exhaustion

I’m not sorry…

~ somethinginthewayshemoves

I believe the ‘May you live in interesting times’ debate is well and truly settled. These times are no blessing. Life has become that dog in the burning house meme. We’re all expected to carry on, but hey, I don’t think any of us are fine.

Dog in a burning room with a speech bubble saying this is fine

In recent years we’ve had the rise of the right. Politicians who have zero interest in the common good, civic responsibility or even telling the fucking truth. Police are still murdering POC without consequence, whilst they simultaneously neglect to intervene when a maniac massacres small children. The poor get poorer, the rich get richer. Footballers have to intervene to feed hungry children because our leaders have absolutely no interest in people who aren’t just like them. A global pandemic is killing millions and spawned a new kind of selfish. The same people who won’t wear a piece of cloth on their face to protect other will happily force a ten year old child to give birth to a rapist’s child. A new, extra virulent type of anti vaxxer has infected our society. Marginalised groups are more at threat than ever; hate crimes soar. The American right to a gun cannot be challenged, but abortion, gay marriage, trans rights, basic medical care and voting rights are always on the table. The tories lie, cheat and steal right under our noses. They rape and harass to no one’s surprise and the party doesn’t even have the decency to be embarrassed. Parliamentary goal posts are moved at will, Mp’s get a raise and workers whose wages don’t even keep up with inflation are shamed for striking. Covid, corruption, inequality and of course inflation rage. The PM has gold wallpaper and blow jobs in Westminster. The rest of us dread the electric bill and can’t afford butter. While he’s paying his various flings with public money disabled people can’t even co habit without losing meagre government assistance. The earth we stand on is crumbling beneath our feet and I haven’t even scratched the surface. There’s a whole world of cruelty out there, it never ends.

Did you think that paragraph never end? Where you begging for full stop followed by nothing? Join the club. This isn’t burnout. I don’t need a bit self care and neither do you. We need a revolution. Watching the scummiest humans on the planet make everything worse day after day, year after will destroy any decent person.

If you feel like you’re losing it, I think that’s perfectly reasonable. If you’re angry and sad and feel utterly helpless, I’m right there with you. I am sorry that you’re expected to carry on regardless. I’m sorry that you must live in these intolerable times without any grace. I don’t know what will make any of this any easier, but if you do, please give that to yourself. Don’t apologise for what you need or your reaction to our atrocious world. Nothing is ok, we don’t have to waste energy pretending it is.

* Obviously let’s all organise, protest, donate, vote and support each other as much as we are able. Change won’t happen if we don’t force it, but please also take care of yourself.

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Sisters in arms…

~ somethinginthewayshemoves

I’m tired. To the bone exhausted. It’s been a relentless year, like everyone else I’ve just kept trudging along. This weekend I hit a wall. I doubt I’m alone.

The convergence of Mother’s Day, police violence against women & the flood of abuse/harassment stories that women have been sharing was overwhelming. Especially when I realised how many similar cases of missing or dead WOC I had never even heard of. Women the mainstream media had little interest in. Women who in some cases haven’t even had their death investigated. I’m not shocked by any of this. I know this is the world we live in. The abstract knowledge doesn’t make each individual case less painful. When you combine one’s own pain with the agony of the collective it’s crushing. It never stops. It never changes.

I’m aware that I’m feeling all this from a position of privilege. I have more space & safety to process. The police would likely pay attention to my family if I disappeared. I know my exhaustion is relative, but god, it’s heavy. I wish it were possible to ease the heavier weight I know many are carrying.

I don’t have any new answers. I’ll keep writing to MP’s, protesting, amplifying marginalised voices, putting my money where my mouth is. It’s a struggle to feel hopeful at the moment. So, I’m going add to taking care of myself to that list. I don’t know what that care looks like yet, but I’m working on it. I urge you to take whatever time you can & give yourself a little TLC too.

Illustration of horse, boy,Fox & mole from Charlie Mackesy
Charlie Mackesy

If you enjoy my writing you can support me on Ko-Fi

Make it easy on yourself…

~ somethinginthewayshemoves ~ 6 Comments

2019 has barely gotten going & it’s been rough already. In a matter of weeks I have lost my baby & my boyfriend, which is less than an auspicious beginning. If I sound flippant, I’m not, I’m just trying very hard to put one foot in front of the other.

The demise of my pregnancy is devastating. My relationship’s end is sad, but the right decision and that’s about all I have to say on the topic. I find myself approaching the year (and my life) alone again. Being single hasn’t ever worried me all that much. I’m definitely not scared to be that kind of alone. Childlessness on the other hand, terrifies me. What do you when you’re facing your biggest fear? I haven’t a fucking a clue.

#projectpostit

For the time being I have taken the clichéd approach of one day at a time. I’m trying not to spend every day at home in my jammies (there is however a lot of crying on the sofa). Functioning is a struggle for a multitude of reasons. Primarily, I am exhausted. I’m always tired. Add even less sleep, the effort it takes to contain my anger at life itself, the fact that I will not stop bleeding, so despite the blood transfusion my haemoglobin level continues to flag and you get extreme fatigue. Having a different emotion every 5 seconds is tiring. Battling (& often failing) to contain the tears is wearing. Breathing & washing & conversing & not screaming is all taking gargantuan effort. The truth is I’m not managing very much. I’m practising being ok with that.

Blood transfusion, Rose wine, snuggling cat, reading baby

I recommend spending time with people who don’t expect too much of you. I’m giving priority to anything that give me comfort; my little people & potatoes pretty much have that covered. Hot baths have featured heavily as has ‘fake it ’til you make it’ make up. There was one afternoon of day drinking with a lovely friend that actually helped a lot, but not something it would be wise to make a habit of. My purring cat is a godsend. I’m reading, sleeping whenever I can and endeavouring to be gentle with myself.

ly h Kerr

I have no clue how to tackle the overwhelming sense of guilt. Chipping away at how ‘not fair’ this is may well take the rest of my life. I’m focusing on the small stuff. Giving myself a pass on the growing mountain of washing, the ideas that go unpitched and being awfully rude to the person who called about my non-existent road traffic accident. I find it harder than you’d imagine to let that stuff go. Being hard on myself comes easy. i have learned that when life gets you on the ground it’s worth tackling the instinct to kick oneself whilst already down.

Sunset

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The Spoonie Guide to Xmas…

~ somethinginthewayshemoves ~ 1 Comment

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a tonne of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a meet up for a phone, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.

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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.