Weekly roundup

I’ve felt a little bit brighter this week and have managed three good nights sleep for which I am eternally grateful, but I’m still not able to physically do much due to my stupid back pain and am still more exhausted than usual.  The mast cell reactions I was having after meals also seem to have settled a bit which is a humongous relief, though I have woken this morning with my nose streaming which I’m assuming is hayfever being as though the Birch pollen season is now under way.

When you have complex medical conditions it’s virtually impossible to pinpoint what’s causing what.  My mast cells are currently over-reactive as I’m allergic to Birch pollen and I know my back is always more painful when my mast cells are having a hissy fit.  I’m also hugely peri-menopausal and my hormones are up and down like a Bridge’s nightie.  In animal studies, histamine has been found to be amplified by oestrogen so it’s no surprise that my mast cells are currently playing up.  Of course, I could also be having completely unrelated back problems due to my hEDS, who the hell knows?!

I must have been ovulating on Wednesday because my uterine pain was back with a vengeance and I spent most of the day unable to stand up straight, however it only lasted 24 hours and I was determined to go to Camera Club in the evening as it was our last digital image competition of the year.  I’m glad I did because my photos were placed a respectable 3rd and 2nd and my scores were enough to ensure I won the league so I’m now on course to receive two trophies at our annual dinner next month 🙂  In particular the judge loved my #metoo selfie, which made me happy because I love it too and the message the #metoo campaign promotes – it’s way past time for the silence relating to the sexual harassment and abuse of women to end.

My replacement plexi-glass also arrived so poor Bertie was drafted in as my model while I experiemented with taking fake rainy window photos.  He’ll do anything for dog biscuits 😀

Thursday I had some devastating news.  As regular readers will know I am battling my insurance company to extend my PHI (income protection) policy from 60 to the new retirement age of 65.  I’ve taken my case to the Financia Ombudsman who decided against me this week.  So I now have five days to put together an appeal.  Do I need this stress in my life when I already feel like shit?  No I do not.  There are times I think that Someone Up There hates me.

As I have been in so much pain recently I haven’t been able to do any cooking and my freezeer resembled Old Mother Hubbard’s very bare cupboard, so I bit the bullet on Friday morning and made several meals and smoothies.  Of course, that set my back pain off again and I’m lucky if I got three hours sleep that night.  FFS.

Some good news on the health front for a change.  I have severe GERD and was keeping it at bay with Famotidine (an H2 antihistamine) until January when my mast cells suddenly decided they’d had quite enough of those and rebelled.  I’d already become allergic to all the other H2 antihistamines on the market and my immune system doesn’t like PPIs either, so the only thing left to take was some Gavison liquid and pop Rennies like they were Smarties.  Needless to say I was in reflux hell for weeks at the start of the year and had an awful cough as the acid rose up into my lungs.  However, the good news is it’s settled down a bit!  I’ve started having my main meal at lunchtime and just a small snack at night and although I do still have reflux the cough has largely gone and the pain is bearable.  Yayyyyyy!  It does always get worse the week before my period, as progesterone makes connective tissue even more floppy than usual and the sphincter which holds my stomach contents in place doesn’t do its job properly, but I’m hoping once the menopause is over that might improve.  Watch this space.

The daughter of a friend who walks my dog is very bendy.  She’s now 13 and has started having mild back, knee and foot pain.  My friend knows all about my hEDS and we both agree her daughter is hypermobile, so she bit the bullet and rang her GP about it this week.  She was dreading it, knowing the battle I had to get diagnosed and the fact that my Doctor had never heard of the condition, so imagine both our surprise when before she even said what she thought the issue was her GP said “I think your daughter has hypermobility syndrome.  It’s not something I know much about, so I’m going to refer you to the muscular-skeletal specialist here at the health centre”.  Hurahhhh!  That the message about hypermobility is finally trickling through is brilliant and that this young girl will get the help she needs at an early age is fabulous.

It’s Easter Sunday today and my parents and I are going out for lunch.  It’ll be nice to have someone else do the cooking for a change and to not have to wash up afterwards!



2 thoughts on “Weekly roundup

  1. Sarah

    Evening Jak. Just wondering, and you’ve probably already said (mind is like a sieve atm) your stomach problems…do you feel thoroughly exhausted when you eat to the point you just don’t want to eat, but then you are really hungry so don’t know what the balance is between eating enough to get rid of the hunger and eating too much so you feel exhausted
    Also, I was wondering if you knew much about this term hypermobility spectrum disorder and whether it’s recognised in the UK
    With regards to your insurance, have you argued the gender discrimination issue, as surely they would have paid out to the age of 65 for a man


    1. Jak Post author

      Hi Sarah

      Thanks for the questions. I luckily don’t feel exhausted after I eat. I mean, I feel exhausted all the time but eating doesn’t make it any worse.

      Hypermobility Spectrum Disorder is a new term for what used to be called Hypermobility Syndrome. It’s basically all the bendy people who don’t fulfil the new, strict criteria for Hypermobile Ehlers-Danlos Syndrome. It is recognized in the UK, in fact our charities were involved in the working group which agreed the new criteria last year.

      Re the gender issue with my insurance: this is at the heart of the issue. Unfortunately under UK law existing insurance policies are exampet from Equality Law, a situation I find appalling! Therefore I’m having to try and win my case based on a loophole.

      Jak x



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