Ableism Disguised As Environmentalism

Plastic. Especially, plastic straws. They’re in the the news, they’re all over social media, there are signs and changes in all the big chains. And in one way, I totally understand that; we do need to take care of our planet, especially our oceans, and and it is massively important we teach the younger generations to do the same.

However. And it is a big however.

Going after plastic straws is not the way to go. Not only is it not objectively the most practical option when it comes to reducing the use of plastic, it is ableist. Hear me out.

People with a range of disablities and health conditions rely on straws on a daily basis. Speaking just from personal experience, I need to use straws for a range of reasons. When my hands are shaking too much. When my fingers and hands cannot support the weight, or are dislocating easily. When I’m laying in bed and moving my head makes me too dizzy. Sometimes my body is too shaky, and holding a mug is asking for spills and potential burns. My body can jerk suddenly, in pretty much any area, without warning, so again the risk of burns, or damage to my teeth. Drinking from a straw helps drinks stay down better with ny gastroperesis, which for thosr of you who are lucky enough to not be familiar with, means that things you’ve swallowed not staying down.

And these are just some examples, off the top of my head, that impact me. One person. If those are a few of the possibilities for one human being, the number of issues is endless.

So, straws are needed. The fact they need to be plastic is another issue.

Paper straws are fine…. as long as you don’t have any issues with your mouth and jaw. If you need to chew whilst drinking, have issues with textures, have a jaw that can clamp, or – again – goodnes knows how many other symptoms or problems that might impact on you drinking, straws are an essenital item.

Reusable straws are a great thing. Genuinely think they are awesome! Glass, ceramic, metal. There are even collapsible ones now, which go into a little bag that can clip onto your keys. Brilliant plan.

If. You. Are. Able. Bodied.

I’ve had people act as if the fact that plastic straws are being replaced by paper straws in mainstream cafés, and the fact there are options like reusable straws, wipes out the issue. It doesn’t, and that’s what this post is trying to stumble at. It doesn’t just erase the need for disabled people, because these things work for able bodied people. It’s not that simple.

I know that some – hopefully, most – people have come to the conclusion that all is solved simply because they haven’t considered the possibilities, and that’s okay. How can you know, unless you know? It’s the same with people not thinking about parking on the pavement until they see a wheelchair or guidedog. And then next time, hopefully, you park elsewhere.

That’s what I’m hoping this post will do. Don’t judge people for using straws. Don’t turn your nose up at those who are struggling. Just like other stereotypes and in built judgements, like homophobia and sexism, ableism is there and is prevalent. There are active prejudices and low level prejudices, and thinking that plastic straws are a novelty is the latter.

Whilst this post is mostly about straws, it is also worth as an aisde mentioning the extra ableism that goes on in regard to other plastic disabled people need. From ready meals to medication strips, syringes to vitamin bottles, there are all sorts of things that again, may seem optional or not needed if you are able bodied, but are things that have to be factored into your day to day life wheb you have health conditions.

I take six different medications on a dailt basis, plus extra, and eight different supplements when I can keep them down. One of my medications, for chronic pain, I take nine tablets a day. It comes in plastic strips of ten. So I go through nearly one a day. And that is just one med. I don’t have a choice about that. It’s not my fault. All I can do is take my tablets and try to function.

We do need to work on helping the enviroment as much as we possibly can. My son is a massive eco warrior, he is eight and already feels passionately about it; without wanting to blow my own horn, he wouldn’t be that way if he hadn’t been taught at least some of it. I am not heartless, but that’s rather my point. It needs to be a balance. There needs to be love both for the environment and for the people living in it.

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I had a shower today

Sounds silly right? But this is an achievement. It’s been a few days…

I always promised myself – and probably at some point you all – to be completely honest about my life here, and the struggles that come with it. Being chronically ill  isn’t full of glamour and sexiness; I must confess that whilst I’m open minded, the fetish that revolves around being unable to do things disgusts me. I know that may well sound odd but I live in a very liberal city and you’d be surprised what you over hear! 

