To Fear.

I was thinking about compassion this morning, and loving-kindness, both valuable things to be thinking about and important parts of Buddhism and Buddhist thought, and my mind turned inward for a while. I began thinking of my illnesses and my pain. And my fear.

To be clear, the fear that I mean at the moment is not the one that arises in relation to financial woes, or housing difficulties. The fear that I am thinking of is the one that rises within me whenever pain and discomfort reach a certain level, or have been constant for some time. This fear also arrives pretty promptly when certain kinds of pain arrive - particularly to do with stomach/gut pain and the pain associated with urinary tract infections and interstitial cystitis.

This fear sweeps in like a wave, and it's hard to see it coming sometimes. It's just suddenly there. It says things like 'how long is this going to last?', 'is this something new?', 'is my body doing serious damage to itself?', 'what if I need to go to the hospital this time! what if I need more tests?'. And then, quietly, shatteringly, 'what if I'm dying?'.

Death isn't something that is new to me. Part of dabbling ('studying occasionally' may be the better term) in Buddhism means that I am no stranger to meditating on death - my own, and others'. With all my health issues and some operations under my belt, too, I have thought about my own death before. Not in a way that could be construed as suicidal ideation, though I have been there and know how to recognise when that is happening, but in a way of acknowledging that death is a part of life. But what I want to talk about is the fear that arises with these thoughts, when I am in pain or feel as if I am going to pass out.

I know that this pain is actually just trying to protect me. It's that 'fight-or-flight' response. And the fact that, whilst I've been diagnosed with a few different things, doctors still don't really know what is wrong with me and why I have such bad turns with my stomach and digestive system - no doctor has ever witnessed one of them, either, and even after all these years of having these 'bad turns', I still find it hard to pinpoint where the pain is coming from. I'm usually just trying to avoid passing out and reminding myself to breathe. The fear flows strongly during these times, and I know that if I get swept away by a wave - as I often did when I was younger and didn't have the strength of mind to withstand it - the pain will feel so much worse, I will feel terrified, and I will panic. Panicking just doesn't help in these episodes, unfortunately - I should know, as I've tried it. 

So, this morning I just want to send a little loving-kindness and compassion to my fear. It's trying to protect me - trying to get me to run away from the pain and discomfort, trying to get me to find someone who could take away the pain (not sure such a person exists, but I guess anything is possible), trying to remind me that even I don't know what is going on in my own body. All of this is a (misguided) attempt to help me during what is really a small crisis happening inside of me. I appreciate it. But I'm going to keep working on my breathing, my management of stress, and observing my thoughts, so that I can keep moving forward and not getting tugged down into sheer panic.

I prefer being able to breathe.



Love to all who read.

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Spoonie Musings || Getting to Know Myself

Hello friends,

I wanted to come on here and just write out something that has been kind of hovering around in my mind lately. I'm not really sure what to call it at this point, because it's kind of a collection of things that come together to make sense for me but perhaps not to others. And I'm still easing my way into it, too.

I want to talk about allowing ourselves to be who we are. I spend a lot of time confused about who that person actually is, and my running theory as to why that is so fuzzy for me is that chronic illness has kind of muddied the waters in terms of clear-seeing and clarity of self. I think that the person I used to be before I got sick - the incredibly active kid who was a little bossy, and wanted to do almost everything with her friends - somehow still exists in part, and she can be incredibly argumentative with who I am now, and who my body (or my illness) require me to be.

I'm not sure that makes much sense, but please bear with me.

Sometimes I will be invited to an event, to do something, to catch up with others. And sometimes my reaction to that is 'yes, absolutely! I can't wait! I hope my body is okay with this on the day :)', and then sometimes my reaction is 'well that sounds absolutely wonderful, but I am feeling less than enthused at the moment, huh that's weird, anyway sure!'. (For simplicity's sake I am leaving out the times when it is just a straight-up 'no', as that isn't what we're discussing today. But those do happen.) 

The first reaction is perfectly sensible to me - there's very little complexity about it. I want to go, I hope my physical and mental health will be okay for it, I put it in my calendar and look forward to it. Sure, makes sense. No worries.

