A Space.

I’m going to have to make a big decision soon and I just want to write a little bit about it. I’m sure I’ll be able to write more once things settle down a little bit.

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“Honor the space between no longer and not yet.” – Nancy Levin

It’s something that matters to my existence once again (nope, no drama here); to the stability and certainty that I find beneath my feet; something that could add to a little bit of  stillness to the hypermobility. It’s not just a  pretty space we’re talking about, it’s a space where I can be me, just the way I am , with myself, and be there for myself like I have been over the past ten months or so. A space where I get the peace I crave, where my body feels safe, and gets the rest it needs. A space where my mind can breathe, and the air that fills me, heals me. A space where I would spend most of my hours in the day. A space that reminds me that it’s all okay.

We need this. Each of us. This stability, this certainty. We need this. A space that prompts us to think, to become our best selves.  To bloom into what we are yet to become. We need a space that acts like a reminder, that even int the worst of the times, we are here for ourselves. I know I’ll be safe, no matter where I go. I will be taken care of and things will fall into place.

I’ve found myself in such a situation countless number of times. I’ve known exactly what I needed, and exactly what to pick but I still was in a strange sort of a dilemma, which really shouldn’t exist. I’ve been surrounded with fear and worry, and little sparks of strength and courage that rest deep within the core of me.

 We usually know, don’t we?

How do you people deal with such situations? Do you put your situation above your health and fundamental needs? Or do you allow yourself to get what you need first before dealing with a situation at hand? Can any other situation be greater than your own health? I’d love to hear, if anyone is willing to open up and share. I’d love to learn.

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Acupuncture Once Again!


The last time I tried acupuncture and cupping was sometime in 2011. My left shoulder was still causing me a lot of pain even after an open surgery on it some 6-8 months before that. I was told that my recovery period was abnormal and no one new why. I had no clue what was happening to my body and was frantically going around trying anything and everything to experience just ONE day of painless-ness. Nothing worked and no one knew why.

We had no idea where this was heading.

My first experience with acupuncture wasn’t good at all – it didn’t help in anyway and it would make me feel exhausted all the time. I used to go for two sessions in a week and be in bed with a fever the rest of the days. After a point I thought it was time to stop.

Just a couple of weeks back, I decided it was time to give it another shot. I decided to open my mind up once again and just see what happens. You know how timing plays a big role sometimes? Lots of new changes are happening around me at the moment and this seemed like something to try again. I’ve had three sessions till now and they’ve been alright. I don’t have much to say about it yet I guess so I’ll just wait to see how things turn out.

This time, one of the major reasons for me to continue with acupuncture is the Doctor that I’m seeing. We can communicate in English and she’s been very very kind and patient with me. I actually understand what she’s doing to my body and I like that. I want to feel like a part of this entire healing process. I like to have a little bit of that responsibility and empowerment. It’s my health after all. And this women, she explains. She listens. She asks questions. She wants to know details and she wants to tell you more.

2012 was different – I wanted to be fixed and I didn’t care how that happened. I needed someone to ‘fix’ my broken body. I didn’t think I had much of a role to play..

I’ve read (and I’m seeing that) what a great difference it can make to have a supportive healthcare team, so at least for the next couple of weeks till I develop a new pain-management plan for myself, I’ll continue to see her. It’s all about trail-and-error at the end of the day. I’m at a point where I may be making big shifts again and really, everything that’s happening seems to be suggesting the same.
I’m excited to see what comes next.

Until I’m able to write next time,

Lots and lots of love,

MD

An Excuse?

Before I write about what happened today, I’d just like to say – my intentions of sharing such an experience are rather clear – one, I wish that by reading these things we write, other ‘normal’ people are able to at least understand what sort of an effect their words or actions could have on people with a rare or chronic illness, even when they don’t mean to cause harm. I am aware that most of us don’t mean to, but does it really hurt to pause and think about it for a moment anyway? And two, I want to let those who are like me know that we are on the same side. We’re a team, no matter where each one of us is located or if we’d ever cross paths, we face similar situations and that we’re getting better at handling them through our experience. 


Someone asked me this morning how I was doing and since it had been a while from the last time I saw her, I gave her a quick update about the latest injury I’ve had. She heard me out I think and said something like, “Well, at least you don’t need an operation.” I said,” Yep. I don’t. I doubt that would help anyway.” She goes, “ Well it’s probably not that dire then.”

Fair enough. It probably isn’t that dire but it is causing me a lot of pain. And it’s not the same amount of pain someone else with healthy collagen would feel if he were to have a bulged out disc. 

And this happens next. 

She asked me when I plan to visit my brother and I told her that as much as I would LOVE to visit him, I do not think it’s a good idea at the moment. Given that a 20-minute taxi ride can take a horrible toll on me, I don’t wish to take on a 30-hour long journey for now.

