A Poem about growth, and real life for all those who have had an experience with debilitating health, (CFS / ME, POTS, and Fibromyalgia). I wrote this to help inspire people who need it, and lighten up the subject, but be honest about how challenging it can be. Life is all around us, even when we may be being pushed beyond our limits. It’s at these trying times, that life becomes even more special. When everything slows down, and you are so in the moment, even in the midst of something terrible, there is peace, and connection.
If it resonates then please feel free to share it.
Slowing down for me, is a continual process. I have a super speed mind and I’ve had to train myself, that just because I think quick doesn’t mean I should act so speedily. In fact, thinking less has been most rewarding. Feeling more and simply being has been at the heart of not only my health recovery, but in the foundations of my revised life.
It takes a great deal of discipline to pace, for some it may be easier than others. The inner critic has a lot to do with why we push beyond our boundaries rather than work within our limits, but that’s another blog.
A diagnosis is not the end of things. It can be the start of your commitment to getting well, but the variety of difficulties and differences, the people placed within the ME/CFS label suffer is wide. This can be true of any health crisis and chronic illness. In a way the diagnosis is the start of the journey and the end to whatever that wasn’t working about you and your life, that went before.
However there seems to be a different version of something similar in each case, although there are certainly common markers to the symptoms and personality types that are diagnosed. Some cases are more simple and others more complex. Mine has been the latter situation. However, not wanting to underestimate or make light of the situation, even with the simple cases of ME/CFS, it can still take a vast amount of time, likely years to recover.
Finding out what is really going on for you, biologically and emotionally is very important. The main areas to rule out first, and at little cost to you, are vitamin and mineral deficiencies, which a large amount of people with ME/CFS seem to have, in addition to the staple immune and nervous system irregularities. In my case I have also found imbalances within my endocrine system. My hormones are imbalanced, and so I am addressing this with a specialist soon, after being quite disgusted at how limiting the service is within the Endocrinology department on the NHS. Continue reading
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…
There have been a lot of tools and practices that have helped me to feel somewhat better. Some activities / aids, increase my energy or accelerate my body’s healing ability and others have been less helpful or had little effect.
I’ve added stars against things that helped, and most of these I continue to use regularly as part of my tailored recovery treatment plan. The rating is as follows
- 0 Stars = no change
- 1 Star = slightly helpful / improving energy or decrease in symptoms
- 2 Stars = significant improvement
- 3 Stars = most helpful, use frequently
- Sad face = made things worse
Here is a list of my tried treatments and activities:
- Accupressure massage🌟
- Indoor Pilates🌟🌟
- Occupational health therapist🌟
- Graded Exercise Therapy🌟
- Private blood/saliva testing 🌟🌟
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.
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 added a collection of pictures, I would never normally want to be seen, because I think it’s good to honor all aspects of the journey, no matter how unappealing.
I don’t really remember the first year when I was traversing into ME/CFS but when I look at the image of me with the painting I created, it still makes me shudder and I can feel quite physically sick. This was a time I wouldn’t want to spend much time dwelling on. A dark night of the soul, when recalled can often make you want to run, even from the memory. This anxiety is only normal and in fact not every memory or experience can be turned into a bright spark of positivity. That very feeling will be the thing that allows you to be the you that you are now.
Everything went on hold back then for me in 2013 until pretty much my diagnosis in 2014. There was some life happening in the shadows but it was melded so tightly with material from my unconscious that it was like a dream world, or a nightmare. This said, I’m even surprised I found any pictures, because this was the last thing from my mind. In most situations and photos generally, I tried to put on a face, but any person who has had a real health crisis, physical / mental, or both, will know that behind closed doors, the act drops and its just time with our difficulty.
Today I’ve reached a new place on my extended walks!
Graded Exercise Therapy has been part of the assistance I’ve been getting from the Essex Chronic Fatigue Syndrome Service at Southend Hospital. By body wasn’t at all ready for exercise in the beginning and so this programme initially made things worse, especially because I’m quite a disciplined and overly achieving type of person. This in combination with being given some instruction means I can easily follow a rule like gospel and over-ride my body or my own feelings, (see the Graded Exercise Therapy post for more detailed info).
However, I like to believe you can take some good out of everything, so despite GET having it’s own public health warnings and short comings, it’s been useful for me to use in my “own”way, not as outlined in the NHS subscribed booklet way!