I can only tell you what I suffered and this page is not meant as diagnostic criteria if you feel you may have the condition. Different things work for different people, this is MY experience.
My memory of this time is all a bit hazy, I still have problems remembering things so bear with me.
My ME started back in about 1996 or 7 following a great deal of stress. I had gone through an abusive marriage, expensive divorce and was one step away from invasive cancer, then made redundant! All within a few months of each other. My life fell apart, but, like everyone else, I pushed all this to the back of my mind and kept going, there were still bills to be paid!
I found a new job very quickly at an insurance company and ploughed myself into my work, sometimes clocking up 18-hour days. I soon worked my way to number one in the company and as a result, had more and more work piled on top of me. I loved my work and it helped me forget about the past. Soon, the company cut back on staff, where there was once 9 of us there was now 5, more work, more stress.
Just around the time of all these changes I started to feel sick. It is hard to explain exactly how I felt, just sick. No energy, lethargic, and I was no longer enjoying my job. I wondered what was the point. I had to push myself more and more each day to get up and go to work. This went on for about 6 months. I had a sore throat almost all the time too, which I just couldn’t shake off. I couldn’t be bothered to eat properly and would just grab any old rubbish.
In around March 1997 I got in my car one morning to go to work. I tried to put the clutch down and couldn’t lift my leg. I told myself not to be so stupid! I even tried to lift my leg with my hands but it was useless, I just couldn’t move it. I remember sitting there thinking, I can’t do this anymore. I was scared, I thought I had had a stroke.
I never went back to work after that, I knew I just couldn’t carry on and my clients deserved a better service than they would get from me. So, this was the beginning of a long fight to get whatever was wrong with me diagnosed and just to survive. I was signed off on the sick and, by the time I had paid all the bills, I sometimes only had £10-15 a week to live on. I wondered what I had done to deserve this, after all I had already been through, why me?!
My god, I can’t even describe to you how tired I was. Only to say, at its worse, I slept 20 hours a day. I would wake up at 2pm, eat, have a bath, then go back to bed about 6pm and sleep until 2pm the next day. And I mean sleep, I wasn’t just lying in bed staring at the ceiling.
I had no end of symptoms. I wrote down a list once, I had about 40 different things wrong with me! I wish I still had the list but here is what I remember:
Memory loss: It would be very difficult for me to remember the process of making a cup of tea. I couldn’t remember where things were in my kitchen or just what you needed to make a cup of tea. The whole process could take about 25 minutes!
Concentration problems: I found it very hard to read a book. All the letters seemed jumbled up and it was so hard to decipher the words. I would sometimes have to read the same sentence up to 8 times to make sense of it. I soon gave up reading.
When it came to trying to hold a conversation I couldn’t remember what I wanted to say or if I knew, I couldn’t get it out of my mouth without the words being a jumble. Now I won’t shut up!! I would walk into a room and wonder what I was doing there and what I wanted. I know, we all do that, but not 10 times a day!
Loss of balance: I would be walking along, all be it very slowly, and would suddenly, for no reason at all, lose my balance and crash into something or someone. I remember falling into Marks & Spencers sandwich fridge once and demolishing about £100 worth of sandwiches. I twice collapsed in the store and it was a wonder I didn’t get barred! I used to get very angry when I overheard people saying I must be drunk or on drugs.
Loss of Co-ordination: I would see something on the table and try to pick it up. It was hopeless and would take about 8-10 attempts. My eye to hand co-ordination was useless, like the message from my brain wouldn’t get all the way through to my hand. It would get “lost” along the way. One day I went to the shops and saw a sign on the pavement. My brain and eyes were telling me to walk around it but I just walked straight into it and went flying. If I tried my hobby, painting, I would drop the brush so many times it just wasn’t worth the effort and I gave that up too. One by one everything was being taken away from me.
Hot and cold sweats: I would be hot when it was cold outside and visa versa. I would have the heating on full whack in the summer or walk around stark naked in the winter. I would sweat like it was going out of fashion.
Nausea: I just felt like I wanted to be sick most of the time.
