What is Surviving

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.

Changing Values

After the rain of the past few day it is really nice to look up from my computer screen and see the sun bouncing off the buildings across the road. at this time of day it is still lowish in the sky and the warmth outside hasn’t started to build yet, so only one window open for just now. Even when you are caught inside the weather still somehow seems important, not because you want to know what to wear, or if an umbrella would be a recommended accessory, it’s importance, nor do I find that the weather effects my mood any longer, no it is far more subtle. On dull days I find that I loose track of time, the hours and minutes seem to drift into each other, but when the sun shines it’s track across the sky and the light it sends into our living room keep order to the day, without clock watching. I have found many many things just like the sun, were the importance of them has changed. The calendar means little, there are only a few dates that I have to keep track of, or remember, so days are just days, if Adam wasn’t at home at the weekend I probably would be unaware of their presence.

It isn’t the lost importance of things that is most notable, but the way previously unimportant things are now vital. I have an obsession of having what I want to eat in the house at all times, I really get angry with myself if something runs out before the next shopping day. I don’t remember before getting angry about little things in the past, in fact anger only used to appear if I had been hurt by the actions or words of someone else. Now I get angry at the opposite, inaction is far more likely to anger me than action. Although I have never been a person to remain angry for any length of time, I have become a far more mellow person over all, day after day I pass through it’s time and I am content to do so and I have, not 100% but in that direction recovered from a life long obsession of having my home picture perfect, I can mo longer be found straightening the fringe of a rug with a fine brush, but I do still straighten the odd ornament when I am on my feet.

One of the things I have noticed greatly and that is I seem to have become passionate about the News, the events of the world now have meaning, not just in what might appear as a replacement for being out there and part of it, but I never made the time before to understand and care, I regret that in a way, as now I can’t, I find I want too often to go to the places where help is needed and offer my help to those who need it. It isn’t until now that I see I could have done so much more but I was too selfish as most humans to interrupt my all important life.

Chronic illness isn’t just about being ill, it is about your entire life. Without an conscious effort, or even permission from me, I have changed all my values and never set out to change anything. The important things to me now of my husband and my home have even changed, they are in many ways more important but in different ways. I love Adam and have done from very soon after we met, that love, as it would with most couples who are together for a long time it has deepened, but on top of it an admiration for how he has coped through out all of this, how he has adapted to taking on tasks never before required. My home is as important on the side of a place I love to be and live, but the obsession of it’s appearance has diminished, but my feeling of belonging here and safety has grown. There isn’t anything now I can think of that hasn’t been touched, adjusted, changed or reviewed and not by me but by what MS has done to me.

In the UK, I say that because I have learned that it is different all round the world, but here when you are told by a doctor that you have a life changing and ultimately fatal illness, they tell you wait for a few seconds for your questions, which of course you can think none at that moment and they then send you home, may be with a few leaflets. There is no help, or counseling to help you grasp what it all means, they don’t tell you what help you might need or where to find it. Your given a pile of medication and sent home with an appointment for a year from that date. You go each year your meds may be changed or a new therapy my be recommended, but no one asks how you are coping physiologically, physically yes, but not if you are coping with the acceptance and changes you are dealing with. All of this is just left for you to go through and to deal with in your own way, I would recommend to any one that you learn to accept what can’t be changed, save your energy for fighting what can be. When the day is dull well drift, it won’t do you any harm and you will benefit from the relaxing flow and should the sunshine set your day out to fit its path. Adjusting can be as simple as that.