Firstly my business isn't going ahead, it was very stressful, the planning and applying for funding from differant sources etc. I decided after a lot of consideration that if this was too stressful then running the business would be even worse. Secondly, I had a letter from Arden House asking me to go for a medical examination to assess my rights to benefits. Mum rang and explained my current situation, that i hadn't been out the house for 7 weeks and that I deffintly couldn't go during the school holidays (busy) or early morning as i am unwell in the mornings. Asked for a homevisit, they said i needed a fax from the dr. So mum got a fax and sent it to them. Then i got a letter saying on the occasion they couldn't offer me a home visit. Mum rang them back and they refused to change this 9.20am appointment (i had to leave house at 8am), during the holidays. I didn't go... got a form asking why i didn't go and why I hadn't told them when I made the appointment. Filled in the form. Got a letter yesterday saying that a desision maker has looked at reason for not attending and has deemed me fit to work. I have one month to appeal or find a job!

At long last

Sorry i haven't posted for a while, I have been too obsessed with Big Brother to do anything. I did however go to the hospital on August 16th. I had to go all the way to the freeman hospital. When i got there, the queue was out the department door. We queued for about 20 mins. Eventually i got called in to get weighed. So i did, and measured. I was 5ft 5 and very heavy lol... Then blood pressure, i cried when the thingy thingy'd it was so tight it hurt... blood pressue was 146/102 which is quite high apparently. I was then taken to some corridor that seemed MILES away from anywhere else in the hospital. Sat there, crying, coz i was so tired. I read a poster about hip replacement, 4 times, so i know what to expect if i ever need one. Then the doctor came out and my heart sank. I'd waited 10 years to find out what was wrong with me but now the day was actually here, I wasn't sure I wanted to know. I sat in the office with my mum by my side. Told the doctor about all my problems. She got me onto the bed and started to press on my thingy points. I knew that if I felt pain in 11 of the 18 places then she was going to diagnose me with Fibromyalgia. I think I felt pain in all 18 places. I made my way back to my chair and she told me that I did indeed have Fibromyalgia. Mum asked about M.E./Chronic Fatigue Syndrome and she said that it's the same condition in her eyes. It's not in mine but there you have it. So i THINK i have M.E also but i'm not 100% sure. She explained that the NHS doesn't have the resources to help and that in America the condition much more understood. She said that gentle excercise will help so I should get in touch with a gym, there are NHS gyms or something where I would get a discount. Physiotherapy may help but I would have to go private and there are only a couple of drugs approved in the UK. One of which i was prescribed, Amitripylene 10mg. I have to take 1 tablet in the evening, it is to help me sleep, so i can deal with my illness better when i'm awake. She took bloods, well she didn't take them, the phlibottomest took them. To check for Sjorens Disease. She said the results would be sent to me in a letter but I haven't recieved the letter yet and I have to go to GP to have blood pressure done again. She also recommended i get transfered to the Queen Elizabeth hospital in Gateshead where there a doctor who has been researching fibromyalgia and knows more about it than she does. However I have forgotten the doctor's name.

It has been 7 months since my last post. I have been reffered to Rhuemetology and had an appointment for June 28th which was cancelled and re-arranged for August 16th. I have started having another type of seizure, i grunt, my eyes roll, and i can't speak, these only last for a couple of seconds and I have upto 100 a day. I have had MRI scan and EEG over the last couple of week, getting the results in August or September (waiting for appointment). I have developed TMJ (Temporomandibular Joint Disorder) over the last couple of months. I am also in the process of starting my own business. I have set up my website and waiting for funding to come through from the council so I can get things sorted. I am an online gift shop, mainly for new age items (candles, crystals, buddah's, fairy's, incense etc). Oh and i made a ram the other day for the church display of noah's ark... Mine is the cream one.

let it snow, let it snow, let it snow

Happy New Year. It has been snowing since 17th December and is very cold (minus 10 - minus 17). Humidity is 90-99% so i feel very sore and things. been having a flare up since new years eve, i almost missed the new year, and this week, i had a fall on Wednesday in the kitchen (floor was wet), I feel like iv been hit by a bus or some other heavy vehicle. This year i hope to get a formal diagnosis. This has been going on for much to long. I also don't have access to a car anymore, which makes going out difficult especially in this weather. Not steady at the best times. I have been trying to sleep for an hour or 2 and can't, despite being exhausted.

