This is a slightly edited email conversation with a young woman who is dealing with the realities of living with M.E. and wants- understandably- recovery.
…. You are such a soldier, you inspire me! Corina I hope u don’t mind me asking but do you hope that u will recover from ME, do u think it might be possible that some day your health could be even partially restored. Or do u believe u will have it for life. What are your rational thoughts? …
… I know I can be annoying sometimes with my questions. My husband said to me only today I was like a dog with a bone going on about raising money for ME research. I have 90 blue ribbons to sell for the month of May. So I know I am obsessed with ME research and the hope of getting well again some day. ... I know you are a straight talker and thinker whereas I am a bit of a dreamer and I get carried away! ...
Dear, dear friend,
For years I kept up the hope to buy my beloved bicycle in Holland as I know I would recover. It was the dream. The goal. But as there were so many disappointments along the way, in terms of full recovery, I suppose I stayed more with what is Now rather than what Might Be.
In 2006, seven years after becoming ill, I bought a car again. Driving! Me. After years of only mobility scooter use. Funny enough a friend sent me a picture today of that time.
I was 'well'. I functioned, but still had ME.
I still had a lot of support at home, but I felt a little more part of society again. Even if I only drove a few minutes, a few times a month.
|Driving along in my automobile (2006)|
In 2012, a few days after my 50th birthday I seems to have picked up another viral infection. I was very ill. And I think menopause has played a part in my not recovering well. (that is a different story all together)
In 2012 I also understood that I might not fully recover. In a strange way it gave me relief. I could stop looking and trying and get back to living. Of course if recovery is possible some day. Great! But research is not there yet. And even if it was, we are all so different in our experience and symptoms.
(I sold my car again as it had been more a symbol what I could not do, and not a symbol of independence.)
I actually ended up doing a night class in Disability studies that year. It almost 'killed' me, but it set me up on a new road. Understanding long terms illness and disability from a much wider perspective. I wrote Into the Light as a result. As a result of not recovering and as a result of the year in college.
So, do I hope I recover? Yes. With emphasis on hope.
Do I think I recover? No.
But I will keep looking after my physical and mental wellbeing. Meditation. Easy movement. Joy. Good people around.
What is recovery anyway?
I am happy.
I have my days of misery. But they usually come from wanting things I can not have. Or comparing myself with someone else. Or some else's life.
While I was writing to you a friend who is a chiropractic practitioner stopped by with a book. The Way of Healing, by Chi Kung. There are some extremely gentle exercises in the book to restore energy. Some are even just lying down with your hands on your belly. It is wonderfully simple. Here is a video link he gave me with sitting exercises.
I will explore these kind of methods to enhance my life.
And, in terms of my bicycle. Well, who knows. It won't be today. It won't be next week. So in the meantime I am not using my precious energy to achieve that.
I don't know if that answered your question...
There are many, many thoughts on the subject...
I know you want recovery. Understandable. But please my dear friend, for your health, and the support around you, let go of that Bone! Research will happen without you looking at it. The magic will unfold some day. In the meantime. Live. Live the best life you can, with the people who love you around you.
Stop researching the research ... it will come to you.
I promise. Healing will come to you. But maybe not in the way you expect it.
Let it happen.
Give the Bone to someone else.
Your travel companion - Corina
PS, if you have a few words about your experience, I love to read them.
Corina thank you for your lovely answer. I could honestly read your words all day. Thank you.
I would write something Corina but it would take me at least a week to get it together, loss and hope would be my theme. Plenty to write on that. I had let go of constantly researching the research a while ago, there was nothing left!!!
I have signed up to Health Rising and Open Medicine, so if there are any updates they will come through to my email. I totally get living in the now, appreciating what I have. I do but at times I get lost in worry, grief and 'what will happen'. And get into a tizzy as u well know!!!
I have to hold onto hope though so I have to see that bone now and again, just not obsessively. I believe answers will come in time but as to when that will be, nobody knows, that part is hard to swallow.
Not knowing. I compare it to jail, if you knew when u were getting out or getting sent to a prison with more concessions and freedom, it would make the hard days easier.
I trust in God too that he will take care of me.
I believe too that all the ME sufferers worldwide rightfully deserve treatment, it is a disgrace that so many have been left abandoned for so long, especially the severe cases. Funding is necessary. That is why I will sell my 90 ribbons no matter what, I will do fundraisers, not just for me but for those that cant fund raise. I will do what I can, that's all I can do.
Gosh I have written loads, I should be able to do a piece for you, once I start I am off!! Thanks for giving me the opportunity.