Weekly roundup

I’ve been feeling rubbish for a month now, with particularly bad ‘brain fog’.  Both my back pain and insomnia are the worst they’ve been in years and my get up and go has got up and gone.  My joints are stupidly stiff, particularly in a morning, and there isn’t a ligament, large or small, which doesn’t hurt.  Yay.

I’ve not had a cold or a virus, not been under any different stresses to usual and not been doing or eating anything I shouldn’t, so I can only put it down to my hormones which are definitely on the rampage.  My endometriosis pain is really bad every single day at the moment and I’ve no idea why that should be other than my peri-menopause is ramping up a gear.  I feel like I’m having a permanent period only without the bleeding – my worst nightmare.

However, life carries on and this week has been really busy.  Wednesday I did the 60 mile round trip to the city for Mum’s oxygen assessment for which we’ve waited nearly eight months.  It’s a dedicated COPD clinic and the physios there were lovely.  They were mortified that my Mum had lung surgery 5 years ago and has not had a single appointment since with a dedicated COPD team nor any kind of rehab, and we haven’t been given a scrap of information on her disease, how to manage it or what to expect as it progresses.  That’s because there is no COPD Clinic where we live, but just because we don’t live in a city doesn’t mean we should have a complete lack of health-care for this terminal disease.  It’s a bloody outrage.  The outcome of the appointment is that Mum’s breathlessness isn’t so much a result of a deterioration in her disease (although she is in the ‘severe’ category) but more to do with her absolute lack of fitness coupled with her poorly lungs.

Thursday I had to starve myself until 2pm ready for my gallbladder scan.  I knew I didn’t have gallstones but they did find 2 small polyps.  I seem to be riddled with polyps as they also found no less than 11 when I had my first stomach endoscopy, some of which were really quite big.  They aren’t common in the general population and I would guess are mast cell disease related (there is research which shows increased mast cells in endometrial polyps and some debate as to whether mast cells are implicated in both nasal and colon polyps which have become cancerous).   Polyps can turn nasty so should be monitored regularly, which doesn’t happen because my local hospital is skint and can’t afford to do preventative medicine.  I’m still waiting for an appointment to see the Gastroenterologist about my continued stomach/oesophageal pain and low iron levels, which I can’t convince anybody is just severe reflux (due to overly zealous mast cells producing too much stomach acid, and my weak connective tissue causing my stomach sphincter to be floppy and allowing the acid into my oesophagus.).  I also suspect I have endometriosis on the outside of my stomach but good luck with having that confirmed, because my local hospital missed the humongous amounts of endo in my pelvis when another hospital found it no problem!  They really are feckin useless.

Friday I had to be up at the crack of dawn as a plumber was coming to service my gas boiler and fire, so I had to empty out the airing cupboard in the bathroom.  Afterwards, I followed him into town to my parents’ house as they’ve had a godawful smell coming from their kitchen sink for ages now which, despite our best efforts, we haven’t been able to solve.  I got there to find my Dad looking totally washed out and discovered he’d been up all night puking.  He’s never ill so to discover he’s had some kind of bug was a shock.  Bless him, he’d been sick in the bathroom sink and must have given it a blockage because the water then wasn’t draining well so I had to nip up to B&Q for some sink unblocker.

My Mum now really struggles to get up off the couch, so this week got rid of one of the little sofas in their lounge ane replaced it with 2 riser recliner chairs, so while the plumber was doing his thing my Dad and I spent 2 hours repositioning all the furniture in the lounge trying to find the best place for them.  My back was sodding well screaming before I even started and my poor Dad looked like he was about to keel over.  Inbetween all that, my brother rang and asked my Dad to give him a lift to work so I went instead as I didn’t think Dad was up to driving.  I then had to organize for the old sofa to be taken away which sounds easy but was a sodding nightmare.  I felt so sorry for the Old Fella who, bear in mind is nearly 80, had hardly had a wink of sleep, been violently sick then had to clean up after himself, change the bed sheets and wash them along with his pyjamas, and was just expected to carry on like nothing had happened.  If my Mum had been up all night puking she would have expected to stay in bed and be cared for but my poor Dad gets no such treatment.

My garage is up a shared driveway and I have to pass my neighbour’s house to get to mine.  I often stop to chat to the lovely couple who live behind me but on Friday discovered a very stressed Rob who was having a mare with Amazon.  £79 had gone missing from his bank account and despite trying for 1½ hours he still hadn’t got it sorted out.  My neighbours are in their seventies and find the internet confusing, so I said I’d help.  I discovered he’d been signed up for Amazon Prime without his knowledge (he didn’t even know what Amazon Prime was) so I managed to cancel the subscription and get him refunded.  All of which meant I didn’t reach my back door until 4pm and was just about on my last legs due in no small part to the fact I’d only managed 3 broken hours sleep the night before.

Summer officially arrived on Saturday and the weather is gorgeous so Bertie and I sat by the river for a couple of hours watching the wildlife and having a much needed chill.  To me, where I live is paradise and as I lay there in amongst the buttercups, with little Sandmartins swooping overhead, sheep and lambs peacefully grazing just feet away and the gentle babble of the river in which a Heron was fishing I couldn’t help but count my blessings.  Days don’t get any better than that 🙂

 

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2 thoughts on “Weekly roundup

  1. Karen, The Walking Allergy

    Hey Jak! I know u hate the ‘Have you tried’ advice- but tough, I’m gonna do it anyhow! 😜

    You mention low iron. I’ve just discovered that iron can help stabilize mast cells… which explains why I felt SO good from my iron infusion. My reactivity has leapt up again- and my ferritin is back in the single digits. Less than a month after two infusions… I reacted to it, but I think it was actually the saline bag (it has DEHP and polyisoprene in it).

    Pelvic pain. Some people have had success with reducing menstrual bleeding by using a diphenhydramine douche. I wonder if it would help with pain… I suppose it would likely depend on what is causing the pain.

    Gall bladder- you don’t need stones to make it hurt like hell. I had mine out in my 20’s. Fine on all the scans they did here, went back to Toronto, and they did a HIDA scan (I think that’s right). It wasn’t emptying. Had it removed, felt better the next day than I had in a year. Now I’ve got the Sphincter of Oddi dysfunction (I’m almost certain), I suspect that that may have been why my gall bladder got ‘sludgy’, but that’s a guess.

    Sitting in the sun in early summer. Feels SO good. Perhaps we should try being breatharians. (They beleive it is possible to live on the suns energy alone- right. Moving on…).

    Enjoy the sun!

    Karen

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    1. Jak Post author

      Very interesting re iron and mast cell stabilization Karen, thanks for that. We don’t have infusions here, instead they give you supplements that make you so ill it’s worse than having low iron!

      My pelvic pain is endometriosis, adenomyosis and polysistic ovary related. I’ve had the conditions for 40 years, untreated, so everything is stuck to everything else and the pain is dreadful. I urgently need a hysterectomy but can’t have one due to my drug reactions 😦

      I’ve had no pain from my gallbladder, it’s all coming from my stomach/oesophagus. They wanted to check my gb though because my Mum had hers out in her forties – her gb pain she said was worse than childbirth, so I feel for you if you’ve endured that!

      Enjoy the sunshine. We’ve having a heatwave here in the UK – lovely jubbly 🙂

      Jak x

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