D I G I T A L D E T O X – With my classes and workshops starting again this year, I haven’t had a chance to go on my usual monthly digital detox for a while now. However, it looks like the time has come! I’m in a desperate need to disconnect from the world for a while and do things that help me build up on my energy levels. My health hasn’t been all that great lately and all of a sudden I have a tonne of other things to juggle and deal with. I’m predicting next few months will be rather fast-paced for me, which means I need to make sure I give myself more time and care so that my body doesn’t experience some kind of a shock. So there’s my brain trying to think of the quickest and most effective way to get things done, bringing out the old workaholic and control-freak in me and here’s my body doing its thing, being wise and reminding me to go slow. When I work at the speed of my mind, my body suffers for sure and life gets really R E A L L Y hard. When I allow my body lead and let my mind do the supporting role, things seem to work a little more in harmony which in turn keeps my spirit going. Up until today, each time life got too fast-paced (which gives me a bit of a high), learning to mindfully slow down and squeezing out some time for myself is what helped me tremendously. Mindlessly going with the flow has never worked in my case.
I’ll be right back!
Sending everyone lots of love and spoons,
Manasi

It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.

Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.

My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.

What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.

Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷

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.

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. 

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.

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

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.

New Planner Love

You know it’s New Year’s soon when you get your next planner! I am so excited to start using it! Just look at how gorgeous this flowery-pink planner is. Absolutely love love love everything about it.

It’s my third kikki.k planner in a row (2015,2016,2017) and I’m still not bored of it. Unlike other times where buying a new planner is more of a self-ritual for me, this planner came as a gift from my best-friend.

I think I’m ready for 2017.

P.S. I know my thumb looks rather creepy in the second pic. Let’s just focus on the sheer beauty of these planners instead, shall we? :)

Down.

 One of those days when all you can do is sleep with oils and hot packs.

My sleep was terrible last night. In fact, I haven’t been sleeping too well and I assume it’s because I’m still getting used to my new place. I usually need some extra time to settle in and get used to a new space. We all do I suppose.
It took me a while to fall asleep last night and I got up far too early. 5:20am? I woke up feeling extremely cold; to a point that I was shivering and needed to wear a sweatshirt, put on my socks, switch off the AC and get myself two hot packs to hold on to. Getting out of bed was a challenge because I hadn’t slept enough and my back as tight and in pain. Nope, I didn’t get a dream and nor did I wake up feeling anything. I just woke up feeling abnormally cold.

No, I wasn’t running a fever either. I checked. My temperature was kind on the lower side instead. I don’t usually get up because it’s too cold in my room. I’d get up if it gets too hot sometimes. The AC needs servicing, so you can imagine, it really wasn’t that cold to begin with. I decided to push myself out of bed, even if I was freezing to death, and start with my day. I had to because my brain was active (tired, but active) and my body didn’t want to cooperate. I know it needed rest but staying in bed wasn’t helping.

Within an hour or so, I got back in bed again. There was no way I could’ve continued with the day. There is no way I’m going to be able to sit with my laptop or get anything done, even though my brain could handle it. It doesn’t even seem like a work-from-bed day. Today, my body needs extra care and rest and that’s what it has to get.

That’s just how it is – every day looks different, yet can feel the same.
🌷

April Till Now.

Here’s my list of complaints:

  1. I still haven’t recovered physically from that super fast walk on April 11. My knees and lower back still hurt and I’m not managing to keep up with my daily walk at all. I’ve needed  extra painkillers again.
  2. No Pilates for the past 2 weeks, after managing pretty well through March.
  3. No pool. This sucks.
  4. I’ve been exhausted out of my mind. My brain has had a pattern – process, process, process SHUT DOWN, process SHUT DOWN, SHUT DOWN, process, process SHUT DOWN, process, process, process, process, SHUT DOWN… [for the past 15 days or so]. Tiring.
  5. Why did everything have to happen at the same time! All kinds of emotions at once? Really? Tiring.
  6. I’ve had an icky diet! Sick diet! Eww. Other than lots of mental processing, I ate all kinds of food that I usually don’t eat. No, NO.  That doesn’t mean I follow some sort of a fad diet to not put on weight and NO I don’t starve myself (I’ve come across far too many people in the past who believed that HMS happened to me because I didn’t eat enough!), I eat enough for my body and I can’t live without dark chocolates. I have a sensitive stomach, which I have to look after AND I am experimenting with some anti-inflammatory foods. So when I say I had an icky diet, all I mean is that I didn’t eat like I generally would. I ate too much for my body to handle.  I didn’t feel like cooking at home and it’s not as if I ate “right” outside.
  7. My sleep has been especially messy. I’ve been waking up every hour or so, feeling terribly warm at night and sweating at 18 degrees. I’ve been getting up way too early, even before the birds….
  8. And then spending rest of the day in more pain. Tiring.

