Sunday, April 17, 2011

On recovering - where to start?

Until now, I have stalled and side-stepped attempts at writing in depth about my recovery after 20 years of ME or ME/CFS. (I used to loathe the term CFS but I include it to help those googling, 'recovery ME/CFS'). As the previous post said, it still feels like 'a kind of miracle' and my mind somersaults when it tries to understand the contrast, the shocking contrast, between then and now.

And yet, I am joyously here and I often feel I owe it to others to document my journey, while simultaneously being apprehensive about potential criticism from the many who may tell me I wasn't 'that ill', or I didn't have 'real ME'. All I can say is, it is my story and this is the truth as it unfolded for me.

My 'ME' was diagnosed in 1987 - it was an illness I had never heard of. I tested positive for coxsackie virus and I was bed-bound for the first 4 years. I was ill for 20 years and during that time I took part in research studies that found various biological 'markers': an MRI showed choline 'peaks' indicative of 'brain inflammation'. One hormone assay (an insulin tolerance test?) lead me to pass out within a few minutes with nurses flapping and panicking, saying they had never seen a response like this.

Anyway.... I am not prepared to jump on the defensive and run round all the specifics. I know, and anyone who knows me, knew I was very ill for two decades and even at my best, I felt I only had 60% of 'normal' function. The other 40% of the time was spent collapsing into bed and struggling to recharge or ameliorate awful neurological-type symptoms: migraines, tinnitus, dizziness etc. Oh, and the ever-present feeling of being 'poisoned'. It was awful. The non-restorative sleep. The feeling that I might never get better. The frustration that people couldn't see just how desperately ill you always felt, and how you struggled just to 'be'.

I too, heard the odd, very rare, 'miracle' story of others who had recovered (even partially) and I would rake over the details in my head, thinking, how how how, and why not me? None of it seemed to compute.

So how did the miracle begin? In a strange round-about way, I suppose. My mum kept telling me I was 20 years ill and why didn't I do an article for a Scottish newspaper to 'raise awareness.'? Again?! I really didn't want to. I hated the whole 'sad, tired photo' thing you had to go through. Reluctantly, I agreed.

Shortly afterwards, I got an email from a Mickle Therapist offering to treat me. Was I skeptical and cynical? Only by the bucket load. But there was one thing that hooked me in. This therapist girl was my age and swore that she too had endured 20 years of severe ME and was now recovered. Her story rang so true to me in such a profound way, I had to give it a go. I had to risk my hopes being disappointed for the millionth time. I had to lay my heart open.

Now, fast forward to the present. I will go on record to say that *for me* I think this area of treatment would have helped under certain circumstances. I am not a purist or devotee of the so-called Mickel Therapy. I think it is bigger than that, this mystery of how bodies heal (or don't heal). Of how the mind and body can interact in such powerful ways that we don't fully understand.

It was the 'how how how?' that kept me going. It took me the best part of 2 years to say I was 'recovered' and before I reached this point, I felt I was 'stuck' at 70 or 80% 'improved'. But I was irked that this type of therapy had worked for others (including my therapist) and not me. I was like a Jack Russell with a rag. I just couldn't unclench my jaws thinking about it. I was angry that I wasn't 'getting' the last piece of the jigsaw.

I even left the therapy feeling 'unfinished' and stalled. I had taken up a part-time office job which was still effort-ful. I knew I would love children but I knew that didn't mean I'd automatically be able to have any (especially as I was 39 at the time). When I finally got pregnant, I was thrilled and I let myself off the hook about 'feeling exhausted' or various other symptoms. After our beautiful son was born, I expected to feel tired - new mums are all obsessed by sleep deprivation.

And so it's all been a whirr since then. Our daughter was born 15 months after our son (fast turnaround, huh?). I've had many breastfeeding sleepless nights and pockets of exhaustion, but it's so different now. I used to always bang on about ME tiredness being different and so hard to put into words. By God, I know it.

Life as a mother is tiring but it's normal and natural. It has it's own rhythm and it's not frightening or alien. That's where I am now and that's why I feel I can finally use the word 'recovered'.