The latter reaction, however, is where things get a bit complex. The people-pleasing, active, 'should' part of myself just pops up and indicates to me that I 'have' to go, that I wanted it before otherwise I wouldn't have said yes, that maybe I am just letting my anxiety make the decision for me (has happened before, which muddies things even further), that I 'used' to do this stuff all the time so I can manage at least this once. This leads me to start feeling even more anxious about the upcoming event, which slowly builds as the day gets closer. I start having these conversations in my head, which seem to be between my old self (who is a bit warped these days, I will say) and my sick self (or a personification of my illnesses into one sentient being), and these 'conversations' quickly devolve into the former self spouting a lot of 'shoulds', and the latter self just digging in their heels and lying down on the floor like a petulant child who just wants a cookie. It's a toxic environment inside my head sometimes.

I have realised in the last few months that I have another self that is getting a little more assertive, and I have a feeling it's a new self that I am stepping into more and more. This self listens to her intuition a lot more and if she has a reaction to possible plans, she doesn't really listen to either old self or sick self that much, she just cancels or modifies the plans to what feels right. She's not interested in making herself smaller or doing things just to please others, and yet she's still incredibly loving and cares for those in her life fiercely, because - guess what! - she actually takes the time to look after herself so she has more to give.

I have spent pretty much the entirety of Summer feeling pretty rotten. I have had to admit to myself that I am sicker just in general - it may not be a phase, as I first thought, but actually just a slow but steady decline in my health. Almost all of my conditions are worse, and it was shocking for me to surface from brain fog about a week ago and realise just how far I had sunk. But, oddly, I am not feeling panicked about this realisation. I never really know what is going to happen next. I don't think anyone does. I may get better, I may get worse, I may hover around this level of illness for the rest of my life. I am just interested in enjoying my life as much as I can, and sometimes that actually means saying no to things that I would normally love doing. And that actually feels pretty freeing.

Love to all who read.

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Spoonie Musings // No Sleep and Holidays

Here I am, sitting down to type. Just sending a little note out into the void. Hello, void! It's nice to see you again. Though perhaps it is difficult to actually see the void, given that it isn't a specific entity, nor does it have form... We could get pretty deep here, so I am just going to move on.

Last night I had basically... two hours sleep. For those of you reading who are fellow spoonies, you will most likely empathise, but also know that such an occurrence is not exactly rare. It happens. For whatever reason. I have tried to explain it to my husband before, with mixed results. Sometimes there is an obvious thing happening within my body that prevents me from sleeping - a flare up of one illness or another, perhaps a migraine. Other times it is more that my mental health is suffering, and sleep just... can't happen. Usually this is due to a rapid rise in anxiety, making sleep a (forgive the pun) distant dream.

And then there are times when I just feel too sick and tired to sleep. It's these times that are difficult to explain to others, as I have difficulty understanding them myself. They just kind of are. I can hear my pulse beating throughout my body - sometimes I can even see it as it shakes my skin (tmi? apologies.). Everything just feels off, and I can't even think of sleeping because what would be the point in trying? I would just lay awake for hours feeling sick, in the dark, most likely listening to my husband sleep blissfully next to me.

Anyway, I just couldn't get to sleep last night. It was a mix of reasons, but I think mostly anxiety. The holiday season is coming and I find myself slipping down the rabbit hole that suddenly engulfed me towards the end of last year - a mix of overwhelm, exhaustion, 'sicker-than-usual', and depression/anxiety. It's a toxic cocktail that I would rather than drink, but somehow can't seem to stop, like it's already in my blood. I find myself having trouble remembering how to do the things I like to do (barring reading, thank GOODNESS that's still happening), and having to desperately try to remember normality (my version of normality) so I can get on with my day. Everything is just starting to feel that little bit too difficult.

I'm not going to say that I don't have good days - I definitely do, I'm just very aware of the holidays coming and of my pretty much never-increasing energy levels. I have very few effs left to give about a lot of things at the moment, but I am fighting to restore them. I can't really tell sometimes why I am fighting - perhaps I just need a holiday from the holidays? XD

Not sure how to finish this one, but I'm going to send lots of love and sparkles out to anyone else experiencing this end of year slump and overwhelm. It's rough. Look after yourself.

