Miss Evie

Uni Student. Spoonie. Music addict. Book fiend. Proud Hufflepuff. Skam-aholic. Cricket fanatic. Daydreamer. Procrastinator. Full of Wanderlust. Sunset lover. CFS/ME 15+ years

[king-a-queen]

The juries' votes

[feathersbonesandstones]

"Only an idiot could miss what this is about. So maybe Putin WILL miss it"

- Swedish commentator Måns Zelmerlöv on Croatia

[tangledupin-blu]

I love seeing Simone from Voyager rock out as a Migraine Warrior with her Avulux glasses on stage and getting through Eurovision! Seeing as I just need mine to watch it at home! (See top left)

[noah-wyles]

COMING OUT MY CRATE AND IM DOING JUST FINE

[tangledupin-blu]

Tumblr is my scream into the void place and tonight I need to scream into the void.

Beginning of November I was starting to actually get to a better baseline with my migraine attacks between my daily preventative (topiramate) and monthly preventative (Ajovy injection). Especially with also starting trigger point injections for my nerve and tension issues.

Then my endocrinologist put me on Duromine. He thought it might help me two fold as he thinks I’m likely ADHD (did the self test, came up super positive) from years of brain inflammation. I was reluctant to go on it, scared I might overdo things. Had heard some other horror stories. He dismissed me and said oh it’s only the 15mg dose. And it’ll work well with the topiramate. And yes I could have just not filled the script but at that stage I still trusted him pretty implicitly.

I’m still trying to to find an appetite suppressant that worked as well as Ozempic (like the rest of a lot of people with a mass of health issues that actually need it including Type 2 Diabetics but it is in shortage due to unscrupulous prescribing and other issues). I’m still trying to lose all the weight Lyrica made me put on in 2017-18 plus I’m insulin resistant and inching towards Type 2 Diabetes with a family history so I’m trying to be proactive and I can’t exactly exercise it off.

Anyway first few days I had the go fasties as I expected because well it is a stimulant but also started to get a few bad migraine attacks but it was the week before Ajovy and the air pressure was playing up and that is my worst trigger. Then I had my Ajovy and no good still. In fact it got worse and worse.

Long story short. Lasted nearly 3 weeks on Duromine, lost no weight, had almost non stop migraine attacks. Found out that if duromine and topiramate are prescribed together the topiramate is in much smaller doses than what I’m on (and only in US and slow release). I’m still not back to migraine baseline. Pretty sure my endocrinologist thinks more about himself than his patients now, he actually tweeted about empathy fatigue from dealing with Long Covid and ME/CFS patients ( try living it mate!). I’m mad and haven’t even reported back to him how it went. He just started off being so helpful and empathetic and now I feel like he’s not really interested in trying. He blames the system. But really he’s just nearing burnout and it’s his longer term patients that are losing.

So here I am day 4 of my current migraine attack and tossing up if it’s worth the risk of going to hospital, because even though I’ll go to a Private Emergency there is always the chance I could pick up COVID with the way numbers are heading. Plus the one other time I went to hospital for an attack I reacted to a medication and I don’t know what it was but it made me super agitated.

[tangledupin-blu]

You would think 20 years in I’d know better…

To be fair the first part of pushing through from 7th September had to be done because I was packing and moving for the 3rd time since last July (and hopefully last for some time).

Then last weekend was my birthday weekend… and I pushed through that with a migraine attack.

And then Monday I crashed and this week has just been struggle town. Migraine flaring, ME/CFS flaring. Also pretty sure my thyroid which was just found to be playing up in August is even worse despite meds.

And because I’m now so run down just as everywhere is dropping all covid mitigations I’m getting more anxious about getting it.

So that’s fun!?

However new house is lovely, new housemates are great. So that is good.

[tangledupin-blu]

My heart rate finally dipped under 120! And my pain is finally somewhat manageable. Only took 6 hours and lots of meds. Maybe sleep will happen now?!

Pretty sure if I wasn’t chronically ill I’d be off to the hospital like this but fuck I hate hospitals with a passion, plus the whole pending PCR result makes things more difficult. And the last time I went I literally felt worse when I walked out than when I went in.

[tangledupin-blu]

I am so mad. And so in pain.

