One of the reasons I started actualanna was to document my bid to get back to full health and so I thought it might be useful to explain how my illness came about to begin with.
First, a bit of background: I’ve always been an energetic person, I’ve always said yes to everything and been the type to book in wayyyyy too many things on consecutive days, committing to too much but doing it with a good heart, not wanting to let anyone down or miss out on the fun. At school I took on several jobs plus tackling A Levels, seeing friends and volunteering. I’ve always gone full tilt at life in any way I can.
I’ve had ill health before, when I was 12 until I was about 17 I was diagnosed with ME, and spent many formative years asleep in bed when I should have been out sipping Strongbow from a 2 litre bottle with my teenage friends at a bus stop (isn’t that a rite of passage growing up?!). I got better from that episode but learnt that I couldn’t afford to burn the candle at both ends and attempted to pace myself through my early twenties.
When I moved to London pacing myself got much harder and I threw myself into a full on PR job with crazy long hours, loads of international trips and incredible, career forming experiences. Unsurprisingly, this lifestyle took its toll and in 2010 I had a horrible experience with something called Sarcoidosis which affects people in different ways but gave me lumpy swollen joints that at their worst saw my dad having to help me to the loo. Not my finest hour. I was ill and under hospital review for well over a year, with a shadow on my lung that made me breathless and a very weak immune system. You name the bug, I would get it big time.
I gradually returned to health and began to get some energy back thanks to lots of R&R, a phased return to work and giving up sugar via a homeopath. It was another stark reminder that health isn’t something to take for granted, even in your early twenties.
Then on June 3rd 2014 I woke up and couldn’t get out of bed to commute to work. I felt exhausted and in so much joint and tissue pain in my hands, arms, shoulders and head. Overnight they had turned hot, angry and difficult to move. I feared it was the Sarcoidosis coming back (but later found out this wasn’t the case). After two weeks of hoping it was a virus, I got scared and realised it must be something more serious. It’s hard to list all of the symptoms I have had, but my illness affected almost every system in my body at one point or another. 18 months later and after so many tests, scans and more doctors than I can count who all had many different theories from Lupus to Reactive Arthritis to Schrogen’s Syndrome, they settled on a combination of chronic neurological pain (like a faulty pain switch going off in your brain), Fibromyalgia and ME (again). I’m not convinced this is 100% the right diagnosis, but it’s what I have to work with so I’m going with it.
Over the last year and a half my doctors have tried steroid injections, various painkillers that left me unable to sleep, unable to wake and none of which controlled the pain I was in or the deep fatigue I have felt. They also tried me on antidepressants to control the pain (not for depression, which I didn’t have thankfully).
Aside from the physical symptoms, it had a huge impact on my life. I barely saw any friends, felt isolated from my family up north and felt worried I was missing out on work, on making a life with my boyfriend (we’d just moved in) and generally on grabbing life by the horns. I was 28 and totally lost in a world of pain and illness, of trial and error medication and little understanding of what I had.
I would say the last 18 months have been the hardest of my life.
I gradually returned to work and worked my way up to four days a week. I also took the leap and moved my job to Brighton reducing my commute by almost two hours one way which really helped. Today is day 583 of having pain EVERY SINGLE DAY. Right now as I type this, I have shooting pains in my fingers and I feel like someone is pouring hot water down my right arm. Some days the pain leaves me in bed, but mostly it’s with me in the background, always humming away and moving around my hands, wrists, arms and shoulders. Occasionally it’ll rear its head and take my breath away, usually in an important new business pitch when I’m presenting, or during a nice meal with family, just when I want it least. I daydream about a life without it, and will definitely write more about my experience living with chronic pain in another post. I struggled to find much info or help on how to deal with it, and will definitely share my tips.
I know I’m lucky. I am so much better than I was in June 2014, and can finally say, after 18 months of ups and downs and taking one step forward, two steps back I am on a linear recovery. I have a great job, I see friends and I can say yes to stuff much more than I say no. In 2016 I want to get rid of the pain (although a psychologist told me that’s a negative thing to wish for – more on that another time), and find ways to feel more energised, fitter and healthier. But these aren’t your average ‘lose weight, tone up’ new year’s resolutions, this is about having energy to move my body, reducing the head space my chronic pain takes up on a daily basis and feeling much more like me. The Anna who says yes (rather than the many nos I’ve said since June 3rd 2014) and grabs life by the horns again, but maybe with more of a balanced candle burning effort than before.
If you’ve had any chronic health issues, or are interested in improving your health this year, I hope my explorations will help, or at least entertain!