There is so much more to say - I realise I haven't even attempted to explain the mechanics of how I got better. I can try that another time. And feel free to ask more.

I think it's never too late for hope or possible improvement. That has been my experience. If you get tingles of excitement just thinking about it, then your cells are up for trying to help you out. I don't know how it works, but somehow it did for me. A biology that felt almost damaged beyond repair began to renew itself. It was like a slow, 'stop-starty' spring where I could barely believe the leaves unfurling.



Anonymous said...

So glad you are well now. I had no idea you had ME for quite some time as I had originally googled "blogs on Islay" and yours came up and I got hooked on it, also led me to NMJs which interested me and I ended up buying and reading her book! Glad to see you are back blogging and will look forward to reading more. Very best wished for a complete and lifelong recovery.
Lesley x

Sue Jackson said...

Ciara -

As you know, I have been following your blog for many years, since it was mainly an ME/CFS chronicle. I have wondered how recovered you were and how exactly it happened, but I figured you'd talk about it when you felt ready.

I am so happy for you - just thrilled that your life has turned around like this and you now have two beautiful children and are living a NORMAL life. As you well know, it is the dream of all of us with ME/CFS - just to be normal.

I look forward to hearing more about the how of your recovery, but mostly I am thrilled for you!!!


Ciara said...

Aww, Sue - I am touched by your comment. How kind. I hope you are well too. I must look up your blog.

-C x

Anonymous said...

"I realise I haven't even attempted to explain the mechanics of how I got better. I can try that another time. And feel free to ask more".

You still haven't said what it was that got you better Ciara ! Why are people who claimed to have been healed by these various techniques so unable to simply say what it was that cured them. I just don't get this reluctance.
NLP/Lightning/CBT/Mickel are all like some weird religion such as scientology who are a completely secretive about the ways they behave. I just don't get it !

Amy said...

Ciara -

I'm sorry it has taken so long for me to comment on this post, especially as my earlier comment seemed to partly push you on to write it.

It's very hard to know what to say, beyond of course reiterating that I'm extremely happy for you, and that I have absolutely no doubt about how long and deeply you suffered with severe ME.

Reading this account is fascinating, but because I expect so much of your recovery is beyond easy description/explanation - perhaps beyond words - and it sounds like even a physiological mystery to you yourself (just like having ME itself feels like a deep physiological mystery - we have clues here and there from research, and we know very clearly our physical experience, but lack straightforward explanations about the catastrophe running amok in our own bodies), because of all these things my mind still goes "how, how how?". I wish your cells could unlock their secrets and tell us.

But I thank you for writing of your experience, and for giving some hope that recovery is possible. I tried the Lightning Processs, and it was a disaster for me (and actually quite an abusive, traumatic experience), so I find it hard to imagine myself trying Mickle, or Reverse Therapy or whatever. But reading your post does make me reflect, does make me realise that I both often feel physically damaged beyond repair and yet... and yet... yes, if this can happen to you I can rustle up some tingles of excitement for my own life. It certainly makes me re-examine my own attitude towards my declining health, and wonder what I can do to move things back in the right direction even if not to complete recovery. As I'm sure you know, just increased functionality is not to be underestimated in terms of quality of life. (Being able to spend time out of bed would be a good start!)

If it happened for you Ciara, then theoretically it could happen for anyone.

Thanks again for writing this, and again I wish you well and much happiness in your precious, normal life.

Amy said...

PS if you do have more to share about the "how" of your recovery I would love to know. I realise you may be put off discussing it further by anonymous comments, but I'm sure there are plenty of readers who would be receptive in a more positive way.

Ciara said...

Thank you for your moving comment, Amy. Yes, I wish I could help you and others, but not sure how. I am still in minor dilemmas about continuing the blog. Sometimes I have an urge to post, but mostly I let it pass, as the urge to keep my head down can be stronger.

I do wish you well. Don't give up and keep some hope in your big ol' heart.

-C x

adrienne said...

hi ciara, what is the name of your mickel therapist? i have severe me (bedbound) and would love to read her story or contact her. thank you so much xx

Ciara said...

Adrienne - she has given up being a therapist. But PM me or email me and I can try to communicate further with you. x