Even pain can be comforting

And another weekend begins… I know it is Saturday as it is just after 10a.m. and I can hear gentle snoring, strange how soft snoring is a comforting sound but raise the volume and it makes you want to scream and hit the snorer. I suppose there are a lot of things in life like that, things that at one end of the scale is good at the other is really bad, you could say it about something a simple as sunshine it is nice to see and lift everyone spirit, but lift the temperature and we just pray it would go away,strangely even chronic illness can become like that.

After so many years of parts of me being numb, to realise you just felt pain when you banged into something is good, but when the pain stops being from an accidental source and start to come from inside, I start to hate it. There really isn’t any half way houses these day, things are, or they are not, but it hasn’t always been that way at the start different symptoms came and went and none were extreme just difficult to live with and difficult to always understand why, those are the ones that started the Doctors visits, trying to live with things that can’t be explained is strangely harder than living with what you understand. If you woke up in the morning to find that you left foot was numb, and you muscles in that leg ached, it wouldn’t take long, a few days, maybe a week, before you would go to the Doctor. But how would you feel if the Doctor then just dismissed it? That is what happens at the start, dismissal after dismissal, so you learn to live with things. Once you have a diagnosis all those symptoms you have lived with, fall into place. Over the years as they progress they get worse and others join in, without meaning to you start to rank them. You also get some odd ones that are actually fun in the short term, but if they persist extremely annoying, just like snoring.

If you can’t think of a symptom that is fun, then I will explain. I get on occasions what I can only describe as slowed down pins and needles. They are so slow that you can actually play with them a strange dexterity game if you like, a bit like one of those light box games were you press buttons to follow the pattern of lights given to you. Like that I can touch the point trying to follow the pattern laid down by my nervous system, if it follows a pattern I try to predict which point next it will move to. OK it is silly but when you are sat watching TV and the program isn’t that great, it is something to do while Adam watches the rest. Occasionally you do get comfort symptoms as well ones that appear as a total blessing, my left leg is always painful just occasionally the worst area goes numb and dulls the pain. I find it hared to understand though how the same area can be both at the same time, but it happens.

If someone had told my 20yrs ago that pain, numbness or pins and needles could ever be fun, a relief, a comfort or anything else than distressing, I wouldn’t have believed them. It just sounds nuts, but life with chronic illness is just nuts in general. There is nothing normal any longer, other than what was there the day before and there today, normal doesn’t stretch any further than that, I can expect something will be there tomorrow but I wouldn’t put money on it being exactly the same. I can’t tell you what starts something or stops it, some pains can be triggered but I know that is the Fibro element others I can be reasonably sure it is my MS, but others still, well who knows. every hour things come and from time to time something new happens, you can start a day well and end it in hell, there is nothing other than over activity that I know will change anything, but that is life and I have to live with it as millions of others do.

Changing Life

I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and fun to be had. I don’t remember when that ended but I do know that is gone. I’m frequently being told not to hold on to the past as it is gone and that I should use my energy planning for the future. I know this sounds bad but I can only answer that by saying ‘what future’. Yes I have plans of getting a new job and things I would like to do my home once I have one, but that doesn’t fill me with the warmth of my memories.

There are for me just as there are for everyone, dark areas which some would rather not remember, yet now I also embrace them. When you are forced to change your world, constricted with no way of continuing what you had, you see everything in a different way. I could moan about not being able to dance, walk or run any longer, make myself feel bad about MS or I can let myself truly remember, remember all the good feelings and find a freedom that reality had taken away from me. I haven’t stopped living I just changed the way I do it. Physicality is so much part of our world that to lose it seems unthinkable.

I challenge you to spend just one weekend at home, were you can speak to on one other than your partner, you can do nothing but sit in front of your PC in the day and TV in the evenings. No you can’t do any housework, a blessing you may think, but think that into the future and the dust that just has to lie there. You can’t read a book as your eyes won’t let you, nor can you knit, sew or any other craft type project. Theses are all gone, as is anything you need to do standing for more than a few minutes. You will then get a glimpse of the easy side of having MS. Then when you wake on Monday morning, I bet you will be happy to go to work, happy to have another person to talk to, happy to be outside. The thing is in my world I don’t wake on Monday morning to anything different than I do any other day. I wake to a limited future with a rich past.

There is still a lot left for me to do and much I want to do, but I have to accept that mountaineering just isn’t going to happen. I thought I would never survive living this way, yet I have and I think the reason why I manage is quite simple. I balance what I have with the richness of what was.

I’m not anything or anyone special. I’m not different or stronger than you, the only difference between us is I have Multiple Sclerosis, that’s all.