Day 17: Bedbound

In the last 17 days, I’ve had to change and cancel my plans and come to terms with my present reality once again. It’s never easy having to adapt to the ever-changing nature of your chronic illness but you get better at it. It bothers your less (in general) and when it bothers your too much, you learn how to manage your thoughts and emotions around it without beating yourself up each time.

I’ve had to postpone the starting date of my part-time job, stop working on the classes I had plans of teaching, take a break from Pilates and my daily walks, ask for help with groceries and meals, all so that my body gets the rest it deserves, the space it needs to just be.

What I have been doing instead is tending to my back as much as I can and very religiously sticking to my bedtime and nap-time. I’ve been massaging my back with certain oils that help me, using lots of hot packs, doing very light stretches, a bit of infrared therapy, going for physiotherapy, meditating, making small mandalas while in bed, reading up on the treatment-diet that I am on for SIBO, writing, and for most part of it, trying to be more present

As much as I’d like to do more, I can’t do more right now and that’s something I need to be okay with. I’ll do more when I can do more and for now, whatever I’m doing is enough. I’m going to continue giving my back the time it needs to recover. Once it’s better I’ll have to slowly build myself back to where I was before this crazy flare-up (or before I went to India.)

According to my Naturopath, my back could be taking longer to recover due to the SIBO treatment-diet I’m on. It seems that the treatment can induce a very strong detox process (which is needed for the treatment) in your body, which, if too aggressive can cause more inflammation in the existing areas of inflammation. I only hope what she thinks is true because quite honestly, my back is not a happy bunny right now. At all.

I hope things start to look a little more positive soon.

P.S. If you’re wondering what’s on my SIBO friendly “buddha bowl”:

  1. Boiled Beet root with Olive oil and Lime juice
  2. Stir-fry Spinach with Salt and Pepper
  3. Pan fried egg (I usually have it without the yolk)
  4. Olives
  5. Roasted Tobasco & Ginger Chicken
  6. Indian Spiced Zucchini

Pain and more

After spending close to seven years in all kinds of pain, I often find myself trying to think of the lessons behind the cards I’ve been dealt. I don’t ask any ‘why’ questions anymore, but I do ask a lot ‘what’ questions to myself.

“Why ME?” is the worst question one could ever ask.

“What can I do right now to help myself right now?” is better; more constructive.

Over the last so many years of experiencing such debilitating pain, the amount of awareness that I have around my body has definitely increased and is only increasing. I have now come to a conclusion that pain, apart from causing a lot of physical discomfort, is capable of either multiplying your suffering (mentally and thus physically – or the other way round too), or helping you seek answers for yourself.
Pain can …

1. Fill you with grief, regret and sometimes even a sense of defeat, if you let it take you back into the past. All the frustration and agitation comes back if you haven’t yet healed from it (haven’t dealt with it) and from there, you are not just dealing with your current physical pain, but also the mental and emotional suffering it could possibly create. It usually happens because we beat ourselves up for what is gone. We all feel defeated at times, but if you let it, this feeling can make your life a living hell.

2. It can create a lot of uncertainty, anxiety and fear and practically paralyze you if you let it push you too much into the future. All the things you can’t control start to control you and you begin to feel helpless. You’d find yourself constantly wanting to do more than you can, wanting to get better right away, find a fix/cure etc. You’d also then worry about your personal expectations and those of others and feel trapped in your body.

3. OR, if you decide to use it in a more productive way, it can help to ground you into the present moment and find ways to help yourself. When you find that your mind is going haywire, using your body as a tool to stay present works well. In this case, you are choosing to listen to pain, instead of listening to your mind about the past or the future. Choosing to listen to pain requires you to take a very non-judgemental approach to what you’re experiencing. This way, you’re letting your body feel safe and you’re just being a close friend. It is  when you reazlie that you can’t fix what is gone and that in a state of agonizing pain, you can’t even do much about the future, that you understand the importance of just being present.

I wish to skip the first two points for today. We could spend a lifetime talking about how crappy we feel about the things we once could do and can’t do anymore and we can feel crappier thinking about things we might never be able to do. We might even feel all the more worse if we give in to the helplessness and allow ourselves to feel like total victims – as though there’s something out there trying to punish us and everything is happening to us.

