I’ve been wondering about adults living with Hydrocephalus. Specifically about how Hydro affects your relationships… Has it been a deal breaker (as Dr Phil would say)? Has it added stress or strain and has it even managed to break you apart?
I ask because I think about how it affects my own relationship. My husband has stuck it out this long and I don’t foresee him going anywhere but I’m no psychic either…it could happen, right?
Admittedly, I’m not an easy person to live with. I will be the first to say I’m probably one of the moodier people I know. I know my temper can flare at inappropriate times and this is evident by the bad feeling it leaves me with after…when it’s too late. Thankfully for me, I’ve learnt to apologize for my actions and will admit when I am wrong. However, I do feel there’s a lack of empathy for me from the loved ones in my life, specifically from my husband and kids (I don’t think this is intentional though). I attribute this mainly to the fact that I was diagnosed later on in life and because they knew me before that time. They know what I was capable of then. And, I don’t make it any easier when I myself forget that a few things have changed for me. I still see myself as the same person before diagnosis and get frustrated when I come up against a challenge, which I easily performed before. I can’t really say I blame them but I do take cognizance of the fact.
I’m aware of the arguments we’ve had along the way. I’m referring to times where I know my actions or, better yet, inaction was affected by my Hydro. Times like, forgetting where I put the house key and the spare we got cut and the countless spares after that! My memory has probably been the biggest irritant of all and trying to explain it to him has just become tiring. He’s OK with it now…sort of. There have also been times where my mood has been adversely affected because I was on the brink of a Hydro episode. I would become my evil twin…
I want to run away from myself at this time because it’s just not pretty. After which, being fully consumed with pain, I would realize what was happening…
But, I’m left wondering afterwards, when will it be too late or too much? When will I reach the point of pushing him or my kids too far?
Also, there were times when we made plans to go out and I’d cancel (at the last minute) because I was feeling dreadfully unwell. These would normally be plans with family or friends. I have no explanation (or energy) for anyone who sees me OK one minute and a few seconds later in the clutches of pain and agony. I wish at these times a big flashing red light would go off around me, complete with sirens and whistles.
As things are now, I would much rather prefer to be in bed most days and it’s just the best place for me to be. My kids say that I’m always tired and never do anything with them. I just feel like it’s hard enough to try and be part of a functioning society and by the time I get home and finished up what needs to be done, I’d rather just vegetate in my bed. My body feels tired most days and this could be caused by just about anything…not just Hydrocephalus.
I don’t want to have to explain to anyone “Hey, right now I’m feeling OK” and when I don’t “Oh I’m not feeling so good right now“. However, I appreciate the people who show genuine care and concern.
So, coming back to the topic of this post…Has having Hydrocephalus affected your relationships? If so, in what way? Also, do you have some insight into keeping your relationships intact or hindsight view of having gone through a split? OR…Has it had the opposite effect and strengthened your bond?