Name: Jodie
Age: 21. Nearly 22.
Where I live: England
Conditions: Fibromyalgia, Partially Prolapsed Disc, Depression, Anxiety, Stress, IBS (Bowel and Bladder), Migraine, Sinusitis, Suspected Gastroparesis, Insomnia...need I continue? xD
How they effect my daily life: Constant Pain. Suicidal Ideation. Panic Attacks. Anger. Can't eat properly, sleep properly, relax properly. Makes me prone to aggression. Makes me vomit for hours on end.
My medical care: Intermittent at best. Diabolical at worst.
Do they treat me fairly? Questionable. Up until the last couple of years, I was pretty much written off as a hypochondriac with mental health issues. Had to be suicidal before they put me onto anything stronger than OTC painkillers. I literally asked my own mother, at three in the morning, to crush all my pills into a glass of water and let me drink the lot. That's the point I got to and it STILL took months before any actual progress in my diagnosis was made despite me being with the local Chronic Pain Team since 2008/9. Even with my diagnosis, after a few months I was deemed to be able to cope on my own for the most part without any outside support and I was informed I had made one of the quickest 'acceptances' of my situation they'd ever seen. I'd been suffering for eight long years with no straight answers. Just theories and excuses-the relief to hear the words 'You have Fibromyalgia' was unimaginable.
Any unconventional treatments you use? Wouldn't call them 'treatments' in the traditional sense but Alcohol and Smoking are two of the main 'consistencies' in my 'personal' treatment plan. Judge me all I want but it's the sense of control I get from them. I can decide to have a drink or have a cigarette whereas I don't get to decide on the mind altering agony and distress my conditions cause. I also taught myself to walk again by going out with my friend and her two year old son. At first, I'd have both of my crutches but would pop them on the pushchair and use that to support myself, then I dropped it to one whilst still using the pushchair to support myself, then I'd leave them in the car and only use the pushchair. Then one day, my friend's little boy wanted me to hold his hand as he toddled around the town. Seriously, you can't say no to this little guy's face so I left the pushchair and went to take my stick...he pushed it away and just told me to hold his hand. He'd stop and watch me walking and stopped when it seemed like I needed a break but he'd encourage me to 'toddle' with him, squealing encouragement and babbling away happily.
If it wasn't for him, I'd probably still be struggling to walk without aids. Sure, sometimes I need my crutches or my wheelchair but it's less frequent. To be honest, he was more use to me than the months of physical therapy I'd been through. He had no reason to criticise or make me feel inadequate-I'm just his Aunty JoJo with the funny legs that needs some help sometimes.
What hobbies or activities are you still able to do? Reading, Writing, Studying and Researching. That said, I'm no where near as competent as I once was. I find it difficult to concentrate, fall asleep easily and find it hard to find the drive to do any of them anymore...which is most definitely an issue at college.
Any advice to our readers? Try Cymbalta. It has been a miracle drug for me. Obviously, I know drug treatments are a minefield for Fibromyalgia patients as what works for one won't work for another but what have you got to lose? And Domperidone. I'd still be living off Pickled Onion Monster Munch, Peperamis, Strawberries, Mini Iced Ring Doughnuts and Pepsi without it.
Anything you'd like to add? Try and accept that life isn't going to go back to the way it was but do not for a MOMENT let anyone make you think you're not allowed to grieve for what was and what could have been. You are effectively suffering a bereavement. The loss of your former life for your present life. It's going to be hell, and there are going to be some days when your brain is telling you that enough is enough, but if there is anything-anything at all that can make you think 'You know what? Let's see how tomorrow is' even if it's just a bacon sandwich the next morning or a chat with a friend, try and hold on to it.
If it's still bad in the morning...I understand.