Let’s talk about the point #3 instead – how can you use pain to become more present?

Well, you simply let it be. Yes, you read it right – you let the pain be, and you be too. Just be. Just simply being might sound like the most complicated practice but if we manage to work with our mind and body to at times simply be, we’re able to attend to our needs quicker and more efficiently. Just simply being requires us to be aware of our experience and to let ourself have it. I don’t try to chase pain out of my body when I’m trying to simply be – if I could do that, I would’ve done it long back!

What generally helps me is to do a body awareness meditation. It’s great to get into a space of meditation but honestly, at times (due to intense pain) I just can’t and I don’t even try. Instead, I focus on slowing down and breathing, and let it happen on its own.

 I lie down comfortably in bed, close my eyes and start to breathe into my body. It’s hard to relax, really, but when I’m a tiny bit calmer, I choose one particular spot that’s in pain and try to only focus all my attention on that spot. I’ve got nine unstable joints and they each want attention all at the same time. It’s a mess! Even then, I attempt to focus on just a few points or on my body as a whole. Whatever works is fine.

Pain definitely brings up emotions for all of us and that’s okay and only normal that it does. These emotions need to run through our system and out of it in order for us to accept your body for what it is. It has taken me so long to be okay with having a body that is in pain all the time and even then, there are times when I find it hard and must work on listening to my body closely. When we choose to listen to pain, we have to be open to receiving all kinds of feedback – logical actions that would help us + some uncomfortable emotions that can guide us later. It’s helpful to make a mental note of it.

What is necessary when you’re listening to pain is to stay clear of any hypercritical comments. Remember the close friend you’re trying to be for your body? No close friend would give you a bad time because you’re in pain, right? You have to keep telling yourself that you’re only concerned with the present and that you only need to attend to the needs of your body in this moment. Everything else will fall together once your body feels better. You’ll just have to trust that you’d be able to take care of everything else later.

(Ya okay, all of this is easier said than done. But I try too, and that’s all we can do).

Keep asking your body if there is anything you can do to help relieve the pain and support its healing process. When you focus more and more onto the pain points, you’d find yourself having a mini conversation with your body. At this point, you might even wonder if it’s really your body responding or if it’s your mind, but trust me, it doesn’t matter as long as it feels like some guidance – and to me, guidance is anything that feels right deep within. More right than those useless, noisy thoughts floating on the surface, you know?

Your body might ask for you to get hot packs, or maybe cold packs. Or it might say it needs a massage, maybe a particular oil or medication, or maybe extra sleep or maybe a hot soak/shower, it might say “Ok! This is it. Cancel all plans.”, or it may ask you to skip/quit your part-time job, find a new place, leave a toxic relationship, or it might YELL that you need medical help RIGHT NOW… trust me, it will tell you what it needs in that point. Some things you can work on right away and some you have to work towards.

The next step is to respond to its needs. You might find your mind wandering again, into the past or the future, but each time this happens, let pain serve as a reminder to be present and to attend to it. Let it be a reminder for you to prioritize health and wellbeing over everything else.

From experience, I first do all the things that I know my body would like me to, and then if needed, I literally spend my day in bed if that is really all I can do. Every now and then, I close my eyes and I ask myself what it is that I need in that moment, because every next ‘moment’ is different from the previous. At every stage, I try to provide some confidence to my body that I am here to take care of its needs. If I require help in helping my body, I ask for it. There need not be any shame/guilt around asking for help.

Whenever I am able to, I journal out my entire experience. There’s a great amount of guidance behind our emotions too, and we need it in order to make any kind of changes. Writing these things down allows me to work on them later, or whenever I feel the time is right. In this way, I am able to better process and respond to the situation. Sometimes being in pain AND dealing with the emotional aspect can get too much to handle, so I take it one step at a time. Then there are times when I just want to cry in pain and hey, that’s allowed too you know! :)

Right now, in this very moment, my body is asking me to stop typing before my arms and wrist slip off. I’m going off to get hot packs for both my shoulders and ice pack for my back!

