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.

So much has been going on that i am probally going to get the typists equivelent of writers cramp from typing this!

I visited my Rhemotologist who did some blood tests and also descided that i should be put forward for an electro nerve test because i have been feeling alot of numbness, i had the appointment come through whilst i was on holiday so i had to reschedule and havent recieved the new one yet.

I have seen my GP for the results of the blood test originally a month ago which had only partly come through at that time showing that my thyroid levels were very low so i have been put on thyroid medication. I had been suffering a handful of symptoms previously which i had not known what they were linked too and apparently they are all linked to thyroid problems. However even with the medication these problems seem to be increasing but i know that the medication can take a while to kick in (Very Dry mouth, ALOT of Hair falling out, Dry skin)

I saw my GP a couple of days ago for the rest of the blood results which also show my Vitamin D and Calcium levels are still very low even though i have been on AdCal tablets for 4 months!! Although apparently both Thyroid problems and Vitamin Defiency of this type are both common with Fibromyalgia. The rest of the tests were clear i believe. I have to have some of the tests repeated in the next two weeks to see if some of the new medications are working.

I had my disabled logo painted on our parking space today, it only took them four and a half months, my fiances theory is that as today is April 1st that they waited for the new financial year. I am not happy that it took so long. I have also been advised that they are going to write letters to all the other owners/tenants advising them that that although the parking space has a disabled logo in it, that it is still legally the property of me and my fiance as shown in our deeds.

Our holiday went very well and i enjoyed it alot. We saw alot of sights whilst we were on holiday but i paced myself quite well in Cyprus tending to go out one day and then resting the next also being very careful what we did. We managed to hire a wheelchair in Cyprus which was good meaning that i didnt have to walk all the time. The bottoms of my crutches broke half way through my holiday so we had problems trying to get replacements. Cyprus isnt very good for disabled people to be honest there was hardly disabled toilets and slopes and we spent half a day looking for a disabled shop on the island when my crutches died. I think if we went again we would wait a few years as i am sure that Cyprus have to get up to scratch soon being members being members of the EU!

We organised help from the airport both ends, we could not fault the british side, someone came and meeted us from where we dropped the car off with a wheelchair and pushed me to check-in then through customs and into the departure lounge and then when the plane was ready we were called on tannoy and buggied to the terminal. We had arranged seats with extra leg room which helped with my legs, although it still took me a few days to get over the flight over there.

On the way back someone pushed us to check in but then we had to go find them.. which wasnt easy and the they pushed us through security and through to the departure lounge and told us they would meet us at a certain place to take us to the terminal.. well they never showed up and we had to make our own way there with alot of bags.. medical equipment and me in a wheelchair and boarding onto the buses no one pushed me down a ramp like they said they would it was very very steep and lost control and ended up going sideways into a railed wall.

Back at the English side of course it wasnt to bad although they had one man dealing with three disabled people on a buggy, we arrived back at about 2am so it was very later but he seemed very organised.

The landing was very bumpy and hurt me alot, its still hurting me now a week later so its taking along time to recover!

Fall Prevention Team and other stuff

I had the Fall Prevention Team out a couple of days ago; they have descided to do physio exercise at home with their Occupational Therapist. They also looked around our flat and talked about various items that would make falls less likely. I am currently awaiting delivery of some raisers for the bed and also a raised toilet seat and a better frame to go around the toilet as the previous one i was given by them was not very good. We also discussed grab rails but i dont know when they are going to be installed. They are also referring me to wheelchair services re the wheelchair for when i get tired etc when i am out and about.

The falls seem to be happening alot still.. still about 2-3 times aday adorning my legs and arms with many bruises! A few days ago i fell and knocked myself out whilst walking in the lounge luckily i did not hurt myself badly and my fiance was able to look after me, i am very lucky he is a nurse. Still using the walking frame and crutches around the house.. and of course the crutches outside the house.

Going on holiday in a few days abroad, i am still a little worried how its all going to effect me. We have extra leg room on the flight which should make things a little easier but we had to pay extra for this. Also we are being escorted around the airport possibly in a buggy of sorts or a wheelchair. Also the airport have advised us that disabled people board the flight first.. but i am also assuming that this means that we leave the plane last.. but i may be wrong.

Our friend at the other end has arranged a few things for me, a bathboard like i have at home and also a wheelchair as if we go out alot then i will probally need one otherwise i will get very tired.

I am a little concerned about the light hurting my eyes as i have a sensativity to light with my constant migraine but we had our glasses adjusted some months back so this should help a little. I have been told by both Simon and my Gp that the heat should help my joints and muscles.

