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.