Wednesday 1 November 2017

What you don't see

Warning: talk of vomit and self-pity over pain and fatigue follows.

Here's what my weekend looked like:

Pretty exciting weekend away at a theme park, right? Lots of fun, lots of rides - even did the scare mazes, because I probably won't have a chance in the future (subspecies was great, the others ok).

When I set my out of office on Friday, I spotted that I had booked off Wednesday as well as Monday and Tuesday - a whole extra day off to write and have fun in! And you can see I had fun - check out the photos from last night!

Looks great, right?

What you don't see is that the only reason I was still walking by the end of the weekend was that one of my friends had disabled queuing and could queue jump 3 people with him. You don't see that I took loads of photos of The Smiler because I couldn't bear to queue for it, even though I really wanted to ride it, but sitting there waiting for the others had stiffened me so much I had to walk around. You don't see me nearly crying because the others aren't ready to go home but I've been wanting to leave for hours because I'm done. You don't see me waking up on Monday morning, falling out of bed and staggering to the kitchen to feed the cat, with a splitting headache that stayed until Wednesday evening. You don't see me crawling back to bed after feeding the cat, then crawling out again a few hours later to collapse at Husbit's feet, crying with the pain. He cooked me food and watched me pick at it, then went out to do the shopping and some other chores. You don't see me throwing up the food I managed to get down me, nor the dissolvable aspirin I drank after I finished puking the first time. This is something that happens to me when I either don't eat enough or otherwise exhaust myself. I threw up the aspirin so hard it was coming out of my nose.

You don't see me sleeping the rest of Monday.

You don't see me staggering around trying to prepare the flat for estate agent photos Tuesday morning, and making nice talk and helping move stuff around for the photos, while in so much pain I wanted to curl up and cry. You don't see me curling up and crying as soon as he left. You don't see me so fatigued I couldn't even watch TV.

You see me at circus. You don't see me seriously considering not going, but finally deciding I have to to keep the fibromyalgia pain away and hopefully reduce the headache (which you don't see still not responding to painkillers) - and also because I don't want to let anyone down. You don't see me failing at a basic move because I'm too fatigued to pull it off, and needing the trainee instructor to demonstrate it to the class. You don't see me collapse in the bath after, and struggle to get out.

You don't see the frustration when I woke this morning and the headache still pounded and I still couldn't move easily. You don't see me crouched in the kitchen trying to make food, grateful that the gabapentin and circus has kept the fibromyalgia pain at bay and trying to keep from crying with the headache and the exhaustion and the frustration that I'm not writing, like I want to be. You don't see me napping, and being woken from the nap by a noisy gardener so curling up to watch TV and crying at everything because I'm so damn tired, and then the gardener leaving and me trying to nap again, only to be woken again soon after by school kids running and screaming on my driveway. You don't see the internal battle that eventually sees me getting up and dressed and nearly crying again, when me opening the front door is all the catalyst it takes to get the gossiping parents to call their children to heel and go their separate ways.

You don't see the angry letters I'll never send to the school.

You don't see the affection the cat has given me all day. You don't see the relief that follows the kiss Husbit gives me when he gets home. You don't see the look on his face when he realises I'm still in pain.

You don't see the wonderful feeling that spreads as the headache finally lifts and I can write this.

You don't see the fear that friends and work colleagues will take what you do see to mean I'm fine.


  1. Keep doing what you do. In this household we know quite a few of those struggles, and similarly work to conceal them from the outside world.

    1. Thank you. That makes me feel supported and less alone :)

  2. Oh Fern. It's a huge struggle to do some things... But we just get so fed up with missing out all the time.

    But then as you say, the hard part begins when we actually have to go out and do the fun stuff and all we are wishing is we'd rather be at home either in bed or in a very comfortable chair.

    And then of course we know what's going to happen when we do eventually get home and that is either half a week or a week of solid recovery time.

    I hope you're feeling a lot better with Circus. How great that does help you keep some of the fibro pain at bay.

    I can barely move now and even just sitting still, I am in agony again. It just won't clear up and it's now about 10 weeks old, maybe longer.

    I'm afraid I don't have a husband but I do have the most gorgeous and wonderful boyfriend... but he lives on the other side of the world and I don't get to spend as much time as I would like with him because when we do have the opportunity to talk, I'm usually asleep. And that's during the daytime...

    Oh I just wanted to tell you I know about real estate people too. I had house inspection booked in and had to cancel it due to illness so they rescheduled it, and I had the house as good as possible (usually it Sparkles but you know what, I don't care that much if they want to take their pictures... they really can't complain about an extra chair here or there which I need to lean on... I haven't touched the walls and everything else is clean. Anyway, the Day Comes, I'm sitting and waiting, I've left the front door and the screen door unlocked knowing that they're coming anytime now.
    I fell asleep sitting right on the edge of my chair. I fall forward out of said chair onto the floor, but the left leg leg is still up in the chair and the right one is knee down with my leg bent up behind it and a sharp edge on my rubber slipper cutting into my knee.

    I finally managed to get both of my legs on the ground and then I had to get my right leg out from under me. After a second round of intensely high screams, and when I finally got my bearings, I got my phone and called my parents. They came over very quickly and luckily the door was open and they came in and fussed around trying to coax me up, but I explained I really needed an ambulance. I didn't want to hurt my arms more, they already feel like they are broken with the Arthritis...

