Regular Doses of Grief

This isn't a super cheery post for me, but I think it's something that needs to be written. As with a lot of my posts on chronic illness, I share this not just for myself (though it can be cathartic, it's sometimes just downright scary), but for others who might be going through something similar and think they are alone in it.

Today's topic is: Grief. 

I'm not actually talking about the grief that comes from losing someone, either to death or just distance/end of a relationship. I'm talking about the grief of losing the life that you cannot live because of your chronic illness/es, chronic pain, or other condition that changes the way you want your life to go.

Now, just quickly, a little proviso - I am really happy with my life and where I am. A lot of the time I feel content, and sometimes I feel excited about the little things that I have set up for myself in my life. I have done my best to work around my illnesses and sometimes worth with them so that I am living a life that still has some meaning, even when I can't do a lot of things I would like to.

That being said, I do find that about every six weeks to two months or so, I feel really sad, and sometimes really angry. I think I have written about this before, but not in the context of it being grief - I didn't know at the time that that was what I was going through. I just felt so angry and often that anger would then turn into tears and I would have to cry myself out until I was exhausted. Often then I would have a certain amount of time where I just felt low and ridiculously un-cheerful, until I felt capable of pulling myself back up and just enjoying life again. I didn't know where it was coming from, and it's only been in the past couple of years that I've realised: I'm grieving. I've started linking things together, and these 'doses of grief' often turn up after I am feeling a little frustrated with how little I feel that I can do, or I am sad that I have to acknowledge to myself yet again that I can't work or study or, sometimes, even read or write.

I've been feeling a little low and frustrated lately, and just realising over and over that I can't do some things that I really want to be able to do. I am feeling a bit stuck, and it doesn't help that this has been a bad pain week. I posted on Wednesday about self-care and how it helps, but at the time I honestly thought I was just feeling low because of my pain levels, not that this was one of my 'doses of grief', and those aren't so easy to snap out of. I'm sure some part of me just wishes that I could 'get over it' and move forward without this grief coming up so regularly, but the fact of the matter is that I need to have this. I need to be able to grieve sometimes for a life that I wanted to live, even whilst still being so grateful for the life that I have. I think past-me really couldn't believe that I could hold those two things at the same time, and so the length of my grief 'dose' would spiral out for much longer in the past because I was beating myself up for 'not appreciating the life I have'. I do, and I'm also still sad that I can't do some things that I had planned for myself, like: live in another country; have an 'actual' job so I could earn money; have more pets (Peppermint is probably an 'only cat household' kind of cat, but I can't help feeling like if I had more energy I would be able to introduce her to other friends and she would be happier (yeh, I've stopped beating myself up about this, but sometimes I still think about it); be more active on social media and get back to making videos, and make them even better; write a lot more!; be a better friend; get back to swimming, which I always loved and still do; study more! particularly languages....

The list goes on, but that's some of the things. Sometimes I beat myself up during these periods of grief for not getting more done and being more diligent about my writing or book reviewing for example, but I just try to remind myself that I am doing the best I can. I am doing the best I can. And that looks different to other people's 'best', even other spoonies' 'best'. And that's okay. Sometimes I even believe myself! ^^;

Anyway, I think these periods of grief will probably come up for me for the rest of my life (as I do believe that I will be sick for the rest of my life). Sometimes I will deal with them better than others. At the moment, this one is a little harder because of other difficulties in my life, and not feeling like I can talk to others about things that much. And that's okay. It just is what it is. I'll navigate as best I can, and maybe have a few crying sessions until I feel a little more able to take on the world again.

I hope that, if you have period of grief like this, you know that you're not alone. This sucks. I'm sorry. Let yourself grieve. And then, hopefully, come out the other side of your 'dose of grief' and find something to make yourself smile again, even if it's just a little cat meme.

Love to all who read.

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Spoonie Diaries: Thoughts from the Field

Hello! I am finally writing on my blog for the first time in 2018! A momentous occasion.

Okay, but seriously, I don't actually know why I haven't written in so long. Things have been a bit rough, and my depression has been around. I guess mostly my thoughts have been changing, and I have been considering starting a new blog and devoting more time to my YouTube channel (both of which I have not yet done, either), but I never intended to abandon this blog entirely. I guess it's just something that happened, and now here we are.

