Writing Through Everything

[yrbff]

(by elaina wahl)

[writingthrougheverything]

‘You’re looking well’

So I attended a ‘family do’ last weekend (my partner’s family, not my own), and lots of family members who we’ve not seen for a while greeted me with ‘you’re looking well’, or ‘you’re looking better than last time we saw you’. Now this is always tricky. Because I’m not better. I tend to answer with things like ‘thank you, but looks can be deceiving’, or ‘I wish I felt as well as I look’. Nothing too outright rude, but enough to let them know that I haven’t magically recovered since last time I saw them! The fact is that last time I saw them would have been at the end of whatever the last family event was, by which time I would be looking frazzled, pale and tired.

I think they realised when the noise levels went up and I had to put my noise cancelling headphones on, and when after an hour or so I had to go up to the hotel room for a rest, that no, despite looking fairly with-it at the beginning of the evening, I was not in fact better.

I just needed a small rant about this, because I hate these events when people ask how I am, if I’ve found anything that helps yet, and I have to give an ‘I’m still ill’ answer of some sort. It makes me feel so awkward. If I was paralysed they wouldn’t be asking me if I’d managed to walk yet. But the invisible, chronic illness is such an awkward thing. It makes me the queen of awkward, and for some reason becomes the main topic of conversation so many times. Yes, it controls my life in many ways, but I am not my illness. I have other interests. Ask me about my writing or my crafts, tell me about what you’ve been up to lately, not about that person you know who was ill but got better. Sigh. And they wonder why I avoid social events.

[writingthrougheverything]

layers of illness

one problem of living with a chronic illness, is that even though you live with, and to a certain extent get used to, feeling like crap every day, there are still days and things that can throw you. For example, any kind of pain or illness on top of and separate to your standard chronic illness. I have my period at the moment, and it’s a bad period day. Put that on top of the usual level of crappiness I have to cope with, and you get a very yukky me, feeling sorry for myself and wanting nothing more than to curl up in a ball under my duvet. but then the guilt kicks in. The feeling that ‘it’s just a period’. Millions of women deal with this every day and still manage to go about their everyday lives, so I should be able to too. Same thing happens if I get a cold - it knocks me for six, because having to cope with this new level of crappiness on top of the usual, is just too much.

So please understand when a person with chronic illness is less than their usual effervescent self because of a minor illness or situation. because what may be minor to a full-functioning well person, is a big thing to a chronically ill person.

[writingthrougheverything]

I want to eat fruit, damnit!

I just ate a cherry from my tree in the garden, and now I have a throbbing headache. Summer is such a frustrating time for me. I have tons of fruit growing in the garden - aside from the cherry trees there’s strawberries, raspberries, blackberries, blackcurrants, redcurrants, nectarines, grapes, apples, plums and pears. And I can’t eat any of them.

Me and sugar don’t get on. If I eat a tiny bit of sugar, I get a pain in my head. If I eat a lot of sugar, I lose the ability to speak properly, my brain goes into meltdown and I have to go and have a lie down. I haven’t done that in a long time. So now, I don’t eat desserts. I don’t drink fruit juice, and I don’t eat fruit. It’s rather sad.

It’s not the end of the world though. Sure, it’s depressing at times not being able to eat all this delicious fruit and sweet treats that I used to love. And it does make eating my 5-a-day somewhat tricky. But I’ve discovered little tricks to get around it. For example, I’ve discovered that while I can’t eat a fresh apricot, I can eat a dried one. I don’t know why it works, since dried fruit is very high in sugar, but for some reason I can eat one unsulphured dried apricot and not feel any ill effects. Also, if I’ve just eaten something with plenty of protein and fat, I can eat a small amount of sugar. This means I can handle sauces that have sugar in them, as long as I eat them along with some meat or fish. Or I can eat a few berries for my dessert. Or I can eat a half a natural fruit-and-nut bar as a snack. A full one is too much, as I discovered to my detriment the other day. That was not a pleasant afternoon.

