Part 6 : The Story Of My Diagnosis

December 2013 – June 2014

Left Knee Subluxation and Degeneration

On Christmas of 2013, I woke up with a sharp pain deep inside my left knee cap.  I was  familiar with this kind of a pain by then and I knew it was HMS affecting yet another joint in my body. I couldn’t walk anymore.

It’s really not as if I used to walk a lot, but at least I didn’t feel handicapped. With my left knee kicking in…

My life took another insane turn.

I got in touch with some Doctors and Specialists from the UK who have been carrying out a research on HMS/EDS Type 3 for a while now. The main thing I got from them was that there was still no cure. I was told to make lifestyle changes that work for my body, continue with pain management therapies and keep doing my best.

Knee Specialist

X-rays and MRI of my left knee showed signs of Arthritis (along with painful cysts and inflammation). My left knee joint was degenerating at the age of 24. My IMG_3606kneecap was so unstable that the Knee Specialist said one could just “pop” it out of place easily.

He suggested that I try Hyaluronate injection ( for my knee joint but he clearly told me that considering I have HMS, and the fact that even other pain management procedures hadn’t really worked on me, there was a possibility that this wouldn’t either. I gave it a shot anyway because there was nothing to lose – if it worked, I’d be able to walk.

It didn’t work. This time round, I didn’t feel all that bad. I think I was beginning to come to terms with reality. I was starting to understand HMS/EDS better.

Since that day on, I’ve needed a knee guard and rock tape as extra support.

Right Knee Subluxation and Degeneration

A few months later, around March 2014, my right knee was affected. I was sent in for another round of X-rays and MRI IMG_6259only to discover that it was due to HMS again. No physical trauma, no accident.

While looking at my scans, my Knee Specialist commented,” You know, I don’t mean to say this to hurt you. It’s just so that you get an idea….I’m really sorry, but if I were to put all your scans together and look at them, they’d look like those of an 84-year- old.. not a young, beautiful 24-year-old. We can see it. This is all because of HMS.”

I was able to handle things a bit better.

I just smiled and said, “Yes, I know. It’s okay.”

Left Elbow Instability

In  June 2014, my left elbow got affected. Once again, without any physical trauma or accident IMG_9213(for the eight time). I was sent for X-rays again.

I have always needed to see my Specialists and go for a round of scans and tests, but it’s not as if I  ever came home with any kind of new information or advice.

It’s been the same thing – whatever happened to my joints, happened because of HMS/EDS. Not because I overused them, or worked out a lot, or danced too much, or got into an accident,or didn’t eat enough, or didn’t rest enough or pretty much anything else most people like to think.

Current Situation

I am more accepting of my body’s tendencies. I don’t remember the last time I didn’t feel pain, but I am learning to suffer less. I’m learning to make adjustments in my life so that my body gets what it needs. I am more accepting of the fact that there is no cure at the moment, but I am still hopeful about the future. Accepting my condition seems to be helping me more than trying to fight with my body too much.  I don’t mean to say that I give up and let life take over me – there is a difference between acceptance and defeat. I might want to write about it sometime.

It’s been a journey full of trail and error, disturbing emotions and thoughts and seriously debilitating pain.IMG_3693

Over the past five years or so, I have spent so much time and effort just running around, figuring out solutions, finding alternatives, speaking to gazillion Healthcare Professionals, getting mad at my body and trying to hold my life together. It was all required at that time. These days I try to listen to my body first.

Listening to my body means making considerable changes to my lifestyle. And that also means slowly letting go of some things which don’t work for me anymore. It’s frightening at times, but it’s okay because at the end of the day…it’s all for my health.

I’m getting a hang of it.

Since HMS is a multi-systemic disorder, I have to manage other symptoms of HMS as well. It can get tiring having to think about so many factors at once. I’ve also learned to trust only myself about my body and no one else. Somewhere deep inside, I always knew I needed to keep pushing through…. to keep looking… because things happening to me just didn’t feel normal… and to keep persevering through all the misdiagnosis and judgement… that’s how I finally got some answers.

I  have a small team of Specialists (different ones for different parts) and Healthcare Professionals
helping me manage my condition and pain. It took me a very long time to finally find a group of people who understand my condition, are patient and supportive and who trust me. I call them my little “Support Team”.

I think it’s necessary to find Healthcare Professionals who believe you when you say that you’re in a lot of pain or can’t deal with something. It makes no sense to be working with a set of people who think you could be imagining pain. Also, no matter what anyone thinks, it’s especially important to believe in yourself when it comes to the pain you’re going through and how it affects you – just because someone thinks that you are giving up easily doesn’t quite mean that you are.

I’ve never given up too easily and it’s enough that I know so. I feel weak at times (it’s only natural) but I stand right up again (very slowly sometimes!) and face what I need to. Knowing this, I tIMG_4286ry not to take it personally if someone makes baseless comments about my personality or attitude because of the pain I’m going through. It can hurt for sure, but I also realize that I don’t have it in me to explain myself and my story to everyone. Besides, I don’t believe that everyone needs to relate to it or understand it.

You need a small set of people who trust that you know the best for your body – that’s all.

For now, I work with my body and try not to push it beyond its limit. I still don’t know where exactly this is heading. I don’t have answers for tomorrow. I understand that until there is no cure, until science doesn’t catch up, the only way I am going to be able to get through life is by respecting my body’s  present needs.

                                                                                I know better now, for sure.


Part 5 : The Story Of My Diagnosis

After Diagnosis : January 2013 – December 2013

Part 5 and 6 : How other joints in my body continued being affected + Current Situation


Things went beyond control. Pain was beyond control. I started reacting to my pain medicationsIMG_7636 because the dose was just too high. By then it had been three and a half years since I first started needing medicines. I was vomiting and losing strength day by day. I started developing severe migraine along with all that; it was the type that just didn’t stop no matter what. I couldn’t fall sleep because I was hearing a buzzing sound at the back of my head. Even a stronger dose of migraine pills didn’t quite help.  It was getting freakishly scary and I needed to be hospitalized.

I started seeing a Neurologist then, who changed my prescriptions once again. I needed sleeping pills to fall asleep because the pain in my lower back, tailbone and left arm wouldn’t let me sleep otherwise. He cut down on the painkillers, which made it very difficult for me to function through the day.

I turned into a zombie. Or something worse than that..


