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.

Mental Health

I have just watched my neighbour first trying to smash her window with a hammer, then after a while of silence, with the other neighbours laughing at her, calling her names, the police arrived. He didn't get an answer upon looking through her letterbox he saw her lying at the bottom of the stairs. After a while, an ambulance arrived, the police asked us if we knew her name. Which no one did. She was eventually taken away on a stretcher, suffering a broken leg and slit wrists. I feel so saddened by this, having suffered with my mental health for a few years. Seeing my mum also suffer from this horrible condition. To think that she feels so sad and feels the only way out is this, is awful. Having heard that a friend of mine's sister recently lost her life to mental health issues little over a week ago, it's all just so heartbreaking.

I am really sore today... Aching and in pain, I am going to do dinner and have and early night. I have been reading about the connection with Fibromyalgia and PNES (which is Psycho-genic non-eleptic seizures), I have been told i have this but im not 100% sure what it is. They are also known as functional seizures. According to Google there is a conection but not sure what it is or if there is any great significance in it.

Feeling Good

I have been feeling okay for a few weeks... I woke up yesterday in quite a bit of pain, but had to take my cousin for an ante natal check up so pulled myself together, by the end of the day my knees we creaking and aching. This morning my shoulders and elbows and sore. I think i will having another flare up soon. I hope not as my cousin's baby is due in just 10 days time, I would like to be well for this event. I have been focusing on a course i will be studying from home in October and for the foreseeable future. I am doing a BA Hons in Computer Software Design. I am waiting for an assement from Social Services in order to have a shower fitted, as I have trouble getting standing to get out the bath... I also often have seizures whilst in the bath.

Sorry I have not written recently. I have been in quarantine with swine flu for about 3 weeks. I'm still not well, although feel that alot of my swine flu symptoms are just FM now. I am trying to write a letter to my father explaining my condition as I feel bad having not seen him for 3 weeks. He doesn't know that I am ill at all so it will be a shock I think. I am also looking into doing a course in IT. When i have completed it I hope to do a BA Hons in Computing. So fingers crossed. I have pain all over at the moment. Have been feeling pain in my knuckles for a couple of days now. I don't usually have pain in my knuckles so its just something else to add my list isn't it!

I am in bed today, unable to move let alone walk. I'm in agony, was supposed to be going out today but had to cancel, due to imense pain. I have an optition's appointment on Tuesday and hope to get some new glasses. I also hope to go out for lunch on Thursday with a friend, but obviously all that will depend on how i feel. I keep getting spasms in my back, which i never had before until earlier in the week. My brain-fog is unbelievable, my mind is all cloudy (foggy), i guess thats where it gets it's name from. I can't think straight, and when i try to think i get even more confused. I can't remember things and get muddled up easily, it is very distressing. I am going to try and go downstairs to eat, as I haven't had anything today, I ought to take some painkillers also.

 

Won't be able to write a lot today as I am in a bit of flare up. I am sitting on the sofa, afraid to move as i've just got reasonably comfortable. I have been reading a few things on fibromyalgia. Found a little banner/signiture thing that says. Fibromyalgia, a pain in the... well, everything. Thought that was very true. Also read a couple of poems that were very good. It explained the it well. This is one of them : You silently stalked me for many years, If it weren't for you, I'd have healthy inner ears, You tried to embrace me, I wobbled away You then became vengeful on a bright sunny day. You've rid me of work, friends and some family, You've invaded my pride and mottled my dignity, You now wake me in the middle of the night, With back spasms so painful I can't even fight, You're not my friend, so go away, You enjoy seeing me struggle every night and day. You 've caused me embarrassment, strife and grief, No wonder common people find you hard to believe, You wear evil faces from night to day, I've learned now to see them and hear what they say. You've taken from me my independence I once had, It 's a wonder you don't kill me rather than making me sad, Each day I am reminded of your hurtful ways, You gain pleasure from putting me into a foggy daze. My vision may be double, but I can still see, The vice that you hold which you implant for free. They advise me to get out and then say I am lazy, They are the one 's who are sadly so crazy, You must be proud of yourself, you have succeeded, To convince them I am no longer valued or needed. You've whirled me around until I can 't think, I finally stand up but my pride again sinks, I have a poor memory, slight balance and no rest, You invade anyone who strives to be their best. My head and neck hurt and my hips freeze and ache, Bright lights and loud noises send me whirling for crap sake. My mind wants to go shopping, driving and out, As soon as I try, you convey another doubt, I 've tried medications to keep you at bay, But you are too stubborn to allow me to play. I will never surrender to your evil desires, My Spirit is shielded, healthy and admired, You continue to embrace me, while screaming to be heard, I refuse to listen while you 're being so absurd. Although you have no medicinal cure You continue to invade bodies until you are pure, You have no voice, you heartless devil, But be prepared, because I 'm on the level. You 've chosen me to be your messenger, For this I am ungrateful I can assure, I will not speak highly of you nor smother them with lies, You are the one that I have learned to despise. You have ruined my life and altered my faith, For this you will pay dearly upon my own grave. I ask that you not replace me, as your heartless aura demands, Upon my journey back Home, I will place you at Gods Healing Hands. You're not my friend, so go away, You enjoy seeing me struggle every night and day. Anon... I feel very drained and confused at the moment, I can't think straight. Tried to play a game called Bookworm but all the letters were jumping about in front of me.

