Are you ever doing something and then stop and think ‘I can never get that minute back.’ Think about what you were doing that minute ago before you picked the computer, or went to bed last night. Did you kiss your other half goodnight? Say you love them? Do you tell your family you love them every day? I do, I never let leave Rhanna leave me without saying ‘love you’ we all know that we do but your family are what you are and just because you know something doesn’t mean you shouldn’t say it!
MSA is overwhelming, it seems just like when you are getting there and trying to control the pain, along comes the experience of even more extreme pain! So we phone out of hours emergency service and out comes two very lovely GP’s: “You sure you don’t mean M.S? “
Calmly I reply: ‘No, and hadn’t any one of the GP’s heard of MSA?’ None of them had. Anyway I told them what to give me (honestly) and eventually a couple of jags later I managed to get some sleep.
It is becoming harder and harder to stay the person I am, I am far from perfect but I wouldn’t want to change me. Sometimes we all reach breaking point, the part that you can’t even fake happiness.
I feel like life is laughing at me, I look in the mirror and see someone unrecognisable in front of me, I feel ugly, unfeminine and nothing like the woman I used to feel like. I feel when we go into my usual shops top shop, river island and co that I just don’t belong there anymore, I used to love shopping, mostly I do it online now.
We were meant be going respite on the 1st, we cancelled due to me begin unwell, I ended up with extreme fatigue and was so tired. So respite was cancelled and I think in all honesty we were all a bit relieved, and much more honest with each other. I’m a homebody, it’s where I’m at my best. We will try again with respite, maybe after Rhanna’s exams though. We have Rhannas birthday the 14th and then Andy’s the 22nd they both deserve so much more than I can give them but the main thing is we are all together.
Andy, Rhanna and I owe a gratitude of thanks and much more to someone who has become a very special friend to us, despite his own losses he has befriended us and is there for us whenever we need him…..I don’t need to name you, you know who are and we believe you are a very special man, thank you.
I don’t write this blog for attention for my family and I but because we were approached about sharing what it’s like to live with MSA and how people pull together in times of need, I miss my old life very much, but this is my new one and I just need to adapt to living a little differently than before, with love as always Sam xxxx
EXAMS EXAMS EXAMS aaaarrrgghhhh hehehe. Although I do have to say that my Easter hols etc have been awesome mainly cause of my family then my friends, Hazel, Poppy etc. Inbetween studying I’ve been to the cinema a few times, spent time with Anna, mum’s best friend but mine too (hehe). I love helping her with the horses
We were meant to be going to respite this week with mum but it was cancelled as she was to poorly which sounds weird cause surely if you are poorly best place to be is respite, but mum had the MRSA bug again and a hospice isn’t the right place for her so the nurses just come in here.
Mum and I had a very honest conversation about what is going on just now and we know she not doing to good right now, she said the biggest promise she will make is that she will keep trying, fighting and not give up, I don’t want her to suffer though so I’m glad we had that talk. My mum is my best friend, honestly everyone who has met her, especially recently sees her shine.
I know her and Andy are worried about the changes in the system and the bedroom tax thing and I know we had to cancel some nursing care but I hope we are getting that back. I know my mum cries and cries when she thinks no one is looking. I know she hates that Andy has to do everything and I actually should do more but I get scared in case I hurt mum. Does that even make sense?
Ooohhhh and poor Molly, our dog she hurt her foot and has a stookie on, has to hop everywhere and pit on sad faces because she can get long walks or treats, she is way too cute!!
Monday my friends and I are going to make a song video thingy that should be fun then it’s back to studying, love you mum all the way to the moon and back again, Rhanna xxxx xxxx xxxx xxxx
Warning, warning some ranting ahead, sorry.
Its just over 3 years since I stopped working, that’s not strictly true I suppose, like all carers I do work just a different type of work, this job is harder much harder than any work I’ve ever had to do before.
Some things change, I’ve been brought up to work hard provide and look after my family, if you needed a few more shillings for that special occasion, nice holiday, lovely treat, unexpected bill you would work harder, work longer, work overtime or ultimately look for a better paid job.
What if the person you loved and cared for was dying from a horrible illness what if that person was being taken away from you bit by bit, in constant agonising pain? That’s what’s happening to my wife, that’s whats happening to Sam. What would you do? Do you think you would try and make those last months or years that bit extra special? Would you try and treat that person and make things as good as possible? Would you work harder, longer, work overtime or look for a better paid job to make a difference? Every chance you would!!
If only I could, if only every carer out there looking after there loved one 24/7 could! I’m just discovering trying to stand still and not go backwards in these tough times is much more of a struggle than trying to strive for more!
Imagine this little scenario – you go Tesco and get 2 loaves of bread for £2 or you can fill your trolley to the top for £2! Doesn’t seem right that, does it! That’s how our care system works. Take a basic 2 ½ hours of care (couple of showers a week) £23/wk, or you could have 20, 25, or 30hrs care for…Yes £23/wk, the system actually penalises those that try to manage as best they can, save money, keep some for a treat. There’s no point really is there, let’s all fill our trolley to the top why not!!!
We spent 6 months living and sleeping on the living room floor because Sam couldn’t walk, or get up the stairs and the toilet was downstairs. We fought with the council to get a more suitable property being turned down time and time again, eventually less than 2 years ago they offered us a property, we accepted, delighted, a house to call a home, somewhere nice for Sam to spend her last years, spent what little savings we had, decorate it nicely, floor the property, make the garden nice and a joy to sit out in, make friends, lovely neighbours, have the house adapted for disabled living, then here we are with no change in circumstances, being asked to cough up £40ish/month minimum for a spare bedroom, or downsize!! You seriously couldn’t make it up could you?!
Let’s ask a them to live on £34.00, in fact we invite you to come and try at our house?
What if…just a long shot this one, people who do have a house too large for their needs are offered a smaller house, help with decoration, flooring, moving costs actually helping people, help free up properties, encourage cooperation, encourage those that can to downsize, help those that are suffering through overcrowding…
Or maybe not!!
Lets just bully people who are in a position through no fault of there own! Those who struggle by daily who can’t work harder, longer or change their job, not an option for them, not for me or any other full time carer out there all trying their level best to make a difference, stay positive and through it all still trying to keep that smile.
A massive thank you to friends and family your actions mean more than you will ever know.
Luv ya Sam xxxx