparently Citizens Advice arent allowed to provide advocates and apparently the Independant Living Association who usually provide advocates lost the local contract for free advocates from the 1st of Febuary (or March) i am not sure which is no use to me at all.. An advocate is kind of like a solicitor that goes along with you helps state your case and make sure that you say everything you need to say and that your rights are kept to.

But i was on my own.. well i had my fiance with me for support as you are allowed a friend/relative if you have any problems etc bathroom.. drinks or questions.. It was nothing how i expected it to be.. it was just a room.. when you expect a "Tribunal Court" you expect it to be all scarey.. but it was just a room.. with a table and the three people on one side and yourself and your helper on the other..

There was the Judge, a Doctor, and a Care worker, i was in the tribunal room for about 50 minutes in total. The Judge asked questions first about my history and general questions and then the Doctor asked lots of Medical questions about how my conditions stopped me doing stuff.. and then the Care worker asked me questions about care.. eg how much care i needed during the day.. night etc. There did seem to be alot of very specific questions eg how was your hands during september.. how was your legs during august.. which i found difficult as you dont remember how your illnesses are or exact parts of the body that are effected are during specific months of the year..

You must remember to relate everything to your worst day with everything with benefits or DLA which with fibromyalgia is easy as you get alot of bad days but i suppose could be difficult. I have alot of bad days, luckily i was having a bad day the day of the tribunal which probally helped in a way as i was a bit all over the place but my memory was bad..it does help that i have alot of other conditions other than fibromyalgia.. my hypermobility.. and lots of fibromyalgia conditions.. and that i have severe fibromyalgia.

So after 50 minutes of trying to answer questions my best and trying to push through the pain we were asked to leave the room whilst they made a desicion.. from what i understand sometimes they ask you to leave the room.. but if they cant make a descision there and then they can make it later and notify you by post. We came back in about 10 minutes later and i was told that i had been granted higher rate care on top of the higher rate mobility i already have. That it is going to be backdated to june and that it is indefient! I was not expecting higher rate to be honest i was expecting the middle rate and i sat there in shock pretty much with my mouth open like a moron going thank you as my other half wheeled me out!

So one battle over! it took long enough spent most of the afternoon calling people family.. friends.. medical people who had supported me.

Now we still havent got a car.. we were suppost to get a motorbility car last week but apparently it hasnt arrived now.. but now its not going to arrive to the end of next week.. and i have lots of appointments next week as i assumed i was going to have a car by then.. sigh.. i sort one thing out and another one comes along. I managed to whinge and get a courtsey car out of the garage for the weekend and they might be able to do something for one of my hospital appointments later in the week as i have to take my wheelchair.. gah it never ends! Not having a car is really effecting how much i can go out and i am beginning to get cabin fever!

I have a feeling this is going to screw my benefits again like it did before.

Postponment Denied!

Okay so i got a letter from the Tribunal Services yesterday who i wrote to asking to postpone my tribunal.. they denied the postponement as they think i will be able to gather all the information by the 1st of March.. They obviously dont know all my doctors!

I have managed to get a letter from my Rhemotologist Occupational Therapist so far outlining my treatment however because she "diagnosed" me and isnt a consultant the dianosis isnt offical till a Rhemotologist has seen all the test results and signed and agreed it all which obviously could take some time.. but at least i have that letter i also have a filled in questionairre stating stuff i can and cant do this is signed by her..

I also have a letter from my Social worker basically saying how much money i recieve from Social Services and saying that i need care and help otherwise otherwise i wouldnt be recieving the money..

I have also spoken to my Rhemotologist twice today and he is going to gather all my notes and write me a letter and hopefully officalise the diagnosis... whether its here in time is a different matter..

I am exhausted i think the DLA and Tribunal Service actually forget we are ill when they expect us to do all this "running around!"

fight for the right!

Okay so lifes got a little more complicated.. i havent just got fibro and all the stuff that came with it..

I went to an appointment to see a Rhemotologist Occupational Therapist on Wednesday and did some "tests" it seems i have hypermobility syndrome too its been confirmed. 9 tests on a "benton scale" or something you have to have three usually to have hypermobility have have eight of them.. almost nine.. so i have it pretty badly.

It also explains alot of things whilst i was growing up as hypermobility is a syndrome from birth. Apparently all the problems i had with my ankles and legs when i was growing up are part of it.. my eyesight. The "Growing pains" etc all part of it and also the fibromyalgia *sigh!* Slowly getting used to wearing the new resting splint which eventually i will have to wear at night time..

