stress

Shelter from the storm…

~ somethinginthewayshemoves ~ 4 Comments

I’ve had a pretty blue day. There’s proper storm blowing around outside & I am incredibly tired, which definitely hasn’t helped. Mostly though, I feel shit because too many people have been horrible to me this week.

I had a very small day surgery on Monday, which went smoothly & really wasn’t a huge deal. It was on my dodgy leg & in a spot when stitches are very easy to burst, so I was told to be careful. With that in mind I got a taxi to the train station early on Tuesday morning (I watch my nephew on Tuesdays). The station has a little car park at one side, but that is not the platform I get the train from, so I need the taxi to stop on the main road. I say need because I mean need. If I get out in the car park I have to go out up a big flight of stairs to street level over the tracks & then down a smaller staircase to the platform. Getting out on the street means navigating one smaller set of stairs (which is hard & sore & slow enough). The taxi driver of course did not want to stop on the main road. He was annoyed that he’d have to go a little further down the road to turn at a roundabout & he didn’t want to pull over on a busy road. He argued that it made no sense when the station had a car park. Now, maybe I’m a bitch, but in my mind part of the convenience of paying a taxi to take me somewhere is that I don’t have to explain myself & I get to go where I want to go. I don’t relish having to explain my disabilities & why I can’t do certain things. Especially when I walk with a stick & it’s bloody obvious that stairs are not my friend. I did however tell the driver why I wanted to be dropped in that specific spot, but he still wanted to argue. Thus I had to say either drop me where I say or take me home and don’t get paid. With much muttering under his breath he did as I asked, which probably took less than 5 minutes more & was basically zero hassle to him. This, my day is off to a crap start & I’m already tired of just trying to move around in the world.

I struggle down the steps just in time to heave myself on to a packed train. The train is headed into town & it’s 7.45am, of course there are no seats left. I make my way to the seats that are reserved for the disabled, elderly etc and everyone sitting there avoids eye contact. I don’t know why people do this because not looking at me does nothing to reduce my need to sit down. All it achieves is putting me in the horrible position of having to ask for seat. This, I duly do. I politely ask the women in the closet seat if I can have her seat if she is able to stand. I am met with huffing & puffing as puts her jacket back on and a glare as she vacates the seat. I thank her anyway because I have some bloody manners & sit whilst others who previously avoided looking in my direction now recover their ability to see me. They now make full use of this rediscovered function to gawk at me for most of the journey. I’m sore & tired & anxious & very conspicuous. It isn’t even 8am. I arrive at central station & have to buy a ticket. There was no ticket inspector on the first train & I have to get a second to complete my journey. The ticket office on the platform has the barriers set up to control the queue. I have to walk around it to get into the queuing area & follow the barriers to actually reach the end of the line. I’m slow, i’m conscious of not messing with the wound on my dodgy leg & I am worried about this queue because I’m really not sure I can stand that long. Roll on more rude people. As I follow the path made by the barriers people just barge right past me. One women even does a little run just as I near the end of queue so she can get in front of me. What kind of dickhead rushes to skip a disabled person who is clearly having difficulty? I don’t know, but I can tell you there are too many of them & I don’t always have it in me to let them know that they’re a knob.

View from the train

Anyway, I get my ticket. I locate the platform of my next train. I find a seat because I can’t go any further until I’ve had a rest. I eat a lovely banana, check my messages & listen to some tunes whilst I gather myself. When it’s time to to head to the train I have recovered some equilibrium. I’m thinking today can be saved. One train journey & I can cuddle my gorgeous wee monkey. This is what I’m thinking as make my way along the platform & a large man barges right into me. He took me completely by surprise, I had nothing to steady myself on & went flying. Mr ‘catching my train is life’ didn’t even stop. No apology, no let me help you up. Kept marching right on & boarded his train. Incidentally his train was my train & it wasn’t leaving for 9 minutes. Whilst he presumably found a good seat I was lying on the platform bleeding. A nice ticket guy helped me up & onto the train. He even radioed someone the description of the guy who knocked me over, but to what end I have no idea. I’m not sure what anyone could really do other than tell him he was a prick. That surgical wound I was being oh so careful with is now bleeding furiously. I didn’t want to remove the dressing on the train, but I’m sure the stitches have burst (they had). So, I’m applying pressure & being watched by other travellers (again) as I try to put myself back together. I was pissed off, but focusing on gathering myself & getting where I needed to go.

