Just a mini reminder to stay true to your own journey and pace yourself. Time is never in our control but how we use time is.
March was a busy month and I’ve been feeling more exhausted than normal (I know, I know, for those without chronic illness, this must hardly make any sense). The good thing is that whatever was planned for March is all done and that’s one big step in the right direction. However, before I could even allow myself to fully rest, there’s stuff lined up for April which I want to tend to. Half of me is excited and the other half just wants to hibernate because you can never get enough rest when your body is constantly using up a lot more energy.
It feels like there’s hardly any time to recuperate from March! The workaholic, Ms. Productive in me wants to take charge and make things right and “fix” everything and never stop (this is the older version of me who thought she had it all figured out because at one point she did and guess what, I’ve grown to listen to her less and listen to my body more) because time is running out or something. The truth is, it always feels this way unless I take the initiative to really create space and find time for selfcare – to think less in terms of productivity and more in terms of peace, love and what makes me smile from within.
It’s funny how we think we have control over time when all we have control over is how we respond to it. Time continues to fly and do its thing and either we learn to work with it and use it in a way that aligns with our true selves or we let it freak us out and allow it to paralyze us further.
Good news – There is no new or major injury. I’m still maintaining my count at 9 affected joints (major) and my spine does not show any significant injury caused by me going out for dinner on December 31, 2016.
Not-so-good news – My spine has been degenerating over the years and there’s not much that can be done about it. I’ve got 2 disc protrusions, reduction in intervertebral disc height, disc desiccation, osteophytic bone ridging, mild scoliosis, mild foraminal steniosis, degenerative hypertrophic arthosis of facet joints, grade 1 anterolisthesis, mild nerve impingement which is worse on the left and correlates with all the symptoms I experience.
Conclusion 1 – None of the above can be considered “normal” for a 26 year old. While none of it calls for any urgent medical attention, it does call for personal attention and understanding. It also isn’t a surprise because EDS is a degenerative disorder so your body will inevitably tend to degenerate faster than the rest. The idea is to work on preserving, maintaining or trying to slow down the degeneration and avoiding other injuries.
Conclusion 2 – From my first spine MRI in June 2012 to the second in July 2015, my spine showed a number of new things to take note of. The degree of degeneration from 21 years of age to 25 was absolutely abnormal. However, July 2015 to February 2017, while there has been an increase in nerve impingement, the other main points of concern remain the same and of the same degree. This in itself is something to feel good about and I can’t help but correlate it to how my journey has been from 2009-2012-2015-2017. I can’t help but to believe that the choices I’ve made, no matter how painful, have been in the right direction. It’s extremely validating and I’d understand if no body understands. Most of it required a great deal of consistent internal work + faith in the future + action in the present + open-mindedness to try things which seemed right, all from a place of acceptance.
When you’re dealing with a connective tissue disorder, meaning that your body produces faulty collagen resulting in weaker connective tissues, it is important to note that every little issue, minor structural or musculoskeletal change and degeneration can add up and translate into immense pain and inflammation. The same symptoms might look and “feel” very different in a healthy body, resulting in a vastly different experience. Unfortunately, not all doctors are aware of how every patient experiences a disease differently as it may not necessarily fit their knowledge from medical books. Hence, I think it becomes extremely necessary to track your personal progress, the rate at which things are changing, and the degree to which they’ve changed as part of your personal illness/disease management programme.
Moving forward, I’ve got two options:
1. Go to a spine specialist and get injections in my back to help break the pain cycle. As much as these tend to help others, people with connective disorders may not respond too well to them. Coming from personal experience, I can say they did nothing for me and I don’t feel a pull towards trying them again. In fact, apart from other symptoms, the fact that my body didn’t respond “as expected” to some injections + some minimally invasive procedures was what pointed us towards the direction of my diagnosis. I also know that I’m quite sensitive to certain procedures requiring contrast or sedation and end up getting random infections.
2. Continue to give my back the time to heal, continue doing what works for me in terms of pain management (physiotherapy, ayurveda therapy, essential oils, medications, meditation, herbal supplements, respect my nap and bedtime etc.), and slowly build it back to where it was a few months back. This means that I introduce a few minutes of walking every day, a bit of hydrotherapy, then a 30 minutes of Pilates session, then a 60 minutes session and finally 120 minutes of Pilates per week as my back starts to respond. From there on, I start to re-introduce and take on more work and other activities.
Of course, I’m going with option two. Even if option two means having no answer as to WHEN exactly things would improve, it makes me feel a little more in control of the choices I make. So while there is a fair amount of uncertainty around it (which isn’t in my control), my experience over the last few years and the progress is definitely considerable enough for me to trust that I am capable of working with my body and building it up again. As I’ve said in my older posts, I don’t enjoy needing help for things I’ve learned to do on my own or even having to take a few steps back in terms of work again. However, if that’s what my back needs right now, I must come to terms with the present. Denial or distraction haven’t done any good for me and I’m not going in that direction anymore.
Lastly, I must say that I am so very grateful for the love, support and guidance I’ve found/ had over the last few years. It’s just been a small group of people working with me, volunteering themselves to help, learning to accept my limitations as I learned to accept them myself, trusting me for knowing my body and needs the best, and, never failing to remind me in some way or the other that there is so much more to life and so much more to me than a life-altering chronic illness.
