The last couple of months went pretty good actually (as far as that is possible for a person with MS) and I’m really pleased with what I’ve been up to after about 2 very difficult years. I thought I was getting everything a bit in order and being able to control where my boundaries are and how to maintain them. But sometimes… well yeah, sometimes it backfires at me. Whoops.
Continue the positive ‘vibe’
It is quite clear that I have some boundaries when it comes to my mental and physical limitations. With MS, it is a must to take rest in time to maintain my functions as smoothly as possible. To my opinion, I think I can still regain some extra body functions when it comes to recovery after the heavy exacerbation I had. I know it takes more training and rest to achieve this goal, but at the same time this is difficult to realize when you have the care of 2 small children. Then all you can do is accept of what is and that some things cost a bit of extra time.
In an earlier blog I wrote about my victory of going back on ski’s for the first time after 3 years and what precedence has been made for this process. The fact that it had worked out felt great and it also confirmed that there was still room for exercise and training to get my muscles in a good and perhaps better condition.
The Dutch annual Carnival was coming up. I live in the part of the country where it is tradition to take part in this 4-day event. I am kinda fanatic but I had to skip for several years. Yes, I watched it 2 years ago from my wheelchair, but that was it. This year I dared to go out again to celebrate a ‘light-version’ of the carnival. I wanted to go out on Sunday with the kids to watch the parade and maybe take them to the party where also other kids are. In that way they would be able to experience this fest for the first time. I couldn’t resist to go out the night in advance ‘to warm up a bit’. It was so nice and you cherish all the littlest of things. Just being present and being able to stand in a crowd, just to look the people in the face, talk to them and walking between them. Yes, a wheelchair is definitely a ‘no-go’ in a bar. Such a joy to go to the restroom by yourself, without trembling over door thresholds, stepping to the side when someone wants to walk by, ordering a beer by yourself and just having fun. Someone asked me if I didn’t need to ‘pay the price’ the day after. I can still hear myself say how wonderful I have been doing the past period and how good it is being able to forget for a moment and I am dealing with MS. Just being me and of course being a little tired the day after, but aren’t the healthy people either during carnival? I think I will notice in the upcoming week and I will take my rest then. I’m doing so well! I thought… Boy oh boy, what was I wrong.
Just a nice evening, nothing strange, we even went home neatly at 23 o’clock. I really didn’t go too far but when I woke up for the toilet at 5 in the morning, I immediately noticed something was wrong as I was losing strength in my legs. I returned to bed but in the upcoming hours things were getting worse and worse. My whole body was starting to ‘shut down’ and I thought I could cry. Not again. Only one function was left, I didn’t pee myself. Legs and arms were extremely weak, sore and painful. Even my phone was too heavy to hold and my hand coordination too bad for texting. I had slurred speech and my eyes couldn’t bear light or moving images. Basically, I was obliged to stay in bed until things went better, but you can not even watch your smartphone or television to kill time. 🙁 Well at least I was able to pee by myself, but sitting up straight was too difficult for my upper body so I just peed lying on the edge f the bathtub next to the toilet. How long everything took? 33 hours. And the The planned day with the kids totally down the drain. This happening while having MS without kids isn’t fun, but at least you can take your rest when needed. In You can afford to have such a ‘Whoops-moment’ and just stay in bed as long as it takes. It becomes a problem when kids depend on you and need to be taking care of. Luckily, it was Sunday and daddy was around to take things over that day. But still, the family is incomplete an such a fun and festive day. Not funny.
1-0 for MS
That MonSter totally punched me in the face again. The past period went so incredibly well. Yes, it takes a lot of planning before something fun can be scheduled and yes, I am very dependent of my monthly tysabri infusion. Basically, it comes down to that when I want to plan something fun, sometimes I need to wait till the next monthly infusion. That is just the way it is. I do have MS discomforts on a daily basis, but it is doable. Yes, the carnival was around the end of my medication, but I didn’t expect such an extremely crash-moment after such a short moment of having fun. Who would expect that? The cause was overload (as talking and standing at the same time takes up too much energy from me) and old symptoms of previous exacerbation will flare up temporarily. Too bad my body didn’t warn me upfront. MS, what a MonSter.
Yes, those things suck and tend to make you feel insecure but nevertheless we still dared to go on a holiday a month later. We went to our beloved Austria, with two young kids of 4 and early 2 years old (and with a little support of grandparents). All the risky ingredients for another fail were there. Taking the kids on al long road trip, a toddler who doesn’t sleep through the night, kids full of energy all day long. As a former ski instructor I couldn’t resist to take my kids up the gondola to show them the ski resort on the mountain. Just being there and letting them play and sled in the snow. For me it was quite normal to take along those ski suits, mittens, helmets and goggles. As a cherry on the pie, I even managed to do some skiing for an hour together with my hubby. It was amazing and felt so good! 1-1 For this mom with MS. :)
So, I do have MS, but MS doesn’t have me. There is no constant line in how I can function, there are ups and downs all the time. It’s tough, but sometimes finding the strength and energy to make the children some beautiful memories is definitely worth the effort to continue the plans and just to go ahead. 🙂