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
My Tape Story 
Hi! Thankyou for all your posts. I found these while looking for information about hms and brain fog … My teenage daughter was diagnosed with hms about 15 months ago. She has recently been falling asleep after short amounts of activity and complaining of brain fog and being unable to think. Her hms has always been associated with no desire to eat, food aversions, reactions and difficulty gaining weight. I recently read pretty much all people with hms/eds have food intolerances as it’s all combined together in the collagen layers … Blood pressure and gut issues go hand in hand. It’s really hard .. And yes, she looks healthy on the outside. But can’t do much except be very careful! I will show her your website, so much of what you say she will love to read as she tries to explain how she feels but no one else can truly understand. We support her as much as we can .
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Hi Sophy,
I am so glad that you found my posts helpful and informative. I’m very sorry to hear about your daughter. EDS/HMS is a rather complex condition and is often described as being “multi-systemic” as it can affect other systems in our bodies. It’s challenging enough to deal with let alone get anyone else to understand.
That’s very right – the underlying factor, which is that our bodies produce ‘faulty’ collagen ends up creating many other issues and related conditions. Unfortunately, there is no cure for it (EDS Type 3/ HMS isn’t a well-defined or well-categorised type) and pain/illness management is the only way to go about it.
It’s very hard and I can absolutely relate. It took me years to finally put together a pain/illness management plan which I try to stick to as far as possible. There isn’t much we can control except learn how to respond to what comes and learn to work around the condition.
Of course, all this is easier said than done. I can only understand how difficult it must be for her, considering that she’s still a teenager. I was in my teens when my symptoms started showing too and I only got a diagnosis when I turned 22.
If it’s going to be helpful to you or her in any way, I am willing to speak with you over Skype or else where. Do let me know if you’d like that.
I wish you all the very best!
Sending love
Manasi
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