Because I needed help with pain management, I decided to see an Osteopath. I was scared of Chiropractors by then but I was okay with seeing if an Osteopathy could help. When I felt that he was also doing some form of manipulation too, I started to feel a little uneasy. I was told to stay away from these things now.

During one of my sessions with him, he did something to my left arm that was enough to make me never go back to him again. However, he was the one who introduced me to Pilates and told me that it was one thing I required for sure. The Pain Management Specialist had talked about it too, but I  wasn’t in the best frame of mind to understand it any better that time.

I started going for Pilates then, but I could hardly keep up with the sessions with that much pain.

I had no clue what to expect when….and when to expect what.

Right Shoulder Subluxation

IMG_1195In July 2013, my right shoulder went out of position. Without any physical trauma or accident. I was still in Business School, so with an unstable right shoulder, things started getting complicated. School was taking away my energy and yet I wanted to continue. I saw my Shoulder Specialist, went through another around of X-Rays and MRI, but there was no new information. We knew there was nothing anyone could do about it. I had to continue Physiotherapy, rest a lot and wait for it to strengthen up one day.

Even though I knew the reason behind why things were happening to me, it wasn’t so easy to just wait till some day to feel less pain.

Right Wrist Subluxation

In October 2013, my right wrist was affected. I still remember how the Specialist just shook itIMG_2311 around a bit and pushed it back in. It didn’t stay in place anyway. He reminded me that I need to get used to this. So since then, my wrist has been dangling off my right arm, which is hanging off my body.

I also had to go for a neck MRI to make sure my neck was okay. It was okay, just not very normal. A bit more wobbly and loose compared to everyone else. The Specialist asked me if I was standing during my MRI because that’s how weird it looked in the scans.

Part 4: The Story Of My Diagnosis

The Diagnosis: October 2012

Part 1: Pain Management Specialist

The Pain Management Specialist sent me for another round of blood tests. These too, were absolutely normal. He looked through all my reports and scans and suggested that I try out Radio Frequency Ablation (RFA), which is a minimally invasive procedure. I had HUGE HUGE H  U  G E expectations out of this procedure. I really thought I’d be okay after that. I was looking forward to be able to live like a 22-year-old again! I was DYING to be pain free.

So in October 2012, I went in for Radio Frequency Ablation ( for seven facet joints and my tailbone. I was sedated and had nine gigantic needles pierced into my joints. Before being sedated, I thought about a few people I loved and I genuinely couldn’t wait to be normal again!

I finally opened my eyes about three hours later, only to notice that my pain had gotten worse. TheIMG_6958 Pain Specialist told me that this was normal, that it will settle soon, and I should just give it about a week or two to really work. I couldn’t walk properly after the procedure. But I trusted what he said and gave myself time. I was taking about eight painkillers a day, plus three anti-inflammatory tablets and six nerve medications. That was the only way I could survive the increased pain.

That evening,  I started running a fever and developed gastroenteritis out of nowhere.  That week I only got weaker.  I was so physically and emotionally drained out. 

Two weeks later, I was still in pain. There was NO difference at all. Nothing seemed to have changed. I needed the same amount of medication, I couldn’t walk too well, I needed a donut cushion, I couldn’t sit, I couldn’t lay down comfortably…

I hadn’t expected this. 

Part 2 : Pain Management Specialist

When I returned to the Pain Specialist, he saw my state and said he wanted to speak to me in private, without my parents around. So the next day, I went back to him for a private consultation. For the first time, I was allowed to speak without being judged. Not once  did he say that I was imagining pain or had low pain threshold. We spoke for about two and a half hours, and I cried so much. I told him I had forgotten what it felt like to be pain free. He asked questions about my family, friends, boyfriend, dance, design, dreams… things that no other Doctor had ever asked me till that day. 

There was really nothing to hide from him, so I literally poured my heart out to him. 

He told me to return the next day (with my parents) with ALL my medical scans and reports since birth. He looked through all of it in detail, checked on my family’s medical history, did a careful physical examination (Beighton Test investigation)and found that I was extremely hypermobile (not just a little hypermobile or a little bendy like other Doctors would say, but EXTREMELY hypermobile) . He asked about my migraine attacks, brain fogs, pain level and fatigue, IBS(Irritable Bowel Syndrome) diagnosis during my teenage years, about my sleep cycle…. and dug out every single detail  that there was about my body from me. He had a never-ending list of questions! For once in three years, I felt as if a Doctor bothered about my pain.

It took him a while to put all the information together. I remember getting anxious looking at him. It was some 18-19 years worth of information that he needed to string together in order to finally tell me what it was. 

I don’t think I can ever forget that day. He sat next to me, held my hand and said, “I know what this is. HMS.  Hypermobility Syndrome. EDS Type 3. Let me explain…”

I remember exchanging a totally confused look with my parents at that point.

As he explained the condition in detail , it felt like everything was suddenly falling into place. After YEARS of our effort trying to figure out what was wrong with me….. everything started making sense. It seems I had been showing symptoms of HMS since I was a child and we didn’t even know! We didn’t even know such a thing existed until that very day! 

(I’d like to write a separate post about the symptoms and all other bits and pieces of information that needed to be put together in order to reach a conclusion.) 

For once, I found a closure. It was SUCH a relief! But then at the same time, I stepped into a world of total uncertainty. I couldn’t quite imagine how things were going to turn out from then on. I can’t explain in words the kind of contrasting emotions I experienced at that moment.

We FINALLY knew what it was. But we also knew it had no cure. No fix.

*Part 5 and 6 : How other joints in my body continued being affected + Current Situation

Part 3: The Story Of My Diagnosis

February 2012 – September 2012

Part 2: Tailbone Shift

Around February of 2012, I decided to see another Spine Specialist (a much more senior person) to get a second opinion about my tailbone. This Doctor tried to convince me that I was imagining extra pain. That it was all in my head. He said a little bit of pain was normal, but the amount of pain that I felt was too abnormal to be true. He said people do dislocate their tailbone , but they recover  fast and the fact that I wasn’t recovering, was my problem. He increased my medication but that didn’t help either. When I said the medicines weren’t helping, his reaction was, “You say my medicines aren’t working. YOU tell me why they’re not working!”

By April 2012, my pain reached its peak. I was sick of Doctors and Physiotherpists and I was beyond sick of explaining my story and trying to justify that my pain was real. I knew that my pain was real because I felt it. I had pain shooting down my legs! My butt was hurting. I used to carry a donut cushion because each time I tried to sit, I felt the same sharp pain .It was painful to stand! It was painful to walk! No matter what I did, the pain wouldn’t leave me.

