Things have taken me in a direction I never thought I’d have to consider. The downturn in my health has meant even more time stuck in bed and the result of that is the start of pressure sores. Thankfully they haven’t broken skin and I’m keen to keep it that way.
I was advised to contact adult social services to seek an OT assessment and management of these sores and preventing them. I’ve just spoken to a lovely lady who asked and listened to everything that’s happened these last few years with such compassion even though she couldn’t help me. She offered the little advice she was allowed to, including suggesting I complain about the doctor’s lack of action. But because I’m not signed off by neurology or neurosurgery they cannot help me, because still being on those specialists rosters implies they haven’t done all they can to turn my situation around. Though the specialists themselves will insist that they have.
Now I must contact the doctors and request a referral to the District Nurses who will assess my needs regarding pressure relieving equipment and make suggestions, whilst also caring for the sore I already have. The good news is that I don’t have to see a doctor to request this.
I’m glad the call is out of the way, and I’m glad I had someone so kind and compassionate on the end of the phone when I have to lay out all the embarrassing issues I face at just 31. The same issues that the district nurses and adult social care manage for my 82 year old Grandma. It’s not an easy conversation to have and it was an even harder self referral to make.
As expected my bloods came back and confirmed I don’t have coeliac disease and whatever reactions I’m having aren’t triggering IgE antibodies. Of course that’s just means I’m no further in finding out why I’m reacting to food at all and I can only hope that these negative results don’t mean it’ll become another issue that the doctors stop investigating or wanting to hear about.
Instead the doctor has text, asking to see me to discuss the concerns on my private results. These of course have nothing to do with my reactions, incontinence, mobility, neuropathy and all the other shit I’ve requested help with. But sure, I’ll book in to discuss the slightly high cholesterol and disappoint them when I refuse to have more medication added to already full pillbox.
But I do really hope that the nurses can help me find a solution to allow my body the rest it so desperately needs, but isn’t able to get as it’s just too painful to lie down during the day as well as at night. I did have a wonderful phone call with one of the UKCVFamily members who offered some great advice on the sort of movements that can help when I need to lie quite still and various other topics of fatigue management that she’s found helpful. So it’s not all bad, there are always people looking out for me and willing to help me!