    So I called the ambulance and whilst I was waiting for it to come, I rang the real estate and explained I'd had an accident and was waiting for an ambulance and didn't know if I would have to go to hospital as I could have hurt myself. I wouldn't know until I was up if I could move all my parts ... lol. The woman from the real estate actually had the nerve to argue with me. So I got a little bit hysterical, which I normally don't do, but I did in this instance and I think I raised my voice quite a bit to her. Luckily I did not swear, but I did yell at her...saying that she was welcome to come down and come to the doorway and see me on the floor with my two parents looking worried standing over me and an ambulance about to arrive if it hadn't arrived by the time she got here. Mum took the phone off me and explained that they were NOT WELCOME to come that day so they made the appointment another 3 weeks later, and that is coming up on Monday... yay what fun.

    It's amazing how we manage to get through a day. We have to break it into... I'm going to stand up now and then it's... I'm going into the bathroom now and then it's... I'm going to wash my hands now and then... I'm going to sit down again and then... I'm going to go to the fridge and get some water and then... I'm going to sit down again. It sounds crazy and it sounds mundane, but that is our lives on the worst days... but I'm afraid for me, that is just my life every single day...

    ***There's more to come Fern
    Can't Fit it all in one go.***

  3. I live alone and I more often than not don't eat in a day until about 3am in the morning but that's the only thing I'll eat again until about 3am the next morning which is not good for me because I'm a diabetic as well.

    I have eaten so little in the past 12 weeks, it maybe longer actually, yeah, longer because I just have so little strength at all in my whole body... just standing up for one minute almost makes my legs collapse under me most days. That makes things so hard when I have to go out and do things with the family and take my mum pretty much everywhere because she doesn't like to drive outside of our small community and, I don't know how we do what we do, but then we really suffer for it later.

    Well, so much for my pep talk... But it does help sometimes to know there are people out there who are in the same boat as you and we're all holding on for our dear lives because, we are more often than not, in the middle of major Stormy Weather with the boat rocking crazily, and trying to throw or shake us out.
    Great analogy?
    I've got hundreds of them.....

    Take care of yourself. I love hearing about your darling cat ��. I can't have any pets....
    Mind you... I'm living in what used to be a local motel with probably a 3/2½ ⭐ rating, which in Australia is pretty ordinary and a little blah, but luckily I got the family sized room and I'm not in the tiny little boxes they call rooms, sorry they actually call them apartments... Oh My Lord .... the real estate is delusional.

    Having said that, it is just the right size for me because I can't live in a house or a unit anymore. I just can't look after that many rooms. This is just one big room plus a small bathroom, so I do my best. I did put in some pretty high shelving as a room divider when a neighbour moved out, so now I actually have managed to make a bedroom which is a bit cut off from the rest of the big room because the bed is looking at my kitchen sink... but kitchen isn't the right word for it either. It's a corner of the room with a sink and tiny cupboard just big enough to have a microwave and a grill press and on the other side of the sink the toaster and a kettle. And a small rack for my washing up of course...

    Anyways I'll end my rant and let you get on with things...

    I hope you'll be able to write more. it is the one thing in life apart from obviously family and friends (well, the friends aren't around that often anymore, maybe twice a year now - and yes.. that hurts me sooo much), but that's another sad story!!!!

    Of course my beautiful boyfriend, who has saved me from the drudgery of not wanting to be a part of this world anymore, to instead now looking forward to every single day now that he is in my life with me:- and I do all I can to escape my horrid pain filled shell.

    When I'm with him, I replace 'me' with a younger and vibrant Avatar who does Anything and Everything and I am now always smiling and laughing in my real world too.
    So, there's irrevertable proof ... that Laughter really is THE BEST MEDICINE...

    As I did mention a moment ago, writing is the one thing that I really want to do in life I actually have the notes pretty much ready for the start of my novel and also the start of my life story because it has been a very wild ride, as I'm sure yours has been, and I'm sorry for that, truly sorry...
    Ok well I'm off. It's half past midnight and in Approximately. 3 hours I'll be having dinner, or is it breakfast, or it might be lunch, I don't t what to call it anymore. Lol. Hahaha hahaha hahaha ahhh...

    Keep taking good care of yourself and do all you can to fight the Fibromyalgia.

    One Day At A Time.


    1. Thanks for taking the time to write so much! I hope your legs are ok from the fall and the next visit goes well.

      I'm very lucky my fibromyalgia is only mild. It's still hugely debilitating, but i can still get most things done most of the time. It definitely helps to have someone else at home who accepts having to do more of the housework (I try to make up for it by doing extra on good days), and having Cat also helps because I have to get up and move sometimes, even if I really don't want to or feel like I can't. As long as I take it slowly, it often helps bring me out of the worst. And even when it doesn't we keep going because that's the only option.

      Cat's currently sat next to me, purring insistantly and periodically headbutting my hand: she's decided it's dinner time. She's over 2 hours early, but she'll keep trying.

      I wanted to write today, and go for a walk. Neither's happened, which frustrates me. But I'm meeting friends for games later, and it's more important to me to be well for that, so I don't mind.

      Circus makes a huge difference to me. Before I learnt it was fibromyalgia, I thought the pain I get was stress-related (I've always been a stress-head), and I noticed it would never be as bad the day after exercising - I thought it was just masked by the ache of used muscles, but I discovered the pain would go away even if I warmed up and cooled down properly so didn't have any pulled muscles. Cardio leaves me badly fatigued, but stress/flex workouts (like yoga and aerial circus) are hugely beneficial - when I have enough energy to get the most out of a session!

      Do you find you have very little appetite, or is it a lack of energy to prepare food? I really struggle to convince myself to eat a lot of the time (the rest of the time I can't stop eating) and I've started wondering if it's a fibro thing.