Then there’s sugar substitutes. This is tricky, because sweeteners generally set of my migraine. So I’ve been trying the natural ones. Agave syrup I can handle a tiny bit of, but it’s still a bit too sweet for me. Stevia is okay in some instances but not in others, which is weird. Ricola make using stevia instead of sugar (not in all flavours, check the packet), which pleases me greatly - I can suck on a yummy liquorice flavoured sweet and it quenches the craving for sugar without giving me a headache. But I tried baking with Stevia once and it broke me. Could be the particular product I was using. For baking now I use xylitol. It’s on a par with sugar, sweetness-wise, though it doesn’t brown things as nicely as proper sugar so you have to watch out for over-cooking. I find it has a slight detectable aftertaste, but I can easily put up with that if it means I get to eat biscuits. I make them with ground almonds, which means I can chuck in a few dried cranberries for flavour too. Delicious.

What does annoy me is the refusal from many doctors to investigate or explain this reaction to me. It is not normal to have this reaction to sugar. But my blood-sugar levels appear to be normal, so the doctor just gives me a sympathetic look and sends me on my way. Thanks. So helpful.

[writingthrougheverything]

stress and jealousy

I am so jealous of people whose (who’s?) bodies are able to handle stress. Some people, I’ve heard, even thrive on it! I think I might have even used to be one of those people. (Also I apologise for the state of my grammar and sentence-forming at the moment. Stress has destroyed my proper English skills). I remember when I used to work full time in a reasonably stressful job, working to deadlines, dealing with tricksy clients, doing overtime, dealing with a sick mother at the same time. I remember when I used to work full time from home, while we were completely renovating said home. And dealing with a sick mother. I’m starting to think that the body and brain is only able to deal with so much stress in its lifetime, and I might have used mine up too quickly.

When stress accosts me now, this is what happens - I get an intense headache, I get anxious, my brain goes all fuzzy and I can’t think properly, my thought processes stop working properly, I get emotional, I feel sick, my guts play up, my heart rate is elevated, and I want to run away. My ‘flight’ reaction kicks in. Self-preservation. My adrenals don’t work properly, therefore by body has an inappropriate response to stress. If I want to survive the day and not turn into a gibbering wreck (and not have a migraine for the next 3-7 days), I have to remove myself from the stressful situation or distract myself from it. I spend a lot of time reading. I pick easy-to-read, happily-ever-after books, and I lose myself in them. This has been my go-to response to stress since forever, and it works for me.

Sometimes, if I remember, I will do some yoga-type breathing exercises. alternate-nostril breathing, 6-3-6-3 works well for me. Breathe in for a count of 6, hold for 3, breathe out for a count of 6, hold for 3, repeat. 5-7 breathing is also a good one when trying to calm down from an anxiety attack. Forcing your out breath to be longer than your in breath calms your heart rate and your mind.

Exercise is also good, but not always possible for me. Suffering from CFS I can only do a very limited amount of exercise. But going for a walk is a good way to both remove yourself from stress, and make happy endorphins that make you feel better.

Then there’s this. Writing. This blog, specifically. Usually when I’m writing I’m doing it at least partly, if not wholly for other people. I’m writing what I think they will enjoy/appreciate/be affected by. But this is just for me. So I can write anything here, and not worry about what people think of it, which is very liberating. I don’t have to be all upbeat and inspirational. But what I keep finding (for the most part), is that as I write, whatever was bothering me shrinks down and becomes a much less bothering monster. I could have just whinged about what was stressing me out - I had half a mind to do that when I started writing. But this is an organic process and instead this post turned into something else. Something healthier I think. I hope. I think. It might not make much sense, but it’s done me good so who gives a shit?

