I wish I could start a post without the first thought being that my synopsis of how I feel is yet again starting with tired, I am sure you all get really fed up hearing it as well. It is though just the way things are I’m tired and my legs hurt and I simply want to go back to my bed. There it is said so let’s move on.
I seem to be a little short tempered today, something that I usually control reasonably well, but you wouldn’t believe how much I want to throw something at Adam, once again he is snoring on the sofa, and snoring at such a level that I can’t hear half of what is being said on the TV. I am sure that it isn’t good for him and the occasional long silences aren’t good for me either. It is a mad world where on one hand I want to sellotape his mouth shut and put a clothes peg on his nose to half a second later wanting to poke him to see if he is still alive. He has always snored but like the hairiness of his back it has increased with his age, the back thing I like, the noise thing I don’t, men are really odd creatures.
This morning I came across someone on twitter who is having a tough time with their illness at the moment and I think miss understood what I meant when I said that to be a Survive was easy. All to often we know what we are writing but others don’t see it in the same way, they clearly felt that because their meds weren’t having the desired effect, that they were failing with them. Surviving and coping have nothing to do with what the medical world can do for us, I see them as being states of mind, if you can stop each day and look at your life to see the good feeling out weight those moments of wanting to walk of the edge of the world you are coping you are a survive.
Expectations really do change the way we look at our life, I have no expectations of ever feeling well again, or ever being pain free again, those things will not happen, and nothing any doctor can give me, can make that happy. I have long since written it off as impossible. I doubt I will ever have another pain free day, or a day when I can manage to do the what were once simple things. The one thing that MS has done for me that is totally positive, is I have changed how I feel about life and how I measure those things. I used to believe that if I didn’t not only present my work to a higher than required standard but that I did the same with my home and myself. One hair out of place was totally unacceptable, I was failing. A mad way to judge anything, but at the time I didn’t see it that way. I had to keep up with everyone and out perform them, even when my illness was clearly taking more and more out of me. What made me reevaluate I can’t tell you, but I did, I stopped wiped everything of the board and started again. A good day now means that I receive love and I give love, as simple as that. There are no measurements of it, no sliding scale where failure enters into the possibilities, with that removed you can’t help but to have a good life and to live as a survivor as nothing can bring you down, or make you fail.
As you know I have my days of frustrations, of pain that blinds me a little, days when I have had enough, but they are days, not my lifetime. My life time started again six or seven years ago, as when you reach that crunch point where your life has more to do with your illness than what was once important, you have to start the clock again, as there is no comparison between old and new, and you have to let go of the old. From that point on the majority of it has greatly outnumbers by miles the difficult days, simply because of love. The love I have for Adam and Teressa and the love they give me, to say I need nothing else would be mad, but above the basics of life, as that is all I need, I have everything. I can see how many don’t get it when I say I am happy, as what have I got to be happy about, I see it the other way round, what have I not to be happy about.