I have no doubt there are many of us, who are relied upon by our families, to be the one who holds it all together. I especially know this is highly likely if you weren’t born with Hydrocephalus (though not limited to) but, diagnosed later in life, like me. In my own family unit (myself, my husband and kids), we all have a different view of the person I am now vs pre-diagnosis and brain surgery. Aside from me, none of them are fully aware of the differences. The challenges I face with processing information, retaining it or just how badly I want to not have to do all that I do. Truth be told, it causes me unnecessary anxiety and makes me yearn for a break!
Some days it gets so bad, I literally want to run away.
Or, when I feel myself pushing too hard, I literally wait to physically fall down from exhaustion and, not get up.
But…I’m still standing.
I’ve always been a strong and independent person, something which hasn’t changed despite some other “obvious” (to me) changes. I find it very hard to rely on anyone other than myself…for anything. Something, which I don’t see changing any time soon.
The problem with it all is, without them realising (I assume), I feel an incredible burden to always be as high functioning as I’ve always been. I’m not…I’ve just learnt how to cope…
As an example, I need to be the main breadwinner right now, the one who has it all together, knows what’s happening all the time with every little detail of each member of our family and finances. Keeping track of the new life we’re building with regards to new accounts, usernames, passwords, new schools and all the logistics that goes with starting over. And, not to mention being their go-to person for…just about everything (as mothers do).
All while trying to find my feet, having started a new job!
Where’s the exit please? Keep the refund…
It’s not that they are as much to blame as I am for allowing it in the first place. I could argue that discussing it with them should help but I know it won’t, simply because, I’ve tried. However, I’m not playing the blame game because that never gets anyone anywhere. It just causes unwanted arguments and more frustration than anything else…I just don’t have enough energy for that!
Just so I’m clear, I do get help from my husband and kids but, there are things I’ve always done and am better at, than they are. Unfortunately this is where being diagnosed later in life, once you’ve established yourself, brings a whole other challenge. I have all the info locked up in this head of mine for what it’s worth, believe it or not, it still works! If it’s not in there, I have it stashed away safely where only I can find it…Lord help them the day I can’t.
It’s stressful to say the least. I feel like I keep hitting my head against a brick wall and just can’t seem to move forward, no matter how much water I tread.
I don’t like playing the Hydro card because somehow, it goes against who I am. However, the fact remains, I have this condition, which does bring with it some very real challenges (some which I can’t simply wish away or get past). It’s natural for others to advise “just don’t do it anymore” but, that’s easier said than done.
Hydrocephalus is an invisible illness that just keeps on giving, regardless of whether you’re in physical pain or not. The effects of this condition, goes much deeper than just that. Sometimes I do think it would have been easier if I had a physical view of the havoc thrust my way. A limp, a crutch…anything as an outward sign of my inner challenges, just so that those around me can get it.
If I don’t get to say it anywhere else, I’d like to be able to say it here:
I don’t want to do it anymore…I need a permanent break! Change in “job” description would be nice please…
Life handed me some lemons along the way, which I accept as part of it because, life itself isn’t easy for any of us. But, it added some grapefruit too, the day it added the word Hydrocephalus to my vocabulary. Sometimes I just wish there was enough sugar to sprinkle on, to disguise the taste to a bearable point…
Ever feel this way?