This is something that has been on my mind for a while.
My wife has many limitations in what she can do, both physically and cognitively. Little things like helping the kids with their homework, making sure the clothes in their closet fit and they haven’t outgrown them or thinking ahead to what we might want to take on a picnic and packing the hamper.
These are little things in isolation, but when they start to happen frequently and many times a day, it is difficult. I work full time and my wife is a stay at home mum. But it does feel like I am having to do a huge amount of thinking and doing on her behalf. I get frustrated and I suppose I struggle to separate the “MS limitations” from perceived “laziness”.
I often find myself exhausted because it feels like I am a single parent of three children as opposed to a married father of two.
We have spoken about making lists and creating reminders but my wife forgets to do this… In the end I find that it’s easier if I just do these things myself.
I don’t by any means want to diminish how the challenges that actual single parents deal with. I guess my point is I feel like one, despite not actually being one.
Does anyone else feel like this?
First blog, first post.
A bit about me. I am a married father of two living in England. My wife was diagnosed with MS as a teenager, before we got married. Before we got engaged, I researched into MS to understand more about this disease. I wanted to understand the worst case outcome and what I was committing to. With hindsight, I can say I did not research enough. Her condition has deteriorated more than I imagined it would. Quicker than I imagined it would. And if I’m being honest with myself, I did not really understand how her symptoms could progress.
We have two kids – a boy and a girl. My wife’s symptoms got worse with each of the pregnancies. Unfortunately they have continued to get worse since our kids were born and she now has primary progressive MS.
Life is difficult – for her, the kids and for me. We are lucky that we have a great support network around us, without which I would be lost.
So why did I set up this blog? Three main reasons:
- I need an outlet. I need to vent and get things off my chest. The focus of others is always on the patient. I get that. But I have come to understand and accept that carers need emotional support too. I’ve not found that yet. Admittedly, I’ve not looked very hard. This blog is my first step.
- I need to understand that I am not alone in what I experience or what I think. Having read a couple of blogs written by carers, I was incredibly encouraged to read that others were going through the same experiences as me and more importantly had the same thought process as me.
- I want to create a support network for carers. If I help just one person through this blog then that will make it worthwhile. I said further above that I have a great support network – and I do. But that is for practical support on day-to-day activities… not emotional support. I have not found an emotional support network for myself yet. Admittedly, I have not looked very hard. I hope that I can help to create one for all of us.
That’s a bit about me and why I have created this blog. I have not yet told my wife that I have done this, but I think I will. I have come to learn that communication is key – even thought it may be one-way if your spouse has MS. I would not write anything on here that I wouldn’t say or haven’t already said to her.