I have been busy sorting stuff out for christmas, i am almost sorted, just got a few more things to wrap. I have also been doing my university course, i got 84% in my first tutor marked assignment, so im over the moon with it. Its not easy studying while coping with this sort of illness. I went to GP the other day for results of my blood test, they said that my red blood cells are much smaller than normal so i have to have those repeated on Monday, also there was somethig about my kidney but I can't remember what she said, i have to have kidney test in about 6 weeks or 6 months again i can't remember. She is also referring me to Rheumotology and has increased my pain killers, slightly. I have to go and see her weekly or something and discuss each individual symptom untill we get to the bottom of the list, with a phsyical examination she can include her findings in the letter. She told me that it's not always helpful to have this label and that it can have serious implications on your life, it has been 10 years now and I have still not had anything done. I mean it's just getting ridiculous isn't it. I have been feeling quite depressed as well over one thing and another, mainly the fact that there is no cure, that i can feel myself getting worse each day, as the winter is setting in. I feel that people don't understand, yes everyone is cold, but they don't understand that for me the cold is not just cold but so much more. they don't understand that no matter what time i go to bed i will still be awake at silly o'clock. Actually thats not true coz i don't have too mcuh of a problem going to sleep, its staying asleep. I went to to bed at about midnight last night was asleep by 1 and woke up 4 times with in 1 hour. By 5.30 i had had 25mins sleep (approx). People can't possibly function on these terms.

What a day. What a week. I went into town on Monday with Anouska. For the first time in 9 years. I walked 3.5miles and i was shattered when i got home. Last night I starting getting a few niggling pains, nothing unbareable, i went to bed about midnight and tossed and turned in agony for 3 hrs, I got up again and couldn't move, eventually went back to bed at 5am, then thought we were being burgled (it turned out to be the rabbit). After getting to sleep at about 5.50am it was almost time to get up again. I had a hospital appointment about my seizures. The dr said there was nothing they could do for me, even though i knew i still cried, ridiculous isn't it. She said it's important i go to all my appointments even though it's hard with my agoraphobia, she said I know its hard. How does she know its hard??! She has no idea. I told her about going into town on the bus yesterday and even that didn't seem to be enough. Then i went to B&Q to get a couple of xmas baubles coz i am going into a flare up and don't know when i'll be out again. I've come home and im even worse than last night and i didn't think that was possible, im physically and mentally exhausted and can't sleep coz of the pain. I am at the end of my tether and don't know how much more i can take of it. It's 2.25am and its just getting beyond a joke. I have to get up at 9am which isn't early I know, as some people are up at 5.30am but for me it's an ungodly hour. That if im honest i'd rather not see lol. I don't know what other fibro patients (i use the term patients loosly it's more like victims) think about when in pain but all i can think about it this illness and how much i hate it. Here's to the day they find a cure! ---------------- Now playing: R.E.M. - Everybody Hurts via FoxyTunes

This is going to be a short post as im in so much pain. My hand has been playing up, going stiff and numb and tingly, i keep dropping things and the pains are shooting up my arm and into my shoulder. Im in agony, i have spent 3 hours crying in pain. The bank have been stupid today and took my money (£74). I have been really stressed because of it and now im in agony. Can't move, its hurts my shoulder to breathe. I need to see the doctor again about this. I need some decent painkillers, this pain is killing me. I started my OU course on Saturday and im now concerned that i am going to fall behind as i can't type properly or hold the pen to write.