A glimpse of positivity!

I think I’m almost getting the hang of my hormones:

Low progesterone / high oestrogen = Less pain from joints, joints feel more firm, awful skin, boils on my lady bits, bloating, really sore boobs, mood swings, horrible periods…

Low oestrogen / high progesterone = More pain from joints, joints feel loose and unstable, palpitations, dizzy feeling, intimate pain/dryness.

Now, if only I could stop them going completely haywire and get back to having some sort of cycle without needing to go on birth control. I want a baby, dammit! – I am fully aware that babies with JHS/EDS-H is a while other fiasco but I’d like to be able to have that option.


I’ve had a bit more positivity these last few days and have been more focused on helping myself. I definitely have the higher progesterone going on but not to the point that I have palpitations. That’s probably my treat for next week! Come at me, bitch.

I’ve got an hour with an osteopath followed by an hour of physio on Monday morning. This is held at the rheumatology clinic at the hospital so hopefully they will know what they are doing as they are being instructed by my consultant. I’m purposely not getting my hopes up as a lot of people find physio beneficial but people with HMS/EDS-H seem to struggle with the therapist recognising that while I can do a certain exercise today, in doing it, I leave myself physically unable to wipe my own arse tomorrow. So yes, I’ll go in with an open mind but stand my ground about not crippling myself for days as a result.

In the same vein, I have booked a 1:1 session with a Pilates teacher on Thursday. Its £45 for the hour but she comes to my house and she is a qualified physiotherapist so she’s the best person to make sure I don’t hurt myself. The bank of mum has said that if I pay for one session, she’ll pay for another one and then hopefully I’ll be able to do a block of 6 weeks at her class in town.


I got a book! “Joint Hypermobility Handbook” by Brad T. Tinkle. It gets really good reviews online and I’ll be settling down after lunch to read it – despite the fact that it’s bound horribly and is difficult to read near the spine. I think that when it comes to asking anything of my doctor, having the information in a published book is favourable to print outs from the internet. It’s annoying and it’s wrong but that’s the way it is.


We’ve got my Dad’s dog visiting this weekend because he and his wife simultaneously derped and no one booked the dog into the kennel on Saturday night for while they are away at a concert in Inverness – oops. Normally my brother would go and dog-sit but he’s visiting Mum in South Africa and my sissy has a wedding out of town (I have tried to explain to her how much vodka there is at a Russian wedding…) Dad asked if I could go to his house and dog-sit – I don’t think he will ever really understand my daily struggle. No. I can’t go and stay in your massive house with stairs. At Christmas when he made a comment about me “milking it” when J helped me out of the seat it sort of clarified in my mind that Dad will never take my condition seriously or really believe my pain. So, his crazy retriever is coming here for a sleep over tomorrow night! I guess it is my turn.

Time to dog-proof the flat…

Ren x


2 thoughts on “A glimpse of positivity!

  1. bowermanland says:

    Is it wrong that I found it amusing that the books is written by ‘Brad T. Tinkle’? With tight bound books you may just have to break the spine to read it – niche medical books are frequently bound that way because they are made by small publishing houses and small printers. Let me know what you think of the book – my Mum bought me loads of these things, but I never read them: if I began reading them I would get so upset or angry I couldn’t go on, or I was physically and mentally too unstable to read them. But then again, I had a specialist who told me to find a job where I could take a nap in the afternoon – you know, ‘cos employers be so understanding. I think things have changed for the better for EDS people since I was young. It’s a good thing.

    Liked by 2 people

    1. brokendownbody says:

      Gah ha ha. If you find a job like that, let me know! His website is funny, he acknowledges that he should have been a urologist. I’ve been reading it for a couple of hours while thinking “ow ow ow ow ow ow ow” as my right knee is being a jerk. It’s not exactly stuff that you can’t find online but it’s in a book and everything is referenced so it’ll maybe prove helpful when dealing with medical professionals. It was £15 on Amazon and I’d say it’s worth having if you have the money at your disposal. Pre-diagnosis my Mum sent me “the Mind-Body prescription” which just about sent me over the edge so I know how you feel about bloody unhelpful books!!

      This one is certainly not one that will make you upset or angry. It’s very matter of fact but also has a section on coping from other people with EDS.

      R x

      Liked by 1 person

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