Anyway, something that has been on my mind of late is chronic illness - specifically my chronic illnesses - and how you can sometimes be doing everything right but they still react or get a bit worse. A term that I use often - and that I know a lot of other spoonies use - is 'flare'. 'I'm having a cfs flare', 'my fibro is flaring at the moment', 'I'm going through a pretty bad flare of everything right now'. It works well because people can then understand that it's a sudden increase in symptoms that will most likely then die down to a 'normal' or 'regular' level later on.

The thing is, sometimes these flares can feel like they come out of nowhere. I have started to understand the impact that the weather has on my health - heat, for example, is a trigger for my migraines, so I have to be really aware of that. If we are expecting a big storm, or the weather keeps changing from sunny to rainy/cloudy, the air pressure changes involved in that will often trigger a cfs and fibro flare, and I will have trouble moving around and just generally feel unable to get up from a horizontal position.

But, sometimes, the weather is absolutely fine. Not too hot, not too much wind or rain (sadly enough for me, because paradoxically, I love the rain, even though it causes my symptoms to get worse). And yet I am having bad symptoms and can hardly understand what my body is doing.

I had a realisation yesterday that maybe I should have understood years ago when I was finally diagnosed, but apparently I needed to take my time with this one. When I was finally diagnosed with Irritable Bowel Syndrome a few years ago, it made sense. It was frustrating, because that's really an umbrella diagnosis (that is, they are unable to pinpoint what is causing your pain/discomfort/issues, so they say it falls under the general symptom profile of IBS. CFS is the same.), but it made sense. And then, last year, when I discovered I was allergic to egg and gluten, I figured if I avoided those two things completely, I would be fine. Make sense so far? 

So, I have been avoiding egg and gluten for about a year now, and yes, my IBS has gotten better. But it hasn't gone away. I still sometimes get quite bad stomach pain, or discomfort, and my body's way of digesting things seems to be completely different from other people (ie. super duper SLOWLY). Yesterday, I was idly thinking about this as my stomach gently hurt, and then it hit me: Irritable Bowel Syndrome. It's right there in the name. My bowel is just easily irritated and inflamed - which then causes pain. It hit me that it may just be like that for the rest of my life. And weirdly, that kind of comforted me. 

It was like someone saying 'you're doing a great job at looking after yourself, it's just the tools you're working with are a little bit...wonky.' There can be so much guilt involved in having a chronic illness; particularly if it's invisible. Often spoonies are constantly asking themselves 'am I really sick enough to need this support item? they (whoever 'they' is) think I should work harder/go back to work/try harder to get better. am I trying hard enough? what if all of this is just psychosomatic? what if I am making all of this up as a way to get attention?'

To realise that I am actually doing the best I can (which is true, yes, silly brain lying to me) and my pain and discomfort is not actually a sign that I have failed again, but a sign that my bowel is just a grumpy so-and-so, is quite freeing. It doesn't make it much easier when the pain comes on, or I have to cancel another thing because I am too sick to go anywhere, or have my friends and family worried about me because I've had a wave of pain whilst out with them, but it does mean that I can move towards the cessation of self-blame.

Here's to 2018: the year when I stop letting other people make decisions for my body and start learning to understand it myself.

Love to all who read.

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Further Investigations in Cystitis

So, cystitis. I have written about this before, here, and have actually since then been officially diagnosed with interstitial cystitis, which I have mentioned in that linked post. Basically it means that my body often mimics the symptoms of cystitis without there actually being any infection present.

I have been put on a pill to try and relax my bladder and such, trying to reduce my symptoms, and it has actually been helping. But over the last week or so, I have been getting the symptoms with increasing frequency, and also with more pain than I have experienced since going on the drug. And that has been pretty tough for me to deal with.

I am trying very hard to dig more into what is bringing the symptoms on, but it hard given that a lot of my conditions tend to just get worse during stressful times, and I don't feel like there is much that I can combat that with that I haven't already (no, being told 'just worry less!' and 'try meditation!' has surprisingly not led to an instant fix!). What I have noticed is that two main emotions often come up around the time that I get the symptoms - anger, and sadness.

