When I was a teenager, I was tired. A lot. I did a lot. I was at school all day, in the top third of my year group and completing hobbies most lunch times and every evening after school. I took full part in hockey and netball in the winter and athletics, rounders and tennis in the summer. I played 2 instruments and practised nearly every day. I had a dog and used to walk him every morning for 20 minutes and most evenings if I was home early enough. I was part of the school choir and orchestra as well as the county level orchestra. Then there was homework. Every half term I would get a sore throat and have to have at least half a week in bed recovering. That was how I spent my holidays. In bed, just about managing to feel better in time to go back to school.
I went to the doctors as my family thought this was all rather odd. They sent me for blood tests. I hate needles – this was a horrific ordeal for me. The results came back normal. The doctor asked “Do you not like sport?” And sent me on my way. “There’s nothing wrong with you” was written between the lines. This happened over and over throughout my teenage years. I ended up asking for special consideration to go to sixth form late on a Wednesday morning (when I had noncontact time) so that I could just catch up with some sleep. I was always tired and every time I got ill I would get an infection. A simple cold would turn into a chest infection or sinus infection that required antibiotics to shift. Even with the help of drugs my body would take a week or even two to battle through.
Once I got to university (having messed up my A Levels), I went to the doctors again. I was feeling sad as I felt I didn’t fit in at all. I was terribly homesick. I cried all the time. I got a terrible sore throat in the first month. I saw other people in fresher’s week, out until all hours, up again the next day to join sports clubs. I slept for nearly 12 hours every day and then didn’t have the energy to walk into town. I went to the doctors, they diagnosed depression and put me on antidepressants. They did not help. I was more tired if anything as they sent me to sleep. I was undermined mentally as I had been labelled as “not coping” and even the drugs that were supposed to help weren’t. I stuck out the 3 years. I even took on a summer project (I was always better in the summer as there was less work to do and fewer bugs around to be caught by my dodgy immune system). I continued to be on the antidepressants for another 2 years after university. I completed teacher training, lots of driving, the worst year of my life. My job became my life. It was all I had the energy for. I used to sleep as soon as I got home from work, get up to do a couple of hours work and then be back in bed by 8.30 at the latest. By Wednesday, every week, I would be taking paracetemol to get out of bed and ibuprofen to keep my aches at bay. I caught every cold everyone else got but twice, once at the beginning and once at the end of everyone else having it. I felt sick most days, on dizzy days I would take seasickness medication to keep going to work.
Every holiday was the same as when I had been a student. I was ill. I could not catch up with myself. I could not plan anything – just in case I had to pull out due to sickness. I went on holidays with my family. I had to take to my bed half way through the week for a whole day. We wouldn’t even have walked that far, but being, just sitting, in the heat was exhausting. I have probably felt ill in every country I’ve visited. Chest infection in Barcelona, slept through a 24 hour drive to North Carolina from Virginia, headaches in Paris, swollen ankles in Italy and dizziness in Crete. I have many photos of me looking sick, tucked up under a blanket (I got so cold I wore thermal vests and socks even in summer), at every family event for 7 years. In the background looking green and darkly circled eyes peering from under my heavy eyelids.
My anxiety levels were so high I used to not physically be able to move out the front door some days. I honestly have no idea how much was the job I was doing and how much was the M.E. I know that now the M.E. is gone, I go to work like falling off a log. I love it most days. I do not dread the entire day. I do not have to promise myself I can crawl into my bed in 6 hours. I actually got out in the evenings. I enjoy my orchestra instead of just “getting through” it. I enjoy going out for a pub quiz, a walk, planning weekends away – knowing that I will be well enough to go and enjoy it. I do not worry that I am going to look sullen because I know that I am going to have enough energy to enjoy it all.
