Weekly roundup

My little autumnal blip seems to be stabilizing, though I’m not anywhere near as good as I was in the nice weather.  The good news is that my brain fog has lifted (I’m always foggy headed, but at least now I don’t feel like I’m drugged) and I don’t feel as fluey and achy.  My energy levels are also better, if not brilliant.  The bad news is I’ve had a run of stonking headaches/migraines, my pain levels are still high (my hip is getting much worse) and I’m still not sleeping.

Despite everything I’ve had another busy week, but at least it was self-inflicted (for the most part).  Monday I had my long-awaited appointment with the Oral Surgeon regarding my sub-luxing jaw and TMJ pain.  He’s suggested trying a mouth guard on my bottom teeth at night, which I know won’t do a shite of good.  However, I have to try it if only to tell him it’s not done a shite of good.  I go back to see him in February for a follow-up.  I know the answer is actually some kind of mouth guard, but it’s going to have to be custom made and somehow fused top and bottom to stop my jaw slipping into my earhole as I sleep!  He was actually a really nice Consultant though, and was mortified I hadn’t been under the care of a Rheumatologist since my Ehlers-Danlos was diagnosed back in 2010!  He’s going to write to my GP and strongly suggest I see someone locally.  The other thing he was horrified to discover is that I don’t have an epi-pen, despite my almost total drug allergies and history of reactions after food.  He suggested I tackle my GP about this, though I feel it should have come from Dr Seneviratne when he wrote to my GP last year.

Tuesday evening I attended a 2 hour beginners workshop run by my local camera club, and Wednesday evening was the weekly camera club meeting.  Oh boy do I struggle to do things in the evening, let alone two evenings on the trot, but I was still glad I made it even though four days on I’m still suffering the consequences.

Yesterday (Saturday) I also attended a 2 hour workshop on how to mount photographic prints.  This coming Wednesday I enter my first camera club print competition and there are strict rules on how entries can be submitted.  There are 6 competitions in all over the year and the person scoring highest in their class gets promoted to the next class up.  Here are my two entries – wish me luck!

Today my friend K is coming over and we’re going out for lunch.  She’s been chocka with cold for weeks now and it feels like forever since we’ve had a natter, so I’m looking forward to that 🙂  I then really need to rest this week (well, apart from my Dad’s hernia operation on Tuesday and my physio appt on Wednesday for my hip,) so that I have enough energy to get to the EDS conference next weekend.  Who am I kidding?  My Mum can’t do a thing, and following surgery I’m fairly sure my Dad will also be laid up, so I will be on Daughter duty the entire time.  Not that I mind, because Bertie has practically lived at their house this week while I’ve been gallivanting, as well as staying there overnight if I ever do make it to Birmingham.  He loves being at his Nanna and Granda’s because they eat meat and give him all sorts of treats off their dinner plate which he never gets off his vegetarian Mum.  It’s a wonder he ever wants to come home 😉 .

 

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6 thoughts on “Weekly roundup

  1. kneillbc

    I’m glad you’re not feeling too awful!

    I used to have terrible jaw pain- I ground my teeth, and my front teeth were cracking (not chipping, but hairline cracks up and down the teeth). I tried a night guard, which I managed to break on the second night I wore it. Then I decided to get Invisalign braces, so that after that I could get veneers on my front teeth to (hopefully) stop the cracks from getting worse (like you, I have ridiculously weak teeth- I broke a molar in half once going over a bump on a gravel road in a car). Lo and behold- once my teeth were in the right place, I stopped grinding, and stopped cracking the teeth, and some of the cracks are even healing (much to my and my dentist’s surprise). Something to consider. As well, the way the Invisalign are designed, they work as a nightguard too. My jaw still subluxes all the time, but, like all my other joints that go in and out, it doesn’t hurt.