Both of them make sense to a certain extent - I am usually really upset that I have the cystitis again and that I am so uncomfortable. I am wondering if it has something to do with not expressing when things are getting too much, or I am feeling overwhelmed and not talking about it - because when cystitis hits I often realise just how much stuff I have been piling onto myself, and how much I have been shirking self-care.

I can't say that I am always capable of investigating when this comes up, or digging into the 'why' of it, but I want to keep trying in the hopes that I might start looking after myself even better than before, and maybe keep the cystitis symptoms from taking over again.

I also hope I will continue to share my thoughts on this most frustrating and embarrassing of conditions... Just in case someone out there might need the reassurance that it isn't just them.

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On letting go of plans.

Once again, hello there! This is me updating old posts so you can read them, because for some reason I kept starting posts in the past month but never getting them to the actual 'public view' stage.
The below post is slightly more recent, about a week old, and it was written over a day or so as there were many interruptions while I was writing it. I have also added in some additional stuff here and there to give you some more context and to try and make everything flow a little better.
This is all in the spirit of trying to be less of a perfectionist with my blog posts, because whenever I do that, things don't get published at all! And that means my blog just looks empty and abandoned, which is not nice.
Anyway, here is the post!:

Oh, I know I have written about this before. And I know I will probably continue to write about it for as long as I live - it is a difficult topic sometimes and it can be hard to remember at the crucial moment. But it is something that I always try to relearn (once I remember that is a thing).

What I'm talking about here is the need to let go of expectations and plans. This is something that comes up a lot for me, due to my health and also to my occasional tendency to stress out about study and things like that (I am always working on it, but sometimes it sneaks up on me...).

Lately I have been going back to my style of starting the day with 3 MITs (Most Important Tasks) and trying to get them done. For the most part, this works really well and I tend to get all three done and then some. Sometimes, I have to move one (or part of one if it is something bigger than usual) to the next day to get it done. No big deal, can do.
But then sometimes I get up with the best of intentions and find that, after an hour of trying to settle into the day, I am just not capable of getting anything done. This is a difficult thing to realise, as I feel like I am letting myself down by not completing things the way I had planned.

But then I remember - let go let go let go. I realise that in the grand scheme of things, if my body is demanding rest I ought to give it that opportunity. After all, I am kind of fond of this body and I don't want to let it fall in a heap. And I am liable to do that, on occasion.



I had to take a small hiatus while writing this, as I was then hit with some of the worst cystitis I have had. I could no longer focus. Talk about learning to let go!

I am back on antibiotics again, and I am finding that I just need to focus on breathing a lot more. I am making a bit of an effort to return to meditation, I suppose in a way to gain more control over what seems to be an uncontrollable situation, but also, conversely, to get better at letting go of control. As I have mentioned before, cystitis is something that completely messes me up, and I have trouble even thinking straight when it descends upon me. I am having to remind myself to relax and let go a lot more lately, which is simultaneously really difficult and annoying, and also kind of a good practice to get into.

Anyway, what are your thoughts on this? Do you feel like it is easy to let go of certain things but not others? Please chat with me in the comments.

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My timeline is not lining up.

Hi guys,
sorry for the lack of writing lately - it has been a hard month to be honest. I am still feeling quite cheerful, but I had a few times there where things just felt really wrong and I was having trouble keeping my head above water. Today I am dealing with a full-blown cold thing (mostly it's my throat that is hating on me, but that is totally okay because throat lozenges, tea, and medicated mouth wash are things that I can do!), and I just got my new mechanical keyboard (I can do a post on it later if you would like! just leave a comment below) so I thought I would go through some posts that I have started lately and just spruce them up a bit so you can read what has been happening!

Below is a post that I wrote about two weeks or so ago, and it was during a pretty bad time. It is a bit rambley, but those posts seem to still get a lot of interest as I am sharing my experience, so here you go!:

The last week has been a lesson in patience and pain. I started last week managing to do some exercise, and even do a scary thing where I had to go in to a place for a meeting-type-thing that I knew very little about. I started the week feeling strong and capable and did the things and didn't even chew gum during it.

And then the next day I woke up with cystitis, a bad CFS and fibromyalgia flare, and ohmygoodnessholyemotionsbatman. It was hard - and not just on me. It was hard for those around me, because I was sitting there, rocking backwards and forward trying to find a comfortable spot (such things often cease to exist when cystitis is around), and questioning out loud why this was happening. 'I was doing everything right!' I kept repeating. 'I just don't understand why this is happening...' often fell out of my mouth, too.

