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

Living Sick: Trying to be Normal with a Chronic Illness

Being ‘sick’ is a really difficult thing to get your head around. I don’t mean when you get sick, I mean living sick. It’s especially difficult when your family is either aggressively disbelieving or completely apathetic. You start to question everything you know about yourself and your life; whether you’ve been too easy on yourself, too weak, a hypochondriac, lazy…the list goes on, and on. I vaguely know one person outside of my family (yes, the same ones who don’t believe in it) who has EDS, and when you’ve spent your entire life trying to cover up and hide what you thought were embarrassing or unseemly traits, it’s difficult to ask for help.

I try to keep away from others in forums and whatnot who have similar situations to mine, for the same reason my family doesn’t want to hear about it: it’s an endless cycle of self-pity, irrational rants most likely due to medication or other issues, and an unwillingness to try overall. But mostly, it’s a community that will not be there when you do try to get better, or you try to get on with your day – then you lose that community. People are trying to make each other and themselves feel better, and there’s nothing wrong with that, but it’s not necessary to create an ‘other-ism’ of anyone who isn’t sick, or is on a different level than you, or is just trying to move on with their lives.

I don’t want to sit around all day complaining about why I have it tough and how the system is keeping me down, and never try. I have goals, dreams, aspirations, and they tower over most people’s, and I don’t think I should have a free ride because my body is essentially faulty – I want it to be the reason I succeed over what I could have potentially become. I’m already out of the ordinary, so I might as well make it in a positive way.

There are so many motivational voices online and in general at the moment, and I tend to agree with them: if you want to do better, you have to be better. You have to get up at 4am. You have to work your buns off. You have to get over your insecurities and your fears and you have to go for it, carpe diem and all that.

But what happens when all of that is your daily reality? The other day was unusual for me; I woke up at 5am and had enough time and energy to do my very light rehab exercises for the first time in three weeks, played with my puppy, uploaded a selfie for once, went to the library to study and ate healthily and cheaply – all before 9am. I felt fantastic. I never thought I’d love being up early! I’m so organised! I’ve done my makeup and styled my freshly washed hair! I can get so many things done today, starting with the three assignments I haven’t really started, due this week.

At 10am, I was done. I’d completely run out of steam one hour into a normal work day for most people, so I took advantage of the buffering-every-30-seconds internet and caught up on Game of Thrones…and then started typing this.

My reality right now is that I’m finishing a Bachelor degree I haven’t been able to do until my mid-twenties, living in my fiance’s parents house unable to move out because we’re not sure if we’ll have to move soon for said-fiance’s work, and we can’t afford it. I have no savings or belongings, apart from my laptop, some clothes and makeup, and I definitely won’t be able to attend one of my oldest and best friend’s wedding this year. My body has started rapidly deteriorating in the past two years, but my health insurance doesn’t want to cover the appointments or aids I need until I get an official diagnosis, which I can’t get for at least another month. I go to a library or uni every day, from morning until night, so that I can try and study outside of the house and be productive. All while trying to stay as healthy as possible, trying to design ways to get out of my current situation and to plan a wedding and family when we can afford it, as well as to try garner at least some financial security for said decisions. I can’t get a job at the moment because I never know when I’ll be able to do anything, and I’m due to have surgery which has a huge recovery time. Who wants to hire someone who goes above and beyond for three weeks, then crashes for two? Who has brain fog and is so clumsy or stiff that they can’t write or type – all at unforeseen times?

I want to have as normal a life as I possibly can – scratch that, I want to have the BEST life. Better than normal, better than most – because I have to. I refuse to live my life as a daily struggle. I don’t want to not be able to pick up my future kids or end up in a wheelchair. I want to climb mountains and swim oceans and cook dinner for my friends and family without having to sit on a chair while I get someone else to cut vegetables, and I don’t want to have to trade off what I can do so that I have the energy to shower some days.

Days are getting more frequent where I feel great for part of the day, and ready to faint, have too much pain or fatigue and have to lie down (but not be able to sleep, that would be too easy) for the rest. Times when things seem hopeless and there’s no way out. I keep telling myself it’ll just be a humbling story to tell my kids one day, because they won’t ever know what it’s like to live like this. But I can’t convince myself. I’ve been waiting for a very long time to be able to look back and feel happy and proud that I’ve crawled out of whatever has happened to me, but there’s no end in sight. I feel exhausted even contemplating what needs to come next to be able to do that one day.

I guess you could say this is one of the bad days, but I’m not even in pain today. I’m just tired. I’m so tired of being ‘on’ all the time in an effort to be normal, and I just can’t really seem to find the wherewithal or the energy to pretend.