Lots of things are going to happen now i have had a special splint made for one of my wrists and hands to try till my next appointment month when they will see how its working and if its helping make one for the other hand and wrist.. they are also ordering some special gloves to help my hands when i am typing also i am being refered to rhemotologist physiotherapist to help with my hands and legs and apparently she will be able to get my some specialist crutches that wont hurt my hands so much.

Apparently other things in the pipeline are knee braces and thumb protectors.. sigh so much happening..

The bad thing is i got my date for my tribunal yesterday i have been making lots of arrangments and phone calls today i am trying to postpone it so that i can get lots of information from my doctors and OT RE the hypermobility syndrome as that might help strenghten my Disability Living Association Tribunal.. so been very busy and i am very very tired... really hoping they will postpone it!! lol been waiting so long for it to happen and now i dont want it to happen right now!! crazy!

Had chaos as i had a letter for physio but it was for local health centre not hospital so OT has had to reorganise.... Also phoned my Social Worker to see if she can write me a letter re my tribunal i seem to have spent most of the day on the phone!

Phoned the local Independant Living association for help to see if they can provide an advocacy with the Tribunal and apparently they have lost the contract so they cant help me so it looks like it will be just me and my fiance and possibly my carer if i can swing that to happen with my carer agency..

We had someone from the Council come on wednesday who said basically without middle or higher rate care there is no chance of any grants to get our bathroom turned into a wetroom this is the main reason i am fighting for the DLA.. the extra money would be nice but this is the main reason

Going to have a nice rest over the weekend! i think i deserve it i havent done any of my pacing i usually do this week.

appointments and sore throats

I am finally going back to my daycentre after their health and safety dept realised how stupid it all was. I cant believe i havent been not going for so long and its all been for nothing.. i have been sent a complaints form by my social worker to fill in which i will do shortly.

I have had a sore throat for the last three-four weeks and have been very sleepy i am not sure why i dont know if its fibro related i usually have sore throat with my fibro but not for this long.. my doctor has upped my dosage of my Pregablin tablets a few weeks ago they seem to be helping with the pain. I havent been going out much.. also we have had snow so i havent been going out due to risk of slipping on the snow with my crutches.

I had a phone call from a Rhemotologist Occupational Therapist and she has refered me to lots of services.. a rhemotologist physiotherapist.. also to see her about my hands and to see a clinic for exercises.. a specialist about my ankles and feet and a few other people at least someone is doing something. I am still waiting to see my Rhemotologist i have an appointment in a few weeks as long as he doesnt cancel it this time.

We have put in an order for a motorability car which is going to come out my Disability Benefits as of March i believe when we get the car. If you have higher rate mobility then you can use the money to get a car with tax.. insurance etc which is going to be very handy for us as my fiance is changing jobs so he will lose his work car.

I am getting better at using my wheelchair when i am out and about its no longer hurting my arms after short distances although i still get tired but i take breaks.. i assume i will get better over time.. doesnt help that there are gaps between using it i suppose i suppose i use it once or twice a week.

Tablets

Lots of stuff going on... always lots of stuff going on..

I had some problems with the day centre i was going to because they started weighing people and pretty much throwing people out over a certain weight (20 stone) because they said their equipment.. hoists and.. get this Toilets couldnt hold over 20 stone! now we checked this and apparently a toilet can hold 40 stone but they wouldnt budge.. and now they have apparently sorted some of the problems out getting a commode etc.. it cant be that hard all my equipment at home goes up to 30 stone and over not that i am anywhere near that heavy!!

The DLA want me to go to Tribunal as they cant make a desision.. although my best friend who is deaf and has mental health issues has just been awarded high rate care i just cant work the DLA out at all.. the DLA Tribunal can take another 14 weeks i have been fighting since June this is all starting to get a bit over the top now.. well i suppose if they do award it i will get it all back dated. Also my Social Worker Financial lady who has been helping me so far has been told she cant come to my tribunal with me so it will just be me and my fiance.. which of course is stressing me out further.

Our central heating was broken for several weeks as we couldnt afford to get it fixed and that has really been affecting my Fibro. I have also had my Swine Flu Jab a couple of weeks ago.. I had a really really sore arm.. was really tired and kept throwing up.. it doesnt seem to have effected my Fibro that i have noticed but again this week i seem to have another bug which is really annoying i always seem to be sick and seem to pick up every germ going *sigh*

My Rhemotologist appointment was suppost to be today but i got a letter telling me he moved it to febuary which is really frustrating me as i had blood tests and everything so he would have results about my Vitamin D levels etc. Apparently all my blood results were fine except my Vitamin D obviously but they are better than before my General Doctor that i saw yesterday said that they were in the 50s; last time it was 30 something but it is still low.. i told her i had done some research and apparently Gabapentin can affect Vitamin D levels she looked in a book for like 30 seconds and told me that there was no proof of this *sigh* and said that in the last letter from my Rhemotologist that he was going to take me off it anyway and put me on Pregablin which is much better with Fibro anyway.. so we have started me coming off of Gabapentin and in about 17 days i will start going on Pregablin.. hopefully i wont have any side effects coming off the Gabapentin. I am a little worried as i know that the Gabapentin did help a bit with my hands so i am expecting my hands to get worse i hope the Pregablin helps.. something needs to help!