Mr nephew was, as always, a delightful little bundle & I got through the day. I arrived home last night utterly exhausted & dropped into bed almost immediately. After a fitful night of sleep I awoke feeling just as tired. My leg is swollen & the wound can’t be restitched (it’s been open over night & restitching would be an infection risk). It will heal, but slower & messier. I had things to do today, but I didn’t do them. Partly because I was in a fair bit of pain and exhausted. Mostly, though, because there was a strong wind & yesterday shook my confidence. The accumulation of the rudeness, arguing, staring & knocking me to the ground was that today I was acutely aware of my disabilities. I didn’t feel up to dealing with the world & perhaps ending up worse for wear again. That realisation made me feel like shit.

cheeky baby
Cheeky monkey trying to steal my stick.

I don’t like to think of myself as fragile or incapable. I know my limitations & I try really hard to work around them. I have to think ahead. I do things a bit at a time & I sometimes have tackle things in ways that might not make sense to others. I know I can be awkward. I know that the accommodations I need can be a pest to others. All disabled people know this. We aren’t asking for seats or giving specific instructions for a laugh; it’s the only way we can live in the world. I already feel stressed & anxious about needing these things. I am certain I’m not alone in it that. So, when you force me(us) to explain ourselves it’s horrible. When you make a fuss about being stuck behind me as I move at glacial pace, you are making my life a nightmare. Your stares & sighs can ruin my day. Limping along with a stick at 37 is not my ideal life situation. Fainting on public transport is not a thing I relish. I did not choose to hurt all the live long day. I do not want to have to ask you for anything, but I can assure if I was in your shoes I’d offer my seat with good grace.

I’ll heal. I’ll give myself a shake & force myself back out the door again. I will hold my tongue (most of the time) as you push past me & roll your eyes. I shouldn’t have to, though. Living with my disabilities is hard enough. I don’t want to manage your arsehole tendencies too.

Do I wear you out?…

~ somethinginthewayshemoves ~ 4 Comments

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.

A fortnight in pictures…

~ somethinginthewayshemoves ~ 3 Comments

The weeks seem to be flying in, but no matter how many go by it is still winter. I feel like spring will never come. Anyway, the weather freezing weather keeps on, so there is less excitement to share. Nevertheless, I thought I’d give you a peek at my highlight reel.

The Toyboy put on a charity punk vs funk gig to support medical aid in Palestine. I wouldn’t have said that either genre was really my thing, but I actually really enjoyed some of he bands. Dopesickfly & Velveteen Riot being my favourites. I recommend you check them out. The night was a raging success, thanks I’m sure in no small part to my incredible purple lippie.

ly h Kerr

There have been the usual mix of clinic appointments & nights on the sofa. All that time hiding from the cold has given me plenty of opportunity to do my nails & the occasional trips out have been good Project Post it opportunities. Excursions have mostly consisted of eating & cinema. Both are excellent comfort activities. Vegan eating on high street continues to get easier. I am loving this shift because it indicates that veganism continues to rise, but also as it means I can have chocolate cake.

Nail artProject Post It

On the movie front I’m giving a thumbs up to 3 billboards outside Ebbing, Missouri & Black Panther. I am also very much in favour of the reclining chairs at Odeon Luxe. Catch up Cineworld, those seats are a dream for my poor spoonie body. The lazy nights in have yielded recommendations for Britannia & Critical. Both take a minute to get into, but persevere; it’s worth it.

The last week or so has been fairly cocktail laden. Birthday drinks for a friend gave me a chance to finally taste a Candy Floss Martini. A thing I have been hankering after & which absolutely lives up to expectations. Get one. Right now. Some high stress nonsense led to homemade strawberry margaritas with a lot of tequila. Admittedly not a great long term solution, but certainly an ideal way to temporarily let off some steam.

ly h KerrStrawberry Margarita

I got flowers from my Mum, a card from my man & rocked some damn cute looks. I also captured a few beautiful winter moments. Yes, this season can be stunning, but it’s still too bloody cold!

Upside down standard lamps Project Post It

Project Post It

Blurry sunset

Oh & the cats in my life continue to be gorgeous.

Cute cats

You’re clouding my mind…

~ somethinginthewayshemoves ~ 3 Comments

Nothing bad happened this week. No extra stressful event. No triggering sights or scents. In fact, it was quite nice. Easy weekend with my man. Luxuriously relaxing day with my sister. Words were flowing. I had nothing more taxing than baby shopping & light housework scheduled. All should have been well, but no one told my brain.

