Another day in the life......

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.

For further discussion

Points for discussion

Personal problems in relationships - with family

As this disease is not always the same, ie one day not too bad, next day cannot get out of bed, people find this hard to accept and perhaps to believe at times. This is often when the name calling of lazy occurs, which is of course so inacurrate as well as hurtful. It affects so many things, a few examples, planning outings, holidays & travel, distribution of housework (may seem such a silly thing to add, but believe me it can become a monster of a problem with all sorts of resentments-on both sides growing away), people thinking you just want to be the centre of attention.

Personal problems with friendship and social life

Afraid to make arranegments long term,in case you have to cancel last minute, the need to ensure there will be a seat etc takes away the ability often of sponteniety. Some how it ends up that everyone comes to you to visit as its easier, then they always visit you but forget to invite you to theirs when they are having a "do". You can so easily end up feeling such a nuisance to everyone,till you dont care much anyway!. If you have, at some point,had any problems with your jaw, or innards, you may not care to eat in public either.

Problems with work situations- time off - attitudes

The constant struggle to try not to have sick time off work in case it puts your job in jeapardy, especially when people do not understand AS, and cannot appreciate that you can be quite well one day, yet unable to get out of bed the next. This often causes cynicism in their attitude to you. If you do not have a senior/manager who is sympathetic, often you feel you are being monitored more closely than others, perhaps to show you cannot cope with your job, plus often passed over for promotions, again in case you cannot cope.

Coming to terms with disability

At some point we have to accept that we have a disability. Acceptance of your limitations and learning to live with them can be a very difficult thing to do. Women feel they are the home makers and can find it difficult to let go of control in the home especially. Learning to be kind to yourself is very important otherwise you can end up in a continous battle, fighting your condition and becoming depressed when you realise you will never, ever beat it. You must negotiate a way to live with it in terms of medical assistance to ensure you are as pain free as possible, and with your family to communicate when help is needed/to recognise when help is needed.

Dealing with the attitudes of strangers

People can often be either overwhelming in their need to help, or are too embarrassed to to try to help, so ignore your condition. Instead of irritation, it helps to either thank them and show appreciation for their concern,but explain what you can manage. For those who ignore your AS, that may work fine, or you may have to simply explain the situation to them. or ask people to slow down,or whatever and explain what you can manage. But trying to be understanding and not irritated - At some point the acceptance has to come that you have a disability, acceptance of your limitations and learning to live with them, to try and be kind to yourself otherwise you can end up continously fighting your condition and becoming depressed when you realise you will never ever beat it, you need to negotiate a way to live hand in hand can be very difficult.

This is an article I am submitting, so thought I might as well post here also