Update

Hi all,

I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant.  My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.

This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.

There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.

For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.

On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.

I hope everyone’s doing fine.

In case I’m not around much, Happy June! ❤️

Love,

Md

P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity.  If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.

#chronicillness

It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.

Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.

My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.

What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.

Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷

Pan Roasted Tobasco Ginger Chicken 

Attempting to eat more protein (I miss my vegetables!), that too with only limited ingredients and condiments has been such a task. I’m going fine though. What sucks big time is that I’m bedridden and so blood exhausted every minute of my day that I’m finding it hard to get my experimental self to work. If I can’t even stand, forget trying to get creative with food. At the moment, my survival mode is on. I just need enough food to get through my day, to take all my pain and daily medications + extra antibiotics and survive. Generally speaking, I’m doing fine. Doing my best.

Update: Week 1 of 2017

It’s been seven days now and I’m still waiting for this back flare up to calm down. I’m mostly bedridden at the moment, getting out of bed only if it’s absolutely necessary. I haven’t gone for Pilates or even stepped out for my daily walks. I also had a pretty bad brain-fog which lasted for a couple of  days.

All in all, it feels like 2017 hasn’t quite begun for me and I’m still stuck in 2016, dealing with the consequences of stepping out for a light dinner with a couple of friends on New Year’s Eve. We got stuck in a bad traffic jam the same night and ended up feeling hungry at the strike of mindnight, which then made us want to get some food by the beach before finally heading home.

I’m always putting my health first and never feel the need to be out or go crazy or involve myself in anything just because that’s normal for people. So once in a rare while, I don’t mind *celebrating an occasion, even if it involves a bit more of my physical energy and dealing with its consequences for a while. Even then – it’s usually pretty low key and I love that.

* if you’re chronically sick and your days revolve around health and constant figuring out/surviving, the more reasons you find to celebrate life in your own ways, the better it is. You don’t need to try and act normal or do it the way “normal” people do it. Just find what works for you and live your kind of normal to its best.

My treatment-diet for SIBO has finally started and I will be starting another round of antibiotics (one dose did nothing for me) next week on. The low FODMAP diet,as a treatment for SIBO, can become rather restrictive/limiting in terms of your food options (especially when you mostly make healthy choices anyway) and can end up frustrating most people on it. It requires you to plan your meals down to each ingredient. Somehow, at least at this point, I’m looking at it as yet another opportunity to further my knowledge in nutrition and to get really creative and experimental with low FODMAPs.

I can be quite disciplined and patient when it comes to my health so I’m not expecting too many issues at this point.  However, I might have to include more meat in my meals and I’m not much of a meat-eater. Let’s see how that goes for me. I think I’m going to miss dark chocolate and chai the most!

I’m trying to keep my meals simply and easy to preprare so they don’t take away too much of my mental and physical energy unnecessarily. I do however want to be capable of preparing quick meals for myself as far as possible. I’ll try to share some of my creations as and when I’m able to.

That’s all for now!

Let’s not break now 

I’ve had a fantastic holiday up till now.

I’m pretty sure that my next few days will be awesome too. I can sense that my body is tired from trying to hold itself up but I’m still quite excited about the last few days I’ve got in India.

After three years of having no holiday, a break was definitely needed. I’m glad I got some time away from my routine, to let my hair down a little and re-look at my priorities.

All that said, anything in excess is a sign of imbalance and nothing in excess has ever proven to be good for anyone. Seeking balance has helped me learn to manage this illness and I now see the scale tipping in one direction.

So, before this break (intended to be relaxing) starts to “break” me down physically, I believe it’s time for me to return and channel all my focus and energy towards things that keep me going.

After all, I’ve got a long way to go in this body.

Back to tending to my loose shoulders, inflamed neck, cramped calf, flared up back and wobbly knee caps. Good day, everyone! 💕Love to all.

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