In a recent post I wrote about how I wondered if I was being selfish, and that came around because I was finding difficulty keeping up with social arrangements etc. By coincidence I then had a review with my Consultant, when he asked me how I was feeling, and I mentioned my constant tiredness, we then had a very interesting conversation, and I learned a great deal.
Like most of us affected by cancer our situation is unique, so things affect us all differently, as our circumstances can be very contrasting. According to my doctor I am a ‘one off,’ but I guess you can say that about everyone. His analysis of me was that I like to push boundaries, and although I have always taken note of his advice, I have continued to do my support work as much as I can, whenever he tells me to rest!
You see here’s the rub. Although my body feels tired much of the time, my business brain is constantly working and encouraging me with new ideas. It never ceases, until I take my sleeping pills to stop it! So sitting in a chair is torture, unless I am doing something, which these days is linked to a computer. In summary, resting is mental torture, but working is physically difficult.
Doc says that he recommends I slow down a lot of my activity, but he knows I won’t, so he says I have to make my own decision. He understands how important work was to me before I got sick, and is fully aware of the key role it plays for me now. We both came to the conclusion that it is probably one of the vital ingredients that has kept me focused through the many difficult times. It has helped get me where I am now, against all the odds, but it’s difficult isn’t it? He explained that my body is working 24/7 and the concentration I do, is making me tired too, which is why he suggests resting.
Amongst all the issues I could see that may be problematical after my transplant, I never paid much attention to fatigue. I just thought it was an exaggeration of the word tired! I certainly didn’t anticipate it to be a semi permanent issue. For many people reading this, you will understand what I am talking about, but this is yet another thing that you might find hard to comprehend if you are not affected by cancer. To best describe this issue I was looking for a dictionary definition, but came across this from Cancer Research
How fatigue can affect your daily life
“Fatigue can be very frustrating. You and your relatives may underestimate how much it can affect daily life. Fatigue can affect you mentally, physically, emotionally and spiritually. Doctors may overlook fatigue, leaving you to feel that you’ve been left to cope alone. Everyday life can be hard work and you may not have the energy to cook, clean, bathe or go shopping. You may not even feel up to a chat.
All this can affect the way you feel about yourself and your relationships with other people. You may feel very down and not want to go out or be with people. This may be hard for them to understand. You may have to stop work or cut down your hours because of fatigue. This may affect how much money you have.
Fatigue can be a constant reminder of your cancer and this can be hard to accept. You may worry that because you feel so tired all the time your cancer must be getting worse. But it is more likely to be a side effect of treatment, or due to the fact that cancer can cause fatigue. We don’t fully understand why cancer causes fatigue, and we need more research into the causes of fatigue and treating fatigue.
You are not imagining your cancer fatigue. It is very real and can have a big impact on your life. If you have symptoms of fatigue, let your doctor or nurse know. There are ways of managing fatigue and your medical team will try to help you.”
The above definition is possibly the best that I have found. I think it sums up so much of what has been happening for me, and I’m sure many of you also. It explains some of the emotions we all feel from time to time. But how can we continue to ensure that we have a quality of life? There is no magic cure, no tablets to make us feel better, and will it ever end?
They say listen to your body, and if I did that I would be doing very little with my life. I am finding that I encounter some form of mental conflict every time I consider a new project. My mind wants to do it, but my body is hesitant! However, I am beginning to learn how to keep the negative thoughts behind me now, it really is incredible what you can achieve if you can stay in control of your mind! I know the work I do provides me with a focus, that allows me mental freedom from my health situation, which seems to be working for me. But it appears at times to be a vicious circle too!
Fatigue appears to be a massive issue to many, and it can be difficult for others to understand, particularly if physically you appear well. I must admit to being personally shocked at it’s effects on me. Have you been affected by fatigue? How have you managed to deal with it? Is it still a big problem for you, and do you feel people understand this issue?