‘It’s *just* your hormones’

This phrase annoys me two ways and they’re both the polar opposites of each other! It’s a phrase that gets batted around quite a lot as a way to ‘excuse’ women’s behaviour, in particular. But whichever way it’s used, it’s irritating. So it’s now one of the phrases I’d quite like to see eradicated.

Hormones control everything. I don’t think most people realise that all of your systems rely on hormones to make them work. Hormones tell the different bits of body to do things, they’re like messengers. Otherwise your body is just a bunch of post boxes without any mail getting delivered anywhere else. They zip around all day every day, even when you’re asleep. In fact, a lot happens when you’re asleep and you don’t even know it. It’s actually pretty miraculous that we wake up every day because so much has to work in the background while we were counting sheep.

There are some hormones you need to survive. Some you’d die if you didn’t have them- cortisol is one, insulin is another. Not your life would be more miserable or you’d have horrible symptoms. You’d actually die without them pretty fast. Which makes hormones pretty damn important since they’re all linked together. And if one goes a bit haywire, chances are this has a knock on effect on the others. But it’s a bit like spreading gossip or Chinese whispers- the messages get changed slightly as it goes through the system, or things change so that by the time the second message has got through, it’s too late to be effective. Hormones are tricky things.

Which is why I get really mad when someone says ‘it’s just your hormones’. It’s said in two ways:

1. To try to dismiss what you’re feeling.

In the same way saying ‘calm down’ never makes the receiver feel calmer, telling someone ‘it’s just their hormones’ when they’re distressed, or words to that effect is like lighting a match. Particularly if you shout it at them. In fact, if I am having a meltdown, shouting at me is about the worst thing you can do, because it makes the hormone imbalance worse. Someone who has a hormone imbalance isn’t necessarily physically able to produce the hormones that help other people rationalise, keep calm or let go of something. And when you’re feeling really unbalanced hormone-wise, you’re not just having mood swings, or being irritable or tearful, you’re also likely feeling paranoid, guilty, anxious and possibly suicidal. About what? Probably about something minute. But can you get your body to realise that? Not easily- it’s not a mental problem, it’s a chemical problem. So hearing things like ‘get a grip’, ‘just let it go’, ‘calm down’, or it’s ‘just your hormones’ makes you feel even more paranoid, tearful and stressed which adds to the problem. Even if it is something stupid to everyone else, a person with an imbalance can’t get a grip, and telling them so just makes it worse because you know you’re being ‘silly’ and you can’t do a thing about it.

I tend to have meltdowns at home and not in front of other people unless I get caught out. But because it’s not just people like me who will have this problem, pregnant women also have similar imbalances (although they get a bit more of a free pass), here’s what helps me when I’m in a cycle, so maybe it might help some other people.

I will be going round in circles- sorry about that. I’m usually so disorientated by whatever it is that’s stressing me out I won’t remember the start of the cycle so will keep going over it. And it will sound like blithering but it’s important that someone hears my concerns and takes them seriously. It might be stupid. But to me, it’s really not at that point and if you want me to stop having a meltdown, trying to snap me out of it actually takes longer! So listen to me. Write my main worries down or summarise them to me at the end so I can see I’ve been heard and you can repeat to me that we’ve been over it.

Do something that shows me I’m not pissing you off. I will be over sensitive to everything and read things into things which aren’t actually there or are just coincidence. But it’s harder for me to think that if you’ve given me a hug or made me a cup of tea or come and sat next to me.

The worst thing about having had a meltdown is not knowing what to do with myself afterwards. Hormones are working overdrive and it sets the whole thing off again if there’s nothing to bring me back down to normal. So I need a plan. It’s doesn’t have to involve you, but I need the next hour planned out so that I can follow it and feel in control. But I won’t be able to come up with something myself because I won’t be able to see the wood for the trees. So it might be ‘go get your crochet, what animal are you working on?’ Or ‘watch an episode of X and then have a bath. Do you need a magazine?’.

That being said, this brings me to the second way people use the phrase:

2. To excuse negative behaviour

Like I said, I try to reserve my meltdowns to home and not eat random people alive just because my hormones have gone a bit crazy. Although a poor British Gas man got my wrath one day! I try to walk away from as many situations as I can or just stop talking if I think I might be rude. Sometimes I get it wrong, but I’ll always apologise afterwards, which is more than can be said for some people who don’t have hormone problems!

