A Fork In Time is pleased to present our second Guest Blog! Jacqui Sayers writes a brave personal account of recovering from Chronic Fatigue Syndrome/ ME and the emotional impact of long term illness.
We hope Jacqui’s story will bring comfort and a sense of comradery and inspiration to others suffering with long term illness.
Back From Black: A Personal Account of Recovering From Chronic Fatigue Syndrome
by Jacqui Sayers
I’ve been asked to share my experiences of CFS/ME – call it what you will.
I am currently, and have been for some time, in the extraordinarily privileged position of not having to explain this illness to people.
For many years, particularly when I was getting better but wasn’t well enough to do much at all, I felt obliged to mention it to new folk I met. This was an attempt to highlight that, although I may have looked generally okay, albeit pale and thin, I wasn’t opting out of social and physical activities through a lack of interest or hermit-tendencies (that came later!); there was something invisible preventing me from being involved in things I was actually desperate to do.
I’ve been rid of it for a long time now, so firstly, it does go away, and you will one day feel 100 per cent again. I very rarely talk about this now – partly because it’s a pretty dark period of my life which in some ways I’d rather forget about, but mainly because I don’t have to.
But I want to share this, so I guess I’ll start from the beginning:
I was a very fit, healthy and athletic child, up until the age of around eight when I developed quite a severe case of glandular fever. It didn’t quite go away when it should have. I think chickenpox happened around the same time, and then I had a succession of bouts of tonsillitis. After having my tonsils out (I think while I was still feeling the effects of glandular fever), I became very unwell indeed. I think I was bed-ridden for a year, or eighteen months – I don’t remember a great deal from this period, because frankly nothing much happened, and it was a fucking miserable time.
No one disputed I was very unwell, but dozens of visits to paediatricians, and tests for every illness under the sun, drew a blank. So, by ruling out everything else, my parents and I were told I had ‘ME’. I needed to rest. I would be fine within six to twelve months, probably.
That’s not quite what happened. I was ill for several years. I’m actually grateful the doctors were not able to give me an accurate idea of how long I would be ill for at that point, as I would not have been able to deal with it.
I won’t bore you with all the details, but I missed most of school, was prevented from doing all of the physical activities I loved, and from experiencing the outdoors and nature (my real passions), and excluded from the enjoyment of spending time with my friends. My life was joyless because my body didn’t work, and I felt too unwell to even be able to read for more than five minutes.
I expect the sense of profound frustration, helplessness and desperation that I felt is something very familiar to most people who have endured any long term illness. I became quite severely depressed. I’m not sure how much to share, but suffice to say that by the age of eleven I found myself viewing the kitchen knives as a potential solution, and began an eight year period of antidepressant medication (the depression being the only facet of my illness the doctors had any hope of treating).
Looking back, I can sort of separate the earlier periods of ‘active’ illness, from the very long and slow process of recovery. To cut a long and probably fairly tedious story short, I would say I was beginning to recover by my early teens. By the time I was 14 or 15 I was well enough to attend school part time (which came with its own challenges as my desperation to go back full-time and be ‘normal’ caused me to exhaust myself and relapse). I had a couple of hours of home tutoring each week during the last year of school – enough for me to blag sufficient GCSEs to get into college. By the time I was at college, I was able to do most ‘normal’ things without worry, though I was still very sickly and prone to infections, and to making a meal of recovering from them.
I’d say by the time I was 18, I no longer had ME/CFS/whatever it had been, but was still left with the hangover of a weak immune system. But I could do physical activity without paying for it, and was able to lead a normal life without having to make excuses for not doing things I was actually desperate to take part in. I could enjoy life a bit.
The depression, predictably, improved with my physical health and as I was able to lead a more normal life I felt more at peace with myself mentally, and with the formerly broken body that had caused all of this. There was a long period of time when I was ill where I was so desperate with frustration at my predicament, and the feeling that I would be ill forever, that I just wanted it to end.
But here’s the thing I really want to share:
I GOT BETTER.
Unfortunately, there was no magic bullet – it was time and rest that did it in the end. Tiny gradual improvements all add up over time. I suspect there are a multitude of different poorly-understood conditions currently put under the umbrella of ‘CFS/ME’. The only advice I would give to anyone suffering from one of them is to take it easy, don’t push yourself too much, and KEEP YOUR CHIN UP!! Easier said than done, I know, but you can sometimes find tiny moments of joy even when you’re very ill. Surround yourself with people that make you smile. Get some fresh air when you feel up to it. Go outside and feel the sun on your skin. Try to laugh. Eat well. Don’t give yourself a hard time for resting – your body needs it. You will get better, like I did.
So what happens after ME/CFS/Whatever it was…?
Since my early twenties I’d say I’ve been physically ‘normal-ish’. I’ve a variety of minor and not very life-altering medical anomalies which may or may not be related to what my body went through when I was younger. My immune system is still a bit below par, and occasionally when a viral infection doesn’t shift in the expected timeframe, I get a chilling sense of déjà vous. But I always get better. Like the ME, my ongoing minor medical maladies tend to share the theme of being a bit mysterious… some sort of possibly auto-immune inflammatory bowel condition… a mysterious twelve month bout of bronchitis… Severe B12 deficiency (now treated), for no apparent reason… a heart arrhythmia with no cause… but none of that has a profound affect on me physically. I can do all the normal stuff, and I feel absolutely fine most of the time.
I went to uni (twice), I did a ski season, I can jog (terribly), I can cycle, I can do what I want and the only limitation, frankly, is my shameful lack of fitness – causing a whole different and entirely welcome type of fatigue in my muscles. If you’d told eleven-year-old me that I’d be able to run three miles, or snowboard, or dabble in the intriguing world of rollerderby, I probably wouldn’t have believed you, but it might have given me a bit more hope than I had at the time. That, I suppose, is why I’m sharing all of this.
I still struggle with periods of depression from time to time, but they’ve never reached the depths they did when I was unwell, I think because I am no longer trapped in what I viewed as an intolerable situation. I can change things if I choose to.
I don’t have any bitterness or regret about what I went through because I have no doubt that it shaped who I am. I feel I can deal with most of what life is likely to throw at me, having got through that. And it’s thrown some shit at me since then, trust me, but I’m doing alright!
I am profoundly grateful for my health, when I remember to be – as I was over Christmas: I had a little epiphany while suffering from a flu-like virus, which caused me to have a high fever, aches and pains, splitting headache and extreme fatigue – after ONE DAY of that I basically wanted to cry and to have my mum mop my brow. What a privileged wuss I have become, I thought. I had to put up with that for years once, and now I can’t handle it for twenty four hours – BECAUSE I DON’T HAVE TO! What a joy.
Hang in there, guys, you will get there too. xx
Jacqui is happy to answer any questions you might have for her about her journey out of Chronic Fatigue – post in the comments section below!