March 28, 2015 – My Tape Story

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 kneecap was so unstable that the Knee Specialist said one could just “pop” it out of place easily.

He suggested that I try Hyaluronate injection (http://www.medicinenet.com/hyaluronate-injection/article.htm) 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 only 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 (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.

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 try 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.

After Diagnosis : January 2013 – December 2013

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

Neurologist

Things went beyond control. Pain was beyond control. I started reacting to my pain medications 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..

Osteopath

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

In 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 it 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.

Day: March 28, 2015

Part 6 : The Story Of My Diagnosis

Part 5 : The Story Of My Diagnosis