After my last post, I withdrew from the world for a while. My way of coping I guess. In fact, I wasn’t too sure what my next post, if any at all, would be. I truly felt like the wind had been taken out of my sails and I lacked direction. I can’t honestly say I’m any closer but…I am farther away from where I was a week ago, in a more positive way.
Personally, when I go into a consult, I feel (after the fact) like I let myself down. I struggle to convey my symptoms in a clear way, jumping between facts and getting things all muddled up – some things I remember and others (important details) I forget. No wonder they don’t always get what I’m on about. I foolishly expect and assume the person, I’m speaking to, will know exactly what I’m talking about and will undoubtedly fill in any gaps I fail to mention, half reading between the lines – Well they don’t.
FYI – This revelation comes with hindsight, a bit too late.
I’m going to assume this is the case with most of us, feel free to correct me if I’m wrong. When we go into a consult with a medical professional for Hydrocephalus, there’s something we need, something I’ve come to realise. It may not be the case with everyone, but it certainly seems like it is for me. And, it may be different for all of us, with some needing it more than others.
“Recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”.
I’ve had so many consults, ending in the same manner as the one last week, felt the same way after and just keep repeating the cycle. No wonder I’m exhausted!
A few people have crossed my path since last week. Call it divine intervention, call it what you will. In my view, it’s been a necessary part of getting me to where I am now and far away from where I was. I wanted to be rid of Hydro, not talk, worry or even acknowledge its existence in my life. It somehow found its way back though:
- Cindy first used the word validate, I heard but didn’t listen. “I hear you and I am here to validate what you are saying”. She said it more than once…
- The comments left on my last post to which I simply did not have the energy at the time to respond, but will.
- My manager asked me how my appointment went and said he refused to believe me when I told him, “I’m f****d”. I truly believed that I am…left feeling so helpless and lonely! I’m still struggling not to feel this way…
- My GP gave me some advice when I finally decided to go see him for a referral to a Physio on Tuesday, to see if they could address the right-sided pain and numbness, simply dismissed at my consult last week. With him too, I heard him talking but didn’t listen when he said:
“You need to keep pushing. No matter how much it feels like they aren’t listening to you, no matter how tired or frustrated you get. You have a serious condition that requires you to push to be heard. You cannot dismiss your symptoms and, if this doctor won’t listen, then look for someone else. Don’t give up”. I was present in body but nothing else…
- The nurse who noted my medical history, later that same day, when I went to donate some blood at the Red Cross mobile clinic. She asked me: “What’s an ETV! Is that something new or have I just not heard about it before? I only know of a shunt” I explained it wasn’t new, but she just hadn’t heard about it especially since mine was done nearly 10 years ago!
- And then, the Physio I saw on Wednesday, told me about his uncle who was born with Hydro, had a shunt put in and has been fine ever since. His mother has also recently been diagnosed but “the doctors are waiting it out to see how it affects her before deciding to operate”. He expressed his concern, and hers, about losing her vision and wondering if he would develop it too. I listened with empathy as he exerted pressure on some points in my back…
All of these people gave me validation whether they realise it or not, intentional or not.
Hydrocephalus is an invisible condition and that in itself is a major challenge. The least we should get from medical professionals or anyone around us for that matter, is to have what we are saying, taken seriously. To look at the holistic view of all our symptoms combined because sometimes that paints a different picture to looking at an isolated incident or occurrence.
I wonder how they would feel if someone had to ask them to wait until the next time, they’re symptomatic? Over and over again… Being scared of the outcome because quite frankly, you don’t know what that will be…Waiting to see if it will be deemed serious enough and being told you’ll be having brain surgery within a matter of hours – with no time for preparation, mentally speaking of course. For some of us, something like this could present so many other challenges trying to rearrange or put your life on hold.
How would they cope knowing the full extent of the effects on their body? Being told over and over again to go to the Emergency room where they do nothing more than manage your pain and send you home, sometimes forcing you to come back because the symptoms haven’t eased up! Doing the incorrect diagnostic tests and leaving you seriously considering death as a better alternative.
I can appreciate the fact that some of us are more complex than others but at a minimum, validate what’s being put before you and try taking a different approach.
At the very least, it will save someone’s sanity and make them feel less alone and helpless.