My blog while attempting to get to grips with Fibro.....please feel free to read and comment :)

Well, it's now been 2 months since my diagnosis. I should start at the beginning, and go from there.

I'm 28, a mum of two girls, T is 9 and G is 6. I am married, and I am currently studying an Access Course at college, and am due to start a degree in Religious Studies in September 2012.

This all began on 30th November 2011. I had walked to asda with my mum and my girls, we had eaten dinner in the cafe and done a small shop. I love my celebrity magazines and I'd gone to the counter to pay for the mags, when I noticed a doughnut. It wasn't on a low or high shelf, at the same level as me, and I picked it up. I immediately felt strange. It's hard to explain, but I felt very dizzy and pins and needles filled my body. Then came the head pain, I found my mum and said 'I feel funny' She sat me down for 10 mins but the head pain and the dizzyness got worse, then my face started to droop on the left side. She carried me to a taxi and got me home, by which time I was in and out of consciousness. I remember feeling so heavy, like I'd been filled with concrete and just wanted to sleep. She called 999. They said because of my age it wouldn't be serious and told my mum that NHS direct would call her within an hour. She screamed that she couldn't wait that long and ran to find someone to take me to hospital. She found a family member and he drove me to hospital.

By the time I got there, I had come round a little more. We walked into A&E and they didn't even book me in, rushed me straight to a room and began testing everything. My heart rate was irregular and the slightest pressure on my legs would result in a whole body tremor. They came and took blood, temps and what not and disappeared. When the Dr came back, he decided it was a panic attack. I have a history of bipolar but knew this was untrue. He wouldn't listen and sent me home with diazepam to keep me calm that night. I returned to my GP the following day, he said I wasn't eating enough and decided I need to do a stool sample. I did this which came back normal.

1 week later, I returned to the GP's. I was struggling with a tremor and in massive pain, everywhere hurt and I had no energy. He sent me for bloods and gave me beta-blockers. The bloods were normal. By 10 days, I was needing crutches to walk and could barely lift my head off the pillow if I had to move and go to the toilet. I was exhausted by the slightest movement and the pain was just getting worse.

I returned to the GP, and this time got some answers. He explained that I'd suffered a minor stroke in November. It had left some brain damage after going so long without knowing. I told him about the pain and he prescribed tramadol. I felt so pleased that I might finally get some relief. I didn't. The tramadol didn't touch the pain, I was so upset.

I saw an emergency GP who explained about fibromyalgia, he said my symptoms fit and explained the condition. I came home and researched it online, worryingly I also found many other conditions with similar results. I printed some info about fibro and took this to my next appointment. The GP then sent me for every blood test he could, they tested everything. He told me to rebook to see him 4 weeks later. I was so hopeful that something would show, a lack of a vitamin or a chemical, he would give me a tablet and I would be back to the old me. When I went back, I saw his face and knew this hope was in vain. My bloods were all clear. I cried, I should have been so happy but I was so upset that I still didn't know what was wrong. He told me that he had been looking up fibro and had spoken to a friend. It was then he gave me the news, I had fibromyalgia and ME. He said the two were causing the symptoms I had, then he told me that there was no cure. I asked about pain relief and he told me I had tramadol and then morphine and then nothing else to go on and I would end up in a wheelchair and unable to fully control the pain.

I have a very high tolerance to pain medication, and he predicted by 35 I would be on the maximum morphine. I was devastated.

I have dreams of teaching, and travelling when my girls are older. I was, and still am, determined that fibro will not kill this. I was back to college the day after the stroke and have had 1 day off since. All assignments have been handed in on time and I haven't let it slow me down.

However, the fibro fog is driving me mad! That alongside the stroke has meant I have had to ask for help with revision. I don't know how my brain holds information anymore, so I am seeing a lady at college to help with that. I have applied for DLA and for DSA for uni, and they have been amazing at sorting out support for September. So I feel confident I can complete uni and am aiming for nothing short of a First in my degree. I am then planning to complete my PGCE and become a secondary teacher, hopefully by 2016.