I spent a lot of time online looking for solutions. I wanted to know whether what I was experiencing was anywhere close to normal. I used to feel ridiculous about my pain, especially because my Doctors didn’t believe me. It was all messed up. Knowing that I really was in pain, and then being told “you’re imagining it” used to drive me even more insane.  I came across someone online who recommended taking corticosteroids in my tailbone. I did my research and found that many people felt instant relief after taking corticosteroids. I went back to the Spine Specialist to speak with him about it, to which he said, “You don’t need it. You’re so young! Nothing is wrong with you. You don’t need to take it. You guys! You youngsters! You think you know better than us.” I know he was much older, but I don’t think it mattered at that point. I told him that I didn’t care if he thought I didn’t need it – I WANTED it.

So I took corticosteroids in my tailbone.(

Injections deep inside my tailbone. Imagine that.

He told me that it was normal if my pain increased a little bit, but in less than a week, I would feel better. One week later, I went back to him, still complaining of pain in my tailbone, lower back, butt and legs. The whole of my lower body just didn’t stop hurting. He was almost angry to see me again and said, “Didn’t I tell you that you don’t need it? Please just give it time to heal. You young people!” I told him that I was considering leaving Design School because I couldn’t deal with the pain anymore. Because I didn’t think it was possible to get through such a physically taxing course in SO MUCH PAIN. His reply to that really made me lose some respect for him. He said, “You’re giving up! So easily. Why? Just because you have pain? I don’t understand your generation you know? You guys take everything for granted. How can you leave your course so easily? You say it’s your passion and you want to give up? This is not done. People like you just don’t want to try hard enough. Just because of pain! A bit of pain!”

Deciding to leave Design School was one of the hardest decisions I took and if anyone thought that it was any where close to easy, I think they’d be very very wrong. Having a doctor tell me that I was giving up too easily was simply demoralizing. But I decided I didn’t need his opinion.

I was starting to freak out. I couldn’t tolerate my pain anymore. Life was changing too fast and I didn’t know what to do. Through all this pain, confusion, frustration and craziness, there was still something inside me that wanted to figure this out. I had a strong feeling that there was something more serious happening inside my body.

During this time, we were also speaking with other Orthopaedic surgeons over email and Skype. I consulted a couple of other surgeons in Singapore too, but they had no clue what was happening to me. I was treated like anyone with sports injury.

The only “sport” I was doing back then was to walking around my house.

Part 1 :Herniated Disc at L5-S1

A week after that, I went back to the Spine Specialist and literally DEMANDED to be sent for an MRI and X-ray. He should have sent me for the scans himself, but he wasn’t doing anything expect discouraging me.

 My scans showed that I had a herniated disc in my lower back. The Specialist said herniated discs were common and I didn’t need to worry. I just needed to continue Physiotherapy and take medications to help with the pain. I asked him WHY this was happening to me. All he said was that it happens sometimes.

It happens sometimes?

Left shoulder, tailbone and now lower back. No one knew why. Some people thought I was working out too much(or dancing too much), which just made no sense.  I could barely walk! It used to make me really angry when people said things like I was in pain because I wasn’t eating right. People started giving me all kinds of advice that I didn’t need or ask for.

I was really running out of patience.

Part 2: Herniated Disc at L5-S1

I was desperate for answers that made some sense. I needed real advice. I needed to know how to feel better. It had been a year and a half since my shoulder operation and about three years since I felt no pain. I was starting to forget what it felt like to be painless.

I went to see another Spine Specialist around June 2012. He was so upset with the amount of pain medicines (and the type) I was taking so he changed the prescriptions. He put me on nerve medications instead. I still needed painkillers and muscle relaxants along with that. He told me that there was a need to break my pain cycle. It’s not as if I didn’t know that! I needed to know HOW to do it. I needed to know WHY I was in pain and if my body was okay. I was told to start cycling (stationary) in order to strengthen my back and to watch my weight because that could make things worse. There was no way I could do any form of workout, so I did nothing. I was just constantly in pain.  Sometimes I’d find myself wondering if I was even living MY life.


I saw two different Homeopaths in Singapore around that time. My parents believed that this would work so I tried.  I didn’t notice any change.

Part 3: Herniated Disc at L5-S1

In September 2012, we decided to fly to India to meet more Doctors and Specialists from Mumbai and Pune. They patiently looked at my reports and told me things I already knew by then. They  believed I was too young to be in pain. I was told I didn’t need a surgery so my next option was to take Epidural injections in my lower back. My pain was really starting to take a toll on me. I  don’t know how I was surviving through that much pain…

We must have seen about five Doctors plus another Homeopath in India.

We got back to Singapore and went over to discuss other options with the new Spine Specialist that I was seeing. He referred me to a Pain Management Specialist.

Part 2: The Story Of My Diagnosis

January 2011 – December 2011

Part 2: Left Shoulder surgery

The strengthening exercises  made the pain even worse. At times I couldn’t feel my arm at all! I knew it was hanging off my body but I don’t know how it was doing it. Within three weeks of my consultation, I was back to the Specialist signing documents for Inferior Capsular Shift Open Surgery. I didn’t need to think anymore. I made up my mind and convinced my parents that I wanted this. I was tired and frustrated. I thought I had been patient enough.

So, end of January 2011, with a lot of optimism, I went under the knife . People usually take about six weeks to completely recover from this operation, but I took close to a year or longer. I was taking six muscle relaxants plus four painkillers per day! Also, most people are able to start with rehabilitation within three weeks but I couldn’t. I was trying to be very calm even with the increased pain from surgery. When I went back to the Specialist after about eight weeks, I was told, “You know, you’re the only patient I’ve come across in my entire life who is taking so long to recover from this operation. Maybe you’re just not able to handle the pain. I think your pain threshold is rather low. You need to be more patient with it. Let it heal, you’ll be fine. Look, if you can’t handle this pain, how are you going to handle childbirth?”. I’m not sure if I cared about childbirth at the age of 20 and a half. I don’t think I did. I just wanted to recover and get back to studying Design.