And, oh, before I go, here’s a quote I came across recently:

“Health is a crown that the healthy wear, but only the sick can see it.” – Imam Shafi’ee

Stay well and have a wonderful week ahead!

❤︎

Be here today, be here NOW

The following video got me writing today’s blogpost. I hope you guys are able to view the video but if not, look for “Be grateful for what you have” video by Bright Side on YouTube. I’m guessing you’d find it there.

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I wasn’t expecting the end to be the way it is.

It made me feel a little heavy-hearted, because I’m aware of how some stories of EDS, chronic or rare illnesses can end. Within that moment of sudden sadness and mixed emotions, I saw the importance of staying present. I’m sure that had I not brought my attention back to the present, I’d probably have drowned in fear and forgotten that I still have today to live, to do what I can do with what I’ve got and to be grateful for all of it, not because I might not have it one day but because I have it today.

I’ve noticed, being grateful for something because you might not have it someday also to some extent, comes from the underlying fear; fear of not having enough or something. I find that I’m calmer, more capable of dealing with things and certainly happier if I show gratitude for what I have today, simply for having it today.

People ask me all kinds of questions, some questions being far more sensitive than the others and some I only have one common answer for, “I don’t have an answer yet.” A lot of them simply want to know what future holds for someone with HMS- EDS.

“What if you end up on a wheelchair?”

“What about having a family? Will your body be able to handle pregnancy?”

“Your illness makes you so high-maintenance. All the cab rides, daily medicines, Pilates and physiotherapy etc etc. How do you plan to continue paying for it all throughout life?”

“What if you have to depend on someone for the rest of your life?”

To some questions, I’ve got answers which will change over time. That’s because there is a factual and a personal component to them, both of which can change a situation (or an answer) to a large extent. Some of these questions are extremely valid, but if I were to be very honest, all I can say is that as a patient, there is only so much you can do. 

Most of the time, those patients who come across as brave or courageous are in fact the ones who’ve thought about it all and have then made a choice to come back to the present because they also realize that they themselves do not have a complete answer. We are all aware of the uncertainty but we choose to become comfortable with not knowing enough. Because we don’t.

No one does.

Over the years, my body has taught me the importance of doing everything I possibly can today and letting go at the same time, and seeing how life unfolds from there. I’ve had to work on becoming alright with my disability and work with my ability to do what I can do, and to wake up every morning and get through the day. For the kind of workaholic and detailed planner that I used to be, and for the kind of environment I grew up in, it has taken a lot of effort to channel my energy into the present more than the future and to come to terms with the fact that certain things are beyond our control.

You see, that is why, it is so crucial for someone with a strange illness (especially) to attempt to find that balance between preparing enough for the future and staying true to the situation today, both at the same time… to be aware of what the future holds and to live every moment today has to offer, to the fullest. Anything can happen a year (or years) from now, a month from now, a week from now, a day from now or even an hour from now, right?

Thanks for reading

Love,

Manasi Dalvi

❤︎

6 years ago 

I could lift my arms up, to any height, hold them up for as long as I wanted to and I didn’t feel any sort of pain or discomfort


Well, I could stand for hours  ay Design school, get home and swim, hang out with my friends, work on my projects and not have to worry about not being able to get out of bed the next day


And of course, I could just bend at my knees  easily as and when, for as long as I want 

That’s Me.
Six years ago when my left shoulder was just a “one-off thing”, my health was already showing me signs but we thought they weren’t a big deal, I was still heading on the path of becoming an Interior Architect, teaching and choreographing Bollywood dance, swimming and kayaking used to make me feel alive, goals and success had a different definition altogether and I used to think making everyone else happy was the key to my happiness.I didn’t know what it was to be in pain twenty-four/seven. I can’t believe life had to put in so much effort to slow me down :)  SO much had to fall apart and indirectly fall in place for me to be where I am today – I’m able to look back and think and see the lessons I’ve learnt, the choices and decisions I’ve made, the friends who’ve stayed, the people I’ve come across in this mad journey, those who have inspired me to continue and have been inspired by me and I actually feel alright with how life has turned out. There’s still lots that needs to fall in place (and probably fall apart too) but I’ve realized there’s no race to run and that even if there is, it’s not the kind of race I’d like to be a part of anymore. There’s no tomorrow if you can’t live today. With some amount of direction in my mind, one day at a time is still my mantra and will be for the rest of my life. Six years (and counting for all the years to come) of fighting and struggling against my own health and body has made me who I am and is surely making me who I’d like to be. This is different and I’m okay with it being different now.

