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My Pain Story

My pain story began when I was about 14 or 15. My wrists and thumbs were causing me agony, my joints would click out of place and lock and I had pressure points on my forearm that we incredibly painful to the touch. I was sent for physiotherapy and ultrasound treatment. It didn’t work and made it worse. They gave up. I struggled through hours of GSCEs with horrendous writing and somehow still did quite well.

My memory fades a little after that until I was 16 and an office junior. My shoulders became so painful I felt sick. They too would lock and click, I could barely lift my arms up and working at a desk made it worse. The GPs said it was psychological and sent me on my way with big pink painkillers.

A few years later I was in more agony than before, and it hurt to put pressure on my hips. The GPs decided because I was so underweight (not through choice, I ate anything in sight, including my families leftovers from dinner!) my joints weren’t supported and they were blistering. I was sent on my merry way again, this time without painkillers.

By the time I was 25 I was living in Brighton and working in the most depressing job possible. I often went into my own world on my walk home from work as an escape from the draining experience that was every day. It was North Road, I looked twice, the traffic had stopped, nothing was coming, I stepped out into the road, next thing I know I was lying on my front looking at my glasses that had been thrown down the street, and my shopping underneath a big white van. I had been hit by a high speed bicycle who had no intention of stopping at the red lights 10 meters away. The bike and it’s rider landed on top of me. The bike was bent and ruined and I was lying in the middle of the road with traffic moving around me and a huddle of wonderful strangers – off duty nurses, The British Transport Police and lots of lovely passers by. They got my glasses for me and called an ambulance. I could hear the sirens for what felt like half an hour while the ambulance was stuck in traffic.

I was the third person that day to be hit by a bicycle in Brighton and attended to by that crew. They told me it was a miracle nothing had been broken. They checked me out, told me I’d feel like I’d lost in a rugby match the next day and sent me home in a police car. There was nothing a hospital could do. The injuries came out of the next couple of days and I still have scars from the massive bruises around my pelvis. I had tyre marks down my entire leg, my elbows and knees were cut and swollen, I was in shock and I felt incredibly awful.

I assumed within a few days I’d be better. But the pain never went away. That was three and a half years ago. Now,  my pelvis cannot take any pressure at all, my shoulders are constantly in agony and as the years have passed my knees have started popping out of place, my back has given up and I am exhausted, weak and very unwell.

It took 6 months to diagnose fibromyalgia, and I realise this is quite quick in the fibro world, but that 6 months of testing and ruling out a large number of awful degenerative conditions was a scary time. In the end my rheumatologist told me as I did not have a degenerative condition, he had more important people in his waiting room to attend to and discharged me back to my GP. I’ve seen about 12 GPs since then, few of them know what to do, or really seem to care.

I finally saw an on call GP a few weeks ago who prescribed me pregabalin. While my sleep has dramatically improved, the pain has not. Another on call GP this week referred me to pain management. I’m sad it’s taken over three years for this referral, but overjoyed someone listened to me after all this time.

I have dabbled with mindfulness and meditation and recently starting practicing about 5 times a week to help me relax and cope with the pain and exhaustion. I’ve also taken up yoga which helps ease the tension in my muscles and is slowly building up my fitness again.

I used to run 5k and 10k races for Cancer Research, I was accepted into the Territorial Army, I spent hours on the running track at the gym and I walked everywhere at high speed. Now I have a bus pass and take the bus for just one or two stops.

I now volunteer for FibroAction as an admin assistant. I also work 30 hours per week and I am half way through a degree in politics with the Open University. I;ve written some of my best assignments from my bed! I can’t garden any more so I bring home fresh flowers from the market every week. I couldn’t mix cake mixture so I bought a pink mixer. I can’t always cook so I ordered in some meals. I’m slowly but surely finding ways around my illness despite it worsening.

My latest project is an online stationery shop http://www.trinnys.co.uk, and this will also feature at Brighton Open market during warmer months. This may be the key to working from home, in my fluffy pjs, cats by my side and laptop in hand. So even if it’s a bad day, I can still get to work.

So there you have it. My pain journey has probably only just begun, it’s ever changing, and I remain ever hopeful.

Karen xx

13 thoughts on “My Pain Story

  1. I wanted to cry – my own story followed such a similar path. Doctors who thought it was all in my head. Rheumatologist who blamed me for NOT having arthritis! 20+ years of struggle, but now I’m in a place where I have my life organised so as to pace myself, and I try to focus on what I can do rather than what I can’t. My therapy is my art journal http://atcexchange.blogspot.com and, Like you, my cats!!

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    1. Thank you for reading Rosie, it’s always nice to know we are not alone. Art is a great form of therapy for many so it’s great you’ve found that as an outlet. I look forward to having a look through your journal.

      Karen xx

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  2. Firstly I just want to give you the biggest internet hug in the world ❤ Reading this bought tears to my eyes, especially the part when you were hit by a bike that is just absolutely horrific and I can't believe you were just sent home! It's amazing how similar the stories of other Fibro sufferers I know have all been – one healthcare person that I saw tried to tell me I'd caused the illness myself by being an over-achiever which is probably the most infuriating thing I've ever been told. I'm a big supporter of the NHS but I really do find their lack of treatment for this illness just appalling. I was referred to the pain management clinic too and can't honestly say it did much good for me (it took me three years to get referred there too) – it feels like we're just left to suffer on our own and get on with things. I'm sorry this comment is turning out more negative than I intended it to, I just wanted to say that I completely relate and understand to what you've been through and it just isn't bloody fair at all. You seem so positive though with the things you're managing to do, I really admire you ❤
    Lots of love and gentle hugs, Holly xxx

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    1. Thank you for your lovely message, so many of us have had similar experiences.
      The way you were treated sounds awful, people are so dismissive and I don’t think they realise how upsetting and patronising it is to us.
      I love reading your blog and it’s really exciting you’ve set up your fashion blog too. It’s a huge positive for you 🙂

      Look forward to keeping in touch.

      Karen xx

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  3. So sorry to hear your pain story started so young. Great to hear you work at FibroAction. I am loving your new flower image. PS I can never add your posts to my Pinterest account as they require an image: Pinterest is an image sharing thing in reality

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  4. Hi
    So sorry to hear about your pain journey mines been much the same I was very sporty till 1990 when I was knocked down at a pelican crossing on green my pain started not long after that my knees kept dislocating so ended up having 3 ops over the yrs. was seen by 2 rheumatologists one said I was depressed the other diagnosed fibromyalgia. But my g.p didn’t beleive in it so didn’t put on letter to pain specialist only about my ankylosing spondylitis. So the pain specialist examined me and said I was off the scale for it why hadn’t I been diagnosed. He said last year 1st time of meeting him it’s not in your head the pain is real. I have pain infusion every 4 to 6 weeks. Good luck with pain clinic for you.
    Healing hugs
    Jane.xxx

    Liked by 1 person

    1. Hi Jane

      Your story Is quite similar to mine, I think a lot of us have a similar story! I feel lucky I was diagnosed so quickly in hindsight, although 6 months felt like forever at the time!
      I will of course let you know how the pain clinic goes, although I have just been told it’s a minimum 4 month wait 😦
      Karen xx

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  5. Thank you for sharing your story! I’ve recently started my medical journey as I’ve been experiencing severe chronic fatigue. Thank you for sharing and helping to give me a little light at the end of the tunnel. I have no idea what my journey holds but I only hope to continue to come across amazing people such as yourself to keep me inspired and positive! ❤

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