Really cool to mention: in the meantime the Facebook page of Mama with MS has over 1000 followers! So awesome! Besides that, it’s about time for a proper update. Well, it really get’s a lot harder without any disease modifying MS drugs. My mobility hasn’t dropped that dramatically like for example that my stairlift is needed again. I do need to keep in mind that I preferably stay at home most of the time to save energy and once I do leave the house it is best to have my wheelchair in the back of my car. I’m not just tired, I’m really fatigued all the time now including brainfog. It would be wise to take naps twice a day in the morning and the afternoon, but this is hardly possible with the care of 2 kids. Nerve pain is regularly present, even in my teeth! My eyes are having trouble to deal with moving images and my ears are oversensitive to noise so I regularly need to use earplugs to make it through the day. The headache, dizziness and nausea… well those are real ‘showstoppers’… As soon as that happens I need to go to bed instantly. This is not meant to be a complainer, but this is just the way it is right now.
Anyway… we have a goal and a date. We even make jokes every now and then that it just feels like living up to a child birth because the final waiting till the due date takes a long time. Only this time, no baby will be born… well okay, you could see it as the rebirth of myself. 😉 As a distraction I continue to stay busy with lots of things that I CAN do and just patiently wait untill our plane will leave to Moscow in 2,5 weeks on October 6th!
What will happen in Moscow? Well I prepared a HSCT schedule / calendar to explain what will happen from day to day during my stay. It might come in handy for the family and friends staying at home but also for the MS people who are preparing or looking into doing an HSCT treatment as well.
xoxo and till soon!