The past couple of weeks have been so difficult. I have been unwell, on and off, but mostly on.
We all know feeling physically unwell reduces our threshold for any other stuff. It is draining. But then add on some anxiety; caused by not knowing what the hell is going on in your body, and let me tell you, it is exhausting.
I knew I had been overdoing it, and the payback was starting. Payback is a result of overdoing it with Chronic Fatigue Symdrome (cfs). Payback are the symptoms you experience when your body is too tired.
Because I have had other symptoms similar to some bugs going round, I presumed that was why I felt so rotten. Maybe I was experiencing payback and a bug. And then yesterday, I had an appointment with my Occupational Therapist at the CFS clinic at Broadgreen. They’re a specialist team that treat CFS across the North West.
When I explained how I’d been feeling and what I’d been experiencing, she explained it for me.
In CFS, I don’t wake up with a full bar of energy like those without it. And what little I do have in my bar of energy is used quicker than in somebody without cfs. So I have to pace myself and not do too much.
Now, “too much” used to be blitzing the whole house in one go. But as the CFS takes hold of me, “too much” is simply doing all the dishes in one go without resting. And that is a huge adjustment for me as it would be for anyone. So it takes time to learn what my body can or can’t do, and I’m not there yet.
My symptoms over the last few weeks have been getting worse. Insomnia is the first sign that things aren’t right. Ironically, lack of sleep is common in CFS. Other symptoms such as anxiety, vomiting, headaches, sensitivity to the dimmest of lights, extremely poor memory and concentration and feeling physically weak have all been plaguing me lately. Only the other night when I didn’t sleep at all, I unexpectedly vomited all over my bed at 4am in the morning. My head hurt so much that having it resting on the pillow or my hand felt like I was banging it against a rock. It was dark outside and in, but the slight bit of light showing through the curtains from the streetlight outside was piercing my eyes. I had to cover my eyes so it was pitch black. My mind felt foggy, I couldn’t think properly. I honestly felt dreadful and didn’t know why. I did put it down to exhaustion, but I didn’t understand how those symptoms happened. Until my occupational therapist explained.
When my energy bar gets empty, my body releases adrenaline to keep me going. The secondary symptoms I have just explained are symptoms from the effects of the adrenaline.
Adrenaline is released when we are in a fight or flight situation. So imagine someone jumps out at you, how that fear kicks in quickly. How it feels when the adrenaline is released – faster heart rate, breathing quicker, anxiety etc. This is how I feel but on a longer term basis, like probably 90% of the time. If someone jumped out at you, once you realise you are ok, your body stops producing adrenaline. Mine just keeps giving and giving to keep my body energised. And as a result of that, I am feeling sick, vomiting, not sleeping, feeling anxious, restless, unable to sleep, unable to think clearly. All of what I am experiencing has been symptoms of CFS. Which means I am actually not going mad or losing my mind (it is so scary to think you are losing your mind and knowledge).
So I can improve, but it takes time and change. I still can’t tell when I am overdoing it. And because of that, I cant stop myself before it’s too late. I have to learn what is too much and how much rest I need in between. And it doesn’t happen quickly; it’s a long term project. But the main thing is, I know why I feel so shit, and that helps.
I hope it helps others to understand CFS a bit better💖💖