I have written for a while, im coming out of another flare up. Fell down the stairs again Friday gone, still a bit sore. Bought a new bed its coming week commencing July 5th, a memory foam divan bed so hopefully if i can't sleep at least i will be comfortable. I also got a new memory foam pillow. I used it last night, slept for 13 hours only waking up twice. Amazing. I didn't manage to get to the GP to sort out the referal to Rhumetology so have to make another appointment sometime.

I was very stiff when I woke this morning indicating that rain is on it's way. I have been very stiff most of the day and even more exhausted than usual... I made mash potato for dinner with Pork. I peeled the potatoes and put them in water a few hours before i did the pork etc. I just can't do it all at once. I tried micro sleeping today a friend suggested it. Sleeping for 15mins and then setting my alarm and getting up. It took me 2 and a half hours to go to sleep for 15mins! Not really worth it so won't be doing that again. I am writing a letter for the GP for my appointment on Wednesday, will do a bit every day. Will write down what my symptoms are and how they affect me etc, then we will write a proper letter to the Rhumetologist and hopefully get this sorted out. I hope that 'Auntie' Ashleigh isn't reading this, if she is, don't tell my dad as he doesn't know that I am ill...

Well, on Friday night after my last blog entry I fell down the stairs when my legs decided to stop working... I have a bruised bottom and back and a sore elbow but im okay... I went to the GP yesterday, a new GP. She believes in Fibromyalgia and is going to read all my notes for the last 19years and there will be alot of notes... she is then going to see me next wednesday and we will write a letter to a Rhuematologist who will examine me and hopefully diagnose me. She said that some Rhuematologists like to diagnose Fibromyalgia (FM) and some don't. I feel that whatever the diagnoses and prognosis, it would help me to know. At least then I can try and make the most of my life. I was asked yesterday by a neighbour what Fibromyalgia was, i wasn't really able to explain so said it was like arthritis, it's not really like arthritis though, arthritis can be treated, this can't. Arthritis is in small joints, this is all over. I already have to use a walking stick, I am scared of how much worse I will get. Also my medication has been changed. I am now on 8 paracetamol a day. Which is better than before but I don't think they will be strong enough. Time will tell.

Well it is 8.15pm, I have been up since 8am after just 4 hrs sleep. I am really quite sore, aches and pains. I said that I would go and see a friend today which I did but i feel I may be in bed for a few days. This happens a lot, I go out one day and then spend the next 2 weeks feeling unwell. Unable to move. I am supposed to go out tomorrow but I am not sure if I can. I have bought some frozen pizza's for dinner as I don't want to have to cook. I a,lso got some A. Vogel Atro Bath-Oil, which I find soothes my pain for about an hour. Which is a long time for someone in pain 24hrs a day. I hope that if you are reading this it is not because you suffer from this condition as it is such a horrible illness to have, I wouldn't wish it on my worst enemy.