[writingthrougheverything]

relapsing frustration

chronic illness comes with ups and downs. Many of them. This post is more difficult to write than usual because my brain is currently resembling porridge, but I am still bothering because the writer in me needs to put the frustration into words. So here I am trying to recount how incredibly frustrating it is to slide into a bad week. A bad day is frustrating enough - you’re doing really well but then you overdo it or get cocky and eat something you shouldn’t, and you have to put up with a bad day or two to pay for it. Usually though, by day 3 at the latest I’m starting to feel better again and able to do stuff. This time though I’ve been feeling like this for almost a week and it’s getting to me now. It might be a migraine attack - usually characterized by the vertigo I’m currently suffering - but if it is it’s a damned long one, and is accompanied by a brain-and-body-fatigue that’s annoyingly debilitating. I’m not normally one to lay around doing nothing, but I’m reduced to it far more than I would like at the moment. I spend a lot of time in my recliner reading, rather than flat out sleeping, but these past few days I’ve been sleeping more because I just. Can’t. Stay. Awake.

The vertigo is a curious and horrible thing. I went with OH to the hospital for an outpatient appointment this morning, and the lights in there always do me in. By the time we were leaving it took all of my concentration to put on foot in front of the other and walk, because I’d lost all awareness of where the floor was. Sitting here writing, my head is gently spinning. When I get up and walk around or try to do something I have to hang onto walls etc because I feel all disorientated. It’s a very hard feeling to describe. I guess it’s a little like being really drunk, when you lose control of your body in relation to its surroundings. You can walk, but only if you put all of your concentration into it. If you try doing something else at the same time, like talking to someone, or get distracted by something, everything goes sideways very quickly. I always think it’s the most debilitating of all my symptoms, because it’s the one I find hardest to live through. The headaches, nausea, fatigue and even brain fog to a certain extent, I can work through when I need to and do stuff. But the vertigo really makes life difficult.

So at the moment I’m fighting depression, because that also happens when I get dropped into a bad week. The longer a bad period lasts, the harder it is not to give in to depression. I have to remain hopeful that this will pass, that by the weekend I will be feeling better (if nothing else does it the progesterone cream that I start on friday should), but I know from experience that it doesn’t always pass. I’ve been here before, at the stage when I thought I was doing really well, only to be suddenly thrown backwards and have spent the last two years slowly clawing my way back from it. But for the moment, I will keep positive and uphold the belief that this may be a longer bout than usual, but it will pass. It will pass. It will pass. It will pass...

[writingthrougheverything]

I still haven't worked out how to make my avatar photo the right way up.

me

[writingthrougheverything]

you know it's a bad day when the three minutes it takes to heat up soup is too long to stand up for.

me

[writingthrougheverything]

you know it's a bad day when you open a bag of crisps because you're too knackered to make proper food, and then you have to suck them to death because the crunching is too loud in your head

me

[writingthrougheverything]

The curse of summer

So while everyone else is loving the fact that the weather’s gone all summery recently, I’m having a bit of a moan. It’s not that I don’t appreciate summer - I actually love all the seasons, I’m a bit of an earth witch type like that. But me and my body don’t always agree. I have temperature issues. I feel the cold more than most, so you’ll find me wandering around indoors with a cardigan on in the summer (partly because our old stone house holds heat about as well as a fridge). But I also feel the heat more than most, so sunbathing is not an option for me - it makes me faint like a Victorian lady. I reckon there’s about 2 degrees, between 20 and 21oC, which are good for me. and that’s shade temperature with zero humidity and not involving anything strenuous I’m talking. If it’s at all humid, or if I’m in the sun, apart from the fact that I’ll be wearing a hat and sunnies cos it’s too bright for lil ole me, then I’m near useless. I just get all fatigued and even standing up becomes hard work. 

I’m trying to mow the lawn today. According to the weather report it’s 18 or 19oC outside. It’s sunny and a bit humid, and I’m having to do the mowing in short stints, managing about half the length of time I normally do before I need to sit in the shade for half an hour and recover. This is still spring. 19 degrees is not hot. I’m just a delicate flower who needs careful looking after. Which is a pain in the arse, because I used to be a strong woman who could mix concrete and help build a house. So I’m having another rant, and letting all you temperature-sensitive bunnies out there know that you’re not the only ones, and yes, it does suck.