My General Doctor prescribed me another Vitamin D injection as well which i had yesterday and she changed the type of Vitamin D/calcium tablets that i have... dont know if the tablet change will make much difference... it will be interesting to see if my Vitamin D improves once i am off the Gabapentin.

Lots of good things... about time..

I finally got the wheels upgraded to my wheelchair and have tried them out it is much easier to push myself now although i need to build my muscles up in my arms so they dont hurt as much when i am wheeling myself. They also sorted out my footplates; when we first got them they were very low and had been grating loudly every time my fiance had been pushing me up a curb i had tried to raise the footplates myself but they had been uneven since then and the Wheelchair Services also sorted that out for me at the same time which was nice of them!

My Electric bed came last thursday too its really comfortable and raises up and down and also at the knees and headend, it seems to be helping quite a bit at night with the pain in my legs and also making it easier for me to get comfortable... the cat also seems to like sleeping on it too!!

Spoken to my Occupational Therapist today shes going to see if she can get me a table that goes over the electric bed as i spend alot of time sitting or laying on the bed when my carers arent here either on my laptop, watching tv or sleeping... i dont tend to go about the house much when i am alone due to risk of falling and no one being here and the possibility of being on the floor for hours (its happened quite a few times before!)

I also had a call today from the day centre and i start next tuesday on the 10th, so thats also good news, lots of good things seem to be happening at the moment.. yay!! about time :) looking forward to going out and spending time with lots of people. Also called and arranged the dropping off and picking up at the day centre with my agency so thats all sorted too.

Two steps forward.. one step back

I heard from my Occupational Therapist a couple of days ago she said that unfortunately that they wont be able to get me a disabled mouse.. i had really been looking forward to that :( She also said that i am getting my new Electric Bed sometime next week hopefully it will help alot with the pain in my legs and also getting in and out of bed it should really make a difference. Its only going to be a single one which wont be a problem as we can put another single one next to it for my fiance so we can still sleep side by side.

I got a letter from the DLA thanking me for my appeal and telling me to expect a response from them within 11 weeks.. *sigh* i have already waited 13 weeks from the original claim + 3 weeks more this is taking forever i hope they finally bother reading my appeal this time!!

Been having alot of pain in my shoulders this is because my wheels on my wheelchair are alot smaller than they should be they are 20" and they should be 24" its taken several weeks and finally wheelchair services are going to send someone out and give me some right sized ones.

I went sailing with the Disabled Sailing Club i really enjoyed it the sailing and got to go in a "Rib" and went about 25 knots it hurt like hell to begin with but once i got used to the movement of the waves it wasnt as bad.. However i ended up with lots of bruises and needed several days of rest afterwards.. sometimes its worth doing things though and putting up with the pain :-) I will defiently be doing it again!

Havent heard from my Social Worker about the Day Centre yet but i wasnt really expecting too as i dont know how long the queue is.

Busy Busy Busy

Lots of stuff going on had appointment with my Social Worker went well, she said that i had extra money left over ; enough to go to a local disabled day centre once a week if i want to.

The ********* runs a specialist day service five days a week for people suffering from disabilities. The unit is staffed by care assistants who assist in planned activities and also provide personal care.

The centre also caters for people with increasing physical needs. Activities are geared towards enhancing people's skills and offering social stimulation. These activities include:

* pottery
* art
* computers
* soft crafts
* cooking.

We also have a mobility suite where people can access equipment designed to improve physical functioning. This service is offered following an assessment by a physiotherapist.

Short-term work is being developed to help people to regain their independence and find appropriate support in the community.

Staff at the centre are supported by a group of volunteers.

Looks interesting, today i went for a look around with my carer i am very interested the computer suite looks good and also i am interested in the crafts and pottery side so i called my Social Worker and shes going to arrange for me to go there on Tuesdays it may take a few weeks to get a place. But it also means i will get out and met more people with disabilities and more people generally rather than be cooped up at home. I would have to change my going out day to fridays.

I went for a look around in my wheelchair several people there (long term wheelchair users) told me my wheels are set too far back and also the wheels are too small because i am tall so i called the NHS wheelchair company that provided me with the wheelchair and they are going to call me and hopefully change my wheels so i am waiting for a telephone call from them...

