As I believe I may have mentioned before, my sister – Serena Lesley – has been battling CFS since late 2011. This is a subject that I have been wanting to cover, but as I am completely unqualified to talk about this with any actual knowledge I decided to ask Serena if she could write a short piece on her personal experience and email it to me for blogging purposes. Here is what she has to say on the subject:
“Chronic Fatigue Syndrome, or CFS, used to be called ME (Myalgic Encephalomyelitis). Originally it was commonly known as ‘Yuppie Flu’ because it happened predominantly to the young, upwardly-mobile city crowd who worked long hours and dealt with not only the physical stress of working long hours, but also the mental stress that came as part and parcel of their careers. CFS usually begins with ‘flu-like symptoms, and we all know that ‘flu should ideally be treated with rest and recuperation. However when you don’t have the option of resting no matter how awful you feel, when there is simply nobody else who would be able to do the important things that you are currently doing, when you have responsibilities that cannot be delegated and cannot be dropped, when the stress overwhelms you while you carry on regardless, that’s the point when your body reaches its limit and puts itself into ‘sleep mode’. That’s the theory, anyway, and that’s exactly what happened to me.
CFS symptoms can vary between sufferers. They are very similar to the symptoms of FMS (fibromyalgia), in fact some doctors maintain that these are simply two variations of the same condition. The two main symptoms are extreme tiredness and constant muscle pain, and which of the two conditions you are diagnosed with will usually depend on which of these two symptoms affect you the most.
I never could tell whether or not my extreme tiredness was caused mainly by my body having to constantly deal with muscle pain, but either way, there were some days that I was simply unable to even walk to the bathroom a few steps away from my bed, resorting to what was basically a crawl in order to get there. Being in constant pain and fatigue does odd things to your brain, leading to confusion, loss of memory, bad coordination and other such fun things. Painkillers are a necessity and on ‘good’ days these may even enable you to leave the house, albeit with the aid of a walking stick and sometimes even a wheelchair, however painkillers can also add to the lethargy while creating a sense of disconnection from the pain (and reality) rather than removing it. Being in constant pain also does odd things to your body; when it hurts to move and you don’t have the energy to stand (or even sit) in the kitchen to cook proper meals, inevitably you put on weight, which takes more effort to move around and adds to the tiredness. Add all this to the list of other symptoms such as digestive disorders, weakness, headaches, a disintegrated sleep pattern, and a few other random and seemingly un-related things (sore throat, nausea, skin complaints) and you have almost the full picture. Lastly, but perhaps most importantly, sufferers are highly likely to suffer from depression. Reading back through the list of symptoms, it’s not difficult to understand why.
Most commonly, diagnosis is made by a CFS specialist, to whom the sufferer’s doctor will refer them once they have been ill for a 6 month period. However it is here that my experience begins to deviate from what is most common. Rather than a specialist sending me to a ‘pain clinic’ to talk to other patients and learn how to cope with my body’s new limitations, I have a doctor who just happens to have previous experience with CFS, and for this I am truly grateful. My doctor has had reason to research this condition and its possible treatments, and has experience of his previous patients recovering almost completely. My doctor prescribed me with tablets which, once they had been gradually increased to the correct dose, prevented the constant pain (by raising my pain threshold apparently, as decreasing it is one of the things that CFS is responsible for). He advised me that the only way past my lethargy was to get fitter, albeit gradually and gently.
These prescription-only tablets are unfortunately not a perfect solution. They are TCAs, a previously prescribed type of anti-depressant which has since been found to be of benefit to patients with chronic pain; however they do have some rather unwelcome side-effects. They can cause further weight gain in addition to that which was caused by the CFS symptoms (and of course additional weight makes exercise harder), tiredness (which is less than ideal if you were battling with lethargy even before you started taking them) and TCA withdrawal doesn’t simply trigger a return of the pain that you are taking the tablets for, it also triggers plummeting mood, tears, negativity, paranoia, the full shebang of miserable mental health. It became clear that in addition to overcoming the physical symptoms of CFS to get fit, I was going to have to overcome the side-effects of the medication that was reducing the pain. I was also going to have to accept that these tablets are a control for CFS rather than a cure, that I will need to continue to take them long-term, and that if I don’t have an available supply, I am highly likely to become depressed and possibly suicidal. However if it comes down to a choice of those things or being in constant pain long-term, it’s a bit of a no-brainer, so I chose to take the tablets and work on doing what I could to mitigate their drawbacks.
I’m a fairly stubborn person. The weight gain could best be dealt with by calorie-controlling my diet while the reduction in pain allowed me to begin walking, slowly and covering only short distances at first but constantly increasing my exercise to increase my abilities. My weight started to drop which made exercise easier, and with the pain held in check (so much that I now felt it only on ‘bad’ days) there was no reason not to take control and increase the demands that I was making on my own body. Sure enough, I gradually became able to do far more on a ‘good’ day than I’d ever been able to before, which made the ‘bad’ days less bad, too.
My doctor told me to ‘get fitter to feel better’ and I have done my hardest to prove him right. In my opinion, I’ve succeeded. My sleeping pattern is now normal. I’ve reduced my weight by 35lb (2 and a half stone) so far. I am now capable of walking for 10 miles, or running for 3. I can honestly say that I feel generally better and fitter now than I did immediately before I experienced the circumstances which triggered my CFS. I experience very few ‘bad’ days now (though I’m achingly aware that the CFS is lingering there in the background, waiting for me to give in to it, but that’s not going to happen anytime soon). And once I realised that I am in control of my condition rather than my CFS controlling me, I also realised that there is nothing stopping me from doing the other things in life that I had previously not seized the initiative to do, and I decided to correct that. So, in 6 months time, I’ll be marrying the man who met me at my best, looked after me without complaint at my worst, and with whom I intend to dance at our wedding.”
I think it’s fair to say that I have the most stubborn, strong-willed, inspiring sister in the world! Thank you very much, Serena, for putting your feelings and experiences in to words so that we can help to educate others.
CFS can happen to anybody at any time. In my sister’s case, she developed the condition through caring for an autistic son, helping her daughter with a new baby and running our mother to and from hospital for chemotherapy. Being on the other side of the country and battling my own issues caused by my epilepsy, I was unable to travel in order to allow her to catch a break and have some time to herself.
Any help that I might have been able to provide would not have benefitted Serena much and would not have prevented her illness. If you have a family member attempting to juggle too much all at once then please step in and back them if you can. Without my future brother-in-law Serena might have fared far worse than she actually has done.