I had a few nice comments after my last blog, glad to hear it got people talking. From some of the feed back a few points come through very strongly.
Talking about your illness: People with long term chronic illness do need to talk frankly about how they are feeling and what they are going through, however rarely do. Main reasons seem to be, feeling guilty in case what you have to say might upset the other person, and so not much point as you wouldn't be able to be completely truthful, also because others often seem to find this kind of talk awkward and they are not comfortable to listen to it, or being afraid people will think you are being negative - cannot smile 100% of the time!! Think how often you have asked someone in this position how they are and you get a casual "fine" or similar response, and you just accept that........
Isolation: Many of us feel a real sense of isolation, if you live on your own, or your friends all work and you have had to give up work, you can often go days with out speaking to another person - thank goodness for Twitter/Facebook etc. This also includes a loss of independence as you are no longer earning and feel a sense of total dependency on others, the State etc. With all the changes in Benefits it is also becoming harder and harder to obtain any financial assistance, and the procedure that has to be gone through in order to make a claim are quite simply soul destroying.
So mix up lack of sharing of how you are really feeling, becoming isolated, stuck in the home for long periods of time, and having to go through demeaning interviews in order to try and claim any benefits, is it any wander many people are depressed and find it difficult to feel other than they are struggling on merely to exist, not really to live.
I know myself it can feel as though the flippin illness is all there is, as it controls so much. I rarely go far on my own due to fatigue, many friends are still working, and so much of my time is spent with my mother. While I love my mother and enjoy her company, we rarely do more than visit hospitals for one or other of us, or shops. Places I would love to visit are often places she has no interest in. I would love to go on holiday, but the uncertainty about how I might be,and the nuisance factor always make me hesitate over making any arrangements. So everything is a negotiation or a compromise with the illness.
But despite the many negatives, I feel many of us recognise that we have become stronger people because of this, maybe able to empathise more with people with illness. We are also able to laugh, at times a little inappropriately, but a dark humour evolves in time. Also you really do find out who your real friends are, because you are not always an easy person to be friends with! And, for me an unexpected and delightful extra - the friends I have made online, people I have never met yet I would be bereft without. People I can talk to openly, and can listen to with understanding. My thanks to them. We have our own problems yet they allow us to have a measure of understanding with each other, and pop in and out of each others lives.
Well off for another coffee and a few more pills.