Today, I was scrolling through LinkedIn and seeing lots of posts related to ME/CFS Awareness Week and people’s personal struggles. I was moved to repost several of these but then had the idea to make my own.
This was a scary idea! Not just the idea of being so open with people, but probably more so about biting off more than I can chew. I’ve not had the energy when I’ve had the time, or the time when I’ve had the energy lately to update my own site, so committing to a post for both that and to maybe post to LinkedIn is quite a commitment.
My journey with ME is similar to many I have heard, with one exception which has actually complicated things a lot over the years. I cannot trace the event that led to my ME which seems unusual.
I do remember in 2018 starting to feel very unwell. I do not recall if it was following something like Flu. This seems most likely but if so I do not remember the initial virus so it cannot have been the worse flu I’ve had! However I also began to suspect I had type 2 diabetes and after some tests and a brief visit to A&E with possible Diabetic Ketoacidosis, this was confirmed and after around 6 months brought to managable levels.
Of course with the news of diabetes I had put all the problems I was having down to that. Most things could be explained away that way. However as time went on with my diabetes under mostly good control and my HBA1C mostly down to even normal levels with medication, I began to suspect that this was not the full story.
Fast forward 2 years and I had a diagnoses of ME. Not that they actually diagnosed me from their own investigations. It was down to me to tell them what I thought it was. I don’t think it would have even occured to them otherwise! This highlights one of the biggest problems with this illness: It has next to no recognision in general practice.
Over the next 2+ years my functionality has fluctuated greatly. I found that I could do less and less when I went on our anniversary holiday with my wife. I felt guilty that I was stopping her enjoying herself as I had to stop and sit down – or leave her to go off by herself. I pushed myself so as not to disappoint her – and ultimately ended up able to do even less because of that.
I think part of the problem is there aren’t many things I can’t do: I just can’t do any of them for very long! I can walk, but any longer than 15 minutes is unusual for me to manage without serious repercussions over the next few days. I can stand – which is actually more difficult than walking sometimes! When I do too much of something I can do – I get very weak and lose mental acuity. I fell like I am wading through treacle – sometimes as if I am walking in slow motion. If I turn my head fast – then it takes a second or two for my eyes to catch up! Ultimately if I do not stop by the time I have warning signs (and that is sometimes too late), then a day or two later I will be laid low and unable to do much of anything.
In the course of less than 4 years I have gone from someone who maybe wasn’t over fit, but could walk anywhere – for miles. I could go shopping, I could go for a long drive, I could do many things. Now, I can do most things still – but at a drastically reduced rate. I can walk – but any longer tan 15-30 mins depending on the day – and thats ALL I can manage that day and often I pay for that for several days. I can no longer easily drive any distance. Any longer than 30 mins drive and I usually need to take a break to be safe. A thought I have will vanish if I do not express it in the next few seconds. It will take me several times to read something and make sense of it.
I now use an electric wheelchair if I am going to be out any longer than 15 mins – and by doing so I can take back some of what has been stolen from me on holidays and don’t feel so guilty I am ruining my wife’s holiday! I now rely on this wheelchar. I rely on my wife to be there with me. I cannot do as many things by myself and panic if I have to do things by myself.
I cannot stand to be in a noisy office or event – and bright lights can cause me pain – so I work from home full time.
I have sleep issues, stomach issues, regular headaches, memory issues to name just a few of the things that fall outside of the “Fatique” that is all most people think of when they hear ME/CFS.
Currently while no longer ensorsed by NICE, Cognitive Behaviour Therapy and Graded Exercise Therapy are still pushed to patients. Graded Exercise Therapy pushes people to do more and more – hoping to increase what they can do. The theory is that they have become deconditioned and need to push themselves to do more. Sadly, some people have been pushed from moderate ME to severe or very severe ME by this practice, turning someone who struggled to do every day tasks into someone who is bedbound and unable to take care of their basic needs. Cognitive Behaviour Therapy may help those who are struggling to accept and cope with any chronic condition – but it cannot help with the actual illness. Believing you are better – won’t mend a broken leg – or cure ALS. Why is it believed it will dramatically help with a neurological illness like ME?
ME is real – it’s not just “feeling a bit tired” that everyone complains of from time to time. It is a total reduction on capacity by a significant amount. Even those of us with mild illness are reduced to around 50% of our former capacity. This needs to be treated more seriously.
More funding needs to be spend on this illness, more research done, and more awareness by general practice and ideally people in general.
One of the most depressing aspect of ME, is that people do not understand. They do not appreciate the struggles we go through. Unless we “look ill” every time they see us – they think we’ve “got over it” or we were never very ill to start with.
ME is degrading – it steals live away from us – leaving us dependant on others. For those that have no one to depend on – it must be a terrifying nightmare. For those of us that do have others to depend on, it is still like a bad dream.
If reading this causes one person to think more about this illness and consider the many many people in the UK and worldwide who suffer every day from this debilitating illness – then telling my story here will have been all worth it.