[writingthrougheverything]

My Brain is Working Against Itself

I’m having issues with my brain at the moment. I mean, I always have issues with my brain - brain fog, confusion, anxiety, et al, but recently it seems to be maliciously working against me. Two recent examples:

I’m out doing food shopping on my own (a challenging activity at the best of times), and I need to buy some bread for OH. Idiot brain: Let’s get this one! We don’t usually get this one, it looks different, let’s get it! Rational brain: I don’t know, I’m sure that’s the type that OH doesn’t like. We’d better just get this other one, we know he likes that. Idiot brain: No. We’re getting this one. I’m in charge here. OH (next day): Can you get different bread next time? I don’t like that one.

I’m online, booking a blood test. This isn’t as straight-forward as it sounds as I need to either get a taxi to the surgery at great expense, or ask my neighbour for a lift, so I need to work out when she might be free. Idiot brain: Let’s book this one on Friday so we can get it over and done with. Rational brain: But we’re going away for the weekend on friday, there will be lots to do. It would be better to book it for one day next week. Idiot brain: I don’t give a shit, I’m booking it anyway. There it’s done and you can’t change it.

So yeah, these are small things but they serve to make life more difficult and annoying. Because of incidents like this I spend a lot of time second-guessing myself, trying to work out if idiot-brain or rational-brain is in charge and whether I’m making a stupid mistake. This often leads to doing nothing at all, rather than doing something that might be wrong. It also leads to a lot of time spent going over things and wishing I could have done them differently, which is not a healthy passtime. How do I stop idiot-brain from taking over and learn to trust myself again? I’m still working on that but I’ll let you know if I come up with an answer.

[writingthrougheverything]

Are my genes making me ill, and the trials of talking to friends

So I’ve started investigating the whole MTHFR gene mutation thing. Which I am incapable of reading/writing without saying ‘motherfucker’ in my head. Am I the only one? Surely not. Anyway, there’s a lot of hooha on t’internet about how this gene mutation may or may not be making me more ill. At the very least, it’s probably affecting my ability to absorb/use certain vitamins. Why, I ask, is it making me ill now when it managed not to for 33 years of my life? I’m not sure there’s an answer for that though. The thing is, as with most of my research, it’s all rather complicated. And very few doctors are down with it, especially in the UK, which means me, the sick person, has to do all the research myself and experiment on myself with supplements.

At the moment I’m still at the stage of reading and re-reading articles and posts about it, hoping at some point the information is going to seep into my brain and suddenly make sense. And if I’m lucky, maybe even make it into my memory. What it won’t do is make itself memorized and understood sufficiently for me to be able to explain it to anyone else, which I find a huge pain in the arse. A few people who care enough to keep up with my ongoing quest for health ask me what I’m looking into now and then, so I try to tell them, and it just comes out of my mouth as a lot of ‘um’, ‘err’, a few medical terms, probably mispronounced or misused, and not quite enough actual information to make sense. I try paraphrasing. ‘So yeah, there’s this gene mutation that some people have that can mess you up, so I’m trying some tablets that might make it a bit better’. This usually goes better. People like it when they ask about me, and I have something positive to tell them, but they don’t like it so much (understandably) when I launch into an essay about some little-known virus/part of the body/supplement/test. I imagine it’s a little bit how I feel when I ask people how they are and they launch into a convoluted story about something that happened at work the other day, or something one of their kids did. Our lives don’t cross over in the ways they once did - we’re each of us too different and strange to the other to be able to connect successfully. Sad but true, and the reason why I won’t stop stalking my friends on facebook, so I can remember what having a normal life is like, and so I can do my best to relate to them when I see them.