Twelve weeks into the surgery and I was still in as much pain. The only, and the main thing, that had changed since before the surgery was that my shoulder didn’t “pop” out like before. It felt like it was in the socket, fastened up. Pain wise, there was no difference. Not even a bit. I still felt pain running down my entire arm and it would turn icy-cold at times. When I talked about this to the Specialist, he would tell me that he had done his job and the rest was up to me — I needed to continue with my Physiotherapy sessions and the exercises, increase my pain threshold because childbirth was going to be worse, and I needed to be EVEN more patient with my pain.

Around this time, my parents were also starting to get really impatient (and confused) with the situation. The Specialist said I was fine but I said I was not. My shoulder wasn’t hanging off, but I complained that my pain wasn’t reducing. My parents saw me in pain, but they just couldn’t relate to the intensity of it all.

Break from Design School

Around July of 2011, about five months after my surgery, things were still unclear. I was still in pain and still needing medication. I didn’t like how it was starting to affect my life at Design School. I completely disliked the fact that I sometimes had to hand-in projects that were totally below my personal standards. All this was just so not ME. So, I decided to take a year’s break to figure out what was up with my left arm and give it all the time it needed to fully recover. Even though I wasn’t too happy about this, I was so positive that a year later, things would all be perfect and I would be pain free.

Acupuncture and Chinese Medicines

By now we were going all over the place, looking for and trying anything that could possibly work for me. I started seeing an Acupuncturist, who I had a lot of difficulties communicating with. I don’t even remember the kind reasons she gave to me for my pain. But because I was so desperate to feel better, I decided to believe her and give things a shot. I had needles on my ear, on my elbow, in my temples, on my neck, in my little toe, near my belly, on my wrist and basically at places I didn’t think could have any connection to my actual shoulder. I don’t think it helped with the pain even a bit; in fact, I started developing fever after each session. I was told that it could be a form of release effect and that these things are normal in Chinese Medicine. So I continued acupuncture about twice a week, and suffered from fever and exhaustion the other five days of the week. I was too tired for anything else then. I used to love being outdoors but I needed to spend more time in bed. After a few weeks, we decided to try another Acupuncturist to see if I had similar reactions, and I remember feeling exactly the same even with her. Through all the piercing and high fever, my pain stayed. I think I was given all the information about my body I didn’t really need at that time. None of it sounded as if it related to the pain I was experiencing. I was told I’ll be fine too.

After about three months of trying Chinese Herbal Medicines and Acupuncture sessions, I decided to discontinue both. Running a fever through out the week and feeling fatigued all the time was no where close to normal. It’s also not as if any of it was helping with the pain. Plus, it was almost five months into my twelve months long break from Design School, so I felt the need to keep looking for other solutions.

I was still very hopeful.

Some weird guy

I was told to see this person who supposedly used his “chi” energy to make things okay. My Mom and I went over to his place and were a bit shocked to see what he was doing. I don’t think I fully understood what was happening but what he did worked like the electrodes used in Physiotherapy. Except, the electric current was somehow generated by him (or something like that)……

Didn’t help. It was just weird, that’s all.


My Dad’s friend’s wife was diagnosed of Fibromyalgia around that time, so he started to worry that I might have the same. We looked through all that there was to look through about Fibromyalgia and thought it was time to meet a  Rheumatologist. He sent me for blood tests to see if I had any sort of Auto-immune disorders, and the tests were all negative. He did a physical examination, checked my mobility which he thought was a little more than others(but that didn’t seem like a reason to worry because I was a dancer?) and thought that I needed to get the knots in my neck checked by an ENT. When I talked about pain, he said, “But you look fine. Your weight is okay, your diet seems okay. The thing about you is that it’s not just your tender points that hurt. You say so many things hurt and that you’re tired. I understand that, but there really is not reason to feel tired. I don’t really think it’s anything – your blood tests are fine. You have a little bit of Vitamin D deficiency but I’ll give you tablets for that. You’re fine. You look fine. I think you are a minor case of Fibromyalgia. I’ve seen people with Fibromyalgia and they look a lot worse than you do! I think you also have Chronic Fatigue Syndrome.”

So I didn’t have any Auto-immune Disorders, my weight was okay, my knots were probably just an infection of some sort, I was tired because of CFS and maybe I was just a minor case of Fibromyalgia because I looked fine.

Ear Nose and Throat Specialist

We got the knots checked the next day. The ENT Specialist didn’t think it was any kind of infection. He said they were probably just my lymph nodes swelling up, but that can happen. I was told if they’re so painful, they’re probably not harmful and if I wanted to be sure, I needed to go for a Biopsy.

My parents and I decided that it wasn’t necessary. I don’t think I felt a pull towards getting that checked.

I just wanted my left arm to recover.

Yoga Therapist

So in December of 2011, eleven months after my shoulder operation, I was STILL in pain. It was annoying. I started seeing a Yoga Therapist who put me on a routine right away. I had a little Yoga Journal where I noted down my pain score, activities and my emotions. She looked into my diet and made slight changes. She thought I needed to eat more prunes…

Part 1:Tailbone Shift

So while I was still seeing this Yoga Therapist, STILL taking pain medications, STILL trying to smile through pain.. something else happened out of no where.

I was sitting on the floor in my living room, playing with my cat and just as I tried to get up, I experienced a sharp pain right at the tip of my tailbone and it shot right up into my brain. I am still surprised it didn’t cause my brain to explode. It was so sharp that I couldn’t move! It felt as if someone had pierced a big, long, needle right in my tailbone and it was stuck right there. I had tears running down my eyes and I felt faint-headed. I somehow walked myself to the sofa and didn’t move all day.

By evening, I was running a fever. I was feeling physically weak. My parents and the Yoga Therapist thought it was no big deal. That it was probably just a viral fever causing my joints to hurt and that I would be fine in a day or two. A week later, I still wasn’t okay. I was still in so much pain and I could barely walk around. The Yoga Therapist came over to check on me and she said,” We need to work on strengthening you arm for sure. But for now, let me teach you some exercises to relax your back. It will help with your pain in the tailbone, which I’m sure is only because you’re running a fever. You see, when you have fever, your body is basically inflamed and when there is so much inflammation in your body, of course there will be pain. So give it a while, my dear. It’ll be alright.”

I now see that it could have been the other way round!

I had started to feel that there was something terribly wrong. When I touched my spine, I would feel as if something had moved. For the first time, I felt some sort of fear.

