Watching Holby City last night really reminded me of how far I have come. This time last year I was experiencing what Nurse Maria was going through. The gruelling daily physio. To move or tilt my head was the hardest thing to ever do. I did and continue to do all the daily exercise strengthening up my upper body with 1kg weights (which are an absolute ton to me).
Learning to walk again was the hardest thing I have ever done in my life and it worried me greatly as to whether I would walk again? It just seemed a real impossibility, especially as a hoist was used often to elevate me out of bed and into my chair. This then progessed to V- beuing used.
Although I really appreciated the help of the physio team I would sometimes dread having a programme where I'd need to tryand get up despite just finally getting comfy and tolerating the loud sounds around me. There would be a daily fiight for a decent chair and stool. It made a huge difference to your posture and how much I could tolerate sitting in s chair for more than 10 minutes (still the case).
There are some perplexing questions surrounding the increase in pain that I am experiencing but hopefully with targeted support and consistent fighting, I will get somewhere. The ultrasound of my liver showed that things are ok in terms of there being no change in the tumours from the PTLD so thats great!
I am sooo looking forward to a nice candlelit bath tonight...total chillout and blissful vibes. I have been experiencing quite a lot of tension and stress which isn't suprising after a lovely holiday ending with super stress which led most probably to being admitted to hospital and then @ home now without care support temporarily (long story and quite dull). But but but!! I do have a lot of help from my lovely mummy and darling friends so thank you all for helping me out!
I am feeling tension in my neck and chest area. I've been following my Kim and Aggie regime as much as possible but I just do the very minimal light duties if I can. Like a denture tablet in the loo (meant to work wonders...I'll check in a mo and let you all know). I do try and avoid the use of chemicals as much as possible for obvious reasons with limited breathing and also I am becoming more and more of an eco-warrior! I fancy dressing up as an eco superherione (and no..I haven'e lost it!). I just think its so important to preserve what we can for the next generation and thereafter. It can be so easy and just become implicit dailt behaviour like switiching off lights, re-using envelopes, using cotton bags at supermarket, car sharing, using sites like freecycle...
Right, I feel bit sad this week as I haven't been out and about taking photographs which is part of my pledge to myself to spend at least a couple hours a week snapping away...best way I reckon to practice and I did a lot more than that on holiday in Cyprus...think mum was getting bored of me taking 30 snaps of the same thing bless her!
I did say I would 'juush up' this blog but became overwhelmed with catching up with correspondence and errands from being away for a week!
Just a few things to end this post that I and LLTGL would appreciate your support with:
- keep talking about organ donation whenever you can
- the savejess campaign is really rocking...look out in the press, The Daily Mirror, Metro tomorrow will highlight the save-jesstival this Fri...you can still have time to get tickets
- Holly ( a fellow LLTGL advocate) has organised a sponsored abseil and we would all love your support no matter how small (think minimum £2 ) please click here and skip that latte and help perhaps to save a life. Thank you everyone!
Learning to walk again was the hardest thing I have ever done in my life and it worried me greatly as to whether I would walk again? It just seemed a real impossibility, especially as a hoist was used often to elevate me out of bed and into my chair. This then progessed to V- beuing used.
Although I really appreciated the help of the physio team I would sometimes dread having a programme where I'd need to tryand get up despite just finally getting comfy and tolerating the loud sounds around me. There would be a daily fiight for a decent chair and stool. It made a huge difference to your posture and how much I could tolerate sitting in s chair for more than 10 minutes (still the case).
There are some perplexing questions surrounding the increase in pain that I am experiencing but hopefully with targeted support and consistent fighting, I will get somewhere. The ultrasound of my liver showed that things are ok in terms of there being no change in the tumours from the PTLD so thats great!
I am sooo looking forward to a nice candlelit bath tonight...total chillout and blissful vibes. I have been experiencing quite a lot of tension and stress which isn't suprising after a lovely holiday ending with super stress which led most probably to being admitted to hospital and then @ home now without care support temporarily (long story and quite dull). But but but!! I do have a lot of help from my lovely mummy and darling friends so thank you all for helping me out!
I am feeling tension in my neck and chest area. I've been following my Kim and Aggie regime as much as possible but I just do the very minimal light duties if I can. Like a denture tablet in the loo (meant to work wonders...I'll check in a mo and let you all know). I do try and avoid the use of chemicals as much as possible for obvious reasons with limited breathing and also I am becoming more and more of an eco-warrior! I fancy dressing up as an eco superherione (and no..I haven'e lost it!). I just think its so important to preserve what we can for the next generation and thereafter. It can be so easy and just become implicit dailt behaviour like switiching off lights, re-using envelopes, using cotton bags at supermarket, car sharing, using sites like freecycle...
Right, I feel bit sad this week as I haven't been out and about taking photographs which is part of my pledge to myself to spend at least a couple hours a week snapping away...best way I reckon to practice and I did a lot more than that on holiday in Cyprus...think mum was getting bored of me taking 30 snaps of the same thing bless her!
I did say I would 'juush up' this blog but became overwhelmed with catching up with correspondence and errands from being away for a week!
Just a few things to end this post that I and LLTGL would appreciate your support with: