Book/ Diary

On advice from my acupuncturist I've started writing my fibro story. I thought you guys might like to see my first little bit...

I guess the best idea is for me to get the worst out there. For the last few years, I've been hoping to hear a doctor tell me I was dying. Not because I'm suicidal, and not because I don't want to live, but because I knew they couldn't make me better. I knew there was no cure and I knew that life, as it was, sucked balls. This story is not straightforward, and it offers no magical cure. All I want to do is give you an insight into the person I am, the person I was, and the person I was trying to become. Maybe I'll manage to make you rethink your judgement of me, or those like me with so called invisible illnesses. Maybe I won't. If there is one thing that the last few years have taught me? It's that you have to try. I'm Sam, I'm 23 and I have fibromyalgia. I am not lazy or a drama queen. Nor am I making it up or just depressed. I have been tested for every form of cancer and disease in existence and they have all come back clear. But what does this actually mean? What is fibromyalgia? And how did it ruin my life?

I'm awake once again at half 3 in the morning. I'm tired, but I can't sleep. It is important to note however that it is for a different reason than usual, I'm excited and not in pain, and I guess this alone is cause for celebration. Me and Matt, my husband, are moving to Scotland tomorrow, and we are staying the night with my friend, Becky, to break the journey a little. It's always great catching up with old friends, particularly when a lot has changed over a short period of time, and that is what has inspired me to start writing this now. We were discussing how the last few years have effectively been our 'lost' or 'exploratory' years. We have both learned a lot about ourselves, physically, sexually and emotionally and whilst we are thankful for this, these years have taken their toll. I'm tired and I'm ready for a break, but should I have the option, I wouldn't choose to delete those years from my past.

Me and Becky have known each other 8 years now, and they really have flown past. To try and encapsulate everything that has happened over the years is difficult, but I'd like to try. Sadly, and probably much to the dismay of my old English teachers, this story doesn't have a conventional beginning, middle and end, but rather is part of a larger, continuing saga. There are lessons I've learnt, and things that I have done that I'd rather not spell out, but I think it's important for me to try to piece this all together. To help me with this, I'd like to explain where I started, and where I am now, before delving deeper into the nitty gritty. 8 years ago I was a promising student, with good grades, and good behaviour. I had taken on a main role in the school play, and was going up for head boy, a role I would also be given. I was confident, and head strong, and I had solid plans and strong ideas for what I wanted to do with my life.

The later 4-6 years have changed that boy into the person I am today. My gut instinct tells me this person is 'worse' but I also believe that each of the situations has its own merits. I am now 23, married, and moving to Scotland. I have a chronic debilitating condition called fibromyalgia and I've had to deal with major losses, personally and professionally because of this. I am depressive, even slightly bipolar, and confused. I don't know where I am going in life, and I don't really know what I want to do. I remember in a uni interview I was once asked 'What are your weaknesses?' and I answered genuinely 'Not being able to identify my weaknesses' because it was the best I could come up with. Today I would point out that my weakness is that I can never see the positives, and I never see my strengths. I don't actually think my strengths and weaknesses have changed, but rather my self-loathing has altered my perception of them.

So join me if you will whilst I review a few major plot points of my life. I could do this in a nice neat chronological order, but in honesty, I'm too 'outside the box' for that. Plus some of the parts go together well, even if they are 5 years apart, so I want to put them together. To lend you a hand, I'll include my age whenever I change when I'm talking about. I don't pretend to remember everything and I hold my hands up that there is a strong possibility that time has changed my memory of events. I'm going to try my best, and that's more than good enough for me.

7 Replies

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  • Sounds a wonderful idea Sam, it's a great start and I am sure all of us can relate to what you have said so far. I certainly can. The more people who write their stories the better in my opinion as it increases awareness which is something we all so desperately need. There are so many of us out there who suffer every single day of our lives and yet are silent voices and nobody seems to hear us. I firmly believe one day this will change and globally everyone will know about Fibromyalgia and the impact it can have on a human life.

    I take my hat off to you, keep plodding on with your book and I really genuinely hope you manage to get it published and that it does well for you and for our cause.

    Well done! :)

  • Hi Sam, I am already enthraled next chapter please. Moving to Scotland is an impressive and masterly thing to do I wish you luck and happiness in your new home, may your Fibro be manageable for a while so you can enjoy the clear air and lovely people you will meet.

    Onwards and upwards xgins

  • Hi Sam, good for you, I think it's an excellent idea. Hope one day you will get it published and we can all but it. Good luck, wait for the next installment

  • Sorry meant buy it lol

  • Wonderful I love the idea of writing about your experiences and loved every word. I love the words at the end. I have reached that place in life where i accept what i do is good enough for me. I have been writing words down for a while they come in the form of poetry and seem to be taking me to a place of healing. I hope writing helps you and i know it will help others to read your experiences.

    take care lesley

  • Thank you all for your kind words... Here is the next part :-)

    19.

    I know hospitals aren't supposed to be nice but when I was checked into Aberdeen Royal Infirmary, I was in for a cruel awakening. You see I'd never been in hospital before, not that I could remember anyway, and the sheer boredom and blankness of it all was underwhelming. I had a throat infection, tonsillitis is what was suspected, but the emergency doctors had decided it best to put me on a drip to help rehydrate me. After running away from the needle a few times, they got a line in and started pumping me full of paracetamol and water. The novelty of it all was quite cool and I remember being gutted when they discharged me later that day because I was looking forward to my friends visiting me in hospital. That would have been a story and a half for my freshers year. I was sent home with a prescription for some antibiotics, I can't remember if they had done a blood test at this point, but I don't think so. I was tired and stressed as I hadn't been sleeping well - my first big exam was the next day, but I felt well prepared and so decided to go to sleep early, about 7PM.