Something told to not listen to the Yoga Therapist anymore…

So I convinced my parents to take me to a Spine Specialist. I had to go through another round of X-ray, which clearly showed that my tailbone had moved out of position. I was asked if I fell down or had any accident and when I said no, I was told this happens to people some people – some people who can be a bit more bendy than others and that there was nothing to worry.  I was told it could have been my dance, but honestly, it had been months since I did my last stage performance. So besides telling me that I was really beautiful and that she (the Spine Specialist) would love to marry me to one of her sons, she said I needed to do Physiotherapy and  take muscle relaxants and anti-inflammatory.

I was already taking pain medications and muscle relaxants and nothing was helping! I was in excruciating amount of pain.

Once again, I started seeing a Physiotherapist for my tailbone. This lady told me that I would be fine within three week of seeing her and that didn’t happen. I saw her for six weeks and I was still in pain, still unable to walk, still surviving on pain medication and still as confused about what was happening to my body. This was my second joint that had moved out of position without any accident or physical trauma.

It made no sense at all.

Part 1: The Story Of My Diagnosis

August 2009 – January 2011

Introduction To Pain

It all began in 2009 when I first dislocated my left shoulder.

I didn’t even know it was possible to dislocate a joint! I just noticed one day that I could “pop” my left shoulder in and out of its socket, without any sort of pain . It was just something Manasi could do. My friend used to freak out seeing me do that. Things were perfectly normal – I was studying Design, dancing and performing, and having a pretty normal life of a 19 -year- old.

One day I was at Design School, happily working on a clay model of my face. I still remember that day so well – my friends and I were laughing about how I would mould out my curly hair using clay and just then, (I can’t put this in any other words because this is exactly what happened) my left arm dropped on my working desk and I felt acute pain shooting down my arm from my left shoulder joint. I had NO freaking clue what had happened and I almost stopped feeling my left arm after. It turned completely numb and I felt as if I was carrying dead weight. I pulled out my scarf and made it into a sling type of a thing to hold up my left arm. I  just left class right away and went over to see my family Doctor.

My family Doctor thought it was just some sort of a muscle pull so she gave me muscle relaxants and told me that I only needed rest. Since I was in Design School, it was very common for Doctors to think that I was only straining my muscles. Just as I was about to leave, I showed her how I could “pop” my shoulder in and out. That moment when I did, the pain was so terrible that I almost had tears in my eyes. She saw that and knew something was wrong. I think that was the point where my life took a major turn and I was in the hospital the very next day, running for X-rays and MRI.

The MRI showed major subluxation in my left shoulder joint. It was a strange kind of dislocation they said – because till before that day, I was able to “pop” it in and out without any pain.  What was totally weird was that it happened without any accident or physical trauma as such. It just slipped out of its socket. They somehow didn’t think that I needed a surgery and I was told to go for Physiotherapy to strengthen my shoulder joint. And, I was also told to not overuse my arm at Design School and make sure I didn’t use it too much in my dance.

So I started going for Physiotherapy and  with each session, the pain just got worse. The Physiotherapist would tell me I was getting better, and that I should continue to do the rubber band exercises and use my left arm to push against a wall (all the strengthening exercises basically). I didn’t believe her because I could see that I wasn’t getting better. I hated having to go to Physiotherapy when after each sessions instead of feeling any relief, my pain just increased. With that level of pain, I needed muscle relaxants and pain medications in order to complete my projects at school. I started needing my family to help me with my projects, I needed help to carry my Design tools etc, and it didn’t feel good- till that time, I was  be able to do everything myself.  I loved doing everything myself. My family could see that I was in pain, but I don’t think they could imagine the severity of it.


One day while I was busy tying up my arm, a lecturer came up to me to have a small chat. She said she had been observing me for a while and could really see that I was in pain, and that she knew a Chiropractor (never knew what that was!), who I should really see. Because Physiotherapy was doing nothing but adding to my pain, and  because my work was getting a little affected, I was ready to try anything that would take the pain away. By then I was taking about four muscle relaxants a day! So I went to this Chiropractor with a lot of hope. We all know what Chiropractors do – all the cracking, and manipulation of joints and moving things around – yes, all of that was done on me. I was told that I would need about three sessions per week of whatever he was doing so that I get better. I believed it and went through all of it, because I just wanted it  to be fixed. I saw this  Chiropractor for close to a year, going for three sessions per week. I would come back home feeling ready to work on my Design projects and within an hour of so, my shoulder would feel loose and painful again. I was still taking my medications because I couldn’t see a way out  – if I wanted to get through the work I genuinely enjoyed doing, I had to take my tablets. If I wanted to function like a 19-year-old, I needed to take the pills. Not that they took the pain away or helped push my joint back in.

By then, my life was starting to turn a little bit abnormal. Just a little bit, in comparison to the unbelievable change it went through over the years since then. I was starting to feel tired more easily, I couldn’t dance as freely and things slowly started to seem different. My parents and I were still under an impression that this was just a one-off thing and that I would be okay soon.

Part 1 :Left Shoulder Surgery

I was on a family holiday at Ramthambore (a place in India well known for tiger spotting) in December 2010. I was so excited to be able to see wild cats around me!But even through that excitement, I couldn’t distract myself from the throbbing pain that I was feeling. We were out in a jeep one day when my left arm fell right off the socket again! I had my scarf, so I tied my arm up again. I remember crying that day. I don’t think I had cried in pain before that. I used to write about it, but I never cried. No matter how painful things were, I could deal with it. But that day, no. That was the time I felt that things were getting a little bit unfair — not being able to enjoy wildlife was extremely unfair. Not being able to easily complete my Design projects like before was unfair. Not being able to use my left arm in dance was unfair.

We really didn’t think that the jerks from going on a safari jeep could hurt me so badly.  But it did. It totally rattled my shoulder joint out of position. I didn’t need to be hospitalized, but my shoulder was sort of hanging off my body.

So as soon as we got back to Singapore, I went over to see the Chiropractor. When he heard my story, he said, ” Yes, that can happen. I told you, you have to come to see me every other day. Your condition needs servicing. Your shoulder needs maintenance. You have to continue to see me regularly.” That’s when I asked him a question, which I should have asked long back – WILL IT EVER GO BACK INTO POSITION AND STOP HURTING ME SO MUCH? He said he didn’t know.

That was it. If someone told me I needed to see that him thrice a week without any sort of a guarantee that I’ll be okay, then I didn’t need to see that person anymore.

I  didn’t know what was going on.

