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.