At some point on Monday night my head switched from calm to high alert. Try as I might I can not decipher why. I was one minute thinking about what colours to paint my nails & the next desperately trying to pinpoint my panic. It happens that fast. Like a storm cloud darkening the sky, my mood stiffens. Suddenly my only thought is why do I feel like something very, very bad is about to happen? All I can do is run through every aspect of my life & weigh up how likely disaster is. It doesn’t matter that my checks come up empty. That only makes the anxiety worse. Even If I can’t locate a likely impending crisis, I still feel on the verge of one. The disparity between my thought & feeling drives me crazy.

My body betrays me. It takes its queues from my beleaguered brain. Thus every gust of wind or car in the street sends my heart racing. I can’t relax. I can’t sit still. I can’t get anything done either. My head is too busy with the millions of terrible possibilities it has to discount. I can’t concentrate properly, so every task takes twice as long as it should. Or just doesn’t get done at all because you know, the post man came & I had to hide in my bedroom. What I was hiding from, I don’t know. I can’t think of a single scenario in which someone knocking on my door could realistically lead to a catastrophe. Nevertheless, I cower.

It’s exhausting and it is maddening. Free floating anxiety. I’m basically just fighting with my own stupid head. There is nothing to fear except fear itself. I think that phrase is supposed to comforting; not for me. Illogical, inexplicable fear itself is a formidable opponent. I’ll be ok. Can someone just please tell my brain.

I don’t know where I stand…

~ somethinginthewayshemoves ~ 10 Comments

About 7 months ago, after years many years of knee pain & a limp that had become almost permanent I had an X-ray that revealed arthritis. After even more pain & increasingly frequent falls my Dr recommend a walking stick. 

I had been experiencing pain in my right knee for years. When I first mentioned it to a Gp he put it down to a small accident I had whilst playing with my niece. I had plenty going on health wise & at the time it wasn’t a constant or severe pain, so I left it at that. The knee got progressively worse & I mentioned it a few times to various gp’s but no one was worried & it got sidelined by more immediately pressing health issues. By the time I really couldn’t ignore it anymore I had been diagnosed with fibromyalgia. The knee pain was attributed to fibro & that was pretty much that. The pain however continued to get worse. It hurt all the time, standing or sitting. It even  woke me in the night. Then came the swelling, then the limp shortly followed by the knee giving way & me falling on my arse more than once. Back to my Gp I went, but only to seek advice on what might help my knee; I believed it was fibro related. Finally, over four years later I was sent for an x-ray, which revealed significant erosion in my knee joint. I didn’t expect to have a condition like arthritis at 37 & I certainly never envisioned myself with a walking stick, but here I am.

Foot & walking stick

There are so many things I could say about the difficulties of getting a diagnosis or even investigations when you have chronic conditions. So often when medical professionals see things like fibro in your notes they will just link everything to that. When you have multiple chronic conditions  multiply the difficulty. Add to that mental health issues, being a woman, being fat, the drs who think everyone with chronic pain is drug seeking & honestly, I’m just exhausted. Yes, it could have been spotted sooner. Yes, I would probably have a better prognosis if it had, but at this stage I’m just too tired to even think about that. There isn’t anything that can done about it anyway. It is what it is. 

Unfortunately what it is is pretty shit. On a number of levels. I hate to admit it, but there’s been a real mental adjustment along with the physical. I find it really hard when people see me with the stick for the first time. I worry that they’re thinking, oh god, she has another thing wrong with her. I worry that they’re embarrassed. I worry that I’m just too much of an inconvenience. 

I hate it, but a walking stick is a blow to the self esteem. I don’t feel particularly sexy as I hobble along, so obviously I question if others will view me differently. Intellectually I know there is no weakness in disability, but emotionally I feel weaker. I feel less useful.

Less fun.

Less appealing. 