I have also been looking into different types of mice for computers as because i have been having lots of problems with my hands and also with my thumbs it has been getting harder and harder to use a mouse, i have found a few interesting ones, i have called my Occupational Therapist and asked if she can help me get one and shes going to do some research into it and see if she can help as a mouse that is disabled adapted is about £50 with vat off because its for disabled use; which is alot of money and i dont want to pay it if i dont have to!

I have also been looking into Disabled sailing there is a local sailing club that offers sailing for disabled people they have adapted equipment and boats and are able to have wheelchairs on board i am going for my first session on saturday it is the last session of the season but i am looking forward to giving it a try. It does look rather interesting. http://www.sussexsailability.org.uk/

Havent heard anything back from the DLA but didnt expect to its only been a week!! still got my appointment on friday with the district nurses.

Meetings

I had the meeting with the lady from social services the "fincial adviser" on tuesday, on the letter that the DLA has send me there was a list of reasons why i did not qualify for middle or higher rater DLA all of which we had shown on the form that i needed help with so i did qualify for it. It seemed that the people at the DLA did not even bother reading the form! This is what Mel the fincial adviser said too, i suppose it is simular to when you first apply they say no to try and say money and discourage people but i wrote several essays the first about my currrent status and also saying why i did qualify and putting in detail every single one of the things on the list. Also i wrote all about what the carers do for me in great detail. Then i photocopied a copy of my care plan, and a copy of the journal written my carers daily and also the letters i have gotten from my specialist and Occupational Therapist. Mel got all these and put these together with the appeal form she filled in and has sent them back to the Appeal proccess DLA hopefully they will bother reading it this time!!

Next week i have a couple of appointments firstly one with my proper Social Worker to talk about my current care, eg carers i am tempted to talk with her about respite to give my fiance a break and possibly see if i am entitled to go to a care centre one day a week where i can do activities so this will get me mixing me with more people and get me out of the house.

Also later in the week i have an appointment with the distrist nurses to see if i can get an electric bed, i am hoping something will happen from this as i have been finding it harder and harder to get out of bed and also been strugging with alot of pain in my legs at night time and been finding it increasingly difficult to get comfortable :-(

Unfortuantely i have to attend both appointments alone which i am not keen on. Both will be at home, my fiance is at work for both of them although technically he could attend the one with the nurses but they are in the same team as him and it would be very awkward. I hope something comes out of it this appointment has been along time waiting and also alot of referals.

Fingers crossed everything goes okay.

Appeal

My "Social worker/financial advicer called i have an appointment called i have an appointment tuesday. I have been very busy the past few days getting stuff together for an appeal.

There reasons on the letter to me that i cant get a higher rate (middle rate or higer) are apparently because apparently i dont need -someone to help manage my toilet needs, get up and down the stairs, get in and up a chair, move about indoors, communicate, take part in social acitivites. I do need help with most of these things the problem is there is some person in an office who thinks they know me from a couple of words and i been working hard putting stuff together to try and help them understand me... i have written a document all ab out me which explains my condition, what stage i am in etc and also saying and explaining why i need help with the above things, i have included letters from my specialist, also my occupational therapist, a copy of my care plan and also a copy of my "diary" which is actually a book which my carers fill in stating tasks they help me with every day when they are here.. hopefully that will help. I have also written a document which explains in my own words what the carer helps me with; thought this might help. Now to let the lady on tuesday see and then send it off and probally wait another 11 weeks for a descision and if they say no it goes to a hearing which i have to attend.

I know alot of people who are no where near as bad as me.. who recieve no where near as much help as me who recieve higher Disability Benefit... Geez i know people who arent even "sick" who recieve it.. the system is corrupt... I am actually sick and therefore i cant get the correct level... shock.. they must save money!! Go Figure!

Got DLA letter *sigh*

Saturday i got my DLA letter, apparently the DLA people dont think that i have gotten any worse and that i dont require my Low care upping to Medium, even though i have alot of help via carers and there is little i can do looking after myself i cant wash myself, dress myself, i cant brush myself, i cant do my own food, i cant hardly cut my own food up... there are lots of other things i cant do and the list seems to be growing every week but non of this seems to matter. Well i am going to be appealing i am sure my social worker is going to contact me soon as she helped me fill in the form and then she will tell me where to go from there. Oh life is so much fun.

I have kidney infection atm apparently from the catheterizing but its giving me quite a fever and has bed bound me for almost a week, i am usually in bed alot because of the pain if i sit up too long.

Doctor has given me some new cream to try on my joints with Voltarol in it, seems to be helping a little with the pain but is only short lived.

