Happy New Limbo
I’d like to preface this with the information that in the last week-and-a-bit, I’ve only been physically able to leave the house once (for 5 minutes, in the car), and last week I had to pack a week’s worth of work into three days due to holiday closures, so I’m not feeling exactly fantastic right now and this may be influencing the general tone of my writing today.
Having M.E. can be an isolating experience in the strangest of ways. Apart from the obvious – not being able to leave the house very often, any and all energy generally being used for part-time work so leaving very little for spending time with people you love, being kept awake on your own at stupid o’clock at night by vicious amounts of pain – there are also certain unexpected things that make me feel a little like I’m living alongside the real world but not really in it.
This time of year is when everyone is making resolutions, talking about what they’re planning to do over the next twelve months (or more like 3 months, depending on your level of willpower)…fitness goals, travel plans, changes, improvements and adventures. Although I’ve never really felt connected to this as a fresh-start time (even before I was ill) because Samhuinn has always felt like my time of renewal, I still enjoy getting caught up in waves of enthusiasm as much as the next person.
I want to be one of those people with a new gym membership or a shiny fresh pair of running shoes to pound the streets with. I’d settle for an old pair of walking shoes and the ability to walk for more than a couple of minutes at a time, but since I’m dreaming, I’ll stick with the whole running idea. I want to be one of those people setting goals to advance along the career path they chose, rather than hoping I can continue to barely cope with the only job that’s flexible enough for me to do at all, or at least be able to work extra hours to save up for something special rather than barely getting by.
I desperately miss being able to set goals for myself that go beyond attempting to better learn to cope with a minimal to moderate amount of activity without completely falling apart. I miss choosing challenges instead of a pale imitation of life actually being the challenge, with no real reward apart from just about managing to get through it on a daily basis (and sometimes not even getting that far).
It’s kind of hard to talk about this stuff cause I’m fully aware that I sound like a petulant child and I don’t believe that anyone needs to deal with hearing this face to face where they can’t roll their eyes and stop reading. It sounds ungrateful and pathetic. I know it does. I feel ungrateful and pathetic even writing it down. But I think everyone is entitled to a time when they can quietly, and in a private space, take a break from counting their blessings and just feel sad for a little bit if that’s what they need to do.
On the occasion that I vent like this, it’s not something I generally share because I don’t like to be that whiny sick person and I also have very little patience for well-meaning platitudes (I’d like to hammer a rusty nail into the eyeball of everyone who has ever said “It could be worse” to someone who was feeling down due to the effects of an incurable illness), but I’m pretty sure I’m not the only sick person who has ever felt this way. So I’m writing about it here in the hope that maybe someone else might run into it when they’re feeling down and be able to relate, and maybe, for just a moment, feel a little bit less alongside the real world and a little bit more like part of it.
Posted on December 31, 2012, in Daily life, M.E., Philosophy and tagged chronic illness, health, living with M.E., M.E., ME/CFS, new year, resolutions. Bookmark the permalink. 5 Comments.
You don’t sound like a petulant child at all. I think that we put on the brave face too much sometimes. It’s all good and well that there’s always someone worse off and looking at the bright side most of the time but it doesn’t make what you’re experiencing and feeling any less real or significant. I’m with you – I’d like to put the people who say “it could be worse” in my shoes for a day. Sure it could be worse but it could be a lot better too.
Reva, thank you so much for your comment. It’s lovely to be reminded that there are people out there who empathise during the crappy times
There are lots of us who feel the way you do. I get comments from doctors who are amazed at the level of function I have because now I’m obviously sick on paper (very sick – near complete adrenal failure). My husband thinks that it doesn’t bother me because I put on that brave face and don’t complain (I wait till he goes to bed and sob hysterically for a few hours). I’ve learned it helps to make at least a commentary to my husband – “today I’m in blinding pain”, “I’m burning up”, etc. I’m still embarrassed that I broke down in my doctor’s office more than once.
There’s nothing wrong with breaking down in the doctor’s office (I tell myself). If you’re anything like me, by the time you actually decide to go to the doctor, you’re having serious problems, in which case it’s totally understandable to fall apart as soon as someone focuses completely on you and show genuine concern. I only see my doctor when things are really bad and she probably thinks I’m completely mentally unstable. I kind of want to book an appointment for some day when I’m feeling alright just so I can go in and say “Hi, most of the time I cope really well and don’t cry and stuff!”.
I actually see my doctor all the time. He felt so bad for me that when he moved back near his family, he started to have appointments via Skype and he sees me for free every week. He knows I am stable – he started working with me right before I completely fell apart (I had been sick with other conditions, including celiac disease and Hashimoto’s disease for many years before this). I’m sure not a lot of doctors get to see an acute onset case happen right in front of them. I know he’s learned a lot from me, but I wish he hadn’t seen me so vulnerable, you know?