So I find it annoying when some people use it as an excuse regularly. Whichever way you look at it, no one deserves to be treated like crap all the time, hormone problem or no hormone problem. Something like PMT or being stressed at work is not a reason, in my mind, to be rude to everyone you know for a week every month. PMT is like a fluffy rainbow unicorn and my illness a fire breathing dragon in comparison- if I can try hard to minimise my outbursts as much as possible (or at least apologise), then other people should try too!

Note how I said try. Everyone’s human and has a bad day. I’m not talking about people who have a bit of an off moment or who are going through a hard time, I’m talking about people who use ‘it’s my hormones’ constantly as an excuse for being rude.

So you can see, it’s a bit of a tricky phrase because using it as an excuse is annoying but said flippantly is also annoying. Maybe it’s the ‘just’ that it always comes with. I don’t know. But I do know that I will probably walk away quite sharpish if it’s said to me so I don’t end up punching the person who says it to me!

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A Year Ago Today…

… I made my first Out With Animals animal! Well, it wasn’t officially for Out With Animals (yet), but my Facebook ‘On This Day’ thing tells me this:

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I’d been knitting animals for my nephew for Christmas. And I saw a koala pattern and thought ‘that’s cute, I’ll make that’. Mostly for something to do! This was before I learnt about Pinterest’s existence, so maybe I specifically liked the idea of a koala, rather than just coming across it. Either way, a year ago today I made Kenny the Koala!

I remember my husband coming home from work and asking why I’d made a Koala and me saying ‘why not? maybe I’ll post them to the Postpals kids’.

The next day, so tomorrow a year ago, I was lounging around in my pyjamas trying to get something a bit more concrete with the idea of posting animals. You can read about my thought process here. My husband came home from work and I told him about the progress in my idea. So he asked what I was going to make next. Pass, I said.

On the 12th January, I finished Eric the Elephant.

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I’d told a friend about my idea and she liked the sound of it and said that Coventry’s animal was an elephant. So if I made an elephant, she would take it on an adventure during her lunch break for me. Great!

I can’t quite remember why I decided to make an owl as the next animal, but I have a feeling I’d told another friend about my plan and she’d said how she was going to see the Harry Potter play and how an owl might be a good animal to take. So I made Olivia the Owl later that week.

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I wanted to test out how it would work, so my husband and I took Kenny the Koala to Leamington Spa for the day. His adventure involved a walk around the park, a trip to Nandos, a nap and a trip the cinema. Accompanied by the grumblings of my husband as he tried to take photos of this tiny animal without it getting wet, muddy or lost. But by the end of it, he was surprisingly enthusiastic (as much enthusiasm as my husband shows anyway!) and was telling me that my photos weren’t good enough and finding different things for Kenny to be photographed with.

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I didn’t get around to writing Kenny the Koala’s story until I’d set up my blog, and his story was first published on the 6th February. So that’s when Out With Animals’s official anniversary shall be! I feel like I should have some kind of online celebration or something for it- there’ve been a lot of animals and volunteers in the space of a year! Maybe something will come to me while I lounge around in my PJs like it did last year, but in the meantime, if anyone has any suggestions as to how to make the occasion online then let me know!

 

 

New Year, New Project: Temperature Scarf

I was flicking through Instagram and saw a post by Repeat Crafter Me about how they’d always liked the idea of a temperature blanket as a year long project. How cool! The gist of it is, every day you crochet based on the temperature for that day. Some people do granny squares, others stripes. It doesn’t really matter how you do it. But investing in wool for a blanket would be really expensive, and also a bit daunting- what if I missed a day? Then I’d never catch up. Then I saw someone on Pinterest doing the same thing with a scarf (yes, I spend most of my day stalking crochet people on social media!). A scarf is doable, isn’t much in terms of yarn and it wouldn’t take that long to catch up if I missed a day because I was busy. Or let’s face it- the most likely reason I’d miss a day would be because I was in hospital!

Here’s a photo of the scarf idea I found, from Repeat Crafter Me.

