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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.

Well, life has its ongoing challenges it seems – in the last so many weeks I have been battling with headaches. It reached a point that I could not function and the dizziness was awful as well, which seemed to accompany it.

After having a non-successful telephone appointment with a doctor, on the bus where neither of us could hear each other, I managed to get a face-to-face appointment, and the doctor prescribed me tablets to take at night, which seem to help, and I am hoping they will break the cycle of crushing headaches.

So, as I analyse all things it seems it doesn’t take rocket science to work out the stress accumulation in my body – being an internaliser I am all too aware how I so easily hold things in and try to hold things together for everyone in my life who matters to me.

Perhaps it is a thing with many carers out there? Perhaps I am not alone in this… Where I took on the little cleaning job as a temporary solution I did not expect it to cause yet more stress… I wanted to get the job done and go home. I cannot say much as I work my notice out, but my eyes have been opened at what a sham a place can be run like.

And I have also realised that this pattern of getting up in stupidly early hours, slogging away for two hours then coming home, was not really working for me. It made for awful sleep patterns, where I was in and out of sleep until I would get up out of frustration before my alarm went off.

All this was contributory to my headaches – with the joys of the menopause this was working against me. Anyone out there relate to this?

Oh yes, I knew it was time to move on and come away and find work, where at last I felt I was more happy… in all of this I was trying to fit our lives, and I put myself last it seemed.

As for Julian House by the way, the shifts just didn’t work for me and hubby. So I volunteer there now.

I will wait for another blog to talk about my new job, but let’s just say I am praying it will be right, all round. It certainly seems positive so far, and they do shorter split shifts, which should work better.

I am praying these headaches will stay away. In the meantime I am trying to work on my self-care. Something I really want to plug for all carers… it has taken me the best part of my life to learn and going forward, as the journey becomes more intense, it will be even more important.

As it is hubby has been signed off for five weeks due to mental exhaustion and it is the second week in and, if honest, it isn’t easy on a number of levels. Not least having our own space in a small house (something that couples of a much older age have to face). But, that is small compared to the struggles he is having with fatigue and mental health.

Seeing him really down some days is really hard. This is why, when he gets out for one reason or another, it does help mentally at least. Though the backfire can happen the following day, if his day has been busier (even for pleasure). And as his wife and carer this can be hard to watch, and trying not to say too much, or the wrong thing. Just because I care… He has to be the one to know how to pace himself in this phase, which is subject to change.

He is now I what he calls ‘the crap gap’ before his next infusion in March.

And me? Well the dentist awaits for me, poorly tooth, which could be also contributory to my headaches…