Little tasks take so much energy. It is often exhausting just thinking about the things I need to do, to the point where I just want to hide from it. Typing this on my tablet is involving lots of breaks and I’m leaning against a pile of pillows. And this is a task I’ve chosen to undertake, not one that I need to do. Having a shower is one of those things that needs to happen regularly but is utterly debilitating. It leaves me dizzy, weak, and normally with a migraine because of the change of temperature. The relief of having clean hair and skin is lovely, but the amount it costs is something that I really have to consider. 

Today was a day that took a lot out of me. I had to find a dress for a funeral, which is an emotional statement in itself, as well as the physical issues. I tried on twenty items of clothing today. This takes a long time, as I need to test in between items as well as how slowly O have to more when using my shoulders and hips. Both are frequent sublaxers, both are incredibly difficult to work with. It’s hard work and normally my approach is to buy things, try them on at home and return what doesn’t work. That wasn’t an option in this situation so I had to push myself in several ways. God it hurt. My endometriosis was screaming, my pelvis was on the verge  of going, and my hips felt like they were going to break through my skin. Having had my physio session yesterday didn’t help, I’m sure. I’ll write more about that soon. Long story short, it was a difficult and painful but I found a dress, which is both suitable and very pretty. 

So now, both shopped and showered, I am in clean pyjamas, comfy in bed, watching wonderfully trashy TV, and plan to stay this way until it is time to snuggle down. Husband changed the bed yesterday so the sheets feel lovely and clean as wdll. 

Little tasks for a healthy person might be a bit dull or frustrating, but for someone with chronic illnesses it is overwhelming. The pain and fatigue, the stress and anxiety, all bundle together to make it something that means every tiny thing is almost a distant dream. 

God I miss being healthy. 

This isn’t a depressive post. I’m in a good head space. It is purely a realistic post. 

Finding strength

When life gets overwhelming, it’s easy, and natural, to want to hide away, and I’d be lying if I said I didn’t say I don’t do my fair share of hiding. There isn’t any shame in needing to do so, but it is important to come out the other side. It doesn’t matter when or how or why, just as long as it happens at some point, in a way that is best for you.

I’ve been hiding lately. Life has thrown a few curveballs and my health hasn’t been great. My stress levels have been high. I know they have, as, even when I don’t feel too stressed, my sleep goes down the drain. I go back to struggling to sleep, waking up in the night, and having more nightmares. Interestingly – and frustratingly – the first two issues don’t impact me during the day when I need to nap, but the nightmares are still just as bad. On top of sleep being problematic, and possibly connected to it, my fatigue levels increase and suddenly I’m just a wibbly mess. So I hide, in ever way possible. I withdraw in person and online, I’m snappy with those close to me, and I take to just laying in bed, either sleeping, or staring mindlessly at my phone, scrolling through social media but not even taking it in. That whole cycle in itself makes me more down, and I become more wrapped up in it. I’m fully aware of the way I get stuck. In the past, I’ve punished myself for behaving like this. Post trauma therapy, I’m practicing being kind to myself, and letting my body and mind do whatever I need to do, within reason obviously.

I’m slowly starting to edge out of hiding. Slowly being the operative word. I’m pushing myself slightly, admittedly, but with the inclination to do so, which – I feel – treads the fine line between respecting my needs and giving myself a shove. I’m starting to socialize a little bit more, by text and online, although I haven’t been well enough physically to do much in person. That’s a goal for the upcoming weeks. I always used to resent goal setting when asked to do so by professionals, but that is one of the things that has shifted through my trauma work. I would by lying if I said I would run happily towards a goal setting exercise, but recognizing my personal goals, knowing what is right for me, can only be a positive thing.

I called this post “finding strength” for a reason. I’m talking about all of the above as if it is simply logical and easy. It really isn’t. Listening to my body and brain is sensible, but even that decision takes locating strength. Getting to a point where I can recognize the strength I am using is an achievement that I’m genuinely proud of. Finding the strength to do whatever it is I’m needing at that particular time is always something to respect, and of course it’s not just me who has to do that. Everyone does. Every day, there are decisions and moments, large or small, that take strength, and finding yourself capable of doing such is a wonderful thing.

That isn’t to say of course that it is a failure when you can’t. Just like hiding away, it is a totally normal part of life. Knowing you can find the courage or ability to handle a situation feels almost like magic after years of feeling incapable of even the smallest things. That said, don’t ask me to choose what I want on a pizza. I’m awful.