Been going out in the wheelchair, our appartment is very small and its difficult to get the wheelchair down the stairs, its also a little heavy to push so only my fiance can push it, i tire easily as i havent built up the strength to push myself also my hands and arms arent that good anyway what with the neuropathy. We are going to try and go for a walk in it at least once a week and use it as often as i can eg when going down town but its a little hard with my fiance working so much.

We have put in an application to move into a council disabled property as the stairs are getting harder and harder to walk up and down it may take along time to get a property and then we dont know whats going to happen with this property once we have the new one as we have a small share in this appartment, it could take a year or more to get a disabled property but we have provided evidence from my specialist and doctor, also my occupational therapist wrote a very good letter to the council explaining that our current appartment isnt any good for my needs as i cant use the bath and also cant use the wheelchair inside, also the stairs etc and several other things, we are currently waiting to hear whats going on.

Got an appointment tuesday for my next vitamin D injection, hopefully that will work this is 300,000 ui like the last one hopefully my body will aborb some of this one! getting a little fed up with the whole vitamin D problem, getting a little fed up of all the problems at the moment to be honest.

A couple of things going on

A few things have been going on and havent...

I still havent heard from the DLA about my claim although i had a letter apologising that it is taking so long; i dont know if that is a good sign or a bad sign but i am keeping my fingers crossed i really hope its going to be good news i dont see why they cant give me middle rate care. Should hear soon i called the DLA and they said i should hear in the few weeks. Fingers crossed!

I finally got my wheelchair last tuesday, i had to call to chase it up and they finally called to say they were going to deliver it on the tuesday before mid day and then about 11.30 they called to say they couldnt deliver it. I was really unhappy and called back and managed to get them to deliver it as there excuse was that they couldnt pick it up and they were sure when they were going to be able to deliver it again.. well my fiance was off work last tuesday and he needed to be home when it was being delivered to see how to put it together and also to bring it up the stairs and it he wasnt going to be off work for another week and i wasnt going to wait another week for the wheelchair! I have been out in it twice now my fiance has pushed me for long "walks" in it so at least i am getting out a bit more.

I had my last blood results through and my Vitamin D levels are even lower than before the vitamin D injection.. i cant work that out at all neither can the General Doctor.. Before i had my Vitamin D injection my Vitamin D count was 59 and now 2 months after the injection its 35! which is crazy my General doctor wants me to have another injection so she has written me a prescription for it and i have to go see the nurse to have that in the next week or so *sighes*

We are thinking about moving house as the stairs getting to our flat are getting harder.. my fiance has been looking into it and i have spoken to my Occupational Therapist who is going to write a letter which should help, hopefully we can get a ground floor flat or somewhere with a lift we shouldnt have bought this flat really but we didnt know i was going to get worse so fast! Also we have to try and sell this fast which with the credit crunch could be fun.. dont know where life is going..

Still waiting for a response from the DLA about my claim so we can see whats happening about the bathroom (Showers are getting more and more difficult climbing in and out of the bath). Also apparently my OT has contacted my General Doctor and the Local Nurses about the bed situation so we should hear something soon, the doctor confirmed that she has recieved the letter but nothing has happened yet.. its possible there is a queue like everything else with the NHS.

I had a letter from my Rhemotologist saying that the problem with my hands is called Neuropathy (http://en.wikipedia.org/wiki/Neuropathy) after all the tests i had a few months ago (the Electro Nerve test etc) The Neuropathy is the reason why i have had all the tingling in my hands and also why my thumbs and little fingers on both my hands have gone numb so that i cant move them properally and why they wont move when i ask them too.

I had some blood tests taken last monday for my thyroid, also my Vitamin D and calcium and some other things. I went to the Rhemotologist today; on my birthday which was quite interesting. Apparently my thyroid levels have stablised now with the medication set at 75mg.

The Rhemotologist said there is several new medications from the USA that have been proven to work with Fibromyalgia that he thinks could help me but he thinks we should wait till my Vitamin D stabilise first. He was quite concerned about my hands and how that they are getting worse; he has refered me to a OT therapist also a hand specialist and told me i have to wear splints on both hands in the evenings and at nights and to see if that helps.

Carers are going well, i went out to the cinema with Liz my morning carer last week and hopefully will be going to the cinema this week my usual lunchtime carer Sue has been in hospital for the past two weeks so i have had random carers most days which i have found rather frustrating and the lunchtimes have varied quite a bit.

My Wheelchair hasnt arrived yet, it is suppost to arrive within 4-6 weeks this week is week 5 so it should be here soon, hopefully it will arrive soon so that i can enjoy going out for some of the summer!