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So I had a look at the temperatures and decided to re-think them for our climate here in Coventry, UK. We very rarely have temperatures below -6 and above 32, but we do have a lot of temperatures falling into the blue shades. Which might get a bit boring if it’s the same colour blue for every day. I came up with these as my temperatures.

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I gave it to my husband to check to make sure I hadn’t done anything stupid. Either he’s as stupid as I am, or he really doesn’t pay much attention to any of my crochet ventures (probably the latter), because he declared it was fine. Except it wasn’t- I’d written 7-13 for the 4th colour from the right, which obviously wouldn’t work. Thankfully I noticed this on day 3, so could just redo the 3 days of the year so far. It’s a good job I noticed early on and not in March or something!

I told my husband about his lack of observation skills and he kind of did his eye roll thing (meaning- ‘jesus, you’re showing me crochet stuff I don’t care about). Then he asked ‘how will you decide what the temperature is though?’

Good point! Some people do it based on the temperature at the time they sit down to do it, some people do it based on the top temperature for the day. I decided that my time for doing the scarf would be immediately after breakfast, when I have to sit still for at least half an hour and not move until my tablets and food have all kicked in. Which is a great way of making sure I do it every day, but it does mean that the temperatures would all be the same for a lot of the stripes. My mum bought my husband a google box thing for christmas, which if I say ‘good morning’ to it when I come downstairs, it turns on the lights and tells me the weather. Including the top temperature! Bingo. That’s how I’ll do it then. And google knows everything!

So I’ve been doing it for about 7 days, today is the 8th day and I’ve had a nice spectrum of all the blues so far.

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If it snows again I might do a white row. For now, I’ve just been doing 50 single crochet every day, but I saw someone else do a different stitch for each month, so you could differentiate between them, so I might experiment. I’m quite enjoying it so far! I shall keep you posted 🙂

Going away for the weekend

What do you usually pack when going away for the weekend? Clothes? Toothbrush? Packing for a chronic illness is more complicated. I’ve always gone by the mentality that it’s better to be over-prepared than under, but I’m not actually packing over-the-top for going away- this is what’s recommended people with adrenal insufficiency have when they’re at home, so logic means that it’s even more useful when you’re in a different place from your GP and Hospital who know you. So here’s just my ‘medical’ stuff, before I even pack normal stuff:

That doesn’t include my meds bag and emergency injection I usually carry in my handbag anyway.

I always have a Hospital bag packed anyway with spare boxes of my medications, pjs, wash bag, phone charger, book, flip flops… pregnant women have one and they (usually) only go to Hospital once in 9 months. I tend to end up in Hospital 3-4 times in that period. So it makes sense. And if I take it with me when I go away, it saves having to find extra meds etc to take away.

Then I have a blood pressure machine (also does heart rate), thermometer and blood sugar testing kit. If I do have to go to Hospital, this is basically everything they do at triage and we’re encouraged to check these things regularly as patients with AI anyway. So I know what numbers mean I have to double or triple my HC and which ones mean I should be heading to Hospital. Basically, I can avoid going by doing my own obs and making adjustments myself for a little while, rather than thinking ‘I feel ill but not sure if I’m bad enough for Hospital ill’ and risk getting it wrong. Plus it’s useful to be able to say to people ‘these were my obs an hour ago’ as a benchmark.

All my daily pills are in a dossett box already so I obviously need to pack those. And I always take extra hydrocortisone with me in case I end up stuck away from home because of weather or something, or if I end up in Hospital (they never have it) or need to stress dose for some reason.

I have a medical alert tag with info on the back attached to my head rest in the car. If we’re in an accident, emergency response people need to know to give me drugs fast because otherwise I would die.

I need my sharps box for the lancets from my blood sugar testing kit and if I use my injection to dispose of the needles safely. I’m also taking more lancets and testing strips with me than I would for a normal day because I’m going to be doing more and eating different things from usual so will probably need to check it more regularly to keep on top of things. I don’t usually test it on days where I eat my ‘normal’ foods unless I feel weird.

