The ache in my chest and back is relieved somewhat once I lie down in bed and let the soft duvet wrap around me all snuggled and safe. That total break away from raising, lifting even though I minimise these exertions as much as I can, still continue to cause me much pain and distress, But you know, when I see the sunshine beaming through my curtains, I feel nothing but joy and thankfulness. I almost rev my body in gear and use my bed raiser to slowly prepare for lift off!! By now I am totally out of breath and so I allow time to gain control before sliding to the edge of the bed and use my arms behind me to elevate upwards. Then I feel completely dizzy and light headed which is when I will try and take a step to test myself out and bump into something (hence the many bruises I bear in some unusual places).
I do choose to forget the many difficulties I encounter daily. The crash boom of reality of how my medical condition impignes on my daily life becomes apparent when I am poorly or highly stressed. It all becomes clear just how much I do, how much energy is used to achieve often the most minimal action that is often taken for granted. The knowledge that those great efforts just over two years ago nade no difference and enabled no action whatsoever is a stark reminder that I am very lucky that I can do mote things today, even though still difficult, I can see an eventual result.
Admittedly I try to keep up with my peers and do push myself sometimes too far. I realise that I need to try and allow others to help me where and when possible so that I can do more. I have decided that things like going to the post office can be an eliminated task by checking with friends and family that are making a visit and may not mind helping me with my post as well as using online post office services, courier services. Grocery shopping done online with the occasional top up shop which I can ask for help with. I do strive to be independent but some of my tasks can be simplified massively. Just the post office and grocery shop= minus two days. A day to do it and a day to recover. Crazy!
My hospital appointments need a major overhaul so that they sync together better. I am so thankful for the specialist care that I receive but sometimes I worry that test results are somewhat skewed because I have done a 12 mile round trip over 3 consecutive days to the same hospital to see different departments and clinics. I seriously am drained by day 2 and I am being exposed to high risk infection environment three times over?!?!? It just seems bonkers to me but apart from alerting management about the issue what can really be done?
At least some serious sewing gets done and other to do bits from my hospital bag, so time is never wasted!! Lol!
Oh by the way I did pass my BSL Level 1 sign language. Yay! I am chuffed especially as it was a fast track 10 week course which is usually 1 year! It would have been so handy to have as a skill when i was in ICU with my trachestomy going in and out all the time. Rather than using the spelling grid to compose sentences I could have signed away. With practce everyday I hope to retain the knowledge for as long as I am able. Perhaps one day I will progress to level 2 and work within the deaf community as a volunteer. I will have the opportunity to use it at work with customers and clients so thats good too!
Time is approaching for my tacrolimus and I think I may need some paracetamol as I feel very achy and senstivie to touch. I will note it down in my red medical book so as to monitor whats happening. I think duvet time is drawing near!!