Sunday, 29 January 2012

Helen's story

I’m glad Kathleen has asked me to write this as I’d been meaning to do it for ages. It’s good to have a deadline so now I’ll take time out from my busy life to do it. I’m conscious that some of you reading this may be very, very ill and really hardly able to read. For your sake I’m going to give you a very potted version of my experience. I’ll go on to write a fuller, longer version that hopefully if you decide to go for RT, then recover you can read, well that is if you want to take time out from your busy life to do so! Here goes…..

Glandular fever aged 12, off school for a year, tired but functional with dodgy glands for 9 year – big relapse aged 21, spent most of my twenties housebound and exhausted, cured at 32 by RT (Hooray).

It all started with glandular fever when I was 12, though looking back I can see that I was tiring age 11 and I had various stomach problems at this time too. I was off school for a year then managed to return. I was probably about 80% well during my teens and enjoyed a healthy(?!) social life. I left Shetland to go to university to study physics (more on this later!) aged 18 and again had a ‘healthy’ social life with some studying thrown in. I relapsed at 21, managing a new record low of 6% attendance in my honours year.

Somehow I got through and having no energy at all had to return to Shetland to try and recover (from ME and physics!). During this time I spent periods bedridden, housebound and periods when I could work up to 18 hours a week. I did manage to work full time but only for 5 months. During this time I literally crawled from the car into the house and onto the couch when I came home, then lay there til I could muster enough energy to go to bed then get up the next day and do it all again. It’ll come as no surprise that this was the forerunner to another huge relapse.

My downfall was that I worked whatever hours I could, 3, 6, 9, 18, 37 but had no energy left for socializing. I’ve lost count of the number of henny nights, birthdays and weddings that I missed. I’ve also lost count of the number of times folk met me and assumed I no longer lived in Shetland as they hadn’t seen or heard of me for so long.

A word on ‘Cures’ - I tried various things over the years to get well – fancy diets – no wheat, dairy, sugar etc which made me maybe 3% better; vitamins, EP oil which made me about £% poorer; rest, no rest, mind over matter, sleeping on a supposedly magnetic spotted hanky, not sleeping on a supposedly magnetic hanky and even cold baths. But to no avail. I’d heard that pregnancy could help in some folk and when I was pregnant with my first child I did feel an improvement at around 16 weeks. Not enough to go on a long walk you understand but maybe enough to stay waken for an extra hour a day.

When I had my first (and second) bairn I relied an awful lot on my partner and Mam to help look after them. Most days (well OK, every day) I was in bed til 1pm. I would then rise but by 5 or 6 would need another hours sleep to get me through til the time when both me and the baby would crash out. I could manage to go to the local toddler group once a week and keep up an appearance of normality but was ‘exhausted’ all the time.

A word on symptoms – I’m using the word ‘exhausted’ but as you’ll know if you’ve got ME/PVFS this is inadequate to describe the feeling of the relentless weakness, utter physical incapability and drainedness that is the delights of the ME exhaustion. I can remember during a really bad relapse lying in bed (again) and feeling that I was just a head – all my body was disconnected – I had no power to move my body and was numb from the neck down. It took monumental effort just to move a finger. Also exhaustion is the symptom everyone speaks about cos it’s the worst and the most life altering. Tinnitus, irritable bowel, aching muscles (spaigy, in Shetlandic), insomnia, frozen legs and feet, irritable bladder, brainfog, brainfog (joke) are all horrid but a mere inconvenience as compared to the ‘exhaustion’ that is ME.

Also the extent of the exhaustion for me varied but not hugely from day to day, more year to year. Some years I could work 18 hours a week, others I couldn’t work or leave the house at all.

A word on mood – Of course in common with most folk who have ME I was offered anti-depressants on a number of occasions and apart from one lovely guy who was at college at the same time as me – came to hate all doctors. Well not hate so much as dread.

I really never bothered going if I could get away with it but times when I did go I could sense their frustration (in the good ones) and their disdain (in the not so good ones).

I can honestly say I was never depressed during my ME/PVFS time. I always had hope that the future would be better. “For now are the woods all dark but still the sky is blue” (or words to that effect) kind of thing. I was frustrated at times and my life did seem to be spent missing experiences and coping with other folks scepticism. When it was at its worst I did think that to die would be OK though I didn’t want to do it to myself but to actually just not wake up again would be fine. Those days weren’t many though and I admire anyone who manages to cope with true depression.

When I heard about RT first I was HUGELY sceptical.

I live in Shetland and though, contrary to popular belief, we don’t all know one another, there was an informal network of folk who had ME/PVFS. Not that we ever met, of course, but I kind of knew of other folk who had it. When I heard that one woman who had it for 20+ years had recovered through RT I just assumed that maybe she had depression so it would work on her but not on me, no, no. Thankfully I also knew a girl who was younger than me and had been unable to go to school at all from about age 9. Her illness and mine were very similar. When I heard (from her Mam) that she was benefiting from RT I had to (try to) sit up and take notice. And also that I wasn’t going to be pigheaded enough to pass up a chance of recovery. If I could sleep on a magnetically charge spotty hanky – I could go for RT.

At the time RT was only available on the Scottish mainland which meant a 12 hour boat trip followed by a train journey to Edinburgh or Dundee. I had another friend who had Fibromyalgia who was keen to go. By this time I had two small children aged 2 and 6 months. The journey would mean two nights away and as I was still feeding the youngest I had to take her with me. It was only with the help of my friend that I was able to do this. I can’t stress how much of a big deal it was for me and my friend to travel south.

So anyway we got the boat, train and taxi to Dundee. All the way down I was thinking about what I would say at the session.