One of the biggest reasons people have adrenal crisis is because they’re dehydrated, so rehydration sachets also make it into my luggage. When you’re away, you’re out of your normal routine so sometimes you get caught out and haven’t drunk enough. But drinking too much can also flush out electrolytes, which also causes crisis. So it’s important to make sure you’re not just replacing fluids. Plus if you get any sickness or an upset stomach, it helps with that too until you can get to a hospital. Failing that, I also have antisickness meds packed.

I tend to use more lidocaine patches when I’m away because I’m doing more so have worse pain.

I take these cards with me on a normal day, but they’re more important when you’re away from home. There are alerts and flags set up on my name in my local hospital and ambulance trust which help people know how to treat me. But these don’t work out of the county I live in, and, because it’s an unusual illness, it’s best not to risk being overlooked because someone is unaware of how time sensitive it is.

They just tell people what combinations of drugs to give me and what symptoms they should be looking out for. They’re useful if there isn’t an endo on call to advise. I also make sure I know where the nearest hospital is and whether or not it’s a major trauma centre ie are they likely to know what to do with me!

Weekend packing is relatively simple because you tend to be in the same country and you’ve only got to take a couple of days worth of stuff. And you don’t have to worry about baggage allowance! Packing for abroad or longer trips takes a bit more planning because sometimes you need to carry extra documents or ask your doctor for extra medications in plenty of time.

Stuff from 2017

I wanted to try to make a nice ’17 things from 2017 post’ like other bloggers are doing, but I can only think of 14 highlights. Either that or I’ve forgotten some of the cool things I did! Either way, this post is a work in progress, so if you think I’ve missed something/we did something together that fits in, let me know!

2017 was a bit of a ‘meh’ year. It happened. I survived. I had some lovely times, I also had some pretty crappy ones. Here are some of the blog-worthy things my husband and I came up with while on the M25 this morning.

(In a random order, depending on when I thought of them)

  1. I started my Out With Animals blog. It’s a charity-based blog and you can read about why I started it in a lot of detail here. I looked a bit nuts to start off with, persuading my friends to take animals out and take photos of them to post to sick or vulnerable children, but I’m pretty proud of how far it’s come in less than a year.

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2) I learnt how to crochet. Pretty important it turned out for both my animals blog and my other venture this year! Here’s some of where I started:

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and here’s what I can do now!

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3) I decided that if I was sitting around crocheting all day, I may as well try to make some money from it. So I opened an Etsy shop and Facebook page. My small business doesn’t earn me loads of money and I’m never going to be a millionaire, but it funds my crochet hobby (obsession) and gives me a sense of purpose- I’m really liking the challenge. Search Ok Then What’s Next (or @okthenwhatsnext) on social media if you want to follow my pages 🙂

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4) I became an Auntie again! Now I have a niece and nephew and I really like spending time with them.

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5) I wrote a book. Which I self published, and then people actually bought it! Again, not lots of people, but it’s still pretty cool! Lots of people asked if my Out With Animals stories were available as a book, so I thought ‘why not?’. Plus it’s a great way for keeping the blog going- I can’t work so was getting a bit worried about how I was going to keep being able to afford to make and post animals, but selling the books means it kind of funds itself if people keep buying them. Send me a message via my social media @outwithanimals or through this blog if you want to order a copy 🙂

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6) Some posts I wrote about adrenal insufficiency on this blog got picked up, retweeted, shared and commented on by big charities either in the UK or the USA. I’ve also had messages from other patients saying how useful they’ve found it. I started it for that reason- when I got diagnosed I couldn’t find anything which told me how to actually live with the illness. So I’m glad it can help other people.

7) I volunteered at an endocrine conference. So I got to help with doctor/nurse education about adrenal insufficiency and addison’s disease. Plus I learnt a lot of new things too.

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8) I published some of my crochet patterns online. And people have downloaded them! I guess this means I can call myself a crochet designer now? I have a ravelry and etsy shop where you can download these from (also called Ok then What’s Next).

9) My husband and I went to 2 concerts at the Royal Albert Hall. Both were really good! We saw Harry Potter and the Philosopher’s Stone performed by a live orchestra and also the Piano Guys.

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10) I turned 30. And we had a ‘surprise’ party for it with lots of my friends. I hadn’t seen a lot of them for a long time so it made it extra special. Here’s a photo of my really tasty cake a friend made me:

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11) I had fun trying to complete by 30 things lists. I didn’t quite achieve all of them, but I’m still working on them! I had a 30 things I wanted to try before I turned 30 list, and 30 foods I wanted to eat before 30 list. It was great fun to do, so I’d recommend doing it even if you haven’t got a significant birthday coming up!

