Watching the world go by

Being disabled and ill in the ways that I am, I feel, very often, that I’m watching life happen rather than experiencing it. Now everyone likes a bit of people watching (and if you read that and claimed otherwise, liar liar pants on fire) but when that’s your life scrolling past you, strolling past the window, with all of the things you wanted to do and experience and see and taste and enjoy and hate… It’s hard to switch to.

You change the way you are going through life. You find the way you speak has changed. It goes from being “oh that’s something I really want to do”, and instead it becomes “that’s something I always wanted to do”. The past tense slips in, almost without you noticing. And it’s not even a miserable thing, it’s a reality thing.

Before I became ill, one of my aims was always a dream trip to Egypt, where I would go into all the tombs, walk around the pyramids, sail down the Nile, probably end up on a camel at some point (we’ll ignore the fact that they have NO connection to ancient times, there are some exceptions you have to make as a tourist), spend hours (days) in the museum, and lose myself completely in the wonder and amazement. This happening, at some point in my life, even if it took me 30 to save for, was a fact. It would happen. There was no question about it.

Now I know full well that it won’t. I will never do that. Any of it.

So I make do with my books when I can read them, following people online who are doing all of those things (maybe minus the camels, I think there is a novelty factor there and you don’t repeat it), I watch all the documentaries repeatedly to the point I know them word for word. I also – confession time – read all the historical fiction I can get my hands on. Yes I do. To the point where I can almost feel the heat on the back of my neck, can touch the sand, can feel the tears on my face when these wonders come in to view.

You just change your view. Being ill, and staying ill, is an on going process, and so is the way you feel about it. And that is okay.

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You know you’re a spoonie when” – List

You know you’re a spoonie when:

  • You own more cushions, pillows and blankets than probably the rest of your street put together.
  • You also can’t help but come back from any shopping trip with at least one fluffy blanket or cushion.
  • Or fluffy socks. So. Many. Fluffy. Socks.
  • You plan leaving the house with more forethought than goes into a military operation.
  • You can recite exactly which cafes and restaurants are suitable for you from memory, whether it is dietary, accessibility, distance to the toilet or anything else.
  • And going to new places you have already found out in advance what is near that matches.
  • Dry shampoo. All the dry shampoo.
  • You know how to read test results, machines, operate equipment,  your relevant medications, better than the person who introduced you to those things.
  • You say words like “spoonie”, “brain fog” and “fatigue! in every day conversation.
  • You might not have remembered to put pants on this morning (reader, I remembered, round of applause please) but you can recite your meds doses and times as needed.
  • You have before held the internal debate between the nutritional benefits of eating vs the symptoms it was cause.
  • You can go for days, sometimes weeks, at a time with interacting with no one besides your doctor.
  • Most of your friends live online.
  • You can disguise how awful you’re feeling. And you do. A lot.
  • You can take strong pain killers as if they were smarties, and look shocked when people are affected by them. Or it’s the other way around. No in between!
  • The majority of your money goes on things that make you life functionally easier, whether that’s audiobooks because you can’t manage to read any more, or more cushions (see point one…) because other bits need supporting, or taxis because you can’t walk. All your money goes on being ill. Bitter? Me? Nah.
  • Bras are highly over rated.
  • So is clothing in general – I’d say “count how many pairs of pajamas you own as a spoonie” but last time I did, I got frightened.
  • You don’t know what you would do without the emotionally support of the people close to you, either physically or in cyber space. Your clan. The ones who keey you going.
  • You have lost many friends through being ill, so those you have are especially dear to you. Though you still hold a secret fear of losing them.
  • You have watched a lot of random documentaries in the middle of the night when awake at ridiculous times.
  • You don’t understand why children fight naps. Naps are a wonderful thing.

Of course this isn’t a complete list, but just a few things…. Anything to add? Let me know in the comments!

“Are you sure you’re not just depressed?” and other unhelpful things to say 

Oh I know, it must be almost irreaitable when you hear someone moaning on about how crap things are, but if these words ever cross your mind when it comes to dealing with someone with a chronic condition – just don’t. 

Obviously it’s a disservice to one the individual is struggling with – and we’ll rant about that momentarily – but there is no such thing as “just depression” and referring to it in such terms is a hideous thing to do. Depression is an evil creature, a killer, and something that does often go hand in hand with chronic pain. 

Now – to business. 

Yes, being depressed makes you more receptive to pain signals, but equally being in pain constantly makes you depressed quite easily, so where that cycle starts and ends is a mystery. To blame or reduce pain down to and on depression is, at best, misintentioned, and at worst, simply cruel. 

