On Thursday, I was talking to some of the people in the ward and was shocked at all the resources they didn’t know about. One is an older lady who uses a wheelchair, and pretty much stays at home 24/7. She can walk for small distances, and uses a manual chair to get about the rest of the time. The day before we’d played table tennis and bowling (a rough version of tenpin bowling) and had really enjoyed herself. For years she’s been locked in her home, watching people out of her window, feeling like they had a life and she did not.
I asked her if she would now consider going out, and she said she would. I said it was a shame she didn’t have an electric wheelchair/scooter, even just to go to the shops and have some independence. She said she did own one, but it was so bulky her husband couldn’t get it out of the house very easily, so they didn’t bother, and while she would love to look into local clubs that perhaps ran sports for people with disabilities, she didn’t want to have to rely on her husband to take her. I asked her if she’d ever used community transport – our local one is called Community Voluntary Services (CVS) that have cars or buses that pick people up for a small cost. Others have Dial a Ride. She’d never heard of it! I also told her our CVS Shopmobility rent out scooters and chairs, which she could borrow to visit a place.
She had also never heard of Disabled Facilities Grants, that can pay a full or partial grant to make changes around the house like level access showers, stairlifts – but the one that would benefit her is door widening and a ramp.
The other lady I was speaking to was desperate to reduce her hours at work, but was worried about the money. I told her I’m pretty sure she could get Working Tax Credit – if you get DLA your minimum working hours is 16, not 30. I also thought she may get some housing benefit and council tax benefit. We use the website http://www.turn2us.org.uk/benefits_search.aspx to have a look, and she will get them. Excellent! She can walk okay on a good day, but tends to faint and get dizzy a lot due to her POTs, a heart condition we both have, but affects her quite badly. I believe she may have a chance of getting a blue badge, as she struggles to walk on a bad day – and needs to be able to get back to her car quickly. She should also then be able to get a free bus pass, and a Carers Card, which allows you to take someone into a cinema, theatre, and many other entertainment places for free.
The older lady tells me I should run a session for people about all this practical help! I don’t know about that, but I may try and write a quick check list for people over the weekend.
Some of them seem to also be on a very low rate of DLA, when they should be higher. The difficulty is that by asking for them to look at you again – they can come back and take it all away. So the stress of that risk would put most people off, as you can imagine.
I wake up Friday morning, unable to move my right arm at all. The muscle is totally in spasm and locked. I spend half an hour unlocking my elbow, which is ridiculously painful. I can put up with most things silently, but it’s one of those that makes me want to scream but I can’t! I get it in a bent position, but it remains in spasm. I’m so shattered, and for the first time we don’t start until 9.30, so I decide to sleep in until 8.30 and skip breakfast.
We had agreed to give the birthday girl her gifts over breakfast, so I have to give her presents to someone else to give her while I sleep. I feel bad, but it makes me feel so much better. After getting ready, I see the birthday girl who says she loved her gifts. I’m so pleased, as it’s not nice waking up in hospital on your birthday, even if it is her last day.
Our session is all about reflecting over the week. We each have to say something we’ve learned that we will carry out over the weekend. A couple of people say it’s already been life changing. I want to say that, but I can’t yet. My pain and exhaustion are worse, even though I understand why they have to be. I’ve picked up a few tips from the sessions, but the main sessions start next week.
My grandad and dad are already asking me if I’m better now. The trouble is this isn’t a cure – it’s a genetic condition that I was born with. You can’t turn that around in a week. What I want to get from the programme is how to learn how to exercise without putting myself into bed afterwards or making the muscle pain worse. I also want to build up my sitting tolerance so I can go back to work. Get some strength into my shoulders, core and lower back. I don’t expect to be cured, just hope to improve.
