I couldn’t think of a cute acronym for FINE.
It’s been a while and the 1 year anniversary of my intense love affair with the NHS; Our monthly trysts where we entangle ourselves & test my boundaries + fortnightly quickies where a quick sampling of my blood is all that is needed. This is my new life with my husband.
I haven’t written in a while because I don’t know if going on about my ‘husband’ is good reading and it’s not like I need to share my thoughts with myself. But I will say I had a great visit with KB in July and I think she was behaving herself cause she knows I can’t get too stressed out. And I definitely wasn’t expecting that after 2 weeks of us in my 1bed flat that we would both be standing and sad to leave each other.
Ever since I saw this ⬇️ that is so true of my life, it’s been on my head all the time. And thus, I’m writing to get it out.
What do I mean when I say “I’m fine”? I’ve never considered this before and I sure as shit know it’s not the same now as whatever I meant when stated more than a year ago. No one has the same, better, or more important definition – I know that – and I’m not saying I’m super special [though KB will definitely say I am and she doesn’t necessarily mean in the positive, I am her ‘special’ child 😘]. Now when someone asks me how I am and I reply with a smooth “I’m fine!” and the best-created smile I could muster, it holds more innuendo and weight than when a woman responds to her man with a “Fine.”
Here is my biggest confession since embarking on this lifestyle with my new ‘husband’ sometimes I wish that I won one of the other 2 possibles I was given during my diagnostic month. Who wishes for lung cancer or lymphoma and not Sarcoidosis?! Me that’s who – cause it’s the more direct clearer path with results that have some kind of logic. With Sarcoidosis, I feel like I’m in perpetual limbo. Some days my meds work and keep shit under control and other times the shit just hits the fan and I wake up to dealing with a shitty day, chock full of wet meteoric internal shitty feeling shit that just flies everywhere and I have to pretend like it ain’t no thing but a chicken wing, to the rest of world.
At least with lung cancer or lymphoma, it’s a clear path
- Handle that shit and blitz it with chemo and or radiation
- Get your results.
- If that didn’t work and you need new lungs, get on the transplant list and get drinks.
Either way at least there is a plan and the wait and see is either good or no bueno.
Literally, @ this week’s monthly, Birring [one of my consultant team] said so by the way, “you know the best you can hope for is that it stays this way with minimal scarring otherwise you may need a lung transplant but we won’t know which way it’s going to go until it decides.” argh! sssoo fucking frustrating 🤬I wish this was one of those things that I can just grab by the balls and handle, but alas my body is telling me ‘Me too’ and it’s their turn to run things.
The frustration and annoyance – I can spar and do intervals for 1/2 hour straight but try to walk up an escalator to exit the tube or trot lightly for a bus and I’m done for – wheezing like a fat and oozing non-mobile non-human, that fat alien from all of those alien movies, pick one it’s in there.
But – I’m fine.
I’m fine because we all know when someone asks you how you are, they rarely actually care to know about your reality and yes we all have issues and no one’s life is perfect. I miss when every day was just the expected ups & downs and did not have a consistent thing that I have to consider and make room for. That is the exact reason why I’m not in a long-term relationship and yet I still have to compromise and someone is fucking with me and thought it would be super funny to make me compromise with myself! Not. Cool.
You hear those stories of people who get a health ‘wake up call’ and decide to turn their life around and make miracle recoveries blah blah blah. I call bullshit.
If I can get out of my bed without taking 1/2 hour to convince my body to get moving, and I don’t spend every moment feeling exhausted then, I did damn good today!
If I can get through the day without having to take a beat to manage simple breathing [the things you take for granted] then, I did damn good today!
If I can stand up to cook and therefore eat something healthy then, I did damn good today!
This fucking catch 20 that I live in every day. In order to manage my ‘husband’ I have to lead a healthy life, but with the minimal energy I have, I can’t breathe when I exert too much of it and cooking is tiring so it’s difficult to eat as I should and the much-needed weight loss doesn’t happen which I can thank my daily cocktail of steroids that I have to take otherwise my ability to breathe is minimised. I can go to boxing and do intervals on my bike for 30 minutes, even though it means that I’m out of commission for the rest of the day, but I don’t have the energy to cook the food I need to compliment it, I may just have to start living on smoothies but what kind of life is that.
So I’m fat and uncomfortably so and dreading putting on a bathing suit when I head home in December and heading to the island of adults who have no fucking consideration and will comment on the obvious things that clearly aren’t the things you are proud of but expect you to smile sweetly and accept their plebian comment.
All this to say…
I’m Fine BUT
The body that I spent my whole life training to do exactly what I wanted it to has betrayed me viciously waking up is a task and I’m going to tell you it’s not because that’s what makes you feel ok and if I don’t pretend either then my exhaustion will get the better of me and then what kind of Bartels woman would I be.
but yeah I’m FINE.
Ending on a good note: It’s not all been doom and gloom, I do make the best of the times when I have energy. I went on a few dates with a couple 20somethings – I mean young 20’s like not even mid 20’s yet 👶- even had a couple months of sex with one of them. But they do have short life span, at least for me.
Older women are definitely all the rage even those who don’t have their sexy body anymore. 😂
Silver lining = At least I know that if I lose more than the 10% of my lungs that I regained and my flares get more dramatic, I could at least get sex without commitment and no arguments – and only need to use my thumb to make it happen.
Walk good.
xo.
