Warning: Woe is me post ahead. May contain TMI, pathetic loads of self-pity, a wee bit of incoherent ranting, and sailoresque swearing.
My gastric system is out of control and frankly the last few months have sucked. All the drugs I take are basically doing bugger all and I often wonder why I persist. I look back at this depressing, rambling, vlog I did a month ago and realise nothing has really changed.
It's rather confronting to have the truth displayed up there is full pasty colour (and what's with my weirdarse left eye?). In some ways I am better than when I went into hospital, though I'd be hard pressed to find specifics. And no amount of positive thinking is going to change the facts. I can't even get back into the GI specialist until the end of November so I am stuck in a gross no man's land that has left me pretty much housebound and dependent, since August.
Whilst, the physical symptoms that I currently have are quite repulsive and hard to deal with, it's the way they impact on my day-to-day life that is causing me the biggest heartache. Yes I need to go to the loo a bazillion times a day, that I can sort of deal with, though my butt hole may disagree. But this one issue impacts on my ability to leave the house. I have to be sure I am in close proximity to a loo at all times. When I need to go, I need to go immediately. There is no choice. There is no clench your butt cheeks and will your sphincter to stay closed, it's a mad dash to the closest bathroom with a quick prayer to every deity known to man that you'll make it. I even have an emergency pack in the car, just in case the humiliating and downright disgusting sphincter fail should happen to occur (it hasn't yet, but I will now run around and touch every piece of wood in my house). Yep, I'm living the dream right now.
Then there is the joy of the public loo to contend with. I don't have time to wait for the key to a public bathroom. And more importantly, I don't want to have to use the rancid petri dish that is the public toilet. Particularly as the last few months I have come close to passing out each time I go. Face planting on my own tiles is not great, but doable. Face planting on a melange of strange short and curlies, and mystery 'deposits', in the unisex loo of the local 7/11 is not high on my 'to do' list.
The logistics are only one fun part of the problems associated with increased gastric symptoms. Going so frequently, means weight loss, which in turn, means increased Bob symptoms. I am exhausted. I have spent more days confined to bed in the last few months than I have in the previous year. More days where standing becomes a Mission Impossible. More days where simply showering leads to squishing magic carrots down the shower drain with my big toe, and crawling back to bed.
Some days start relatively okay and I make plans to catch up with friends. Stupid, delusional woman. But my body is currently balanced on a knife edge and one little thing leads to a big ugly fall. That one thing could be doing a load of washing. Daring to sit out in the garden for 10mins. Or even, the simple act of showering. Last week I was really looking forward to seeing my best friend, but an hour before she came over I had to cancel. Of all the friends in my life, she is the one who is never phased by me being sick. My being KOed on the couch would be okay, we'd still chat and laugh, I'd just be horizontal and vague (not unusual). But on that day I knew I couldn't even do that one simple thing. And that's what I hate about this whole illness crappola.
I can deal with the physical symptoms. You get used to managing. To becoming creative (eg cooking whilst seated). It's not pleasant, but it's part of the drill. I look at the scales that class the severity of Bob dependant upon criteria such as heart rate, blood pressure, how long you can stand, and think how inadequate they are. The severity of Bob and other illnesses is related to how much they impact on my life, not whether my bp drops into my toes when I stand.
I am shat off that I can't drive, that I can't just go for a coffee, or even, sad as it is, do the grocery shopping. I am peeved that this illness stops me from catching up with a dear friend. I am crapped off that I can't participate in my family like I want. I want to punch well-meaning people who tell me to "have hope", 'it'll get better", or "you just need a positive attitude". I don't want to be 'brave', or an 'inspiration' or all the other words that get tossed around. Nor do I want the expectations that are attached to such labels. I am neither. Dealing with the hands you are dealt, when you have no choice, isn't 'courageous', it's merely practical. Bare bones, one step in front of the other. Illness is ugly and messy and sometimes you just want to scream. And so I am angry, in ways I can't even articulate, that the small amount of freedom I had prior to August has pretty much evaporated.
Some days, living with Bob is like treading water, maybe if you're lucky a little sculling whilst you float on the surface for a while. Other times it feels like you're drowning under the weight of the emotional, social, and psychological crap that comes along with the diagnosis. I don't want to acknowledge that with no change since August, this may be my new normal. I can't wrap my head around that yet.
So instead I take the oh so mature high road and say to Bob and my gastric system, "Fuck you, and the horse you road in on".
Tomorrow I'll paint on my happy face, fight through my bad attitude, and keep on keeping on. But for today I choose the classic "Pout and Wallow" method of dealing. Oh how proud my old psychologist peers would be.
Nothing says I can't wallow and listen to funky 80s dance hits.
Bob is a thief! Stealing your health and your life with it. And like all really good thieves you never know when they're going to strike. Unfortunately Bob doesn't seem to understand that he's not suppose to stick around after his theiving! You know better than anyone that being angry at this is healthy unfortunately about as healthy as you're going to get at this momment in time. I hope you'll be able to find the joy in your friends and family that you deserve.ReplyDelete
Big hugs your way, from one Bobette to another! It's not so much the constant sickness that gets me down most of the time, it's knowing that dignity is a thing of the past. =/ Hoping things make a good turn for you soon <3ReplyDelete
Dang. I don't know exactly what having knobs on means, but from your description of what you're going through, I don't want any! Although, I always liked those knobs on top of giraffes' heads...ReplyDelete
Anyway, I don't want to get punched in the face, but I do have to say that you have nice eyebrows.
Suck it Bob.
so sorry michelle. this illness isnt for the faint hearted. hoping the gastro dr can do something in november.ReplyDelete
have they found out what causes your POTS? only asking because if the cause is EDS then maybe they could do something about it. might be worth pursing the primary reason. theres an excellent prof over here that deals with gastro patients with EDS. if that is what you have maybe they have a few experts in the field over there.
take care. xxx
Uugghh... I have issues with IBS, but not nearly as bad.ReplyDelete
Still, the anxiety, the cold sweats... sexy times, babe! FFS ;(