Fibromyalgia

Luckily I was able to reach the intercom and my colleague was able to help me down the freezer, down the stairs into a car - straight to the GP. The GP (who had no idea what was going on) decided that I had a hernia and I needed bed rest, as flat on my back as possible. After four weeks of bed rest (boredom, fatigue, dull and stabbing pain, uncomfortableness etc) I decided that this was not what I signed up for. I contacted my physiotherapist (who had been supporting me throughout my younger years of being an amateur gymnast), who came to the house I was living in at the time (I was still bed bound) and told me that it was certainly no hernia and bed rest was the worst treatment ever! It took me six weeks to walk and cycle again (us Dutchies cycle everywhere) and about a year to get my ever depleting energy levels back up to reasonable levels.

I received Dutch incapacity benefit and was deemed fit enough to work for 18 hours a week. Of course not in my former profession! As the country needed secretaries, I went to evening classes, paid for by the government (wanting me to integrate back into working life as soon as possible). I so not wanted to be a secretary (they all seemed very proper, very decent and very samy samy).

My fibro flares came and went with a regularity of working 18 months, off sick for 6, finding a new job, working 18 months, off sick for 6.. Until I found a new challenge; study and work in HR. Although not so much in love with it as I was with being a chef, it was possible to have a reasonable work / life / fibro balance. As long as I did not work more than 18 hours a week, I could do this!

It took me seven years (and numerous painful, not so painful, mere uncomfortable tests) to get my diagnosis; by elimination and a pressure test I was convicted to a life living with Fibromyalgia. There was no cure, there was no medication (smoking weed did help - and was/is not illegal in The Netherlands - although this did not combine well with working). I tried all sorts of things, from a gin massage to acupuncture, cutting out alcohol, carbs, wheat, tomatoes (no idea why that was), aroma therapy.. I drew the line when I was encouraged to have a bean-only diet! I love food - don't take away my food! I did however lost a lot of weight, as when I was/am in pain, I felt very nauseated and not eating seemed to help me not throwing up.. The only temporary pain relief I had was the weekly swim (bobbing) in the especially extra heated swimming pool.

Anyhow (fast forward a bit), I had a bicycle accident, ending up with a concussion and another massive fibro flare. It was not as bad as the very first one, but bad enough that my energy was beyond drained. I was told by my incapacity doctor that I probably had to get used to never working again. Thus a mental and emotional breakdown followed prompt. Thank God for Mental Health Therapists!

So, when boyfriend (at the time) asked me to come and live in the UK (at the time of writing this article, 17 years ago), I packed up and moved. It seemed that here Fibromyalgia was more known, I was offered sessions at the Pain Clinic (very helpful), dihydrocodeine (don't drink, drive or work) and amitriptyline (which helped me sleep, but not wake up, so ditched it). Unfortunately, no extra warm pool access.

I went back to contributing to society (part time work) and have been doing amazingly well. No, it has not gone away; I'm still living with Fibromyalgia, I still have fibro flares, fatigue, brain fog (although massively diminished since taking duloxetine), IBS (again massively diminished since reducing my lactose, wheat and caffeine intake), dull pain, stabbing pain, restless leg syndrome, headaches, rheumatic stiffness, skin, light, noise sensitivity etc. Note: when you see me in person, you usually won't notice any of this.

Becoming a Counsellor, Creative Therapist and Life Coach (at the time of writing this article, practising part time for more than 5 years) has also contributed to my work / life / fibro management and flexibility (balance is only a moment in time). Once again I absolutely LOVE what I do and feel that I am contributing to society, not with the pressure of 'having to', but 'can and want to'.

Whatever you do, whatever ailment you have or not have (lucky you!); Self - Care is very very important. Knowing when to listen to your body and when to tell it to shut up. Processing your emotions on a regular basis. Doing something just for you. Be creative (sing, dance, draw, write, take a different route home). Retreat when you need, stay connected with people and the world around you.

I have fibromyalgia. I am not fibromyalgia!

 Kirsty x

 Ps. Anything with ginger is very helpful against feeling nauseated!

Initially published on LinkedIn, 10th May 2019