[writingthrougheverything]

Fun and creative ways to practice mindfulness

I’ve always loved the ideas of sitting down with a candle, some relaxing music and meditating. Mindfulness appeals to the side of me that knows slowing down always does me good. But the idea has always been better than the reality. For a start, I struggle to make the time for it (I always say I’m goingRead more

It took me a while to get my head around the idea of mindfulness, but I truly believe that meditation and living in the now can be really helpful for people with chronic illness. What I like about mindfulness is that it doesn’t have to take the form of traditional meditation, as displayed by this lovely article.

[arthriticnerd]

I think one of the worst parts of having a chronic disease is how it sometimes just breaks you.

You can have several bad days in a row and handle it fine; then one day you lose it because you’ve gone so long taking it that you eventually get to a point where you just can’t do it anymore.

You’ll try to open the dryer door and can’t.

You’ll be cold and won’t be able to get warm. The kind of cold where you can’t get warm so you want to put your blanket in the dryer for half hour but you can’t open the damn door.

You feel grateful for any help you have, but you wish you didn’t need it in the first place.

No one tells you when you get sick that you will have days that don’t just test your pain levels or your patience, they will literally test your very will to get through the day.

[writingthrougheverything]

I know those days all too well.

[words-pics-flicks]

Before you can kill the monster you have to say its name.

Terry Pratchett (via thekidshouse)

still looking for my monster’s name

[amandagenine-deactivated2019062]

I’m tired of people romanticizing overexertion. Exhausted is not the new chic, coffee (though a delicious necessity) is not a food group, and running on fumes is not admirable. Why do we hold pedestals for sleepless nights, breakdowns, and inner turmoil? Are those really things to aspire to? Self-care. Balance. The ability to know when your body, mind, and spirit need to take a step back. Those are things we should admire. We have to stop blurring the line between ‘commitment’ and self-endangerment because too many people are burning out before they have a chance to truly shine.

(via carodiamondis)

[writingthrougheverything]

Am I losing myself?

I can’t help but feel I’m losing sight of myself lately. Before I got ill, I was happy with my life. I’d done a lot. Travelled loads, partied tons, I had a job I enjoyed (for the most part), I had a full life. Then I got ill, and all that went away. I can’t work anymore as I just don’t have the concentration for it, and I can’t even do a simple manual job as I can’t commit to it and even if I could the fatigue would stop me from being capable. Because I can’t work, OH has to work extra to cover our bills as we’re in the unenviable state of earning enough to not qualify for benefits, but not quite enough to actually live on and pay the mortgage.

So I’m sat at home all day every day feeling like crap and occassionally doing a bit of housework when I feel up to it, and OH is working all hours to pay the bills. I can’t go out as we live in the middle of nowhere and even if I had a car I don’t feel up to driving most of the time. I can’t hold a conversation for long without it doing my head in, so I can’t spend my time catching up with friends. Even if I could, I wouldn’t have anything to talk about except whatever my latest research into testing/supplements/viruses/whatever is. And when your friends’ lives are progressing but yours isn’t, it leaves something of a vacuum. I am in stasis.  

I’ve lost confidence in myself because I can’t rely on my own brain any more. My memory (which has never been stellar) is shot to pieces. I can’t concentrate for shit, and if more than one person is involved in a conversation I’m stuffed. When I try talking to people I spend half my time trying to find the right word for what I’m trying to say. There are a lot of pauses, and a lot of descriptions that go something like ‘you know that thing that you use to do that thing with’. Anxiety and depression don’t help the whole self-confidence thing either.

Chronic Illness is changing me, and I don’t like who it’s turning me into. But I’m not giving in. This is just a rant, because writing it down makes me feel a little bit better. No matter that this has taken me ages to do because I have to keep stopping to make sentences work or think of words. No matter that I need to go and rest for an hour now to recover from writing this. I have written it, and that action has reminded me that I can be myself still, I just need to be a slower version of myself. I will keep fighting to hold onto myself for as long as I need to.