Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.
It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week I see him for less than an hour before he goes to work, then again for about 30 minutes during his lunch time, but it is really our evenings that seem so short, especially as some days he doesn’t get home until about 6:30, on bad days I can be in bed by 8:30 but I am always asleep by 9. We do have the weekend but unfortunately for as long as I have known Adam, his idea of a day off, is sleeping until at least lunchtime and often until 3 pm, which is the time I take my nap, so in reality, I see little more of him even when he is at home. Like millions of others, Adam has this dream of winning the lottery so we can be together more, but I know that once the initial first months of excitement and spending is over, I still wouldn’t see any more of him, as he would be back to sleeping all day and me all night.
I suppose we all dream about that possible win and what it would do for our lives, I though have one huge problem with the whole idea of getting so much money, I just don’t know what I would spend it on. I know many will think that what I would want more than anything is a home that was more adapted to my needs, but I love my home and for now, I have no desire to live anywhere else. I admit there are some small thing that I would like that I would first have to move home for, but a heated swimming pool and room for Adam to put all the things he never wants to sort out or put away, aren’t enough to crowbar me out of here. Once you are used to being housebound and you have your life established in a routine that works for you, the whole idea of making changes is actually unthinkable, not just because of the problems that I have emotionally with dealing with change, but because I can’t see the benefits in changing anything. Routine is hugely important and my health can be knocked for six with even the smallest upsets, but I know I would get over that eventually. If we had a house built to deal with all my health issues, a place where I could have everything just as I want it, what I would build would be almost identical to what I have now. I can sleep, eat, move about, be entertained, wash and most importantly, spend time here on my computer, I don’t need anything else, so what would I spend that money on, well not on me, any changes would be for Adam not for myself.
This is actually one of the biggest things that I have learned from having no choice, is that choice is often overrated. Almost everyone who receives a huge amount of money start spending on what they think they want, but when you have lived closely with what you have and you can’t change it, well your view of it changes. I can’t imagine now being anywhere else or even wanting to be, it doesn’t matter how much I see on TV, how many things that I know others will instantly see and want, I never feel that now. I have referred many times to my home being my cocoon, but it really is, what I have here has become perfect, even if I didn’t think so year ago, it is now. I just wish others could learn to be happy with what they have, but I know that I will never manage to pass that feeling on, or to teach others how to feel this way. Contentment in your environment is amazing and it is one of the reasons that I am happy, somehow it all happened without any effort on my part.
There are so many changes that happen to you once you become chronically ill, that explaining it to others is often almost impossible, some because I can’t even explain them to myself. I never thought that I would survive just the symptoms and their path through progression, but so far I have. I never thought that I could adapt to so many changes and many are dramatic, but so far I have. I never thought I could stay happy in my home without ever leaving it, but so far I have. Something, somewhere in the past 13 years changed and changed outside even my own recognition, a love of life has grown, not lessened, my happiness has flourished as everything else is slowly dying, my love of people has expanded further than I ever thought possible, as more and more of them left me isolated. My be I can’t explain it as it just isn’t logical, my old friend logic has been blown apart. I didn’t make my life perfect, I just found that by stopping, look and enjoying it showed me that what I already had was perfect, I just hadn’t taken the time to see it.
Please read my blog from 2 years ago today 19/03/12 – Skype, wheelchairs and mothers day
I continued my experiment last night as I had to take another dose before Adam could get to the shops and I mixed it with just the tonic water, I was tempted to add the Gin as well but I prefer to sip that slowly. I have to say that tonic worked quite well, at least to the point that I could drink it rather than gag on it. I used the tonic again this morning and hopefully I will have a good squirt of lemon to add to it this evening.
I had a really nice evening last night I talked via Skype with my daughter for the first time. We didn’t speak about anything that important just chatter about life and her career, but catching up was fabulous. Skype is another one…..