My body v Me

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.



4 thoughts on “My body v Me

  1. Elaine Stammers

    As I have said before, I am in awe of you, and what you DO achieve, considering all that you are coping with. So yes, I am with what Sue says above about the quality of your writing. Also I did not know about your eyes, but as I know what floaters are like, to have them and do your brilliant photography, then that is fantastic anyway (without any considerations) but to do that with that kind of disability (and the rest….) is quite amazing. You should indeed be really proud of yourself.

    However, that’s not much comfort on the days when you are trying to deal with all that you have to deal with, and most of all I wish you a speedy menopause to at least lighten your load.

    I was intrigued about the idea of having a vitrectomy to cure floaters so I looked this up and see that indeed it is done sometimes for this reason. I have actually had 3 vitrectomies, though not for this reason – had macular hole in left eye followed some 8 years on with a detached retina with macula off, and another one some 18 months later after I fell downstairs and triggered off another RD (it seems that there was still some of the vitreous left and it was very sticky). I have been very lucky and left with good sight, but yes, there is always risk with such an op, and I have now got high pressure in that eye, and my pupil doesn’t close properly to the light. I was surprised to see that the NHS do in fact do this op for floaters, as you probably knew, otherwise you would not have bothered to go for that appointment. I can understand the extra risk factors re detachment due to the EDS but I wonder if you sought a 2nd opinion at some point if they would see that you were determined. I am quite sure they send people away unless they really push for it. There is info online about the NHS and the fact that they do sometimes do this operation to show them that you know it is done.

    On the not so good side, would you not have to do an vitrectomy in both eyes to get rid of the floaters, and would you not have problems with the anaesthetic? I had my last op done with a local anaesthetic, and suffered severe anxiety as a result unfortunately as I was so scared, but I know some people cope with such ops better than I do. I am surprised that the NHS does not invest in a machine which I gather can get rid of floaters (an updated version of the YAG laser that they do have) as at the moment it seems it’s only available privately in London for around £2,000 per eye!


    1. Jak Post author

      Thanks Elaine, it’s was interesting to read about your experience with vitrectomy. The Consultant told me it was a “huge operation” which isn’t true! As you say, it can be done under local anaesthetic and that’s how I’d have to have it as I can’t have a general.

      Re the laser, I don’t think it would help in the long run. It breaks the floaters up but they’re still in your vitreous and eventually clump back together again if very sticky, as mine obviously are 😦

      I’ve been to the 2 leading hospitals in the north of England and got no joy from either, so it looks like I’ll just have to put up and shut up :-/

      Jak x



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