There are a long list of things Spoonies are used to hearing, but for me personally this is one of the most nerve pricking. Because I do have depression, and I do have pain, but for fucks sake, do me the courtesy of respecting I can probably tell the difference. 

This is my body and my health. I have lived with these symptoms for a very long time now, and yes, I am completely sure I’m not “just depressed”.

It’s also worth noting that the people saying these things also tend to have no idea of what depression actually consists of, and just think it makes you miserable, which puts even more of a sting in the tail of the comment, because effectively what those people mean is “stop whining”. 

Both depression and chronic pain need to be discussed more, and beyond that, what you must remember is sometimes there is nothing else to say except the pain. There’s nothing else on your mind, because the pain itself is so overwhelming, so all encompassing, it’s not a case of whining, but of simply having nothing else to say. It takes over, it destroys and floors you, and that is all there is. Pain, fatigue, fear, pain, tears and a bit more pain. 

So if you ever find that phrase on the edge of your lips…. Please. Just don’t say it. 

Learning to love the night…

One of the things about being chronically ill is that it doesn’t keep to a timetable. For example as I type these words it’s bloody twenty past three and I’m wide awake. Over the years I’ve become very in tune with my body, and can now tell when I will be able to get back to sleep, and when I should give up and stick the kettle one. Tonight is one of the latter.

For me this part of being chronically ill was very hard to adjust to. Confession: I am terrified of the dark. Absolutely terrified. To give you an example, I sleep with a lamp on, and my husband had to adjust to this fact when I met him, as it was just never going to change. I have a cheapy dimmer lamp with three levels, and keep it on the lowest one. If I go up to bed before him (which, being chronically tired, is quite frequent), I will stick the lamp on its lowest setting, and snuggle down. A little while ago, I did just this, and when my husband came up to bed, I was fast asleep (and, I am assured, snoring). Figuring it would be fine as I was already out for the count, he switched off the plug. I immediately started screaming and was wide awake. I’ve never seen him move so fast turning it back on. It then took a long time to calm me back down. All in all, he learned the hard way not to turn the light off even if I’m snoring.

So for that given as context, it’s a bit of an insight into how evening and nighttime is a difficult thing to adjust to being a large part of your life, when your awake / asleep clock goes out of sync, the aforementioned Painsomnia, needing extra pain killers in the night, or just suddenly being wide awake like tonight (although admittedly this might be pain, but my previous dose of strong pain killers are still in function, so I just don’t know it yet). Learning to be awake in the evening, and to move around in the dark, very frequently, was a long difficult journey in itself, and even now, I still light the house up “like Blackpool illuminations” as every parent everywhere would have said in the 90s.

Becoming used to spending time in the darkness is a difficult thing if you are totally petrified of it. Even to be sat here in the nighttime silence and dark and scariness, I have a light on, and the TV on in the background very low, so I don’t get too frightened. Having been ill for a decade now, I can just bout manage it, but it is still scary.

I’m sure to many an adult, like many of the other things I have described, this must seem weird and even laughable if you haven’t experienced it. But I’m writing this partially so I can send a cyber high five to any other spoonie going through that adjustment period, and also to any other adult who is scared of the dark. It’s rather mocked, even as a child, but hey, you have the empathy of this cripple.

The perks of being a cripple

Being disabled is crap, yes, I think that’s easily established, but what about the little joys that come from it?
Today I was on the bus in my chair, with my yarn, and a pattern to follow, and found the bar running alone the window was the perfect height to hold my notebook. Handy that my notebook was also stiff enough to hold itself upright <snort> and in place. 

Cafe workers will offer to clear a space for you – as they should morally, really, but it’s lovely all the same. Having drinks brought over to the table for you is also a massive plus. It’s good for me but also good for business as I will go back to the places that make my life easier. 

One of my closest friends will say she can’t possibly sit on a bar stool as I might be bringing my wheelchair when we meet for drinks. This has nothing to do with the possibility of me bringing my chair and everything to do with the fact she hates bar seats and prefers having a table. 

Having a roller ball cane is useful for when people are being arseholes, as I can focus on ankles and hit them. Sometimes, it really is worth the effort. (Most of the times I bang into people are complete accidents and due yo being VI…. Or are they? Hmm…)

Let’s not forget that being in a wheelchair means you’re guaranteed a seat wherever you go. And you can use your lap as a trolley. And you can sneak coffee in everywhere by hiding it behind your handbag. Possibly my favourite perk right there.

Life is crap sometimes with all this to deal with, and you have to find the little moments that make you laugh and smile. You have to find the things to keep you going. It would be so easy to give up with everything being as overwhelming as it is, and when I’m in a dark place, it’s these little moments of laughter that get me through the darkness. 