So the very next day, my parents and I went to see another Shoulder Specialist. We had already gotten a second opinion, so this was for a third opinion. I really needed to know what was happening to me. I didn’t want the pain anymore.

I was still thinking that this would be a one-off thing.

When I saw this Specialist, things started to make some sense. He explained to me how multi-directional shoulder instability can cause it to “pop” out etc.  and gave me two options – either I continue doing the rubber band exercises and wait for my shoulder to strengthen up some day (not sure when) or I go for a surgery which would practically tie the joint up internally. He let me make the choice, but I clearly remember the look on his face that said I needed a surgery. I remember him telling us that my shoulder had become really loose.

I had also started developing some knots around my neck around the same time. My neck felt bumpy and the knots used to cause a lot of pain and discomfort. At times they would swell up and that’s when I literally couldn’t do anything. It felt like I was in a neck brace, a bumpy neck brace .The Specialist had no clue what this was but he didn’t think it was harmful. He was quite sure that would be okay after the surgery.

My parents suggested that I give yet another shot to the rubber band exercises before I opt for open surgery. My pain was unbearable, but I decided to give my body one last chance before going under the knife.

The Saree Secrets.

Just a couple of weeks back I got a chance to wear a saree after ages . I’m not sure what it is with me and sarees but I have a thing for them. I’m yet to figure this out :) I think I was fascinated about wearing sarees (since 13 or so!)way more than being able to drink, drive, party or anything else people are generally excited about around that age.

Thank God for self-timer!

Being in Singapore, you don’t always get a chance to wear all your beautiful Indian clothes which are otherwise just catching dust. I have always liked wearing Indian clothes so there were times I would just imagine an occasion for myself and wear kurtis and patiallas to Design School, or be the only 17-year-old wearing a black and turquoise saree at a New Year’s Party.

I thought Arijit Singh’s concert was pretty decent an occasion for a saree! It seems it was also the Rare DiseaseIMG_3451 2s Day. I didn’t know about this till the next morning, but it was surely a big enough reason to wear what felt good. I chose to not wear a sling that day – I let myself do this sometimes. Only SOMETIMES.  So when I  do make a choice like this, I am usually prepared in other ways — 1. I had taken extra pain medication, not just for my shoulder but because the night before I couldn’t get a decent sleep and that made my lower-back feel worse. 2. I  had spent the earlier part of the day being even more kind to my right shoulder, lower-back and knees, and 3. I was out with friends who knew my condition a bit better than the rest, and that always helps. 

With a lovely golden blouse, an elegant black saree, matching earrings and accessories, I think I looked like a perfectly normal young lady on the outside. The truth is, all the not-so-normal things were underneath my saree giving me the right kind of support I needed for that night. And no one even knew!


I wore my Hush Puppies Body Shoe. All I can say about them is that they’re really ugly but useful. They are not anti-slip, which is scary, but they’re so amazingly comfortable to walk in. I threw away the black pair just a few days back so I had to wear the brown ones.  And of course, my knee guards! There is no being out at a concert (or anywhere) without them!

On the days I need to be out of the house for longer or make sure I don’t need to be carried around by someone, I must have proper footwear. I need shoes which provide me with right kind of support for my high-arches. I need shoes which give my feet enough cushioning so that my lower-back doesn’t cry in pain later. And, if I want to reduce the chances of my kneecaps dislocating even by a small percentage, I’ve got to have my knee guards on. It’s not as if I feel no pain just by wearing Orthopaedic shoes and knee guards, but it’s just that if I didn’t do these things, managing my pain later gets almost close to impossible. I have gradually become okay with the need to wear ugly shoes (sometimes!) with a saree or black knee guards with a short skirt.

About six months back, I threw away my entire collection of heels – right down the chute, one pair at a time. I used to love wearing heels! I could even dance in them easily if I felt like it.  I cried quite a bit that day because it was a massive step forward. I really cried a lot. I let myself cry a lot. I think it’s natural to feel sad each time you have to let go of a part of your past – it’s like giving away a piece of yourself or your old self. I had those shoes in my wardrobe for far too long! I was holding onto the hope that someday, I’ll be able to walk in heels again. Sure, someday I might be able to! But that someday isn’t today. Or tomorrow. Or anytime soon. I realized I was only making things difficult for myself. I wasn’t letting myself accept my changing body and  my new needs. I had to let go of those shoes so I could let go of memories that were holding me back.  And I did.


The next day I woke up feeling lighter and emptier in a good way. I still felt a sad. But it felt like I had more space in my heart for something new. Anything new.

I had the most amazing time at the concert, even though I was wearing ugly brown shoes that didn’t match my saree at all. I don’t think it even matters that much to me anymore. I’m not always wearing shoes that don’t go with my clothes, but when I have to, I try not to let that drag me back into the past. Really, if it weren’t for these ugly but useful shoes, I wouldn’t have been able to enjoy the concert as much. I got a chance to wear a saree, take lots of photos, watch Arijit Singh perform live and have a nice dinner with a group of close friends after that. I think that was enough for me to say that I had a brilliant day! I had to deal with extra pain later but that’s okay – that’s just how it is usually. It takes me a couple of days to recover from being out at such events.

Slowly but steadily, I’m starting to let myself be what I am right now. It’s not as if I don’t feel bad when I have to pick unattractive Orthopaedic shoes over gorgeous high-heels or make any such choices, but I surely don’t hate myself for having to make these choices. The times I feel upset about these things, I just let myself be upset for a bit. After a while, I come back to respecting the fact that I have a rare body with really rare needs.

Part 2: So, what do you do all day?

“So, what do you do apart from  just  looking after yourself?”

This question usually follows the one in Part 1. I don’t always need to answer this but I’m surely learning how to tackle such questions these days. It’s usually a stepwise process in my head.

So, at least for this very moment, for today, for NOW…I do these things other than just looking after my physical body.

1. I spend a lot of time building my mental and emotional strength. Being physically fragile changes things drastically but being mentally and emotionally weak makes things a whole lot worse. I don’t believe in rushing through certain processes in life. They’re meant to take time and it’s best to be patient. I like reading about things that make us human.

2. I try to keep myself updated about my condition, the medical research that’s taking place around the world for HMS and  basically about anything that could possibly help me manage my condition better.

3. I also love reading up on general health and well-being, natural remedies and complementary therapies.

4. I spend time journalling and writing, because I think this helps me get all the thoughts and emotions out of my system. I think a lot sometimes, which is good and bad I guess.

