My appointment on Wednesday at Sunderland Eye Infirmary regarding my severe floaters was a complete waste of time. As there is “nothing wrong with my vision” the Consultant refused to even contemplate a vitrectomy (surgery to remove the vitreous gel in my eyes and replace it with clear fluid). What I can’t get them to understand is that although my vision per se is fine I am having to look through a curtain of big, black, blurry blobs and it’s getting harder and harder to see anything. They just regurgitate the standard “your brain will adjust” shite. Why can they not understand that I’ve put up with this for 10 years now, it’s getting worse by the day and it is physically impossible to see through the large, dense floaters I now have in both eyes?
Recognising I wasn’t having any of the ‘brain adjusting’ crap, the Consultant tried a different tactic. He explained that having hEDS means I’m already at risk of retinal detachment and sucking all the gel out of my eyes increases that risk even further and if my retina did detach it could cause permanent vision loss. This I get, though it didn’t make me any less unhappy that, as usual, nothing could be done. I’m soooooo fed up of being told nothing can be done.
Whatever issue I have, treatment impacts on my other conditions – I can’t seem to help one disease without making another disease worse. It drives me INSANE.
I have lived with truly horrendous migraines for a quarter of a century but can’t take drugs to prevent them as they cause my mast cells to kick off.
I have lived with truly horrendous endometriosis and adenomysosis pain since childhood but can’t take anything to stop my periods as the hormones cause my mast cells and my hEDS to kick off. I desperately need a hysterectomy but the mere sight of the drugs needed for major surgery would cause my mast cells to kick off so badly they’d need a restraining order.
I can’t do physio, or stretches, to keep my ligaments strong, which would help my hEDS, because it causes my M.E. to kick off.
I can’t wear braces to stabilize my joints because they cause my MCAS to kick off.
I can’t wallow in self pity and binge on my favourite foods because they cause my HIT to kick off.
I can’t take pain killers because they cause my MCAS to kick off. Neither can I do osteopathy, acupuncture, dry needling, chiropracty or any other form of complementary pain relief because it causes my MCAS to kick off. I can’t even have a relaxing, soothing massage because that causes my M.E. to kick off.
I can’t take antihistamines for my MCAS because they make my MCAS kick off (oh the irony of that little gem).
And so on, ad nauseum. It’s as if my body is determined to make me suffer and any attempt to change the status quo is met with absolute resistance. You have to admire it for its determination. Maybe I should nominate it for some kind of award, or suggest it gives a TED talk on how to succeed? It’s certainly superb at what it does – it’s just a shame its forte is knowing how to keep me in a permanent state of pain and sickness. Why couldn’t it have been world doughnut eating champion or be utterly irresistable to Hugh Jackman instead?!
So I am left, once again, to just get on with it. If just getting on with it were a skill I’d have a dozen gold medals by now.