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 😉

 

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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! 😉

Christmas Concert & a Trip to A&e

I used to love concert days as a teacher. They were usually pretty stressful, but what Concert day isn’t stressful somehow? I liked the busy-ness, the challenge of it, seeing the months of work coming together, kids being proud of themselves… concert days is one of the reasons I became a music teacher.

Concert days look a bit different now. In fact, I don’t really do them because I can’t play or sing anymore. I limit myself to one a year, where I do the sound desk for my husband’s choir he’s part of. And even then I have people doing all of the manual or even remotely physical stuff eg walking backwards and forwards, moving things. I must look really lazy to anyone who doesn’t know what’s going on, particularly when I ask someone to walk over and move something which I’m already standing next to! Every bit of cumulative activity counts towards lowering cortisol unnecessarily. But I like doing it.

My energy- cortisol – comes from my medication. I don’t make any myself, and everyone needs cortisol to survive. Cortisol is your stress hormone. Hence why stressful concert days don’t go down well with me, even though I really like doing them! Usually I take medication 3 times a day. To even remotely manage the Concert day the other day, this was my dosing schedule:

Which meant a 3am wake up for some meds, and contingency built in brackets in case I was really struggling. Which I needed. It also meant my phone being on loud with alarms, despite me telling the choir they couldn’t do this- again, another hypocritical move!

Like with any Concert day, things don’t go to plan. People were late, some equipment didn’t work, I had to shout a couple of times (really screws me up), the sound desk decided to get a software fault which I couldn’t fix so had to botch some stuff together last minute, we sound checked without the projector being on because it was causing feedback into a mic but someone then decided to ignore this and turn it on early for the concert anyway, someone moved all my channels to zero in the interval so I had to hastily try and reset it… Things happen. Most people’s bodies make cortisol to get them over the stress. Mine doesn’t. I couldn’t include all these unpredictable, cumulative stressors into my schedule though and that was a lot extra to deal with.

I’d already been ill before the concert started but I’m stubborn. I miss music and my teaching job and doing concerts. I didn’t want to let anyone down. And I’d felt worse before and done more so I was just ‘getting on with it’. Except there are a couple of non-negotiables which come with adrenal insufficiency and one of those is vomiting. I haven’t been sick since I was diagnosed so I don’t know what my tolerance to it is. So when I was nearly sick in the middle of the 12 days of Christmas, I knew I was done for the night.

Thank goodness it’s a long song! I think I got to about the 4th day of Christmas when I left the desk. Before the song ended, me and my nurse friend managed to have a conversation about how it was weird for me to be sick, whether or not I should go to hospital, find someone to take me to hospital, find a car, tell my husband what was going on and also draw up and give me my emergency injection. That’s pretty good going!

My husband couldn’t take me because me and him were the only ones who knew exactly what sound equipment we had there and he was the one with a borrowed car to transport it. So me and my very pregnant friend headed off to hospital.

It turned out to be a bit of an adventure. 3 other people have the same car as the one we were trying to borrow, so we tried to essentially break into a different car in the car park. Until we realised that the flashing unlock lights were coming from somewhere else. Oops.

Once we’d found the right car, we realised that she hadn’t driven a manual car for 5 years since hers is automatic, and she was also trying to get used to using a clutch again with a bump in the way. It was a good distraction actually since it was pretty funny! Then we realised that most people would assume we’d turned up to hospital because she was in labor rather than for me being ill, so decided to take bets on seeing how often that might come up. It didn’t come up as much as we thought though which was disappointing!

Once we got to a&e it all happened a bit backwards. Actual triage was quite quiet but ambulance triage was horrendous and the trauma alert went off while we were there. I usually get triaged quickly, which happened, and then reviewed by a consultant once in a cubicle, again which happens quite quickly. Except there weren’t any cubicles since half of the patients for ambulance triage were still in ambulances outside. But I did see a consultant at triage which is really unusual. So I was pretty confused and not really with it enough to work out whether I needed to be cannulated yet or not since I’d had the HC IM which is usually why I get cannulated. It’s sometimes difficult for us AI patients to work out if you’re being taken seriously because they understand your condition or not. It turns out that they did understand and a plan was in place. It just was backwards to my usual experience because of what was going on in ambulance triage.

After a few more hours, some blood tests and a chat with a pretty good SHO I was free to go. Hooray! It was put down to having to come off my oral HC for my tests I had the last few weeks messing with my system, and overdoing it for the concert. No infection or underlying cause, which is good. Better to be safe than sorry, but I had to go to a&e anyway because I’d done my injection and that’s standard protocol- you need obs at the very least after having that medication.