Love to all who read.

1 comment musings, spoonie diaries, thoughts

Spoonie Musings // Guilt and Relationships

Many of you know that I am married and have been with my partner Xin for almost eleven years now (married for almost three). We got together towards the end of our high school years, which meant that Xin has been there for a lot of my spoonie diagnoses, tests, and operations. He is a wonderful partner, a wonderful person in general, and I love him deeply.

And yet, being chronically ill in a relationship is seriously hard sometimes.

I can't work - at least, not in the typical 9 to 5 way, and not really shift-work either (I can do some editing and writing work online but it depends how I am travelling at that point in time - ie. am I having any random flares at the moment?) - so making money is pretty much all up to Xin. He supports me financially, as well as our cat, Peppermint. Money is rough for any spoonie - shelling out the bucks for medications, treatments, surgeries, health insurance (if you're lucky enough to have it), all of it means you are paying some big moolah. I have a very specific diet that I have to follow if I want to remain even slightly healthy, and sometimes that can add up, too. Financials are stressful for any relationship, and then for spoonie relationships it is a whole new thing.

Going on dates is a somewhat difficult topic, too. Some days I can totally manage it - absolutely no worries, having a pretty good day, minimal pain or discomfort, and I can walk unaided. Score! And my stomach is okay with me having tea that day! Double score!
Then there are days when I need assistance - pain levels may be higher, discomfort present, I can't do certain things like see movies because I have a migraine on the way, or I need to make sure that I won't need to walk up loads of stairs or I have access to a cane to assist me. Toilets need to be present - alwayyyys. Just in case. Better safe than sorry. All those random cliche things.

And then... there are days when we have planned for a date and I wake up that day just feeling rubbish. Too sick to get up, heart working way too hard, standing or walking are pretty much off the table. How do you have a decent date when you can barely manage a conversation?

Guilt can rush in really quickly in times like this. And the 'if onlys'. "If only I could work a little bit, or do this thing, or that other thing, then I could make more money and there would be less stress and strain on my partner to bring home money." "I wonder what ways there are for me to make money from home (does the thing and slowly gets burnt out completely and can't even do the dishes anymore)"
"If I hadn't of >insert item eaten, activity done, thought considered here< then I would be able to go on that date today! Dammit." "I wonder if my partner minds that I can't go on dates often - it must be so hard for them, etc. etc. >making assumptions and vastly blowing everything out of proportion without actually asking partner anything<"

You can see how it can kind of get out of control.

Do I have any recommendations here? Honestly, like many spoonie conditions, I don't think there is a solve-all pill here. There is no instant cure or 'if you just remember this one step everything will be fine!' amazing result. No, this is always going to be hard - it always has been, in my experience. But I have a couple of things that I would like to suggest (and have written down so I can refer to it myself, because yeesh I forget this stuff so often):

1. Communicate communicate communicate. You need to stop making assumptions about how your partner is feeling and actually talk to them. Seriously, I know this is really scary sometimes - what if all your worst fears are true? Well, what if? Your partner will most likely want to work through them, too, and you will grow even closer to them in the process. Bottom line: nothing is going to get any better if you're not on the same page.
2. Compassion is a necessity. Towards your partner, towards yourself. Towards the person who is taking a superrrr long time to get out of the bathroom. I know it sucks, and it hurts, and everything feels really gross and hard, but if you can show people a little compassion - including yourself - sometimes that can make things easier. Remember - your illness or condition is already difficult enough to deal with. Don't compound that and make it doubly hard by punishing yourself in your mind.
3. Take three deep breaths. Even just this little routine can give you a little distance from the issue and stop you from spiralling down into nothingness. Take three deep breaths, think through whether you've been down this guilt-trip before, think about whether it is helping. Repeat until things feel less awful.

I just wanted to write this for anyone else struggling with this sort of guilt - I am getting better at recognising when it comes by, but I'm still not great. It's all a process, I guess!!

Love to all who read.

1 comment mental health, musings, rambling, spoonie diaries, thoughts

Where I've Been?

Oh hello there, dear reader. If you are still out there. *peers into the darkness* ah yes, there you are, I see your little light in the distance! I promise I am still here!

