I just realized that I haven’t posted since 2013… And that was about – ick – Jodi Arias? WTH?? I’ve had many ideas and meant to write posts, but the reality is, I got sick in 2013 – like, debilitating sick, and it never went away. So now I’m disabled for-reals, and one of the most annoying and difficult aspects of the illness is cognitive impairment. Usually the most effective way for me to communicate is sort of stream of consciousness style, so that’s probably what you’ll be getting. The cognitive problems are caused by constant dizziness, or at least that’s what the specialist said, and that makes sense. So, no dementia for me, thank goodness, at least not yet! My mom had it and it sucked…not the Alzheimer’s type, luckily, which is only one form of dementia.
But I digress… I do that a lot (more) now, sometimes I have to keep sort of talking around a topic until my brain can find it’s way through the maze and get to the yummy cheese prize, at which time I’ll either make my point or have forgotten what the hell point I wanted to make or how it fit into a theory or opinion, or my favorite – complaint! I’ve realized that I COMPLAIN A LOT. Part of it is the comedy factor, I make myself laugh which is a great coping mechanism (not sure if my audience responds the same though…my cats and dogs aren’t always quite on board with it).
I think the reasons behind all my complaining are multifactorial, but at least one other reason is that I’m pissed off – A LOT. Be nice to your family if you have one – if something happens and you get sick, it’s nearly impossible to navigate “the system” on your own, it’s imperative that you have someone to help you, and they need to know a lot about you and your history, so family is best. Don’t count on government agencies because almost all of the people you’ll talk to will have their heads up their asses and be super lazy, they’re sick of their jobs and/or their bosses and coworkers are sick of theirs, so even if they’d like to help you no one will give them the training and information in order for them to help you.
I’m talking about even giving you a useful phone number. 98% of the people you’ll talk to who are supposedly there to help you are too fucking lazy to actually find out what various agencies, organizations, volunteer groups, etc., provide, so they’ll give you a phone number and you may spend weeks trying to reach someone and get help only to ultimately find that you don’t meet the criteria or they don’t provide any services. That kind of thing. Over and over and over. When you have cognitive impairment as part of your disabling illness, this kind of thing can exacerbate your illness for months, during which time you can’t accomplish anything besides rest and try to recover from the setback. Non-productivity at its worst
Oh, and don’t expect to be able to rely on your friends. Once you’re too sick to be easy to spend time with and don’t have mundane, pointless, simplistic things to spend hours babbling about, and you can’t just go and meet for coffee or lunch without a service dog or extra effort and requirements (all reminders of your illness to your friend, making them feel bad in any number of ways) – well, very soon you won’t be seeing much of that “friend”, and the phone calls will dwindle, and the texts and emails will dry up right about the time your phone calls are no longer returned. Maybe some of them will be returned, months after you called them, because gosh, they’ve been soooo busy! But they keep thinking of you and meaning to call! And they love you! And they’re promising with so much emotion that they’re going to spend more time with you! That’s about the time you’ll stop hearing from then altogether.
It’s not because they don’t care or they don’t still love you, and they really do want to be there for you – but you’re not easy in any way. There are many things that your illness may trigger in them – I’m not saying they’re vapid, uncaring or selfish, there are many reasons it may be too difficult for them to deal with your situation. Often they aren’t even aware of what’s being triggered by your illness, and they don’t understand WHY they’re not in touch with you and just being there for you, because they truly want to be. It’s rough on everyone.
For the rare friend(s) you may be fortunate to have who can and do stick it out with you, they could very well turn out to be your lifeline. It’s not trite like it may sound…it’s not easy to explain, but many moments, many days, many nights, many weeks, many months, perhaps even for many years, they may be the only person you have in your life who you can feel emotionally “safe” to contact, send a text saying ‘hey, how are ya?’. The only person you can call if there is an emergency. The only person who wants to help you, and will help you, and never make you feel an ounce of guilt or anything-negative about it.
They’re not helping you because you’re an awesome person, they’re helping you because THEY are an awesome person, and they genuinely, sincerely, desperately feel for your situation, care about you, and WANT to help you. These rare friends can and will save your life and your sanity, just by being who they are – truly good, kind people. I’m incredibly lucky to have one of these friends, and her husband is the same as she is, and will help me out any time I need it. And they’ve looked me in the eye and told me, with grave tones of seriousness so that it’s impossible for my attention to wander, that I am not alone.
I love them. My cats and dogs love them beyond description even if they may not have seen them for months – my kidz, as I call them, are the happiest and SUPER excited, and shower them with affection… it’s one of the most beautiful things ever, to witness how they respond to these people – it’s true, animals KNOW.