We had to get letters from my GP listing all medications i am on for the airport because i am on morphine and alot of meds, the last thing we want to happen is to be accused of smuggling drugs lol!! Also had to get letters to prove that i need to carry both my Nebuliser and my Sleep Apnea CPAP machine as hand luggage on the plane in case of emergency.. also this way they dont count towards our luggage weight which is good.. it was alot of hassle and the GP letter cost us £15!!

I went to see my GP yesterday just for a regular appointment and to check everything was okay before going on the flight. One or two of the tests had come back.. not the allergy ones though apparently my thyroid function is low which means i have to take more medication.. geez this is apparently something that will effect me for the rest of my life.. but is very common in people with fibromyalgia.

Continuing

After being given the frame for a week i continued to fall.. 11 times continuing to cover myself in bruises, i feel like i am turning myself into some kind of strange form of bruised artwork but the bruises are mainly on my arms and legs so clothes keep them covered so people cant see them.

I saw the physiotherapist again who was concerned that i was still falling but suggested that i continue using the frame at home where possible. She also contacted the "Fall Prevention Team" at the local hospital who are coming out to see me later next week.. Apparently the come and assess your home and suggest things to help. The physio also told me that i will need to use a wheelchair outside when i get tired otherwise i will fall and possibly break something i have to wait to see the Occupational Therapist. The FPT should be able to push me forward alittle in the queue hopefully.

She also advised me that because of the nature of Fibromyalgia with fatigue and the way it effects joints and muscles that she thought physiotherapy wouldnt really help me at the moment and has discharged me at the moment.

I still havent gotten my disabled space outside our block of flats, it has been two months now since they had all the information and "started work on my case" apparently they just found out that their disabled logo for painting is "damaged beyond repair" and that they have to order another one which will take another week so we will see what happens!

I have also had another Rhemotology appointment, he sent me for some blood tests, including allergies, triggers of IBS and some others. Also i am being sent for a nerve electrical test to see if my nerve endings are working or not, need to wait for an appointment for this.

Frustration & Anger

Today i attended my physiotherapy session, something i have been a little worried about for a while i must admit. My physio told me what i already knew; that my legs were getting worse; deteriating, but before chucking me straight into a wheelchair she suggested a walker frame first. I must admit i was a little horrified to begin with, walking frames are what old people use. But at the end of the day anything is better than going into a wheelchair.

I felt my physio was one of the first people that actually listened to what i was saying about falling over several times a day. She also suggested having a lifeline which is a pendant which you have around your neck also a box which is connected to your phone line with a button. Either of which are pressed it goes through to a gallantry who call your "emergency number" a fiance or family member or the emergency services. Very good for people who are disabled and are prone to falls. They are available from most district councils.

She also gave me some physio exercises to do several times a day which i will try my best to do, they are quite painful to do at the moment but hopefully they will become easier as time goes on. So at the moment i am trying the walker frame for a week to see how that goes, if that doesn't work too well then talk of a wheelchair will be discussed which i will not be looking forward to i will try my best to get on with the frame. But as the physio said my legs are getting weaker and weaker and as i am falling more and more often it is only a matter of time until i fall and eventually break something. The physio said that if i did have to use a wheelchair that it would only be for outside to begin.

Something at the moment is really bothering me, how people judge you without knowing what you are going through. People assume that because they see you one day a week or less that they understand how you are feeling or the pain or suffering you feel. Someone said to me today that if i go into a wheelchair that i am giving up. They don't understand the struggle that i have to endure every day and the pain i go through.

They also said to me that i could be making up the condition, that anyone can go to a doctor spout off a list of symptoms and get diagnosed. I suppose this is correct but i have been diagnosed by specialists, and been through numerous tests, seen lots of consultants in different fields. I also have various different conditions which are also linked to my fibro.

The Social Services contacted me this week advising me that i was going to be contacted soon (within the next month) with a direct payment assessment, at least the ball is rolling now.

The Housing Officer for our block of flats still hasn't put the disabled sign on our parking space and what with the snow this week, it really has been quite dangerous walking across the carpark, i am luck that i have not fallen on the snow and hurt myself; although i have slipped a few times but managed to regain my balance.

I have never felt such anger towards someone as i have today, the person who said that to me, i would almost wish them to walk in my boots.

The other thing that really winds me up is websites about fibro, non of them talk about "severe fibromyalgia" they only talk about the basic symptoms they all talk about exercise which is near on impossible if you have the condition severely as you struggle with so many aspects of life. I try to "exercises" walking far or doing anything that constitutes as "exercise" puts in me in bed for days on end. When i go to my mums house, and just see my nephews and do hardly anything and it tires me out..!!

When i did hydrotherapy (which i am sure constitutes exercise),i was barely able to walk out of the pool at the end of a 30 minute session and had to be hoisted once.

