I have spent a few days at my sister’s house, hanging out with family. Especially enjoying the bubbly company of my nieces and nephew. My 12-year-old niece performed in the British Theatre Academy performance of Annie on Monday and it was a wonderful. A breath of fresh air, so many of positive young people taking part, quite different to the hooded, rude and violent youth the media try to portray young people as. It’s exciting to wonder where all these opportunities and their hard work will take them.
During my three-day visit I ignored the fact I couldn’t walk the short distance to and from their house and the park and that I had to be driven by my dad. I ignored the fact that I couldn’t sleep well because of pain in my leg, my hip, my arse and well most of my bloody left side. I tried hard to ignore the headache caused by neck because my left side tight and in spasm and never responds greatly to sleeping in a different bed. I ignored the fatigue in the day and the constant popping of pain killers to be able to join in the most simple of day-to-day tasks. I ignored all that and I even stuck to my plan I set myself last week to get back on track after pneumonia and I had a lovely time just being with my family grateful that I had not had to cancel my visit, and that my dad driving had made it possible.
Now I am back at home with. Back to an array of appointment and hospital letters and hard work. and despite the beautifully sunny day, I cant help but wonder where this is all taking me. Should I really continue to expect so much of a body that clearly is not up to the job, is it my expectations that make it harder than it has to be
So here we go My medical to do list from the immediate future:
- Hydro – x1 weekly to strengthen and increase movement and mobility in left leg (fingers and toes crossed)
- Physio – x1 daily to do the same as hydro just on dry land and aim to get promoted from the hydro pool at the Royal Orthopedic to the physio gym.
- Walking – try to increase walking on 2 crutches – try to get on to 1 crutch for very short distances – and at some point hopefully decrease pain levels and keep positive that the outcome of this hip op in the long-term will turn out to make things better and not fall into the 10% where it makes no improvement or the 10% it makes pain and mobility worse.
- Increase pain killers to be able to all the above, but at some point decrease them again.
- For my squatting heart Clots and thick blood – keeping upping anti-coagulant drugs to get my INR levels between 2 and 3 (despite failing to do this for last 8 weeks and today was miserable level of 1.3) Fingers crossed the clots squatting on my patchwork heart valve will then fuck off and my heart can get back to working better.
- Get more Heart information – by wearing a heart trace monitor heart from Monday for a week, not quite sure why but I guess they are just being further.
- Have a bone density scan and appointment with bone consultant – to see if my bone density has recovered from the damage of taking the Prostap injections, that I used to have to manage my Endometriosis in previous years.
- Visit the dentist hospital as gum disease is rapidly deteriorating – despite doing everything the dentist instructs. Begging the question why is it getting worse and as I watch the gap between my front teeth grow, will I someday watch my teeth fall out and be in need of a nice pair of dentures?
- Not forget to aim to get back to some normality of a sex life. As all the above has meant that our first six months of marriage hasn’t exactly been very sexy. Thank my husband again for being the most amazing person on the planet.
- Have autoimmune test to see if there is something else I need to worry about, as was suggested when they found I had pneumonia and pleurisy last month.
- and lets not forget all the shit everyone is meant to do to stay healthy, diet, sleep water, stress management etc etc etc.
All of that is taking place on top of my day-to-day stroke fatigue and central stroke pain. All new medications are on top of my normal collection of stroke meds and pain meds, spasm meds and bone meds.
Don’t get me wrong I am merely listing the facts, i am not moaning or feeling negative. in fact I am positive, I am motivated and I am working really hard, in all sorts of direction, doing my bit to get back to being as well I can be within my circle of shit. And trust me I am bloody beyond over the moon to be off the antibiotics and pneumonia free.
But if I am really honest with myself, for the first time since my strokes changed my whole life in 2004, I am really reviewing my situation. I am not sure that I will ever be able to just take pain meds, dig deep and slog on anymore, or if I want to anymore, I am tired of trying to be just differently able. I always wanted to strive for normality until at least 50 but the last three months are really making me think, is there other ways of living? do I really have to do it this way?. And at this moment in time, I do not have the answer to these questions. But its the first time, in a very long time I am really looking for one.
(I might not be a criminal but its definitely time to think it out again don’t you think?.)