I’m told I had my first IBS attack aged 5. Every time I found myself in any stressful situation I would end up ill with some sort of abdominal bug. I had gastric enteritis through my exams and had to sit them with a bucket next to me.
I had glandular fever aged 21. It took about 6 months to be free enough of symptoms to go back to work. I worked, got married, had 3 kids, moved area, twice..... and then started to pick up viral bug after viral bug. Alongside I was experiencing some major stressful events and put much of my ill health down to that. I started having investigations in my mid 30's. Finally was diagnosed in 1999 aged 38. I had to stop working.
The initial time was really bad... for about 18 months I suppose. I had panic attacks and emotional breakdowns. Sensitivity to noise and light. (I still can't do energy saving light bulbs.) Sensitivity to foods. Sleeping for 15 hours at a time and still needing naps.
I think the worst of it is the name. People hear ME and think it’s all in the head. It may well be, but not in the psychiatric sense. It could well be viral damage that damages the limbic system of the brain or is causing a general inflammation of the brain.... but they really don't know.
I am certainly not depressed....
They put me on anti depressants... which was a disaster. (GP also suggested I have my kids fostered out!!!! Which I did NOT do.) I spent the next 18 months trying to get off the things using talking therapies and homeopathy.
I was also diagnosed with IBS so homeopathy was used and also a good look at healthy diet.
I saw a German locum doctor who told me that in Germany they give sufferers strong doses of vitamins and minerals and gave me Forceval... which I still take and is very good. (Although within 15 minutes of taking it I feel nauseous so I now take it at night)
My GP encouraged graded exercise.... which was a disaster. Gentle exercise, as in moving all my limbs, is really good but pushing the body to do more than it is able to do, causes my energy packs in my cells to crash and I ended up yoyo-ing between relatively good health and no health at all.
My GP talked about pacing.... listening to my body. If I felt low I was to try and walk round my very small garden. If I felt worse I was to rest more, if I felt better I was to do more activity. To a point this was good advice, although at times I couldn't walk as far as the garden, let alone round it. At better times slowly walking by the sea or along a river is really good.
I was told to keep my mind active (when awake enough to concentrate) and to keep a diary of my feelings, emotions and my nightmares. (My sleep is very disturbed.) This really helped.
I was to write what I felt.... and then pretend a friend was telling me this... and reply as I would to that friend. I realised I was still trying to fit too much in to my good patches.
Home pressures took me back into very part time work, which I really enjoyed and managed for a couple of years, but eventually had to stop again. I started off volunteering in primary schools, and then worked in a corner shop, which was fun. My mind told me I was ready to re start my career. I managed to complete a return to nursing course, but found I couldn’t maintain the role. I also had 3 teenagers to support, both financially and emotionally. Forcing myself to do it meant my body shut down and stopped me doing anything.
My GP tried giving anti depressants again... the old type which have an effect on sleep. I tried it but soon got side effects again so stopped.
Research and internet forums... and the friends of ME support groups have been invaluable. GPs know very little and most of the treatment available through them actually make me worse, so it became really important for me to find out the truth about what was happening to me.
Research can become obsession though and my head can become so confused it becomes counter -productive. Computer glare can cause headaches and brain fog prevents me taking in information effectively and remembering anything I read. Little and often is better than detailed study for me.
There is a lot of confusing and often contradicting research going on. It’s clear that some sufferers out there are using A LOT of money on alternative therapies and are no better. Many out there have found their way to good health though with simple self care and good self management. The Chronic Fatigue Syndrome Forum helps me to keep things in perspective. Others have tried therapies and have first- hand knowledge of the possible pit falls, but also have a good insight into the reality of what the real benefits are.
I moved area and was sent to an ME/CFS clinic.... which was a disaster. The clinic started during the morning, which is my worst ME/CFS time. I ended up an emotional wreck. I'm sure these clinics are good when they fit in with the sufferers' pacing routine.
I was given Melatonin to try and sort out my now awful sleep pattern. This seemed to work for a short time, but I quickly began yo yo-ing between bouts of IBS pain or food poisoning type symptoms and flu type symptoms again.