Grrrrr

Just a quick post, i had a letter this morning from "Anchor Staying Put saying that the council had assessed us and they they will not pay anything towards our new bathroom, for them to pay ANYTHING we would have to pay £36k of work, which when the bathroom is only £5k isnt likely we are going to get help! we were told that we were going to have to pay some but we werent told that they would refuse altogether. The reason is because Simon works. Apparently they may pay a very small amount towards it IF i get higher rate care but we will have to see what i get awarded first.

They have only taken into account the figure Simon earns, not how much rent we pay, or the mortgage, or bills which is unfair. I have spoken to my Occupational Therapist who also thinks it is disgusting as it is a need rather than a want and she is going to look into it and see if there are any charities that may be able to pay or help towards it.

I also had a letter from the rhemotologist with the results from my hand tests (which i previously know didnt show carpal tunnel syndrome) my Rhemotologist advises me that i am suffering from Neuropathy in my hands (http://en.wikipedia.org/wiki/Neuropathy) which is a disorder of the nerves; which is linked to the fibro. I called the Rhemotologist today to make an appointment as i havent seen him since march.

I have also been suffering from toothache in quite a few of my teeth, i know that maxiofacial pain is common with fibro this is very painful. My dentist did some xrays and nothing has shown up but on two of the top teeth he is going to do some root treatment to block the pain as it is very bad. However the appointment is not until Septemeber as he is off for the summer holidays, i dont know if i can wait that long.

The carers are going very well, i am enjoying going out and having some cleaning done is meaning that there is alot less stress for my fiance.

No news back from the DLA Yet but it was unlikely their would be any back this soon!

Had a few appointments this week, first one was my Doctors, but nothing new there.. just a monthly checkup to see how i am doing and a prescription for meds for the next month. I do have to have my blood taken next month to see how my Vitamin D levels are doing and also to see how my Thyroid levels are.. not really looking forward to that seeing though it took three peoples attempts last time to finally get blood from me.. damn why are my veins so awkward!!

I also had an appointment with "Anchor Staying Put" which are a company employed by the council to help with the bathroom being converted into a wetroom, a lady came around to take all our financial details and fill in lots of paperwork for the grant. However as my fiance works works its highly possible we may have to put some money towards the bathroom. I am worried about this as we dont have any savings and all my benefits and my fiances wages are spent each month on bills, food rent etc. We dont get any discounts on council tax and my fiance doesnt get any Carers allowance because he works. The lady did say it is possible to pay in installments and if we do have big problems that it is possible to look for charities to help us.. i am very worried about this and how much we may have to pay towards this.

It is not really our choice to have the bathroom amended as it is a health need as i can not use the bath anymore and its really difficult to use the shower which is above the bath and to use it i have to climb into the bath which again is really difficult; even with a bathseat. Apparently the average Wetroom costs about £5000 to be installed.. i will be worrying about the cost of it until we find out which could be a few weeks!

I had my appointment with 'Wheelchair Services' yesterday which was interesting i was all measured up for the wheelchair and they told me it would be delivered in a few weeks, i am really surprised how fast it is all going to be sorted. Its black so its not a interesting colour or anything and its self propelling, it collapses down so it can be folded up into the car. Its for use outside when we go down town etc as i can not walk for more than a few minutes and walking seems to be getting harder all the time and i seem to be falling alot more. I fell badly a few weeks ago down the stairs to our flat and ended up in bed for a week; the fall caused great problems with my fibromyalgia as well as injures from the fall itself.

My Occupational Therapist called the "Falls Preventation Team" last week as i hadnt heard from them in a little while only to hear that they had discharge me.. it was very nice of them to tell me! i must say i am pretty unimpressed with both them and the physiotherapists.. i saw the physios twice.. two different people before they said they cant help me, and i only actually saw the "Falls Prevention Team" once and they didnt tell me i had been discharged.. especially as i had to wait about 7 months on a waiting list for physio!

So things are continuing to move forward.

Getting somewhere

Everything with the carers seems to be going well, pretty much been having the same carers morning and lunchtime although there was a gap of a week with different carers in the morning because the morning carer was on holiday. It was a little chaotic as i had a different carer every day so had to explain what had to be done and where everything was eg breakfast bowls, milk, cereal etc every day which got a little annoying. Both carers are always around the same time which is good as it means i am getting into a routine; i am also able to call the agency if i want to make any changes to times or days, for example my fiance is working this weekend so the careers are coming this weekend although its likely it wont be the usual carers because they only tend to work in the week.

The carer agency hasnt gotten back to me about how long or when i will be able to go out or how long or when cleaning will be able to be done, apparently they are still working out the finances, this seems to be taking quite a while its been four weeks monday.