Things like crochet come in really helpful when it comes to trying to locate small gleams of happiness and hope. Crochet is both a hobby and a tool in my life that I use to push me forwards when in hiding. It’s a good, relaxed way of getting myself to do something other than hiding in bed. Even if ir means that I’m sat in bed crocheting, it is by far one of the most useful things at times. I’m regularly grateful for wool crafts in my life, both for the sense of achievement they give me, but also – and maybe more importantly – for the strength they help me find in some of my most difficult times.

I’m babbling a bit here. It’s been a weird period of time lately, and whilst everything I say here is merely a projection of my mind, it is also a therapeutic exercise in itself simply writing.

I’m crawling out of a hole here, and hoping I can stay out of it for a while.

After the interlude

Hello friends. It’s been a little while, hasn’t it?

Life has kind of slipped on by, between flare ups and appointments and sleeping – a lot of sleeping. With the end of Zoladex has come the return of the symptoms that so control my life, and the exhaustion is so all consuming. I’m sat here typing this in my pyjamas. I managed to drag on a clean pair of pj bottoms as a friend was popping over briefly, but that is about as much glamour that is going down here lately.

Whilst it sounds a bit depressing, in reality I’m okay. I knew it was going to decline after those lovely six months finished, and I knew also that things always feel worse when you’ve had relief from them. I was prepared. Well, as prepared as you can be when imagining something. I knew this was a journey. I knew it would be bumpy and painful and difficult. I knew it DEFINITELY wouldn’t be fun. And that’s okay. Life isn’t always sunshine and roses. But it’s a ride, isn’t it? It’s an experience, no matter what today is showing.

I’m feeling grateful for being here. I’ve been down to the lowest of lows, and even tried not to be here any more. But oh, I’m so glad I am. Little things have come to mean so much. Some days, stuck in bed, a purr from a cat or a beautiful sunset or a good cup of tea, they are the highest of highs.

Things are both difficult and wonderful, both up and down, and honestly? I wouldn’t have it any other way.

Brighton council should be ashamed.

So if you follow my Facebook page CaffeinatedCraftingCripple you may have seen the post I shared last night. This is a post from my personal facebook page, regarding the disabled toilet and changing area I came face to face with yesterday. I said I would be writing about the situation, so here goes.

Yesterday I took LittleCrafter to play at The Level in Brighton, to enjoy the sunshine in a different park whilst I chatted with a friend. I’m a wheelchair user of course, and I knew from when they were doing the park several years ago that they haf built toilets, including a disabled toilet. With my endometriosis effecting my bladder and bowel, I need a nearby toilet, and knowing there was one within a minute or so from the bench we found in the play area mean I relaxed and had a lovely time. LittleCrafter found friends to play with and all was lovely.

After a nice long play, we decided to head for some coffee, via the disabled toilet. Reaching the building, there was a locked door with no further information. A sign in the cafe window said that they had no responsibility for the public toilets. I was a bit stumped, and really in need of a wee. My endometriosis causes a lot of pain when my bladder gets anywhere in the direction of full.

I went into the cafe to ask if they knew what to do about it – thd toilet, not my endo – and was lead round to the other side of the building, where there were more disabled toilets, with a changing room sharing. The man informed us you had to call the number displayed, give your location, and you would be given the code. This was run, the paper said, by Brighton and Hove Council.

I have NEVER heard of a system like this.

I have been a wheelchair user for a decade now, and this is bizarre. The disabled toilets are usually accessible by use of a Radar key. Of course I understand that in a public park, the toilets need to be locked because there will always be silly people. But that is what the Radar Key is for. It is simple, straightforward and inclusive. Instead I had to sit there, getting increasingly uncomfortable, whilst my friend made the phone call for me, to get permission for me, a mother, wife and home running woman nearing thirty, to urinate.

I felt so shamed, shunned and patronized.

So my friend made the phone call. She had to give her name, number, and the location on the paper. They then ended the call, saying they would call her back with the code.

Think about this for a moment.

