This says it all.
Tag: Elhersdanlos
Some people grumble that roses have thorns; I am grateful that thorns have roses. ~ Alphonse Karr 🌹
Update
Hi all,
I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant. My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.
This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.
There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.
For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.
On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.
I hope everyone’s doing fine.
In case I’m not around much, Happy June! ❤️
Love,
Md
P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity. If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.
#chronicillness
Compression Socks
When you’re hypermobile, the chances of dislocating your fingers, wrists, elbows and shoulders (…and of course, ankles) are significantly high when you’re trying to put on your compression socks! On an average, it takes me about 20 minutes to have them on and I often break out in a sweat because it takes that much effort. They do help with muscle spasms and cramps so it makes me want to keep trying. Oh and if I’m expecting my lunar cycle and cramping like no ones business, I definitely want to use them. I could even do with a compression suit. Also, I had a little bit of a moment last evening when a mayonnaise jar fell off my hand and I wasn’t in a condition to even imagine cleaning up. I had a back brace on and my knees weren’t doing too well either so I needed to call for help. I did think through if I could do it on my own but it made no sense when I had been bedridden all day with pain taking away all my energy. I’ve noticed one thing: we could be doing a pretty good job with acceptance and dealing with limitations on a greater level but there are times when little things remind you that you’re physically not as abled as the rest and then for a brief moment, you’re just like wtf. Well, that’s especially if you’ve had a rough week. Anyway, that was how yesterday ended for me and today is a new day so we shall see how things go. All I want today is my bed, a cup of hot chocolate (SIBO can’t do) and a Great Dane pup.
This is what chronic illness can look like.
Happy #Rare Disease Day in advance!
Day 35: Lower back MRI update (Latest)
Day 35: Lower back MRI update (Latest)
I got my MRI done last Wednesday and I have a good news and a not-so-good news to share.
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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.
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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.
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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.
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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.
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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.
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Action plan-
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.
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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,
MD
If you can read your own scans and reports, understand the terms and see how they correlate to your symptoms + ask appropriate questions + are aware that a patient’s real-time experience doesn’t always match the descriptions in medical books (one size NEVER fits all), you can be rest assured that chronic illness has changed you for life.
Update on my latest MRI coming up soon. Currently too bloody exhausted to type more.
Love to all and stay well!
Day 26: Bedbound
It seems my lower back is just going to take its time to heal and I’m slowly starting to ease in. Once it starts to show signs of recovery, I’m confident I’d be able to build it up all over again (you fall, you get hurt, you accept, you adjust, you love, you heal, you put yourself together and you keep going) because I’ve done it time and again.
I might need to investigate if there’s any new injury or anything to worry about as this has been a rather severe back flare up in the last few months. Let’s hope there’s nothing new in there. I plan to get it checked in a few days, once I get through a few more sessions of physiotherapy and Ayurveda treatment to see if my back responds. I postponed getting it checked earlier because I’m aware of a couple of factors which could be hindering the recovery process.
I’m done resisting the present, hoping and expecting my back to respond just because I have a time frame in mind. I’m slowly easing in, accepting that despite my plans for January 2017, there was a need for me to slow down. And here I am finally allowing myself to. I can’t be more grateful for the support I have right now which makes it possible for me to give my back a break for the time being. I’ve dealt with a great deal of instability for years altogether and realise the importance of having support/stability AND also being grateful for whatever of it you have.
This is not to say that I can wait for too long to feel more like myself again. I feel like a zombie version of myself right now! Truth being said, nobody enjoys experiencing so much pain or dealing with limitations. I seriously despise being unable to do things I’ve worked so hard to get myself to over the last couple of years. I think it’s always good to pause as long as you don’t quit. The present situation calls for me to rest, to let go more so my back heals and regains its strength again. I know I’ll be back on my feet soon enough.
Love to all,
MD
❤︎
Day 17: Bedbound
In the last 17 days, I’ve had to change and cancel my plans and come to terms with my present reality once again. It’s never easy having to adapt to the ever-changing nature of your chronic illness but you get better at it. It bothers your less (in general) and when it bothers your too much, you learn how to manage your thoughts and emotions around it without beating yourself up each time.
I’ve had to postpone the starting date of my part-time job, stop working on the classes I had plans of teaching, take a break from Pilates and my daily walks, ask for help with groceries and meals, all so that my body gets the rest it deserves, the space it needs to just be.
What I have been doing instead is tending to my back as much as I can and very religiously sticking to my bedtime and nap-time. I’ve been massaging my back with certain oils that help me, using lots of hot packs, doing very light stretches, a bit of infrared therapy, going for physiotherapy, meditating, making small mandalas while in bed, reading up on the treatment-diet that I am on for SIBO, writing, and for most part of it, trying to be more present
As much as I’d like to do more, I can’t do more right now and that’s something I need to be okay with. I’ll do more when I can do more and for now, whatever I’m doing is enough. I’m going to continue giving my back the time it needs to recover. Once it’s better I’ll have to slowly build myself back to where I was before this crazy flare-up (or before I went to India.)
According to my Naturopath, my back could be taking longer to recover due to the SIBO treatment-diet I’m on. It seems that the treatment can induce a very strong detox process (which is needed for the treatment) in your body, which, if too aggressive can cause more inflammation in the existing areas of inflammation. I only hope what she thinks is true because quite honestly, my back is not a happy bunny right now. At all.
I hope things start to look a little more positive soon.
P.S. If you’re wondering what’s on my SIBO friendly “buddha bowl”:
- Boiled Beet root with Olive oil and Lime juice
- Stir-fry Spinach with Salt and Pepper
- Pan fried egg (I usually have it without the yolk)
- Olives
- Roasted Tobasco & Ginger Chicken
- Indian Spiced Zucchini
Day 13: Bedbound
In the last 13 days of being bedridden, I had three alsolutely healthy individuals telling me that I shouldn’t have done something I did on New Year’s Eve. What did I do on New Year’s Eve? I went out for dinner (DINNER) with friends, couldn’t sleep till 4am and woke up in excruciating pain. And did I complain to you? Nope.
These three individuals aren’t even close to me and most definitely don’t know what it is like to be chronically sick for eight years and the consequences it has on one’s life.
I completely, from the bottom of my heart understand that they were probably concerned and perhaps I need to just let it go and I certainly will. However, I choose to share this today because I want to bring across a very important message.
On behalf of all of us, the chronically ill community, whose lives generally revolve around their health, acceptance and gazillion other life-altering decisions, I want to say something:
Every single decision we make is consciously thought through by us. Whether that’s something as minor as choosing to use a fork instead of chopsticks, or something major such as having to leave school or a full-time job, or, to once in a while allow ourselves to do something we normally don’t. One can’t even begin to imagine the lengths we go to weigh out pros and cons etc. Every cause and effect is measured. And even then ,our bodies fail us sometimes. Even after all the thinking and taking necessary precautions, there are times when our bodies have other plans and leave us in utter disbelief of the amount of pain something can cause.
At the end of the day, we are not fortune tellers and as much as we can base some of our future decisions on our past health-related experiences, we cannot deprive ourselves of being human. Most of us are extremely responsible people leading a rather simple life, filled with passion and gratitude despite all our struggles. And, let’s be honest, our health usually doesn’t allow for bad decisions.
The last thing we’d want to hear when we’re dealing with such heightened pain is what we “should” have done or not done or do. When you tell someone that they should do something (or not), you make them feel incapable of making right decisions for themselves. It’s almost as if you believe you know what’s better for them. Trust me, you don’t.
What would help instead is to simply ask how we’re doing and if there’s anyway in which you could help. Thank you.
My Tape Story 