Self care is… writing this post just before midnight Saturday night and scheduling it to post on Sunday so I don’t need to worry about it.
Self care is… playing too many games of Pyramid Solitaire because I’m rediscovering it after a break of a few years and want to beat my high score.
Self care is… a long period reading a book
Self care is… not posting something on facebook because it would make it harder to deal with.
Self care is… saying yes to something and then changing that to “probably no” because days later the details aren’t forthcoming and are stressing me out.
Self care is… getting up at the last possible minute
Self care is… an afternoon nap.
Self care is… saying no to takeaway
Self care is… forcing myself out of the house even though it’s not nice out there because I’m getting antsy sitting inside.
Self care is… writing.
Self care is… spending an hour in my standing frame, the longest I ever have (my previous record was 50 minutes, I usually do between 20 and 30).
Title blatently stolen from one of my friends who frequently posts blogs titled “State of The [her username]” Couldn’t resist!
I’m doing better, I think.
I had a UTI or a virus or something the other week but that’s resolved. Locum GP thought virus but was happy to treat as though it was a UTI based on my history and my symptoms. I’m not sure what it was but I took a five hour nap one of the days when I was “off” so I definitely had something going on.
I’m mostly medicated. And I’m a lot more motivated. I’ve still been thinking a lot that I don’t fancy doing this or I really can’t be bothered with X but I’ve been pushing past that and doing stuff. Enjoying it too. Which means the “meh I can’t be arsed” feeling comes less.
Very very spastic at the moment. But less than a few days ago. I think I’ve noticed a trigger for that which I hadn’t picked up on before. Not one I can avoid but it’s definitely manageble. And I’ve put a spare pillow on my bed and started shoving it under my knees when I sleep if it’s really bad.
I bumped into a couple of acquaintances and had drinks with a good friend on Wednesday. Possibly I might go for a drink with one of the acquaintances too, I must facebook him and sort something out. I also went to an interesting CAB meeting and accidentally ended up in HobbyCraft. That was a good day.
I was most amused by the fact that the meeting took place on Electric Avenue in Oxford. Above the street name someone had spray painted “gonna rock down 2”
Finally, I set a new record for the standing frame on Tuesday! 50 minutes! I made my Dad take a photo of me in the standing frame holding up my iPad with the timer on it. But that’s still on my camera so I’ll have to share it another day.
“And on this banner day during the Oxfordshire Crip-Olympics 2012 the Gold medal in the standing frame event is awarded to Emma Crees.
In a breathtaking performance she wows the crowds and sets a personal best of 40 minutes standing in the frame.
A well deserved gold for the talented CPer who just a year ago was a novice in the standing frame with no expectation of ever achieving greatness.
The grin on her face when she realised just what she’d managed has to be seen to be believed. A gold medal day to never be forgotten.”
And the crowd goes wild….
>Use the standing frame everyday for a week
…has been completed!
I wanted to do this one now because having had more botox a few days before I wanted to make the most of it.
In someways using the frame everyday was easier than expected – i had wondered if it would get too painful after a few days running. And it didn’t although on one or two days it was sore when it wouldn’t usually be. At least one of those sore days was when my mum was helping me and she can’t get the straps as tight as my dad does so that’s possibly why.
Time was a bit of an issue though, working out when I could fit it in that someone else was also free. It wasn’t a big deal but it was nice on Wednesday to just decide at 5 that I would pop to the supermarket and not have to stop and go “oh yeah, no, standing at 5.45, can’t”
Achieving this goal felt really good and mum said she thinks my standing without the frame seems better. Although that said I did lose my balance when transferring on Thursday and need a little help getting in the car on the way home last night.
>…You aren’t sure that getting discharged from physio is the good thing everyone else is making it out to be.
I went back to the hospital on Wednesday and saw two physios and an orthotist. They were very pleased with the progress I’ve made with the standing frame (and so am I). I’ve been able to maintain the improved range of motion in my ankles and my feet are still looking what I consider to be wrong – they used to turn in a lot and I can’t remember a time when they didn’t. Now they are straighter (I believe my talus – one of the bones in the foot – is now in neutral position rather than rotated inwards).
I do keep looking at my feet and thinking they don’t look right. But the fact is they are right for the first time in years or maybe even ever. A friend of mine popped round on Thursday and kept commenting how good my feet and legs look now (my spasticity is better controlled and I can keep my knees bent for a few minutes now if I concentrate rather than automatically spasming and locking out straight) and saying she couldn’t stop staring at them. I was joking with her that her secret is out and that I now know she’s a leg woman and attracted to me for my legs.
Anyway, back to the physio – my posture has improved which I believe should slowly help with pain. And my legs appear stronger meaning my standing transfers are better. I still have to use my arms to do it and always will not least because I have rubbish standing balance. BUT I am now using my legs more to push myself up in conjunction with pulling with my arms rather than just grabbing hold of something and pulling myself up – which had resulted in me pulling a grab rail off the wall at least twice.
The orthotist said that I would get no benefit from splints or another type of orthotics that I’m not getting from using the standing frame. I was very pleased by that! I’m actually quite enjoying the standing.
So I’ve been discharged from physio but will see the consultant before Christmas and there should be a physio in that clinic. I am a little apprehensive about being discharged but figure it’ll be ok. The interesting thing about it is that people keep commenting “well done” or “congratulations” when I share my progress and I think it’s a weird thing to say – because I can’t see that anything big or amazing has come from this long, hard process. Then again as I sit here writing this I’m beginning to realise just what it is I’ve achieved – with the help of various physios and all the other people who have supported me. It might be me that’s benefitting and my legs which show these small improvements but I couldn’t have done it alone.