Just as I suspected last week, I find myself writing a new post, on a Saturday, ironically also the hottest day of the year so far in the UK. The reason for this is that I have had either medical or working appointments that have completely filled up the last two weeks. All of the good stuff were ‘one off’ opportunities, that wouldn’t come again, so I decided to commit to them. Luckily, my health held up and I managed to do some very interesting and fulfilling things.
In many ways, it has felt like the ‘old days’ (before cancer.) My life was never boring, different people and places everyday. There was always a new challenge to look forward to. The major difference now, is that I have to make allowances for my health. Something I never even thought about before becoming ill.
Due to my illness, life planning has become tricky, but with the exception of something unexpected turning up, I am able to organise things. I am now aware of what I can and can’t do, and how long I can do it for. I know when I need to rest, to make the most of my time. My life is a continual balance of both drugs and time. If something happens to upset the equilibrium, I have to be careful.
One thing that is a major issue for a lot of people with long term health conditions is fatigue. It is very difficult to find the cause of it. Is it because of chemotherapy, radiotherapy, a long term regime of drugs, the psychological/emotional side effects of your situation, or a combination of all? Who really knows, but the effects can be very debilitating.
Fatigue, affects us both physically and mentally. Sometimes the physical effects are obvious in our appearance, but often they are not. Some of us are lucky enough to avoid the dark circles/ bags under the eyes, the ‘lived in’ look on our faces, the wrinkles that start appearing. I guess, I could put all those things under the premature ageing process. If people see clues of fatigue, they might have a slight understanding of what is happening for you.
However the issue is if you are looking reasonably well! When people see you looking ok, they seem to think that you have somehow got better. From discussion with many of my fellow patients, they find it tough, in a social environment. Not because they don’t enjoy socialising, but because it uses up a lot of energy.
Each of us has a public and private persona. When we are in public, people expect us to be, the person that they perceive us to be. If at times we are feeling unwell, people really don’t want to hear that, so you expend a lot of energy trying to be as natural as you can. They expect you to join in with all the social chit chat, which on a lot of occasions is tough. Being unusually quiet and withdrawn, seems to encourage more people to start asking questions, and the process continues.
The alternative to this scenario, is to not accept invitations to do things. This in my opinion will only make things worse in the longer term, as you may become more withdrawn. I find it particularly difficult to strike a balance, as previously, I was a ‘social animal.’ There was nothing I used to enjoy more, than being in the company of different people in different environments. Now, I have to think about an invitation. How long is it for, what will I be doing, what time will it finish?
Unless you have experienced fatigue, it is very difficult to understand it’s destructive effects. It is much more than tiredness! Some is caused by physical issues, IE blood problems, or treatment issues, but another major cause is mental. If your brain is like a fog, it can be very difficult to function properly. Even thinking straight can be exhausting.
Just ‘being you,’ can be more difficult than you might imagine. There are days, when you just don’t feel able, to put on the ‘public mask.’ Here I see another benefit of social media. You can still be in contact with people, without the effort that face to face contact can become. Please don’t think that I am suggesting that it is a substitute. In fact far from it, more complementing our lives. The importance of communication, and sharing experiences, cannot be underestimated, in whatever way we can manage it.
In my own life, it is the many invitations which I receive, that motivate me, and get me out of bed in the morning. Although at times it is difficult. I could easily find all sorts of good reasons, why I shouldn’t, but my family and friends gently coax me through. They understand the ‘new me,’ and don’t get upset that I might want to leave early, just happy that I went in the first place!
I am lucky, being surrounded by very supportive people in all areas of my life, who now understand the issues of fatigue. But it has taken us all a long time to get to this position. I couldn’t imagine life with out my ‘team.’ This often makes me think of people trying to deal with these sort of issues, without that kind of support. You can’t just take a tablet, and they will be gone. It can be as destructive to your life as the disease itself.
These kind of issues seem to fall into a ‘grey area.’ They can effect everyone differently, therefore there is not a simple way of dealing with them. The concentration is rightly on the disease, but the side effects seem to be forgotten at times.
If you know someone affected by cancer, it might be difficult to understand, but at times, it can be tough for them, just to be the person you think they are.
I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions.