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My name is Kathy. I am relatively new to being an unpaid carer and it took me some time 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.

I started writing this 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 shared here too.

(*Trigger warning – this blog post contains mentions of self harm*) 

I left my last blog on the note of hubby getting over pleurisy and pneumonia. I was thankful that he got to the men’s weekend, though I was tired from driving back and forth. I got to see a couple of my friends also, which was lovely.

We are a few weeks on, and M is still ‘hanging’ waiting for the end date for work. Now it looks like September and he is still off sick from work as they made it clear he could not come back in to work.

A week ago I went with him to see the guys in Bath and empty his work locker. He had a lovely chat with a group of guys in the locker room. I did feel a bit sad inside as they are such a nice bunch of guys and they really, on the whole, have a good team working there.

They really like M and at least two of them share our faith. One young guy is really on fire for the faith, but very down to earth with it. We went out with one mate who shares our faith for a cuppa over the road as he had finished his shift. It was lovely to spend time with him, and much words of wisdom were shared.

But everything felt very final for M and I knew it would be a double edged sword for him as it underlined the finality of his visit to work. Last time as an employee. These last weeks have been fragile. And just a couple of nights ago he hit the low frustration point again and self-harmed again.

I woke up to the sounds he makes out of frustration and immediately asked him, and yet again feeling exhausted myself but trying to find inner strength to be strong for him. I came over and held him a while, but was so upset that he had gone there again.

He says it brings him release but then afterwards he knows he has got down to that point once again. We talked a little and prayed. But I struggled to sleep after that for a while.

He is see-sawing at the moment between feeling ‘okay’ with it and getting on the worry chair… he knows that God has got him, but it’s hard sometimes because we are human, and he is battling with the thoughts and emotions especially at night.

My own struggles come with trying to adapt to having him here 24/7, I am only in my 50s and just that day-to-day getting in each other’s space is proving trying.

In so many ways I don’t feel ready for this at this stage of life. I could do with electricity in the summer house really. It’s fine when the sun shines but we live in Britain and weather is unpredictable. It would give me a breathing place when I need time out. As time goes by I may need it all the more. But as with everything, it will cost money to do so it won’t happen for some time I feel.

My days and weeks swing up and down with the nature of relief work and the job I have is really tiring. I am sticking with it for the time being.

We have now applied for carers benefit, now that M is not returning to work. Finance will be much tighter. Summer holidays await…but not going anywhere, just hoping to see friends when we can.

I have quit rock choir as I cannot afford it alongside payments for the gym, which is also good for my mental health away from the house, so I had to choose. Due to the recovery from injury I am still not back to parkrun, and still jog/walk for a mile or two at a go, which is frustrating as I love to run.

But the woods close by can be a space I go to ‘breathe’ and be calm at times. I am returning to my counsellor as I realise I really need to now. I can recognise signs in myself when I am starting to struggle.

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