First post

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:

  1. 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.
  2. 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.
  3. 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.

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