That time I went to Geelong

Recently, I did something which I thought impossible. I went away for four nights, for the first time since becoming chronically ill 8 years ago. It was to the closest city: Geelong, 2 hours away, with my mother/carer/also chronically ill buddy. You might be wondering, how the fuck did you do that, Siobhan? I’m as shocked as anyone else! One night I just felt, for the first time well, ever, that I could do it. And by that I mean, do something, get sick, but not get permanently worse (which has been the norm these past 8 years).

An airplane flies over tropical plants.
It might not have been international travel, but it may as well have for the toll it took on my body.

A quick day trip to Port Fairy (25 mins away!) was my test run, then I threw caution to the wind and booked an airbnb in Geelong! I did, in a way, have the time of my life. I went to Westfield (and more importantly, MYER), got foundation matched and a full face done at MAC, caught up with Jen for some op shopping, and saw my grandfather for the first time in years.

 

But, in another sense, it was a horrific week. I felt more sick than I have in a long time, and now that I am home, know that the recovery period will be prolonged and brutal. I have done a lot of thinking since on the nature of living with chronic illness, and the impossibility of reconciling feeling so terrible all the time with having any semblance of a good life.

 

It is hard to say whether I enjoyed myself while away or not. I had fun, I suppose, but not without feeling the excruciating weight of my illness the whole time. When I was not doing an activity I was in bed or the (more comfy) recliner, struggling to breathe, and acutely conscious that I was using up weeks’ worth of energy just existing in this novel environment.

I wrote a post on Instagram recently pondering these sentiments. As Jessica pointed out in her post, as spoonies we just wish to participate in life. But can you participate fully if your illness levels are, “if I was able-bodied, I’d be in an ambulance by now”?*

View this post on Instagram

Hi, Insta pals. As you may or may not know, last week I went to Geelong for my first holiday in the 8 years since I’ve been sick. Though I had a great time in many ways, I’ve since been wondering about the whys and wherefores of living with chronic illness. . I am acutely aware of the privilege of even being able leave the house and sit upright in a car two hours, let alone spend four nights away from home, so here’s a shoutout to my spoonie brothers and sisters who are confined to their own bed right now. But this privilege came with a cost – one I anticipated, but could not fully appreciate until I was in the throes of my illness, lying in our hired unit, struggling to breathe and wondering if this was The End. . Just the very act of being away took such a toll that I almost felt, despite having the most fun I had in years, that I could not then or ever enjoy myself due to the crushing pain, fatigue and pure sickness weighing so heavily on my body. It lingers on now, and shall for many weeks I suspect. . As @jessicahollyabdo wrote, I just want to participate. And I did – but not without the hidden cage that separates me from others, that prevents me from doing even the most basic of tasks without suffering. I’m both happy and sad about my trip, and I’m sure will continue to reflect on it in the weeks to come. But right now, guess I'm just gonna stare pensively into the distance and bitch about being so damn sick. . . #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #pots #dysautonomia #butyoudontlooksick #spoonfighter #sensoryprocessingdisorder #spd #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ruraldisability #anxiety #MEaction #millionsmissing #thisiscfs

A post shared by Siobhan Simper (@siobhansimper) on

 

I see a lot of self-criticism in the chronic illness community about an inability to fully adapt to life with chronic illness, in particular, the pacing required and self-blame to follow if an activity takes more energy than anticipated. This seems unfair. There really is no way to adapt to this life, as it is one without rules or logic.

Perhaps this is why able-bodied people struggle to understand our lives so much. Theirs is not a tank that can run out unexpectedly, be full one day and depleted the next 10, they do not suffer extreme and unexpected consequences for being fool hardy enough to get out of bed and do the grocery shopping.

That is why I was so reluctant to share my plans until they were in action: I dreaded the inevitable remarks about how well I must be. The assumptions that I could do this all along, if I’d just put my mind to it. I have still not told those who I know would use my attempts at normality as evidence that I was Really Faking It All Along.

Check out this thread, y’all.

 

Perhaps I expected too much from myself: it seemed logical to me that if I could travel 2 hours down the road, then I could surely travel to Melbourne, go to an actual event, or visit a city specialist. I now know the cost was so great that going to Geelong once a year seems like a lofty goal, and that is not a quality of life I’m willing to accept.

It was also quite a shock to discover that, for the most part, my 93-year-old grandfather has a better quality of life and yet better access to care than either I or my mother do; a matter on which I am continuing to reflect.

 

All these muddled thoughts are part of my considerations upon how I can live a good life with chronic illness. After the blow of the negative results for what was literally the only phase III trial for ME/CFS, ever, I have come to realise that there is no hope for recovery in the near future. The more medical professionals I consult, the more I realise that I am the most knowledgable about my own condition. Therefore, I have to forge out a life for myself, as best I can.

It is overall a positive outcome, I suppose, to do a thing and crash, but not get worse.** That is what I’ve wanted these past 8 years. But it seems a poisoned chalice. My holiday was meant to be an escape, but there really is no escaping chronic illness. So, like many other spoonies, I bumble along, trying to best balance pleasure and payback.