12) We went on holiday to Devon with my parents. And 2 dinosaur friends! We had a nice week away in a part of the world I hadn’t been to before. A holiday involving scones, ice cream and the sea was great!

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13) I sent my 100th animal out on an adventure for my Out With Animals Blog. It was Timothy the Tuatara (nope, I didn’t know what one was either- it’s somewhere between a gecko and am iguana!). Considering I couldn’t crochet at the start of the year, it’s very impressive, I feel anyway, to have made 100 animals in less than a year!

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14) I meditated every day for the entire year. Bringing my streak to 2 years of meditating every day.

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There’s a whistle-stop tour of my year! And if anyone can think of 3 other blog-worthy things I might have done, I’d quite like the symmetry of getting 17 things for 2017 😉

 

Don’t go out if you’re ill

…or at least think about it. I don’t mean if you’ve got a cold or feeling a bit run down, life carries on with those. I mean if you’ve had a stomach bug and aren’t 48 hours clear, have a temperature or have a chest infection which is still contagious.

A couple of days ago, I read someone on twitter complain that they’d had a stomach bug all night but were still planning a night out even though they still felt terrible. And how they were hoping they’d stop being sick by then. Followed by several emojis. Either they were being dramatic and it wasn’t a stomach bug or they’re being a tad selfish.

Just because you’re willing to go out and spread your germs about doesn’t mean the rest of us want to get them. You missing a night out because of a bug isn’t that big a deal, but passing your common, ‘normal’ illness onto other people can literally mean another person misses out on weeks or even months of their life while they try to recover.

If I got a stomach bug, I’d probably be put in intensive care. It takes me a minimum of 3 weeks to get over a basic cold (which I accept I will catch), never mind a chest infection. And then my immune system is so messed up I catch every little thing going round. Obviously I take precautions- lots of anti bacterial gel and I try to avoid close contact with others. But some places I can’t avoid and I also have to have a little bit of a life rather than living in some kind of safety bubble. If I’m going to catch a cold, I’ll catch it. I don’t, however, need to catch someone’s stomach bug.

Besides, it’s not just people with chronic illnesses like mine who don’t want to get sick because someone goes out when they know they’re contagious:

– pregnant women face additional risks by getting ill

– caretakers of chronically ill people- people with compromised immune systems

– cancer patients

– people who have small children

– elderly people

– people who look after the elderly

– people who work with patients

– or, how about no one wants to get ill just because you absolutely had to go on your night out.

So, if you’ve been throwing up all night, have the flu or something else really contagious, please think about how much of an impact you spreading your germs to people has on other people before you decide to head out. One night off for you could equal avoiding a lot of illness for someone else.

What I learnt from my nephew

Everything’s exciting when you’re three years old. Christmas tree lights, bubbles in the bath, a slide in the park were all met with a huge ‘wow’. None of these were new to him, but he enjoyed it as though it was the first time he’d ever seen it.

When do we lose that? When do we stop appreciating the small but still pretty cool things? My nephew can play the same game over and over again for ages. And then when he gets bored he sits still for a nanosecond before tackling something else with the same level of enthusiasm, and the same degree of absorption. He might move from one activity to another quite quickly on days when he’s unsettled, but he gives whatever he’s doing his full attention, with only the odd distraction here and there.

As adults, we multitask. How long do you go without checking your phone or mindlessly scrolling Facebook? Why are we more interested in what other people are (supposedly) doing in their lives when we could be actually doing something concrete with our own there and then. I say ‘supposedly’ because if someone’s posting on social media about what they’re doing, they’re still having to take a mental break from the activity to detach themselves and post their status update. Which interrupts the flow somewhat. Usually, we don’t do just one thing at a time, or even switch between things one thing at a time, we’re normally doing at least 2 things at once. We don’t like to wait- why waste time just driving home from work when you could drive home from work *and* make a dozen phone calls which will save time later? Or you could do your online shop while watching TV. Or reply to emails while you’re waiting for the kettle to boil.

