In 2015/16 I was diagnosed with fibromyalgia or as my pain consultant who hates that term referred to it "chronic intractable pain" (I think this is worse because what that means is; constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated. But then, I am stubborn).
Fibromyalgia is a chronic condition that causes pain due to issues with the muscular skeletal system.
So how did it all start? I got numbness and tingling in my right arm from the elbow down. I'd always suffered from sore and stiff joints and had growing pains a child (some of which is obviously due to the HbSC which I didn't know I had at the time).
Anyway, it got to a point where I was in so much pain from head to toe, I couldn't control it. I was taking an absolute cocktail of anti-inflammatory drugs, opioids and anti-epileptic medication (gabapentin! The most horrible drug ever, for me personally!)
You see, fibromyalgia causes;
allodynia (experiencing pain from even a very light stroke of the skin! Bras were a nightmare!)
fatigue
muscle stiffness
difficulty sleeping (including non-restorative sleep)
cognitive dysfunction (known as "fibro-fog", problems with memory and concentration)
digestive issues (IBS, intolerances, allergies etc)
I was an assistant head teacher for child protection and safeguarding at the time, working crazily long hours in very emotionally charged situations, medicated up to the eyeballs and the mini me was 18 months or so at the time. It was quite possibly one of the most challenging years of my life. I was in and out of hospital, GP, out of hours, scans, tests etc, no one could tell me what was wrong. It got to the point where people including medical professionals, were saying it was all in my head because tests would come back just within normal range etc.
You see, I had gotten to stage 5 out of 6 on the fibro-scale "You have already quit your job, or you have been let go due to ill health. You are asking loads of questions about permanent disability and how long it takes to get it." (Click here for more details)
The turning point was seeing an occupational health specialist in Jan 2016 who took one look at the list of responsibilities work had provided and my drug list and asked how I was still functioning and getting out of bed as most people would be zombies on my medication. That is when the lightbulb went off. So, I made a radical choice. I decided to quit teaching, come off the gabapentin, come off the opioids and the anti-inflammatory drugs and take control of things more. So, I requested to change medication with my pain consultant.
This did not go down well and they were not happy with me making such a decision and referred me back to my GP (I was right though hahahaha. I'm not competitive!). I spent days in bed, I started taking antidepressants to help with the cognitive aspect of the fibro, that was a tough decision. I requested allergy tests and thyroid function tests etc. Discovered I was now lactose intolerant and I fought.
I fought to get my life back. To enjoy playing sport again, to enjoy having fun with my son, to enjoy life but without some of the responsibility and stress and strain. It was hard. I loved teaching. I loved those children almost as much as my own (they used to buy me Mother's Day cards and nicknamed me wonder woman). I still have constant pain but I manage to keep it to a minimum of aches and pains and rarely get to the point where I am out in bed for days unless I get a virus/bacterial infection or something else or I overdo it massively. It is all about pacing and for those of you who know me, I am not an endurance athlete, I'm a sprinter. But I learnt and I am still learning each day.
I decided to retrain as a diagnostic radiographer, 30 hours in 4 days plus a study day while on placement and when at university, travelling to and from Ipswich (130 miles a day) 3 times a week and, 3 years later I am hoping to graduate soon!
I got a job at a major trauma centre 9 months before I was due to graduate and should start there in October once fully recovered from the hip operation.
(Caveat, I couldn't have done it without the help of my family and amazing friends, you know who you are!)
For more information about fibromyalgia, please check out the following links;
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