At this point I don't want to recite the textbook knowledge about multiple sclerosis, as you can find enough information on the Internet. I rather want to describe the "disease of a 1000 faces" from my point of view, because MS can present in many varieties and
is different for each affected person.
Imagine someone steps on your foot and you don’t even notice!
It is hot outside, the sun is shining brilliantly and suddenly you can barely see anything (Uhthoff's phenomenon)!
You want to move your feet, but nothing happens!
Your feet and legs feel as if they were caught in a clamp!
The upper part of your body feels as if you are wearing a corset and it has been laced to tightly. You feel as if you can barely breathe!
You have gas and are bloated, but can’t fart!
Your legs twitch and shake uncontrollably (tremor, spasms)!
You wake up in the middle of the night because your rib cage is cramping and you hardly get air!
Your bladder announces itself constantly and wants to be emptied even for minimal amounts like 30 ml! A healthy bladder in comparison will only register the need to urinate at a capacity of 350-750 ml in men and 250-550 ml in women. For this reason my bladder has already been paralyzed several times with Botox, in order to increase the capacity. Unfortunately in me this only lasts for about 4 weeks. This procedure can’t be carried out too frequently as the body will develop a resistance. So I can get Botox every 8-12 months.
You are constipated - every day!
You can’t take a shower on your own, because your shower cubicle has this little, but insurmountable step into the shower tray or you can’t move because your muscle spasms are too strong or because you are too exhausted!
Almost your whole body feels furry, tingles and burns!
You feel as if your feet are burning hot, even though they are freezing cold!
You can’t go to many pubs and restaurant, because they aren’t accessible or the bathroom is in the basement or on a higher floor, and therefore inaccessible!
You can't sweat, even though you are feeling infinitely hot!
The bus driver complains to you, because he has to pull down the wheelchair-ramp for you, so you can get into the bus. He says things like, "You are required to have an attendance here!", which of course is not true, but it gives you the feeling of being a burden and threat to humanity!
You are permanently in pain, so-called neuropathic pain!
You can’t walk stairs and you can’t run for the bus in order to catch it!
As a wheelchair user you want to go to the library at your university in the evening as it is open till midnight, but the
elevators are switched off at 10:00 p.m.!
On some days you're too exhausted that you can’t make yourself a cup of tea (fatigue)!
You can’t turn in bed at nighttime and never find a position that is relaxing enough to sleep or sit in! Because of this you are never relaxed!
You feel a lack of understanding for your symptoms, because some people know someone else diagnosed with MS, but being in a much better condition than you are, so these people think, you are making a fuss and that MS is not that bad!
And then the knowledge that your illness, your disability will continue to progresss and the painful uncertainty, how fast or in
what form this will be!
To be honest, it is even worse, but I don't want to lay everything bare!