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 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