I do have two members of my family in wheelchairs (1 due to a spinal accident and one due to MS) so its to be understood if i just got ill 18 months ago and said ah sod it i want to go into a wheelchair.. but i have been fighting, but people just don't see it.. however much i tell them or explain.

I have never given up with my fibromyalgia but fought it every step, its a shame how some people are so blind.

Trying to reel you in....

I am a little bit peeved, the meeting to the "Pain Clinic" went really badly! they asked me lots of questions and lulled me into a false sense of security before asking me if i wanted to take part in a "cognitive pain therapy". They kept changing their story about what this "therapy" was, they told me that i would have to come off ALL my pain medication which is a crazy idea and then that i would all be cured through breathing techniques. (Now in the real world my pain causes me absolute agony, okay i struggle with it even with the pain killers but without my medication i would be a ball of pain unable to move or do anything!) i mumbled a bit and told them that this would be impossible that i would not be able to function without my pain medication firstly for my migraines (last time i tried coming off my migraine medication i spent most of that week screaming in agony and do not wish to repeat this experience) he told me that i would not expect me to come of all my pain medication (eh isn't that against what he said at the beginning?!?!) They then told me it would totally be up to me, but that i would no longer need to see my physio or my rhemotologist or any of my specialists if i went on this "therapy" (well i may not be totally pain free at the moment but i am not keen on "miracle cures; this may work on people who do not have 'severe' conditions. However its taken me 18 months to get my physio, medications, rhemotologists and specialists after referrals and i don't fancy giving them up!) They also gave me a ton of leaflets which didn't even mention giving up medication at all, oh and i forgot the best part, i would have to give up medication for several months before the "therapy" starts, so i would be total screaming agony for several months... yay to the program!!! erm not!!

Also on Tuesday we went to the Fibromyalgia group and they had a speaker on myofascial release which is basically different forms of massage is also pressing on different pressure points to slowly eliminate pain and restore motion. The myofascial speaker saw also practised other forms of treatment like hot and cold stones, raike, etc. I descided to go lay on her treatment bed and she did a very small amount of myofascial release treatment release on my head, she was able to tell using her techniques where my migraine pain was exactly and through manipulation with her hands was able to lower the amount of pain i was in for a short period of time. Both Simon and myself were very impressed especially after five minutes of her "treatment" her sessions are in Woking which are very far from where we live and i do not travel well with my fibro, also the sessions were a little expensive but to be honest cost is not important as if pain can be lowered in five minutes and sessions last an hour. If we can find local sessions it may be worth looking into further in the future.

I have been having problems with our parking space at home, its still not marked with a disabled logo. Our block of flats is owned, everyone owns their flat, and their own parking space however no one parks in their own space, we have one space each. However alot of couples live in the flats and assume they can have two cars and park in two spaces so recently there have been hardly any spaces available in the car park and we have had to park on the road. I have been really really struggling walking that far. Today i called the housing officer and REALLY had a go at him as he promised me it would be done soon.. and now it is causing me more problems. He also mentioned he will probally write a letter to the other tenants advising the other tenants the disabled space is mine. He said he will try really hard to get it done next week if he can. If not in the next two weeks.. but i will believe it when i see it!!

I have also been in contact with the Independent Living Assocation (http://www.ilawestsussex.org/) who are going to put me in touch with social services for a assessment to see if i am eligable for direct payments for a carer to help out at home look after me when my fiance is at work and maybe help with the house a little... apparently thats what the guy on the phone says they can do.. he is also sending me out a leaflet. He seemed very friendly.

The problem is it is very difficult to know what you are entitled to!

I have physiotherapy on the 2nd of February so i have that to look forward to, dont know whats going to happen, my fiance works at the centre where the physio is going to take place so will save time and he will be able to drop me off and pick me up.

Feeling a little frustration my fiance is a nurse and takes time from work to take me to hospital appointments but he advises them in advance and also works the extra time in lieu but someone complained about him. Its not like hes doing something wrong. Grrr just made me a little angry.

Frustrated.

I had an appointment with my GP yesterday and i tried to explain how much pain i am in, how i am having problems gripping, problems walking etc. I feel she wasnt listening to me. She didnt want to put my pain killers up or offer any advice or alternatives even though i told her the pain was keeping me up all night and the only way i was sleeping was through sheer exhaustion.

She just didnt seen interested at all. I suppose this is what happens when General Doctors dont know anything about Fibromyalgia and i suppose this is happening all over the country as the UK as a whole knows little about the condition. I really wish that i lived somewhere where people knew about fibro.

I have fallen once or twice a day for the last few weeks my legs are getting more and more painful to walk, the only thing that keeps me going is that after thursdays hydrotherapy i will be refered back to my physio and maybe they can do something about it as my GP didnt seem interested at all in it.

