If life has taught me anything, and more specifically Hydrocephalus, it’s that you simply cannot give up. You can get tired of the fight, yes (repeatedly!). You can take a break, for however long you choose. Ok, realistically…for as long as Hydrocephalus gives you a pass…but I think you get the idea. You can even use the days, where your body isn’t under attack, to regroup and strategise, clear your head and try to see a new way forward. Whether that way is the right way or not, it really doesn’t matter.
The fact is, you’re NOT giving up, on YOU.
When I wrote this post, it felt like that’s what I was doing, which left me feeling helpless, sad and (for lack of a better word) shit! It affected my whole demeanour and total outlook on life. I get that way, each time I have one of those deflating moments (of which there have been one too many) with this condition, and the uphill battle just to be heard or taken seriously.
But in the words of my son, a much needed nudge for most things these days, to get me going: “Mum, you do…YOU!” J.E.D
I’ve since made a few changes and found a new fight in me to keep going, and forge ahead…I have to. What choice is there really? (I’ll keep asking this rhetorical question).
We endure so much when it comes to this condition…
It’s been a busy 2 weeks, the details are a bit jumbled at the moment, but I’ll try to keep it straight:
Hopeful yet again
- Asked my GP to do a referral to “Dr O” with an update on other appointments below – appointment pending.
Gastroenterologist consult
- My abdominal pain is still an anomaly. I have a referral for a second opinion and appointment scheduled at the end of March. The question and statement of the day; “Is your Neurosurgeon sure there isn’t any pressure or brain activity which could be causing your symptoms? We have medical studies which prove brain/gut connection”. My response; “Your guess is as good as mine but he’s adamant so I’m not forcing the issue”.
Alternative treatment
- I went to my chiropractor and had my spine thoroughly cracked and adjusted like only a man in his position can do. Believe me, this decision was not taken lightly. This man could break me if he wanted to, literally! The sheer size of him alone and not to mention this fascinating fact about him. Nonetheless, I love him to bits! But, the pain persists. Desperate times, calls for desperate measures…His parting words when I told him about my gastroenterologist appointment; “Well, yes of course it’s all connected. Your spine and gut issues all lead back to what’s going on in here (placing his hand gently on my head). Why has no one explained this to you before?” And some other terminology I didn’t understand.
- I started doing Yoga. Thanks to YouTube, I can do it right in the comfort of my own home, 10 minutes during my lunch break or before work. It’s just about the only form of exercise I do, other than walking my dog Jesse (No judgement!). I still haven’t mastered downward dog, nor do I intend to as I watch enviously at the ease with which Jesse does it, greeting me every morning as I get out of bed. Tail wagging and “smiling” – the joy of my life right now!
I still have headaches, nausea and dizziness from time to time, including the momentary spinning feeling. Also, my sleeping pattern is completely out of whack, waking up at 2 and 3am every night! I’ve resorted to sleeping pills for this, only when I need to. Some days, I just push through after waking up at 3am without a break and crash at the end, hoping it’ll tire me out enough so I don’t wake up early hours of the next morning…Zombified by the end of the week!
Giving in
- I finally succumbed and started taking the Topiramate, medication I had prescribed in August last year. This has been a hard pill to swallow (not literally). It’s made me feel physically unwell, loopy, unable to think clearly, dizzy, doing and saying things out of context and character. I’m staying away from people as best I can, just in case I do or say something I shouldn’t. I just don’t trust myself and now only take them at night instead of the prescribed twice a day.
- I figured, if I don’t at least give the medication the benefit of the doubt, these doctors will always have an upper hand.
- And, with everything else going on in my life right now (a post for another lifetime), I’m having an “Ah F* it moment!“
Living with a condition like Hydrocephalus requires two things from you (for the most part), whether you like it or not. Endurance of what comes your way and resourcefulness to bounce back from whatever shite you have to face. And, before you convince yourself that you don’t have it in you, reach out and let’s have a chat about it, I’ll enlighten you!
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