I am extremely isolated these days, partly because I’ve become more isolated and being in solitude over the past few years, that became a real thing not this fall but the fall before, there was a day that forever stays etched in my mind, and from that day on friendships vanished, others took a noticeable hit.
Maybe people think I wouldn’t notice the change, but I like most with dementia feels things at an unbelievably deep level, our intuition and our senses are very acute.
So I know the day it all changed, and I have learnt to come to be ok with it. The pandemic brought about a whole new level of isolation, lock down happened , I spent the better part of the last nine months being sick, once things opened up again, I still was not comfortable to be out and about, only going for necessities,
I loved having social distanced coffees at the park, that was always a treat and so enjoyed those visits. People bubbles expanded, mine did not, my bubble is less than six, I would be hard pressed to count up to six who are part of my bubble. Am I being overly cautious?
Perhaps I am but after getting sick in March, laying in bed for weeks, and for the next nine months having my body endure what I call intermittent attacks on it, my lungs, my kidneys, my liver, my heart, my skin, it’s been unending, a few good days or even a week here and there but overall nine months of being unwell, spending more time in bed than out, at times not being able to leave my building because the stairs were unmanageable, and on the days I could somedays only managing to walk a half a block, this from me the walker, miles and miles everyday. Fighting huge amounts of inflammation throughout my body, fatigue that makes my fatigue from dementia seem like a cake walk and believe me it is anything but.
Overly cautious?,maybe, but my health can’t take to many more hits, is or was it covid or not? I don’t know if many people will ever have correct answers, testing not done in early days, not accurate enough testing, to many unknowns. I will take part in a trial when it starts here, but even antibody testing is not fool proof, the latest is that it may show you have antibodies to covid, but there is now more than one strain, so antibodies don’t necessarily mean you are safe, and they don’t know if you in fact can’t contract more than once.
So overly cautious maybe to some it would seem that way, but for me I fight hard to stay at the level I am because I live with Dementia (although declines is happening), and i to am aware of that. I am fighting hard to not be swallowed up by my illness, to try to maintain some quality of life for a couple more years, so if I fight that hard to have that living with my dementia why then would I not fight that hard to protect myself from COVID-19.
I know there are many who believe in conspiracy theories, I know there is many who think they aren’t going to follow the rules. I wrestle with understanding it, wearing a mask is a simple thing it’s a very small inconvenient thing, but it’s something we can do if not for ourselves for others, I wear mine because I don’t want to be responsible to get anyone sick, I don’t want anyone to go through my last nine months or worse, and for so many it’s far far worse. My heart breaks for the baby who in the very province I live in was brought into the world by emergency c section, because the young mother was having to be placed on a ventilator, and not even aware that her baby is born and healthy, and the hardship on her spouse and family. I know some people can’t take it serious until it becomes something that effects them or theirs. I know everyone is entitled to their own thoughts and feelings on the matter. I have always thought of others first and that is still true today, and I can respect others thoughts and opinions.
My only hope is that we can all think about our others enough to all do our part, if we all do the things we know we can to take care of ourselves and our families, and yes this means doing things differently, thinking outside the box, getting creative, then we can get through this, but if we don’t if we all act like selfish and entitled spoiled peoples then the collateral damage may be more than you really wanted to pay.
I spend my days with my little dog ( Pheobe), I am so grateful I have her, she is great company and brings me great joy. I spend time cleaning drawers and cupboards, I’ve upholstered some pieces of furniture, I’m going to try to make some cushions, I only watch snippets of news, so that I keep my mental health in check, I socialize via a video calks and zoom and phone chats, with those who can and want to maintain relationships. I stay busy with advocating, working with research groups.
I learnt how to think outside the box while trying to form and build a life while living with my dementia, so maybe I need to be grateful for that, while I watch so many struggle, because they have yet to learn how to focus on what they can still do instead of what they may not be able too during this pandemic, for many the things they can’t do will be for the short term, months perhaps even a year or so, but for many of us we already have had to make those changes but for us they are permanent.
I hope everyone can find a way to stay well, stay safe, and be grateful for all that we still have.
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Chrissy's Journey 