I am struggling with some bits though. I was so independent before, I would go out and walk everywhere, I'd visit friends and family and go shopping without a second thought. I can no longer do this, I can't walk more than 20 steps without the aid of my hubby, the crutches or someone to hold onto. I have to rely on others to help me to appointments or to the shops and I hate it. I looked after my god-daughter yesterday. She lives a 5 min walk away, I picked her up and then took her home and today I have been stuck in my bed in too much pain and too exhausted to move. It has taken me over an hour to write this because typing causes too much pain in my shoulders. I am reliant on tramadol but can no longer stand to cook myself a meal, or put my hair up. I rely on my eldest daughter and my husband to do things and it drives me mad.

I am determined to find a cure, someone, somewhere knows something and I am literally willing to try anything. My GP laughs at my hope, and I pray every night that I will wake up in the morning and be better, I've eaten so much fruit, veg, and tried so many different concoctions of foods that are supposed to help, but so far nothing.

I am waiting for a referral to the Rheumatologist and the FIbro Team for my area. I have a friend who has fibro and she is my life line. I am struggling to eat and drink, my body forgets how to swallow. Which means I don't like going out for tea in case I choke. I shake a lot, and tremble when I'm standing. I sleep when I can, but am always exhausted. I am in constant pain, which spreads throughout my body and leaves me exhausted. Even my skin hurts some days which is crazy.

I know some people have walked away, sick of me 'moaning' or telling them to be thankful for their life and their ability to get out and do things, and I still push myself everyday. I don't want to sit and let this disease take over me, but then I push too hard. I have still to learn my limits and be strong enough to stick to them. I know I have to stop comparing myself now to the me of before, but it's so hard. Luckily, I have some amazing friends and an amazing husband and my children are my world.

I will update this as often as I can, maybe not every day but certainly when I can. Hopefully I can give hope to others and they can laugh and cry along with me on this journey. I always say 'A stranger is just a friend I haven't met yet'

12 Replies

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  • i feel for you, i remember life before fibro, take care,

    sending love and hugs.x

  • Thank you Susie, I love your doggy profile pic :) sooo cute xx

  • hi mrs mills

    i too remember the "old" me...i was so independent...i now depend on my 16yr old son and feel so guilty. im a single mum with a 6yr old daughter too and find it very hard to 2 "satisfy" her...she asks me to take her to the park,which is just behind our house, and i cant do it most days...fibro is alot of change in life and hard to cope with but we have to cope...im hurting everywhere too...i just got back from Disneyland Paris and we only managed to go on 3 rides!!!!...i was and still am so stiff and in so much pain its unbeleiveable but i know i did my best there... at least the fireworks and parades satisfied her lol...anyway,ive babbled enuff for now.... bye 4 now and take care

    Donna xx

  • Thank you Maddonna, it's hard to resist the urge to be and do things that I would have done before I got ill....I hope this acceptance will come in time. At the moment I am still in denial which doesn't help too much! Hope your well xx

  • i too am in denial...im new to fibro and cant accept it either so maybe we can go through this together??

    Donna xx

  • AW that was lovely to share your story with us and good luck with the teaching anfd yoyr quest to find a cure for fibro love to you diddle x

  • Thank you Diddle :)

  • I try not to go over the things I used to do and try and find new things that I can do now without causing too much pain.

    Thank you for sharing your story Mrs Mills, I'm sure you will inspire many of us.

    hugs x

    Anjie

  • Thank you Anjie :) xxx

  • thanks for sharing,i admire your strenth to carry on,life is cruel for someone so young like yourself,just rest up as much as poss&i look forawrd to your blogs hugs x

  • hugs i was about a similar age when it happened to me but a lot of my symptoms was to do with my paralysis i sympathise but you are trying to do thing s good luck for the future

  • it is a journey just like jesus did as i say weare not alone love and kisses xxx

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