5. I listen to music. Mostly Bollywood of course! I like songs with deep meanings. I end up listening to most on repeat. There are a few English songs that will be my all-time favourites.

6. I dance a bit. I get excited listening to fast Bollywood songs. At times I can’t control myself and just need to move with the music. I dance in front of a mirror, making sure no joints fall off. It makes me really really happy and reminds me of how much I’ve always loved the stage! My dance these days looks nothing like before, but that’s fine. I see myself and laugh. Sometimes I stop to think if there are any chronically ill-friendly ways I could do a particular step, but I usually don’t experiment with this.

7. I try baking or cooking new things. I figure out ways to prepare easy meals which require minimal physical energy to put together (and require less cleaning later). I find creative ways of doing thing without too much stress on my joints. It’s also a  bit of trail and error. For example, I have been experimenting with using scissors verses knife and stuff like that. This is fun!

8. I make intricate patterns using all kinds and thicknesses of markers. I find some kind of a stillness in doing this. I make them as and when I can. Sometimes I need to put on my wrist guard in order to do this and I try to give myself a break every ten minutes (which doesn’t always happen). It can hurt like crap, so I only do this on the days I’m very well prepared in my brain to be okay with the pain.

9. I love to create new things – I spend time conceptualizing ideas for new ergonomic products. As I understand my health a bit more day by day, I see what might work for others like me. I can’t always draw these things out, so I make mental sketches. Something is better than nothing, right? Other times I quickly put these ideas down on paper in words. Someday, I might enjoy working with someone who does all the physically draining parts of a design process and create a little portfolio for myself.

10. I make sure I speak or meet with people who care. I can’t quite keep up with the entire world anymore, but I try my  best to keep up with the lives of those around me who matter to me.

I just can’t handle small talks, so with others, my conversation  ends at “I’m alright! Thanks!”. With some, I try pushing the conversation forward, but it starts to sounds stupid after a point. It’s usually something like “The grass is so green!” Or “Wow! The beach water is salty!” Small talks are not meant for me. Period.

11. I watch TED Talks. I can’t ever follow through daily soaps so I prefer this.

12. I switch on the TV and flip through all the channels. I was never a TV person so I get bored too fast. I watch a bit of everything, unless I find something interesting on TLC or National Geographic Channel or Animal Planet or if I find a movie I feel like watching.

13. I look around for ways to give back to the community. But I think that I’ll do this better when  I’m able to give back to myself first. It doesn’t stop me from looking around though. There are a few things I care about deeply so when I think I’ve found something I’m able to handle or feel ready enough for, I’ll do it. 

14. I play around with my cat! I love him. Besides, research says that playing with your pet keeps your energy levels high and makes you feel more at peace. Sometimes I feed stray cats. And sometimes, I look for nice owners so I can play with their dogs :)

15. I go for a walk without any particular goal in mind. Just a suuuuuperrrrrr duuuuperrrrr slowwwwww walk. I see new things each time, I come across new places and new people. This type of a walk is more just to open my senses to what’s around me, and less as an attempt to stay  physically active. I take lots of photographs and selfies :)

I’m starting to understand that no matter what all of this sounds like to anyone, it doesn’t change where I am today. It’s normal to be judged by most people, especially if you look like you do nothing all day. And even more so if you actually look fine. Deep inside, what really counts is how productive you are for yourself.

Sometimes people don’t see that my productivity level, as someone with rare illness, is not and just can’t be the same as most around me. There is a high possibility that not everyone will see this and I’m coming to terms with it. I remind myself that as much as I look normal and attempt to do normal things, I have different needs. This means that what I do through the day will not look anything like what most people do. There shouldn’t be any comparison in the first place.

I remind myself that my aim right now (RIGHT NOW AT THIS VERY POINT IN LIFE) is to learn about myself, learn my needs, understand m8e1fc2faae7bf26cb9f8f246bcdfc1d2y body even more and keep going. That’s it, keep doing my best and keep going. This is my journey and it doesn’t have to make sense to every single person I meet.

We all have our own things to deal with. We’re all on our own little journey.

It’s extremely challenging for me to do less these days.Since I’ve been a workaholic all my life, slowing down all of a sudden, not running after deadlines like a mad dog and making sure my day is a little less productive (in other’s terms) is WEIRD AS HELL.

For the longest time, things felt abnormal. Like, whaaaaatthehelljusthappenedtomylife. Things still feel abnormal sometimes! That’s why, when I’m asked “What do you do these days?”, “What do you do all day?” or “What did you do today?”, my answer usually is “Nothing much, I’m just trying to be less productive.” The story is too long for anyone to know right there. Giving this response has been helping me a bit because I think it keeps me calmer. I’ve tried explaining myself and my situation to people so many times before and have been greatly disappointed with their reactions. Saying  something like  “Nothing much” allows the other person to decide if he or she wants to know more.

So, going back to where it all started, when I find tiny blocks of free time after doing what I must do for my body, I try to keep myself busy with things that ground me in the present moment, bring a smile on my face or make me laugh, and help me look at where I am in a slightly better way.  That’s what I do all day.

Broken Eggs Crisis.

So here’s what happened about a week back.

I was just about to leave home for Pilates. I had a plastic bag on my dining table, full of stuff I didn’t need anymore. Well, it also contained a pack of eggs. JUST as I went to get my phone from my bedroom, that pack of eggs slipped out of the overfilled plastic bag and… yes, within less than two seconds, I had five broken eggs all over the floor…yucky, oozy and yellow…and… SMELLY…. I mean, I can’t  stand the smell of egg yolk while I make omelettes so this was… let’s just say…probably one of my worst nightmares.

I don’t think I had ever stopped…..(in my life of 24 years)… think what I’d do if something like this were to ever happen.

So I looked at that mess and wanted to puke. I got a slight panic attack, but I told myself that I need to learn to fix this. Such things can happen in life. Anything can happen in life, right? So I calmed myself down and decided to do this in a strategic manner. With that mess on the floor and my knees in guard, and my right shoulder barely out of a sling… I didn’t want to bend down too many times or use my arms too much!

SO. Since Google usually helps with most things (right?), I searched how to clean broken eggs. Yes. That’s exactly what I typed : How to clean broken eggs.

…..and why wasn’t I surprised… people had searched for it before!

