Good evening everyone, hope you are all well.
I haven’t been around this weekend as after my exercise on friday after trying out my new padded cycling shorts, I crashed very quickly, for some people with autoimmune disease exercise can be like taking 100 steps backwards and makes moving forward very hard, but I always get there.
I’m going to explain to you the effects of what doing exercise can have on my body and how Iv been since friday and how im feeling now, I will also try to explain simply what Post Exertional Malaise (PEM) is.
Firstly within about an hour, which is pretty quick for me, I started to feel extremely ill, I was very weak and fatigued, my mood had hit rock bottom, I was very emotional, if you can imagine waking up every day with the flu, every part of your body aching, your legs and feet swollen and full of fluid, your head and throat hurt, this is how I am at the moment, it could last a few days a few weeks or even months, when I come around from it.
I climbed out of bed at about 5.40pm on saturday evening and managed to eat some junk food, I had been up during the day, but I don’t really have a memory of the times I was up and about, or the garbled chats I had been having that really didn’t make any sense to anyone, i’ve been awake for the best part of today which is really good, I just need my legs to spring a leak now lol, I’m not sure when I will get back to exercising or some form of normality but im hoping it soon.
I can get PEM by simply going out shopping, even just sat in my wheelchair and not walking, if I’m stressed or emotional, even just taking the time to write a blog post, something as simple as having a telephone conversation anything that needs me to concentrate that can take any amount of energy, big or small.
Eg. if I know im going to be out for a day, I have to plan everything in advance, from what I’m going to wear, to having my handbag ready, and rest for a minimum of 2 days before doing absolutely nothing, the days of me being spontaneous have long gone, being surprised, going out somewhere are long gone, I need time to prep before hand, that’s one thing I have become good at is prepping…
What is Post Exertional Malaise (PEM). Iv taken a few paragraphs from the internet to give you a brief overview, its a subject that can be talked about for hours, as some dont believe its real and only an excuse to not do anything physical, Iv tried to come up with a plan that will allow me to exercise to a point that will not make me crash, after doing okish for the past couple of weeks I thought I had conquered the crashing, I’m guessing that PEM had led me into a false sense of security, but I always come back from it, so hopefully soon I will rise again for a little bit….
PEM is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.
When it comes to PEM, though, little about it is normal or familiar to people without ME/CFS. It’s not just about overused muscles or needing a little extra rest.
PEM can range from moderately stronger-than-normal symptoms to completely disabling. In a mild case, the person may have extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it’s hard to even form a sentence or follow the plot of a sitcom.
As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day’s regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour.
I hope iv tried to explain it all in simple terms, and i want to thank you all for sticking by me when I go missing from here for a few weeks, please have an awesome rest of your day and your week, I’ll be back when it doesn’t take me the best part of 3 hours to write this little bit lol.