I had a kind of Woody Allen type idea of what therapy would be like so when I sat down I started gushing. Kathleen was far too polite to interrupt and when I finally stopped speaking (an hour and a half later) she said ‘Right well, we don’t really have time now to start the therapy – see you in two weeks time”! Aaargh!

A key part of the therapy was not to discuss it with other folk so I couldn’t even get my friend to spill the beans on the way back in the boat, though she did assure me that it made sense.

By the time we got back south – this time to Edinburgh – I was desperate to be let in on the big secret so vowed to listen and not talk!

Well – the first thing Kathleen asked me to do was to tell her what symptoms I as experiencing right at that moment. This was a revelation for me as I’d just thought of my self as ‘having ME’ I hadn’t isolated the individual symptoms. She then asked me if there were any emotions which I didn’t express. ‘Anger’ I said – ‘I don’t even feel anger’. ‘Ah’, she said knowingly, “Then that’s where we’ll start”.

So off I set back to Aberdeen to catch the boat home with two handwritten messages in my pocket – one telling me to feel and express anger and one to basically enjoy myself! Wow! the first chance came on the train. My friend and I had booked seats on the train with a table (so she could study), near the toilet (so I didn’t have far to go!). However when we got on the train the seats were already occupied by a lady and her family who I could only assume was French as she didn’t seem to hear me when I told her that she was sitting in our seats. According to her there were no tickets on the seat so it was our tough luck. Just then the conductor thingy (sorry no trains in Shetland) came by and ‘sorted’ it out by moving us up to first class. When we got there we had no table which was awkward with the baby and the studying and the toilet was miles away. I could feel my arms weighted like lead, major ringing in my ears and generally knackered. I sat for a few moments (trying to figure out what to do) then told my friend that I had to go and sort it out coos this was ‘my thing’. So I went up to her, smashed her face in and threw her children out the window, na, no really. I stood for a long time trying to pluck up courage to say something – anything and then went over and said I still wasn’t happy that we’d booked the seats and needed the table and how about she took her children up to first class and give us our seats back.

‘Big deal’ you may be thinking but bear in mind for me this was the first time in about 20 years that I’d tackled something like this head on instead of explaining away (she’s French!), avoiding it (it’s alright) or feeling bitter (“you should have seen this woman on the train…….”). She moved, we got our seats, I felt fab and to cap it all about an hour later another woman came and told us that there had been tickets on the seats and the ‘French’ lady had taken them off!

Phew, my ‘courage’ was rewarded and I felt fabulous. I think we even managed an hours shopping in Aberdeen.

That was the first of many incidents in which I had to behave in a different way that I would have done before. Most of them were like this incident –seemingly very insignificant and tiny in the grand scale of things but basically if I put other folks feeling before my own I came off worst. Another memorable one was one day when I was hanging up the nappies to dry and suddenly my arms were like lead, I could hardly lift them and then I figured out that I’d been thinking that I could easily have sewn all 12 pairs of hall curtains – a job that I’d just managed to say no to. I found the ‘not talking about it’ thing really liberating too. If anyone did ask I would say that it was a new kind of alternative therapy – more a third way – not mind or body but the link between them.

I did find it hard in the beginning but my health had been so bad for so long that I was willing to give anything a go and it worked! It also bet cold baths and spotty hankies by a long way. Really for the first time in 20 years I had found something that worked. I had 6 sessions of RT in total – 3 of which were phone sessions.

Once I established the link between my headmind and my bodymind (or head/heart) as I prefer to call it I could see what to do. When it all came together I felt like the clutch was being slipped in and my whole body was driving me, not just my mind.

Of course it wasn’t just French women on trains and hall committees that I needed to express myself honestly to, but those closest to me. This came with practice and I now feel that I have a much more relaxed and honest relationship with them all. My recovery has also had a huge effect on them in that I am no longer physically and financially dependent. It has given them freedom too. My youngest two children owe their life to RT, without which we could never have managed to have had them.

The relief of recovery is indescribable. It’s the little things – those which I thought hadn’t bothered me that much - that I find impressive. I no longer need the toilet every 20 minutes. I can drink coffee. I go to sleep as soon as my head hits my pillow (or more often my children’s pillow!) My partner warms his feet up on mine!

And of course it’s the big things too. I can swim, walk, run, and dance. Play catchy with my four bairns. I’m up now most days by 7.30 and in bed between midnight and one. I enjoy the feeling of delicious tiredness after physical activity knowing that the next day I’ll wake up refreshed.

I made lots of major life decisions when I was essentially screwed up (i.e. trying to please other folk) not least of all physics – though why I felt I had to please the careers officer is beyond me. And now I’m trying to make up for lost time. I realize I should have done something arty and am now a self employed jewellery designer. A job that I love so much it doesn’t feel like work, but I’m learning to live with that!

Its five years and two children since I started RT, and I feel better than ever. I still screw up occasionally and sometimes have to go a piece down a path before I realize I’ve gone in the wrong direction but now I have the courage and insight to turn back. I don’t look back, only forward – though with four peerie bairns (young children) around there’s not much time to look anywhere.

The future is bright and I know that whatever happens to me or my family in the years to come I’ll be able to deal with it as long as I stay connected with my whole self, listen to those inner gut feelings and express my emotions honestly.

My friend and travelling companion recovered fully from her fibromyalgia, my young friend with ME is now ‘sooth’ doing her second degree (it does me good every time I see her looking so well and just being so young and healthy!). I know another 6 folk in Shetland with ME who have recovered after seeing Kathleen. I’ve also referred five folk to her who simply ‘needed therapy’ though I had to choose my words and delivery carefully when telling them this! They are now all sorted.

In my experience there is a cure for ME and her name is Kathleen Haden.

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