Got some new goodies this week!
It’s sad when you get excited about a new pill holder, but there you are! I really like the colours, and the amount of boxes there are to split things up. Sometimes I find I don’t take things as often as I could, which then increases pain levels. So having it set out like this will show me if I still have more to take in a day. At the moment I’ve just got paracetamol in there, but got plenty to add. You can take each day out, so you only need to carry one section around with you at a time.
Next are two items to help my neck. The base of my neck burns hot pretty much all the time, probably from inflammation. I picked up this cool pillow pad at a mobility shop, as sometimes it’s so hot I struggle to sleep. I thought this might help, particularly in summer.
Similarly this is designed for the head, but is the right width to wrap around my neck when it’s burning to try and soothe it.
I’ve had a bit of a saga to try and get some orthotics sorted. My first referral was rejected by my GP, with a note it had to come from a consultant. It took me five months to see one, then another three months to get an appointment. So, nine months in total and I’m sitting in the orthotics office, only to say I should have been sent to the hand clinic to see a specialist! Argh! Lucky it didn’t take as long this time, just two months, and I saw them last week. Luckily they had much better ideas than the huge white plastic splint the orthotics departments had suggested – which immobilised my thumb completely.
What I needed was something that allowed my thumb to bend forward, but not backwards so I could still make jewellery. And I also needed something to provide gentle support when it was painful and inflamed. The Occupational Therapist gave me two things – a thumb splint, and some Cobon tape.
The splints are pretty subtle when they’re on, and don’t look so awful as some of them. They allow the forward movement I need, but stops the joint from hyper-extending backwards. When using my jewellery pliers it will still allow me to put the pressure on the wire I need.
So they’re my new gadgets! What do you think? Anything you think I need to buy?
I wake up feeling wrecked. Despite having slept, I feel like I shouldn’t have bothered. After a breakfast of cold, hard toast, we have a Stretch session. The physio that normally leads it is off sick, so it’s led by Marta, who normally runs the Arts and Crafts. She had made a girl in the ward cry the day before. She has never led one before – she’s very hesitant and a bit patronising at times, explaining things to a ridiculous degree.
Almost straight after we have Handling and Lifting, which looks at lots of ways to manage around the house. I really begin to flag, and I get a massive attack of noise sensitivity, particularly due to some of the loud voices in the group, but it’s hard to explain to people, so I just try and concentrate on getting through. We got lots of tips to help with housework and around the house. We learnt never to bend over to pick something up, or to get something from a low cupboard, but instead to stand as if your feet are in a box, with one foot on the top right of the box, and the other foot on the bottom left. This gives you a stable base, and improves balance. When you go to bend, you should lunge forward on your front knee. This takes the pressure off your spine.
We also learnt that the spine is in the shape of a lazy s, and the most delicate part of your spine is the top. Your lower lumber area has much thicker bones/discs, and is where all your weight should be, and why you should carry objects close to this part of your body.
Straight after that I have my Occupational Therapist. She sees me looking pale and rubbish, and asks if I need to lay down. I am so grateful, and she takes me to the OT bedroom. (They have each room, a kitchen, bathroom and bedroom to show you aids and adaptations to help.) I stay there for ten minutes to try and recover, then she goes through some adaptations she thinks will help me.
I have just under an hour before lunch, and I’m really feeling rough by the time I get back to the ward. I collapse in bed and have a sleep. This helps a lot. I don’t like sleeping during the day, as it impacts on night sleeping, but at the moment which such a new routine, that’s very active, I need to do what I can to keep going.
Lunch is another salad – we’ve all agreed it’s the only safe choice on the menu! Everything else is utter crap. We have decided to have pizza night on Thursday as a treat.
I have my physio session. We work on building up strength in my shoulders, my core and improving my balance, and I enjoy it. My left shoulder is particularly weak, and we spend a lot of time trying to build it up. Weirdly, the right shoulder then spends the rest of the night hurting, which is confusing! My physio is really nice and explains everything she does, and why she’s doing it. Others don’t have quite such good relationships with their physio, but I feel it’s really important.
The exercise balls in the physiotherapy room. Apologies for the fuzziness!
My final session of the day is Sports. They lay on badminton, short tennis, table tennis and bowling. They show us how to adapt sports to our needs – so whether it’s using wheelchairs, or perching stalls. I am as terrible at table tennis as I was at school when I was okay, so I have no excuse! I do quite well on bowling. We all then start a game of catch. It sounds simple, but it was very fun, with all the trainee physio playing, and the ball going everywhere and anywhere. I can feel my shoulders burn, but hopefully it built some strength up!
Afterwards, I find a porter, as my wheelchair is flashing to say it’s out of battery. He said he would be able to charge it, but he’d need it overnight. They take it, and I have to wait about twenty minutes for a porter to take me back (which is why I really appreciate my chair!). Someone who has been using the porter every day moans she can’t be bothered to wait for him to come back, so she’ll walk back to the ward. I think it’s interesting she can suddenly walk when faced with a bit of a wait. When I get back, she’s fine, so it didn’t even seem to impact her.
I spent the rest of the evening chilling out. We watch a film, and I get some jewellery orders – even from a guy on the male ward! It’s one of the girl’s birthdays on Friday, so the ward is clubbing together to buy some jewellery bits from me, as she keeps saying she wishes she had some money to get more than the one bracelet she did buy.
Overall, I think it was a bit too much physical activity in one day, although I enjoyed it at the same time.