Sore throat: Almost all the time. My voice would fade away to nothing when I tried to talk on the telephone, now that was being taken away from me, my only lifeline to the world. I was too exhausted even to hold a conversation. I couldn’t even make it down the stairs to the shop by now. I had never felt so lonely or cut off.
Muscle pain: Not too bad but I felt stiff a lot, lack of exercise I guess.
Pain in the joints: Every one over a time, but mostly my elbows for some reason.
Sensitivity to light: I almost always had the curtains closed. Now, I can’t stand to be in a dark room.
Weight gain: Some people lose it but I put on about 25lbs.
Well, I could go on and on but that will do. The best way to describe this condition is like having a huge snake rapped around you. The harder you try and fight it, the harder you try to wriggle free, the more it squeezes the life out of you. It got to the point where I thought I would end up in a wheelchair or just shrivel away to nothing and die! I had to drag myself around day to day, just existing. At night I would go to bed and pray so hard that I wouldn’t wake up the next day. I was stuck in a bottomless black pit with no one throwing me a lifeline. This went on for about 2.5-3 years.
The hardest part for me was trying to get listened to. Many doctors still think this is all in the mind. I was told I was depressed and offered Valium. This made and still makes me very angry. I was already a zombie. I call it the “modern day disease” and I am convinced it is brought on by stress. It is very real and I hope the medical profession takes it more seriously as I think we are going to see more and more people with it.
The turning point came when I went to the Social Security doctor. They wanted to make sure I wasn’t pulling a fast one. I nearly fell asleep in the surgery. The doctor asked me “Has no one told you you have ME?” Stupid as it may sound I almost felt better right away, someone believed it wasn’t all in my mind, I finally had a word for what I had.
With my new diagnosis I took myself off to a nutritionist who promised to make me feel better within a few weeks. I answered a lot of questions, giving scores from 1-10 on how I felt. From this list the nutritionist could tell what vitamins and minerals I was short of duly prescribing them. I had also been a vegetarian for about 11 years. I was told I had to try and eat fish again and was severely lacking in protein. I did this and although it wasn’t easy I did feel better. I also ate way too much sugar and to my horror she told me I would be diabetic in 10 years if I continued. I tried to cut this down but I am still guilty of eating too much chocolate.
As I began to feel better due to the vitamins I could eat better and slowly began to crawl out of my pit. It took a long time for me to feel better but it was a start. After about 6 months I was able to hold down a part time job and then a full time job, put myself through college in the evening and save for my bike ride around the world.
But……
There’s always a but isn’t there?
I don’t want any of you reading this to think cycling around the world is for everyone and a cure for ME. I am the only person to suffer from ME and think I can take on the world by bike! How stupid does that sound? Practical is my least favourite word though and the trip gave me something to cling onto in my darkest days.
I still have ME to a degree. I suppose I am about 70-80% over it but when I am on the bike I get days when it comes on so suddenly and I just run out of steam. For example, when I was in Europe with Tony or crossing Canada with Ryan several times I had to stop at about 3pm and we would set up camp where we could. Ryan or Tony would have to do everything, put the tent up, throw me in it and cook dinner. Wake me up, spoon-feed me and then I would sleep again until the next morning and then sometimes unable to move that day. I always knew I was getting too tired, as I would start to drop the bike or wobble a lot.
If I was in the situation that gave me ME in the first place, like lack of sleep, not the right foods and pushing myself too hard then the symptoms would come back and I would have to be very careful, I would have to stop. I tackled the portion I have cycled already in sections and the countries I still want to cycle I will have to do in the same way. This usually breaks down to cycling about 2,000km before needing a rest of a week, then about 6,000km to need a rest of several weeks.
Looking back now, I can honestly say I am glad I was ill. It forced me to take a good look at my life and what I was doing with it. I realised I wasn’t prepared to work until I was 65, retire, live a little bit then die!
For any of you reading this website who suffer from ME, please, don’t give up hope. If I can go from being bedridden 20 hours a day to cycling the world there is hope for everyone.
Good luck and I hope and pray you get well soon.