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

Opening Up

I’ve spent my whole life hiding parts of myself and censoring parts of my personality.

These days, I’m finally getting to the point where I’m able to start managing things properly. However, my twenties have been filled with steps and missteps towards figuring out what’s ‘wrong’ with me, and it’s been a hard, frustrating, painful, embarrassing and exhausting process. A few years ago, for example, I missed one of my best friend’s 21st because I had a migraine that almost caused me to crash my car, to not be able to sleep or sit up or see properly and seriously consider bashing myself in the head with a baseball bat so that I could pass out and get some relief. It was actually caused by a sensitivity to sulphites in one cider I had drunk the night before, coupled with a twisted cervical vertebra in my neck. But everyone thought I was just hungover, and got really, really pissed at me. I was pissed at myself, too, and so embarrassed. I felt like the worst person in the world, that it was my fault that these things seemed to keep happening at the absolute worst times. It wasn’t the first time, and it wouldn’t be the last. This is just one example of a hundred different things I’m realising have had a common underlying cause the whole time.

Now when I drink – if I drink – I take anti-histamines and probiotics just in case, because I don’t know what will set a reaction off, and I’ve tentatively fixed my neck after a year of regular specialist treatment. But that’s taken several years to begin figuring out, and I don’t think I’ve been able to repair the damage in reputation or relationships in the meantime. I’m still known as being unreliable, flaky, weird and a hypochondriac.

Which brings me to the point of this post: I’m done hiding. I’m over being embarrassed of times where I have a reaction to something, or have to be extra careful with my energy, or have to wear a brace or strap my joints, only to be fine and brush it off the next time I see someone. It may not be the worst thing about being sick, but the social impact becomes just as debilitating, because there is just no way to tell what will happen day to day, and it’s difficult for even those closest to me to understand. I’ve touched on how my Hypermobile Ehlers-Danlos Syndrome affects social stuff previously, but this is a clearer explanation.

Usually I’d forgo the medical aid or treatment I need, or close off an entire week to be able to go to a social outing or function so that I can appear ‘perfect’ or even just normal. When I have a bad day or slew of days, I’ll somehow be embarrassed?? Like; ‘Oh oops, hahah! Not sure what that was about, but let’s get on with it shall we? Please ignore that!’. I’m learning the hard way that that’s just not how it’s going to work, and I can’t spend half of my life hiding and pretending I wasn’t sick or in bad shape sometimes, that I’m slow to react or quiet because my energy has literally run out. Although I’d like to always be cheerful and chirpy, sometimes I’m just exhausted. I’m so exhausted I can’t even muster up the brain power to realise I might be less than enthusiastic about something, or get upset about something trivial because I’m still fighting needing to rest instead of what I think I should be able to do.

It’s not some lame, cliché sob story, though. When I have a ‘good’ day, I’m great! I feel like I can take on the entire world, meal prep for a month, clean the whole house, outrun my naughty dog, swim 100 laps, outdrink all my friends and stay up dancing all night. But I know now if I do that, I’ll crash really hard, for several days. I’m finding the sweet spot between being a hermit and being the life of every impulsive party I want to throw when I feel like I even have a bit of focus and energy.

So basically, I’m asking for some understanding. Maybe I have some ‘nerdy’ or lame hobbies – it’s because I don’t have the energy most of the time to do anything more strenuous, but I still want to enjoy myself when I have some downtime. Sometimes you’ll see me sitting down at every opportunity, carrying a first aid kit in a chunky backpack, never wearing heels, or have mobility or stability aids, and sometimes you’ll see me hiking a mountain or eating my weight in Korean chicken and beer. It’s just the nature of the illness, but I’m starting to realise it doesn’t mean I have to politely excuse myself from my own life. I mean, that’s just ridiculous. If I never get any better than how I am at this point, I have to learn to be ok with that and be happy regardless.

I’ve tried so many different career choices, study choices, workplaces and lifestyles, and it’s only now that I’m able to figure out what actually works. I can’t shake the feeling that I’m so behind everyone else, but at the same time, I wouldn’t trade all the experience and wisdom of every ‘mistake’ or wrong direction I’ve gone in. I feel like the last year has seen me reborn – I just have all the knowledge of my past lives to help me out going forward.

I’ll be sharing my true self from now on, instead of some curated online image. No longer will I be cutting myself off from my own interests because they only fit with the ‘good’ part or the ‘sick’ part of my personality. It’s pretty terrifying, but social media in particular is going to be my way of sharing my actual personality, that people can take or leave as it suits them, but hopefully have a positive impact to myself and others going through similar issues. That just because it’s different, it’s still a kind of normal, and now it’s my normal.

I love singing, makeup, beauty, skincare, haircare, fashion, fantasy video games, Youtube tutorials and interesting trivia, cute animals, history, mythology, languages and metalinguistics, UFC, travel, technological advances, dreaming of the future, writing lists, architecture, interior design, curating music, designing my future dream house/wedding/travel/lifestyle, scary movies, funny tv shows, Korean dramas, literally all kinds of music (except country), anthropology, the origin of language and words, Buddhism, philosophy, nutrition, cooking, surreal pop art, pre-raphaelite romanticism, drawing, painting, sunsets, dawn, the moon, swimming, the horizon. I believe in mind over matter, and I’m just done caring about what’s ‘good enough’ or not! I have so much love and ideas and creativity to spend and share on so many different things and interests and I want to be able to do that with everyone who comes into my orbit.

I’ve learned enough to be ok with not being perfect and not being some impressive amazing person, and I can finally open myself up to things I actually want to do, instead of pretending to fit in with what I believed to be expected of me.