Hmm, that question isn’t as easy to answer as you may think. In general in life, when we have to measure something there may be common markers or a clear scale, but for me, and I’m guessing many on the road to recovery, it can be hard to quantify. This is especially true when it comes to ME/CFS and Fibro because there can be many factors and stages. It also depends on what we define as recovery.
In general though, I am on the whole, feeling awesome, if not a little too over-excited to be so back in life again and not at home, unable to do much!
I’m probably around 60% which can go down to like 40 or 30 on crash days or setbacks. A lot of it has always depended on securing sleep, which has been the hardest area to stabilise. Along the way there have been different aspects of my body systems healing and times, where one factor is ticked off the list completely. There is more journey to go me but it’s safe to say there has been much success and recovery already…
I was discharged from the ME/CFS department at the hospital in May this year, after having been there receiving treatment for a year. I was asked to fill out some evaluation sheets, which were of a similar nature to the forms used upon diagnosis. In review of my response, along with my OHT, Claire, we found that my physical ability had raised from 10%, (which is what would they would normally see with a person wheelchair / housebound like I was), to 60%! This we can say is a clear improvement, and based on my life now, this is true, as you can see from my entries.
I can’t remember all of the evaluations and comparisons, however, the results section which detailed my physical symptoms and their ability to effect me, was exactly the same as when I was diagnosed. This was felt about right, because I’d expressed my mixed feelings of being released from the CFS department when, there has been much improvement, but I’m not yet well! I suppose like any normal person would want, I wished to go away being in complete physical health, but I had to accept that is not yet the case. However, reassured by Claire, I understand my journey will continue to evolve.
Looking further on the positive, I didn’t think at one stage, that i’d be able to do any of the things I can now do. I can function again, most of the time, in terms of exercise, daily chores, plus lots more, check out the “gratitude blog”. Although I want to feel completely healthy doing it. I am still getting immune issues which are now most prominent to heal, now that I have really worked on assisting the nervous system. Feeling stable in our recovery is crucial. This is equally important for getting back to work. There are days where I feel less Ill and not ill at all of course but I am determined to continue finding the root areas within me, biologically and psychologically, (personality wise), that need further tending to.
If I had to describe the stages of recovery so far, I’d say, I was incredibly ill and pretty much couldn’t function at all, then I was ill and could function a bit, now I am somewhat ill and can function a lot! Next stage for me will be can function normally all of the time and no longer Ill at all, free of symptoms!!!
It’s not just about what I can do but how I feel. This has been a big lesson for me as I was such a “doer”.
One of the most amazing things that I have been gifted, despite all the functioning, not functioning, illness etc, is a more true me. I feel solid, and present, something that years ago, I wished I could feel. So it’s safe to say, that through this journey we can come to know and be ourselves in quite a profound way, and I doubt very much, I would have been gifted this had I not been to the depths of physical and mental suffering. Oh joy, sorry to sound so serious, but like Michael J. Fox said, “When life delivered me a catastrophe, I found a richness of soul.”
I continue to work on moving away from unhelpful mental patterns of forcing and pushing, and I keep getting so much back from my meditation practice and psychological work. It takes effort and commitment to change ways of being that have been around for a long time.
I’m hoping to be back to some form of self-employed work next year, as I have been lucky not to have to rush to this when I am yo-yo-ing. Check out the Power of Intention blog for more info on my achieved and future goals.
I love my body, it feels great to be in it, despite the weird things that can happen still. I can even learn to enjoy symptoms which I was once scared of. I continue to learn to listen to what I need. I know I can be taught much wisdom from my body and so can you.