It’s been A Month. You know one of those months when you’re just holding on by your fingernails, and you’re already borrowing your springtime spoons in order to get through winter.
A Month.
A number of frustrating things – post-school term exhaustion led to health crashing during the holidays, because I just needed to be able to sleep past 6am for a few weeks straight. One of the children caught headlice. Everyone else was clear, but a metric ton of work is still a metric ton of work, even if you don’t need to triple it. It’s cold and grey and awful and we’re all suffering deeply from SAD.
Our build is progressing slowly, in an “insert maniacal laughter here” kind of way. Turns out, the support feet should have been concreted into the ground LIKE I SAID and they were not, so now we’re waiting for new parts to arrive from the mainland. In the meantime, there is a lovely mud pit for the dogs to bathe in (regularly) and I cannot wait for everything to be finished with a water tank collecting the rain instead of it pooling on the ground.
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I saw the pain management clinic again, which has left me exhausted. Not in a bad way – to be honest, it was the most successful specialist appointment I’ve had in a number of years, but I’m still processing and it has been hard. Lots of mental work.
The last time I saw pain management, I had two very small children, I was mired in a quicksand of grief and exhaustion, and my diagnosis was still fairly new. The physiotherapist didn’t understand Ehlers Danlos Syndrome and got very angry with my inability to attend regular tai chi classes, and it all went to hell fairly fast.
This time, we were all on the same page. My local (amazing) physiotherapist and I had already worked out an exercise plan prior to seeing the pain management team, so I didn’t have to see their physio and risk having them misunderstand how the injury/dislocation/pain/recovery cycle works for me.
However I have been diagnosed with Central Sensitising Syndrome, which makes a lot of sense, and we will be working on managing my pain better and not “toughing things out” in order to try and reduce some of the sensory overload being caused by pain/dislocations/exhaustion.
So. There’s that.
It’s day four of Gabapentin now, which I seem to be tolerating much better than my disastrous trial of Lyrica. It’s helping with sleep, and I’m reminding myself that any side effects will ease as I adjust. On the up side, it doesn’t make me immediately sleepy, so a dose at 7pm sets me up fairly well for a normal bedtime.
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We’ve got a few days of school holidays left, and while I am very much looking forward to some free hours again, I am dreading the early mornings. I am a much nicer person when I get to sleep until 7.30am every morning, rather than being woken by my alarm at 6.15 every day. Blech.
Everyone is desperate for springtime, and the easing of the cold dark. It hasn’t been as dreadfully icy as last year, but it’s just so bleak here in the middle of winter when it feels like it’s dark all the time. Applying indoor plants to all living spaces is only successful to a point.
But we’re almost a month past the solstice now, I have two hens laying eggs (and nine slacking), and my indoor plants are thriving. I will have fruit trees to plant next week, which always helps with mental health, and it’s almost time for Markets to begin again, which is nice for my financial health.
In the meantime, soap is still available online, and I really need to be making more stock ready for the lead-in to Christmas instead of hiding under a blanket reading books.
I’m not quite sick of winter yet, we’re a fair bit warmer here in Adelaide than you are down there, but there is still August and September with the frosty mornings to get through and of course the wind-driven rains in September, but I’m retired now and spend most days in bed until around 8am until summer comes.
Sorry to hear about the head lice, try my daughter’s remedy? A bottle of tea tree oil into a spray bottle, top up with water, every morning shake it up then spray the hair lightly and comb through. Do this once the lice are gone of course, it’s preventive so the kids won’t get them again. T tried it when her two were in Primary School in the hills area which is lice heaven each autumn and E & S never got lice again after the second year.
We were doing the tea tree spray religiously with Eve, because we expected her to be the child to pick up lice! (Thick hair, and she hates it tied back). Turns out she was not the one to worry about. Tea tree spray for everybody!
It isn’t the cold so much this year – we put insulation in the roof over summer (finally!) and it has made such a huge difference to how pleasant the house is, particularly overnight. I’m just such of the grey and dark. Turns out I am actually a plant, and 9 hours of daylight is not enough for me.
I must admit I love winter! I hate the heat and love curling up under my favourite blanket with Netflix and nice glass of red. I’m also flushing at the moment so this winter I have been walking around in T-shirts anyway! hahahaha
I don’t think it’s the cold this year, but the darkness. We’re only just managing 9.5 hours of daylight a day, and it’s getting a bit old. I’m not a fan of 35+ temps, but at least in summer we get so much daylight.
I know that SADs feeling well. It hasn’t got me yet this year. I also fully appreciate the pull between school holidays and not. Love the routine roaming free ….but hate the lack of time alone. Hope spring comes early in the Island state.
Yes! And we crave summer, but then December is a write-off with work and school commitments, and then they’re home all January. It’s a constant juggle.
I hope we get an early spring too.
Hi I live in Tassie too and have EDS. It’s like reading my life in your blog. It’s definately a juggle between health providers, pain clinics, GP’s, physio’s, and any other therapists that get on board your team. I have two adult daughters who display symptoms but have yet to be diagnosed. I was only diagnosed about 3 years ago after 20 years + battle know something wasn’t right. I attend the pain clinic and currently seeing theur Physio but I think I will also see my other Physio for long term program as currently they are concentrating on my knee that needs replacing but I’m to young to do it yet. The pain clinic took me off lyrica and now reducing gabepentin as was on high doses of both. Also taken endep for insomnia. Thank you for sharing your journey. Us zebras aren’t alone in this fight.
Tassie zebras unite! Surely there are enough of us now that the doctors can stop scratching their heads like they’ve never seen anyone bendy before.
Endep didn’t work for me – even a 1/4 tablet at the lowest dose knocked me for six and left me foggy for days. Gosh I slept well though. I had an allergic style response to Lyrica, but Gabapentin seems to be working thus far, at a baby dose. Palexia is my standard painkiller, and it works beautifully. No head interaction so I never feel stoned or ill taking it. Best thing ever.
Yes we could be mistaken for thylacines (tassie tiger-haha not a zebra). Only trialling endep with pain clinic as I used it before but didn’t help. I also take pristiq to help with pain responses. Hoping to attend the EDS society conference in Sydney in December for patients. I think with this condition/syndrome knowledge is definitely power. If only we could get the team on board to manage us and stop all this fluffing around. I was asked once how I felt when I was in pain. I advised them I wasn’t sure especially at night when I wake up in pain, no recollection of how I felt, just that I was in pain and I rolled over in bed. Sometimes you just have to shake your head.
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