This involves two phone calls, a conversation, a wait for the return call, and the entering the code into a key pad. The delay of this is enough to result in people with bowel and bladder conditions to have accidents. The phone calls, problematic for those wigh sensory impairments and mental health issues. The key pad with it’s small keys are an issue for those with difficulties effecting their hands and arms.

The whole thing has not been thought through with disabled people in mind.

Frankly the whole thing is so ableist, I don’t have words to describe how awful it is.

When all of this wa done, this was what we saw when we opened the door.

Self care comes in all forms

Taking care of yourself is almost mocked in the media, seen as some millennial indulgence that is mere hilarity, rather than an essenital component to living a healthy life. There are so many things that come under the bracket of self care, from two weeks in paradise to taking medication, and none should be shamed or belittled.

Life is hard. LittleCrafter shouted at me the other day, “Life isn’t fair!”, and he’s right. It isn’t. And so sometimes we havr to make sure that life is as good to us as it can be. It’s not silly, it’s not a failure. Doing a yoga class or putting on some face cream, painting your nails or breathing slowly for thirty seconds; taking care of yourself is entitely legitimate, and I applaud you for it.

Lately my mood has been low, and I’ve struggled with managing my sense of failure. I had – have – high expectations of myself, and no where in my life plan was being infertile at 26, needing my husband to care for me, stuck in bed half thr time and in a wheelchair the other. I have been furious, tearful, jealous, angry, wanting to scream and pound my pillows, if it wouldn’t cause me so much pain. I’ve reatreated somewhat into myself. I’ve been finding just merely existing a punishment; not in a “not wanting to be here ” way, thankfully my mindset hasn’t dipped that low. But in that the way my life has played out is enough to make me consider past lives, thinking I must have really pissed some Almighty off generations ago to wind up in so much pain. My usual held together approach has slipped and even functioning has been hard.

And so back to self care. I had already been practicing Mindfulness, face masks, nail varnish, craft – my usual little things. But I needed something more. With support from surprising sources, I decided to sign up for some online study courses, to give myself both something to focus on, and a sense of achievement. When life was supposed to be full of success, finding yourself staring at the ceiling so often is immensely depressing.

One course is free, with weekly assessments online. Another I paid for. Neither offer a formal qualifications, but my goodness I cannot put into words how amazing it is to use my brain again. It is frustrating at times because of brain fog interfering with studying, and because of being too tired to do homework and research thay I would like to be doing. But being tuckes up in bed, screen propped on a pillow, listening to a lecture that brings joy to my life is some way of accessing how things SHOULD have been.

That feeling of SHOULD, that SHOULD life, ia like a ghost hanging over my life at times. I can ignore it most of the time: holding onto it would make you bitter. But when that happens, it’s nice to know that a little bit of remembering to love yourself in some way, shape or form, can really turn the mood around.

Self care shouldn’t be mocked as a tool to recovery and / or stabilization. It is valid, wonderful, and proactive. Keep going.

What’s that coming the hill? It’s the endometriosis monster!

I feel like I’m living in a whirlwind. Life feels wild, all around and within me. I want to be enjoying life with the new found freedom from some of my PTSD, and yet there is my physical health, waiting to trip me up.

At the moment, the biggest fear is knowing the inital six months of Zoladex is nearly up. This is terrifying me. The months before starting treatment were like scenes from horror films, and needing to go back there is the least appealing thing anyone could be instructed to do. I always knew it was the plan. Six months on, three months off, review. Sounds so simple to write it up like that. But the reality is very different. First point is that’s 3/4 of a year out of my life we’re discussing. Then there’s the practical points. Six months of injections is tolerable, even if they are fucking big needles. It’s over in seconds, and that’s the next four weeks covered. It’s the months after that are worrying me. I’ve become so comfortable at low level pain, I almost don’t know how to fathom what I’m returning to when the last one runs out.

I don’t think I’ve ever been this scared of pain. Being in pain chronically, I’m used to being in pain and fearing it doesn’t help, so I try to just face it head on and roll with it, but with this looming, I am terrified. And I know I’m going to have to go through it, because if nothing else, I need to prove the bloody point that I have endometriosis! It’s exhausting and scary. And infuriating. I’m angry that I am another woman in the system having to prove my gynecology related pain is real.