What is “worth it” differs between every person with a chronic illness, as does what is physically possible. I’m still trying to figure these things out for myself, in the ever-changing, always-confusing, and utterly distressing fog that is living with chronic illness. But some days, it would be really fucking handy to have a manual to tell me what to do!

 

How about you, fellow spoonies? How do you cope with figuring out your limits and abilities? And that feeling of a possibly indefinite, absolutely horrible crash?

 

*This is probably an apt summary of life with chronic illness, really.

**So far. My body’s a tricky bastard most times.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

18 thoughts on “That time I went to Geelong”

  1. Siobhan, you are writing that manual! Sharing your thoughts and life, and educating people like me who love you. It was a joy for Grandpop and me to talk to you at Geelong. It’s true that you know the most about your difficulties so trust in yourself as you forge ahead! Love Donna

    Liked by 1 person

  2. I remember a time when I was 21 and pregnant with baby #2. This was before I even knew I was eventually facing a chronic illness. (my MS/illnesses didn’t fully “present” until age 30 and took 10 years for any Dr to diagnose) I was so incredibly ill during that pregnancy. A friend said to me back then “If you really wanted you would be fine.” WHAT?? This was my introduction to – you look fine to me, get with it.

    Even my oldest children tell stories of how I got “sick” every holidays and ruined them. And I got sick after outings and ruined that we could never go back. And we couldn’t travel because I was “sick”. As if it were planned by me on purpose. Eventually they hoped I’d just die from it all so they could enjoy their lives.

    Yesterday I had a Dr visit with a new Dr. My Dr retired. First thing she says as she enters the room is “hello young lady”. Yeah right, I’m 61 years old, chronically ill- get real. Don’t disrespect that. Then she asks about things- of course her response was- every.damn.thing. was because I am fat. If I would lose weight, things would be much better. Really? As if I hadn’t lost weight 30 different times, always returning to this same weight. And never once feeling “better”.

    I suggested maybe this is my normal body considering my diagnosis’. And her saying its the chicken before the egg question- what came first. (fat causing pcos or pcos causing fat) Great- I know she blames me.

    She was so rude. I cried leaving, I cried when I got home. WTF. Is THIS what Drs are for?
    Yes I’m getting a new Dr ASAP.

    I’m sorry you are suffering. But happy to see you got out a bit. (((HUG)))

    Like

    1. I’m sorry you had such a terrible Dr appt, Eliz. It makes me sad to see you experience such humiliation even after all these years being unwell. I hope your new Dr is more understanding. And thank you!

      Liked by 1 person

    2. I am so sorry you experienced that. I have heard this before, lose weight this will all go away………..ahh………it’s not possible things will change, but i did as told and, nothing changed. MDs who say this have no better suggestion because they can’t think outside the box. You shouldn’t have to take that kind of treatment and I hope your next MD is kind and caring.

      Like

      1. Over the years I’ve lost weight too many times to count. I have every calorie count memorized. I think its time they back off. This gets ridiculous, I feel like saying to that Dr- well lets quit all my health care because I’m too fat. So frustrating. MS doesn’t care what I weigh, and neither does pcos.
        I feel for Drs when they don’t know. I don’t think they are God, but goodness gracious don’t destroy the patient!
        When my daughter was dying from her Neuro disease the Dr offered her/us Valium to give her. He didn’t know what else to do. She was on so many meds I asked the Dr- “Is that for her or me? Because she’s on too many meds already. And Valium might help me deal with my frustrations that there’s nothing we can do!” Needless to say we left with no Valium and never returned. Her regular Dr was more help, it wasn’t that Drs fault but sheesh! ;o)
        (((HUGS)))

        Liked by 1 person

        1. I am so sorry, I know the frustration. When MDs don’t know answers they push pills because they feel they are then doing something. I know with me, finding a doctor that gets it AND has any clue what to do with me has been a long process. Decades……….I wish I could help. Life is hard with chronic illness.

          Like

  3. I love that you got out and made some memories and at the same time I hate that you’re paying for it so dearly. There aren’t words for the unfairness. Currently in a horrible crash so pacing isn’t always my strong suit. I try to, usually I’m okay at it. I don’t wear a heart monitor but I can feel my heart start to beat out of my chest and I know my body is sending out signals to stop. Also any activity that immediately results in feeling like I’m drowning, gasping for air, heavy all over body, is something I have no business ever doing. But it’s hard, it’s really hard to want to experience life but knowing you’re body will torture you for just that. Hugs💙

    Like

    1. Sorry to hear you’re in a crash too. I can relate to those feelings of being desperate for air and weighed down, it’s absolutely horrible. Particularly when you are at rest! As I mentioned in the article I think pacing can only get you so far…sometimes crashes just happen. Sending gentle hugs x

      Liked by 1 person

  4. Thank you for sharing your story. You were so brave to take a trip and I think that is wonderful, I am just sorry it did not go well for you.
    You are so right that every move we make we are judged…………oh, your grocery shopping and you hear………..so, you are all better now? People can be complete idiots.

    Like

Thanks for dropping by! I read and value each and every comment you leave. Constructive criticism is welcome.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.