Yesterday morning I had a CT scan at 08.50 (it’s now two days ago, I ran out of spoons and couldn’t carry on blogging) and its the first time I have ventured out this year, I was surprised at how quick the scan was and I had taken some Oramorph and was feeling as okay as I get.
On the way home my wife said she needed to get some quorn for my daughter and because it was on our route, we popped into Waitrose. Its our nearest supermarket and even though people associate it with being pricey, their prices are quite good.
I made the most of the freedom and looked at everything from televisions (which I can’t afford) to baking goods and lapped up the opportunity to be free of the four walls of our bungalow.
Needless to say, today I am short of spoons and I’m back to my usual spot on the settee under a blanket. I don’t know why I’m always so surprised at how such a small excursion can leave me feeling fatigued and feeling like I have just run up a mountain, its not like this spoonie life is new to me.
Today I should have showered but it’s been postponed because that extra exertion would most likely leave me foggy and struggling with sensory overload and extra pain, luckily I’m not too stinky, well I don’t think so *sniffs armpit*.
The frustrating thing is that I am almost at the end of a very good book and I have another book lined up, but the simple task of reading when I’m feeling like this adds to the fatigue and then I even struggle to watch TV. I think that when a spoonie tells someone they suffer with fatigue, the full impact of what we mean isn’t understood because people associate fatigue with just feeling tired and any spoonie will know that the fatigue that we experience is a long way from simply being tired.
My wife can tell when I’m struggling, she says “you have panda eyes, you need to rest” and yet I actually spend most of my time resting.
This is my experience of fatigue and I will work from head to toe.
Brainfog – this leaves me unable to think properly, I struggle to learn anything new, my memory is very bad now, especially short time. Thinking when foggy is like trying to walk through treacle.
Visual fatigue – my vision blurs and I struggle to read or watch TV and I can’t tolerate bright light
Hearing – I become sensitive to noise and have to wear ear plugs, I can’t handle multiple conversations in the room when we have visitors and I can’t have the TV on and have a conversation.
Speech – I lose words or can’t find the right word and I get my words muddled, I think I have said something correctly but I have often Nottage any sense.
Muscles – My muscles feel weak and sore like I have worked out at the gym for hours on end or like when you get the flu.
Joints – My joints ache and I struggle with proper range of movement
Heart – When I’m having a flare up I get negative/inverted T waves, I’m not sure what this means but it has been the cause of me ending up in cardiac care a few times and I have had two angiograms, let’s just say that when a doc sees this on an ECG, panic sets in and they don’t listen to me trying to explain its okay, but I guess they have to be 100% sure. I get chest pains with it but it doesn’t do me any harm. The problem is that I just brush off chest pains as being how my body reacts to fatigue, but there is always the risk that one day it could be the real thing.
Bladder – I get urinary retention, now to those of you that pee too often, it may sound ideal but I can go to bed at 9pm and not need to pee until midday the next day.
Legs – I get restless leg syndrome, I literally can’t stop moving my legs when I’m laid in bed. Its a weird achey feeling but for me it’s even worse because of the knee and hip problems I have. I use a wheelchair because it’s too painful to even take a few steps and image muscle wastage which means I can’t even properly stand up, except for transferring from wheelchair to toilet or car etc
Then of course there is the whole body fatigue, you can’t fight it because you will exacerbate the symptoms further and so you have to just give in and rest and there is nothing you can do, except for rest and wait for it to ease.
Over the years I have tried so many ways to beat CFS, I was lucky enough to return to work for a few years but now it’s back and I think it’s because of my knee problems and the extra energy I use and pain is also tiring. I have tried to exercise, starting gradually and it doesn’t work no matter what the experts say! I’m useless at pacing, when I’m feeling good I just want to make up for all the time lost and I then cause a flare up.
I so wanted to finish this blog, but my shoulders are playing up and I’m having a rough time this week, just writing this finishing piece is so painful and so that all for now