The months before Zoladex were agonizing, bloody and tearful. I slept endlessly so wiped out by pain and blood loss. I’m so scared of that comimg back. I can feel the ghost of that pain hovering around and knowing it will be back to haunt me before I can truly move forward with my life is such a hideous fact.

In the past, I have had a grapefruit sized dermoid cyst, two lots of adhesions, and a tube twisted so tight I nearly lost the tube. My second surgery, with one round of nasty adhesions, when I came around, my first question was, “Did you take anything out?”. They looked at me like I was mad and said no. I burst into tears. I was told to shut up and not be so ungrateful as the woman opposite me had just lost a tube.

I really need a third laparoscopy to see and remove whatever is causing issues. I’m now sure, with medical support, there is endo on the bowel as well as elsewhere, and the only way for that to be addressed is surgery.

What a surreal thing; to be requesting surgery for a desperate chance at some normal life.

A Cripple Snow Day

It’s the 27th of February and today was a snow day! What a bizarre turn of events. I’ve never known such late snow (although of course I could be wrong), and the best bit, on a selfish level, was that it was the first proper snow that LittleCrafter remembered.

The school was open in the morning, although it closed at midday, but I was stuck; they grit the roads, but they never grit the footpaths! So as a wheelchair user, getting there and back, twice, the school runs are always a bit tricky when it’s icy. Add a few inches of snow, and it gets complicated. Snow is lovely to look at but as soon as it gets crushed, it becomes sleet. And wheelchairs don’t fucking like sleet.

So I called the school and explained it would be a snow day here, as I was stuck. LittleCrafter was perfectly happy with this, as he had been bouncing off the walls since waking up because SNOW MUMMY LOOK SNOW DAD OMG SNOWWWWWW. The word ‘snow’ was wearing thin by 9am, I must be honest.

The roads to Husband’s work were awful according to the local bus app, and that combined with me still being so ill at the moment – all well and good being unable to do the school run, but I also currently stay awake for multiple hours, which feels like a massive point of failure personally – he was needed at home. Which of course meant a 9am snowball fight.

I managed a few minutes of wobbling before the pain became too awful and I needed to go and lay down again, but LittleCrafter and Husband continued to play in the garden for a while whilst I slept. It was a painful dsy for me physically, but was also a balm for my soul; the look on LittleCrafter’s face making his first snowball, practicing aiming at the window, cackling as snow was swirling around him…. best cripple snow day ever.

It’s been really hard being so ill recently. It’s demoralizing and emotionally painful. Feeling like a failure, like life is playing a cruel joke sometimes. I’ve been quite low again of late, and the precious little moments I took from today will propel me through the next days of pain.

A Positive Appointment

I had an appointment arranged with Digestive Diseases by the Rheumotology department several months ago. It’s taken a while to reach the top of the list, but was well worth the wait. That said, it was of course one of those awkward times where I had no childcare, so had to take LittleCrafter with me, which is always a) somewhat humiliating, and b) always expensive as I end up buying all sorts (in this case, a book because comics are now the same bloody price so it might as well be a book, a Costa strawberry cooler bloody drink, and a slice of bloody cake. Sigh. Spoiler; he was superbly behaved thank YARN and even the doctor complimented how he had he had been, which was rather a relief, as I can’t help feel extra nervous taking him with me.

I digress.

This appointment came through, and off we went to the hospital (book, drink and cake in tow), and wove our way through the maze of hospital floors, until we finally found where we were headed. We were only waiting about ten minutes, and there were designated wheelchair spaces in both areas, so it was quite pleasant, in as much as these things can be. There was a nurse who faffed a tad too much because I was in a wheelchair, but I managed to keep a smile firmly on my face, almost as firm as my “no thank you, I’m fine”. These little moments are always hard to handle, because she did mean well. But she paid far too much attention to me in comparison to the others in the waiting room, and that’s when it become slightly difficult to handle.

When the doctor called us in, he informed me he had two medical students in with him. I never object to medical students, and that’s two fold. Firstly, every training doctor needs to learn as much as they can, and I would hate to waste their time, having them be sat in the waiting room when they could be gaining knowledge seems pretty crappy on my part. Secondly, I am a complex case, and so possibly present more information, or at least more variation of information, which I hope could help patients to come. All of that said, I also respect it is entirely individual, so I am in no way judging those who chose not to have medical students in the room, these are just my personal musings.

