A full time job, without benefits!

 I seem to spend my time running from one hospital appointment to another, either for treatment or a review.If I add blood tests and pharmacy visits to the mix, I spend a good percentage of my life tied up in my health issues. My diary is a necessity, to check what time I have left, to fit in any other tasks that I may wish to do. That discipline continues, for my medication. My wife organises my daily tablet regime, which must be done at certain intervals, some with food, and some without.

This programme has continued to varying degrees, for the last five and a half years. Sometimes more full on, and others less so.I am now treated in two hospitals, so things have got a little more complicated, and travelling up to London twice a fortnight, requires a bit more planning than normal, and of course, more time.More often than not, appointments over run so you can end up waiting around, or rushing about.

I never have an appointment card, for two reasons. Firstly it would be the size of a ‘Yellow Pages,’ and secondly, my priority is always my appointments, which, although I have a poor memory generally,I cannot forget them! My view is that if my Consultant considers it important for me to come to hospital, then I must. After all, it is in my own best interests.

Whilst in hospital last week, some other patients were discussing how difficult things were, when trying to cope with their treatment schedule. As well as routine issues, there were things like special dietary requirements, also unscheduled visits for  radio or chemotherapy. Everything is difficult to cope with, if you remain fit, but if you get sick, then all the planning goes out the window and things have to be rescheduled.

My working background was management, so I haven’t struggled too much with my treatment plan, but I can certainly understand when people do.It can be a very punishing schedule, for someone who’s system is already compromised, at the start of the process! It really can be exhausting. Even sitting around waiting for tests, can be very tiring. You keep checking your appointment time, once the time has come and gone. Checking your number again and again, if you are in a queue for blood testing or collecting drugs. Everything seems to get slower as your time comes. ‘How long have I been waiting here?’ Plays over and over in your mind.

Of course, I have only mentioned the patient, in this process. There are carers that have to totally rearrange their lives to cope with the needs of their loved ones.In many respects being sick is like taking on an additional job. So many more responsibilities and meetings! Not too many fringe benefits though.

Naturally, if your health is not right, nothing else is important, but I have found that it is necessary to have distractions. That is why I get involved in all the projects etc that I do.Not only, is it a way of maintaining my business skills and maybe learning new ones, but they take my mind away from my own health issues, and give me a good balance.
Yes, I find it very difficult at times, to find the energy and enthusiasm, to get involved in things when I am in the middle of a treatment cycle, but I have always felt an overwhelming feeling of satisfaction once I have.

For me personally, my disease and consequential treatment, has meant that I am unable to work, but I do know many people that are attempting to hold down a job or studies, whilst having treatment etc. I am also aware of the issues that they are having, and I often wonder if the fact that they are still having to try and work, is possibly hampering their health.I fully appreciate the financial implications involved, but I am very aware of the stress that this puts on their recovery.

In summary, I feel that many people, including patients, employers and health professionals underestimate the extra stress that illness can bring. Very quickly, there is a lot of additional pressure added to very busy lives. I guess we just have to find our own ways of dealing with it, as I know from personal experience, I know best!

How do you deal with illness? Do you underestimate the added burden on your life?

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