I had the electro nerve test at the hospital which apparently shows i dont have carpel tunnel syndrome which is apparently something the rhemotologist was looking at, they had alot of problems getting a reaction in one of my thumbs, i should recieve an appointment soon to see my rhemotologist soon to discuss it and also talk about how my fibro is doing generally.

I had a financial adviser from Social Services around yesterday the same lady who came around last week. When she came around last week she called the DLA and requested some forms so i can reapply for a higher aspect of the care componant as i am currently on the lower componant and after helping fill in the forms she thinks that i should be entitled to either middle or higher rater care, apparently i should hear something within 6-8 weeks, so fingers crossed.

Also yesterday we had the bed raisers delivered so the bed is much higher so when i sit on it to get into bed and get out it is much easier the only problem is that it is higher of course to lift my legs. We havent heard anything from the nursing team about the electric bed yet.

Only a few days left until i see wheelchair services on the 1st of July, i am starting to feel nervous.

Carers and Crazy Tuesday

I have had my first week of having carers, overall its gone pretty well.

I have had the same carer in the morning and i am going to have the same carer in the morning continiously, getting on really well, she comes around 9.30am and makes breakfast and a cup of tea, and then helps me wash, brush hair, brush teeth etc and then assist get dressed which roughly takes an hour.

Then i have a second carer come at about 1pm and make me lunch which is about 30 minutes. The funny thing is although it wasnt intended is the lunchtime carer turned out to be my cousin which is really good because it makes me feel like i have a friend around and makes it feel less clinical. The agency said that its okay for my cousin to continue being my lunch time carer as long as she only does lunch time and not morning caring, as morning caring would be unethical. I am more than happy for my cousin to continue being my carer. The other thing that the agency said is that with my cousin being a carer that patient confientuality would have to kept.

On Thursdays i go to my mums early, my fiance starts work at 10 and takes me to my mums at 9.30 so i have to have a carer early. However the usual morning carer isnt available at 8.30 so i have a different carer and i dont have a lunchtime call because i am not at home.

Tuesday was a very busy day, i had my normal morning and afternoon carer calls, i also had someone from the agency call to write up a careplan which took an hour and an half.

Then i had someone from social services come to do a financial assessment to see if i am able to contribute towards my care, when they do this they take only my money into account... my benefits my Disability Living Allowance and also my Incapacity Benefits and also all my outgoings, they worked out that i was unable to contribute which is common with people on benefits. Then i spoke to the person about my benefits and they said that as i am not sick enough to be needing care assistance i should be entitled to the middle rate care componant of Disability Living Allowance and at the moment i am only on the lower care componant. The lady called the DLA and requested the form which came through today, i need to call her monday and make an appointment and she will help me go through the form.

After the social services lady left then my Occupational Therapist came to measure the bathroom for the wetroom and said that it should be completed within the next few months, she also ordered some "elephant feet" raisers for the current bed we have, and is refering us to the district nurses RE getting a electric bed but is not sure whether or not we will be able to get one.. The OT was here for about an hour, overall it was a very crazy day!!

Very glad it was over!!

WoW what a week

Its been one of the busiest weeks i have had in along time so much has been going on.

Tuesday i had a doctors appointment and had the results back from my Vitamin D level tests the results werent good, i have been on 2 Adcal tablets (800iu) a day for about 6 months now and my vitamin D levels still arent improving much, even apparently after we went on holiday to Cyprus and i spent hours and hours each day in the sun still didnt seem to make any difference. So my Gp descided that i should have a Vitamin D injection (300,000 iu) and see if that makes any difference. I have to have my blood tested in two months also having my thyroid tested to see if my increased Levothyroxine is helping. Its possible that the Vitamin D injections may need to be a regular thing every 6 months or so. I had the injection on thursday by the nurse.

Wednesday i had an appointment with the Sleep Clinic as i havent been sleeping that well.. well to rephrase that i have been sleeping too well.. some days 12-15 hours.. i have had the hose checked on my CPAP machine and on Wednesday the Sleep Nurse put my pressure up to 15, she also told me to keep an eye to make sure that the machine mask isnt leaking but i am always careful with that anyway.

Thursday i had an appointment with the social worker, i have been waiting ages to hear back from the social worker RE the situation about whats going to happen about a carer,she told me she had looked through my report i had written recently about what is important to me reguarding my care etc and was happy with that, and that Social Services had met up, come up with a very good figure that would allow the level of care i needed, someone to come help me get up in the morning, prepare breakfast, help me get washed, dressed, make sure i have enough drink till lunchtime, come back at lunchtime and prepare lunch and then make sure i have enough drink till my fiance comes home. She also said that there was enough money so that i would have a carer if i wanted to go out with a carer down town or down the beach or something one day a week. Also that the agency would be starting this Monday!!! i was totally taken aback and amazed after waiting all of this time for everything to happen so fast is amazing. I am waiting a phone call today (friday) from the agency to discuss details about my care etc what i require, what time i want someone to come etc.

