Ive already made a similar post to this one so apologies for any repetition. These are just some thoughts that I’m trying to make sense of. Visiting the CFS/ME clinic always leaves me confused and overwhelmed. There is so much to get my head around and a lot of it is contradictory. Some of you may not want to even bother reading this one. I’m not sure it’s a very good one.
This is confusing. Life with M.E is! Welcome to our world! Good luck making sense of some of this. If you do manage it, perhaps you can explain it better to me because I’m lost!
It’s like we live in a maze and nobody has a map that will get us to the centre the easiest or quickest way. We have to shuffle and stumble along on our own, banging into dead ends more often than not.
It can all be too much. Sometimes I feel like I’m drowning and I have to fight just to keep my head above water. There is so much information to take in and process. I am to listen to my body and rest, but I am to retrain my brain into being a normal brain and to overrest is bad. I am to push my body to build up my strength but I am not supposed to overdo things and trigger a relapse. Sometimes I just need someone to give me the answers and to hold my hand and lead the way. Sadly, with this illness, it doesn’t work like that. There are no answers or clear guidelines to follow. We are given the info and it is left to us to find our own answers. It is so hard. I hate it. It is so incredibly confusing. Rest but don’t overrest. Build up your strength but don’t overdo it. Use your muscles so that they don’t waste away but don’t use them because to do any kind of exercise seems to trigger an allergic reaction in an M.E sufferer. Everything is contradictory and jumbled and nobody knows the way forward. There is no manual of how to survive this condition. There is no set treatment programme and no consensus on what works and what doesn’t. It’s a minefield. No wonder I often feel lost and unsure of which way to go next…inner turmoil. I just don’t get it. I don’t understand. And if I don’t understand then how can I possibly expect non-sufferers to get their heads around it?
Have I really improved? Or do I just cope better and manage my new life and symptoms better than I did in the beginning? Have I just got used to it or have I really made progress? I still have the same debilitating symptoms and still feel as poorly as I did in the beginning, but I somehow seem to be able to do more. The brain fog has been improved by medication, as has the restlessness but other than that I just have to ride it all out.
I say that I am retraining my brain to behave like a normal brain but at the same time I say that M.E cannot be cured by repeating something over and over. That’s contradictory. To retrain my brain I am doing just that; repeating something so that my brain eventually recognises it as the norm.
With M.E you have to look a little deeper. Nothing with this condition is straight forward, and that includes the recovery. For us, it is simply not a case of pushing and forcing ones body to do things so that, over time, it will become accustomed to it and be okay. Our bodies are screaming at us to slow down and stop and to ignore them completely is ultimately…well, it’s not wise! It is not like normal rehab or physio where repetition can lead to results. Instead we coax our bodies back to the norm, very, gently. Our results, if there are any, come unimaginably slower than one would expect.
My clinic has told me to retrain my brain. To do this I have had to stick to a routine and persevere, repeating tasks so that they become second nature and the norm again. Persevering with tasks has made them easier for me. Take having a shower. It is now much easier than it was. But why? Is it because I have spent the last 24 months sticking with this goal so that my brain and body are now used to doing such a task? Or is it because my M.E has improved naturally? Is it because I have simply accustomed myself to my body screaming at me that it’s exhausted yet I can carry on with such a task regardless? Do the principles of ‘practise makes perfect’ apply to us after all? Is the only difference that our goals are distinctively ‘easier’ and ‘simpler’ to achieve than those of a healthy human being? Walking 100 metres everyday is too much but starting with the ‘basics’ like getting changed and showering everyday for months on end became easier for me, so much so that I could increase my targets a tiny bit.
It is confusing I know. I find it all incredibly difficult to get my head around.
Basically, we are incredibly poorly. Incredibly so. You can’t treat our condition in the same way you would treat a sprained ankle and you can’t subject us to the same recovery programme you might give to someone with a more conventional illness or disease.
M.E really is quite extraordinary and unique.