Honestly though, it has been about a month of trying to keep my head above water and barely realising that I was slipping under with regularity. Around the first week of July, my husband brought home a gift from his office - a fairly aggressive flu virus that laid us both low - him for at least a week, me for a week, maybe two, as it was hard to tell the difference between flu symptoms and just regular ole' Chronic Fatigue and such symptoms. I never really recovered all that well, but I did have a day here and there where I was able to push through things and get things like grocery-shopping and such done, but attending to my blog was pretty much pushed to the bottom of the list.

Then I had about two weeks of pretty near-constant migraine symptoms, with at least six full-blown migraines. And more recently I have caught a virus that has required me to go back on antibiotics.

So yeh, writing it down like that, it's been a bit of a rough month. My mental health has been mostly okay, though I have noticed that my self-esteem has been taking a bit of a hit, and my anxiety is a little high of late, too. I am working on resting as a preventative measure, rather than just doing it when I crash and burn, but that is a work-in-progress. Today is the first day that I have felt capable and awake enough to do some blogging in some time, and I am also getting a few work jobs done, as well as a few chores. I may already be overdoing it...

My reading, you ask? Ah, how kind of you to show interest, dear reader. Yes, I have been reading. There was a period there of about a week or two where I could barely read at all, and that was frustrating, but I have made up for it by apparently almost exclusively reading wonderful books when I could read. Expect a bunch of reviews and reading wrap-ups for June and July to be flowing towards you soon. I also have an exciting collab with one of my favourite book bloggers and dear friends coming soon, and a blog tour, too. So, fun things in the offing.

Work is still going well regardless of health stuff. I've wished for more energy to work on stuff, but have still been doing good work when I can. I am still so happy and grateful to be able to be paid for writing and editing work - it is basically a dream come true for me. Now to work on getting my own fiction writing published!

I hope you are all well, and that you are ready for the barrage of book reviews coming your way!

Love to all who read.

P.S. My husband found pictures from this artist recently and they are really helping me out. I think more peeps need to check out their work.

The Latest Kate Patreon

The Latest Kate on RedBubble

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Spoonie Musings // More Thoughts on Sleep

Ah yes, my sleeping patterns woes continue. I thought I was doing better, but my body seems to want me to stay up late and the sleep long into the day, but then it also gives me lots of symptoms for doing that... and lots of symptoms if I don't... Are you confused yet? I sure am.

Life as a spoonie is really weird sometimes. Okay, maybe all the time. Even when things are going well, it is a little weird because of dietary restrictions ('so you can have... what can you have?' 'things that aren't trying to kill me?'), physical activity or movement restrictions ('I'm going to go do this kind of physical fun thing! Want to join me?' 'Uh I can't, I have this thing...' 'What thing?' 'Chronic Fatigue Syndrome.'), and/or other things like... mental health stuff that is going on at the most frustrating possible moment ('I was going to go out and go for a walk, and maybe sit in a park for a while, but then I didn't.' 'Oh. Why not?' 'I remembered that I can't handle even the slightest hint of human interaction outside of my home right now...').

Spoonie issues come in all forms, and most of them are kind of strange in one way or another. I can take enough of a step back from my life to acknowledge that. Even now, as I write this, I can feel my stomach beginning to hurt, despite the fact that I haven't really eaten anything in about two hours, and certainly not something that was cause pain. And I think that is the most frustrating thing about being a spoonie for me: the not knowing. 

And that might be the most frustrating thing when it comes to my bizarre sleeping pattern right now: I have no idea whether I should just honour what my body is saying it wants and stay up, or trying and go to sleep at a 'normal' time to try and reset my body clock. Honestly, I have tried both in the last few weeks, to mixed results. I'd be the first person to admit that sometimes, whether it be because you haven't had enough time to yourself, or your brain is just not slowing down, or various other reasons, you just really need to stay up later than you usually would to reconnect to yourself, or read a book, or play a game, or, dammit, watch that show you've been meaning to get around to for months. Sometimes it just has to happen.

Other times, you need to work on your sleeping habits. Limiting screen use before bed, having a nice warm bath, or a glass of milk, or whatever normally works for you. Going to bed at a reasonable time and trying to get up with your alarm for once, instead of about twenty minutes (to an hour...) afterwards.

