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Hi, my name is Kathy. I am relatively new to being an unpaid carer and it took me sometime before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51, and around 6 months later the pandemic hit…

I have started writing a blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.

My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are going to shared here too.

It’s been a couple of weeks since my last post and life on a personal level already feels better.

A couple of blogs back I shared how the doc put me on some tablets (low level) to help me sleep and break the headache cycle.

I had a feeling that that job at the time would be a large contributor to these headaches. It was messing up my cycle of sleep and not helping alongside the menopause, where any quality sleep is vital… many women going through this will vouch for this fact.

Well, I am no longer on those tablets. It got to the point, with my sensitivity, I could not cope with them messing with my digestive system and making me feel doped up the day after. So I was glad to be off them truth be told. No headaches since, I am happy to report. Although I am far more aware of tension in my body now and trying to be kind to me and look after myself as I am so often the last person I show any form of love to in all honesty.

Age is a strange curious thing. I am not ‘old’ just to be clear – or what our society calls ‘old’ – I am only in my 50s. Although sometimes it feels like time has passed me by in so many ways, especially since his diagnosis.

I wonder if other carers out there feel this way… even when you are quite new to the journey.

Why is it that the label/name ‘carer’ seems to hold stigma in our society? Why is it immediately people put you in a box it seems? No wonder there is hesitancy to call oneself a carer.

These are the reactions I have experienced so far:

  1. Feeling sorry for you and/or your partner
  2. Asking how they are and forgetting to ask how you are
  3. Sympathy but no empathy (some of the time overdone)
  4. Changing the subject, because of feeling awkward I am guessing
  5. Coming up with assumptions about the one you care for
  6. Another reaction: ‘oh, I didn’t realise, he seems such a jolly fellow’

There it is… just some of the typical reactions I have found and I am guessing none of these are unusual. And for many full time carers they become the invisible one, at least I am guessing that is how it feels.

I mean who ever asked to be a carer?

Who could have even saw it coming or planned for it? Especially in a spouse? Not many I would say.

I have started to learn to think about myself, cast aside all thoughts it may be ‘selfish’ and I have started a new job, which so far is positive. Relief of course so I can manage hours around M, as needed.

I am praying this time, it will come good. After all I am not ready to lay it all down yet. Despite everything in ‘our world’ being an unknown, far more so now.

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