From all the information and knowledge that I’ve gained about EDS over the last seven years, I know very well that it is something that will continue to take the front stage in my life for all the years to come. I can’t say that I want it to be this way, but the truth is, self-care will and must be a priority for the rest of my life. I wouldn’t want EDS to “haunt” me till my last breath. I hope I’m able to stand strong through it and find more reasons to be grateful. Perhaps even for EDS. 

EDS can affect your relationships in ways you can’t even imagine. Dynamics within family and friends are altered greatly and you’re able to see way more clearly than ever before. You get to see who will stand by you and who won’t, or might be unable to. There are people you have to hold close to you and some you have to let go. 

A lot of times you, as a patient, grow and develop in ways others can’t keep up with. And that’s where everything starts to look different. EDS is a challenge, not just for the patient but also for those in his/her support system. It is something that requires everyone to step up the game and realize the intensity of it, and grow through the necessary life change. 

Even though it’s not been easy, I do strongly believe that whatever changes I had to deal with/ all the painful decisions I’ve had to make because of EDS (or for my health) were for a greater good. Something will come out of this. At the end of the day, even if I have to share my story for the rest of my life, just to directly or indirectly become a part of someone else’s support system, I’d be at peace. I would have made a difference.


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!


Right Knee Update [3]

My right knee still isn’t doing well and I still need my walking cane to even walk around my apartment. I wasn’t expecting it to take this long! I’ve been home over the last 8-10 days and I’m just waiting to be able to get my to my usual routine. I’m still in so much pain, like deep muscular ache and that one point where the shelf hit my knee cap still hurts like pure crap.

Here’s a good news though – I haven’t shattered my knee cap or fractured anything. It looks pretty alright in the X-rays.

So you’d wonder, why the heck are you in so much pain?

Let me explain. Our rare bodies have a tendency to get bruised easily. That’s just how it is. Impact from any hit, even if it wasn’t as strong for a normal person, can feel like someone shoved a knife in us and left it there. On top of that kind of sharp and deep pain, thanks to our faulty collagen, healing and recovery takes forever. Like I’m not even exaggerating.

F O R E V E R.

The normal response of our bodies, after an impact, is to stiffen and tighten and freak out… which leads to our muscles literally contracting and turning rock solid. Which, by the way, doesn’t help one bit. Contraction of muscles only makes our original injury worse and more painful as it tends to exert extra pressure around an area that is hurt.

I would think if someone else got hit the way I did, they would have been perfectly fine by now, continuing with life, jumping and hopping around and training for a triathlon if they wished. My body on the other hand is  trying to do what it can do to keep me in one full piece that I wish to be in. It is keeping me in bed and demanding a lot more rest than usual. It’s unfortunate that the pain is still killing me but I’m very well aware that it’s a matter of time. Because I know my body only needs extra time and rest, I think I’m willing to be patient with it. My specialist wants me to go for more physiotherapy and  deep tissue massage (manual therapy works well with my body so I’m up for this! ) which can help release those horribly tight muscles around my knee. My quads hurt. My calf hurts. My bum hurts. My foot hurts. Basically, my entire right leg is just having a sickening flare up. 

Thankfully, I’ve pre-booked appointments with my temporary physiotherapist and massage therapist and don’t have to worry about being put on a waiting list this time.  Life turns into hell if you are injured and can’t have your regular physiotherapy sessions. I’m serious.

Now, did I mention how fatigued I’ve been lately? No? That’s fine, I’m too fatigued to type.