They all seem like time saving, productive things, right? Yes they are, but they encroach on the way we think about things mentally. We see being productive as the most important thing in the world, which it is for certain parts of our day- it’s supposed to free us up to pursue what we want later on. But doing time saving things which don’t impact on other people or aspects of your life soon becomes a habit, we never find the time to do what we want later on, and you find yourself being ‘productive’ while you’re with your kids in the park or out with friends at dinner. While I was playing ‘let’s drive to grandad’s house’ in a pretend car with my nephew for the 90 millionth time, I looked around and saw most of the adults in the park were half looking at their kids, half looking at their phone screens. But how many of them were actually living productive lives at that precise moment in time? Probably none. They were missing out on present life because we find it hard to stand still and just watch or interact with what’s in front of us.

So I tried really hard not to get my phone out in front of my nephew while we were playing. I tried to see the things the way he was seeing them, and I felt calmer and happier because of it. Nobody died, the world didn’t grind to a halt because I didn’t check social media or reply to messages straight away. I was content playing with him and living in the moment. And do you know what? The Christmas tree lights and decorations are quite cool, they cast lights all the way around the room. The bubbles in his bath smelt of lavender and I was actually allowed to sit in the doorway and talk to him while he had his bath- something he doesn’t usually let me do (he generally prefers my husband to me)! Maybe because I dedicated all of my focus on playing fully earlier? And I thought about how cool it used to be playing on a slide as a kid. Why don’t they have adult versions of parks?!

Focusing on just one thing might feel like a waste of time, but you gain something more important. You work out what you care about and concentrate on that instead. And if you ‘haven’t got time for X’, then you’re really not living your life as fully (and productively) as you could be. So less productivity actually leads to a ‘more productive’ and fulfilling life overall.

Being a musician who doesn’t play at Christmas

It’s weird having grown up with music being the focal point of Christmas for me and then not playing or singing at Christmas time. I didn’t have a ‘this is my last concert’ moment in any shape or form. I stuck it out for as long as I could. But the turning point was at a band rehearsal one Wednesday where I cried because I realised I was going to have to go to a&e because playing for a mere 10 minutes made me ill and I couldn’t keep doing it anymore. And that was it. It kind of just hit me at that moment and I’ve not played or sung with other people since.

I tried a bit at home for a while but it was really frustrating not being able to play for more than a few minutes at a time and being really, really bad at it. I would probably be better off learning a new instrument from scratch rather than trying to play one I already know how to play. Sometimes I play piano- if I play from muscle memory, I can still play most things except it physically hurts so I choose not to.

I’m not looking for people to help me solve the problem, I’m actually ok with the fact I can’t play or sing. Any form of playing causes me a lot of pain. I’m in constant pain anyway, and don’t have much more in terms of pain relief I can take, but playing/singing makes my diaphragm lock up so it gets so tight it makes it hard to breathe. Which then makes my rib cage lock up, which makes my back and ribs spasm, again making it hard to breathe. Bits of your neck are joined to your diaphragm, which means I get jaw pain and headache/migraines. I get all those pains just from talking too much and have to see a chiropractor twice a week as it is, so playing makes it a million times worse! The other thing with playing, even the piano, is physical movement hurts my joints but also having to hold yourself in a set position is something I really can’t manage for more than about 30 seconds.

So I’m ok with not playing because the level of pain involved usually involves IV HC and morphine of some description, which means Hospital. And it seems stupid to do something that makes me feel that ill when it could also potentially kill me.

This is the first year I haven’t felt like there’s a huge hole at Christmas. I’ve been getting much more out of being a spectator at concerts and listening to music than I ever did before- I still enjoy music and appreciate it in a different way, I’ve been feeling like that for a couple of years. But this is the first Christmas where I haven’t felt like a huge bit of me is missing. Music was the biggest thing in my life for 25 years- people feel sad for years at Christmas time about relationships which don’t even last that long- so it obviously still feels strange to not be involved in the Christmas preparations, but I don’t feel sad about it this year for the first time. And it’s only been 3 years, so that’s quite good going!

I’d love to play again if I’m able to- I miss the community feel, the feeling you get when you play, the challenge, the beautiful pieces… But for now I’m happy to listen and watch and appreciate the fact that if I do go back to playing, I’ll at least see everything differently and from a new perspective.