Love to all,
This is me just four years back (4/9 joints down) – a point in my life I would never want to go back to, even if someone paid me a million dollars for it.
I had received a diagnosis just two months before this photo was taken. My parents’ divorce was at its peak and there was so much uncalled for responsibility around it. My career and life plans were falling apart. My boyfriend of 5 years and I were going through a very painful break-up. I was popping 8 painkillers a day + 6 muscle relaxants + non-addictive sleeping pill and yet finding no relief. I had migraines which drove me mad and there was this annoying, buzzing noise at the back of my brain which just never stopped.
I couldn’t close my eyes or be alone in a room because I feared my body might fail me in some way. I rarely slept and if I did, I got nightmares and I’d wake up drenched in sweat. At times I was afraid I’d never wake up. I had palpitations and sudden fall in blood-pressure a number of times in a day. I would lose balance as I walked. I couldn’t wash my own hair or even dress myself. The creative inside me was no where to be found. My body needed energy and I couldn’t eat. I was hospitalized a few times because I started reacting to some medicines.
I only got weaker.
I was trying to hold onto my life, every bit of it, and the harder I tried, the more defeated I felt. My body was screaming at me and I didn’t listen. People around me wanted things out of me that I simply couldn’t give. I needed myself more than anyone else and I kept putting everyone else before me.
There was nothing familiar left about me or my surrounding. I didn’t trust my body and I didn’t trust anyone else either. The fighter in me could no longer fight. I thought I knew what strength was all about but I clearly didn’t.
I needed to let go.
And after what seemed like eons,
I finally started learning to let go,
to accept what can’t be changed,
and to work with my body.
There is more to learn + create,
but right here today,
It’s all okay.
Over the last eight to ten days, I have been looking and searching and texting and chatting and writing and talking and asking and answering so many things that I think my brain is practically dead out of the excessive energy drainage. Nope, this is not something I am able to handle. Though I’ve gotten better, and certain choices that I made are proving to be right, I don’t think I have an unlimited supply of energy stored inside of me to handle so many things all at once.
It’s been a crazy hunt this time round too, and even with my physical limitation, I have managed to overcome this hunt. It’s a little accomplishment and worth a mini celebration because such factors add to the stability I need, which allows me to then work on things that I want to work on!
ODAAT has been on a pause for about a week. I came back home from a 6 week long family vacation and a new disc injury, ready to settle in and start with things I had planned to work on for ODAAT. Within a few days, I found out that I had to leave again and I was reminded how unpredictable things can get once more! Not everything goes according to plan all the time. I wasn’t expecting this; so when I found that I had to leave, I wished I hadn’t unpacked from my vacation. The amount of energy lost in packing and unpacking just cannot be underestimated. I felt bad that ODAAT had to be on hold again, but my mantra has been One Day At A Time for a longggggg time anyway and I’ll just have to create another ‘flexi-plan’ when I’ve finally settled down in my new place. Looks like it’s time for yet anther directional change. A BIG major directional change. Leaving a place all of a sudden, managing a new disc injury and feeling weak from it, knowing the possibility of your close friend leaving and having no idea if you’d find a place just in time sounded like a bad combination of things to happen all together.
But it all turned out fine.
I looked up places like a mad woman, day in day out, could barely nap, had terrible sleep at night, and the concept of self-love faded off my mind for a bit because I was convinced that finding the right place was more important in this time of my life more than anything else. When you’re doing a lot of internal work, looking after yourself and working towards a future once again, the last thing you want is to be in an environment that doesn’t serve the same purpose for you. I decided that finding THAT one place for me to live in is going to be a true gift of self-love that I can give to myself at this point.
Yes. Uncertainty multiplied by a about a million.
One thing that was particularly different this time too was my fear level. I knew that place was out there for me; I was just a little nervous about the time that I was left with. I did my job to the best of my capacity (fine, I did push my body by a fair amount) and because I have to always think in terms of my body, the time limit just made no sense. Even then, I am happy to have handled this entire situation fairly well. Sometimes looking at the most unexpected events in your life as an opportunity to grow makes so much of a difference. This is an opportunity for me to grow. Thankfully, it’s been progressive, and even though it seems like ONE FAT LEAP FORWARD again, I’m less afraid of falling. I’m very very grateful to have been in this place for the last ten months or so, learning to look after myself, taking baby steps forward and around the house, and having a very understanding flatmate to share this little place with.
The way I found my existing place last year was either a random stroke of luck or something that was meant to be this way. I’d like to think it was both. Back then, I was sure about my decision but I wasn’t sure I’d be able to survive. Finding a place that gave me all the space I needed along with someone I could speak life with, just sitting on the couch on random nights, was a great start to my goal towards becoming more independent.
I now look forward to yet another chapter of my life and as daunting as it can get to do this once again, I am ready. I’ve seen that sometimes you just have to let go of the cliff first to realize the immense strength and power you have residing within you or to notice all the different arms and fluffy, padded cushions just waiting to receive you. Support comes from all over the place if we are willing to open up, share our vulnerabilities and ask for help – neither of which equal to weakness.