Last Sunday. 

I’m usually very careful when it comes to calculating my medicines and making sure I always have what I need etc but I guess things do go wrong at times and you forget. I’ve had a lot of other things on my head lately so I understand and choose not to be harsh on myself for forgetting. When I woke up on Sunday and realized I’ve run out of my meds, I freaked out a bit but I thought it would be a good time to gauge my dependency on these tablets.

I was secretly hoping I’d be able to survive and feel good about it – in the past, I’ve had pretty serious withdrawal symptoms (I was told I’m even more sensitive to these than most others) to these tablets so being able to get through just a day meant a lot to me. These tablets are supposed to be slowly weaned off and not stopped abruptly. It seems it needs to be in the bloodstream constantly in order for it to do the work and help with the pain. I was rather hopeful about managing on that one day. It’s just one day. I thought hey, I know my body better. I’ve got other alternative therapy options. I can get through this. I’m sure I’ll be fine As you can probably guess, no. I wasn’t.

My health practically deteriorated through day and within two hours, I couldn’t function anymore. Pain went out of control, I had a short burst of palpitations and breathlessness, my heart started feeling heavy, my lower body refused to coordinate with me and I spent the whole day in bed.

That’s when I realized, no matter how much I do my part of working towards being independent, empowering myself as a patient etc, there will be times I need help. I’ve had a hard time becoming okay with needing help but I’m learning that asking for help doesn’t make you weak. I’m thankful I had a friend around to help me through the day because honestly, I’m not quite sure how I’d have survived otherwise. It also, obviously, proved a point – I’m not ready to live without medications yet.

Again, needing medication doesn’t make one feel great at all but coming to terms with the fact that maybe it’ll help you function and enjoy life at least a bit and work on your dreams is a decent perspective to adopt. Of course, medication is expensive as hell but without it, your place is only your bed. Dealing with so much pain  and managing the  stress associated with the  finances  is a very ugly aspect of chronic and rare illness. Not everyone gets it and not everyone will. The guilt that follows just because you need your medicines is absolutely unnecessary. It is something to work on I think – to realize you didn’t ask for this. It didn’t happen to you because life hates you. can My aim is to keep creating stability in my life so that one day, I’m able to live on a lower dosage – that’ll be epic. Until then, I have to come to terms with what is.

…. Here’s the good part, I have managed to reduce the other medicine by 1 pill. Instead of three a day, I’m now taking two – and trust me, I couldn’t have imagined lowering it back then. But I have now. And it makes me feel great. It’s extremely validating to the choices I’ve made over the last one year. They’ve been tough, mentally and emotionally and physically,of course. So to see an improvement, to FEEL some amount of overall balance and strength is an achievement. I couldn’t have asked 2015 to be any better. There’s still lots to work on, but I don’t expect learning to ever stop.

Thank you, 2015! You’ve really been amazingly kind. Thanks for all the things that fell in place and fell apart. All was meant to be for all of it is helping me move forward. Thank you for all those who believed when I said I know the best for me and thank you to those who thought they knew better – either ways, I’ve learnt a lot and I’m doing my best to figure everything out step by step. It’s happening at a rate of a body not meant for everyone to understand.