Also thursday i had a phone call from "Wheelchair Services" giving me an appointment on the 1st of July, another thing which is starting to fall into place.. everything seems to be happening all at once its overwhelming, i just wish it had happened sooner but at least it is happening, then again i dont know how long the whole process will take but at least the ball is rolling.

Wow what a week... I have an appointment next week too for the electro nerve ending test and also an appointment with an financial adviser to discuss my benefits and they also check to see if you can contribute towards your care, apparently this is based soley on my incomings... my benefits. I also have an appointment with my Occupational Therapist next week and she is coming to measure the bathroom for the wet room. So another busy week coming up!

Appointment

I finally got my appointment through for my electro nerve conductivity test; its on the 10th of June, looks like they gave me a little more notice this time, after which i will get another rhemotology appointment. I have heard the test is painful but i am hoping that it isnt.

Feeling a little better re my hypothyroidism wise my hair doesnt seem to be falling out as much any more and my skin seems much better on my hands although it still seems very flaky on my feet.

Social Services seem to be very slow, we were suppost to hear a descision back about three weeks ago about getting carers but we havent heard anything back yet and every time we call her she isnt in the office or shes in a meeting. Its very frustrating and annoying i just want to get the ball rolling i suppose you get your hopes up that things are going to change for the better and they get dashed.

Also it looks like the Occupational Therapist isnt going to be able to get us an electric bed.. they are going to take it to their panel but the chances arent hopeful unless me and my fiance want to sleep in seperate beds or rooms which we dont want to do at the age of 27/28. There is another small possibility that we can get a grant from the council if not we are going to have to save up for one ourselves and they arent exactly cheap. The OT was suppost to come around about a week ago and measure the length of our bathroom for the wetroom details but i was sick. Its possible they may not need to do anything but put down a new special floor and take up the bath and put in a special shower and shower container style thing.

No news on the wheelchair but i know there is a queue but its been several months and still no word.. Onwards till the future..

So much going on

After several failed blood tests i finally had some correct blood results back which show that i need my medication for my Thyroid upping; which i knew anyway as the symtoms have been getting worse especially with the dry skin and hair falling out.

I have finally been assigned both a Social Worker and a Occupational Therapist which i have seen several times both which seem like something is finally going to get done.

The Social Worker has assessed me and is sure that i will be able to get a carer to help get me up in the morning, wash, dress, prepare breakfast and make sure i have enough drink etc, and then come back later at lunch time to prepare lunch and make sure i have everything i need. Also possibly help with any housework and cleaning. We have filled in some forms with her and she has to address a panel for funding for an amount of money to pay for the carer; this is going to be done shortly.

The Occupational Therapist came to our home and assessed me too, looked at what i needed, suggested having the bathroom replaced with a wetroom which my fiance was not happy with at the beginning with but has agreed that it is the best step forward. The OT also has also suggested a few small things around the house equipment wise that will make things easier for me and has ordered these.

The other major thing that is being discussed is the bed; as i have problems sleeping due to pain and being able to get comfortable also i have problems sitting up and also turning and getting out of bed; first she suggested a bed raiser but that would fit under the whole double mattress and raise my fiance too which would not be practical. Then she suggested us having seprete beds and myself having a bed raiser or electric hospital bed.. but at the age of 27 i dont wish to sleep in a seperate bed to my fiance. The OT is trying to think of some other ideas apparently they can do full double electric beds but she doesnt seem to want to think of this idea.

We recently went to a Baptist conference but as i am so weak and get tired easily i was unable to attend any seminars and spent most of the time in the hotel room which was a little lonely but it was nice to be in a different location and be away from home. I did get to go along the beach for a very short walk though and ride on the mini train along the beach which was nice but very bright.

Had another problem which i am really unhappy about, when i saw my Rhemotologist last he said i would be refered for a electro nerve test, the appointment came through whilst we were on holiday giving three days notice for the appointment, so when we came back of course the appointment had already passed. Then i recieved a letter from my Rhemotologist saying i had missed the appointment and that if i wished to see him i would have to be re-refered as he had now discharged me because of this. I think this is disgusting especially because i told him i was away and not to arrange it for these dates.. i phoned up and i am "apparently" awaiting another appointment but this is a month and a half later. How come previously they had made the appointment within a week or so and now so long? I think they are making excuses.