Parenting with Multiple Sclerosis Part 1

Hi! It’s been a while, I don’t know where the weeks are going! To be honest the reason for the longer break between posts hasn’t been anything more than that this is a post that I really wanted to write but, although I’ve it written in my head many times, actually putting the words down on the screen was more challenging than I thought it would be.

The thing is that, although myself and my husband are experiencing all the challenges and excitement that comes with being new parents, we also have an additional factor to consider, you see my husband has multiple sclerosis (MS). He was diagnosed five and a half years ago, and naturally this does have an impact on our family life. We always think of ourselves as lucky, after all it could be much, much worse. My husband has a full-time secure job, his general health is good, he doesn’t need any kind of walking aid and MS isn’t a fatal condition. We know that there are people out there who are facing much more difficult situations than we are but we still thought that, as part of my New Mum, New Life blog, it was important to write about it.

When I started writing this post I realised that it was possibly going to be a bit on the long side so as a result I’ve decided to write it in two parts – please bear with me – I just felt it was important to keep it manageable as a blog post but not to compromise on the details that were important. 

Whenever I’ve looked up information about parenting and MS, most of what I can find seems to relate to mums with MS, but I’ve found very little in relation to dads with MS. However I reckon that there must be plenty of men out there who have MS and also have children. (In fact there is one very famous dad with MS – Jack Osbourne – who is quite vocal about his MS which I think is great, the more awareness of the condition, the better.)

For those that aren’t familiar with MS, it’s “an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” (National MS Society of the USA) There are different forms of MS and it affects people in different ways. It is a lifelong condition but, as I’ve already mentioned, it’s not fatal. 

I’m not going to go into all the different types of MS here as that’s not what this blog post is about, but my husband has primary progressive MS, meaning that his symptoms will get progressively worse. The rate at which that progression happens is unknown but at the moment, keeping fingers crossed and all that, the progression has been fairly slow since his diagnosis. MS is very individual so it can be hard to generalise about the way in which it affects people with the condition, as it is different for each person.

So how does MS affect my husband? Mainly fatigue, painful feet (especially when he’s lying in bed at night), micro-nystagmus (a condition of involuntary eye movement, in his case making it difficult for him to read small print – and fasten poppers on baby grows and vests!), occasional shaky hands and sometimes he can be unsteady on his feet. In many ways his MS is an invisible disability.

As parents the main issue for us is my husband’s unsteadiness on his feet, especially when it comes to the stairs. He can’t manage the stairs whilst carrying our son. He can also suddenly become unsteady on his feet. This means that whilst our little man still needs carrying everywhere my husband cannot look after him on his own, so on the odd occasion that I have gone out without our little man, a family member will come over to be with them both, doing any necessary carrying.

Another major factor is fatigue. People with MS tend to get very tired and it’s not unusual for my husband to come home at night and have to have a nap for half an hour before getting on with the rest of the evening. This happens regularly when he’s off work too, usually more in the middle of the day, whether we’re on holiday or at home. Now we just naturally factor this into our day and we’re both aware that more than likely he will need to rest at some point (on holiday I would always make the most of this by indulging in some retail therapy whilst he rested!).

He also finds walking long distances difficult and is fairly slow so we know that in the future when our little man is on his feet and at the stage where he has potential to just run off, my husband won’t be able to be the one running after him – it’ll have to be me. This has the added bonus in that it just means I’ll have to get fit (high time!) whilst hoping that we have a very good little boy who won’t just run off! But we know what toddlers can be like… so it’s just something that we’re already aware of so that we can manage it when the time comes.

Then there’s the fact that once a week he has to inject himself with some medication that can make him feel quite rotten the following day. He tends to take this on a Friday night so sometimes he can feel quite ill on Saturday – this weekend being no exception – although I have to say it didn’t stop him from doing anything. Sometimes he feels absolutely fine, as with many things with his MS, it is unpredictable.

But the great thing about my husband is that when it comes to his MS his mantra has always been “I’m not going to let this beat me.” Although he will rest when necessary, he refuses to give into the condition. He’s also very open about it, we both are, it makes life easier if others understand why he feels unwell or tired or why I have to ask someone to come and help us out if I have to go out. 

To be honest, I feel so very lucky; one, to be with my husband in the first place; two, to be with someone who, although he has a condition which can place limitations on certain things, is determined to live his life to the full despite this; and three, to have such a great dad for our little man, you see, although there are some restrictions about what he can and can’t do, he is still such a loving, caring and involved dad to our little boy.

So there it is, a little insight into how MS affects my husband and our family. It certainly doesn’t define our parenting but at the same time it’s something we can’t ignore. Part 2 will be with you very soon!

Thanks for reading!

Colette x

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