All the while I’m telling myself what nonsense that is. That I know better than to indulge in such ableist thinking. Then I think if I, a disabled person am having these thoughts, then others certainly are & that’s not a productive thought process. I’ve already experienced how ignorant the world can be. How many people will still push past me or not offer me a seat. I’ve learned that places who bill themselves as accessible, just aren’t (and my mobility is still so much better than a lot of people’s). The weird thing is, I think the kind folk are almost harder to take. Every time someone offers to let me skip them in a long queue or asks if I need help, I feel utterly exposed. I’m grateful for the seats & the consideration, but I still feel very vulnerable about needing them. I’ve put so much stock in the power of being independent & capable that another level of disability is a struggle to accept. Yet, writing those words feel very indulgent. How dare I ‘woe is me’ when things could be a millions times harder, as I know they are for millions more if people. I know some of this linked to my mental health issues. There are familiar themes here; shame, guilt & a big helping of get over it. I suspect though, that maybe these feelings are pretty common for those dealing with disability. Thoughts & feelings aside, life is just a bit harder. For me & I’m sure for those around me. I’m slower & more limited. I can’t go anywhere without checking a dozen things beforehand. I’m grumpier & less reliable. Spontaneity is out, relentless checking is in. I hurt more. I need more rest & assistance. I find everything exhausting. I sound like an absolute joy to be around, right?


Finally, there is the stress. All of the above is stressful. Everyday tasks, trying to do something fun, the future are stressful. Attempting to manage all the stress, is stressful! 

I realise this is all sounding very negative & I don’t want to be that person, but I do want to talk about it. I’d like there to more of a conversation about chronic illness & disability. I’m sure some of this will get easier. Some of it won’t & I’ll have to adjust. Spoonie life is nothing if not challenging. The opportunity to spill my guts definitely makes it a little bit easier. 

But I ask where is the poetry…

~ somethinginthewayshemoves ~ 4 Comments

I’ve had a rough couple weeks. Ill health (myself & others), unavoidable obligations & insomnia rearing  it’s ugly head have led to an incredibly stressed out ly. Alas, the blog has suffered. Normal service will be resumed soon. In the meantime I offer a small poetic interlude. 

I find poetry incredible cathartic. I often attempt to write away my troubles. You’d be surprised how often it helps. 

A day in the life…

~ somethinginthewayshemoves ~ 3 Comments

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.  

Blackbirds singing in the dead of night…

~ somethinginthewayshemoves ~ 2 Comments

It’s 5.07am. There are some very loud birds outside & the light is creeping around the edges of my blackout blind. I haven’t slept, but I do finally feel a little bit sleepy. Do I sleep? If so I might sacrifice the day. After no more than a couple of hours for the last few nights I might conk out big style. I wanted to do something today. Something nice enough to make me feel like I’m participating in normal life whilst still being easy. Sleeping all day does not fit the bill. Although, perhaps I’ll wake up feeling rested & be productive. If I could complete one of the many, many things on my to do list it might relieve a little anxiety. For now I’m stuck in the vicious crazy circle. No motivation + no energy = accomplishing nothing. As the things I have not done pile up so does my anxiety. Until the undone things & the anxiety are so huge that I’m paralysed by their weight. I’m just stuck underneath, stressing & not sleeping & feeling increasingly worthless. So, maybe I should sleep. I’m exhausted. I’m always exhausted because I never get enough sleep. There is always something keeping me awake. Be it pain or fear or coughing or nightmares or vomiting or the terrifying vagueness of insomnia. Right now I feel that illusive part of tiredness that usually escapes me. The fuzzy comforting drowsiness that signals actual sleep is a possibility.

But

If I sleep now, chances of sleeping tonight are slim. I could miss the chance to do a thing that could make me feel something other than grey or jittery. If I close my eyes now I’m risking the dreams. Flashing scenes dripping with all the things I cannot bear to look at again. Flickering images soaked in feelings too potent for consciousness. Then I’ll wake in a mess. Heart pounding, breath hiding & I’ll have to talk myself down. Fool myself into a calmness that’s counterfeit. Either way the day is scuppered. All those hopes for lightness dashed. 

So, I stay awake. I’ll just wait in this cool dark room for the day to really get started. Force myself into the shower. Try to make a plan that doesn’t feel overwhelming. Push down the fatigue & the jangling of every nerve for the possible reward of OK. Reassure myself that this isn’t forever. Repeat that I am not back in the hole. It has been a difficult month. I am allowed to feel bad. Tomorrow or the next day or the day after that will be an easy one. Just keep going. Swing from one pleasant moment to the next & hold my breath through all the rest. 

This will pass

I will write the things that are over due

I will do some god damn washing 

I’ll cook a proper meal 

&

Wash my hair

Peace will be restored 

Life will go on

&

I will live it. 
If only I could get some sleep…

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