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And just as you think you’ve got it all under control, everything changes. It turns into a complete mess. Everything falls apart. Your control doesn’t count for anything. Nothing at all. You find yourself standing on an unstable foundation. Uncertainty takes over. You find fear building up inside of you. One bit at a time, every aspect of your life begins to alter. You are forced to evolve and grow. Your story changes. Your goals and aspirations look different. Your priorities are reshuffled. Your relationships are affected. Your truth starts to unfold. You realize you don’t seem to fit in anymore or that you never did. Your plans were just a dream. Your present becomes your reality. Your reality creates more opportunities. You realize that stepping forward requires stepping inwards first. A new set of doors suddenly open for you. You look back and see that some doors remain closed, some people belong in your past and some plans you thought your life depended on, just don’t matter as much anymore. Nothing looks like what you expected it to one day but you know it was meant to happen. Even if you don’t fully understand where it leaves you at, you know it was all for good.
Life continues to take place; every moment, every breath. Stay true, stay present. Stay grateful for what you have now because chances are, life won’t always look the way you thought it would.
❤︎

An Extra Mile. 

 
You see, if you’re dealing with an invisible illness, a chronic or rare illness or some sort which doesn’t always show, you tend to get a lot of this:

“But you don’t LOOK sick!”

A funny meme that I found on invisible illness had a response to the above going somewhat like this, “Please tell me, what does sick look like? I’ll make sure to harder next time.”

Yes, there are times I feel frustrated and would want to give a similar reply but I rarely ever do. Because I understand it’s only normal to expect a “sick” person to LOOK sick. You’d usually expect a handicapped person to be on a wheelchair, right?

The truth is, a lot of us choose to not look sick. All you have to do is turn our bodies inside out and you may see it for yourself. It’s a conscious choice. One of those daily choices we make; one of those which may not even come across as something anyone else might need to stop and think about.

I know, life is all about making choices for all of us. Whether you’re sick or not.

But making a choice out of limited options, creating possibilities out of painful hurdles, turning physical weaknesses into mental and emotional strength, using all the brain power to keep you up and going, and having to consider bodily consequences for every little action, every move, through the day, is simply not the same.

We love to talk about strength; about how strong our body is, how toned or attractive we are, and that’s brilliant! But I’ve learnt over time, through personal experience, there is no strength like the strength that comes from within. From deep within. It’s the kind of strength that sometimes lies underneath the most nasty emotions but it’s still right there, to keep you motivated and to help you up each time you fall (literally and metaphorically).

That’s why I like to think, a lot of us may be physically fragile, but we’re mentally unbreakable. We might lose our balance, but we come right back and we’re stronger each time. We spend so much time and effort on our body and its needs that nothing else is as important anymore. What can be more of value than your own health? I can say this today, barely anything. In fact, I’d like to say nothing. Nothing comes close to health in terms of priority.

On days like today, I have to go an extra mile – to look less like a patient and be more patient with my body. It has come a long way and it has a long way to go.

Love,

Manasi Dalvi

September 18, 2014

September 18, 2014 was a major turning point in my life. I was on my way from school and a lorry hit my cab from the back, causing all the joints in my body to literally rattle and weaken. I experienced a quite an intense whiplash; with my neck and spine feeling the most amount of stress. Just few weeks earlier, someone at school had bumped right into my left shoulder, causing it to move out of position once again. I was barely healing from that injury when this accident happened. My left arm was in a sling and just as I settled in the cab on a long ride back home, I opened my sling up to give my shoulder a little rest when within seconds there was a loud bang and I thought that was it.

It took me a few seconds to actually register that a lorry hit my cab and a few seconds more than that to notice that my body was in shock.

The impact of the whiplash was so great that I couldn’t move one bit. I still remember how the traffic police just peeked into the cab, looked at me and got us to move to one side of the road and rode away on her motorbike. She didn’t think it was necessary to ask me if I was okay, and I assume it was because I looked completely alright! There was no blood, no visible injury for anyone to think that I was in severe pain – but I was. At that moment, I thanked my stars for being alive. It could have looked a lot worse but I was alive. I was in immense pain, but I was alive. I was breathing. I had no strength left in me to even make my way out of the cab in order to take down the details of the lorry etc.

That accident led me to make some even greater changes to my lifestyle. I was at the brink of having a major burnout and I didn’t want to fall into the dark pit of pure despair once again like I did around the time of my diagnosis. I had been working and pushing myself through life as if I was born with a fit and normal body, taking on too much and practically functioning on an empty tank. I was comparing myself to those around me who were blessed with a body that allowed them to continue to work according to their plans, pursue their passion and hobbies and I was only causing myself too much suffering. There were people around me who expected much more out of me and I was one of them too. It was this accident that made me see my reality, and for once stand up and make that tough but highly necessary call. It was time to prfioritize my health, my dear body, over anyone or anything else.