It is 1.45am, I am in bed, unable to sleep, as usual. I started a menstrual period yesterday and I am very heavy and it is very painful. With that and my other symptoms I am in agony. I have been taking 3 ibruprofen tablets and 4 codeine phosphate (60mg) a day for the pain and they're not touching it. I also take 3 mebeverine tablets a day (for IBS), 8 tranexamic acid and 3 mefinamic acid tablets a day for bleeding and 1 citalopram for depression. It seems that the Dr's don't know what causes my problems so just stick me on various tablets. I meant to go to the GP today but I was unable to walk so couldn't. I feel exhausted but can never sleep, and when I do, its never for long. I wish so much I could have a full nights sleep. Or wake up in the morning energised. Or wake up and not be stiff or in pain. But every morning I wake up the same and I wonder how long this will last. Surely it can't last forever. Although it's already been a number of years and I feel it will be lasting forever. I was very tearful earlier, everything gets on top of me every so often, then pain and fatigue, the depression not helping. I have also developed mouth sores today, which I don't think I have had before. After checking the internet, I found it's another symptom of Fibromyalgia. The problem I see to have is that the pain is on the inside and people can't see that I am hurting. I feel that it is all in my head but then sit and think well this pain is deffinatly real! It seemed like a good idea when I thought about starting a blog, however with fibro-fog it is difficult to concentrate and this takes a fair bit of concentration. So I apologise if I don't write as often as I maybe should. I will write when possible.

Hello, I will tell you about my symptoms and how they affect me in my everyday life. I have been suffering with this strange illness for a few years, shortly after suffering sexual abuse and rape. The Dr's have referred me to several specialist's and I have had lots of tests. All of which have come back clear, the doctor's don't know what is causing my problems and how to treat me. My symptoms are:

• Widespread Pain
• Chronic Fatigue
• Migraines
• Seizures
• Weight Loss/Gain
• IBS
• Incontinence
• Sensitivity to Weather, Lights and Odours
• Heavy and Painful periods
• Morning Stiffness
• Nausea
• Dizziness
• Depression
• Fibro-Fog
• Insomnia

There are other symptoms but I can't remember them at the moment so I will add to the list in due course.

I believe that I have a condition called Fibromyalgia however my GP doesn't believe that this condition even exists, so I have a slight problem there. I am unable to put my case to the GP as I am generally too ill.

I am not sure how to discribe the above symptoms to you but I will have a go.

Widespread Pain - If you can imagine having aches in EVERY part of your body as though you did 10 rounds with Mike Tyson the day before. That is what my pain is like but 24hrs a day, 7 days a week, I don't even get bank holiday's off lol.

Fatigue - Have you ever felt not just tired but exhausted? Perhaps you were up all night with a sick child, or finishing an essay? Usually 1 or 2 good night sleeps solve this problem. For me it doesn't I feel constantly exhausted.

Insomnia - It takes me about 2 hrs to fall asleep and then I am likely to wake up at least once an hour during the night.

Seizures - I had a massive seizures in 1994 which left me in intensive care aged just 4 yrs old. I was diagnosed with Temporal Lobe Epilepsy but not treated for the seizures as I never had any more. I then started taking prozac in 2008 and the seizures started again I was having upto 5 a day. I stopped the prozac and the seizures continued. I had a 24hr EEG and the Neurologist told me that they are not epileptic. I still have seizures although only 3 or 4 week, because they are not epileptic they will not give me any tablets to control them.

Sensitivity to Weather, Lights and Odours - My symptoms are MUCH worse if it is cold or humid. Bright lights seem a lot brighter to me and I become quite unwell with flashing lights, probably more due to the seizures than anything else. I also have a heightened sense of smell. I can smell some things white a while before anyone else can. I can also smell odours that some people can NEVER smell.

Fibro-Fog - Hmmm, this is quite a difficult one to explain. There are many syptoms to Fibro-Fog, such as:

• Mental confusion and fatigue
• Loss of short-term memory
• Inability to concentrate
• Impaired thinking
• Absentmindedness
• Inability to recognize familiar surroundings
• Disorientation
• Inability to comprehend written or spoken words
• Trouble with directions
• Short attention span
• Acquired dyslexia (includes difficulty speaking known words)

I was making a cup of tea and a bowl of cereal the other day I poured the cereal into the dish followed by the tea-bag (also into the dish), then filled the kettle with milk. I laughed about it but felt very sad about it as I feel that I am losing 'it'. Last night I put had a pan on the hob with vegetables in it and was putting the yorkshire puddings into the oven and yes you guess it. I put the yorkshire's in the pan of boiling water. I burst into tears...

When I am feeling upto it I intend to write in my blog and keep a diary of how I feel etc.

Thank you for reading.