Am looking forward to being well enough to go for drinks again, to see what we refuse because there’s a cripple amongst us again. 

Crafting goals – making progress and the never ending crochet tube

Do you ever remember being made to do goal setting at school? I do, and the thought of it still makes me want to grit my teeth. I hated doing it. I was always worried I wouldn’t manage to achieve the goal, that I’d look like a fool, and let people down. Spot the insecurity complex a mile off, can’t you?

In my adult life I am trying to locate a love for in, along with lists and generally organizing my backside. Setting goals through my craft is one way I’m trying to get rid of those traumatized child memories and see they it can actually be useful.

This year the big crafting goal is making myself a jumper. I’ve found a few patterns that don’t terrify me too much, and feel like that they might actually be possible. I decided that I should try something similar but not so overwhelming as a step towards this, and so started work on a poncho. It’s a pattern I’ve been thinking about for a while, and wanting to try, but have hesitated for several reasons. I bit the bullet however, and so started work on a rolled neck poncho.

I started off very enthusiastically about this. However, as it turns out, the beautiful effect of a rolled neck means making The Never Ending Tube. The Never Ending Tube goes on forever and ever and makes you question why you ever wanted to crochet anything, let along The Never Ending Tube. Also it should be mentioned that the bugger appears to keep shrinking each time you measure it. It needed to be 13 inches. But I swear down that last inch was about a mile long.

Also, every teenage boy everywhere would be horrified to find out what 13 inches actually looks like.

I managed to make it past the wall of The Never Ending Tube, and began the expansions. This, I have found, actually starts to feel logical, once a few rounds have been done, along with a notepad and pen to keep note. It’s also encouraged me to think that possibly the jumper will be done this year.

Although it will NOT have a roller neck.

A bit of a ramble…

I don’t have anything specific to say today. Because my brain is so foggy I can’t think straight. It’s a weird sensation to live with, you head being full of cotton wool and random words rather than logic. Looking at something and not remembering what it is. Being somewhere and not remembering quite how you got there or why.

Sometimes it’s scary. Sometimes, I feel too full of cotton wool to be scared. But when you think about it afterwards it’s overwhelming. 

I’m having a moment of feeling so totally incredibly overwhelmed by my illnesses at present. Being unable to rely on any part of your body, knowing it is untrustworthy and will betray you whenever it feels like it is a scary thought to be strolling around with. 

And that’s one of the things people often fail to understand. Hesitating about making plains because you know your joints could give way. Backing out of arrangements because you know that one more push of energy will cause a flare. Knowing you can’t function likr a healthy person because you need to spend two days laying supported by cushions and blankets to recover from a trip to the supermarket. 

It sounds so ridiculous doesn’t it? That some bodies have been built purely to fail their owners. 

I’m so very tired of the pain and the fatigue and the unpredictability and all the crap that goes with it. 

I need a break from my own body. 

The anticipation of an important appointment.

Bloody hell that’s not easy to say, is it? Go on, say it five times fast. I’ll know which of you have tried….

Anyway. I have a very important medical appointment tomorrow and I have reached the stage of preparation where I am starting to panic. I’ve got everything ready. I’ve written a few lists, and I’ve sorted what I need to take with me, have even prepacked my handbag so I don’t have to stress in the morning (it’s an early one, feel my pain). So now the stress has kicked in.

Thing is, I need this appointment to go well. I need something to come out of it. I need it to be a productive, successful, wonderful meeting. And there’s never any assurance that it will. Especially not when you’re chronically ill, when it’s a new team, and when it’s first thing in the morning. See where the stress is coming from now?

As I’ve mentioned my health recently has radically gone downhill. No one so far seems to know why, and aside from a minor drop in my vitamin D, all things have come back clear. Which, when you are in agony, is a horribly weird thing, as obviously there is the relief that nothing serious is showing up, but leaves you with the “well what the hell is going on then?” thought, which in itself is full of anxiety, stress, worry and downright terror, when you’ve gone through years of chronic health, and then have a massive change.

When I first became ill I was bedbound, and there is always a background worry whenever I have a flare of symptoms that I will end up back like that. What normally happens with a flare, is that within a few days, maybe a few weeks if really bad, I’m back to my level of normal, and I roll my eyes at my earlier panicking. This cycle of course repeats itself on a regular basis. But that’s fine, because it’s the Normal Cycle Of Things.

My recent deterioration has not stuck to this cycle, and so the stress levels are beyond the levels I can describe. Working on the doses of painkillers I’m on, and still being in this amount of pain, having all of our lives damaged, by something that doesn’t stick to Normal Cycle Of Things, is terrifying. The possibility that this change might be permanent will not leave my mind, and my day to day observations of myself are doing nothing to help that.

