Chronic Fatigue Syndrome, or M.E., affects different people in different ways but one thing’s for sure it’s a cruel condition with symptoms that don’t present themself to the outside world. This means others are often unaware of the absolute pain and torment you are going through, making it hard for them to understand, accept and appreciate your good and bad days.
As I said, there are few, if any, outward signs of having CFS but I did have one sign of ill health, which a friend picked up on and also advised me to see a doctor. My face was very bloated and it wasn’t the normal chubby face that comes with being overweight.
As my friend was a nurse I took her advice and visited my doctor. We discussed how I had been feeling:
- the debilitating tiredness – feeling like I could fall asleep standing up, how it took every bit of energy I had to get out of bed in the morning and then I would sleep on the sofa all day, after having a full night’s sleep
- the constant flu-like aches and pains – I was unable to lay or sit in one position for longer than 15 minutes as the pressure caused pain in my body
- the depression – black moods, mood swings, outbursts of anger and emotions followed by exhaustion for a day or two (The doctor later informed me that these were nervous breakdowns.)
- very poor memory, concentration and general brain function
- intolerances to foods that I had previously been able to eat
- poor skin condition – regular flare ups of eczema
The doctor took some blood to test my thyroid and this showed that I had an underactive thyroid. I asked the doctor why I had this; he shrugged, said he didn’t know and told me that I would have to take Thyroxine. I wasn’t happy with this response and certainly would not take this drug for the rest of my life!
I felt that there must be a reason why my thyroid had become underactive and I wanted to get to the root cause; taking medication for the rest of my life would possibly control my thyroid function but would almost definitely cause other problems to my body in the long term.
Acting on the advice of a friend, I visited an Endocrinologist and, after taking down some history of my health and taking what seemed like armfuls of blood to test for other illnesses/conditions that presented my symptoms, he diagnosed M.E. He told me there was no cure for M.E. and that I would have to learn to manage the symptoms.
I came away from the hospital with a positive acceptance of the diagnosis in that I now knew what I was dealing with and why I had been feeling so ill on and off for years.
It’s a common misconception that people with CFS are just lazy but this could not be further from the truth. In my experience, it is often those who have pushed themselves to the limit in one-way shape or form or those who don’t know how to relax and take time out. Also, many athletes, sportsmen and sportswomen suffer from the condition.
I thought back over the previous 20 years of my life. For 12 of those years and since the age of 17, I had worked in the City of London, commuting for up to 4 hours, 5 days a week. My day started when I got up at 5am and ended at about midnight when I went to bed. During that time I had been signed off from work on occasions with ‘a virus’; the symptoms of which were milder but similar to that of M.E. Ironically, this was in the eighties when the term ‘yuppy flu’ was being bandied about!
That lifestyle came to an end when I left work to have our son and for the first time ever I felt really well, even though I was heavily pregnant! However, at 36 weeks into my pregnancy I had very high blood pressure and was showing signs of preeclampsia so was admitted to hospital until I was 38 ½ weeks and could be induced.
It was a forceps delivery and I lost a lot of blood. The hospital recommended I be given some blood but I would have to stay in longer and, after being in hospital for 2 weeks already, I just wanted to get home, so I said I would drink some Guinness and eat lots of liver instead…in hindsight I should have done as I was told!
My life fell apart the following year on Christmas Day, when our son was just 16 months old. My husband had a seizure, which we later found out was due to a malignant brain tumour. He was just 41 years old and I was 29.
During the 11 months that followed, my husband had two lots of surgery on his brain and a 6-week, daily course, of radiotherapy, which actually took 10 weeks to complete, as he had to have surgery in the middle of the treatment. This was an extremely difficult time for my whole family and me and I was in a constant state of anxiety.
My husband passed away, in our bed with his mum and me lying by his side. I cried like I have never cried before and that night the realisation that he wouldn’t be there to help me bring up our son and share the good times hit me like a sledge hammer. I was scared and felt so alone.
However, it was our son that gave me the biggest reason I ever needed to carry on and he was the same reason why I had to find a way to get well after being diagnosed with M.E.
I took the diagnosis of M.E. as my body telling me that, after all it had been through, it just needed a bit of tender loving care and thankfully I was willing to do whatever it took to make my body work properly again!
The secret of change is to focus all your energy, not on fighting the old but on building the new. – SOCRATES
I would consider that the level in which I suffered from CFS was medium, rather than mild or severe and I can only tell you how it affected my life and what I did to improve my health. However, I feel sure that whatever someone else’s symptoms are, or their level of suffering, some or all of the things that helped me can help them too. I also believe that the level in which I was suffering would have become severe if I hadn’t taken action when I did. After all, I suffered most of the symptoms for years, which gradually became worse.
The lessons I learned, the things I did and the changes I made are very likely to help not only those suffering from CFS, or those who are recently bereaved, but anyone with stress-related conditions or symptoms.
‘No cure’ the doctor said, well I was sure as hell going to look for one!
If the information I share helps just one person in the same way it helped me, my years of suffering will all be worthwhile!