The ease of being (or the difficulty of being?)

What is it like to be stuck in an MSA body? I often wish it on those around me for just 5 minutes. I also don’t know how another MSA sufferer feels. We are too different.

In any case, I feel primarily like someone who is very-very drunk. For almost three years now I have been waiting for this intoxication to pass and to wake up “sober” one day. Unfortunately, this doesn’t happen, I get more and more “drunk” instead.

I remember, at the beginning of my illness, still undiagnosed, my hotel landlord (I was in a hotel) met me on the way to breakfast and said that I had pulled an all-nighter and still had a fair amount of residual alcohol in my blood. “Well, how was your night of drinking? In which pub were you then?” – he grinned at me in the early morning hour. I was absolutely innocent and good asleep in my bed. Or how I was deathly offended when my ex assumed in an argument that I had a drinking problem. I was completely outraged. Today I know, he knew me well and most likely he saw something.

In any case, it’s hard for me to describe how I feel, especially with a speech impediment. Most people think I can do much more severe things than myself. I also have a hard time explaining that when I fall, no bracing, no walker, and no companion will help me. And I can fall because of an awkward leg position, I don’t even have to stumble. And when I start to fall, I am like a wet bag. Heavy and unstoppable.

I can be as careful as I want, the stupid thing is that my legs (my whole body) sometimes do or don’t do things that I don’t want. Yes, if you don’t have confidence in your own body, you have to experience that!

To what extent I have to do with a chronic fatigue, is questionable. I could definitely lie in bed all day and not move.

To many outsiders, it looks like balance problems. However, that is only part of the issue. Every time I take a step, I’m afraid the leg will collapse. It’s a bit like walking on meters of cotton. Pain is added, in the calf, the knees threaten to break through, pain in the thighs, in the hip…. though this pain is my smaller problem. The whole thing feels like a very drunken pirate with two wooden legs in a heavy swell.

It would be almost funny if not for a few other things.

Outside, the sun is threatening. When things go wrong, my eyes start to burn and water and I can’t see. Blindness, gait problems and balance problems are a very unfavorable combination.

Ascending back pain, loss of strength are imminent. A doctor once told me that this rising back pain is a sign of falling blood pressure, so sit down as quickly as possible. (Gait disturbances and being fast are again a very challenging combination). I have this pain in the neck (precursor of antecollis (excessively tilted forward neck)?), shoulder pain so-called “coat hanger pain”, and pain in the kidney area. In that case it is pain that is guaranteed to force you to sit down or lie down. And I actually tolerate pain very well. However, that is only part of the issue. Every time I take a step, I’m afraid the leg will collapse. It’s a bit like walking on meters of absorbent cotton. Pain is added, in the calf, the knees threaten to break through, pain in the thighs, in the hip…. though this pain is my smaller problem.

The danger of orthostatic hypotension is also added. I have never fainted, I imagine also unpleasant incl. injuries what then a fall brings with it. I’ve “only” blacked out in front of my eyes, and so far I’ve always been lucky enough to be able to sit down quickly (leaning against something also helped). In any case, when that comes (always unexpected), you also do not have time to explain.

During the whole tour you stoically look at your feet. Looking up or to the side makes the carousel effect greater and a loss of balance is guaranteed. Therefore from the “sightseeing” one has nothing, it does not matter how beautiful the area is.

To sneeze, cough or blow your nose you have to stop otherwise you lose your balance again. And standing in one place again provokes blood pressure drop.

Talking and walking at the same time is also rather not.You can only concentrate on one thing. The days of multitasking are over.

What rounds it all up is the unpredictable bladder and bowel action. I’ve been lucky with it so far, but I don’t want to challenge it. Just so you know, when you “have to” it’s a matter of seconds, not minutes. Then to start looking for a public toilet is definitely too late. That’s why I probably have the mania to always want to know where the next toilet is. And it has to be as clean as possible, because you usually don’t have time to disinfect. You also have to say that women often have a harder time here than men, because as a woman you can’t stop somewhere, turn around and pee.

So that’s more or less how it feels when an MSA sufferer goes for a “leisurely” walk.

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