For two days now my left arm has been numb from my elbow down and worst in my hand, you wouldn’t think that something as simple as the fact your hand feels as though it is in a thick glove could leave you feeling somewhat lost in everything that you do. It is one of the unusually good things about this mad illness, you learn and go through so many things that others just can’t understand. I have learned in small bites, those things some people live with forever, either through accident, birth or illness. As long as these spells only last for a short while they can even be entertaining, as exploring their effects is always interesting. I don’t know if you have ever had the need to try and touch type with one hand in a sheepskin glove, I doubt it, well I know I never have, but that is how I would describe it right now. I have learned what it is like to be blind in one eye, to have only one hand and even how walking can be achieved when your muscles won’t let your leg bend, move forward or even on occasion take your weight. If there is one thing that can be said about chronic illness, it is true to say that it is never dull.
I bought myself a new range of foods to try, I am still stuck happy to eat cheese, porridge, oatcakes and rice cakes, but I also know that despite the fact that I eat the tiniest, thinnest slices possible, cheese is very fattening. Adam has been trying almost daily to get me to eat something else, usually out of the foods he loves best, but I can’t see why offering me chicken or fish fingers, or pasta a hundred times, make me more likely to say yes, than it did on the first occasion I said no to them. I am so stuck that it even sitting doing the shopping, going through the isles in hope that something, anything might just catch my eye and tempt me, but regardless of what I see, I just don’t actually want to eat it. So the only option I could come up with was to go through all the cheeses and see what I could find that might be lower in it’s fat content and therefore calories. I came across a load of cheeses that I simply had never heard of other than in cooker books for years ago when they weren’t available in this country, so I was left with no option other than to buy one of several different types to find out just what I might like, luckily most are cheap. I learned long ago that what is written about food and what the reality is, are all too often of no comparison when you actually taste them yourself. Thanks to my breakfast I can honestly say that Quark is just like over thick plain yoghurt, not unpleasant but odd on rice cakes, probably as it says on everything I have read, best for cooking with, but I will eat the rest as I simply can’t now as ever waste food. I am just hoping that the rest turn out to be more palatable as one of the salad cheeses I had yesterday, actually cuts into thin slices and tastes good!
I am desperate to try and do something about my weight, even if I can only lose a pound a month I would be happy, well happier than I am now. When you have spent most of your adult life within the correct scope for my height, weighing between nine and a half to 10 and three quarter stone, it really hurts to stand on the scales and see that needle settle at just over 13 stone, it hurts even more as it has become one of the list of things that no one, including the medics, can help me with. Vanity doesn’t end just because you are dying, or because you aren’t out and about to be seen by the world. Vanity is something we all suffer from and before you tut, or deny it, did you brush your hair today, well that alone is a vain act, your life doesn’t depend on your hair looking good. For me though it is a growing issue, part of the problems I am having with my skin breaking down all the time, is caused by my weight, if I were the size I used to be, I wouldn’t have the same problems with skin touching skin, which allows the whole process to happen. Losing weight, would reduce the issue and hopefully push backwards some of the fears that I have for my future, it would also mean that if I still don’t manage to get to grips with things that I won’t be quite so embarrassed by my body when others eventually do have to take care of it. No one, including Adam, has seen me naked for many years now, my weight gain makes it even harder to be comfortable in letting anyone either.
Dealing with becoming disabled has pitfalls along the way that you just didn’t see coming, it isn’t as easy as just dealing with the written down symptoms, not that dealing with them is easy, but some of the hardest things are the ones you would never have thought of, or never even expect. As humans we all have those things we regard as private, as not to be shared with anyone, regardless how ill we might be, I never once thought that my weight could be an issue in any way. Mind you I never thought that I would be sending my husband to the chemist to collect catheters so that I can just empty my bladder. Like it or not, we can all learn to live with pain, with strange sensations and even losing our minds to some extent, we can adjust to being housebound, even to being alone for a large number of hours. But it is those basic personal things that cause the most distress and they are the most difficult to deal with, or get over. They are the things that swirl around in your head every time you stand up and pass wind without any control at all and without bodily regard for those around you. That find you trying to move faster than your body is able as you once again you can feel liquid running on the inside of your leg, or find yourself clenching your buttocks, to stop what is there passing any further. That make themselves felt suddenly, as once again you are aware you are waddling rather than walking as the muscles in your legs are tight and won’t let you move any other way. That won’t permit you the energy, the time enough without pain, just to be able to make love to the person you love more than your own life, yet your mind never think of such things unless that TV put’s it in front of you, to taunt and make you feel even more useless. That leaves you living trapped inside a body, that is as alien to you as though you woke up inside someone else’s, someone who you wouldn’t have ever considered that you might be. These are a fraction of the things that life throws at you and leaves you lost and ask any doctor, they would never put down as anything to do with any of my recognised conditions, although caused directly by all or at least one of them.
Adam actually remembered today to tell me to take my shower today, I know there has been a gap of a few days, but these are the problems that other don’t see either, on Monday I was firstly tired and secondly had the shopping to do, on top of my daily activity, it may be sat here at my PC, but it all has an effect. Yesterday, well the fuss with the TV, followed by dealing with the shopping when it arrived and again the toll that all took on my energy levels and there was another day gone. So my plan for this afternoon means that I have to, regardless what else find my way into the shower, sounds simple, but everything always does.
Please read my blog from 2 years ago today 09/07/12 – Hope in History
I am more than a little aware of the fact that I give a very upbeat impression of disability and I am not going to change that, sorry I can’t it’s just me. It isn’t just an image or a false persona by any stretch of the imagination, I was born with a glass half full nature, I was also born with a, listen to both sides of everything personality as well. I have always in life found it impossible to accept anything without first finding out for myself, the phrase “I am telling you it is right, so accept it”, the most ridicules……
Once again, your ability to describe the difficulties that you face makes it easy to empathise. As always, I wish you the best.