And the truth was, I had been doing everything right. I'd being drinking lots, drinking my special kidney tea, taking cranberry pills, doing all the right things. I had started doing a little more exercise (just walking mostly) and I was feeling better for it.

The only conclusion we could come to was that I had gotten more stressed about the scary thing than I thought, and my body had reacted. Strongly.

And it took a couple of days before I was able to convince my doctor that I needed antibiotics, so that meant I had about two and a half days of being in pain and discomfort, where I could barely read. I'm on antibiotics now, but everything is still ten times harder than it was before, and I am trying so hard to keep doing the things I need to (particularly study things) while my brain and my heart keep whispering to each other 'more rest would be best' and 'if this thing didn't have to be done, we would rest more'. These whispered conversations are constantly there, and I am having trouble.

The thing is, it is now the pointy end of my current study period, and I am behind on almost all the things. I have had to ask for extensions on many things just so I can try and do them justice, and I am trying not to panic over the things. I want so much to be well enough to do the things at the moment, but I have to admit to myself that I'm just not. My health timeline is not matching up with my study timeline, and I am suffering for it.

2 comments health, ick, sick, thoughts, updates

That *other* illness I sometimes get.

PLEASE NOTE: In this blog post I will be talking about a health condition that might make people feel uncomfortable. If you start reading and find yourself getting a bit triggered by this, please stop reading. Go check out one of my posts on books or morning routines, make yourself a cup of tea. As always, self-care is paramount.


My funny little realisation recently that I wanted to use my writing to help people - and particularly help people dealing with health problems - led me to start thinking about how I could do this. And something has happened to me twice (maybe three times) this year (already) that I don't talk to other people about.

It is an infection that I get with some regularity, despite my best attempts to avoid it. Every time I turn up to the doctor with this one, they tell me the same things (which I always follow to the letter), but apologise for not being able to offer more assistance. I had a brief respite from any symptoms of this infection when I was seeing my naturopath - but sometimes even the things she gave me to help don't seem to touch it.

What I'm talking about is an infection called Cystitis - a Urinary Tract Infection (UTI).

I am sure to people that have not experienced any sort of UTI, this small thing might not sound too bad. For some, it actually isn't - people don't often experience all the same symptoms with this one, and can just go to the doctor with some minor back pain or exhaustion and find that a script of antibiotics clears them right up.

I've never been one of those people. I started getting cystitis back in 2009, though I do have some vague memories of getting something like it when I was a kid, and having my mum take care of me and help me get through it. Whenever I get cystitis now (and it is unfortunately quite frequently), it starts with a burning sensation when I go to the bathroom. A burning sensation that gets steadily worse as time goes on, even if I am drinking lots of water, trying to flush out the offending germs.

Then I get pain in my lower abdomen, aching and yet severe. By this point I have usually heated up a heat pack or two - one to sit on, one to go on my tummy - to try and relieve the pain. Sometimes it helps. In some more vicious versions of the infection, it helps only a tiny bit. I often find myself rocking backwards and forwards, trying desperately to remember that I am a happy person. I am in so much pain and discomfort by this point - pain and discomfort that I can't escape - that I am usually very close to tears. I often want to go to the bathroom desperately, but fear the pain of actually going. 

If things have gotten to this point (sometimes I will just have a few symptoms but they go away with some care), I will go to the doctor and do the urine test and all of that stuff (more on that if requested, as I know some people have never had a UTI [this baffles me] and don't know what I mean). Sometimes the test will say I am okay, which is frustrating, but my doctors are ones that understand my case specifically and so we will talk through options. I have to be careful, as I am allergic to some antibiotics for UTIs, so I have to go on a different one to those - and I don't want to take it so much that I become immune to it, you know?

Writing about this is so hard, because it brings up a lot of pain and discomfort just as a topic. Many people I have seen about this problem say that cystitis comes up a lot for women that are unhappy in their relationships, or women that are holding a lot of anger inside. And yes, as one of my recent posts will attest, I do get angry sometimes, but it rarely correlates with when I get sick from a UTI. But I am not unhappy in my relationship, and it is frustrating to me when the same people continue to ask that about me when I just want them to find another reason why I get this so often, rather than just focusing in on the one they know.