I was diagnosed with fibromyalgia in 2009, which is more pain based symptoms (rheumatics) after having a couple of car crashes (I wasn't driving). I was also found to have cervical spondylosis. This new diagnosis created a time when GP tried insisting on anti depressants again. They do like to give them out !!! He is still looking for an anti depressant I can tolerate with no side effects. I think I’ll be waiting a long time.
A friend and fellow suffer went on the Lightening Process. £550 for a weekend. It’s not a cure. It’s a retraining. These things are based around Neuro-Linguistic Programming (NLP) among other things. My friend IS doing well and has managed to take an 8 hour a week job. She IS doing much better. I can't afford it though and it another morning start. I FEAR paying out all that and ending up like I did at the ME clinic.
I don't have much faith in doctors now. Not that they wouldn't help if they knew how. They just don't know... science hasn't caught up enough yet to how to treat this condition.
2010 has been one bout of infection after another.....
Benefits don't recognise this condition so ...as I'm married... they pay my pension stamp and that’s it. I can't work though. I get the lowest rate of DLA and I can have a disabled parking blue badge....which is worth a mint on its own.
My husband is becoming exhausted doing lots of hours to make ends meet and keeping up with the things I can’t do at home... and the constant fear is whether he too is could ‘catch’ ME/CFS. Talk of a viral link compounds this fear.
My car is freedom to me. It is a mobility aid, but I have to be careful not to drive when exhausted. Brain fog can easily get me lost (in my local neighbourhood). I organise everything to avoid mornings completely as I know I can't function well then and will get ill if I try.
So now I have accepted that I CAN'T function at the same speed or pace as other people.
I CAN'T just accept medications because I WILL get side effects. BUT I CAN live a normal life at my own pace and speed now I know what they are. I no longer feel guilty that others don't understand or accept my limitations. I've learned to self care and to be honest.... no I can't always help other healthy people out. I know I'm not working but there is good reason for that.
My children have been absolutely fantastic about it all. They provide the best medicine. Meals out and lots of laughter....
My husband (now) is wonderful and very supportive. We both follow 12 step programs which help us both to accept powerlessness over what is happening to us and around us. It’s also helped us to develop a spiritual side to our lives which again helps us to let go of the fear and the guilt.
I began a new therapy in 2011 through a trusted homeopath. I have to travel to get there so I need someone to drive me. The day leaves me exhausted. The therapy used an EIS scan on the first appointment, which for the first time has given me concrete evidence that my body is out of balance. The results are compared to normal body responses showing clearly that my brain is under functioning while other body organs are over active or out of balance. I have homeopathic drops, a diet which avoids dairy, meat and wheat as well as other basic foods and encourages consumption of alkaline vegetables and fish. I don’t cut out foods, I replace them with things I can have. I also have acupuncture and use bio-resonance.
I am finding this useful treatment although as yet, I am nowhere near symptom free, but I am waking up earlier and the quality of my sleep is much better. I’m slowly trusting that I can survive all day now without sleeping. Having my mornings is a new pleasure and I am filling that time (on good days) with using wii fit yoga and balance exercises. I have to remember Spoon Theory though and not go mad and do too much on better days. I can still overwhelm the energy packs in my cells and experience pain and exhaustion. Since starting this treatment though this has not meant a month of crash symptoms. It seems to mean instead a couple of resting days. It’s easy to spend these days fearing the start of a big crash or feeling that the new treatment isn’t working and I’m kidding myself that I have made any recovery at all.
This is when the Chronic Fatigue Syndrome Forum comes into its own. I can get some virtual hugs, but also lots of humour which makes me laugh. It also allows me to remember from those who are newly diagnosed or struggling more than me, that I am actually not as bad as I have been in the past. I can bounce ideas of what’s happening to me and get back sense and perspective from people who know and understand. It helps me to start to put one foot in front of the other again and to realise the bad days do pass and better days are waiting beyond them.
Thank you all for being there x