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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 full 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.

6 September 2022

I was awake last night, my brain churning… I could have got onto blogging then.

I wonder if anyone else feels as though their life is divided up. Pulled in more than one direction.

I will try to explain…

I was able to make it to a carer cuppa yesterday and I am so grateful I did. I am slowly looking at different groups to see what is right for me. Part of this has to do with age. This has no offense intended to people caring in their senior years, not at all. But I am not there yet.

After the meeting I got chatting to a lady who I had bumped into before (as it turned out) and she ran that group. She was definitely in my bracket of age I would say, but seemed, from what she said, to be the cared for person. However she said the other group, meeting in the same venue later in the month, has more people of mixed ages, which was encouraging.

My weeks vary, with the nature of the beast so to speak, but I will endeavour to look in at some point. I did feel more a part of this group and saw it could become the ‘right one’. I am hopeful.

At different stages of our lives as carers we will be in different brackets of our lives. Or, as I like to say, ‘seasons’. In these seasons we would normally expect certain things or plan for others.

My example would be: in the season hubby and I would be in, without disability, we would be embracing time around jobs, enjoying some freedom as a couple and planning trips and holidays away together.

Where the picture has changed, and in some ways it feels hubby has aged 20 years in front of my eyes, we plan differently, we have limitations; things we hoped to enjoy together have gone. Even going to events and concerts requires far more planning now, and there are times plans have had to be binned, abandoned or cut short because it is simply too much on that day, that week, or things transpire against it and make it impossible or incredibly difficult. I know there will be people out there who can relate.

I said to M today if only DWP knew the struggles on ground level, maybe they could see people don’t make it up, who are truly in it!

As soon as I am out by myself I am on the other side again. My body and mind want to function like any other in my age group (although I do get days of menopause brain fog!). I am still active, and my brain is an active brain that gets bored with the mundane and likes to keep busy… although this can be tiresome if I am awake in the night!

I hope out there are those who can understand my struggle. The feeling of guilt sometimes; the wanting to show support and care, but not feeling ready to give in or give up myself!

As I mentioned before, the mental health side of things is huge for my hubby. The biggest support I give is in the psychological and emotional sense. The physical is growing, where sooner or later we will have to find ways to ‘meet in the middle’. I chatted to him today about this.

It is getting harder going out to walk places where it is a mile or more, because he gets so tired and has to keep stopping. And where inside my brain I could be raring to go, I have to be patient because I care, but on the other hand it is nearly killing me to watch what I see in front of my eyes! This has worsened in only a few months. So I am thinking a motor scooter may be a good investment next year… Which is where Motability allowance would be really helpful.

This is just one area in some ways I feel the gap widening. I am seeing my counsellor next week – the first time since July – and I really value when I can see her. I recommend this for carers, if they can afford and make a space to see someone. I have been able to talk to her about really personal stuff; that I cannot share anywhere else. This has affected every part of our lives. And I know there are others who can relate. Relationships have been known to break up over struggles and strains disabilities can present.

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