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.
Validation!
“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.
Cindy Hirsch
November 9, 2019 at 5:35 pmThank you once again my “hydrosister” for so eloquently expressing my sentiments, and then some. I use your blogs to send to my family/friends to help better explain what I am going through. Your words are so close to my heart and are almost earth shattering for me, yet I very rarely hear back from others, nor does it open up the dialogue I so desire and need. I guess that what paid therapists and fellow hydro warriors are for! Your blog served as my life line recently as my symptoms had gotten progressively worse, and I went to my Neurosurgeon and said “No one should be forced to live in this amount of chronic pain all of the time”. We decided to “flush” my shunt by turning it all the way off and on and resetting it as I was having definite HIGH pressure symptoms. Within minutes I felt relief. Why didn’t I go sooner? For the same reasons you have written about in the past. Denial, frustration, intermittent symptoms, not trusting my own instincts etc….
What I have learned is that Is that it is My Brain, My Health, My Body and My Choice.
I need to find balance between all of these. Somedays I just don’t have the energy or will to fight, others days I do. My next goal is to continue on the path to be seen at a comprehensive diagnostic center now that my insurance is changing Dec 1 so I can be evaluated by a TEAM that is familiar with an adult with communicating hydrocephalus, with high ICP ( for me), with fairly “normal” size ventricles and no optic nerve swelling. Sounds good on paper but I have severe head pain, dizziness, nausea, phonophobia, photophobia that was all under control for 14 years with a well functioning VP shunt until this year. I have spent the last 12 months suffering both emotionally and physically with multiple diagnostic tests and three brain surgeries with almost no relief or improvement. I can NOT accept that that this is my fate and that I am doomed to a life of chronic headaches.
Skyewaters- you have become such powerful and poignant voice for so many of us. May you please derive strength in this fact. You are a gifted writer and I appreciate the time and effort you give as you express your journey as a hydrowarrior.
All My Love and Admiration-
Skyewaters
November 10, 2019 at 1:19 amCindy, you are too kind. Proof that we are definitely here for each other, even if we haven’t met face to face.
I am glad you found a way to communicate with those around you and, I pray that your new team serve you well.
Thank you for your words and for listening to me as well. 💙
IAN BORROWS
November 9, 2019 at 3:29 pmI can certainly relate to a lot of what you said. We live with this condition day in and day out and often time one of the most difficult parts is unless you other suffer with physical symptoms, nobody around you can tell. They have no idea of the struggle to just some days, co-exist. Your head rings, or your balance is non-existent, this, for me and I am sure others too, is not an isolated event, but is part of everyday life. Then, you go and visit your physician or neurologist, hoping, not for pills or potions, it is not like any of them would work anyway, but for validation. A little compassion to understand what it is that you are feeling and dealing with. At least in its present state, I have been able to reduce the MRI’s and CT’s to once a year for my yearly check, but for a while there, I had so many scans, I believed I would start glowing in the dark!
The regular response I used to get and still get from the doctors was/is “well I see no change”. That was an absolutely frustrating comment as well as I suppose a relief, knowing that things have not seemingly deteriorated. But then, after the comment had sunk in, my usual reaction was “what do you mean nothing has changed?” “Try living a day in my life and then telling me nothing has changed”.
I have often wondered what condition I would need to have to deteriorate to to be, not taken seriously, that for me personally is not an issue, but to have someone, somewhere, state that something is not quite right and we need to look closer at this. Please also understand, I am not either looking or wanting hospital visits or stays and certainly not surgeries, I have used the expression before and it is getting used more frequently these days, especially when frustrated at the comment after the scans, “well, see you next year” . “H*ll, I would p*ss on a spark plug if I thought it would do any good”.
But, there I go again. Leaving the hospital with no answers. No conclusions. No remedies. Just the thought, “well, I wonder how long I will manage to make it before my next “spell or episode? Five minutes? Five hours? Where will I be and what will I be doing when it does happen? Because I know as sure as I am sitting here typing, they will continue to happen. The only thing I do not know in advance is “how many episodes?” and “how strong?”.
I look at and read blogs that people post about Hydrocephalus and try and offer them some help, layman’s advice, some comfort even, to let them know they are not alone. To make sure to keep on at their doctors and not be put off with a shrug of the shoulders and nothing else. You have to be your own advocate. Write it down. Share it, because at the very least, if nothing else, it could just save someone’s sanity and make them feel less alone and helpless.
Skyewaters
November 10, 2019 at 1:15 amAmen! I do feel less alone with comments like yours. I wish I could do more to change our situation, our reality.
Thank you for your words💙
Bethany Bacon
November 9, 2019 at 12:00 amI am literally crying reading this because this is exactly where I’m at right now! Needing desperately to be taken seriously by medical ‘professionals’ (sometimes I wonder if they really are). Yes, I’ve been there too, disconnecting from the world for a while, not wanting to come back but, then by God’s grace and my precious best friend who is truly like a sister to me (I have no biological siblings here; all 14 were miscarried – angel babies) I connect back. As I’ve said before, thank you for your posts. If no one else benefits from them (I know they do though), I do! Blessings to you as you continue on this journey!!
Skyewaters
November 9, 2019 at 8:43 amI’m sorry about your siblings, and empathise with your mother 😔
I have come across a few who have left me wondering the same. Remember, this is a two-way street. Here if you need me💙
Jennifer Lane
November 8, 2019 at 6:42 pmSkye,
Thank you!!! Thank you! Thank you! I can’t say it enough….I feel like you are living my life! Seriously…What can we do to influence the medical professionals that we encounter? A few of the ones that I have met with didn’t even know what hydrocephalus is, let alone understand my symptoms. I am a very persistent, positive person, but this condition is TOUGH. Continue to “hang tough.” You are not alone!
Skyewaters
November 9, 2019 at 8:40 amI most definitely will! When and if I find the answer to that question, I’ll shout it from the rooftops!
Thank for your comment.💙
Philip J. Mastromonico
November 8, 2019 at 3:23 pmThe invisibility of the condition, hydrocephalus, is probably its cruelest aspect.
Skyewaters
November 9, 2019 at 8:38 amI would have to agree with you on that!💙
Pippa
November 8, 2019 at 12:49 pmI can really relate to this! Having so many things you want to ask about, but limited time with your GP/consultant/nurse. With this condition memory is always an issue, but it seems particularly bad when there’s something specific you want to say. With the symptoms being so many and so varied it’s even harder. I find writing things down before going in helps, but it’s not always possible. I also go to appointments with my boyfriend, as he usually remembers what I don’t.
And feeling validated about concerns is so important! Even if it’s from a family member or friend, rather than a medical professional, it really helps to know that someone has heard you!
Thank you for writing this. It helps to know that there are others who really “get it” when we get anxious and upset; feeling heard may not solve our problems, but it does make them a bit easier to cope with. Sending love and empathy from a fellow hydro warrior!
xx
Skyewaters
November 9, 2019 at 8:37 amAbsolutely! You’re right, it does help and your comment is spot on. Thanks for that💙