If you experience cystitis, or interstitial cystitis (where the symptoms present themselves over and over again, with rarely a break) then I really really feel for you. I am so so sorry. This is one of those things I wouldn't wish on my worst enemy (even if I was really really mad), and I know some people that have had to go to hospital when this infection spreads to the kidneys - luckily I have never had that experience as my body is so sensitive I tend to pick up on symptoms straightaway.

I realise that this post is a bit convoluted and doesn't make a lot of sense, but I feel so new to writing about this condition. I am not sure I will do it again, but I want people to know that they aren't alone in their experiences. Cystitis happens to so many people and yet we hardly talk about it. Most people don't know it exists. The only time I have ever seen it in 'the popular sphere' is in Eat Pray Love by Elizabeth Gilbert - she gets a UTI after having much sexy times. (Just to be clear, you don't always get UTIs after sexy times. They can come on for a multitude of reasons, and women with interstitial cystitis can just get it for no reason at all.)

As much as I want to start this conversation, I am still frightened. Frightened of what people might think of me, frightened of the illness itself. I think I have a long way to go to heal myself of this one.

Love to all who read.

2 comments health, ick, sick, spoonie diaries

When things just don't feel right.

I have had many instances of thinking everything is going just dandy and then finding out that, actually, I don't feel so great.
This is something I've had to come to terms with. Sometimes, when I organise to go out and have a meal with friends, I end up finding that I am too nauseous to eat anything.
Occasionally, when I make plans to spend a day out with my boyfriend, I find I am too exhausted to get up.
These thing happen - more than I'd care to admit. And sometimes it gets to me, and other times I just keep trucking on.
If you come across me at certain times, I am grumpy. And this could be for multiple reasons, but more often than not it's because I have had enough of whatever symptom I have been dealing with lately.

And let me tell you, it is so difficult to keep going sometimes when you feel like people just want to gloss over what you've been experiencing for so long. There is a time for optimism - and I think of myself as a generally optimistic person - but when I am tired, sick, and just over being these things, I am not likely to react well to optimism. Xin has learnt over the years that during these times I just need cuddles, warmth (usually), and rest. I need love and understanding.
And I don't want to sound like I am pulling for sympathy, or that I in any way think the people in my life aren't doing everything they can for me, but sometimes, for others, life goes on. And for me? It feels stuck. As if I have died and I am not allowed to pass to the afterlife, nor am I allowed to fully return to the world of the living. I am in limbo.

I find that, as I write this, I am becoming more emotional. The most recent question I had about my actual condition was at least a month ago and, while that's okay, at the same time it's upsetting. And when people ask how I'm going (and genuinely want to know the answer) I find myself getting worked up as I realise just what I deal with on a daily basis. It is amazing what you can get used to. Pain, sickness, tiredness. It is all assimilated. 
I by no means want to paint a picture of suffering for you - on the contrary, the last few weeks I have been enjoying more energy, more health, more joy than I have in some time. I have been picking up new hobbies, heck, I started writing a new book! But that doesn't make it all go away. And there's still times when I turn around needing some respect, some cuddles, some general comment on how I've been doing.

I think part of the reason why people don't know what to say to me when I need understanding is because I don't let people near me when I'm particularly ill. I think, apart from medical staff, I have only allowed my boyfriend, my parents, and my brother to see me at my worst. And my best friend may have seen something resembling it once. I don't fully know what that's about or why I do it, but there you go.

I don't really know how to finish this post, but I feel I need to pull away and go back to writing my book now. Love to all who read.

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thoughts on having illness

last night I had an awful migraine - a result of three days worth of headache from paint fumes, a tight neck, and a few other things. thankfully I was able to remove myself from the paint fumes, which has meant less head pain today.
unfortunately, the after effects of migraines can sometimes be quite difficult to deal with.
I woke up feeling okay and less painful than I had in days. After about an hour, though, I started to feel tired again, and ended up going back to sleep. Xin woke me about an hour later, so I eventually got up to have some breakfast.
I spent most of the morning on the couch writing and watching tv. And then I went to sleep again. For about two hours this time. After that, I spent about half an hour trying to get my body to move. I'd experienced sleep paralysis during my nap, too (which seems to be occurring a lot more lately when I nap).
I did manage to head out with Xin for some shopping and such, but I felt really sick during the whole experience. (Although I was happy enough at certain points. And I was proud of myself for managing to go out and get a few things done!)

