Two weeks ago today I went into our local town centre.
It had been years since I had been into town and I wanted to see the changes, I also wanted to get a new library card as I hadn’t used the library for over 10 years, in fact I hadn’t even seen the new library (opened in 2013 ), we also had lunch and it was so good to get out.
I thought to myself “Why don’t I do this more?”
The next day I felt okay but I know that it isn’t the next day where my body pushes back, but the day after.
And WOW, did it hit back!
I am still in flare up, I had a physio appointment the next Wednesday which I couldn’t miss it even though I felt so unwell and the pain levels were soaring.
I had previously rebooked the previous two appointments and was told that next time I would be discharged!
The first was because my wife couldn’t take me, the next because of a flare up and it seems mad that they don’t understand that some people just can’t make an appointment sometimes because of pain, poor health etc. After all, it is a hospital!
I prepared myself for the flare up to last a few days and the physio appointment would likely extend it a couple of days.
But 2 weeks later?
I am now going stir crazy, my mind is convincing me that it is always like this and I expect I might be a tad grumpy!
I managed to get out two reviews last weekend but that was like trying to swim through cement, it was slow and my fatigued brain fought me every inch of the way, but at least they were done.
I know the reviews can wait but it unsettles me if I get behind and so I try to film, edit and write with the help of my wife if I can.
So what is this flare up like?
First off it is fatigue, both physical and mental fatigue that can leave me feeling so drained at the end of the day that even looking at a screen makes me feel sick and I become hypersensitive to noise, taste and bright lights.
So I am more susceptible to pain. I don’t think it is that my pain levels rise but more that I am unable to handle the pain that constantly is there and so I feel like I am in even more pain and it is bloody nasty.
A previously well me would have been heading to A&E with pain this bad. However after so many years of pain, you learn to just push through and this is done by me breaking up the day and just getting through a small period of time rather than focusing on ‘this is forever!”
I get chest pain!
We know that when I have a flare up, I can get an inverted T Wave and this has shown many times on an ECG.
It is nothing to worry about, I have had all the tests many times but it is still pain like I am having a heart attack and, well let’s just say that it is unpleasant!
Because I am suffering from fatigue, my vision isn’t so good even with my glasses on. This is because the muscles that control our eyes also get affected.
The mental fatigue can cause me to lose words. Even the simplest of words can evade me when I am speaking and my family tell me that I often use the wrong words or just stop talking mid sentence and not realise!
So two weeks in and I am wondering how much longer, but all I can do is rest up and wait it out!
Thank you to my wife for helping with this post!