    As for overdoing it- you need someone with a set of handcuffs to come and restrain you from spreading yourself too thin. (And, yes, all sorts of highly inappropriate jokes are running through my head right now), but. In all seriousness though, you are no good to anyone if you don’t take care of yourself first!!! This last relapse seems to have been ‘relatively’ mild and short lived- the next one might not be, and then you’d really be up a creek without a paddle.

    I wonder, if with this recent surgery, your parents may be eligible for some honecare. Perhaps putting that energy into arranging some physical support for your parents might be an idea- that way you will still be able to be their moral and social support, without having to risk your health as well. We have found with the healthcare system here- they are quite happy to have families take up the slack- if you even hint that you might be able to help them out a bit. With my Mother, when my sisters spoke to doctors, her social worker, the nurses at the hospital, they had to say that they could never go over, not help her at all with bathing and meals etc.. All of a sudden, she had a nurse coming in once a day, a cleaner once a week, etc. etc. Of course, they were able to give her lots of support/ but they had to put their foot down and say ‘No, we will NOT bathe my mother two days after surgery- someone has to come and help her.’ Of course, my Mother always said ‘Oh, no, I’m fine, I don’t need any help.’. I know the UK system is like ours. You can’t ask for help- it’s very hard to get, you have to demand it, nicely. If you keep picking up the slack, then the health service can get away with putting a HUGE burden on you. If you simply say to the docs at the surgery ‘You must arrange for a caregiver. I am unable to help. (not ‘It’s difficult’, but, ‘I can’t’), then you may have much better luck.

    I hope your dad’s surgery itself goes well and is successful. Surgery can be risky in older, more frail individuals, but I’m sure he’ll do just fine.

    I hope it’ say good week all around for health in your family!!!

    Karen

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    1. bertieandme Post author

      Thanks for the info Karen 🙂 I realize I’m currently doing way too much, so have cancelled my proposed trip to the EDS conference this coming weekend. It would just take far too much out of me when I’m not in a great patch to start with.

      Re my parents: the social care system here is diabolical, particularly since the austerity measures were introduced by the gvt a few years ago following the crash. I have a friend who’s had severe ME since she was 15 and is now 31. Her parents are now elderly, and have bought her a little flat nearby so that she can start to live independently as obviously they won’t always be able to care for her. She struggles with every aspect of daily living, yet Social Services refused to even *assess* her for care (despite the fact they have a legal duty to do an assessment). My friend has currently been fighting, along with her parents (her Dad is a former GP!), ME nurse and physio for 3 months now and still hasn’t even been assessed for help let alone received any. She could no longer cope in her little flat on her own so had to go back to her parents house. My parents wouldn’t even qualify for care, as they can still make a meal (even if it’s a TV dinner out of a packet) and bathe themselves which are the only 2 criteria Social Services look at. It’s truly shocking. My Dad should be up and around again in a couple of weeks, so I shouldn’t have to help out for too long.

      Jak x

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  2. Marley

    My comment this time is not about illness but about photography which I love. Reflections are always amazing especially with the photo of your boats. I am drawn to the photo of the “money plant”, which I have grown in the past. There are great shadows and it is an appropriate theme for Autumn. I spend a lot of time fatigued in bed and on the “Pinterest” APP, selecting photos of things I love. I would have pinned both of your photos! Good luck in the photo contest! Marley

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    1. bertieandme Post author

      How fab to meet another photography enthusiast! Thanks for the kind comments about my pictures Marley. I’m totally self taught, so don’t really have much clue what I’m doing, but I still love taking photos 🙂

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  3. Elizabeth Milo

    Good luck with the photos!

    You need an oral appliance like mine for sleep apnea that keeps your jaw forward, it sounds like. Although, this morning I woke up with excruciating TMJ pain, so I won’t be wearing it for a while and it’s back to my regular bruxism nightguard.

    Also,I can send you an EpiPen, if you want? Yeah, it’s probably not “allowed”, but it sounds like it’s easier for me to get them than you. Let me know.

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