Constant fatigue

I spent the afternoon at hospital yesterday.I left home at 1130am and returned at 530pm. I went by train, which is a lot less hassle than driving, cheaper also! I had several things to do, whilst I was there. I was visiting a friend of mine, who had been taken unwell. I then had a business meeting, followed by my checkup, a visit to the pharmacy, and some business with the charity office.

It was a lovely warm day, but by the time I had done all of those things and was walking to the station, I was absolutely worn out!! I am now 56, and until my diagnosis, had never been ill for a significant period. I had worked all the hours God gave me, and spent my spare time exercising and doing my best to hold back the sands of time! so considered myself to be in reasonable shape.

This has been a concern of mine for some time. I mentioned it to my Consultant yesterday, who explained that the main symptom of my GVHD in my tendons, is inflammation.This means that my body is under constant attack, 24/7 and is therefore fighting back, even when I am asleep. No wonder I feel tired when I wake up, as my body has been attacking the disease all night!

Things have been like this for about 9 months, and there are times, I struggle to motivate myself to do anything, as everything seems so difficult.Due to the work I do, I am frequently invited to do presentations and talks to various people and groups.This is fantastic as it means that awareness of certain issues is being raised, however, I have a capacity for a lot more.

I was asked yesterday, If I would be interested in some very challenging opportunities, which in normal circumstances I would, but I was starting to question my own stamina for larger projects. This is not me at all, as the bigger and better the challenge the more my adrenalin pumps.If I say yes to something, I must do it successfully and in a timely fashion. If I have a doubt, then I won't do it.

How long will this feeling continue ? Of course no one knows! That is life, but it is very difficult living day after day, feeling like that.When I met all the people yesterday, everyone mentioned how well I looked My weight is stable now, I don't look quite so grey, and I am getting some movement back into my body. It is very difficult, when you see someone, to know what is going on underneath. How can you explain how truly rubbish you feel?

Fatigue, is something that most cancer patients face, and unfortunately, the length of time it lasts is indeterminable. For some of us, fatigue is one of the early signs that something is wrong. Then there is chemo, radiotherapy, surgery etc. Even attending a hospital appointment can be mentally and physically draining.

For me, this really is an ' It doesn't happen to me ' time. I'm finding it hard to come to terms with my current situation. Doing some of the simple things in life is so tiring. It has always been my intention to return to work, in some form, but I am concerned, how long this fatigue will continue. If and when it ends, what will I be capable of? I am already resigned to only being able to to part time work. Maybe contract stuff, maybe working from home? Who knows?

When I was given my initial diagnosis, fatigue was discussed, but I didn't really believe that after 5 years I would still be suffering.Before I was involved with cancer, I always felt that some people imagined fatigue! Maybe they weren't used to hard work I thought! Now I know differently. This is yet another example of how people can't really understand something unless they have experienced it.

Sure, we all get tired in our everyday lives. This tiredness comes and goes, generally worse at work and easier in social situations! This leads us to getting frustrated, as we make mistakes and hurry things. It removes our enjoyment, from what we do.

As my team say, ' We have no magic bullet, Mr Lewis'. So I have to try and work round it.That is why I can see the growth in the  social media area of support. To be able to be in contact with people around the world,from the comfort of your own home is a miracle in itself. To be able to share experiences and ideas, is wonderful.This, all at a time that suits you. I appreciate that this isn't a replacement for face to face support, but can certainly complement it in more ways than we thought possible.

How does fatigue affect you in your life? Even if you do not have an illness, do you suffer with the affects. How do you deal with it?

If you have some ideas to share,they will be gratefully received.