A man on the other ward keeps giving me pep talks. Telling me I need to be positive, and that I have my whole life ahead of me. It has crosses over to annoying and patronising multiple times. I am trying to give the programme my all, while still being realistic. It then makes me feel like I’m being negative. He tells me a story about a family member with MS. She could walk short distances, but chose to always use a wheelchair and generally felt sorry for herself (as he put it.) He kept telling her she should walk when she could, even a little a day, as those who couldn’t walk at all would resent even that little bit of mobility. She kept refusing, so he picked her up out of her chair and kicked it away. She dropped to the floor and crawled back towards the chair, only for him to kick it further away. She finally reached it, sobbing and climbed back in. He told her she needed to walk, and she said she would, but he should never do that again. She however remained in her wheelchair, and within a few months lost her all of her ability to walk.
I really wasn’t sure what to make of this story.
So in the session, instead of getting into the life changing territory, I talk about posture, and wanting to carry on my stretches and things at home.
The takeaway lover is once again is incredibly negative, a theme throughout all our sessions. First of all his target for the weekend is sitting in a neutral sitting position for an hour. It’s totally unrealistic. You can’t go from having to sit one way due to pain, to jumping to an hour. My target is thirty seconds. It still hurts to sit that way for thirty seconds, as I have sat in a certain way to compensate for many years, but it’s much easier to aim for, and easier to build up slowly.
He’d been told by his physio his walking stick is too short for him, and he was given another one that enabled them to slowly build up the notches. It’s brand new, and has a smell of plastic. It’s been pretty much his only topic of conversation for two days – the fact it smells weird, and the handle is uncomfortable. People have suggested wrapping something round it, even getting a new stick with a derby handle – which are much more comfortable than straight ones. But he does nothing about it, and continues complaining instead. He also complains about the fact it’s a three week programme, because he normally does he shopping and clothes wash during the week. He said it would be much more convenient to him if it ran for a week, had a week off, ran for a week, etc.
The lady running the session said she felt a week away was too much, people would begin to forget what they learned, and a weekend is enough to get an idea of where help is still needed, without getting out of the rhythm. He disagrees, as it massively puts him out having to shop at the weekend.
Straight after I am meant to have arts and crafts. I can still barely move my right arm, and while the session says it’s about arts and crafts, it’s actually about posture while doing it. It’s the first time I’ve ever felt like I just didn’t want to go – for a start, I couldn’t see painting with an arm I couldn’t lift up much fun. I’m drained after the week, and while sessions are mandatory, which I completely understand, this isn’t a normal group session or one with my physiotherapist, it’s one I had opted in to. So I went to a nurse and asked her to give them a call. The nurse wasn’t impressed, saying I would be in trouble. The arts and craft lady said it was fine, and I saw her later when she bought down a piece of equipment my occupational therapist had recommended, and she just said she would see me the next week. I still felt bad.
Glass painting Credit: Sumi
That would have been my final session, so I slowly began to pack with my left arm while waiting for my mum to come and pick me up.
This week went really well in terms of the patients on the ward. There were the three shoulder patient who were all lovely. Two of them finished that day, and I will miss them both. They were very easy to talk to, and calming presences on the ward against some of the other stronger personalities.
While driving home I was telling my mum about the take-away saga from the night before, explaining how I’d paid for the pizzas on my card, and then they’d come and… oh my god! We gave them the cash again. I was standing right there, and just didn’t bloody well think! That £60 was all my money. We pull into a service station and I call Dominoes, but the manager isn’t there.
I sleep the rest of the way home, find my way to the sofa, and fall asleep again! I get a call from them to say they will look into and ask head office to refund me. Let’s hope so!
It’s lovely being home – I love the fact I can wake up without bright lights shining in my eyes, and the breakfast lady wheeling her cart in shouting “wake up Suzy” in the most out-of-tune way you can imagine. I love having my painkillers when I need them. No hospital food! And sweet cuddles from my cat, who I missed a lot. I even don’t mind when he kneads me on my face at 5.30am as he decides he wants breakfast.