How I try to cope with the unpredictable nature of my health

How I try to cope with the unpredictable nature of my health (8.5 years and counting)

1. I make all decisions related to my health on my own because no one else knows my body better. Patient empowerment is so important when dealing with a chronic illness.

2. I trust that my body will respond if I give it enough time and care. I need to allow it time + listen to it closely.

3. I choose to work on acceptance rather than fight the inevitable. It allows me to work with my circumstances from a space of love rather than hate.

4. I acknowledge limitations, suffering and pain and put more focus on opportunities, dealing with emotions and recovery.

5. I choose faith over fear; vulnerability when necessary over strength all the time (it can be pretty unrealistic to be strong all the time).

6. I protect my energy. I’ve learned to say more ‘no’ and less ‘yes’ both politely and affirmatively.

7. I do not track my progress based on what I can do in relation to others.

8. I keep myself updated about the condition + advancements in science. This way, I’m able to make informed and choices.

9. I try to find miracles on a day to day basis. It keeps my hope going for something greater.

10. I am grateful for what I have and who I have around for me (Quality > quantity, as far as possible).

11. I celebrate every little progress I make. Sometimes getting out of bed is progress too.

12. I make flexible plans and routine. Self-care is always at the top of the list.

13. I’m honest about my health with myself and people

14. I do not ask “Why me?” anymore. That question leads to a downward spiral and takes you straight into a shithole.

15. I look at my health as just one part of my experience on this planet. It’s not my health which defines who I am as a person; it’s how I respond to it that does. I can’t just rid my body of the illness but I can definitely work on giving it less power.

I end up having to work with my body as if I’m working with a child. It takes lots of time, effort, love, compassion and consistent practise.

It’s not easy but every response is worth it 💗

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Three years back

Just about three years back, probably towards the middle of a very #dark phase of hating my body, I swore upon myself to never travel until I felt #ready. Unfortunately, I didn’t believe I’d ever feel ready enough to live in this body or #travel with it. While most people of my age were getting excited about traveling, I was feeling trapped in a body that only looked normal.

There came a point where I didn’t want anything more but to be able to look after myself, #trust my body again and be okay with where I was at. It was such a #challenge because there was absolutely nothing trustworthy about my body. I realized I could care less about seeing the world or chasing goals if I couldn’t even wash my own hair or walk around my own house.

I left a part of my past behind, took a couple of major leaps of faith and started living on my own. I decided to create a routine which provided me with the kind of stability that my body lacked; that my #environment lacked too. The idea was to build myself up again, to become comfortable with the cards I was dealt , to #empower myself and honour my #health. I had to re-imagine a life that is different and also learn to believe that different doesn’t mean bad.

After three years of the very same #routine and #lifestyle – Physiotherapy, Pilates, allopathic medicines, complimentary therapies, lots of positive-self talk, re-connecting with my creative self, allowing myself to cry and experience grief fully, accepting limitations, fighting for instead of against my body, letting go of people, places and situations which didn’t serve my new self anymore, feeding myself nourishing food, learning to find reasons to be grateful — and something shifted within me. I suddenly craved a #change, a mini #break from this routine that I had created for myself. Some time away from it to see how far I’ve come.

I’ve got more information now. I can see the #progress I’ve made and there’s more to learn. To be honest, I don’t know when I’d feel ready to travel again and this time it doesn’t matter at all. It doesn’t make me feel any less or more because I believe time will come when it must.

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.

 

Day six #bedbound: Back is still at 8/10. Burning. Aching. Spasming. This pain won’t let you rest. You can’t recover without rest. It’s a never-ending, vicious cycle. It hurts so bad that you wish you could dismantle yourself and put your back away for a while. But you can’t. There’s absolutely nothing to make it any better. All you can do is what you always do – listen to the pain, tend to it and relax into being where you are at. Stay present. 

#Spoonielife

You know you’re a spoonie when you wear your pretty little black dress to bed and feel okay about it.

Alright, jokes apart, it’s my fifth day in bed and my back is still spasming. I’m okay to lie down or stand up for a bit but I just can’t sit or walk around as yet. Yesterday’s Physiotherapy and dry needling session gave me some relief and now my muscles are tight and pretty much knotting up all over again! I’ve got a couple more days before my next session and must manage till then. Already looking forward to it.

