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

Traveling Japan with EDS

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For such a small country, Japan makes the absolute best use of the tiny space it has. I see now why people keep returning after their first visit – there is just so much to see and do. After a packed two-week itinerary, I feel like I barely even scratched the surface of what there is to experience in Japan.

To tell the truth, the schedule my fiancé made up for us was a little overwhelming in the first few days, but I still wouldn’t trade it for any other way of doing it our first time. The next time we go though, I’ll definitely tweak some things to make allowances.

Here’s what you need to know:

1. No chairs – anywhere!

This was probably the most difficult aspect of Japan for me. I have problems with flat feet, hypermobile joints (especially knees) and back, and it was extremely hard to get used to. Luckily, the different public transport types are quite regular, so if there’s a train or bus that looks too crowded, give it a miss and get on the next one so you can give yourself a small rest. Failing that, stop at coffee shops or parks if you can, depending on the weather, as even many restaurants are standing area only in busy areas.

2. Medication is weak and expensive

Although my legs were in agony after the first day walking around DisneySea (totally worth it though!), I had used up all the painkillers I’d brought in the first couple of days, thinking I’d be able to buy while we were there. Huge mistake. Any painkillers we were able to find were weaker than a normal Panadol, and about $8 for a pack of 10 tablets O_O. Poor BB caught a nasty flu just before we left too, and nothing helped the whole time.

3. Onsen, onsen, onsen!

If you don’t have tattoos, go to a public onsen (yes, they do require you to be nude), which should be relatively cheap. If you’re like me however, and desperately want to experience it anyway (which turned out to be very necessary), book into a Ryokan with a private onsen in your room. Not only do you get the most comfortable bed you’ll ever sleep in, but you also get homemade Kaiseki dinner and breakfast. The mineral springs used for bathing have to be magical, I refuse to believe otherwise. After DisneySea, where my usual walking went from about 3,000 steps per day to 29,000, I recovered probably about 88%. This is in 4° Celsius snow, by the way, with Raynaud’s being a factor, after I had run out of painkillers. In every hotel we went to, they even had a bath in each room and provided free bath salts!

4. Combini & Vending Machines

You’re going to need a place to get rid of all your change, and vending machines are the best place. I’m obsessed with Coca-Cola’s Karada Meguri Cha Turmeric & Mint tea you can get most places, and there are heaps of other types of teas. I wish we had such a cheap and accessible selection in Australia! There are Oolongs, Green teas, Coffees (although the ones I tried were not great), as well as things like Pocari Sweat…don’t be put off by the name, I’m guessing it’s just a marker for a drink for when you’re exercising = sweat, because it’s like 100Plus if you’re familiar – a mild isotonic drink – and is helpful for replenishing salts for your aching muscles.

Combini…I’m actually in love. You could get all your meals here, your skincare, makeup, beauty collagen drinks – even some clothes! The best food I had in Japan was Combini onigiri, and I still think about them. It’s just so easy and cheap, and super fresh, unlike going to a crappy convenience store here, with old, suspicious pies in a heater. We frequently stocked up the night before with some dinner on the way back to our hotel rooms, and to make it easier to get going in the morning.  Also – the ‘Cell Roller’ in the slideshow was actually a cellulite roller, but it is SO good to roll out knots in muscles and loosen Ilio-tibial band from all the walking! I kept it in my bag and used it every time I got a chance to sit lol.

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5. Uniqlo Heattech & Heat Packs (for Winter)

Apart from my dumb decision not to bring much clothes, I didn’t have any adequate winter clothes, living on the Gold Coast. Uniqlo has surprisingly warm, not-bulky jackets and heat-trapping technology in their clothes, so I bought a down jacket that doesn’t make me look even chubbier than I am (yes!!!), and I wore it every day – albeit on top of 4-5 other layers of my thin summer wear. However, I really wouldn’t have survived without Daiso and Combini heat packs. Just open one up and stick it in your gloves, your pocket, there are ones that stick onto your clothes, and even ones to slip into your shoes. They last for 8 hours, and are my number one takeaway. I would not have been able to feel, let alone move my fingers if it weren’t for these things, and at about $1 for 6 or so, extremely worth it!

Uniqlo jacket, $2 Supre hat & $2 Daiso gloves. Good times.

Happy traveling!