Sunday, 29 January 2012

Kath's story

I’d just turned 25, was doing well at my marketing job in London, was in the process of buying my first flat and had fallen head over heels in love. Theoretically my life should have been fantastic but I hadn’t been feeling quite right for about six months. In January I stopped going to the gym- I distinctly remember going to the gym one lunch time and being on the running machine for 2 minutes and feeling dreadful and having to stop. Normally I would run for 35 minutes. In February I stopped going out after work as I just felt wrecked and had no enthusiasm for anything. In March I had a day off work every week- I felt like I was constantly going down with the flu but then would be ok again. The week before Easter I was feeling terrible at work again and I had to ask my boss if I could go home. She told me to take a whole week off, rest properly and get myself better. She also told me I’d looked like shit for the last two months! I still had no inkling it was anything serious. Like work I just assumed I’d been overdoing it with work, buying a flat and seeing a guy who lived in Ireland and few days R and R would solve it. As I walked out the office it never occurred to me that I was never going back.

I decided to go back to my parents for a few days as I knew if I was in London I would end up doing stuff for the flat rather than resting. When I got there I didn’t feel too bad. Ironically my mum even said ‘you don’t look ill enough to be off work. However the next day my body basically just collapsed and that was the beginning of my two year ordeal. For the next two years I lived at my parent’s, basically house bound. On a good day (and there were months with no good days) I went for a short walk of around 100m and I never went out except for medical appointments. My days consisted of breakfast and reading the paper, morning TV, bath, maybe an hour of reading or on the computer, lunch, a two hour sleep, more TV, dinner and then some more TV and then bed.

It’s very difficult to describe how I felt as the symptoms weren’t like anything else I’d ever experienced. Basically my body stopped working properly and I just felt awful. Physically I was wrecked and even mentally I couldn’t cope with very much. My friends used to visit me in pairs as I found being part of a three way conversation much more manageable then being one on one.

My most random symptom was my cold head and feet- whenever I slept my head and feet would get freezing so even in summer when I only had a sheet on the bed I would wear a hat (balaclava in winter) and have a hot water bottle.

I was diagnosed very early on as having ME (CFS) but the GP didn’t know much about it so told me to look on the ME Association website. The first thing I looked at was prognosis and while I can’t remember the exact wording it was along the lines of most people never recover and what you need to do is to learn to live within your new limitations. I think ‘you have to be f***ing joking’ is a good approximation of how I felt when I read that and the whole two years I was ill I was always proactive at looking into treatments. I tried just about every form of alternative therapy, faith healing, two very strict diets, meditation and yoga, plus mum and dad spent a fortune at a private hospital having drips, heat treatments and anti-allergy injections. I even made mum buy me some red knickers (somewhere I read that red was a good colour to have close to your core) and on reading the healing power of nature I snuck into the garden more than once when no-one was in and hugged some trees!

I first read about Reverse Therapy (RT) in the summer of 2005 (I had already been ill well over a year) in an article in The Telegraph about Anna Cummings. I remember thinking it sounded interesting and added it to my list of things to try but I was in the middle of trying something else at the time. Then in January 2006 there was another article about her in the Sunday Times magazine. The article explained the process much better than the article in the Telegraph and I could really see how it related to me. Interestingly I only saw the article as a work colleague of a former housemate of mine read it, thought of me and gave it to my friend who subsequently sent it on to me. I’ve never even met the lady in question but Gladys I’ll be eternally grateful to you! Not only did the article really ring true with me but the timing was perfect as I was ready to try something new. I phoned up (coincidentally on my 27th birthday) to get an appointment but due to the article there was a 3-month waiting list to see John and so they suggested Kathleen who at that time was also practicing out of Harley St. I still had a six week wait so I bought the book as suggested and upon reading it I began to think that I really might have found the answer. I definitely felt more optimistic about this treatment than any other I had tried.

Not only did it make sense to me why I was ill but their success rate was enormous and they encouraged (insisted on) getting back to a normal life as quickly as possible, which is what I so desperately wanted.