But I just don't know what realm I am in at the moment. It's certainly a grey area. It's neither the white light of early morning, or the pitch black of the night owl's lair, but just a grey in-between where sleep is a bizarre creature that I cannot tame. Maybe I should stop trying? (ie. just sleep during the day hahahahaha *manic laughter ensues*)

Love to all who read.


P.S. I have recently stumbled across the work of Charlie Bowater, and I really wanted to share some of her work here. Please visit the links underneath the image to check out her website, deviantart and society6 pages!

Charlie Bowater Website

deviantart
society6

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Spoonie Musings // What even IS 'pain-free'?

Hello! And a special shout-out to all my fellow chronic pain friends. As of the last couple of weeks, my pain levels have been worse every day than they used to be. What I mean by that is... I experience pain everyday with my conditions, but usually not all day every day. The last couple of weeks, though, have had me experiencing pain of a higher level than usual all day every day. And every night.

And yes, I am noticing how it affects me.

Sleep has never been that refreshing for me, even when I sleep a total of ten to twelve hours a day (including whatever I managed overnight, naps, sleeping in...). But lately, it's even less refreshing. And it takes me hours to fall asleep. So sleep is kind of a tense subject in my mind at the moment.

And I'm snappy. Grumpy. Pain wears you down and hollows you out. You find you have less patience overall for things like... ants invading your kitchen (yes, this is happening at the moment, and YES it is driving me up the wall). I find I have to work extra hard not to snap at people, or swear at the television when someone I don't like is on it (for example, a few people know that I watch Running Man (a Korean variety tv show) and adore it, but there is one particular person who is on there that just rubs me the wrong way. Lately I am find it very hard not to call said person not-very-nice-names...).

Finally, my everyday life is kind of...dimmed. I can't focus on things very well (hence this really choppy and strange blog post), so working on my writing and such things are basically out of the question at the moment. Even reading is quite hard, I just force myself to do it anyway. I'm exhausted all the time, so spending time with my husband is often in the form of me sitting nearby and reading while he games - which is totally great, but I kind of wish I was slightly more aware so we could game together, or play a boardgame... 

Anyway. That's just a little update about how I'm going, and about how chronic pain is impacting me and my life. Despite things being pretty rough at the moment, I am still okay with how I'm handling things overall, and I do note that my experience of pain may be completely different from someone else's. But I think sharing this kind of thing is important, so that we spoonies remember that, even with these isolating conditions, we are not alone in our experiences.

Love to all who read.

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Spoonie Musings // Finding a New Pace Every Day

Oh well hi there. Here we are again! I have to admit that getting my thoughts out via these blog posts is really helping me lately, so I'm going to keep doing them for as long as that's true.

Right now, I am sitting in my reading chair, sweet handmade patchwork quilt on my lap (made by my friend Emily a few years ago - and extremely loved by me), kitty nearby snoozing, a hot drink cooling gently, and dark chocolate covered cherries for snacking (they are seriously addictive, but I need to watch how many I eat because caffeine). It's a pretty sweet setup, honestly. 

And I am enjoying it, and so grateful for it, but that only really kicked in after I realised that my symptoms probably aren't going to ease anytime soon, so I may as well enjoy the good parts of my day instead of focusing on pain and discomfort. It's still going to be there, and I will do my best to ease it, but I'm not going to rest my enjoyment of the day on whether or not the symptoms go away. Because that's one way to just not enjoy my day at all.

Today's pace has been all over the place. It started with me stumbling out of bed to feed the cat, letting my tea go cold as I tried to wake up, finally realising that I hadn't meditated yet (and then doing that), and then going out to the shops for some things Xin and I hadn't managed to get earlier in the week (plus these delicious cherries). And then getting home and realising that I was sill exhausted, still sick, and so had to cut down on the amount of things I was going to do today, including catching up with a friend I haven't seen in ages.

Ultimately, even after seventeen years of being sick, I still feel guilty when I have to cancel on a friend. It's a weird mix of: feeling sad that I can't see them, feeling a bit like a flake for cancelling so late, worrying that I have hurt their feelings in some way, and feeling frustrated with my illnesses for 'taking things away from me'. There's probably some other stuff in there somewhere, but those are the main ones.