Our conversation was going fine, I was telling her that if I do end up traveling anywhere, it would possibly be to see him first etc. Just then she goes, “NICE! You know what, just travel on Business Class. Come on, get your dad to get you on a Business Class and just go meet your brother! You have an excuse so that shouldn’t be a problem. Your back! Hahaha. Good excuse to travel on Business Class, eh?”

Honestly, I’m quite surprised that what she said didn’t get to me. It didn’t make me tear up on the spot and neither did it make me angry. I know she didn’t mean to say it the way it came across to me. I just made a mental note that I want to share this on my blog because sometimes even the closest of our people, or our health professionals, may end up making certain unintentional comments which can make us think for a bit. Depending on who I’m with, I decide if I wish to communicate my feelings or let it go. 

My reply to her was rather ‘normal’. I calmly said, “ Of course, for a long flight like that, I would need to fly on Business Class for sure.”

I’m guessing some of us who are reading this and are not dealing with an illness may find nothing ‘wrong’ with what just happened. You might even think I’m choosing words to focus on. You’re right to some extent, because I am. But you may be wrong for the reasons you come up with as to why I’m sharing this.

I don’t think what she said was ‘wrong’ per se, but it was something that reminded me of other times in the last seven years where I received similar comments, and I thought about all of us around the world who face such situations on a day to day basis. If I were someone who did not have an illness, I’d probably make a joke out it immediately. I do that even now because it can lighten up a situation and sometimes I don’t because not everything is meant to be light and funny all the time.

We don’t use health as an excuse. It’s not an excuse for us in any way. If anything, it’s the very opposite. If anything, we wish our health excused us for once. I doubt any one of us would like to use it to our advantage or something. 

Up till now, I don’t remember a single occasion in my life where I used my health as in excuse to do or not do something.

My health wasn’t an excuse when I had to submit incomplete design projects back in University. My health wasn’t an excuse when I had to cancel on my friends’ Birthday parties. My health wasn’t an excuse when I couldn’t deal with the noise around me because of the heightened pain level and needed space. My health wasn’t an excuse when I had to tell my boyfriend back then to carry my bags. My health wasn’t an excuse when I couldn’t do some basic household chores. My health wasn’t an excuse when I had to leave Design school. My health wasn’t an excuse when  I had to make a special request to the Business School to let me audio record my exams instead of writing them out. My health wasn’t an excuse when I had to tell my group-mates that I couldn’t stay back after school for group meetings because I attended a 3-hour lecture that morning and had no more energy left. My health wasn’t an excuse when I had to apply for the Disability Liaison Unit a year later. My health wasn’t an excuse when I had to stay home instead of going out with my brother because I was tired from traveling to the doctor that morning. My health wasn’t an excuse  when I had to tell someone next to me at a movie hall to exchange seats because I needed the aisle seat. My health wasn’t an excuse when I had to use a seat meant for the handicapped even though I looked young and fit. My health wasn’t an excuse when I had to take an elevator only meant for the handicapped. My health wasn’t an excuse when I had to spend a lot of money on taxis. My health wasn’t and excuse when I had to ask someone at the grocery store to help me with my basket. My health wasn’t an excuse when I decided that some relationships in my life must change. My health wasn’t an excuse when I decided to live on my own and learn to look after myself slowly.My health wasn’t an excuse when I decided to take my time for myself and make drastic changes to my lifestyle.

My health wasn’t ever an excuse.

My health was the reason; it was the reason I chose (or choose) to do things a particular way to reduce suffering and pain for myself, or fulfil my fundamental needs because I have a body that is very very different. 

So, nope. My health is not and will not be an excuse for me to travel on Business Class to see my brother.

 

Small Steps.

When I think about all the things I have to figure out now that I’m working on ODAAT, I wonder if I might have taken up too big of a project for my body to handle at this point in time – one slipped disc was painful enough and now I am adapting myself to manage two at the same time, which is naturally taking a lot out of me. I have to be even more patient with my body today than I have ever needed to be. I had a choice that day, when I finally made up my mind that I’m doing to go this – I wasn’t sure if I should wait till my back feels better or go ahead with it anyway and see how things come along. I decided the latter was what I waned to do – take a step forward and let things unfold.

If I were to look at everything all at once, it can scare the crap out of me sometimes. Really. Fear and worry start to kick in and everything starts to look more and more uncertain and that’s where the downward spiral begins. But, when I break that one big objective  (like the completion of ODAAT) down into smaller, more achievable steps, and continue to be honest with myself about the pain level and what I can handle, it all seems easier. For most of us with rare illness, it is the physical aspect (which can cause a lot of mental and emotional distress) that tends to slow us down or hold us back from things we might want to do and that’s been something I have been dealing with for sometime now. In fact, with my latest back injury, everything has become even slower than normal (my) and I’m just building myself up to what is needed out of me right now. It’s been tiring! But I’m learning. It feels like I’ve done this before, except, I’m doing it with more knowledge (well, and more pain) about myself. It made me very sad initially ,but now that I see this as part of my life I must accept for now, I’m able to hold my head up and keep moving forward.