Being ‘an inspiration’

I’ve been thinking about writing a post about this for a while, but it’s been hard to sort out the best way to phrase it without sounding ungrateful or arsey. Apologies if I still don’t manage to phrase it well!

There’s a ‘thing’ at the moment where people who don’t have disabilities, either physical, learning, invisible…etc, look to people who do have disabilities and call them inspirational. It might seem like I’m sounding ungrateful by saying this- someone is recognising that people with disabilities face challenges daily that others do not, so we should be grateful of this- but it’s actually not helpful and a tad patronising. Basically, the way it feels when you do have a disability and someone calls you inspirational is that you’re inspirational because you have a disability and still manage to live. That’s it. Just because you’re alive.

Does anyone else get called inspirational for living their lives? Not because of what they choose to do with their lives, but because they wake up each morning and eat their breakfast and clean their teeth…. or even go to university or school or work…. or are married and have children? No. So a disabled person isn’t and shouldn’t be called an inspiration because they do those things too.

For one thing, it’s a lot of pressure. People throw around phrases like ‘overcoming adversity’ and ‘being a positive role model’ and ‘they never complain’. Well, actually, not everyone will walk again who is in a wheelchair. And that’s ok. Some disabled people will live a life where they neither positively nor negatively influence people. And that’s ok. And disabled people will complain about their lives, just as much as any other person complains about their lives. And that’s also ok. Just because someone is disabled doesn’t mean they have to be seen to be continuously fighting some kind of battle. It doesn’t work like that.

Secondly, you might think that by calling someone inspirational, you’re promoting equality and inclusion. But if you’re disabled, it actually feels the exact opposite. There are lots of Facebook posts saying things like ‘special ed kids just want to be accepted and play sports like regular children. Share if you think they should be included in sporting games‘. ‘Regular’ children don’t always get picked for sporting games if they’re not the best. If they’re not the best, why should someone who is considered to have a disability be chosen just because they’re special ed? They shouldn’t be excluded from a game where anyone is allowed to participate, of course, but by including them when they’re not the most worthy contender limits them in different ways. By saying that ‘people with disabilities need to be included in X because they face challenges’ minimises the amazing (and inspirational) things people with disabilities actually do. A kid with a disability might be terrible at sports but an amazing singer. But they might not have gone out and worked at nurturing their musical talent if they hadn’t learnt they were terrible at sports first because they were always allowed to play out of pity. It gives people the impression that disabled people aren’t capable of amazing things and are limited if you make them feel like the only reason they’re included is *because* they’re disabled. I purposefully didn’t write on any job application forms that I had a disability because I didn’t want to tick one of the equality and diversity boxes and risk being offered the job for that reason alone. I don’t want a job if I’m not the best candidate for it. Or another one I see a lot is ‘autistic girl goes to prom’. And? Why shouldn’t she go to prom? Why is her going news worthy?

You might be reading this and thinking ‘well, if she doesn’t want people to give her special allowances, then she should just get on with it like normal people do’. Disabled people do need reasonable adjustments or accommodations to be able to do certain things. Things like ramps and bathroom facilities or extended time in exams. Those level the playing field so that disabled people have the same opportunities as other people, not so that they can have an advantage in life.

As a person with a chronic illness/disability, I need people to recognise that I do have special needs which might need adaptations or accommodations. But because I exist and manage to live with a disability is not a reason to be called inspirational. There are lots of people with disabilities who do inspirational things which are news worthy- athletes, charity fundraisers, people who champion specific causes. But they’re inspirational because of *what* they do not because of their existence alone. Someone can have an inspirational can-do attitude, or inspire young people to pursue their dreams by demonstrating what they’re capable of or support other people in a similar position to them. However, those are all things that anyone can do and be called inspirational for, disabled or otherwise.

Everyone likes praise and recognition for things. I’m sure I do have my inspirational moments, like everyone does. But I won’t be grateful if I’m called an inspiration just for waking up in the morning and not having died overnight- you’re missing everything else that I’m capable of doing and have worked hard to pursue in life in doing so, and it puts a glass ceiling in the way which I didn’t have before.

