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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.

14 August 2022

Here I am, and life continues… so does the challenges and battles inside too.

As I mentioned on another blog the heat and MS don’t mix too well and my hubby really struggles here. He has also made the decision to have day bags, as he feels it might make his life easier. He has now found out he has a UTI, which is horrid in this weather. And it is quite common with having a catheter. He has been asleep in bed all morning, just coming too now.

To see this in perspective, anyone who read my much earlier blogs or who has known M for a number of years will understand, this was not like him in his previous life. He would have had to been ‘ill, ill’ otherwise he would have been up and raring to go! It’s hard to see him like this.

How do I feel? Again and again I have to check myself. For anyone with a similar situation they will understand. You go through times of questioning: why am I still here? Then pulling oneself back in – it’s because of love. This has happened through no fault of our own. Some things are out of our control.

I had a little weep this morning, thinking of how we used to think and plan for this period of our lives, just us two and not yet grandparents, having the money and freedom to get up and go places. This has all changed and money is tied up a lot right now. Plus trips, even going to concerts, require planning, especially travelling any distance, and it can put limitations on choice, because of mobility and accessibility. We are adapting and getting used to this. And everything can be a learning curve. But I guess I am saying it feels like the freedom has gone.

I don’t feel complete freedom any more. For short trips yes; a day out, morning with friends, yes I am thankful I still can do this in this season. And I hear you if you are a carer who can’t do this. I am not yet in that season and it is looking at what you can do I guess, not at what you can’t. However it does not stop you in your head; it does not stop the feelings.

I have a compassionate visit to make (even though I don’t want to go) to my parents in South Devon and it means leaving him overnight. After conversations with him I became a little anxious. So I asked my own children to call or message at different times to check in on him. At least this would be something.

What some people don’t get is his mental state, and this has been quite low lately. So I am now hesitant to leave him for any more than a couple of days. I have a friend who can come up if I need to go away for a longer stretch, which is a relief and great comfort to me.

As a carer, whoever you care for, it is so important to know you can do this, whether you arrange professional care or a good friend or member of the family. I am learning self-care and respite are an important part of a carer’s ability to keep going and carry on. So if I could give advice as I am learning, do this. As a burnt out carer is no good to the one they are caring for.

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