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Medicine inventory

These are just my daily medications and supplements. These are things that keep me functioning; help me get out of bed, to say the least.

Then there’s another bunch of medications which are basically for emergency + other symptoms management medicines and I carry them in a pouch all the time.

Every couple of months and especially before I go on a holiday, I go through the inventory, calculate, order and make sure I don’t go days without a certain tablet. EDS is a multisystemic disorder which means there is more than just the joints to take care of and there are also more medicines.

Sometimes, because of a brainfog or something, I miscalculate or under plan and end up with really harsh consequences which are basically like withdrawal symptoms. It’s like my body goes into a shock and reacts with palpitations, low blood pressure, nausea, extra fatigue and what not— just not worth it.

I admit, dealing with EDS often feels like a full-time job or like looking after a very sickly child. It requires you to tend to it with a lot of courage and love, every single day. The more pain you experience, the more love you need to find within yourself. It’s a lot of conscious work, finding that love and befriending your body despite all the reasons you have to hate it.

Stocking up my little pharmacy and handling my prescriptions used to get quite stressful at one point. Today, however, it has become a practice; a part and parcel of life. The thing about EDS is that it is as predictable as it is unpredictable and there’s only so much one can do. All the ifs and buts need to be taken into consideration because quite honestly, you never know what comes next.

Over the years, as I slowly came to terms with the complex nature of this illness and its implications on my lifestyle, I’ve also become more patient in responding to its complexity. If I need to depend on certain medications and supplements to live at my best, then I need to embrace the situation for what it is.

💗

Haircut day

Ending April with a haircut!💇🏼‍♀️ It was over a year since I had a haircut, and once again, my recent left shoulder strain + health issues throughout April made me realise it was high time. With EDS (pain, sublaxation, dislocations, heat intolerance etc.) and SIBO (excessive hairfall etc.), I find it quite challenging to manage long hair so I’m glad I finally got it done. It’s crazy how light my head feels after 7 inches of hair is chopped off! I look forward to much lesser time and effort put into haircare throughout summer.🌞

#butyoudontlooksick

Long story short: This is what a bit of mascara + motivation + medicines & a beautiful lehenga can do. It took me approximately an hour and half to get ready 🐢, my dad drove me to the event and back (this is was too special an event to miss) within an hour, and I have just been resting in bed since. After one week (and one tiring month of health issues one after the other) of fighting some GI issues and contemplating whether to leave my house for a short bit or not, I couldn’t be happier I made it there!🙏🏼✨💗

Update

It seems I’ve caught a stomach bug, no idea where, when and how. It’s not like I have been eating out or eating anything raw.

So the bug, along with my existing SIBO symptoms became a little much for my body to handle, especially since I haven’t been too well anyway given the stress of recent transition. I had to be rushed to the hospital two days back because my fever shot up and I was shivering violently, so much so I could barely speak or hold my phone. It’s 40 degrees here and I was wearing 3 thick layers + wrapped in a thick blanket, had my socks on and yet it wasn’t enough.

They gave me an injection and called for some blood work. Blood work showed that both my red and white blood cell count was abnormally low but for understandable reasons. For now, we just need to observe and see how things go. I’ve been put on two strong antibiotics + other medicines for management of the gut symptoms and fever.

Gosh. April has been INTENSE. I had two wisdom teeth extracted, then a massive allergy attack, followed by a great fall in the bathroom and now a flare of SIBO + a stomach infection. I’m terribly fatigued and disoriented. Fever, nausea and stomach cramps keep me falling in and out of sleep. I’m feeling weak as hell, especially after a couple of palpitation episodes.

Again, if this was a few years back, I’d have been a total wreck; not just physically but mentally + emotionally too. Of course it’s not easy to deal with so much all at once but what I know from the last nine.five years is that it gets easier when you’re on the same team as your body. Extremely thankful for the love and support of my physiotherapist, my friend Rohan, dad and my family’s ex-helper who happened to be around.

While I completely support the idea of living as independently as possible even when we’re chronically ill, I also know that there are and will be times we just need extra help to manage our health and we must learn to ask for it.

#ehlersdanlossyndrome #hypermobility #chronicillness #disgestive #chronicwarrior #spoonie #EDS #spoonielife #multisystemic #illness #chronic #pain #fatigue #sibo #weakness #bloodwork #newplace #hospital #hospitallife

Morning ritual✨

Day four of not leaving home and spending most of my time in bed. I slipped and fell in the bathroom last Sunday. Thankfully, no dislocations or major injuries (I’m guessing) but my body is in a bit of shock. My right side took the most impact, mainly my hip, my right knee, elbow and wrist. As expected, there’s some bruising and inflammation around the impacted areas and there is a deep ache in the surrounding muscles which doesn’t seem to reduce no matter what.

In the last three weeks, I’ve had two wisdom teeth extracted, a terrible allergy attack and then a fall in bathroom. All in all, pain is out the roof, fatigue is at its worst and all that gives me a bit of relief is using ice packs, staying horizontal as much as possible and doing my rituals to remain sane. I’m a strong believer of having personal rituals to remain grounded through the unpredictability of life. I’ve got soooo many things coming up from next week! It’s bloody exciting!

As usual, I’m practising being as present as possible, which means really grounding myself into what is NOW and taking it one hour at a time. I’m giving myself what I call “forceful rest” where I make sure to rest even if I don’t want to. I don’t want to because my mind doesn’t want to. It always wants to do more.

When I go into the “forceful rest” mode, I make sure I listen to the needs of my body and let everything else adjust accordingly. I’ve noticed that for me to recover from unexpected trauma like that, rest and sleep is of utmost importance.

Thank you for reading!

#ehlersdanlossyndrome #hypermobility #rituals #reading #writing #spoonie #rest #recovery #healing #pain #life #unpredictable