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.
A new year and new hope. After seeing family at Christmas time and having some lovely relaxing time together and using my new kitchen, a new year beckoned.
Hubby got his PIP but I have to say they are much ‘tighter’ these days than years ago. But he now gets mobility allowance, as well as a blue badge, which is good.
I am not greedy for money, but as anyone knows out there, costs have shot up and with work on our bungalow, we have to find the finance to cover all. The future work on our property we will seek funding for…
After going online and talking to others I realise that the chance of myself getting any benefit right now is very slim. Benefits for carers are means tested, and we have a reasonable flow of money coming in, of which we are grateful, but what they don’t consider is that much of this is tied up in bills and paying for crucial work we needed to be done to our property.
So there it is. I have laid this to rest, until much later in the journey, depending on M’s rate of deterioration, everything is unknown.
As I was saying to someone today, it is hard to explain what our lives look like on the inside and how it plays out day to day. It is so different from even five years ago.
Work/life balance for example has drastically changed for us both. M would never have thought he would be working part time in the role he is in, looking ahead from where he used to be. And as I have said in previous blogs, everything has changed for me too.
Do I enjoy cleaning as a job? Not particularly. But it is a job and the hours are working for us at the moment. It has taken a while for me to get used to this new routine, as I usually go back to bed for an hour or so once I come back. Hubby is usually still fast asleep.
How different is that? Vastly. I have seen how fatigued he is ATM, sleeping a lot more and the leg spasms plaguing him a lot when he is trying to rest.
He is starting FES soon, some of you reading this may have heard of this? Functional Electronic Stimulation. They are going to trial him with this to see if it helps with his leg flexibility, and see if it helps where he has drop foot, and muscle wastage.
I will blog more about this another blog, as to how he gets on.
He is getting more used to his catheter now, coming out his belly. But the whole thing feels so strange at our age, it seems. And yes, I can’t say much on here, but it has affected our love life quite substantially, since the very first was fitted. And this subject for anyone with disabilities that affect them in some way physically, as well as mentally, is huge. Let’s just say, as I have gone along, I realise many relationships split up because of changes and the pressure and stress it can all bring. This is certainly true of MS. And I would be lying if I said I hadn’t thought about ‘walking’ in that first year, because it was so tough.
Love is a strange and deep thing, and our love has evolved and changed through this journey. But in some ways brought us closer. It’s just wrenching inside sometimes, and I keep a handle on myself most of the time. Knowing there is always hope, and always things to be thankful for.
And for me, my faith brings new hope, each day. And the church we both go too, is so accepting and caring that we do feel blessed going there.