My Mobile First Aid Kit for Chronic Pain/Illness

Preparation is key when you are heading out for the day!

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The past couple of years have been big for me in terms of health. I finally received my formal diagnosis of Ehlers-Danlos Syndrome Type 3 (Hypermobility type, or H-EDS), and not long after, I got corrective knee surgery, something I’d waited on (and sometimes had to ignore), for the previous five years. Lately, I’ve been reflecting on these major events, but also on the small things that make daily life more ‘normal’.

Due to my increasing understanding of EDS these past few years, I have mixed emotions. I feel relief that I am making changes to prevent and maybe reverse any further injury or deterioration, but I also have concerns, and fear of what lies ahead. I can’t help but feel sad and angry that there are so many things I wish I’d known, or should have done even a couple, let alone five or 10 years ago.

Nevertheless, most of the time I do try to stay positive, and one of the things that has made a difference is something small, but that has significant impact. I pack a day kit of a few small items I can take with me, to help me through days when I am out, which take a bigger toll on my energy, and sometimes cause pain due to the extra exertion.

Some days, I don’t need it at all, but the nature of the illness is such that you will never know what will happen; maybe I turn a corner and dislocate my knee, or I pull my chair in at a restaurant and dislocate my thumb (both of which have happened), among many other things. If someone were to ask me a couple of years ago what I packed for a day out, I’d just tell them: a couple tablets of Panadeine, water, wallet and makeup.

Note: I’m in Australia, so this article mentions products found here, but I’ve tried to keep them general, in that you can find alternatives. Obviously everyone has different needs, but this is what I’ve found to be most helpful, especially as steps that complement each other, or ‘building a ladder’, as Martina Stawski of Simon & Martina (a Youtuber couple I’ve been binging – imagine my surprise when I found a video talking about her H-EDS!) put it. This article isn’t meant to be prescriptive, but more as a guide for you to make your own kit that suits you. I’m also modifying it myself and experimenting with bits and pieces depending on my needs, day to day, but this is my core group:

  • Daiso Cellulite Roller (AUD$2.80) – This works amazingly as a mobile ITB roller/massager. Mine gets extremely tight and pulls my kneecap to the outer side = more likely to sublux or dislocate, so when I do more activity than usual, I NEED to use this. I have quite a bit of trouble standing and walking, but for some reason cycling and gym work is much easier-I’m grateful just to be able to do activity and exercise in general, though. For something so simple and cheap, it’s a must-buy!

  • Lockeroom Pocket Physio Triangle (AUD$15) – You can get this from any physiotherapist, and it basically acts as a pressure point you can use, eg for tight Temporomandibular Joint or for deep-tissue pain in shoulders/neck
  • Magnesium Spray (AUD$20) – this may sting and itch sensitive skin, but it can help muscle aches. I was sceptical at first, but I do find if I’ve been lacking magnesium I get muscle cramps and spasms, so this is a good way to get it into the affected spot quickly
  • Futuro For Her Wrist Guard (AUD$30) – especially if you do a lot of computer work or your hands get stiff, this helps give some support to wrists and hands. I take the metal part out so I can sleep with it if I need to.
  • Oval 8 Finger Splints (~$8 each) – not gonna lie, these can be a bit uncomfortable at first with delicate skin, but I never realised until I wore them just how much I hyper-extended my fingers. You won’t be able to use these if you need to write (unless you can get away with writing like you’re 4 years old), but typing is fine. I’ve lost a few of these, so I suggest keeping them in a little bag/box when not in use!
  • Strapping/KT tape (large) with small scissors – For sprains and dislocations, having that extra support is essential – you can find tutorials on Youtube if you’re ever stuck with how best to use it. Buy the large tape, and if you need to use it for fingers or smaller joints, just cut the tape lengthways/half as required.
  • Brita Sports Filter Water Bottle (AUD$15) – there’s hard water in the taps where I live, so it’s nice to be able to fill up wherever. If I don’t drink at least 2L of water a day, I don’t feel very well, so this is extremely important. I’ve found it is the most sturdy filter bottle widely available in Australia, and I always look out for 30% off sale specials for the filters.
  • Deep Heat Cream (AUD$5) – first of all; if there was a perfume of Deep Heat, I’d be the number one customer in the world, second; this can help even just by distracting from acute pain with the coldy-hot sensation (via Methyl Salicylate – be careful if you have a sensitivity – I do, but for some reason, I find using this fine), and the smell (for me) is super comforting and refreshing
  • Omron TENS Unit (AUD$50) – Again, something at first I was sceptical of, but when I tried it, it can help with pain management. Unless you need to place it in an awkward area, these are nice and discreet, and you can adjust the intensity and type of pulse stimulation. TENS units are really expensive in Australia for some reason, but thankfully I was able to get a really nice unit from Amazon US for a fraction of the price. Lately, Aldi has a sale where their TENS machines are only ~$30!
  • Crystallised Ginger (AUD$4pk) – I get really nauseous due to certain foods, or if I don’t eat regularly enough, or if I am being driven somewhere, so having a tin of ginger on hand that I can chew has saved me from needing to go home early many times

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  • Couple blister packs of over-the-counter medication each (Mersyndol, Paracetamol, Panadeine Extra, Telfast, Sudafed). Ibuprofen (Neurofen) or Aspirin is not on the list as it causes a lot of issues to gut lining. The pain killers in the list generally don’t take away much pain, and only usually last for an hour or so, but are sometimes preferable than taking anything stronger or nothing at all. I’ve included antihistamines such as Telfast or decongestant (Sudafed), as I get awful sinus and migraines due to allergies/sensitivities that would mean my day was a write-off without. Best advice: follow the directions of each medication, such as taking them with food or not to mix them with certain other drugs.

