Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.
Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.
I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.
I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.
I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.
It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.
Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.
Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.
Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.
I’m always bloody exhausted and I spend way too much time in my jammies. When I do finally put some clothes on my body it feels good to look good. If that can be achieved without expending too much energy, it feels even better.
Enter my new favourite dress. Classic black, goes with everything & feels lovely. Being able to just pull something over my head and feel cute is a gift. Oh & did I mention this dream dress has pockets? Well it does and I love them. Using the walking stick means I’m down to one hand most of the time, so pockets are incredibly useful.
Dress – Poche Posh
Shirt – Boohoo
Tights – Snag Tights
My hair did not stand up to the rigours of a busy Thursday (it never does), but the outfit still looked fresh by day’s end.
I went dramatic with my eyes, simple with nails & ended up looking like a person who sleeps a lot more than I actually do.
I ended up back in my Jim jams all weekend, but at least I can say I was semi put together in recent memory. I think I’ll be buying this dress in every colour to cater for all the days I require slip on style.
I’m still a little bit in holiday mode. I’m struggling a bit with some hardcore fatigue and have given myself until Monday to get back into gear. I didn’t want to leave a gap here, so I settled on the epitome of new year posts; the round-up. My 2018 favourites, if you want to get specific.
I started the year reading what turned out to be one of my favourite books of the year. ‘The Love of a Bad Man’ by Laura Elizabeth Woollett is a collection of short stories that tells the fictionalised (based on real events) account of the women who paired up with some of history’s most notorious bad men. When I say bad, I mean completely evil. It’s dark, but so original. We rarely get an insight into the lives of women caught in the drag of historical men. These imagined tellings of their relationships and (often destroyed) lives is compelling.
My favourite beauty buy (who am I?) this year was bought early on too. It was a super cheap ebay experiment that had amazing results. I have long yearned for a dramatic winged eyeliner look. Alas I have never possessed the requisite skills. Enter my new friend, the eyeliner stamp. It took only a few attempts to perfect the perfect flick. I can now cheat my way to amazing eye flare.
By spring we were already engulfed in a heat wave. The Toyboy & I took advantage of sun & slipped off on a mini break. Kilberry Bay, Tarbert is just stunning. We enjoyed a few peaceful days surrounded by the most beautiful nothing. With a deserted beach so pretty that it’s used as a wedding venue and a gorgeous view of Islay, Kilberry was the ideal spot for a rejuvenating getaway. I find the sound of the tide swooshing on the sand desperately romantic, thus this became my favourite trip of 2018.
Summer brought more sun and No Shame. Lily Allen’s eagerly awaited fourth album. I’ve always loved Lily’s witty lyrics and wry honesty. No Shame ups the auntie on all of that, a lyrical description of the collapse of a marriage, juggling motherhood, work & living. All is laid bare with, you guessed, it no shame. Just lashings of reality. Each track pulsing with the guilt, hope & grit of life.
I took until August to hit the outfit jackpot. The Edinburgh Festival was a masterclass in packing light as I knew I’d have to carry my back pack on the final day. Thus I had to think clever when it came to styling. I ticked all the boxes with this sheer/retro combo. I even managed to make my walking stick look almost cool in this picture. Which is quite a feat, believe me, navigating Edinburgh with a stick is not smooth going.
Last, but most definitely not lost least is my favourite day of the year. February 6th was without a doubt the most magical day of 2018. That’s the day my amazing little sister brought her adorable little man into the world. He has been a complete joy every day since. New babas to love will always be the best thing life can offer, so ’18 was a stellar year.
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.
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.
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.
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.
It has been a right old slog this week. I was certainly happy to make to Friday. What better way to celebrate it finally being the weekend than having a drink & dance? Well, I was only watching the dancing part, but it was still fun.
An old friend of the Toyboy’s is going abroad with her husband for work & they decided to a hit a ceilidh in one of Glasgow’s oldest pubs for their leaving do. I used to love a ceilidh, but alas, my knee stops me galloping about these days. Still, watching people really throw themselves into the moves is amusing. Even more so when it all goes horribly wrong. Ceilidh’s can very quickly descend into upbeat chaos. It doesn’t hurt that Sloan’s is a really cool venue. With an historic feature staircase, grand ballroom & some very Glasgow centric murals.
Since I wasn’t dancing I thought I better look extra good. I definitely didn’t want to be mistaken for a wall flower. So, I thought this metallic number would do the trick, especially when paired with my equally shiny brogues. I haven’t worn wrap dresses in a while, but after the success of the my Xmas day dress, I’ve fallen for the style again.
I’m not loving this one as much as my velvet beauty. It cuts across the bust in that awkward way that some wrap dresses do. Meaning one boob is always on the verge of escaping. I’m not a fan of having to adjust myself all night. It also crinkles up in a slightly strange manner, which I think makes me look like my body is rumpled & stomach is angular. Not the look I was aiming for! Anyway, I do love the cut of the skirt & the shiny, shiny fabric. I think I will wash it & give it another go. Sometimes clothes just sit nicer after they’ve been laundered. Fingers crossed.
I was chuffed with my icy blue eye make up & my high voltage nails were spot on. My silver brogues were also killing it, so it definitely wasn’t an outfit fail just room for improvement.
Watch out for a hopefully more successful restyle on this dress.