Big Life Changes

Hi everyone, I really hope that you are all well and, if you are in the UK, have been enjoying the warmer weather that we have had as late.  I have to admit, that I much prefer it when it is cooler, the heat just seems to make my MS body be even slower and more fatigued than it normally is.  I don’t want to wish our summer away at all, but if temperatures could stick to about 23° that would be great, thanks 🙂

I can’t quite believe that we are already into August and the kids will (hopefully?) be heading back to school soon.  The time since ‘lockdown’ seems to me to have gone so fast, though I am sure to many, it hasn’t.  It has been a difficult time in many ways; trying to keep to some kind of routine for the kids (and me!), thinking of new ways of working (hello Zoom calls) and reduced face to face time with loved ones.

Big Life Changes

The difficult times for me actually started pre-lockdown – it is hard to type, but at around Christmas time, my husband and I made the decision to separate. Our plan was to continue to live together with the kids for a couple of months, I would have my holiday to see my sister in Australia in March and then my husband would move out of the house on my return… but Covid-19 struck and, well, that is that. Until last week, we have been in the same house with the children trying to keep some semblance of normality for their sakes.

When I was little – and in fact up until a few years ago –  I thought that my marriage was going to be exactly like my parents’; they’re still together after almost 46 years and are like two halves of the same person.  As an outsider looking in, the one word that I can use to describe their relationship is ‘devoted’; they even still hold hands.

I’ve written before about supporting each other when a chronic illness like MS is part of a relationship. But the reality is, no one knows how an illness is going to affect a relationship until they experience it themselves. When it comes to marriage, vows are made to support and love your significant other ‘in sickness and health’ but the pain of seeing your partner’s health change, the worry associated with their safety and the effect that the illness has on both their lives can be catastrophic.

For me, I felt guilty that my MS impacted so much on our family’s ability to be spontaneous, or go places that we used to go to.  Inaccessibility is a massive issue when in previous years your most enjoyable holidays involved cliff and hill walking around Robin Hood’s Bay or backpacking around Thailand. My MS has changed me – at least outwardly.  I would love to still be spontaneous. I would love to still be active.  I would love to not have to think about ‘can I actually physically do this?’ – but I can’t.  The reality of living with Multiple Sclerosis has changed me.  My husband and I have been together for almost 18 years; neither of us is the same as the 20-somethings we were when we got together, but we didn’t expect this much change.

I’m Not Alone

One of the most eye-opening radio programmes that I have recently listened to was ‘Walks Like a Duck’, a brilliantly honest, emotional and, at times, funny short series featuring Louise Halling, a lady I am lucky to know, who has Muscular Dystrophy.

On the third programme, Louise interviewed her husband, Mark about her illness. The lines that struck me the most? Where Mark says he feels angry and sad that disability has such an impact on family life and that he worries about just how small and limited their lives will be in another 20 years.  I know that this is what my husband worries about too… MS was the thing that has lead to our separation.  I can completely relate to Louise’s experiences and my husband, who also listened to the programme, agrees with Mark.  For him, though, disability and the changes it imposes is just too much.

Another brilliant account? That written by Devin Garlit, an MSer like me, ‘Did MS Ruin My Marriage?’. In it, he says that it isn’t MS itself that ruined his marriage but the effect that MS has had on him – how having it has charged him both mentally and physically – has.

As for me, it is early days, and I am still so grateful to have a friendly relationship with my kids’ Dad – he is a great father, he still helps me as needed with ‘big’ jobs around the house and his family are brilliant.

Is this the life I wanted? No. But I have it and I am going to go forward as a disabled, single Mum who is so lucky to have friends and family around me, offering support and help.

Till next time

The Balancing Act of a Life with MS