I just got over a sinus infection after 2 lots of antibiotics so on Tuesday I was exhausted after physio and got a rideshare for half the journey home.

My physio is a headache specialist so I still see him even though he is back where I used to live before last July. He has helped me immensely and I’d be in more pain without him.

Prices were surging on rideshare because it was hometime but I was feeling faint and just wanted to get home… dude rocked up massless even though masks are still mandatory for rideshare. I was in his car for about 15 minutes and he was coughing and sniffling most of the time and had the heating on a bajillion even though it was 23° outside. I was masked but I think I reached to scratch an itch at one point.

Now I’m coughing and sniffling and have the worst headache imaginable that ox-y has barely touched and awaiting a PCR result and trying not to freak out.

And in another sense of irony if it is the flu not c19 I was going to have my shot this week originally but pushed it because of the infection.

Just mask up people! Us vulnerable people need you to!

[tangledupin-blu]

So I suggested my endocrinologist in a Facebook group for ME/CFS a few months ago when a lady with ME plus thyroid issues posted looking for a doctor and even though he was a specialist she was interested.

Today she replied saying she saw him this afternoon and burst into tears a few minutes in because he was the first doctor who had listened to her properly in years. And was very willing to work with her. Plus she thinks he can help her son with his complex health issues too.

And I can totally understand that reaction because that’s how I felt in my first appointment with him.

Even 20 years into chronic illness I’m surprised when I do find a good doctor and isn’t that just depressing…

But I think I finally have a team of doctors to help me get some where.

[tangledupin-blu]

They turned off my friend’s life support today but in her true spirit she was an organ donor so she was generous to the end.

It hurts so much right now but knowing she might save some others lives helps somehow.

But 27 is far far too young.

Cherish those that you love and tell them how you feel!

[tangledupin-blu]

I’m shattered.

I just found out a friend is on life support after an aneurysm yesterday and she isn’t expected to make it to the weekend. She only turned 27 just before Christmas.

She isn’t a close friend but she was part of my book world and was at just about every event and I always looked forward to seeing her and over the last few years she has worked so hard on her fitness and general (and mental) wellbeing. And I was so looking forward to seeing her again.

I just don’t understand life sometimes.

[battingonjakku]

give women more test cricket you fucks

[tangledupin-blu]

Women’s Ashes Test - Day 1

[tangledupin-blu]

The slowest 15 minutes is surely while you wait for your rapid antigen (or lateral flow) test to be ready.

[tangledupin-blu]

It was negative so hopefully it’s just Post Exertional Malaise (PEM) from overdoing it. We shall see..

Just ME/CFS things!

[tangledupin-blu]

The slowest 15 minutes is surely while you wait for your rapid antigen (or lateral flow) test to be ready.

[tangledupin-blu]

Ughhhhh!

Got back to Brissie yesterday and as expected from having (and needing - because weak immune system) to wear a mask for most of 4.5 hours I ended up with another migraine. Put the aircon on, took meds and went to bed. Despite that I had the best sleep I had in weeks!

So the place I moved into just before Xmas is an interesting set up. My landlord (who is generally pretty chill) lives in a two bedroom unit at the front, with his daughters (6 & 8) spending half their time here and half with their mum. Then I share the main house with 3 other women aged 22-31.

It seems in my 2 week absence my roommates have been cranking the aircon unnecessarily, so today my landlord has cracked the shits and has changed the settings, for example currently it’s only on fan and not cooling (we can each control it from an app).

So it is midnight and still 25° outside (so opening the window isn’t really an option) and my room is stuffy and 23°. I’m currently still in the middle of the migraine attack and just had to put together my previously unneeded fan to hopefully get some needed sleep. Like I could change the setting but after getting a talking to only hours ago it’d feel a bit cheeky.

Also I’m really struggling with the fact that this place (my roommates in particular) might not be the place (people) for me but I was desperate and it is only for 6 months…

[tangledupin-blu]

Okay this migraine can go do one now.

I’ve thrown everything at it and I’m still in a lot of pain and sleep just isn’t happening either aaaand I very much want to avoid a hospital trip even though I’d probably be safer going to one in Canberra than in Brissie with current COVID numbers.