After sleeping for 3 days, double dosing and taking it easy I hopefully should be back to my version of ‘normal’ soon. Just 2 weeks of hellish tapering to come though!

Insulin Resistance & Reactive Hypoglycaemia

I saw a different endo last week, which was mostly preparation for the synacthen test I had this week. However, we did talk about the hypos (low blood sugar episodes) I've been having, and I got diagnosed with something else; reactive hypoglycaemia.

A hypo isn't pleasant. When I have them, I feel shaky, sweaty, confused, have poor concentration, dizzy, and have a headache. Too low a blood sugar is dangerous, so needs to be treated so you don't become acutely ill.

The consultant actually diagnosed me with an 'abnormal phase 1 lag release' (whatever that is!). But that's a bit of a mouthful! I already have insulin resistance, which means my body needs a bit of persuading to make insulin, and then when it does it floods my system with it. But having reactive hypoglycaemia means that my blood sugar level gets pushed down by the excess insulin and I have a hypo, or something that feels like a hypo because my body doesn't know if it's coming or going.

Still following? If so, well done! It was at this stage of the explanation that I really wished I'd paid more attention in biology at school. Reactive hypoglycaemia also means that when I eat, my blood sugar goes up a tiny bit and then down a lot, rather than up a lot (ish) and down a bit like most people's do. I've been telling doctors this for about 18 months and they've all been telling me 'that's not right' or 'you're reading it wrong' but the professor in endocrinology I saw last week didn't flinch when I said it and knew exactly what was going on, so it can't be that weird!

This actually explains my 'I need to eat' feeling I get and why I need to eat seemingly constantly, even overnight. I eat something, insulin isn't used the way it's meant to, my blood sugar goes down and I feel hypo-ish so I need to eat to get my blood sugar to go up a bit and the cycle starts again. So really, when I feel hypo, it's because of what I've eaten a few hours ago because my body has a lag or delay. Which is a tad hard to predict!

Just to complicate things further, hypos are also really bad for Adrenal insufficiency, and hypo is one of the onset of crisis symptoms. It's been pretty entertaining trying to guess whether I need sugar, carbs or more hydrocortisone during these episodes!

My consultant's exact words were 'think and eat like a sheep- graze little and often'. Which made me laugh- a consultant with a sense of humour! Rather than 3 meals a day, I should be eating more like 6 or 7 smaller meals, made up of low or complex carbs (low GI). I've essentially been eating the right foods but the dieticians and my other endo told me to aim for 3 meals a day. So I did and it was hard. I'm hoping this might work better and I won't feel so much like I'm on a rollercoaster blood sugar wise.

I never have high blood sugar, my over producing insulin (albeit with a lag) takes care of that. I need to do some more reading about it and, from what my consultant said, it's not easy to work out and will be a lot of trial and error. But it feels like some progress after I've been hitting brick walls for almost 3 years with this.

What ‘I’m Tired’ means to me

There’s a difference between normal tired and chronically ill tired, but it’s hard to appreciate until you’ve experienced it. And even with different chronic illnesses, there’s different levels of what tired means to different people. I don’t have a point at any time of day where I don’t feel exhausted. I don’t feel better after having slept or napped. I wake up shattered and have periods where I get more shattered, but I never get any respite from being fatigued and exhausted. Which in itself is mentally exhausting! On some days, I could sleep for 23 hours out of 24 and not feel any better for it. I clearly can’t hibernate for all of my life though…

Lots of people genuinely seem to want to know what it feels like and have asked about it. So here’s some activities or feelings which are similar to the level of fatigue I feel on a normal day which other people might have experienced: 