The only way I have found to counteract this stuff, is to feel gratitude for what I am able to experience right now. Like, giving myself the gift of rest, cozy blankets, time with my cuddly cat. Books! (Will books ever be something that isn't at the top of my favourites list?) I also had to do some work today (editing), so I just tried to make that as comfortable as possible for myself (the cherries helped there, too. As did a lovely candle burning nearby.) It is occurring to me more lately that I can make things easier on myself, instead of just rigidly trying to push through everything, resenting it the whole way, and then collapsing afterwards.

Basically, I need to keep checking in with myself during the course of the day, and seeing if I need to ease some negative self-talk, or change the way I'm doing something so it's more comfortable for me. This is definitely a process, and I am going to be as kind to myself as possible while I work through it.

Love to all who read.

P.S. Here's a pic I took whilst as Araluen the other day with Xin. It was an absolutely gorgeous day, and I loved being there with him and walking amongst the beautiful plant life. Highly recommend some nature in your life if you have the energy!

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Spoonie Philosophy~

Ah comparison, how you have a tendency to ruin my life even when I don't realise you're there.

Sometimes I compare myself to "well" people, and then start acting like I am a non-spoonie, and that lasts... not long. If I am lucky (and often when I am operating on sheer optimism), it will last for a few days, up to a week. And then I will collapse into a pile of sick and exhausted and sad wibbly mess, wondering why I can't have the life I want, and why I can't sustain that level of energy forever.

Sometimes, when I am not running on sheer optimism, I compare myself to other spoonies. This looks like this: they have all these issues and yet they are doing this, that, and the other thing! I am not doing any of those things! I am so fail. And then I feel depressed and down on myself and actually confused, too.

Hey, Beth, here's a hint, because I know you're going to forget this again: you are not other people. There is actually no point comparing yourself to other people because you cannot understand their experience completely without actually living their lives as them. Stick to your own journey, your own experience, heck, your own present moment rather than trying to drift into someone else's, or planning the future when you are having a flare.

I think I will add an additional note here: people don't and can never fully understand your experience. They cannot confirm for you whether you are too sick for something, or 'well enough' for something else. Even your doctors don't completely know because they don't fully understand your conditions, even. So when someone says 'I'm sad you can't do this', it's not necessarily a statement saying 'you should be able to do this'.

Ah, overthinking things. another problematic thing that I do very often. But I am slowly learning.

Love to all who read.

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Experiments in Spoonie Science

So, I have been doing things. Lots of things. And one of those things which is the biggest thing happens a couple of times a week and is huge and draining but I love it, but also it is slowly draining me away (some days not so slowly).

[I am not sorry for being so vague. A thing happened to me which kind of shook my trust of a lot of people and so I reserve the right to be vague. It is not super necessary to my story to know what the thing is anyway.]

I have watched my energy drain away and witnessed myself turning back into a semi-moving almost-spoonless creature, and that brought up a lot of things for me. Things related to worth, and capability, and societal expectations.

And I watched myself beginning to crack under the weight of all of these burdens. I lost myself in those burdens.

And then a part of me remembered that hey. I've been here before. I've dealt with this shit before. How can I make space for where I am right now?

And so I got quiet. And listened.

It took a while, honestly. Longer than I thought it would. And there were distractions - things that needed to be done, before I could come back and resume the quiet. But eventually I got a few messages from within: Go simple. Slow down. Remember to breathe.

So I began to experiment. When I noticed myself rushing, I would deliberately slow things down. When I noticed I was trying to hold multiple conversations in my head, I would reduce to the one, the simplest, that I could address in that moment. I remembered my breath, and let it pull me back to the present, instead of reliving painful past, or planning for possible painful future.

I have started to get other messages lately, more specific ones about what I need. A lot of it is about self-love, self-care, and letting myself 'off the hook'. I have noticed my tendency to overthink things, and tried to pull back from imagining that I know what other people are thinking or expecting of me. Ultimately that doesn't matter.

I am doing the best I can. And, right now, that means going simple, slowing down, and remembering to breathe.

Love to all who read.

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