Spending the next few days and possibly even the rest of the week in bed. I tried to push through last week, hoping the tightness and spasms in my lower back and sacrum subsided but unfortunately, there has been no progress. Strengthening is on hold for the time being and we’re trying IFT + manual work on my lower back during physiotherapy.

About six days ago, i fell right on my bum while taking a photo of a friend and since then, my already triggered lower back pain got much worse. Having a sublaxed tailbone and two slipped discs makes pain unbearable sometimes. Add injury or impact of any sort and that takes it to another level. My reaction was to get more physiotherapy done, tend to it using all my pain management techniques and increase my dose of analgesics and anti-inflammatories.

Yesterday, however, just as I was trying to get out of bed, I realised I couldn’t possibly let this continue. I had to finally pause and listen to my body. I need to provide it with a conducive environment to heal and recover. I now need to allow it time and give myself permission to rest without guilt. Starting today, I’m going to do just that. I’ll work on my coaching coursework and do what is possible from my bed, pacing and resting when necessary. It’s time to give it time.

Advertisements

Had a terrible experience at the hospital today – I had to wait for some 4 hours to complete a breath test, which required me to blow into a bag every one hour. I knew the procedure but little did I know that they won’t have a place for you to rest while you wait.

Perhaps next time I’ll have to ask in more detail, though I really thought that the full test will be carried out more professionally. I can’t be waiting around at the hospital, just sitting on a couch that looks comfortable to everyone else. When your spine is causing you pain which makes you wonder how you’re even alive (I know, doesn’t show on my face or the last few photos I posted) and you don’t get a place to just lie down, you want to cry. The thought of lying down on the floor did cross my mind a couple of times. The only reason I dumped that idea was because I would’ve had a difficult time standing right up again. If I can’t sit, walk for too long or stand much and I just need to lie down, are you seriously telling me that you don’t have a bed for me?

The only option I was given was to pay $50/hour for a bed at the A&E.

Thankfully, I am done with it and I’m back home resting in my own bed. I’m looking forward to my Physiotherapy session later – I don’t think I need anything more than that at this point in my life. The last thing I want is for today’s experience to get me bedbound again for more days to come. It’s time to rest up, recover and try to get back on my feet again by this evening. So glad that I had the energy to get through last night with my friends – couldn’t have asked for a better evening 🙏🏼✨

Lots of love,

MD

Pocari 

You don’t really need to sweat to need Pocari sweat. For some of us, just living and dealing with a body that is different needs a lot more energy than one could imagine.

In some ways, we’re always hiking up mental and emotional mountains, taking on non-existent physical marathons or triathlons  and working out ways to manage limitations. Every bit our existence requires tremendous effort to simply not fall apart.

If I were to try and put it in other words, living with an illness like HMS/EDS feels like you’re doing a full-time job seven days a week 24 hours a day or babysitting a child (which is nothing but your own body) every minute of your life (okay, you don’t get a proper rest either) Now imagine  having to do either + experience debilitating pain.

Anyone could do with more isotonic drinks after that. I usually opt for coconut water, Pocari sweat or 100 Plus Edge. Coconut water is always my first choice, unless I just want a change. 

P.S. Holding up a 2L bottle was a bad bad bad idea. Please do not even try if you’ve got a wobbly wrist because I do and I messed up.