I sit here, wondering how to write. What to write. My story feels endless, and therefore boring, I’m sure. 44 weeks, at least in pregnancy, is post-term, past due. In NHS terms, it’s how long it takes to see a specialist.
I know you all want me to be better, I want me to be better! And I am, in so many ways, thanks to your support. But I still have some ongoing – and some new – symptoms that severely affect the quality of my day-to-day life. At times I feel utterly desperate, and quite useless as there is so little I can do, for myself and for others. I glance over Facebook and the hundreds/thousands of stray animals in Bosnia needing help, help that I would normally be able to assist with, but no longer.
And I want to stop defining my life by my physical situation, and I know this is possible, even if the symptoms don’t go away. I just need help, solid, professional help.
My main issues are:
Burning feet and hands at night, waking me up constantly.
Blurred vision every few days or more, so I can’t read.
Excessive dry mouth and dry eyes.
Fatigue, of a new type, for the past 6 weeks. I am constantly exhausted. I get up, eat /shower, then I lie down for an hour or two. I get up, can manage an hour or two maximum doing a couple of things, and then I have to lie down again. By then its time for supper, and then for bed. My ‘useable’ hours are shorter than they’ve ever been other than last year when things were really bad.
My GP has done all they can and now I’ve been referred to three consultants: gastroenterology for my ‘severe pancreatic insufficiency’; a neurologist for the blurred vision and burning feet, the latter could be small fibre neuropathy and this can be progressive – moving up the body, and a rheumatologist for the dryness and exhaustion, to see if I have something called Sjogren’s Syndrome. This too can have severe complications, and needs – but rarely gets – early diagnosis.
So, I have been told it will take 44 weeks to see any of these specialists on the NHS. That the ‘normal’ wait time is in fact about a year. The NHS is broken, my GP tells me. Not comforting words.
I am getting used to physical suffering, more or less, but if there are things that can be prevented by early diagonsis, or at least actually diagnosed so I know what is going on and not spend my few available hours searching the internet or checking support groups for information, it would make a huge difference. Perhaps I could start thinking about other things than my health. Perhaps the bags under my eyes might lessen. It took me a while to have the courage finally post a photograph showing how I ‘really’ look…
I really don’t think I can’t wait 44 weeks.
So, I would like to make two private appointments – one for a neurologist, and one for a rheumatologist (my gastric symptoms are the least problematical at the moment). I am hoping if there are further investigations needed, they can refer me back to the NHS, as this often is possible.
The neurologist is Dr. Dennis Chan, I have chosen him on the recommendation of others who have seen him, but also because he is heading up a Long Covid cognitive study and as I essentially have a version of LC, this might work in my favour. I will also ask him about other neurological related symptoms I have.
His fee is £280.
The rheumatologist is Dr. Vijay Hajela, who comes *very* highly recommended by my doctor and others.
His fee is also £280.
I’m starting a new fundraiser, to try to cover some of this – the old one feels messy and not specific enough. Again, asking for help – financial help – is very difficult. I have no expectations. The tiniest amount helps. And if you have read this far, I’m deeply grateful.
Please help me shorten the 44 week time to see a neurolgist and rheumatologist
Previous blogs of mine on my physical situation:
ROCKS AND FLOWERS
The Real Story
The Unendurable, Part Two
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible
Your words and the honesty in your photograph are touching me deeply. I have the feeling, that there is nothin comforting I could say to you. But I sent you some money (paypal) and I really hope it helps.
Oh Siss, you are so extraordinarily lovely and SO generous, thank you so much, I feel your care and love and I send you mine xoxo