I can’t believe that the few tweaks I have made in the past couple of days are already freeing up time, half an hour sooner than usual here I am already writing. I actually though that Adam might have been back at home by now as when he left here he really wasn’t that well, it is either a bad cold or the flu but he quite genuinely isn’t at his best. Adam like me isn’t someone to take time out just because he isn’t 100%, but I thought his boss might chase him out of the building, especially as he has never taken a single day off due to illness. I have to say that we have been really lucky with him not picking up bugs and bringing them home to me. I have been told over and over again that a bad cold or a dose of the flue, could quite easily land me up in hospital with a flare triggered by it. I don’t know why but I think I could honestly count on my figures the number of colds I have had in my entire life, I just don’t really get them for some reason, even when I was having the Chemo treatment. Like all forms of Chemo it suppressed my immune system even further than MS normally does, the course took 3 years to complete and I was still working at the time, although I had been put in a place in the office where few others apart from me, needed to be. You can’t avoid everyone for ever, but it is advised that you take precondition, I know it has been a huge issue for Adam as he is constantly terrified that he will pick something up in the hospital and bring it home to me, I guess that is why he often comes home reeking of the antibacterial hand wash, I am sure he almost baths in it some days.
It doesn’t matter which or the autoimmune conditions you are living with, the most important thing to remember is just that, you “live with” it and not dominated by it. In my case it’s now rather hard to not be dominated by it, once you are housebound, well to certain extent it has won. It may have worried others but as long as I could I went everywhere I had always gone, prepared to deal with any adverse results if and when they appeared, but they didn’t. More importantly I didn’t loose my lifestyle any sooner than I absolutely had to. I actually nearly said “quality of life” instead of lifestyle, I changed it because I still feel I do have a really good “quality of life”, just a different one from before. It is one of those phrases that I have heard over and over again on TV when they are talking about disability and euthanasia and every time I hear it I also normally get rather angry with them at the same time. In most cares those talking about life quality are those who are able bodied and don’t actually live the life of a disabled person. I honestly believe that the only person with the right to talk about it, is the person that it effects and no one else, rather than know it alls standing there saying that with the right care a good quality of life can be established, but who’s standards are they basing them on? My good quality of life will be without a doubt, different from yours. I can think of one thing that to me would be a total nightmare, but I know others find vital to their happiness. It has been suggested over and over that I should have someone to come and spend time with me, to add a much needed social aspect to my life. It would be my idea of hell having a total stranger in my home chatting away about nothing and getting in my way, of my day, especially if they are a none smoker, because I don’t want to be told what I can and can’t do in my home. Despite already not meeting one of the “quality of life” criteria, (which I have just Googled and every different result confirms that social experience is vital to happiness) well all I can say is they are wrong and I am really glad I am still in control, but it makes my point rather well. If I don’t fit the pattern I am sure there are many many others who like wise would find trying to fit the “quality of life criteria” totally destructive, rather than helpful.
Being happy regardless of your health is always going to be the important thing in any life. I know I have been lucky in finding a way of adjusting well to all the changes forced on me, but I still believe everyone else can if they would just let go of the idea that they are missing out on a “normal life”. Happiness these days seems to be attached to things, rather than what is inside you, people seem to put more importance on having a smart phone and a holiday abroad every year, rather than just having something to smile about daily. I haven’t been abroad since I was 12 and I have no desire to go there, I have all that I need right here in my home. That is a home without wifi, or a play station, or Wii, it a home filled with happiness and beauty, neither have costed us an arm and a leg, but all give us the really important things, contentment and love. That is where you find “quality of life” not in a strange list made up by some know it all, who actually knows nothing about rear people like either you or me.
I actually dispise that saying “quality of life” I saw my mother go through masectomys and then radio and chemo therapy all in order to give her this so called quality of life and after doing all that she died a month later. so much for quality of life. Like you said the only person who can really judge the quality of life is the person who is living it I know I would never follow a so called professionals wishes or intent in order to give me the quality of life they think I should have.
I couldn’t agree more. And I also would not like to have to sit listening to most people’s mundane conversations. Social interaction is fine when it is with someone who is like minded, but all too often those who want to talk don’t have anything in common with you and don’t see it either. I love it that your ‘quality of life’ is based on true happiness and not some shallow version of it. Thanks once again for an inspiring post. (And I hope that Adam doesn’t come down with a nasty cold or anything like that :no: ).