Hi! How are you doing? I hope you’re enjoying the summer. Here in Ireland we’re going through a patch of rainy days, so it doesn’t feel much like summer at all. But at least the days are warmer than they were – just about!
Some of you may remember that my husband suffers from multiple sclerosis. I wrote about this in some detail back in 2019. We don’t let it dominate our lives, but it is always hovering in the background. I’ve not really written about it since but now that our little man is two-years-old and a fully-fledged toddler, I thought it was a good time to give a little update.
*Just before I carry on, I just want to note that multiple sclerosis affects everyone with the condition differently. So my husband’s experience will be different to that of another person with the condition.*
In many ways things have got easier. It’s probably a combination of the fact that we’re more used to being parents and that our son is now able to do more for himself. The lack of wearing baby grows helps too – those poppers were a bit of a nightmare for my husband to fasten! Three on a vest are manageable.
My husband’s occasional unsteadiness was an issue in the early days – no one wants to feel unsteady when carrying a small baby, especially up and down the stairs. However, that is no longer an issue, partly because our son can get himself up and down the stairs, but also because my husband’s confidence has grown too. Our son does still sometimes get carried up and down the stairs and my husband has no problem doing this. If he feels unsteady he simply won’t do it.
The fact that our little man is now fully mobile (more than fully mobile!) makes a positive difference too but it has brought with it new challenges – the need for speed! Our son is speedy – he loves to run, and he loves to climb – so quick reactions are key. Reacting quickly is something that my husband struggles with. It’s fine in the house, he’s quick enough to stop our son scaling a chest of drawers or the bathroom sink. However, it’s being out and about that’s the problem. If our son was to run off my husband simply wouldn’t be able to catch him. So, this means that he can’t take him out on his own, I need to be there too.
To be honest, this was an issue we anticipated a long time ago so it’s not really an issue in a way. It’s just the way it is. And we know that it won’t last forever. As our little man gets older, starts to understand about safety and gets an understanding about his dad’s condition, this will change. For now, it means that I’m gradually getting fitter. My personal trainer is a two-year-old! So that’s no bad thing.
My husband still suffers from fatigue on a daily basis, it’s such a common symptom of MS. I can’t even begin to understand the level of fatigue that my husband feels. This isn’t helped by the fact that he has constantly painful feet, made worse by lying in bed at night, which can sometimes mean that he doesn’t sleep that well. Although fortunately most nights that isn’t a problem – probably a combination of having a busy full-time job and a two-year-old son.
My husband’s fatigue does mean that it can often be too much for him to be left at home on his own with our son for a long time. It really depends on the day as to how he’s feeling. I can go out for a few hours on my own, but I’d never plan to be out for a whole day as that would be too much. If I had to do something that was going to take up a day and I couldn’t bring my husband and son with me then we’d ask a family member to help out. But thanks to the pandemic that hasn’t been an issue!
Another thing that I think neither of us really think about too much as we’re so used to it, is the fact that every weekend my husband doesn’t know if he’s going to feel well or not. On a Friday evening he has to self-inject himself with medication which often makes him feel rotten on Saturday. This can be temporary, just in the morning, or it can last all day. But if we’re very lucky he feels okay. I’m always so grateful for those weekends – so is he!
However, none of this stops my husband from being a hands-on dad and sharing the load with me. Breakfast time has become their time – something which I appreciate so much, just having that time to myself in the morning makes all the difference! And they spend so much time playing together when my husband isn’t working. I love hearing the shouts of “Daddy!” from our little man when my husband arrives home from work in the evening. Our little man doesn’t see a chronic condition, or that there’s even anything wrong, he just sees his daddy.
MS is always there but we just have to adapt and change around it. It does limit us at times. It is a challenge at times. But my husband never complains. And we know that there are people who face much bigger challenges than we do.