changes and stagnation

It seems fitting that I did not write anything last year on this blog. I thought about it and I tried. Several times. Words just simply did not come in big enough chunks to justify bothering anyone’s email clutter as I saw it. The world last year was strange. In many cases, people with disabilities saw a leveling of society as abled people saw parts of the world through our eyes. We still remained very much plumb bottom of the food chain though and now that there is light at the end of the pandemic tunnel in some areas the gap is widening once more. It seems a fitting time to try and come back to this place and find what I want it to be. If anything at all.

I had to fight to be furloughed last year because neither Scotland nor the UK considered type one diabetes to be a high risk health factor and I work in a retail chain that sells food. My asthma just missed the cutoff too. Apparently I am not roided up enough. I knew my immune system or lack-thereof though. And I knew my work. And I knew my customers. So I fought. I am pretty sure I actually had covid-19 early last March when the symptom list was short and the information list even shorter. There were no tests yet. I was just to sit in my room for two weeks as my dog yowled from outside and hope I did not die.

It took a lot of arguments with higherups before I got that furlough and when I was sent back to work it was not because a health professional decided. My work just did. It was all rather shambolic. The Scottish NHS has done a wonderful job in dealing with the pandemic but as with every other health service it means it is now chronically behind. My contraceptive implant is now years out of date. Years. Thankfully it is somehow still holding off actual menstrual cycles but the agony of endometriosis is back to being a near constant companion in my day to day life. Nights are spent in pain in the bathroom and days groaning as I twist in my duvet covers. My mental health is shocking. I am pleased to report that on that front though I have finally begun working with a psychiatrist who specialises in the impact diabetes can have on mental health. The wait to be seen means I am in a worst state than ever and have had past issues with alcohol to contend with. But I am confident that now my care is more specialised, and I am seeing actual physiatrists rather than lower levels of the system, that this might actually work. Spending a lot of time wrapped up around my working from home mum just was not a great place to be.

My diabetes is getting worse with old age. It becomes ever more volatile and disruptive. I have tried working with different HCP but most of the time it boils down to the same problems with me. I have been diabetic so long that they assume I know best and I do. Kinda. I will predict how things will react best but that does not mean that I do not need help and many HCP have a set bag of tricks. What happens when their bag is empty and there is still no answer for me? And it is very hard, especially when mentally down, not to get frustrated at the same questions. Have you tried this or this? Yes. I have been at this a long time. Did it not work? Obviously not or I would not be here. It is not their fault or mine. It is just the circumstances I find myself in.

What does not help is that a possible answer is sitting there. We, the NHS and I, just cannot get the funding for it. The upgrade to my mum has a CGM system that would react far quicker than I ever could and halt so many of these hypos and hypers in their tracks. Libre can alarm all that it likes but by the time it has and I take on the glucose and the carbs and change the basal it is often too late. The lack of communication between the libre and my pump means there is still reliance on my brain doing a lot of sensitive maths. And that is before anyone factors in ‘doing X activity under Y levels of stress in Z degrees’. The next generation of care is here but it cannot be accessed. What irks me is that it is a funding issue and comes down to bureaucracy. The CGM would not cost much more than the libre does. I already have the funding for the pump. But my GP funds the libre. The hospital funds the pump ect. I am the patient and the individual but because of this will now surely cost the NHS more long-term treating my diabetes because of this money game. Readers, this is why I have not written in a while. I seem to just come, complain and vanish again. But perhaps that is what I need to do more. Have an outlet even if it is just talking into the dark.

Sometimes it feels like you have to be on your hands and knees with blooded finger nails trailing drips behind you before someone will tick a box and say ‘yes the situation is bad enough, you may now have this thing’. I do not have the spoons to do anything about that right now but maybe one day I will. Then everyone is in trouble.

One thought on “changes and stagnation

  1. angelinebadams says:

    It seems like if they were able to treat the budget for you as all one thing, rather than a pot held by your GP and another pot held by the hospital it would make a difference… I suppose the system has evolved the way it has For Reasons but it’s maddening that nobody is able to sign off on the thing you really need.

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