| Day One |
I had a very early start and didn’t sleep well. I Skyped my best friends and boyfriend last night for some last minute encouragement. My bags were brought in from the car by one of the nurses so I didn’t have to struggle and I was shown to my bed. My weight, height, blood pressure and temperature were taken and then I unpacked. A few of the other patients were on their second and third weeks so they answered any questions I had. Myself and fellow newbies attended a Welcome Meeting, we introduced ourselves and received our timetables. I didn’t really feel nervous, I was more curious of the programme. Thankfully, there was quite a few free hours in my timetable for down time/resting – I knew I’d need it. Finally, I met my physiotherapist (PT), Jason and occupational therapist (OT), Sally. We discussed my goals and areas I think I may need help with. I wasn’t given any exercises – that’s tomorrow. I need sleep.
| Day Two |
I feel like I had about three minutes sleep last night; I think the combination of over-tiredness and a new environment didn’t help. I wore earplugs so the noise wasn’t a problem, I just couldn’t sleep. I was up and in about at 6:30 am, yes, 6:30 – IN THE MORNING! There’s usually only one 6:30 I see during the day and it certainly isn’t that one. I had jam on toast for breakfast and waited to be portered up to the gym in an electric wheelchair for 9 am. The hospital is very hilly so the patients are always portered in power-chairs, and they’re super comfortable. ‘Your Move’ takes place Tuesday-Friday and consists of various stretching, I did mine sat down, it’s nothing too strenuous but wakes the muscles up for the day.
I then met Jason in the physio department and we established what I wanted to work on first – I chose my back and knees. Jason had me doing various exercises to establish what I would benefit from. My core is very weak, as are my knees and hips so we did a few exercises on the bed and then on a gym ball. Get this – my ankles are really strong; I’d have never said that as I am constantly going over on them. However, I’m twisting ankles due to the lack of stability in my knees and hips – who know? Well, Jason knew, but you know what I mean. I’m terrible sat on a gym ball, my balance is so shocking.
Then I had a relaxation one-to-one which was extremely beneficial as I can hardly ever relax. I lay on a bed in a dark room with soothing muscles and clenched my muscles and then released. I really enjoyed it as it showed how much tension I am holding on a daily basis and how good it feels to let it go.
After lunch, I went back up to the physio dept to meet my OT. We discussed various ways in which I needed assistance at home and during leisure. I talked about how I’m rubbish at pacing and if I want to clean the bathroom, I’ll do it all and end up in agony, instead of doing little bits at a time. I’m really conscious of this now and Sally suggested I use the Spoon Theory, so I’ll be putting that into practice.
I went back to the ward, had a chat with the lovely girls on the ward, showered and read before bed.
| Day Three |
Shock, horror, I didn’t sleep again and was awake at 6 am. My heart was beating out of my chest as my PoTS was playing up and my back really hurt. ‘Your Move’ consisted of an amazing Tai Chi class that was so relaxing I missed some moves because I was almost asleep. I hope we get to do that again.
Afterwards I met with my PT, he said he noticed an improvement since the previous day and so did I, it felt really good. He gave me more exercises with the gym ball to strengthen my muscles in my thighs and hips. I didn’t fall off the ball this time, I certainly lost my balance but I closed my eyes and concentrated, willing myself to get through it. Jason told me that I had to pace my therapy and if anything was hurting I must tell him immediately as he didn’t want to hinder my progress. OT was great too, I’m thinking about how I can alter tasks to make them more manageable, whether they be breaking them down or asking for help. I’m going to use the Red, Amber, Green, technique and put my tasks into those categories.
Red – Challenging/Demanding
Amber – Tolerable
Green – Easy
The afternoon was so much fun, we had sport. When I first saw that sport was on the timetable, I’ll be honest, I wasn’t impressed but after being in the sports hall for ten minutes it was awesome. I played badminton with my ward bestie and we were really going for it but laughing the whole time. I used one crutch and a grabbed to pick the shuttlecock off the ground. We sat down a few times and then played table tennis. I was on a perching stool and will certainly be joining the Olympic team, as I’m a little bit awesome. I forgot to pace and thought because I was sitting, I would be okay…Boy, was I wrong.
I had a really bad evening, my parents came to visit, bringing my duvet and goodies but I was in so much pain. After they left I had a severe hemifacial spasm and ended up crying as it was really hurting my jaw. My ward buds all came and sat and comforted me. They’re all so lovely. I took some pretty strong painkillers and went to bed.
| Day Four |
I SLEPT! Can I get a ‘woop woop’? I had quite a broken sleep but I slept and it felt good. After the stretching in ‘Your Move’, we had a talk on Postural Management. I found it particularly useful as I suffer with very bad back and shoulder problems, especially when sitting for too long. We tried out various cushions and lumbar supports and now I totally need to win the lottery so I can buy all these comfy things.
After lunch, everyone went swimming, except me. I don’t regulate my temperature well and the heat really sets off my PoTS. I tried watching from the viewing platform but it was absolutely scorching and I had to leave straight away.
I set my weekend goals with my PT and OT, and told them how much I was enjoying the programme and how I felt that I was really learning.
1. Complete physio
2. Keep up ‘Your Move’
3. Communicate with boyfriend on helping around the house
4. Plan weekend using Red, Amber, Green
5. Use relaxation techniques
6. Find baselines for Sitting, Standing, Walking
That evening I went out for a meal with my parents and two of my ward friends joined us. We had the most hilarious night and the food was marvellous. I really enjoyed myself. My shoulder and back were really sore and when I got back to the ward, my face went into spasm again – my lovely friend sat with me whilst I calmed down. I’ve really made some awesome friends already. I fell asleep reading.
| Day Five |
I slept even better last night, my alarm woke me up at 7 am, it was still quite broken but I dropped off much quicker than the previous nights – can I get a round of applause? We partook in group relaxation and stretching in the conservatory then had a group discussion about Sleeping Habits. We discussed ways in which sleep is affected, what is good and what is bad.
My parents then showed up and helped me pack as weekends are HOME TIME! I took all my washing and valuables but left my non-essentials in my locker. To be honest, I wouldn’t have minded staying as I’ve been having such a good time, it doesn’t feel like being in hospital.
I was so glad to see my boyfriend when I got home, I’d missed him insane amounts. Get this, I paced showering and washing my hair. I was so thrilled with myself as usually I do it all in one go and knacker myself out but I broke it up and had rests and I feel good. I can’t wait to tell my PT and OT on Monday.