One step at a time…

I don’t have a detailed plan that I must stick with at the moment but I do have a new, fresh perspective of looking at plans and what we can or can’t control. I used to be someone who just couldn’t work without a plan, but that side of me  had to evolve and change along with my body ,and come to terms with my current reality. It has taken me a while to get here, and I can say now that I don’t put all my energy into planning every little thing as much as I used to before and guess what, that seems to be working for me! From a point where I thought health would be the last thing I’d need to worry about in life, it has become that one (and possibly the main) thing which encourages me to do or not do something.

It can requires some conscious effort on my part to bring myself back to today, and save my energy for today. I’ve seen that this approach has been helping me in ways not everyone can see, and I’ve also noticed that the moment I find myself worrying too much into the future or stressing myself over not knowing enough, it gets very taxing on my body.  Let’s just say, I’m more open to not having answers and I’ve started to think that as long as I continue to do what I can (this doesn’t mean push my body too hard that it fails on me or follow what I “should” be doing according to others) in this very moment, things in the future will find a way.

Bringing ourselves back to today and being true to our body can seem like a challenge if we are surrounded by people who might have a different way of handling certain things (which don’t work for us anymore), or when we are  around  otherwise healthy and ‘hardy’ people who don’t have such needs. This is our journey and it’s for us to figure out how we wish to live through it. The unfortunate truth that I’m learning to accept as I grow with this painful illness is that even if someone really deeply cares about us, it doesn’t mean they’ll understand why we are where we are at or what is really happening inside of us.  The more we try to make someone else understand something they just can’t relate with, the more we lose out on what we can do for ourselves with that time and energy. Of course, there will be always some people who are able relate with us beautifully, and those are the kind people we must look out for.

 All of the above said, it’s not as if don’t plan at all – I still own a planner and I love to sit with it and mark out my days and plan my activities. The difference is that these days when I plan, I’m more aware of what my body has to say. I take that into serious consideration and make flexible plans,which, I review every couple of weeks to see what needs to change. The idea this time is really to team up with my body; not to go against it in any way. Even though there are some important things I need to take care of in the next couple of months, I’m looking at it one day at a time and checking-in with myself as to whether I am doing what I can about it. And as long as I am convinced that I am, there is no hurry, no race to win, no finishing line, no where to go except just be here today. It’s fine if anyone else thinks otherwise.

From where I started off with ODAAT, I’ve had to review my plan about four times and I’m open to it changing even more if it has anything to do with how I’m doing in terms of my health. As I continue to develop ODAAT, I must keep telling myself to take each day as a new day and see what comes about.

Small steps.

Baby steps.

❤︎

Just finalized the layout of the Daily Section of #ODAAT! What a beautiful feeling it is to see your initial ideas and sketches finally come alive!💖 Okay, alright, it’s still on a normal printing paper but I’m just so excited thinking about the day it all comes together!

It took a few drafts to come up with this layout as each component had to be placed in a manner that best complimented the #focus of this section – which is to develop a simple daily #routine as our ‘alone’ time to ground and centre ourselves.💐

Now that I’m done with the Daily Section, it’s time to further develop the Weekly and Monthly Sections before looking into the details of the content.

Goodnight!💕

Update: Lower Back Injury (2)

I haven’t been posting much lately because I think I just haven’t gotten the time for myself. I had a really great time with my brother in town and now that he’s gone, it’s time to get back into routine. I’ve been doing more in general since he was around and doing anything more than what I am used to and able to do can get difficult to deal with. That was expected though, so that’s alright. I truly enjoyed having him back – we got to spend some time together and I loved that!

But I’m just SO SO SO exhausted…..

Considering that I just wasn’t getting better and could barely do what I am used to doing on a daily basis, I had a slight hunch that something might be out of place. The pain in back hasn’t been this bad in a while now and it was high time I got it checked. I got the Doctor to call for an MRI for me.

It showed that I have another bulge in one of the discs in my lower back. I’ve had an existing herniated disc at L5-S1 and now the one above it, L4-L5, is bulging out a little bit too. Due to a slight nerve impingement at that spot, I can feel the pain shooting down my left leg and sometimes it feels like the insides of my lower back is on fire.

I’m now taking an even stronger dose on painkillers (and I’m not happy about that!), which, just before this recent injury, I only took as per requirement(apart from daily nerve medication and muscle relaxants). As per requirement would sometimes mean every single day for a couple of weeks, or every few days – but at least it wasn’t every single day of the last eight months or so. Not that I wasn’t in pain or I used to feel less pain, but I was very serious about limiting the number of painkillers that I was taking and  had learned to manage the pain with all kinds of therapies and remedies. And now I’m back to taking some 4-6 painkillers a day.

Over next few days, I’m going to be settling back into my place and tidying it up so that from next week on, I’m able to give my full undivided attention to my body. I’m quite sure that as I get all the rest and do what needs to be done, I’ll slowly be able to reduce the number of painkillers again and one by one, everything will start to fall in place.

❤︎