I had been anticipating the appointment for a while, and since starting Zoladex, my symptoms have changed so much I was worried he would think it was a waste of time seeing me. I couldn’t be more wrong. He took a full medical history, then we discussed the change in my symptoms since beginning Zoladex. He pressed on my abdomen, which was delightfully painless (or at the very least, with no major pain) and then agreed with my theory. The theory being that there is endometriosis on the bowel. My symptoms have changed so much in so many ways, but the bowel related changes have been particularly interesting. If you’re squemish feel free to skip the next paragraph.

Before December, my bowels were very problematic. Urgency (and I mean, only just making it), extreme pain, constipation, nausea, stabbing and spiky and swirling pain. It was a massive surprise and delight to find these things changing when my Zoladex kicked in. What I thought was lactose intolerance disappeared. Even my senstivity to wheat vanished, although I have still been keeping that as a low to be safe. All of this pointing me in the direction of thinking that there is endometriosis on the bowel.

I discussed all of this (with Little Crafter having headphones in, listening to an audio book), and the doctor agreed with me that it certainly seemed that way, and gave his support to my theory, which if nothing else is reassuring that I’m not totally losing my mind. He ordered some blood test and a coeliac test (which, for anyone who doesn’t know, involves a poo sample. Yes. A poo sample.) to check things over, so I am now eating a lot of wheat for six weeks, and then a sample. One suggestion in our discussion was that I do have lactose intolerance, and / or possible coeliacs, that is then being irritated by the bowel endo when it is in flare.

In all it was a really positive appointment that I felt I really benefited from, and hopefully has pointed things in the right direction. If nothing else, I felt it was important to go to my next gynecology appointment with back up having ruled out IBS as a cause of pain (because any woman out there will know that it is that and hormones that apparently cause anything).

This recent health journey has been complicated, emotional and hectic, but I feel like we’re really getting to where we need to be now. Fingers crossed.

“So what do you do?”

I’m an introvert. Meeting new people is hard and awkward, even if I enjoy it in the end. Part of the whole problem is the dreaded question, “what do you do?”. It’s a pain in the arse. Because the answer is “I sit on my arse drinking coffee and crocheting. Or sleeping.”, and what kind of answer is that. At least, that sentiment is what goes through my head. I know my answer is perfectly valid, and yet it leaves me feeling lacking. That’s purely an internalized issue. My perfectionist soul never planned to be unable to manage my housework, and so not having an occupation to report in answer to any questioning is felt like a personal shame. I’m getting better at it. I used to bluster and come out with justifications and explanations, whereas now I manage to smile back and say, “Oh I’m long term sick”, without too much internal squirmimg, steeling myself for the “aww”, “ahh” and “ohh”s that follow such statements.

The fact is that, although improving, society is not conformatable with disability, so being informed it is “all” someone “does”, some people just can’t process. People are fine with people like Paraolypians because they “do” something apart from being disabled. I’m lucky to be surrounded by people who love and value me for who I am, inclusive of my disabilities. But when meeting new people, you never know what card you’ll draw.

At the moment I’m dealing with an issue to my dominant arm, which is preventing me crocheting. That needed bold letters naturally. I managed a bit of crochet the other day only for it to ger worse, and have now been told to rest it completely. I feel at a loss! It’s awful. I’m sat just twiddling my thumbs. As well as being physically put out, mentally I am all wobbly. Crochet isn’t just my hobby; at times it feels like all I achieve. Whether this is healthy or logical, I’m unsure, but feelings aren’t always thus. Far better to accept a feeling than fight it, anyway. So without my crochet hook in hand, I don’t know quite what to do with myself.

Crafting is such a major part of my identity, that to be restricted feels almost worse than being limited with leaving the house. Because of course my same arm is the steerimg arm fot my chair. Crochet is as natural to me as breathing, and seeing as they are not.sure why this issue is happening with my arm, orr when it will go down, I feel scared. I know there is more to me than my crafting, whether it is someone else asking, or I am examining myself, and yet to be without it for however long it takes is a cruel punishment.

That said, it does mean I also can’t do the washing up. Silver linings.