It said : “Put a generous amount of table salt on the broken eggs and let it stay for about 10 minutes.”

I got too generous with my salt. I poured 1/4th the pack of salt all over it nicely, covering practically the whole thing. I let it stay for about ten minutes while I wondered about the chemical reaction that was happening between the eggs and Sodium Chloride…on my floor.

Reminded me a bit of the chemistry experiments we did back in school.

So after about ten minutes, that stuff had hardened up (the salt absorbs the liquid and solidifies the egg) and looked way more bearable. All I needed to do then was to bend my knees just once, use a broom and scrape the hardened egg plus salt combination out onto a dustpan, and then mop the crap out of the floor using 1/2 a bottle of Dettol. Oh yes, I sprayed 1/2 a litre of air-freshener all over the dining hall after that.

I didn’t think I needed Pilates anymore. I am trained to do a lot of functional movements at Pilates and now I very well know why.

Legwork – done
Glutes – done
Shoulders – done
Lower back – done

All checked, all used. There was no need of Pilates. I was tired as hell and all I needed was my bed and my hot bags.

Frankly, I thought this was a fabulous solution!  Had I tried to clean that up with anything else, I would’ve taken much much longer AND I would’ve hurt myself. Plus, I probably would’ve made the mess worse with my puke.

For most people, cleaning broken eggs would be disgusting. But just disgusting. For me, it was more than just disgusting. With it being disgusting beyond my tolerance level, it meant more effort. More effort meant more energy. More energy meant more spoons. More spoons meant more decisions. More decisions meant I may have had to cancel my Pilates. But I didn’t. My Pilates session turned into a half-physio session with my trainer releasing all the tight muscles.

No matter how easy it sounds to clean five broken eggs off the floor, I have to think of making it even easier than that. We say there’s no easy way out for most thing, but these days I don’t care if I waste time to find easier ways out for myself. Maybe that’s the whole point of everything anyway. We have to keep figuring out ways, our “special” ways, to get through things – even if that means to see what Google says. At least it prepares us better for the next time.

Part 1: So, what do you do all day?

“You don’t work? Okay…Then what do you do all day?”

I get this question quite a bit these days.

It’s a valid question, I get that. But it doesn’t have a simple answer. Or wait, it DOES have a simple answer….. but it doesn’t necessarily make much sense to everyone.

I look after myself.  

Looking after my body feels like a proper full-time job. In fact, I sometimes even do over-time :) You see, I have to be responsible for every action, I have to “present” things to doctors and therapists, I have to do all the things that I need to do everyday to make sure things go as per my personal plans etc, I have to manage profit and loss, and guess what? I get paid too (in a different way, that’s all) — if I do a good job, my joints feel a tiny bit better, I’m able to manage the pain slightly better and sometimes I’m left with enough spoons (search Spoon Theory by Christine Miserandino) to meet people and do other things instead — and this feeling, when you have a rare illness, is almost as good (or better) as getting paid. I have worked before, so I think I know.

“So hold on, don’t we all look after ourselves?” That’s the next question.

Yes, true – but it’s really not the same.

Most people can look after themselves however they wish and still have time and energy for other things. Someone with a rare body is rarely ever left with extra time or energy for other things after they do what they must do. Over the years, I’ve gotten all sorts of responses from people when I say that the way I need to look after myself is so different from the way they need to. It’s just been a learning experience.

6588d03e304635e55046250a21bc6f4cI usually talk about the MAIN things that I HAVE to do in a week, which are, Pilates and Physiotherapy. I love both and need both. But those are obviously not the only things I have to do or do. There’s more to it that makes looking after my body seem like a full-time job.

So these are the things I usually do no matter what. It doesn’t matter if it’s cloudy outside, or I have a plane to catch, or my friends are coming over, or my homework (or work) is not done or Jacqueline Fernandez is in town – these are the things I need to do for my health, so I try to do it with full commitment.

1. I make sure I walk a little bit everyday, but I don’t force myself too much. I’ve been told not to bother about the speed so I try not to care. I can’t run like before, and neither can I gym or cycle by the beach and that’s why, I’ve fallen in love with walking. It makes me feel as if I am doing something physical at least. Plus, walking helps keep my muscles active – which is something I need.

2. I  take all my daily medications and supplements at the right time with the right kind of food – I’ve gotten terribly sick before when I couldn’t keep track of my medicines and the time between them. This can change your schedule drastically so you’ve got to be aware of what sort of a medication to take when. You also need to consider their side effects.

3. I cook healthy and nourishing food for my body. I have to be very particular with this because my body reacts instantly to some things. I take my time to cook things.

4. I groom myself well. It take some effort but it makes me feel good. And if that’s the case, it’s worth it. It’s a choice I make each day. The reason why I think this is part of my list of things I need to do is quite simple – if I don’t challenge myself to get out of bed, shower and bathe, look decent and put on my eyeliner(or matte lipstick), I’m quite sure I’d be in bed for the rest of my life. This bit is psychological.

5. I make sure I do all my oil massages, use hot packs or cold packs a couple of times a day(sometimes more than that!). I apply different ointments on different parts of my body and try to give my joints the support they need in order to keep me going. Sometimes I need  hot shower or bath thrice in a day!

6. I go to the pool when possible to do basic hydrotherapy. I can’t swim like before so I walk around in the pool like a grandma. Wait, no. I’ve seen some grandmas do full laps while I do what I do :)

7. I make sure I take time out from looking after my physical body, in order to look after my-SELF. My mind and my heart. If I didn’t do this, I’m quite sure I’d be dead by now.

8. I have to get my daily afternoon nap because if I don’t, I can’t get through the day too easily. Napping is good for everyone, and even more so for me. There are times I don’t get much sleep at night because of pain, so naps are a must.

9. I make sure to get into bed early and try to get good sleep. I’ve seen a very obvious relationship between my pain level and sleep so I don’t mess with it. It affects my next day too much.

10. I keep up with all my doctor’s appointments and check-ups if any. This can take up a lot of time considering the travel time and that once I’m back, I’m too tired for anything else. I also need to make sure I’ve got enough medication and arrange for more if needed.

So yes, this is what it is. This is really what I need right now. Nothing else is or CAN be more important for me at the moment. Things can change later, but for now, this is it. I’m learning that when my body is kind to me, I feel happier, and the only way this really happens is if I am kind to my body. After all, it’s the only place I have to live.

I might just be starting to set my priorities right.