Last Sunday. 

I’m usually very careful when it comes to calculating my medicines and making sure I always have what I need etc but I guess things do go wrong at times and you forget. I’ve had a lot of other things on my head lately so I understand and choose not to be harsh on myself for forgetting. When I woke up on Sunday and realized I’ve run out of my meds, I freaked out a bit but I thought it would be a good time to gauge my dependency on these tablets.

I was secretly hoping I’d be able to survive and feel good about it – in the past, I’ve had pretty serious withdrawal symptoms (I was told I’m even more sensitive to these than most others) to these tablets so being able to get through just a day meant a lot to me. These tablets are supposed to be slowly weaned off and not stopped abruptly. It seems it needs to be in the bloodstream constantly in order for it to do the work and help with the pain. I was rather hopeful about managing on that one day. It’s just one day. I thought hey, I know my body better. I’ve got other alternative therapy options. I can get through this. I’m sure I’ll be fine As you can probably guess, no. I wasn’t.

My health practically deteriorated through day and within two hours, I couldn’t function anymore. Pain went out of control, I had a short burst of palpitations and breathlessness, my heart started feeling heavy, my lower body refused to coordinate with me and I spent the whole day in bed.

That’s when I realized, no matter how much I do my part of working towards being independent, empowering myself as a patient etc, there will be times I need help. I’ve had a hard time becoming okay with needing help but I’m learning that asking for help doesn’t make you weak. I’m thankful I had a friend around to help me through the day because honestly, I’m not quite sure how I’d have survived otherwise. It also, obviously, proved a point – I’m not ready to live without medications yet.

Again, needing medication doesn’t make one feel great at all but coming to terms with the fact that maybe it’ll help you function and enjoy life at least a bit and work on your dreams is a decent perspective to adopt. Of course, medication is expensive as hell but without it, your place is only your bed. Dealing with so much pain  and managing the  stress associated with the  finances  is a very ugly aspect of chronic and rare illness. Not everyone gets it and not everyone will. The guilt that follows just because you need your medicines is absolutely unnecessary. It is something to work on I think – to realize you didn’t ask for this. It didn’t happen to you because life hates you. can My aim is to keep creating stability in my life so that one day, I’m able to live on a lower dosage – that’ll be epic. Until then, I have to come to terms with what is.

…. Here’s the good part, I have managed to reduce the other medicine by 1 pill. Instead of three a day, I’m now taking two – and trust me, I couldn’t have imagined lowering it back then. But I have now. And it makes me feel great. It’s extremely validating to the choices I’ve made over the last one year. They’ve been tough, mentally and emotionally and physically,of course. So to see an improvement, to FEEL some amount of overall balance and strength is an achievement. I couldn’t have asked 2015 to be any better. There’s still lots to work on, but I don’t expect learning to ever stop.

Thank you, 2015! You’ve really been amazingly kind. Thanks for all the things that fell in place and fell apart. All was meant to be for all of it is helping me move forward. Thank you for all those who believed when I said I know the best for me and thank you to those who thought they knew better – either ways, I’ve learnt a lot and I’m doing my best to figure everything out step by step. It’s happening at a rate of a body not meant for everyone to understand.


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