Plans

I find this time of year particularly anxiety-inducing. There is so much pressure on having the perfect Christmas and new year and looking back at the last year and making plans for the new one. I feel pressure to be ‘normal’ on a normal day never mind the glitzed up sparkly Christmas version of me (if that even exists anymore!) that other people seem to manage to pull off at this time of year. It’s hard when you already feel like you ‘ruin’ things by needing naps/set meal times/can’t walk far etc, never mind when there’s so much more importance placed on gatherings as part of the festive season. Part of it is desperately wanting to feel normal and forget about being sick for a bit, to then be reminded of your limitations in an even bigger (more glittery) way when you ‘fail’. Part of it is how you perceive it. Part of it is the fact that people like to talk about the year gone by and their plans and it leaves you feeling stuck.

I like hearing other people’s plans and accomplishments. But, I’m not going to lie, it’s hard, and it takes a lot of strength to not get bitter and angry about it. Particularly if you’re already feeling terrible from socialising but putting on a good face, and there’s the anxiety of having to answer the question ‘what about you?’ coming up. It’s a no win situation- if you’re asked about your plans, it’s stressful. If you’re not asked because people are trying to be sensitive, it’s understandable but still stressful- you just worry about it in a different way and it makes you feel excluded even if the opposite was intended.

Chronic illness usually limits plans through health reasons, financial reasons because money is tight, logistical reasons because of treatments or practicalities or just plain ‘not a chance in even contemplating that, it’ll make me ill’. That’s before you even consider any of the ‘normal’ stuff people have to think about when factoring in olans. People’s plans usually include:

– moving house

– getting married

– having children

– travelling

– getting a promotion

– changing jobs

– getting more exercise

– setting fitness goals or starting a new hobby

– booking time away or visiting people

– getting a pet

…. just general ‘better than this year’ stuff.

Chronic illness makes all of those hard or impossible. But actually writing that list proved quite therapeutic for me- lots of people might say those are their goals but still not be able to achieve them. And, according to google, most New Year’s resolutions fail mostly through a lack of motivation.

Maybe I need to be looking at it in a different way. People who are healthy, who could manage whatever they wanted, potentially lack motivation to achieve their goals so feel like they’ve failed and wind up feeling the same as me anyway. Whereas I’m at least realistic in my goals and fail because of something I can’t control- my health. So really, things might end up the same but at least I don’t need to feel like I have to make excuses about why I haven’t managed things, or big up the things I have achieved when we have this conversation next year. I kind of know what to expect. For me, the worst bit is when my GP says ‘this year is going to be a good year for you, I can feel it. Roll on 201…’. She’s said the same thing for 4 years now, somehow I don’t believe things are going to suddenly get better when they’ve been getting steadily worse!

My goal, for now, is pretty simple:

– stay alive and live in the present.

Easier said than done. I might be limited to what I can do, but I definitely appreciate it all so much more than before I was ill. If I had a job, I wouldn’t clock watch every day, I’d appreciate the fact I can earn money myself. I love crocheting because I can make things myself and watch things grow from nothing- that’s pretty cool! If I go outside on a sunny day, I look at the different colours more closely. What’s the point in getting a massive pay rise if you’re too busy at work to enjoy the benefits of it? Or why bother having kids if you’re going to spend your entire time moaning about them? Why exactly are you trying to get healthy, because you want to or because you think that’s what everyone else wants you to do? Social media is bad for making us think we need to be living a fantastic, shiny life. But quite often the more people post on social media, the more insecure and unhappy they are, it’s just social media ‘likes’ gives them the virtual validation they’re not getting from their real lives.

Sometimes people’s circumstances also mean they don’t achieve what they set out to. Like anyone can get an illness or be in an accident, or be made redundant, for example. Sometimes it’s a lack of motivation and too much contentment in being able to ‘blame’ everyone else. Whatever the reason, goals aren’t meant to be achieved overnight or in the space of a year even. Life is the bit that’s happening now, not the list of achievements you can tick off at the end of it.

So I’m trying not to let myself get stressed about missed opportunities or plans which I’ll fail before I even try. Everyone else is probably feeling a similar anxiety about the prospect of a new year and new outlook, I’m just willing to vocalise it! 😉