I’ve been struggling for a week to write a post, this post, which I had originally intended to share on Christmas Eve; and partly because of determination (or stubborness), I’ve kept at it. I don’t have writer’s block – I’m writing a lot, just going off at tangents and I end up producing work which does not fit with my original ideas for the message I want to get across. My message is one of defiance in the face of an ongoing chronic illness and declaring war on this illness.
In the run up to Christmas my Chronic Fatigue Sydrome (CFS) was escalating and by Christmas Eve I had a bad flare up – feeling exhausted and fatigued, aching all over, sore throat; my hands and the pads of my feet were so sore I couldn’t do much and couldn’t stand or walk. Rather than simply accepting the stiuation and surrendering to allow my body the time to recover, I was feeling defiant and decided to fight back – yes, I need to let my body recover, but at the same time I wasn’t prepared to just back down and put life on hold for a few days – especially not at Christmas time.
Over the past two years I’ve learned how to manage the condition on a day to day basis so that its provided me with an improved quality of life, but flare ups can and do still occur. They’re unpredictable and can take a couple of days after an event or activity for the symptoms to show. They’re also unpredicatable in that there is no guarantee that the same event, a dental appointment for example, will cause a crash or flare up each time. I should say I was first diagnosed with CFS in 1994.
Anyway, these flare ups can be a struggle to live with and work through but I’ve decided that I want to be proactive and while allowing my body to rest, to fight back at the same time. At least that was my idea, and I have had some successes, but CFS creates a battledground inside the body and given this recent flare up is still raging, I wonder if I’ve prolonged the flare up and the battle by fighting.
CFS is generally considered an auto-immune disease which tricks my immune system to go into overdrive, fighting imaginary invaders. Many CFS cases emerge after some form of viral infection – my own case was after I had Glandular Fever. The discriptions of symptoms for Long Covid, seem like another version of CFS. My hope, given the increased attention Long Covid is receiving, is that there maybe a breakthrough discovery which also helps CFS sufferers. I’m waiting and watching, but not holding my breath. I will continue to do what I can myself to improve my condition where possible.
The germ warfare being waged inside my body would explain why, during a flare up, I feel like I have the flu. If I had the flu, I would rest and recover, so I question whether I’m right to push through and fight back with CFS flare ups when the symptoms are the same, or would it benefit me more to stop and rest up?
I guess I can fight back by resting a little, but not stopping completely, but also by drinking lots of water and eating healthily. Some personal experimentation with different food groups have led me to discover that for myself, the best way to boost my energy levels is through a high protein diet, but still eating lots of fresh fruits and vegetables.
For me, one of the most difficult symptoms to deal with has been the insomnia. Climbing into bed looking to escape into the land of slumber, my head hits my fluffy pillows. I’m cosy and settle down for a good sleep. Then, just like that, suddenly, I’m wide awake and my brain refuses to switch off, or if I do get some sleep, I’m wide awake again 20 minutes later. It seems ironic that as my pain and other symptoms and the fatigue lift, CFS carries a sting in the tail with insomnia. I am at a loss with how to deal with the insomnia. I’ve tried many of the recommended sleep hygiene measures; I’ve consulted sleep specialists, but to no avail. I’ve just learned not to stress about being unable to sleep. If I can’t sleep, I’ll get back up and potter – or write, depending on my mood and energy levels. With this current flare up, I’ve had 3 days of insomnia in the past week or so.
I guess I need to think carefully about the battles I engage in with CFS. In the grand scheme of things; I am winning the war – my quality of life is so much better than it was two years ago. I need to keep reminding myself of my successes and progress when the flare ups or crashes hit. Ironically, Covid allowed me to regain control of my life. I guess I have to accept I will lose some battles. However, I can learn more about coping and living with the flare ups, and continue to develop strategies to minimise the impact and that’s how I’ll win more battles.
Chronic illnesses and chronic pain are challenging to live with. It is my hope that this post will help someone feel less alone. Please feel free to use the comments to share opinions or ideas about the content of my post. To receive notifications of future posts, please hit the subscribe button below.