We all walk a different path despite being diagnosed with the same condition. Some, or all of these emotions, may play a part in your story (in no particular order and, sometimes, it may even be a case of repeating itself). Looking back at my own life with Hydrocephalus, before, I couldn’t think about what I would say to 29-year old me at diagnosis. The reason is simple, I’m not at the end of this journey and therefore, felt like I couldn’t possibly tell myself that everything’s going to be OK. You see, I thought I needed to be out of the water before I could verify that I’ve safely landed ashore.
That’s simply not true…especially, since this is an incurable condition.
Also, the yearning could be anything from wanting the pain to stop, for a cure to be found, an end to the constant brain surgeries, to just catch your breath in-between…or simply to die. Speaking only for my self, being diagnosed with an incurable condition, has led me down paths of exploring life vs death. It’s something I’ve had to do as part of my Hydro journey. I don’t believe there’s anything wrong with any of it.
No person knows fully the extent of the next person’s suffering or how deep the emotions run.
Death has never been something I feared. I suppose I have my late grandmother to thank for that. She exemplified a life of faith and trust in God and always spoke of death as something she welcomed…not in a morbid sort of way. She wasn’t perfect either. No one is. I certainly am not. However, I find myself doing that too, speaking of and welcoming death. I find acceptance of the inevitable that much easier, because of her.
Going into the new year literally in pain and discomfort, not knowing fully what’s the cause of my symptoms or why, has been nothing but disheartening. I find myself in the throws of medical examinations, specialist visits and scrambling for answers…yet again. I’m tired of it. All the repetitive madness! My two weeks of annual leave have just left me more tired and unprepared for the start of work on Monday.
It is what it is…
Speaking with my husband earlier, I asked him if he had given up on me yet and, as expected, he turned the question around on me. “Have you given up on yourself yet? If you have, then why are you still going to see all these doctors and wasting money?”. In the split second that it took for me to answer him, I realised, despite the fact that my answer would be a resounding “YES”, I do it “because I have a responsibility as the main breadwinner to take care of myself, in order to continue to ensure our family survives financially”. It’s not about me, but about my children. Therefore, regardless of the way I feel or the fact that I’ve given up on this life and have made peace with my new norm, I want an answer to all the questions, in hope of returning myself to a reasonably healthy state:
- What is causing my intermittent central vision loss?
Without my vision, I will find it pretty difficult to maintain my current employment and my family will bear the brunt of that. If Hydrocephalus is affecting it, in any way, and my ETV is in need of revision, despite diagnostic tests proving otherwise, I will lose my ability to see…in time. The likelihood of this being the case, is anyone’s guess and I am certainly not ruling anything out. As the Optometrist said to me last night, “This could just be migraine-related but, given your condition, one can never be too careful.“
- What is causing my body to feel as if it is on fire, from my brain to my toes, and causing this unbearable pain and numbness?
If my spinal stenosis is causing it, and my ability to work is affected, my family will bear the brunt of it. My plan of attack in this regard is working my way backwards from when I first consulted with my Neurosurgeon last year. He felt my GP needed to “work harder to determine what’s causing my symptoms“. And so ensued a visit to a Physiotherapist, as my other medical ailments reared their head.
*Anyone with similar symptoms, please do get in touch and let me know if you have experienced any of this and if you have any advice.
- What is causing this severe intermittent abdominal pain?
Failing the trial of medication I’m on, a surgical procedure MIGHT be next on the cards (I certainly hope not).
- My gut and thyroid health are questionable, to say the least, only adding to the confusion of all my symptoms.
All I can do, is take matters into my own hands as far as possible, trying to help the physicians figure it all out:
- Physiotherapy sessions to try and alleviate the pain and see if that brings relief, have not yielded conclusive results.
- Starting a new exercise routine with an Exercise Physiologist, is on the cards next week.
- A Dietitian is helping me take a closer look at my diet, eliminating foods that could be affecting my gut health.
- I have a vision fields test today, in order to be triaged, to see the Neuro Ophthalmologist in 6 months’ time. (Yes, it’s a long wait but he’s THAT busy! Lord grant me patience…). My only hope is that something is picked up at this visit though, I’m not hopeful as I can see perfectly well right now.
- And, on Monday, I have an MRI of my brain and cervical spine to compare to previous studies and determine if there have been any changes.
More than this, I cannot do.
For the sake of where I’m at on my Hydro journey, I do have this to say to my 29-year old self:
You are doing a good job of advocating for yourself. Your fight is honourable and inspires others to do the same. When you question your purpose, just look at Skyewaters and keep at it, you’re going to be OK. In fact, you’re going to be more than that! Life could be so much worse than what it is for you but, there’s no need to invoke any of that nastiness on yourself. You have risen above all the challenges presented to you and, will continue to do so. Though you will have some uphill battles ahead, this too, you shall overcome. God has you in the palm of His hand and simply won’t let go.
Just hold on!