Sometimes I wonder if I could get more done if I didn't have days (and sometimes weeks) like this. Where it's so difficult to do even small things.

There are a lot of insecurities that come up with this. But I'm sorting through it.

I'm managing to do a bit of writing and reading, and that makes me happy. I can keep going. Keep trying. And keeping looking for that peace inside me.

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accidents do happen

hello dearest blog,
in a little while I'll post some photos from today using my phone, but for now I just need to meander along my thought pathway to calm myself.
Xin ended up helping out with the aftermath of a car crash today, while I watched on from the sidewalk. A man was hit by a car and knocked off his pushbike - thankfully he was wearing a helmet so his head injuries weren't as serious as they could have been. He had quite a few bumps and scraps, but the most obvious injury was a severely broken ankle. His foot was going in a direction it most definitely shouldn't have been going. I could see the bone under the skin protruding at an angle that can only be described as unnatural. Xin was assisting by elevating said ankle, while another kind man held the bike rider to stop him from moving his spine.


I didn't witness the car crash, but I heard it. I didn't help with the aftermath, but I watched.


My thoughts are scattered right now - I'm finding it hard to reel them back in. I am capable of witnessing that I'm stressed about work tomorrow, and about the two essays I need to finish before 5pm on Friday, but these seem like minor inconveniences compared to the knot of anxiety forming in my stomach. I'm not entirely sure why I'm reacting this way - I wasn't particularly bothered by the sight of the injuries, and I am so proud of Xin for helping out and doing what I am unable to do because of my nervous/sensitive tendencies.


Perhaps that's the root of the problem - I wonder if I could have done what Xin did. Perhaps I don't have the strength of character or the bravery to walk up to someone and offer assistance. I somewhat arrogantly believe that I am good at helping people - at talking to them and listening to them compassionately. But perhaps this is an illusion created by my own ego so that I'm more comfortable with my existence.


I have this little voice at the back of my mind saying to me 'stop it! you're making someone else's problems all about you! how selfish!', but I don't heed. Because I can't keep moving with this knot in my stomach. I can't press on without consequences to my mental health (and, probably, my physical health). And, goodness knows, I'm dancing on a knife's edge with regards to my health lately.


There have been a lot of 'perhapses' in this post. I believe that journalling out my thoughts may help, but I think for now I'll try and meditate until I'm a bit calmer.


<3

4 comments blah, ick, thoughts

Inspiration

There has been an alarming pattern occurring in my life over the last few weeks. (Granted, there are quite a few, but this is one that I'm realised just now..) I start the week pretty well. 


Mondays I have acupuncture, do some study, and rest. I see Chris, my most wonderful best friend. Sometimes I see Xin on Mondays too. It's all very restful and lovely.


Tuesdays I've been starting the day in a restful manner, then head to work in the afternoon. I work, have my supervision session with my boss, and then come home. I'm usually quite tired, but okay.


Wednesdays I sometimes go to class in the morning, but lately I've been  taking that time to myself too, unless I have a test. Then there's work in the afternoon, but just for three hours.


By the time Thursday and Friday hit, suddenly I'm exhausted, sick, and low. I can't handle going to work and, if I do go anyway, I feel horrible. Friday also has a class in the afternoon which is difficult to get to, but I have to go because of a presentation (this week, anyway).


Over the weekend, I do my best to recover. I try to rest as much as my body demands, while also trying to get study done. By Monday, I'm usually feeling tired, but okay. Then the whole cycle starts again.
Today, I lie in bed writing this post. I am feeling pretty icky. Not absolutely horrible, but enough that I can't really process very much. My head is pounding, I'm feeling nauseous, everything aches, and my glands feel giant.


And yet, I have been feeling the tricklings of inspiration coming into my private well lately. I have decided to start a new story - in fact I started it last night. I've also decided that I will be posting installments of my writing on either this blog or a new one that I will link to, so that people I know can read my writing. I don't know where this is going to lead me, but I'm following the trail because it lights me up inside.


Health is important to me. Why do I have to keep learning that?

Leave a Comment ick, sick, thoughts, warm fuzzies