Friday, June 03, 2011

In reply to Anonymous...

There are lots of Anonymous's out there, and one of them wrote -

You still haven't said what it was that got you better, Ciara! Why are people who claim 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 completely secretive about the ways they behave. I just don't get it!

Okey dokey, Anon. I was like you, I just didn't get it....and the irony is, I'm not sure I really get it, even now. Yes, it seems freakishly unbelievable and improbable that anyone with serious illness could benefit from signing up to a bunch of nebulous concepts and behaviour changes. I know.

It was Mickel therapy I tried, but I guess it could have been any of the above. At first I railed against the recommendation that you don't discuss treatment while undergoing it. How ridiculous and self-limiting, I thought. How unhelpful to other sufferers. And yet, after a while I realise that repeatedly analysing the ongoing process got in the way of the 'flow' of trying to recover. It would be like trying to practise snooker/ yoga / tennis, and stopping to calculate the angle of every move, while debating the pros and cons of your game with others in the room/audience. Better to wait till the game is finished and discuss it then...

And yet - here's another twist - if it works and you do get better, miracle of miracles (!) some of us still don't fully understand how it happened. I was almost embarrassed. How could a behavioural therapy reverse a profoundly physical illness? Joe Public will reassure themselves that, yes, (it's as they thought!) you can't have been that ill in the first place. You just milked it for a couple of decades.

Of course some Recover-ees may feel cautious about what they choose to say. We face scepticism from all sides and we're not quite sure how to explain it to ourselves.

However, I am now more intrigued by the role of the psyche in all illnesses. What's the new field of research called? Psycho-neuro-immunology? There might be some answers in there.

I'm not even sure that I buy into the entire overview of these therapies - there are subtle variations down each path of MT/RT/ LP/ NLP etc. The single most important factor for me was having a therapist (is that even the right word?) who had overcome serious ME/CFS herself. (I think Recover-ees training as therapists is reasonably common in these treatments). Her experience kept me believing, or suspending disbelief, against the odds.

I think there are books and websites explaining the various 'plans for recovery', but in my experience, it would be quite hard to try it on your own. I think most people would benefit from a 'therapist' to guide them and keep them on track. I know it's expensive, and many people find that off-putting. I don't know any way round that, other than taking a gamble. It's up to every individual. I'll say again: I'm not trying to sell any thing or any one crede, I'm only speaking of my experience. I don't know if this helps or perplexes.

As they say at the end of Tele-tubbies, 'Time for Tubby Bye Byes'. Time for bed. My kids could be up at 6am. Still feels far too early. Drastic and draconian, even.


Saturday, April 30, 2011

Ground Elder - grinding you down.

I am trying to become a gardener for the time in my life. I have good ideas; I have enthusiasm. I have an Alan Titchmarsh calender that cost me a pound in the January sales. I also have a weed called ground elder that is causing me awe and despondency.

The ground elder just keeps growing and colonising - flower beds, the lawn, the compost heap. Its strangulating tendrils would be good in a Dr Who episode. Apparently weed killer and repeated digging will control but not eradicate it. Punters on garden message boards ask, 'how do I get rid of ground elder?' And those in the know reply, 'move house or get a nuclear bomb'. Here's a similar account of declaring war on ground elder.

Most evenings, I go out to the garden after the marathon childcare/tidy-athon that is your average parenting day...and then I try to find the stamina to dig out a bit more of the Ground Elder. I think I am veering towards obsession as I like to swear at it, and then spend too much time looking up Internet articles on how to kill it. Apparently you can eat it but it tastes worse than spinach.

Ah well, the apple blossom is out and the kids are loving the paddling pool. In this recent generous sunshine, it's not far from idyllic.


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.


A kind of miracle

Okay, the following blog comment is spurring me back to action. It reads as follows -

I haven't commented here for a long time, but I too have been so happy for you and so astonished that you have made such a recovery and have two children now, and the part you wrote about feeding your soul 'with a life I thought I'd never have' brought me to tears. It does give me hope - I am bed bound, age 35, after 20 years of illness, have developed various complications, and often hope feels in short supply. Sometimes I find myself thinking, 'was Ciara still severely ill at my age? Is there still time for a miraculous recovery?"!

All I can say is that your story IS a kind of miracle to me and I am very, very happy for you. Enjoy it. I know you know how incredibly precious this level of normality is.

And, in reply, I will open a new post.


Thursday, March 03, 2011

A happy place to sit.

Well, as you can see, I rarely post any more and if there are any readers left, they may be wondering what has happened to me. I am telling myself that this not-writing is a good thing for now. It is just a sign that my life is so full, that I am well, and that looking after our two beloved children is my calling.

When I just had Hugh, I could post when he napped, but now, with Tess (almost 1) it's pretty much a 12-14 hour day and in those last two hours of the day, when the kids are in peaceful sleep, I just want....well, I just want to relax. I surf the net, watch TV, read, chat, or whatever. Usually I want input and not more output.

So I'm going to lurk until the next chapter comes along. I feel amazingly lucky to have made such a shocking recovery after twenty years of severe illness. Twenty years. It never ceases to amaze me. One day I hope to write more on that. For now I am just enjoying the everyday and feeding my soul with a life that I thought I'd never have. I'd love if there were others who could surprise themselves too. It's never too late for hope.


Thursday, January 13, 2011

Dressy but not

I was buying a patterned top in a charity shop today and the woman behind the counter said, yes, I can see you getting a lot of wear out of that; it's dressy but not.

Sunday, January 09, 2011

New Laptop, New Start.

I have a new laptop. I also have new laptop guilt, because I had no idea how easy it was to let a toddler break the old one. I wonder how many laptops are broken by beloved chubby hands poking and footering and, whoops! A £400 mistake. That easy. Not like mobile phones that survive endless bounces off the floor.

So, I am frantic about trying to keep the wains off this one. It sits high on a bookshelf and they stand in front of it wailing, praying, willing, 'Puter down. Puter dowwwwnnnn!' It's hard to explain why they can't have it.

I keep telling myself I should blog more. I need to get into the rhythm of it again. To get less self-conscious. To just write. At the moment I'm enjoying reading a book version of Stuart's blog. It's called 'The 'Celestial Cafe' and it just flows like a good conversation or a spring morning and makes you want to read more.

I don't think I'm even aiming for profundity. I just want to get into the habit of writing. You gotta have that for starters.


Wednesday, January 05, 2011

Digital Detoxes and Blog holidays

Forgive me, dear reader, for my infrequent posting. Yes, I am still torn, often wondering how much time online is too much? I've been enjoying 'The Winter of Our Disconnect' as Radio 4's book of the week.
Basically, a technology-addicted family gave up all screen time for 6 months and found themselves reconnecting in simple and rewarding ways. Here's a summary from a G2 article. Tempting, huh? Nice Man announced, 'We are not doin' that, by the way.' Hmm? Maybe at a later date, I could work up to it. In the meantime, I must get to bed!