Sadly – ironically – my normal coping mechanism of crafting the hell out of any and every available yarn to deal with panic is being prevented by the very thing I’m preventing about. I’m still managing a little, but nowhere near as much as I would like, and need. Today has mostly been about being snuggled with cushions and blankets and joint supports, resting as much as possible. Lots of that brainless scrolling through facebook and online shopping browsing that involves very little physical or mental energy.

But nothing is taking away my terror of coming out of tomorrows appointment with no way forward, and no possibility of change. This a situation spoonies find themselves in regularly and and I know that anyone with a chronic health condition who reads this will understand. I cannot comprehend life staying how it is at the moment, as it simply is not really living. It is a barely functional existence. I’ve got through a period of health like this before, and I honestly do not know how to manage the possibility of it not changing soon.

Completed project! – Pale rainbow star blanket

This blanket has taken me a fair while to finish because with my health being so bad right now, I’ve only been able to work on it in small bursts. It’s always quite heavy working on a blanket, which at times is really therapeutic – like having your own weighted blanket that grows as you go! – or at other times is too much for my body to take because my skin is super sensitive to textures, temperatures and weight. 

So whilst I’ve been so ill I’ve been mainly working on smaller, light weight projects, such as the scarf I showed a few posts back. But I decided this afternoon to finish it, as there was half a row to go and goddammit I’m stubborn. 

So here’s the finished blanket. It’s in Aran yarn (which I find easier to work with being VI) with a 5mm hook, and is a really super duper fancy yarn from…. Pound Stretchers. Yes seriously. Whilst I love hand dyed yarn (which my bank balance will attest to), I make a lot of blankets for charity, and so knowing good acrylic yarns is a must. This has finished really nicely. LitteCrafter will be blocking it for me later – I have begun teaching early – and then it will be going off to do some good.

Tada! 

The therapy of crafting

Crafting, of any form, is the most fantastic therapy. It helps focus your mind, calm it down when it is spinning around, teaches you to pace yourself, is something to get ‘right’ when everything else seems ‘wrong’, soothes you when you’re in pain, gives you something positive when things might seem bleak. Craft is the best therapist you can access from anywhere.

Several years ago a friend promised to teach me how to knit when I got out of hospital. And indeed she did. She knocked on my door, she had a bag full of yarn and needles. We drank tea whilst she taught me (largely doing it herself, it must be said, for I was rather hopeless at first) how to cast on, and got me going, just with knit stitch, forwards and backwards, on that knitters typical first project – a never ending scarf. It was a scarf for LittleCrafter, and although it is now too small, I have kept it, because it was the very first thing I ever made – at least correctly and that had a use.

From there, I taught myself some more when it came to knitting, and then taught myself to crochet. A friend had tried to teach me once before but it had been like a foreign language. It is really. I might now read “HDC 2Tog BLO” and know what it means, but that’s just a whole jumble of letters if you are not used to it. But having made some sense of knitting, at least on a basic level, I didn’t feel so intimidated by the language of crochet, nor was I quite so scared of interacting with yarn. And so, with a book, a crochet hook, some yarn and a YouTube tutorial, with lots of pausing and shouting “WHAT DOES THAT EVEN MEAN” inside my head, I began to make sense of crochet. It took a fair while to make full sense of it, and for a long while I didn’t go beyond granny squares, and even now it’s still one of the most relaxing patterns to fall back on. 

I love learning new techniques and trying new patterns, but you do find a selection of patterns you can do without (much) referring back. I have a favourite beret, chunky hat, baby blanket, large size blanket and – now – scarf pattern. All of which I could start off today without needing to more than glance at the pattern become they have become second nature.

Maybe that shows I only stick to easy patterns, but there is something to be said for comfort patterns. The ability to lose yourself in the beautiful balance between brain engagement and switching off, all whilst making something come out of it, is delightful. Even having been a crocheter for several years now, even the idea of crocheting is both relaxing and exciting all at once. 

I finished my WIP today and I now have the difficult decision between which project I should pay a little bit of attention to until I get bored and start making something else. Though more seriously I always have a “take around” project that goes in the back of my wheelchair, which is always some kind of simple pattern so I don’t have to carry around much information to go with it.

I’m planning on working on a poncho next although I will almost certainly also start another scarf as a carry around project. I also have two blankets on the go, and my all reliable squares for when I need them. 

Crafting has kept me going during many dark periods in my life, and now during this period of everything having hit the fan with my health, crafting therapy is wonderfully sanity saving. 

Here’s to yarn.