Thor’s Dag

So. It’s Thursday. Just a typical day – the day after Anzac Day, in fact. I’m sitting in the uni computer lab chatting to an advisor about how I can withdraw from the course without penalty, since it’s after the census date, after all. I’m in the final year of my degree, and I’m withdrawing yet again because what I *think* I’m capable of doesn’t match up to the reality.

I know I’m mentally and physically capable of doing this, and honestly it sounds like a pathetic cop-out even to me, but somehow since my surgery last year, everything has further gone to the crabs. Finally, I broke down to BB and admitted that I just couldn’t do it anymore – not in our current situation, anyway. If everything else was perfect (heck, I’d even settle for average), I’d have no problem with completing uni, plus working, plus cooking/cleaning/exercising/socialising/whatever else it is that people (or what I used to) do every day. But it’s not, and so I ultimately had to admit that what I thought I could do wasn’t what I actually can do. It sucks, because I always have my family’s voice in my head telling me that I just have to, and that I’m not trying hard enough. I generally believe in mind over matter, but this is a matter of being physically incapable. The spirit is willing, but the flesh is unfit.

It’s a catch-22, as I’m realising it probably is for all sick people: you don’t feel good/can’t do the things that you usually can, or that everyone else seems to do without as much difficulty, so you try to fix it – you go to the doctor, physio, specialist, surgeon, get some tests, get some prescriptions, try them out, react badly, get surgeries, can’t recover in the same time, can’t keep up, and miss out on school/work and you don’t feel good, so you start the whole process over again. Over and over until you finally strike a balance, until the next time. Most people never find that balance, or can’t afford to keep trying. If you’re lucky, you’ll manage it most of the time, but it will always be there in the background.

I think I’ve mentioned it in a previous post, but after my surgery I threw up everything I ate for several weeks, followed by some things being ok, and then really being not ok, and throwing up again, until it finally settled down. However, something else started instead; something I’d actually experienced a few times before, but never to this extent, or as often. Every time I ate something, my stomach would hurt and feel super uncomfortable, I’d get shooting pains behind my ribs, and my whole abdomen would blow up like a balloon. Really uncomfortable, gross and embarrassing. Except now it’s almost every time I eat anything that’s not rice mixed with miso soup, water and filmjölk (like a Swedish drinking yoghurt). It keeps me up most of the night, even if I’m utterly exhausted, I just cannot sleep (what most people in the chronically ill community refer to as ‘painsomnia’). The other issue is that it will happen for a few days/weeks and then I’ll be fine again to eat most things for a month or so, so it’s difficult to predict. But every time it happens, it’s for longer, more often, and much more painful. Not only that, but I can’t tell whether I’m hungry or nauseous most of the time, which is a really weird feeling, and if I don’t eat every few hours, it gets quite painful and uncomfortable and I feel like throwing up.

Why don’t I just stick to those foods to be safe? Well, think about your favourite food, and then imagine that you could only eat the blandest baby food for the rest of your life, no matter how hungry or how much you’re craving it. I love to cook, and love to try new foods and go out for dinner and drinks (although alcohol has been an issue itself for a few years now -_-), and now instead of: ‘hey honey, what should we eat tonight?’ it’s: ‘ok, more sloppy rice?’ ‘yeah..I guess…’.

Something I think a lot of people don’t realise or give too much thought to (and I’ve been one of them) is that you see sick people – and I mean chronically ill, terminal people – stuck with IVs and ports and pumps, and getting tests and blood tests and scans and ultrasounds, and you just accept on face value that that’s what they’re used to, that their life is like that. But sick people can hate needles too, or faint when they get blood drawn, or hate swallowing giant tablets all day and feel over it and sick, and gross, and not want to. But they just have to, and don’t have a choice. It’s something that you never really get used to. I can’t count the amount of blood tests I’ve had in my life that keep giving me different readings every time, or the amount of doctors I’ve seen, or the amount of tablets I’ve taken. You just want it to stop, and be able to do normal stuff like everyone else – not even everyone else – like you used to. You want to stop being exhausted and unable to concentrate, and to just snap out of it, but it never ends.

Anyway, I’ve got repeats of repeats of blood tests to do for thyroid and coeliac testing and other things I don’t even remember, and stomach ultrasounds and whatever else, on top of the three physios I’m going to for neck, jaw and knee rehab, as well as a specialist dentist for my jaw. Last week I had to test for stomach ulcers, which came back negative – great, right? But in this world, it just leads to more questions, and more tests.

So, my disability support (oh yeah, I have a disability support case worker now, although I’m not on disability), and my doctor have recommended I take a break from study, as I simply can’t keep up with the course load, having a couple of hours to focus on a good day, and am never able to predict when I’ll have a flare of something with regard to due dates and deadlines/tests. My muscles aren’t firing or engaging properly to be able to recover from the surgery, and it only takes a couple of days for muscles, with EDS, to atrophy, so I have to do physio every day to try to make any kind of progress. Of course, on top of being able to focus or have any kind of energy with everything else, is where that aforementioned catch-22 happens.

I used to be so athletic. In my teens, I’d do 100 situps and pushups every morning, walk to school, do 2 hours of touch football, walk home and go to the gym and do 50 laps in the pool. That was an average day for me (a bit too much, but my family are PE teachers and coaches and have an obsession with exercise, to the detriment of actual schoolwork). I used to be muscular and slim, although I thought I was fat (ha! If 15 year old me could see me now, fml). I used to do a full face of makeup every day, no matter how I was feeling, and dye my hair all the time. I had piercings and plans for more tattoos, and go out drinking all night. I’d had medical issues since birth, but I always did more than other people and pushed myself further than the average person, which was when I started to experience the real symptoms of EDS. Now, I can’t even get out of bed some days. I have to sit on a chair in the shower, and having BB even touch my skin sometimes feels like a punch. He even has to lift me off the couch sometimes. It feels utterly pathetic when I still see myself the way I’ve described above. That’s why it’s taken me so long to admit what I can and can’t do.

