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सेलfie/LE/

सेलfie/LE/ because, why not. Haven’t gotten a chance to really post much on here as my trip has been rather hectic and I haven’t been feeling too well. It’s my third week of antibiotics and fifth week of stronger muscle relaxants and I wish I could say I was doing better.

Nausea and migraine on top of aches and pains and wobbly joints feels like shit because there’s more that needs to be done over the next few weeks and I’m forced to take things slower yet again. It’s a challenge to be sick and do things ‘normal’ people can so easily manage so I try to break down bigger tasks into smaller, more achievable steps and get through them one thing at a time.

Well, I could’ve been a lot worse at this point, so all in all, I think I’m doing quite okay.

Look back…

If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.

 

 

#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust

#2013

It’s been four years since this photo and yet I get goosebumps just thinking about where I was at, both physically and mentally.

I was falling #sick with a cold or a stomach flu every other week, reacting to medicines which were supposed to help, afraid to be alone in my own bedroom, finding it hard to eat, needing help to wash my hair and sometimes even to brush my teeth, hating on my body for being fragile and weak, struggling to protect myself from people, fighting with school because they had no policies in place for people with medical issues, crying myself to bed every night, falling asleep with a strange emptiness in my #heart, waking up to feeling suffocated, hating on my creativity because I couldn’t pursue it the way I wanted to, feeling like every day was an absolute drag… I was claustrophobic in my own #body and #mind.

I wonder if this photo says any of that.

2013 was the year I knew I was done with everyone and everything around, including myself. Something needed to shift and I didn’t know what or how. All I knew was that life couldn’t possibly feel the way it did. Despite feeling like a hostage to my own #existence, there was a glimmer of #hope, a constant knowing that nothing was going to change until I decided to step up to where #life was heading. Stepping up at that point meant pausing and for once allowing myself to let it all sink in. Nothing was going to be anything like I had once imagined and I had to come to terms with that. I couldn’t distract or push myself anymore and I felt horrible. Who thinks about pausing/stopping at 23, right?

The thing is, some of us reach a point in our lives when we are faced with circumstances so real we simply can’t look away from them. Greater things are at play and our personal plans and effort make no sense. Life keeps finding ways to force us to look at what’s being presented and leaves us with two choices – to keep #suffering by avoiding pain OR to acknowledge pain and learn to #rise from there. #trust #acceptance #health #mentalhealth #pause #rest #recover

Looking back, I suppose there were things I had in 2013 which lead me to be where I’m at today. The daily struggle and fight have definitely added to all that I have become as a person and in some ways I’m grateful for it (not for the fight but for what came out of it). Of course, gratitude seemed like the last thing on my mind at that point in time because I was in this terribly dark space. Practicing and expressing gratitude, learning to accept whole and broken parts of me and making choices that honour my health (both mental + physical) has taken time and conscious work. I still have rough days but I’ve made peace with the fact that harder days are part and parcel of learning to live with a chronic illness. Today, I know better than ever before that while life is capable of giving you 5 reasons to fear, hate, complain, it will give you at least three reasons to trust, love and grow.

Days of nothing but exhaustion.

People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,

the shortest response i have is:

“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”

//Manasi D

Measured steps

My back is in a terrible shape again. I haven’t been able to get out of my bed since last morrning, after my short walk. It’s been spasming pretty badly, making it difficult to rest.

Clearly, it can’t handle much activity at the moment. And, that’s fine too. It’s only understandable.

Last 5 days or so have been rather busy (strenuous for my body) with hospital visits and I also attempted walking a small distance yesterday and day before. Obviously, it doesn’t feel great seeing that my back has lost so much strength due to a flare up at the start of this year.

I haven’t fully recovered yet and I can tell that recovery is going to take MUCH long than what I first anticipated. In fact, somewhere after 4 months of being bedridden, I stopped wondering when I’d be okay because it was only making things harder. I was doing everything right, putting all the tools I’ve learned over last so many years to use, resting as much as possible and yet my back wasn’t improving.

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Once again, I realized that the only thing in my control is/was my response. I was doing my very best. My body was going to take its time to heal and I couldn’t magically put my back together and make it okay. That’s not how it works :) All I could do was continue doing things that could potentially help my back recover. I figured I’d rather accept the new baseline, the present, and learn to work around it.

Comparing myself to last year wasn’t helping just like comparing myself to pre-illness didn’t help when I was learning to accept my new reality. It made me feel stuck. I’m now at a point where even if I accidentally happen to push it, I might get bedridden all over again and I’d hate for that to happen.

Learning to work around new a baselines (and we may have many new ones in future since it’s a chronic illness) is the only way forward. Unfortunately, you take a risk each time you attempt taking a small step forward — you can’t fully be sure it won’t hurt you and you won’t know till you try. #chronicillness

See where you’re at, listen to your body and take a measured step forward. If it works, be patient and continue to take slow, measured steps. If it doesn’t, be EXTRA gentle with yourself — rest, adapt and try all over again.

(Dis)ability and In(Dependency)


Last few days highlighted my disability and helplessness in ways I have and continue to learn and make peace with.

I fell at a shopping mall and hurt my knee (falling down or getting into an accident is a big nightmare from someone like me), I saw a beautiful cat get hit by a car and realized how I couldn’t do much to save her only due to my physical limitations (post coming up) and the emotional pain of partial dependency and coming to terms with it you when you’re chronically ill (none of us choose dependency as option one. We didn’t consciously ask to be ill or unhealthy. And while we find ways to adapt and make peace with it because health is wealth, look at lessons and opportunities to evolve, it isn’t an easy process. Being sick is hard even if we figure out ways to make it slightly more tolerable. It isn’t easy knowing your strengths, your capability, your personality and attitude, your education, your drive and passion and then having to accept some amount of dependency due to physical limitations/dis(abilities). Do not get me wrong – I don’t regret having made certain choices and decisions, all I’m saying is that these were some of the most difficult and brave decisions I’ve made in favour of my health and I’m glad I did. I don’t know where I’d have been today had I not followed my guidance, despite all the external resistance. Just because something is right for you, doesn’t mean that it will be comfortable to come to terms with. However, you feel at peace deep within knowing you’ve honoured your health/stood up for yourself) came up for me through a rather time-wise unexpected, but intuitively anticipated news.

I won’t say anymore.

For now, I just need to be present and allow these emotions to run through me. It’s okay to have all kinds of ‘feels’ and feel ridiculously uncomfortable sometimes. Trust the process even if it seems unbearable for there is light within you and at the end of the tunnel. Feeling is being human, feeling is being alive. Let yourself have the time to process/work through emotions and once you’re ready, stand up, show up and take necessary actions to move forward.