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Hi! My name is Savanna and this is me living with MS. The MonSter which is Multiple Sclerosis. I’m also a Spoonie.
Not every person who has MS is incapable of walking and uses a wheelchair. This was the image that many people had when I was young and would do the MS Read-a-thon in school. (I know that’s what I thought all MS people were like at that age!) Now I know differently! Most MSers look quite normal from the outside usually, as a lot of the symptoms are invisible. It’s hard to see numbness and sensory problems when you are just looking at a person.
I’ve had 3 major relapses with my MS (even though the minor relapse of symptoms is quite significant to you still as a person, neurologists think they don’t count). I’ve never needed a wheelchair or cane to walk yet. I have had some cases of my walking being greatly affected though! Think waddling like a heavily pregnant lady and feet refusing to pick up off the floor at all! Enough that the Occupational therapist left me a walker ‘just in case’.
So here is a sample of 2 days in my life as an MSer.
It’s hard to get out of bed as I rarely feel truly rested, especially with a toddler who still wakes occasionally at night. It takes an hour to get breakfast for my toddler and myself…my mind just seems to take longer times to process stuff in the morning. We go to a mother’s group playdate, where I get to chat with other mummy’s going through similar stuff with their child. But I spend a lot of time chasing my very adventurous girl. Lunch is had at home, right before her needing a nap. I hope that she’ll go down for a few hours, as my MS nurse insists I should rest (nap) while she does, yet I still have a whole list of things I need to do while she won’t be constantly on my lap. I just manage to doze off when she wakes up. More occupying the toddler inside (as it’s too hot outside for me) and trying to do things around home. Welcoming my eldest daughter home from school. Wondering if I have enough energy to cook something for dinner or if we have the finances to get take away. Bathing the toddler, getting her into bed…which still requires an evening breastfeed as she’s not convinced about this weaning business. Then trying to complete more tasks before bed, which probably won’t be overly late as I’m so worn out.
I’m in hospital to get IV steroids for a relapse that has been going on for over a week. I’ve had numbness/pins and needles in my legs up to my chest, and starting to get that duck waddle back again. My feet don’t pick up properly and trip over any uneven surface. I’m afraid I’ll drop my 11 month old as my limbs feel weak. My reflexes test has hyper reaction to them…extreme jolting movement when they do the bottom of my feet. My muscles ache as it’s over 36 degrees Celsius outside, and even in the air conditioning my central nervous system just seems to know.
And from one day to the next, I don’t know if it will be a Day A with basically no symptoms, but still have to watch myself to not over do it as I’ll pay for that with fatigue later on. Or if it will be a Day B…or worse!
I find I still try to keep positive about it all, as there are worse things I could have than multiple sclerosis. And it’s not much of a life if always looking at those negatives. Life goes on, whether we like it or not! We may as well try to enjoy what we can!
I hope you now have a clearer idea of what MS can be like. Click here if you’d like to read about what is MS.
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