    That night was, at the time, the worst nights sleep I'd ever had. I was waking up every 20-30 minutes colder and colder. The snow was falling outside and my radiator didn't seem to be working. By the morning I had dragged every item of clothing and every coat onto my bed as extra padding. It was about 10AM when I woke to my alarm, the exam was at 1PM. I always kept a bottle of water by my bed and took a sip from it. Being the clumsy idiot I am, and trying to drink upside down, it came shooting out my nose. It was then I began to realise that not only was it still freezing but that I was seriously sweating. I'd drenched everything on the bed and my clothes were heavy because of it. I dragged myself to the kitchen, wet hair and all, and made a cup of tea. I tried to remember the previous night because judging from my head; I must have been out drinking. But I hadn't. Maybe it was the antibiotics? I remembered and popped another pill for the morning.

    I put the tablet in my mouth and took a swig of tea, and I nearly drowned. The tablet was so freaking huge it was trying to choke me. I managed to spit it out and took some more tea to help wash down any residue. It came shooting down my nose and I couldn't swallow it. I was no longer half asleep and I was definitely no longer upside down. I thought to try some water, as it might be thinner, but that too came spitting out my nose. I grabbed an ice lolly to attempt and got my car keys and it was only when I couldn't remember how to unlock the door that I decided I was in no fit state to drive.

    I went to the girls flat to get one of them to drive me to the hospital. Jen E answered the door and her mouth fell to the floor. In a thick Glaswegian accent I was told that 1) I looked like shit, and 2) I had lumps growing from my neck. By this time my speech was seriously problematic, as to be honest was my breathing. We rushed to the A&E and I was admitted immediately. Jen E had to go for her exam, and it became increasingly apparent that I was destined to miss mine. The nurse came to put a new line in me and remembered me from the day before. This time however I didn't fight her.. I was so desperate for the water I knew the line would give me that my arm just kinda flopped out so she could take blood and insert a line. I barely reached the hospital bed before falling completely asleep, and in that state I'd stay for about 24 hours.

    I woke up with a consultant and my auntie standing around my bed. I had been tested for mumps due to the lumps in my neck and that had come back negative. They then tested for glandular fever, which came back positive. I also had managed to contract viral and bacterial tonsillitis at the same time. I never do do things by half. I was told that the paracetamol would bring down my temperature and the anti bios would help the tonsillitis. As for the viral tonsillitis and glandular fever, that had to treat itself. I would be in hospital another 3 days before my auntie came to take me back to her house.

    I saw her doctor the following Monday and she prescribed me a yet higher dose of antibiotics and a codeine based painkiller. I then spent the next three weeks in varying states of comatose, asleep, and eating. My temperature refused to come down. With a heavy heart I decided I needed to go home, to mum and dad, and away from uni for a bit, just to get better. By this point my throat had stopped hurting and I was eating and drinking normally but I was still spending more time asleep than not. I let it rattle on for a few more days after arriving home and then I saw my own GP. He signed me out sick from work and uni for a month, then and there. He told me I sounded as though I could have post viral fatigue. I had no clue what the hell that meant, and I was too scared and tired to ask. He ordered some more blood tests and sent me on my way. It was at this point that I realised I had to smarten up - so I consulted doctor google.

    The most fun part (and yes I mean that sarcastically) of post viral fatigue syndrome as I discovered is the vast number of different names it can go by. Having been signed off with post viral fatigue, I wondered if this was the same thing as post viral fatigue syndrome. I eventually decided, based on an extremely specific test I conducted called 'that sounds like me' that I did in fact fit this post viral fatigue syndrome group. Excited I began to search for a cure. Lots of bed rest and eating well. I remember thinking, yeah right. This went on from one month to the next - eventually I was being signed off from work and uni in 3 month intervals. All the while I tried to keep up to date with lectures and my studies from home but it was as if someone had pressed the off button in my brain.

    I decided to test the waters and return to uni around May. I was by no means better but I had made the decision to fight against the blooming syndrome that I couldn't quite remember the name of. I failed within a few hours. I went back to sleeping 48 hours at a time and I wasn't able to re-engage with uni work, uni friends, or the life I once had. I just wanted to sleep. My dad flew up to Aberdeen, I packed my car up with everything I owned and he drove us home. I didn't leave my room for about 2 weeks. I felt defeated, I felt worthless, and I was a failure. My grandparents and extended family didn't understand quite what was going on and neither did a lot of my friends. Even I didn't really 'get it'. My mum dragged me back to see the GP who put me onto antidepressants. I felt seriously like a looser at this point. I had become depressed because I was sick and I felt pathetic for it.

    The doctor also told me that Prozac had been seen to help people with post viral fatigue, and I had high hopes. I still take Prozac today but I'll tell you a secret. It doesn't work, at least not for me. As summer rolled past and I got further and further into the depths of depression, I managed to return to work at a local supermarket. This wasn't because I suddenly had the energy or anything miraculous like that, but purely because I needed the cash influx. I worked and slept, that's all I could manage. I had got it into my head that this meant I was able to return full time to uni. Looking back I really don't understand how I made that decision but I did. As July arrived, I packed my car, and drove back to Aberdeen for resists. I moved in with a guy I had been seeing, a guy called Steven, I've always been a sucker for love. I felt that maybe this was the end of the dramas and trouble. Maybe I'd finally be able to pick up where I left off.

  • Already compulsive reading Sam, you have a definite talent. I like your modern style of writing, I really do. You cover a lot of issues that I think people will find illuminating and refreshing as well of course as the distressing aspects of our illness. Brilliant job so far, well done, keep going please - I am hooked!

    This could really take off for you, I hope it does. :)

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