  • Jet lag. Like across the world jet lag with a 7 hour time difference the ‘wrong way’.
  • After having had a severe stomach bug where you’re recovered and kind of eating but still feel really weak and ‘floppy’. Where standing up for a minute takes it out of you.
  • Staying 10 minutes longer than you wanted to in a sauna.
  • Going to run a marathon with no training and not being allowed to walk.
  • Having flu, the type with a high temperature so you feel out of it and hot and cold chills so that breathing feels like too much effort.
  • Not having slept for 48 hours and having to sit an exam.
  • When your brain feels frazzled because you’ve put up with constant noise for hours on end.
  • Trying to listen to a pool-side conversation while you’re underwater holding your breath. 
  • Having to carry a really heavy, giant box around all the time and not being allowed to put it down ever. 
  • Walking or wading through swamp land or thick mud 
  • Trying to go against the flow in a packed crowd. With your heavy box you can’t put down.
  • Being pulled by a current in the sea.
  • Being desperate for the toilet all day, not having eaten all day and having completed a full day at work with a banging headache and people interrupting what you’re doing every 5 seconds.
  • Rock climbing or climbing a mountain with no training in 30 degree heat.
  • The type of hangover where you can’t move even a little bit and you feel like you’re dying. 
  • Banging your head on something and the moment immediately after where the room is spinning and everything feels like it’s drained from your body. 

So because my version of ‘normal’ is most people’s idea of being unable to function, when I say ‘I’m tired’, it means ‘that’s it, I’m done, I need to sit down or sleep *right now* otherwise something bad will happen’. I don’t have ‘a little bit more’ or ‘just a bit further’ left in me, because I didn’t have that to start off with! And also, I can have my ‘normal’ level one minute and then literally plummet to zero in a matter of seconds. I think that’s the bit that’s tricky for people to empathise with, because most people do have a little bit extra energy-wise in reserve which they can access if they need to, even if it does mean digging deep. And the tired feeling doesn’t hit them as hard like a smack in the face- it’s a more gradual decline. 

You get used to functioning with what you have. It’s actually pretty easy to look and act as tired as you feel, the real skill is looking ‘alright’ even when you feel like you’re dying 😉 

Harry Potter in Concert

The Royal Philharmonic Concert Orchestra is currently touring the UK performing the Harry Potter and the Philospher’s Stone film score live at the same time as the film is played. I’m a massive Harry Potter fan and particularly love the Harry Potter film music, so I loved it! 


We went to see it in the Albert Hall. There were performances closer to us, but I incorporated it into part of my 30 things list and I thought the atmosphere would be amazing. And it was. It was a great mix of people- film lovers, orchestra fans, Harry Potter geeks dressed in robes, children… it was really good fun. And audience participation was encouraged! 

I studied conducting at university, but never did any film or screen conducting. I found it interesting to watch it being performed live with the film, because it obviously has to be really precise, but usually when the film score is recorded, it’s done with cues and times. This conductor must have really internalised his score and the film to be able to get it so spot on in front of a live audience. Incredible. And the musicians were amazing too. An entire film score, especially the length of a Harry Potter one, is a lot of playing to do in one concert! 


There was also a choir with wordless parts throughout. You know their bits exist when watching the film, but because it was live their parts added more depth to the soundtrack. In fact, in general there was more depth to the music, especially in the lower brass. I guess it’s partly because I haven’t watched the first HP film on a large screen since it originally was released and the sound gets compressed a lot when it gets turned into a DVD. I also noticed a lot more of the musical devices used and our perception of some of the characters was different, which was interesting! All because the music was played live and more of a focus rather than in the background. 

I think my favourite bit was actually the credits because they played them in their entirety and people stayed in their seats and listened unlike at the cinema. The orchestra played all of the themes we’d listened to for the last few hours and it just rounded it off nicely. And also got a really loud round of applause. 

It was a great day out. We managed to get street parking right outside the Albert Hall (£14 ish for 4 hours), and the congestion charge doesn’t apply on weekends. Because I’m not up to walking far, we decided to have lunch in the Italian restaurant at the Albert Hall, which was a bit of a gamble because we hadn’t reserved and it could have been ridiculously expensive, but it turned out to be really reasonably priced and a nice meal. Plus we didn’t have to rush because we were already at the venue. I’ve only been to the Albert Hall once before so I loved being in such a historic venue. The same orchestra are performing the Chamber of Secrets next year so I’m tempted to see that too! 

Banner photo: taken from the Albert Hall box office 

Identity

If you had to describe your identity in one word, what would you use? I did a bit of an experiment and most people used a noun rather than an adjective. E.g. I’m a mother or I’m a teacher. Which got me thinking, what’s my identity?

