H – Health

H – Health
Included in the definition of Cerebral Palsy (CP) is the fact that it is not a disease or an illness therefore I have a disability, not an illness. However, having had over 40 years of lived experience I can say that CP does impact my health to some extent.

A good example is that a common cold or cough can really wipe me out as I do not have the reserve of energy which I usually rely on. The day my new manager started is a good example. On his first day, I had a particularly bad cold so I was definitely not firing on all cylinders – in fact, I could barely talk! I can only imagine what his first impressions of me were. It therefore took me even longer to prove myself to him and to knock down that invisible barrier of assumptions and reality which I often talk about.

Although I do not fully understand it, and do not have access to a CP specialist to discuss it with, I know that my breathing is often quite shallow and I have to make an effort if I want to breathe deeply. For those who spend a lot of time with me will know that I do tend to cough quite a bit! When I was a child my physio used to show Mum how to pummel me in order to help me to clear my chest. This aspect of my CP is therefore at the forefront of my mind now, given the threat of Coronavirus. Although I have not been told that I need to shield, I am being particularly careful and am only going out if I really feel like I need exercise. I am very fortunate in as much that I can work from home and my manager understands that I am in the vulnerable group. The other aspect of my CP which I do not fully understand is that I do not breathe through my nose rather I breathe through my mouth! My friend, who also has CP, also finds this to be case so it is not some weird trait that I have. It will therefore be interesting if I need to wear a face mask but I’ll cross that bridge when, and if, I come to it!

I believe that the second main way in which CP impacts my health is very occasional bouts of mild depression. To be perfectly blunt I do not always find life easy and I regularly get setbacks and experience struggles. It may be the person who I try to phone, who hangs up on me, or the frustration I feel when I can’t go at the speed which I would like to or the frequent need to prove myself. I believe that unconsciously I bottle all these negative emotions up and something will happen which will make the top come off. Several years ago, my GP prescribed me a low dose of anti-depressants and I still take one every day. It is a shame that there is still a taboo around taking these as they really do help. I realised how much they helped me when I recently came off them, due to them conflicting with a pain killer which I was taking for my jaw pain. For the six months when I was off them I had a terrible time in fact, lock down seems a breeze compared to then. As someone once said if you’ve got a headache there is no taboo around taking a paracetamol, therefore if you have a tendency to feel low there should not be a taboo around taking medication which helps. They are not a total cure as there are times when I still get low and I feel like everything is a struggle, earlier this year I went through such a phase but nothing like when I stopped the anti-depressants all together.

The third main way in which my disability impacts my general health is through tiredness, I find that everything I do takes me much more effort. Joking aside, I think as I get older I get tired more easily and like most people, I find that periods of stress can trigger tiredness. These were the main reasons why I knew I needed to change my job, to a less stressful job, so that I could work part time.

In conclusion, I would say that I do enjoy good health but, on the times, where I do get unwell it really takes it out of me and it can take me a long time to fully bounce back. I really have found working part-time has been such a help to my health breaking the vicious circle of tiredness and low mood which can so easily creep up on me.