Happy resting, my dear spoonies!

💕

I’ve been in bed pretty much since Friday night, tending to my insanely flared up lower back and hoping I feel good enough before Monday. I need to get through two whole days before my next Physiotherapy session! TWO. FULL.DAYS.

Today’s top pain management tools :

1.Ice packs

2.Trigger ball

3.Painkillers (unfortunately, yes)

💖

Update : MRI Enterography [1]

On Tuesday, I was at the hospital  from 9:30 am all the way till about 5:00pm to get a couple of  tests done – MRI Enterography and Neck Ultrasound. I was given 45 minutes to down 3 bottles of 450ml each of barium sulphate, a slippery, kind of oily, thick but sort of translucent, dull white liquid. I thought I was doing pretty fine until after about 1.5 bottles, after which, each sip only got harder to swallow. I managed alright, I think. I’ve had worse tasting medicines before. It did seem like I was high on barium sulphate for sometime though.

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The standard procedure for MRI Enterography involves also having a contrast liquid running in your system. It highlights abnormalities and inflammation much clearly and hence is highly recommended. This time round too, like once back in the past, my experience with having a contrast running in me wasn’t exactly pleasant. They struggled to find my veins, thought my veins were too thin, and practically fought to properly insert the needle. After about three failed attempts on my left hand, they tried the same on my right and finally managed to get the contrast going.

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If I were to sum up my experience at the Radiology Department yesterday, I would say it was a total adventure, with prolonged waiting time and misleading information from every person we spoke to. They first got the timing all mixed up and expected us to reach earleir. Then a person told me I might get a diarrhoea after barium sulphate, another said nope, not at all. Another person said constrast was required and someone else said it depends on us. And, my reports, which were supposed to be ready within an hour took almost two hours to be ready instead. Total mess.

After a point, everything got really annoying and I couldn’t wait to get home. Exhaustion and pain simply got worse over the 7.5 hours of being out. I had to collect my daily medicines from another hospital nearby too. Thankfully, dad was around with me through the day.

So, it turns out that my MRI Enterography was normal, no abnormalities in my major organs – so that’s something to celebrate! However, the key question remains – if everything is normal, why am I experiencing all these abnormal sysmtoms?

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Usual answer – we don’t know yet and we must take it one step at a time. I’d be lying if I said it doesn’t get frustrating; you kind of want to know what it is but you also don’t want it to be too serious. It’s then when you realise that you don’t have much of a control, so, you take it one step at a time. One day at a time. One test/scan at a time.

To be continued…


Whoever told mankind that being strong involved no tears

 clearly wasn’t aware of any chronic illness.

It’s been a while since I teared up thinking about my health. I somehow don’t cry much about my health anymore. I realize I’m doing all I can and that’s enough for me to not feel like total shit about my health.

But today was different. It was random. Unexpected.

I just burst into tears on my uber ride back home from the hospital.I had a lot of thoughts running through my mind. And a pathetically sad song playing on my iPhone.

Now that I think about it, I know I just got overwhelmed looking at another bag full of medicines. A new set again, for these new symptoms which won’t go away. The medical bills. The time. The energy expenditure. The fatigue. The pain.

It can get to you at times. It really can.

It’s a constant dance between your present and future. Every choice, every decision matters. You wake up every day making a choice to get through the day. You go to bed knowing you’ve done your best, say a little thank you, and fall asleep. And sometimes you stay up because your body won’t let you sleep.

Don’t get me wrong. I’m not sharing this because I need pity (doesn’t help) and nor is it that I’m so devastated and can’t continue with life. I just wish to share two things –

1. Be grateful for your health if it’s still on your side. Not because it could be worse, but because you are okay today. In this very moment. Choose health, always.

2. It’s absolutely okay to cry. To feel like utter crap. To grieve over what’s gone. To worry, to feel upset, to feel annoyed or frustrated. It’s all okay. All normal. Let yourself have those emotions. Cry. Write. Yell. Speak with the ones who are on your side. Hug them. Whatever helps you process that emotion, do it. Then, once you’re better, remind yourself that you’ve got this. You’ve always done it right and you know what to do. Trust your body. No matter what comes. Honour your health. You’re on the same team.

Love,

MD

❤︎

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