My week in pictures…

Last week started yuck with a viral bug, got a bit rocky with with hospital nonsense & finished up with a lot of lovely relaxing.

I’ve done a fair bit of lying in bed. Which might have led to a little bit of feeling sorry for myself shopping. Oh & eating bowl after bowl of broccoli soup to appease my damn stomach.

Soup, hospital band, soup, spunk rockstar

New hat

I had a hotel overnighter on Thursday & took advantage of being right in the city centre to get out a little. We saw a movie, spread some #projectpostit wisdom & snapped some pretty sights.

Wagamama lightsPoint a hotel, project postitly h KerrCineworld, ice blastNaked with socksGood things, primark Glasgow

And of course my wee paw monster has been cheering me up with his cuteness.

Bronan Kerr

Do I wear you out?…

I’ve had another really bad week pain wise. It feels like I’m been having a lot of bad weeks recently and I’m tired. So very tired.

Life goes on, though. Nothing stops because I’m in pain. So, I try to keep on going too. It’s exhausting. Pain wears you out. Even before you attempt to do anything, just being in pain is tiring. I’m not sure that many people know that. You start the day fatigued. Every single task you perform from that point takes enormous effort. You’re fighting the pain and the growing exhaustion.

Drs will tell you to rest, but complete rest isn’t feasible for very many people. I can’t rely on or expect other people to take care of my life for me. My house will stay dirty if I don’t clean it, my fridge will stay empty if I don’t fill it, my bills won’t pay themselves, medical treatment doesn’t come to my house, my cat needs fed and my teeth, hair, body won’t clean themselves. Those are just the very basics of life, but they can be overwhelming when every move you make is agony. It’s a no win situation. If I neglect these basics my quality of life is seriously impacted. My stress levels soar & mood plummets. Trying to keep up with daily life saps all my energy. Pain is exhausting & exhaustion lowers your ability to cope with pain. It’s a vicious circle with no obvious escape.

Plus living is more than one’s basic responsibilities. There has to be human contact & stimulation. Unfortunately those can be just as tiring as the daily dirge. I love writing. I love swimming. Both are good for me, body & mind. Doing either involves a string of wearying steps. I have to wear myself down in the hope of benefits that are never guaranteed. I have a wonderful friends & family. Excellent relationships I don’t want to lose or neglect. However, just making myself fit to be in company is sometimes a mammoth task. I don’t even mean appearance wise. My people will accept me with no make up & greasy hair. They can handle the days that I can’t walk very far or do very much. For which I am grateful. What I can’t ask of them is to soak up my ill temper. Pain makes you snappy & negative & frankly unpleasant. No one wants to be around that. Also, no one wants to treat the people they love that way.

What do I do? I monitor myself. I constantly keep a tight grip on that grump. Take a deep breath & swallow it down. Let me tell you, maintaining that front, is exhausting. Also, essential. I don’t want to be a nasty bitch. I want to treat people with respect. Of course I gain from this; my life is immeasurably better for having date nights & sister time & lunch with my bestie & joyous mini people in it. Pain is absolutely not an excuse for being a fuckwit. It’s right that I censor myself into being nice. It’s just that it’s incredibly draining. It is the same catch 22, don’t push myself to do these things and my life would be empty. Do them & I pay the price.

None of this is anyone’s fault. There isn’t really anything anyone can do to change these things. This is just my life. Oh & a lot of other people’s too. I have this idea that maybe if we understand each other’s experience we might understand each other a little better. I think that would probably be a good thing. Further more, I’ve been trying to hold in all my grump & I am very tired.

** Apologies. I know this is not my best writing. I’m really sore & really tired.

You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.

A day in the life…

This morning I was rudely awakened at about 3am. The ill mannered culprit was pain. This time it was intense & centred in my stomach. So, i got up, took my stomach meds, some painkillers & hoped for relief.

Relief was not to come. I lay in the dark for half an hour waiting for the medication to work it’s magic. My body was having none of it, a wave of nausea washed over me & I knew I was going to be sick. I ‘rushed’ to the bathroom where I proceeded to vomit repeatedly. Each violent wretch sent pain shooting down my back. An hour later I’m sweating, dizzy, sore & unable to get off the bathroom floor.

All the throwing up had triggered some hefty heartburn & reflux, but meds weren’t  an option for fear of kicking off more vomiting. I slowly picked myself off the floor & retreated to the living room. Once situated on the sofa, I turned out the lights & put Joni Mitchell on low.  Over the next several hours,

I tried breathing exercises,

put on my tens, 

paced, 

drank mint tea,

curled into ball,

took more medication, 

vommed more medication 

watched the sun come up

& resigned myself to having a rough day. 

That’s exactly what happened. Today was a riot of pain. My stomach continued to be a nightmare. My back ache progressed into agony. I was intermittently sick throughout the day. Thus I had to cancel appointments. Most of the writing scheduled for today wasn’t even attempted. More housework piled up as I struggled to control my pain & rising panic. An acute flare like is this stressful because I never have any idea how long it might last. I could be in better shape tomorrow or I could be in hospital. I live alone & I work freelance; if I don’t do it, it doesn’t get done. I worry. A lot. I grow concerned about 

staying solvent, 

my professional reputation,

keeping my home presentable,

keeping myself presentable,

how I will keep important appointments,

letting my loved ones down, 

losing control of my mental health, 

Basically, I worry about everything, from the state of my kitchen floor to the state of my relationship. Of course all this stress is detrimental to my health. Especially with regards my to stomach problems, stress is the enemy. Likewise, stress is an anathema to sleep. Lack of sleep makes illness more difficult to cope with, but of course pain & illness also make it harder to sleep. If I can’t manage my anxiety it will spiral into panic attacks & depression. Any decline in my mental health reduces my productivity, my ability to leave the house & my chances at engaging with the world positively. Around & around I go. Symptoms exacerbate symptoms all adding up to an almost permanantly exhausted, scared, sick & sore me. 

And this is my life. This level of illness is not rare. My good days are not pain free. I don’t know when the bad times will hit. I wake up every morning with no idea if I’ll be able to get out of bed. Chronic illness is fucking nightmare. It forces you let people down, to miss huge chunks of your own life & to live that life always walking on broken glass.