It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.
It often makes me wonder, how do you define work anyway?
Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?
What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?
Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?
What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.
It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.
What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?
Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?
You know it’s New Year’s soon when you get your next planner! I am so excited to start using it! Just look at how gorgeous this flowery-pink planner is. Absolutely love love love everything about it.
It’s my third kikki.k planner in a row (2015,2016,2017) and I’m still not bored of it. Unlike other times where buying a new planner is more of a self-ritual for me, this planner came as a gift from my best-friend.
I think I’m ready for 2017.
P.S. I know my thumb looks rather creepy in the second pic. Let’s just focus on the sheer beauty of these planners instead, shall we? :)
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.
As I understand my condition more and more, I’ve realized that sometimes it is possible to feel really demoralized and disheartened. There’s nothing to hide about it; there really are some days that pull me down, especially the days I feel as if I am not achieving something. These are usually the times when I forget for a moment that I don’t need to be achieving things at the same rate as everyone else. It gets even harder because I am so used to having goals, deadlines and objectives that this, my present, sometimes just feels like an empty space of nothingness. I think that’s good in a way; this empty space of nothingness has been helping me more than anything else ever did. I need this empty space for myself. But on some days, this very empty space can feel disorienting. I think I was addicted to wanting to complete tasks all the time, and now I’m forced to slow down. I choose to slow down too.
With so much pain and so many things to do for the body, there are times when my yesterday, today and tomorrow begin to look the same. For someone who has to deal with such increased mobility in her body, some amount of stability in the mind (some sort of routine) is always helpful. It brings a level of assurance. I need this stability, this balance, and this certainty that things will stay a particular way. There is just too much instability, uncertainty and imbalance to deal with otherwise!
I’ve noticed that each time I start to feel bad about anything present, I start to feel bad about future…. and the times I feel bad about future, I feel worse about everything present. Feeling worse about my present situation can ruin my day quite a bit. If I’m not able to find a way to motivate myself (or at least be okay) being where I am, it’s even harder to feel hopeful about future. I like to feel that I am still achieving smaller personal goals in order to be able to achieve the bigger ones later.
One of my main goals these days is to have a certain amount of control over my own body so that I am able to at least look after myself to some extent. This means that I need to be able to do some really basic things in order to feel a little less dependent on people around me when it comes to my own body.
So because I still love to own a planner (My 2015 Planner is this gorgeous Turquoise hardcover planner from Kikki.k), and I still feel ridiculously happy when I can strike things off my to-do list, AND because I want to make sure that I keep going, I come up with weekly goals for myself. I try to write very specific ones, but I know that they have to be flexible; just like my body – if there ever comes a day I am not able to do something, then that’s okay. If there ever comes a day I don’t feel like doing something and want to do something else, then that’s fine too. There is no need to kill myself over certain things because I know that no matter how much I try to be in control, things CAN happen. Things HAVE happened. These goals are not meant to stress me out, they’re meant to remind me that I am capable of doing what works for me AND that I still have a direction; even if things feel unclear sometimes.
These goals are just simple list of things I want to be able to do today that will make me feel good today. Bigger goals and dreams can take a back seat for now (or they can nicely marinate themselves at the back of my mind). The last thing I want this to-do list to do is to make me worry about future so much that I spend all my energy thinking about tomorrow, and forget that today is in fact more important than tomorrow can ever be. I did that too much in the past and though I can argue that it worked back then, that very attitude doesn’t serve my present at all.
What doesn’t serve my present can’t possibly help my future. Can it?
I don’t think it can.
So this is what I do:
Every Sunday night, I sit at my desk and think about ten things that would make me feel good about myself in the present moment. I ask myself, “What are the things that I would feel great striking off my to-do list at the end of the coming week?” and “What are the things I can do for my mind and body to feel a little bit at peace with where I am?” At times these goals are slightly more ambitious. But there surely days (and weeks) when my one and only goal is to get out of bed and at least walk around the house.
This to-do list is a mix of things that are directly related to, or totally unrelated to my physical health. I’ve had goals like “Start working on blog”, “Purchase blog domain” or even things like “Meet a friend for coffee”, “Don’t miss naps this week” and “Drink more water” . So yes, they tend to vary quite a bit every week.
Here’s my list for this week:
5April 2015 – 12 April 2015
Pilates Sessions X 2
Reply to Sarah (with points)
Finish off current book: Macrobiotic Diet
Pool Walk X 4
Meet a friend for dinner
Check: Voluntary Service
Longer Walk X 1 (Beach?)
Blog Entry X 1-2 or 1 Pattern Design
Check: latest HMS updates
Order next batch of books
Once I am happy with my list, I open my awesome planner (I don’t have a photo for this one – maybe next time), which usually has some items already in place (like Physiotherapy and Pilates slots), and start adding some of the weekly goals into the free slots available through the week. I shuffle things around whenever and however I want to, and tick the items off as I get through the week! And this…. feels freaking amazing every single time.
Another monthly practice that I have adopted very recently is to stare (STARE) at my calendar at the end of each month and really SEE what I have achieved. A lot of times we fail to see that even if our days may look the same, there’s actually quite a bit that we have managed to achieve at the end of the month. For me, there are times something pops up out of nowhere – like an opportunity to participate in a charity event or help a friend with something – and these are still tiny achievements at the end of the day.
In the month of March, I got a chance to write a Patient’s Story for Global Genes, started my own blog FINALLY, was able to keep up with Pilates and walking pretty well and also managed to catch up with a few friends! Of course I had my days of pure weakness, total brain fogs and lack of energy