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..