Among the HSCT ‘veterans’, we talk about the so called “HSCT Rollercoaster” which refers to the course of recovery. Last week, I was on my rollercoaster again… incredibly ill with fever and 5 days in bed. Again. I just lose count. I believe this happens for the 4th time since my return? The recovery really has it’s ups and downs with peaks of improvements, but also deep and painful ‘lows’. In general, body is much better than before the HSCT treatment, but in no-time I can be very sick. And if the body is busy fighting a bacterium (like it was this time), then the focus is on the recovery and old MS symptoms will temporarily reappear, such as muscle weakness and terrible nerve pains.
The sooner the better
While I was in bed last week, I thought how incredibly important it is to start an HSCT treatment as early as possible. The sooner the better, because then there is less damage to the nervous system, which can start to play when the body gets weaker. I was unlucky that the MS has raged through my body so violently in such a short time and has caused so much damage already. In addition, I needed time to come to the right insight, because HSCT is so incredibly ‘boycotted’ in the Netherlands. The wisest choice (with the knowledge of today): then I would have gone to Russia immediately after being diagnosed for an HSCT treatment to stop MS right away.On the other hand, our daughter would never been born, so let’s just say that everything went exactly the way it was intended.
Temporarily on my ‘rollercoaster’ again
For me personally the rollercoaster is very linked to the presence of 2 young kids in the house. In any case, taking care of young children is a lot of work, but in addition they constantly give me colds or flu. It is a vicious circle which is difficult to break. And if no one is ill for a while, then there is a lot going on like rehabilitation and stuff which must be arranged. The weeks emain constantly quite tense. Last week my blood counts dropped too much again. It is therefore important to stick to the recommended hygiene rules and to pay attention to food (nothing raw, everything cooked). Actually, you don’t notice at all when your white blood cell count (your immune system) has dropped considerably. Now I became sick, but actually it is already too late to act on it. And then you start to doubt … should I have used the mouth cap more often? Was it better when I didn’t went to that birthday party? It’s so easy to be less strict with the rules when you just feel good. But on the other hand, it is also important to just keep ‘living’ and that sometimes includes doing nice things.
BUT THERE CERTAINLY IS GOOD NEWS!
This was the first time while being ill, that I didn’t have to worry about the distance to the toilet. Incredibly ill and sore legs, but this I could just walk from the bedroom to the toilet and back, without stiffness, spasms and having to worry I would fall over. For me a striking difference with the past years.But also, we had amusement park tickets for last weekend and I was very worried that I wouldn’t be better in time. I did not have to cancel, the mobility scooter was in the trunk of our car (just to be sure), but I did not need it! A week in bed, but recovered quite quickly and did a whole day of walking through the amusement park. I could just do it! Oh yes, and I went into the attractions! The test was successful: my balance and dizziness have also improved considerably! Happy kids, happy mom!
& nbsp;
Next week I will be back from Moscow for 5 months. The recovery goes with ups and downs and the immune system also appears to be very fragile. But life is so much better already!! Yes, I am often tired, tired, tired…. But with lots of patience everything will be fine!