And now onto the positive things that came out of this month:

  1. I feel much better that I sorted some things out over April. It was time. Things could have been a lot worse, but I handled them pretty well. I remained true to my needs, trusted my decisions and I did what I’ve been wanting to for sometime now. It’s always challenging to deal with ultra-sensitive topics! I feel so relieved now.
  2. 37bf1c620a0ce6440322baf1dd5b64c8I feel much lighter now; after experiencing some heavy emotions. Good thing  I didn’t distract myself too much from all that!
  3. I got some practice with saying NO.  A couple of incidents took place which made me realize that it has become especially important for me to say a clear NO and mean it.
  4. I was presented with an opportunity to look at my entire journey (like watching a movie about my life), since the day I was born till today, and see for myself that I really have come a long way. A really long way…
  5. While my mind was doing it’s own thing, a part of my heart opened up a bit. I came across new people, new perspectives and new ideas..
  6. I received beautiful compliments for my blog. It was encouraging to hear good things about it from friends and strangers! People want to read more.
  7. My Patient Story was finally published on Global Genes!
  8. I sold one of  my patterns! YES! I work on these patterns whenever I’m able to. I take custom orders depending on how much I can really manage.
  9. I threw away some more old stuff to make space for the new. It turned into a major highlight for this week.
  10. I got a chance to take things at my own pace. Without any sort of rush, without anyone pushing me to “feel better quickly” or to “be okay already”. I got my time to cry if I wanted to, laugh if I felt like, stare at the ceiling, sit and breathe, write, draw, stay in bed through the day with hot packs…..and just give myself the space and freedom to experience whatever I needed to in order for things to slowly fall back into place.  There was a time this wasn’t possible at all and I’m so grateful that it’s possible now.
  11. I think I’m ready to put everything back in place now :)

Conclusion:

Wow, looking at my list of good things.. I don’t think I want to even complain anymore. Just because April brought up some negative stuff and ruined my routine doesn’t actually mean it was THAT bad. Yes, it messed with my feelings and caused my body a lot more pain, but it propelled me forward along with all of that.

Alright April, you haven’t been that mean to me. Thank you.

Happy Weekend!

Still Need More Time And That’s Okay.

 OKAY. de137adfd5d1e012c45110808210e67dI still don’t feel all that well. I still feel mentally drained out.

You know how it is like when you have exams? The actual exam period obviously gets very stressful, but once you’re done with your final paper, you still take a few days to recover from the exhaustion you experienced during and before exams.

I’ve been feeling like that somewhat. The post-exam fatigue.

Except worse.

I stayed up quite a bit last two weeks because my body was in a lot of pain AND because my brain had lots of things to sort out. A few things happened last week that completely zapped my energy away. I mean, dealing with pain in the body is one thing and when coupled with something emotionally or mentally triggering, I’m just left too charged up for anything else. It then takes me about a week after that to really regain all the energy and finally come back to my routine. My body requires EVEN more care and patience when I feel this way. But it’s during these times that my attention also shifts to my mind and heart. I tend to give more importance to how I think, how I feel.. my thoughts and my emotions, and not just the physical pain that I experience51926853745859c2fd95141ee3735e18.

It’s these times when I see what it is like to really be human. Experiencing physical pain makes me feel alive enough I think, but to experience all kinds of emotions and thoughts together with that is a different story altogether. That’s being human, that’s being more alive than ever.  I don’t hide away from these things now. I think it requires some amount of courage to look straight at your thoughts and emotions and to figure them out, one by one, with patience and care. Just like my body needs my time, my mind and heart need my time as well. I’ve taken a while to understand this.

I gave myself this week to recover, to work through things slowly, without any kind of rush. Clearly, I’m not there yet. It’s Thursday already, but I require more rest. So even if I take a few more days to start feeling normal, that’s okay. I’ve been totally off routine this week –  I haven’t been able to go for Pilates, go into the pool as much or even walk like usual. Things are sort or and sort of not going according to my goals for this week. My main goal this week was to recover, which is happening slowly. But everything else.. not really.

It is also during such times that I have to be honest with people around me and tell them I’m not in a state to deal with anything new. If I need to, I make sure to tell people that I’ll catch up with them when I’m better. I simply can’t take in more information from anyone else when I have so much to sort out internally for myself. Since young I’ve had a tendency to listen to other people’s problems and to help them out – but these days I need to put myself before anyone else.

I’ve noticed what hela2454ac9d3e89a7ff709038bb5beeaa0ps me feel better (other than sitting with myself) during such times is talking to complete strangers about something totally unrelated and light, or spending time with people who know that I take my time through things. I have my own way of processing thoughts and emotions, and I don’t appreciate being rushed through this. For a moment I may feel like dancing on “Desi Look” or “Chittiyan Kalaiyan”, and the next moment, I may want to run to my room to calm myself down or cry my heart out. Having this sort of a freedom is so important to me now!

There is a general pattern to how I  function and I’m okay with it – I feel like crap, I let myself feel like crap, I work myself out of the crap and I don’t feel like crap anymore :) So right now I’m some where between working myself out of the crap and not feeling like crap.

I allow myself feel what I need to feel, I look at my thoughts and keep the healthy ones, and then I slowly bring my focus back to present, back to where I am and where I’m headed. Sometimes this takes longer than usual. But so what?

OH. And I eat a lot of dark chocolate.