So then I go to my doctor again and they, again, diagnose me with depression. I have a month signed off sick from work. I sleep for most of this. I try to catch up with myself. It didn’t work. A couple of weeks back and I’m back under pressure, with little energy to fight back with. I go back to my doctor, see another GP who understands what M.E is and refers me to a GP with special interest in M.E. in Lowestoft. I go and tick 49 out of the 50 boxes. She asks me how many hours I work a week – I say 50 average she writes down 15. She doesn’t believe I have managed so far with that level of work. I get a diagnosis. They introduce me to pacing. This does not fit with working in a school. I cannot take 10 minutes rest every 60 minutess. My lessons are 100 minutes long. I am non-stop from when I arrive at 8am to when I leave at 4pm and then have a whole day’s work left over for Sunday. I took myself off and did some research. My mum did a lot of the computer work for me as I was too ill. We found meditation, relaxation techniques and a Professor Findley. I asked my doctor for a referral and she was happy to do that. The relaxation techniques worked to reduce my anxiety levels but my energy was still extremely low and aches and pains with shooting pains were an everyday occurrence
Professor Findley gave me reassurance. I had to be driven to the appointment and on the way home I slept. It lasted 2 hours only. He prescribed supplements and an occupational therapist. The occupational therapist was really helpful. She set out a timetable based on what I needed to do and took into account the limited change allowed by my job. This all seemed to help at first. After a year, I got to October half term and was having full on panic attacks about going back to work. In my head, work meant feeling ill. I handed in my notice with no job to go to. I managed to work out my half a term’s notice and get a job as an LSA at the local college for 3 days a week. I was also asked to cover 3 days a fortnight at my old job as I had left them in the lurch a little. I did both for a bit and then dropped down to one. I found it all so much easier to manage my symptoms with this limited work life. I still, however, took to my bed at least once a week with symptoms and was napping most afternoons. No social life at all. Then I started to feel better in the summer and managed some socialising. I met a boy. He was fine with my limited life and the fact I didn’t work full time. I managed some normal weekends away but always planning meticulously to limit the impact of my symptoms. I was also still in therapy under Professor Findley.
I took on some more teaching work alongside my LSA work in the following October. I did well at it. I still had symptoms and couldn’t live the rest of my life on the money I was earning or put up with the way M.E. dominated my life. I looked in to the Lightning Process after I saw a couple of articles in newspapers about how it had helped others. I had seen it in the original research but it was so secretive that I couldn’t analyse it enough to trust it. It seemed too good to be true. I thought they were making it up. I thought that if it worked – it proved that M.E was all in my mind. I couldn’t deal with that. Now I have been through it, I don’t care how it works. It works! I am fully recovered. Going at life hell for leather. Living the life I love, day in, day out. Playing with my nephews and niece, socialising more nights in the week than not, enjoying every trip, every conversation. Mum says she’s “got her daughter back”. Sometimes she doesn’t like it because I’m too sharp, I catch her out, I make a joke at her expense, the mental fog is gone. It has taken a lot of getting used to for everyone. I had to learn to put myself to sleep at night, as I didn’t fall asleep as soon as my head it the pillow – or even before that. My mind was too active, I wanted to be up and doing all the time. Now I can do whatever I like, spontaneously. No need for resting before or after in preparation.
I just haven’t learnt to say no yet. I am doing everything that I couldn’t do before – all at once – it’s like I’m trying to catch up, make up for all those years I missed, no the M.E. stole from me. I am not angry anymore, I am using all my energy to run my life the way I want to. To do and du everything I ever wanted to, although it took me a while to figure that what that was. My life had been so limited by the M.E. that when Kathy, my LP teacher, asked me what I wanted to do – I started really small. I wanted to walk in London all day without painkillers or taxis. Without carefully planning my day. Without having to rest the day before and couple of days after. Without plastering a smile on my face so the people who had arranged the day wouldn’t be offended by my lack of gratitude. Now, tomorrow I am going to help my bestest friend get the venue ready for her wedding. I am the one driving her mum, not the other way round, for 2 hours before spending the day carrying things to and from the car. I will then go out for dinner with the other bridesmaids and talk and laugh and eat what I like without feeling nauseous. Saturday will start early (7.30am hair appointment!) and the day goes on till midnight and I’m not worried about coping. I will not be coping – I will be enjoying! Six months ago to the day since I learnt the process, I am not only attending my best friend’s wedding, I am fully involved and loving being able to support others through what is bound to be an intense day. I am so grateful to Kathy, Phil and the Lightning Process for giving me the best gift ever – my life.