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.

Touching the floor

I was looking for something else when I came across this picture and it actually really shows just how I am feeling just now. It is all rather dark at the minute but this morning that crack in the clouds has appeared and I feel lighter in myself. I am not sure where the change came from but when I woke up this morning I just felt that bit brighter, it probably has a lot to do with the fact that the pain in my legs has improved a bit. I noticed straight away when I swung them out from under the duvet and put my feet on the floor. You can’t imagine how good it feels to actually make a small basic movement and to not feel yourself tense up in response to the pain. As mad as that sounds it is actually true these days, my body reacts to the pain before my brain feels it and it really is the tensing that I am aware of before the pain, but the soles of my feet where not screaming back at me that they could feel the floor, they just went there in silence. I used to only have that pain in my feet at the end of a day, it feels as though my feet were on fire and every step I took felt as though it was on shards or glass. It was one of the first things that told me things were moving again, at it’s worst just touching the floor was enough to send shock-waves right through my legs and not just at the end of the day. This morning not feeling it at that point of waking and touching the floor was really good, it didn’t stay away long as once I was walking there was pain, but feeling pain when walking is one thing, feeling pain when doing nothing is another. I came through here and when I sat again the pain vanished, improvement!

A few weeks ago I bought this small massage thing for my feet, it is made of wood and has grooved rollers on it so when you are sitting you massage your feet with any movement you make. I was really pleased with it at first as it made a difference but then suddenly I couldn’t use it due to the nerve reaction, today I am once again enjoying just gently placing my feet on it and without applying pressure gently shuffling my feet on it. That too is lifting my mood so I can say with confidence this is a better day. It is hard to imagine when you don’t live with these things, I know with total confidence if someone had explained all this to me years ago I wouldn’t have come close to the reality. One of the stupidest things you get asked is ‘on a scale of 0 to 10’, whose scale? Even my scale has change wildly over the years, on the scale of when I was a teenager the pain I am in daily now is off the scale I had then, I didn’t actually know that pain went above that of a pulled muscle or bad skin graze and I had no concept that pain could be like this but at the same time livable as well. My scale now, well this morning the background pain is about a 5 and the spikes are as always between 9 and 10, but that is a muscle in spasm and it kind of depends where that muscle is. Spasms normally last from a minute right through to, well when it want to let go. I usually find they grip, release, grip, release rather than stay constant, best description is to say like cramp, even when a bad cramp releases, there is still pain and often it will cramp up again.

Today though, touch wood, there haven’t been any bad spasm, I don’t ever get a day free of them but the further I get into the day the better. I really is a fact that if the day starts well, the rest of the day feel better. I have made it to mid-day and my feet feel good, there is a mild hug happening and the rest of me well all I am saying is, it is the rest of me, and like always it reminds me it is there from time to time. No pain is constant, there are always fluxes but I am on the up side today, here’s to tomorrow.