I live an hour train ride from London. I used to live there whilst at University during my first degree. I worked there for years, before I was self-employed and I studied there for my Masters degree. I have spent a lot of time there, it’s clear but I haven’t been there for three years since getting ill, until today Aug 24th 2015! She does a little dance…
I planned a short, easily achievable trip for my first time. I chose a good goal, to have lunch with my lovely sister, and at a place nearby the end of my line, Fenchurch Street. St. St Katherine’s docks was the venue, I knew it was a suitable walking distance and now I just waited for a good enough day to go.
It was raining, but hey, less people out to lunch so that’s a bonus! I was a bit fluey, it comes and goes, but I knew it would boost me to go, plus I could rest both ways on the train, little did I know what the universe plants in your way for some kind of weird scnychronistic test. I’ll get to it later!
I felt so elated inside to be riding the train all the way to London. I have been able to do a few train rides now, over the last six months, to nearer stops around where I live. It’s been great feeling my independence again. It’s been a bummer I don’t drive because when I went down into the dark tunnel of ME/CFS, I’ve been dependent on others to get places further afield.
If it still remains hard for the general medical profession to agree on what ME/CFS is, then how are we supposed to comprehend it when we have it ourselves. Furthermore, if we are the one experiencing the horrid, life altering experience, then how are those around us to understand our experience, or find ways to help.
This is why, in my opinion, it makes having this illness / condition / experience, or however you wish to frame it, a real tough situation to tackle, because there is just so much ambiguity, and even, in some cases, denial and judgement about the seriousness and reality of the actual bodily experience. This can and often does, lead to worsening cases of it when diagnosis is not swift, as in my case, and when information and support is not available at the outset. This lack of firm recognition can lead to further denial of the bodily experience, a tendency to, “battle on” and therefore, a deepening of the severity of ME/CFS and Fibromyalgia.
Action for M.E., a leading charity suggests: “Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Defined by the World Health Organisation as neurological, M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
Many people with M.E. experience persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is characterised by a range of additional symptoms.”
Last year I created this vision board, when I was really struggling on my recovery. I remember finishing it off in December on a day where it hurt just to hold the scissors and turn the pages of the magazine. Now, eight months on, I’ve achieved the majority of goals within this vision. My bum still isn’t quite like the beautiful peach depicted on the board but I continue to work on it. However, I did have some more pressing things to focus on over the year.
I imagine the aspects we want most desire from our hearts, are the things which come to fruition quickest or easiest. The ball really got rolling last Sept/Oct, after a major relapse in August last year. There have still been hard days and weeks. My health is still mending and there remain ups and downs, albeit less extreme, but there has been much change. Here’s a run through in relation to my vision board: Continue reading
Thank the heavens for supermarket trips and stand up showers!
I get so focused a lot of the time on getting further and rushing on to the next step of the recovery ladder, that often I forget to see how far I’ve come. It’s a common thing I’m sure…we all take for granted. I never thought I would again, and I do feel appreciative of all the small things, although I can still let it slip my mind.
To remind me of how much things can change when you think they never will, and to show you, you can regain your life again, here is my list of things I couldn’t do for a while and now I’m grateful for:
I’m so thankful for:
- Being able to wash my own hair
- Bike rides
- Kayak trips
- Spending time with old and new friends
- Getting to use public transport
I haven’t needed to use my wheelchair since November, (well apart from one trip to Homebase in December to choose a Christmas tree), but that doesn’t count because it wasn’t from the ME/CFS symptoms, it was more a case of a physical boom and bust. I had got a little over excited after a relapse and really wanted to get to a supermarket nearby, which meant I extended a graded walk up to 75% one day. Therefore I busted my knees up for a week. The cartiledge and tendons obviously still need more conditioning, you live and learn. Re-conditioning of the muscles and internal structures, when you’ve been seriously out of action for a year and a half just takes a little time but I’m getting there now.
It’s such a great feeling to progress to walking to and from places again, of course these are very short distances at the moment, of around 200 metres or 500 metres and longer paced walks with breaks. I just couldn’t stand being pushed around any longer and due to working my way back up with physio, I was ready to release it to the shed! My husband always said that I had to push him around in it for fun when I was well, so he may get a turn soon.
My journey with the wheelchair has taught me so much. I didn’t want it at all in the beginning, but of course if I got to the car, which was down steps from our apartment and up more steps to street level, then I was still unable to walk around a shop or out in nature. There were times my husband had to carry me in a fireman’s lift to the car as I couldn’t even get up the steps. I’m lucky he is a strong plumber man, used to carrying heavy boilers up flights of stairs.