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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.

Day 13: Bedbound

In the last 13 days of being bedridden, I had three alsolutely healthy individuals telling me that I shouldn’t have done something I did on New Year’s Eve. What did I do on New Year’s Eve? I went out for dinner (DINNER) with friends, couldn’t sleep till 4am and woke up in excruciating pain. And did I complain to you? Nope.

These three individuals aren’t even close to me and most definitely don’t know what it is like to be chronically sick for eight years and the consequences it has on one’s life.

 I completely, from the bottom of my heart understand that they were probably concerned and perhaps I need to just let it go and I certainly will. However, I choose to share this today because I want to bring across a very important message.

On behalf of all of us, the chronically ill community, whose lives generally revolve around their health, acceptance and gazillion other life-altering decisions, I want to say something:

Every single decision we make is consciously thought through by us. Whether that’s something as minor as choosing to use a fork instead of chopsticks, or something major such as having to leave school or a full-time job, or, to once in a while allow ourselves to do something we normally don’t. One can’t even begin to imagine the lengths we go to weigh out pros and cons etc. Every cause and effect is measured. And even then ,our bodies fail us sometimes. Even after all the thinking and taking necessary precautions, there are times when our bodies have other plans and leave us in utter disbelief of the amount of pain something can cause.

At the end of the day, we are not fortune tellers and as much as we can base some of our future decisions on our past health-related experiences, we cannot deprive ourselves of being human. Most of us are extremely responsible people leading a rather simple life, filled with passion and gratitude despite all our struggles. And, let’s be honest, our health usually doesn’t allow for bad decisions.

The last thing we’d want to hear when we’re dealing with such heightened pain is what we “should” have done or not done or do. When you tell someone that they should do something (or not), you make them feel incapable of making right decisions for themselves. It’s almost as if you believe you know what’s better for them. Trust me, you don’t.

What would help instead is to simply ask how we’re doing and if there’s anyway in which you could help. Thank you.

#Loveofallkinds


Love, because how else do you open doors to growth, happiness and peace?

Love, because how else do you become a more refined version of yourself?

Love, because how else do you learn to become more available for others and yourself?

Love, because how long can you possibly guard your fragile heart and remain surrendered to fear?

Love, because true strength lies in being vulnerable and being soft – with yourself and others.

Love, because even if there’s a risk of heartbreak and pain, there are rewards far more valuable than those transient waves of sadness.

Love, because when you choose love, you choose life.

#love #loveofallkinds


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

❤︎

#chronicillness #spoonie #chronicpain #elhersdanlossyndrome #elhersdanlos #tears #emotions #pain #suffering #chronicillnesswarrior #selflove #selfcare #health #mind #spoonielife #onedayatatime #trust #rare #illness #disorder #strength


Watched a disturbing film last evening + had a few old and totally unrelated memories come up for me. End result, I stayed up through the night just processing all of it, writing and feeling like an absolute mess.

Yep, I tend to feel more and I don’t try to change that about myself anymore. Instead, I let myself have my emotions and try to do something productive with them, like write or cry (yes, crying is a very productive & healing activity), meditate or speak with someone who lets me have my process without trying to rush me through it. Maybe something else works for you.

To all those empaths who are (or were) told that they are “too” sensitive or that they must toughen up, I say you don’t need to bother about anyone’s definition of “too” sensitive and you don’t need to toughen up. Be soft, stay soft. True strength is found in being human; being vulnerable. Not in ‘acting’ tough, and most definitely not in numbing yourself to your emotions. It’s okay to feel, and to feel deeply.

❤︎

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!

❤︎