Wow, that sounds overwhelmingly negative, but actually, although I have so many frustrating and exhausting things to deal with, I have never been this happy, overall, in my life. I said I would be honest, authentic, and fearless when it came to representing myself here. I’ve been exhausted every day lately for no reason, and trying to balance everything to actually make some recovery progress. Actually, the last post I made took me and BB months to create, and I only finished it the other day before posting. But I still love doing the things I used to, although sometimes I literally can’t handle it, I still like to be asked. I’ve even found new hobbies that I actually can do – if you’ve been following my insta or facebook, you’ll know I’ve discovered a passion for video games, and art I can do on an iPad from bed.  Hopefully now I’ll be able to be more active on here, since I feel much more creative without the stress of being able to keep up with uni at the moment.

Sorry for the long rant post! Just some thoughts in between promised posts, ie Skincare :|. With so much brain fog, it’s all I can manage, and if I tried to make proper posts, it wouldn’t be anywhere near the quality I want. So for now, I’ll be playing God of War and Tomb Raider, and experimenting on Procreate, while I try to keep up with rehab and figure things out.

Love,

Lo xx

Surgery Recovery Part Two: Australian Christmas without Aircon

Hi!

So, as you might have garnered from the title, this is an update on life, and in particular, since my surgery. First of all, I have to admit I have been rather absent, but that’s intrinsically connected to the theme.

Pain

For a while there, I felt like I was doing quite well. I had to start my next semester over the summer, so I was weaning myself off painkillers, which wasn’t hard, because I didn’t feel like I needed them anyway. However, the surgeon was very disappointed in my lack of progress and muscle atrophy, although I hadn’t had any physio rehab at all, so I started going back to a Brisbane-based physio that specialises in hypermobility (one which has helped me more than any other physio I have ever been to – not just in terms of progress, which is incredible, but in actually understanding and being knowledgeable of what exactly is going on – instead of just pushing me to do thousands of full squats [insanely bad for my knees] or shaming me for not doing more heavy cardio or box jumps [wtf?!?!]) and started improving my mobility and range of motion (rather than having my leg straight out all the time). Okay, this has been extremely tough. So tough in fact, that I’ve had to get another prescription from the surgeon for Gabapentin, an anti-convulsant, because it seems to be the only thing that helps with widespread pain, and especially the nerve pain I’ve been getting, since there is a huge area with loss of sensation. Lately, I’ve felt like there isn’t even half of a day that’s gone by where I don’t have almost crippling pain, to the point of distraction. It exhausts me, but then I toss and turn all night, because my legs ache so badly.

Rehab

In spite of what I’ve said above, I’m quite happy with recovery overall, at least superficially. My scar is healing fantastically, thanks to Klairs Vitamin C Serum, and massage and stimulation has been helping the scar tissue and numb area. I’ve been bending my knee and walking a lot, which is a huge relief, because I was beginning to feel like a blob ordering everyone to wait on me, hand and…knee (yes, I hate myself extra for that one).

I suspect that it’s because of how the bones in my legs grew (long story short: weirdly), but I find that I simply cannot build up the muscle adequately in my medial quads – on both legs. I gain muscle way too easily in my calves and the lateral quads, however for some reason, nothing seems to be helping, and I’m not at the point yet where I can safely do squats or leg presses. The fact that it’s on the other side too makes me think there’s some weird way I’m walking, or my posture, so I guess I’ll have to talk to the physio about adjusting that, too. Hhhh. The reason it’s so important to build that medial quad is because it helps stabilise the patella – my ITB and lateral quads are way too strong and pull my unstable kneecaps to the outside of their shallow sockets – hence my problem with dislocations, and subsequent surgeries.

What Else?

Hmm, I’m pretty boring lately. All I do is study, watch Korean dramas, play the Witcher 3 on my (Christmas present) PS4 Pro (wtf, thank you BB!! *_*) and try to get out of the house and explore when I can. Things are pretty uncertain since we don’t know whether we’ll be moving or where, still.

Oh, and we don’t have aircon and live next to a forest on a hill, so it’s been almost unbearably hot, especially with Dysautonomia symptoms…not to mention the fact that the floors somehow started condensating and wouldn’t dry for days?? It was as if they’d just been mopped, no matter what. Super scary for me, considering on my last surgery, I slipped on a mopped floor and tore my incision open.

Things to be Thankful For

I feel like I’m overwhelmingly negative in these blogs, so I want to balance it out with some positive things.

  • Feeling healthier and lighter with a tweaked diet that I know works for and helps my situation most
  • Being able to get up and be more independent
  • Having time with BB and family
  • My puppy seems to be tolerating instead of hating me lately
  • Able to go to the pool (once…in the seniors rehab pool lol)
  • My Irish skin seems to be tanning without burning for the most part?? Finally!
  • Able to explore the Coast and Northern NSW – super pretty
  • More stable work for BB – yay! *_*
  • Able to start planning our lives more – for someone like me, uncertainty is like a constant stress weighing me down
  • Planning lots more posts and taking things in a direction I want and am passionate about – stay tuned!

That’s about it for now! Thanks for reading 🙂

Love, Lo x