She did put my Gabapentin up although i must admit i havent noticed that it helped at all but my fibro seems to be getting worse and worse its so difficult to tell. She has put me up to 1800mg; 600mg 3 times a day.

Also because i spend most of my time in a darkened room, which have done since the beginning of my fibro because of the constance severe migraine which i have photophobia and sensativity to sound with she has prescribed me calcium and vitamin D tablets to stop me getting a deficiency probally could have done with these for the last 18 months though hmm.

I have my first pain clinic in Bognor on monday which should be interesting, i am still quite peaved that Worthing wouldnt take me and the reasons why. When i first became ill with the migraines they believed it was all in my head and they put this on my records which was so wonderful of them and when the other fibro symptoms followed and i had to be refered for pain clinic at Worthing they wrote back saying they couldnt help me as i had mental issues. At least my GP ignored this one. Stupid people grr.

The Fibro fog seems to be getting worse and worse i am struggling more in convosations to remember simple words like "microwave" and "car" and even peoples names; people in my family but only minutes later i remember them again, it makes me feel so stupid, almost to the point of crazy. I also seem to be developing my stutter back slowly which only makes me more concious of speaking. I am just frustrated overall i feel like i am screaming but no one is listening.

I am fed up everything i just want my life back.

Good.... and Bad....

I am currently waiting for the housing officer to put a disabled logo on OUR parking space, they really made me jump through hoops for that one, i had to send in a copy of my Blue Badge, send in a copy of our deeds to our flat proving our parking space, also a copy of my DLA letter proving my disability and finally a letter from my GP saying why a disabled space would be beneficial to me. The main reason is that well in our car park we all have allocated parking but no one actually bothers following it. Our space is right next to the front door of the block which is brillant because of course with my fibro i cant walk far but of course every other person wants to park there too! and we end up parking really far away and it ends up killing me walking that far and also recently somehow the car park has been full and we have had to park on the road! I am not sure how the car park has been full as half the people dont actually have cars, but i think that some people actually have two which is a little out of line! Well when they finally get around to painting the logo it will help alot as long as we dont get other people parking in it!

We contacted the Occupational Therapist and they have brought some equipment around, a surround for the toilet (which isnt really that great as it tips when you stand up!), a bath seat, raisers for the sofa chair i sit in in the lounge (which are brilliant but now its higher my fiance keeps wanting to sit in it :P) and also a special stool which is really handy for when i am washing and brushing my hair in the bathroom. I am also on the waiting list to see the "actual" Occupational Therapist which is about four months and they will be able to give me advice and help me with some other items etc which will be useful.

I also got my free prescription card which means i will no longer have to pay for prescriptions based on the fact i can not go out alone and can not collect my presciptions without someone with me or collect them.

Over christmas i took some photos with my digital camera but my hands have become very shakey with the fibro and almost every picture came out blurry, a friend recommended getting a new camera with anti shake and decided to get the Canon A570 ( http://www.kenrockwell.com/canon/compacts/a570.htm ) which takes really amazing pictures as shown by the above photo

My legs and hands are still continuing to get worse , its getting harder for me to grip i have to put alot more effort into gripping and my hands keep spontaniously releasing when i am holding onto items so i am dropping things like forks, crutches etc which is not good. I have fallen several times over the last week, four to be exact it is happening more often. I wasnt using my crutches around the house all the time but leaning on the walls but now i am having to rely on the crutches all the time both at home and outside. But with my hands getting worse i am struggling to hold them, two of the falls this week have been with the crutches both a mixture of my legs being bad and also my hands struggling. The pain seems to be increasing however the numbness seems to be going a little.

I had my fifth hydrotherapy session this week it is suppost to be helping but i am finding it harder and harder each time and afterwards it hurts more and more both in and out of the pool. I take pain killers before i start but i am worried about taking too much as i dont want to become to drowsy in the pool. This week my hands and legs became so weak and painful by the end of the 30 minute session i was barely able to stand in the water whilst holding onto the side and it was obvious to both myself and the physiotherapist/hydrotherapist that i was not going to be able to walk up the steps out of the pool holding onto the rails (something i am usually able to do with great difficultly and very slowly but i am usually able to just about to maintain my diginity) but this time i was too weak and in too much pain. We agreed, myself somewhat begrudgingly that it was safer if i was hoisted from the pool. They did their best to maintain my dignity but i truely felt that i had given up and that i was broken and defeated.

At the rate my fibro seems to be getting worse i dont know what is going to happen i have one more session left and i hope and pray that i dont have to be hoisted again as it was most unpleasant but after that session i go back to the physiotherapist. I am fed up with the pain, i am fed up with hitting the floor and i am fed up with the bruises i dont think i could be more frustrated if i tried i feel truely defeated and hang my head like a wounded animal!