I keep all of these in a clear case I can easily slot into my Anello backpack that is extremely handy, light and easy to carry.

Hope this post has been helpful!

Love,

Lo xx

Surgery Nightmare

It’s been a week since my knee surgery, and I’ve been hiding like a cave troll because not only have I felt like one until now, but I also looked like one (however strangely didn’t smell like one?). It was my sixth surgery overall, and third one on my knees. And it was a chipping nightmare.

I’ve waited five years for this surgery, ever since I was attacked at an Amity Affliction gig in Melbourne in 2012, my knee dislocated for about an hour and a half before we realised the ambulance wasn’t coming and took a taxi to the hospital. They couldn’t pull me out of the cab because I was screaming so much, so they gave me a morphine whistle, and I don’t remember much after that. Also, I’d apparently snapped the medial quad in the process. Strangely, the surgeon decided that my left knee (previously dislocated and operated on) was in more need of surgery, so he opted to do that instead. Apart from a long recovery and a short-lived bout of hives from a recovery IV, there were no problems.

However.

I informed the anaesthetist that after my first knee surgery on the other knee in 2006, I’d had issues with my TMJ, possibly due to position/breathing tube during the surgery, and that I’d had the hive reaction to the IV after my last surgery. Although no one else could find a cause, he pinpointed in my file that it was due to morphine, so decided he’d concoct something that wouldn’t give me a reaction. I told him whatever he recommended, as he was the expert and had taken the time to call and do a pre-op meeting with me. The surgeon said it was a normal histamine reaction, and not an allergy.

As soon as I woke up in recovery, I immediately started screaming. I could feel every single incision point, and it was all burning, and my hands were tingling like crazy – like they were going to explode. The nurses told me to meditate and focus on my breathing and that the doctor would be there soon. Apparently he came an hour later, after telling my parents I’d be out in 40 minutes, and I remember him asking me the same questions and everyone being quiet and telling me I was just panicking and to breathe. I just kept apologising through tears for causing a fuss and scaring the other patients in the ward. After a while, I realised there was one nurse next to me, telling me to wake up and breathe because I’d fallen asleep after a huge cocktail of painkillers, and my breathing had slowed to 4 ‘resps’ per minute. Later, she took me to my fam, waiting in my room.

I had been in recovery for three hours.

When we got to the room, she explained what had happened, while I started feeling extremely hot, and my hands and arms felt again like they were going to explode with pins and needles, now spreading from finger tips to elbows. I was on so many medications that I couldn’t stay awake, even though I wanted so badly to tell them my perspective, but I just remember everyone putting cold packs and ice around my body. That night, I stayed awake after everyone had gone, with two drips of ketamine, fentanyl and oxycodone in my arm and heart-rate monitors every half an hour, annoying the nurses when I told them something wasn’t right or that I needed to go to the bathroom (the drips had to be unhooked and a rollator brought to me to get out of the bed), until they took the painkiller button away from me (that particular time I’d used it twice in an hour – it’s meant for every few minutes).

I stayed in the hospital two nights, saw the surgeon for one minute, during which he prescribed a double dose of painkillers to take home, and awaited the anaesthetist, who never showed. The pain was always there, and I had to confirm to the nurses, through sobs, my name – for the fifth time during that shift – in order to get the dose they were late with. When I got home, I realised they hadn’t given me any painkillers, just the long-acting ones for night, so I had to fight for that, after which they claimed I had ‘left’ it at the hospital, later that night.

Every day since, I’ve been battling with the pain, barely sleeping, barely able to eat, and throwing up every. single. day. I have horrendous nerve pain under the operated area that feels like hot needles being shoved into my skin, and bad pain and muscle spasms under the knee that, again, the painkillers only make me feel drowsy or disoriented for.

To be honest, it’s been one of the worst time of my life, not counting a slew of other horrible things that have happened in the past couple of days, unrelatedly. I thought I was well-prepared, but I guess things like these are impossible to anticipate. I can’t wait for this to be over and to move on with my life already!

UPDATE:

Almost a month on from surgery, I’m still battling nausea and vomiting almost a litre worth each time, but only when I eat meat and dairy?! So I’m basically an unwilling vegan at this point – or plant-based, I guess. The stitches have been taken out, and I’m getting around in a wheelchair with a leg extension and crutches, which have been really hard on my shoulders and wrists. I’m really trying to be positive, but at the same time I have to study for a supplementary exam, even though I was advised to take this semester off, and have three medical certificates. So I’ve been trying to cut down on painkillers to concentrate…it’s not been great.

All I want is to be able to walk by myself and get on with my life. It’s so frustrating and lonely, but I have another appointment with the surgeon in a week, so hopefully I’ll be able to start physio. I just wish everything wasn’t so difficult. Even things like showering are so draining and leave me with lasting pain, and my body feels twisted to the point that my back will hurt more than my knee. I feel awful asking people to get me this and that and being waited on, or making a trip out for a couple of hours into a major, planned out endeavour. If it sounds depressing, it’s because it is. I’m trying to remain positive; really, really trying, so I don’t want to even mention the majority of things. Maybe I’ll do an honest post on what to expect some day when I’m more removed from it, but right now it’s just too fresh and painful still.

Anyway, I’ll start posting more again from now on, about actually interesting topics, instead of my personal hardships!