The day of the appointment finally arrived and mum and dad drove me down to London. We arrived in really good time as we’d allowed loads of time for traffic and we had a long discussion about whether I could walk the 150m to the nearest café and in the end we decided it was best not to. My first impressions of Kathleen were great. She was very bubbly, friendly and positive and much more normal than most of the practitioners I had seen over the previous two years. I remember most of the appointment but the one thing that stands out clearly for me was when she discovered I liked sport, she told me to play 15 minutes badminton in the garden everyday. I was curled up on the chair and almost fell off it in shock as it seemed so completely beyond my capabilities. However Kathleen just laughed at me (in a positive way!) and told me to do it and that I would be fine. My card read ‘My symptoms are here to tell me to stop holding in how I really feel and start expressing myself honestly.’ To put it very simply it was a virtuous circle of doing what the card said and then pushing myself to do things which would now be possible as my symptoms would be decreasing as I was listening to my body mind.

My friends nearly all died laughing when I told them about my card as they said I was already the most outspoken person they knew. However I think I’m like that because it’s who I am, but in certain situations I was easily (and quite pathetically!) intimidated and therefore couldn’t be like that at all. I also think my work was a big contributing factor as I had a marketing job with Tesco. Everyone I knew had gone into similar office jobs after university and it never occurred to me to do anything different. When I was applying to various business jobs a couple of my friends said they were surprised as it didn’t really seem like me. It turns out they knew me better than I knew myself. Firstly I should have been working with people rather than at a desk. Secondly, morally, I wasn’t comfortable about working for such a big business and I’m someone who needs to believe in what they do.

When I left the appointment I felt quite drained as I’d had a lot of exertion by my standards but I felt okay. Coincidentally a couple of things happened that day that tested me and on both occasions I followed the card whereas previously I probably wouldn’t have said anything. That evening I remember thinking that I felt the best I’d felt in ages.

The next day I was due to have two friends visit. Normally friends left after lunch so I could rest but I was feeling ok so my friends ended up staying until about 6pm and I was fine.

The next day I went for my daily walk and walked twice as far as I’d managed for over 18 months. Partly because I was feeling a bit better, and partly because Kathleen had told me to push myself. My legs felt a bit crazy but I just told myself it was because the muscles had been so underactive. The next day I doubled the distance again and within a week I was walking over 1km. On about day six I even broke out into a short run (in my wellies) just to remind myself what it felt like.

We didn’t have any badminton rackets so instead my poor father was subjected to playing Frisbee for a few minutes each day. It was quite comic as it was March and bitterly cold so if you didn’t catch the Frisbee perfectly it was very painful so it felt a bit like one of those sick Japanese TV shows where people torture themselves for fun. One day I also went into town and wandered a round a bit, looked in a few shops and had a coffee. I think I had only been into town twice the whole time I was ill and then either mum or dad were with me at every step in case I had a problem. Kathleen specifically told me to start acting like a normal 27 year old again and regain my independence so this was the first step.

They really were the most incredible two weeks of my life and I know nothing else is ever going to come close. I was making noticeable improvements everyday and I knew why. Not only was I making massive progress but I was doing so many things I hadn’t been able to do for so long. They were only really simple things but my life had been so drab and repetitive that they seemed like the most exciting things in the world. My appointment had been on the Friday and I think it was on my Tuesday walk when I had this overwhelming moment when it really hit me that I was getting better and that everything was going to be alright.

My second appointment was two weeks later and I got the train and the tube rather than a lift with mum and dad. Being on the tube was really weird as I hadn’t seen so many people in the last two years put together. While it was great it also started to dawn on me what I’d missed out on and that all these other people had been going on with normal lives while I had stepped out of mainstream society.

After my appointment I was feeling a bit rough so I was planning to head straight home but I passed a Jane Norman that tempted me in. Two and a half hours, half of Oxford St and well over £200 later, I was feeling fantastic.

One month after my first appointment I went to London for a week to stay with friends and while there were times I didn’t feel 100% however I was unrecognisable from the person that I was only a month before. One of the things I did that week was go to Tesco and quit my job. In the end they had put me on a career break so I was basically informing them I wasn’t coming back. I did feel a certain amount of guilt as they had been so good to me when I was ill, but I knew it would be crazy to go back, as now was the perfect opportunity to have a fresh start. A lot of people told me to go back to Tesco at least until I found a new job (my CV was not looking very good with 24 months off sick) but I know if I’d gone back, even on a temporary basis, I would have got ill again. So I took the decision that felt right, rather than the sensible one, and handed in my letter of resignation.