For months before September 18, 2014, I was hanging by the edge of the cliff, unable to take that leap of faith, which was required in order for my situation to really change. I feared screwing up and I doubted I could survive the consequences of those decisions. I was worried-sick, even though I knew I had to hold myself together and take that leap. I was suffering every single day, caught between what I should do versus what I need to do and want to do, and was experiencing terrible amount of fatigue and pain. I didn’t have it in me to close my eyes and trust that I knew what was right for my body. My personal expectations and those of others tied me down too much and kept me from giving myself what I needed at that point in time. Seeing that the life of those around me was far too different from mine used to make me feel as if I was at fault or as if I didn’t do enough and that wasn’t true at all. How my life has panned out wasn’t my fault. I didn’t consciously choose this situation and neither did I choose these circumstances to be born around or with. These were the cards I was dealt with and it was up to me now to stand in my own power and play them in a way that’s true to who I am and my condition.  This wasn’t a race against time or people. This was simply something I had to learn to work around.

It was also around this time that I understood that different doesn’t mean bad. It just means different. Sometimes different is good. Sometimes different is even better.

This accident finally made me realize that I had to stop. I had to pause and breathe before anything. I hadn’t given myself that permission to just take it slow because I was constantly thinking about my past goals or about not disappointing people. For months before the accident, I couldn’t gather the courage I needed in order to finally let myself rest. To say enough is enough and realize that it doesn’t matter what people say or feel, even if they’re our loved ones, because no one really knows what’s happening to us or our story as well as we do.

This accident FORCED me to STOP. It forced me to question my priorities. Was I my own priority or had I been giving priority to everyone else and everything else?

It was this accident which once again proved to me that not everything is in my control. I was looking after my body well, making sure I did what was needed for it to function, and did what I could to be more aware of my surroundings in order to not make any “mistakes” and hurt myself… AND guess what? This accident still happened. No matter how much we try to do things a particular way (often times we refer to it as doing things “right”), there will always be incidents that are totally beyond our control, and this accident was one of them. More often than not, these things happen because they’re meant to make us think. To force us to jump out of our comfort zone, or make that difficult decision, or simply to teach us something we are yet to learn.

It took me months to feel a slight amount of relief from the impact of the accident. Till then, I was popping an obscene amount of medicines to get me through the day and look and feel normal. Dealing with the post-accident stress was another story of its own. My skin was covered with a faint rash, which took a long time to disappear, and I was waking up at night dreaming of being hit and falling apart. At times, getting onto a Silvercab makes my body cringe a little, and I can’t help but be reminded of the accident and the effect it had on me.

Today, one year later, though there are still a few question marks in my life and there is a fair amount of instability and uncertainty associated with this condition and its consequences, I am so happy that I took those big steps forward. In some ways, this accident really helped me pick out what I needed to focus on. I chose to do things that felt right to me, even though I didn’t have a clue about whether or not they would actually turn out to be the “right” decisions ultimately. The thing is, I am now fully convinced that any decision made in favor or who I am at the very core of my being, and what my body truly needs for a condition that I’m born with,  has to be right; or at least must be one step closer in the right direction.  In fact, what is right for us today may look different tomorrow, depending on where we are our life anyway. Who says we can’t change our mind later? We might not be able to go back to that exact time, but we can most certainly learn to adapt and make better decisions as we move forward. Today, I’m  putting together a lifestyle that serves my present state and figuring it all out one day at a time. Some goals and dreams look significantly different from what I once thought I’d want, while some continue to stay strong. It surely requires a lot of patience when you have to rediscover all the possibilities while dealing with limitations so very real. 

My health has brought me closer to myself.

I’m relieved to finally have been able to write so much much about September 18, 2014. I barely spoke about it with anyone, so writing a blog post about it is a big deal.  

With that, goodnight and have a wonderful weekend!

❤︎