For my third appointment (a month after my second) I was late as I’d left a bit late and got delayed on the tube. I ran the whole length of Oxford Street and arrived 10 minutes late, red, sweaty and completely out of breath. Kathleen looked very concerned when she saw me however when I told her why I looked like this she laughed and told me I could go. At first I didn’t understand. Then she explained that if I was well enough to be running down Oxford Street, I was basically better and I didn’t need another appointment. I stayed and chatted for a few minutes and she told me I was one of the fastest recoveries she’d ever had- it was only 6 weeks after my first appointment. I left feeling elated and bemused in equal measures. I’d been officially told I was well which was fantastic but it took me a while to get used to this new identity.

I moved back into my flat in London at the beginning of May, two months after my first appointment, and spent a few weeks doing various bits of work to my flat and then got a couple of temping jobs. The big plan was to go off travelling for a year or two- I’ve always been passionate about travelling and doing a really big trip was something I’d wanted to do but felt I couldn’t as I should be concentrating on my career. However I decided I wanted to have a few months having a normal life in London before I went.

I knew I didn’t want to go back into the business world but so I thought I’d try a job doing marketing for a charity. Unfortunately the job I got was very much at the business end of a charity and turned out to be little more than data entry.

By the end of week one quite a few of my old symptoms were back and I was completely devastated. For three months I had been on this most amazing journey of recovery and it never occurred to me my symptoms would come back. I couldn’t face going through it all again- mentally I just didn’t have the strength. I was off work the next week and by the following week I was feeling fine again so I went back. However by the end of Monday I was having hot and cold flushes, my muscles were aching and the old familiar feeling of coming down with something was back so I decided to listen to my body and just quit. The next few weeks I was just about alright but I still had quite a few symptoms. I call this stage ‘my wobble’. It was nothing like when I was house bound but I also wasn’t right and the more I worried about the fact that I wasn’t feeling great, the worse I got. So it turned into an enormous mental battle of not giving in and even when I was feeling bad still going out and doing something. Emotionally, I think those couple of months were harder than when I was ‘properly’ ill. I just didn’t know how long I could keep on fighting for.

I had a couple more appointments with Kathleen and I realised the key was to find a job that my body allowed me to do, therefore health wise I’d start feeling better, I’d have a normal lifestyle again and I’d be busy so I wouldn’t have so much time to think about how I was feeling. We decided that working with people was the answer for me so I started looking into all the possibilities, both paid and unpaid. I found some residential volunteer work in Cornwall which provided holidays for severely disadvantaged kids. It was incredibly intense Thursday to Tuesday and we were basically with the kids from 8am to 9pm. About half way through the first week it dawned on me I was feeling really well and a couple of the other volunteers commented on what an incredible amount of energy I had. From this point onwards I haven’t really looked back and I’ve led a completely normal, healthy life since then.

Back in 2007 I went off travelling as planned and had six months in Central and South America and then three months in Australia and New Zealand. On my return I went to Spain to be an au pair.

I wasn’t completely sure what I wanted to do job wise but I had really enjoyed my time volunteering with the kids so I thought I would get some more experience, plus learn Spanish. The au pairing turned out to be a disaster (the parents not the kids!) but I fell in love with Spain so I got a job teaching English and that’s what I do now.

Since January 2008 when I started working in Spain I haven’t had a single day off sick. I teach 37 hours a week and more than one student has said I’m the most energetic teacher they’ve ever had. I’ve run a half marathon and once I’ve get over a current knee injury, I’m going to train for a full one. I regularly go out at the weekends and don’t come home until 5am. I also went travelling a second time, this time to Asia for six months. I know if I hadn’t been ill I never would have gone travelling once, let alone twice. Neither would my pride have let me be teaching English where I’m paid 20 Euros an hour, while my friends are all on six figure salaries. My attitude to life is also different and I have a much greater appreciation for things that I used to take for granted. While I haven’t forgotten how much I suffered and the despair I felt during the two years I had ME, I can honestly say I’m glad it happened as I know the rest of my life will be so much better because of it.

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