I’m not a mother, I’m not a typical wife. I’m not a student. I’m not part of a particular religion enough that I can say that’s my identity. I’m not a teacher or musician anymore and I can’t say I’m a sportsperson. I suppose I could call myself a knitter. There’s lots of things I’m not, but what am I? It reminds me of the game ‘Guess Who?’ where I’m flipping down the people, working out what I’m not, so hopefully it’ll reveal who I am. Hopefully not some bald, old guy with glasses! 😉

Identity is important, it’s what you associate yourself to be. It gives you purpose and makes you feel like you belong. Most people choose their identity to an extent, but my identities and my future ones have currently been taken away from me. People change and identities evolve but most people can shape them into an identity that suits them, or they move from one identity to another e.g. from being a student to a profession. It’s different having something forced on you, like through illness or something like redundancy, or indeed if you feel like you can’t ‘get out’ of a perceived negative identity e.g. Drug dealer.

I refuse to have my identity as a ‘person with a chronic illness’, which is where a lot of other people seem to want to ‘put’ me identity-wise. Mostly because I don’t like to be told I’m ‘inspirational’ because I got out of bed that day (which has happened). That’s not inspirational, by all means call me inspirational, but for something that’s actually inspiring! Not just because I exist with a chronic illness- my charming and cheery disposition while being admitted to a&e, for example (it’s a line from Mary Poppins, before anyone thinks I’m being big headed 😉 ). There’s lots of memes that say ‘don’t let your illness define you’ and equally there’s a lot of people who say that they’re proud to have their chronic illness define them because it’s a big part of their life. I have a chronic illness, but that’s not my identity. I want to be known for other things as well as it. I see it the same as saying ‘I’m female’ or ‘I’m nearly 30’- it’s a fact, the nature of it impacts on my life in the same way other factual things do, but it’s not a characteristic of me, even if it takes up a lot of my time.

I think that’s the point lots of people miss when it comes to identity, me included- characteristics or traits. Our identity is culturally something that we can constantly identify with. So someone is always considered a mother, or a teacher even if they’re not physically in that role at the time. Which is weird that we want to demonstrate our identity with a noun, when we could choose an adjective instead. People might not be consistently the same adjective, but then they weren’t when they were labelling themselves as ‘a something’ either. This works better for people like me, who can’t ‘be something’ in the same way as everyone else.

So what am I? I like to think of myself as kind, empathetic, resilient, creative, friendly and enthusiastic. I might not be all of those things all of the time, I’m most definitely moody, stubborn and grumpy a lot too! But my identity isn’t then linked to my career or ‘purpose’ in life, it’s driven by the type of person I want to be. It allows me to think that I can choose what characteristics I can be. I’m not supposed to act in a certain way because ‘other teachers do’ (or whatever). I can change or add in new ‘identities’ as and when things change. You can identify yourself as a doctor or a performer, but it’s the qualities of the individual which make up the profession, not the other way around. I can’t identify with a profession, but I can choose what characteristics I want to nurture in me and make my identity that way. I can (and do) choose a positive identity, rather than a twisted, evil, or bitter one.

A noun seems quite fixed in terms of identity. An adjective seems a bit more free and unpredictable. Life isn’t predictable so I don’t see why something as important as identity should be seen as something so permanent or why people should feel the need to conform to one. There’s a great bit in the Jungle Book that I love, where Mowgli is fighting the tiger and Bagheera says to him ‘why are you trying to fight him like a wolf? You’re not a wolf, you’re a man, fight him like a man’. Mowgli had tried to fit in as a wolf all of his life, but it was human skills which saved them, despite the fact he’d tried really hard to develop his identity as a wolf. I might become ‘a something’ again at some point in the future, but for now I’m going to cultivate skills and attributes I want to have as part of my identity rather than trying to find the closest noun/profession/person which vaguely fits.

Looking After Mental Health

Maintaining mental health is a lot like looking after your physical health. In the same way that you can’t go to the gym once and come out looking like a Greek God/Goddess in terms of physique, you can’t do one lot of meditation and suddenly be cured of depression or anxiety. It seems quite obvious when you compare it to physicality, but the problem with mental health is that you don’t always realise it’s becoming a bigger problem until you’re stuck in a cycle. At least with physical health, you can see changes or you can measure it somehow.

Lots of people decide that they want to lose weight for their wedding or a special event and complete a burst of gym training or crash dieting to get there. Sometimes it works and they get the results they want for their event, sometimes it doesn’t and they get halfway and other times they can’t maintain it at all. A lot of the time, people who crash diet or focus purely on the event in mind don’t maintain their physical health afterwards. It’s great to have a goal or a target to work towards, but it’s healthier to incorporate it into your daily life than to do it in fits and bursts when there’s an event on the horizon. Why? Because if you work so hard to get the weight off or to be able to run a marathon, when you try to start up again after a break it feels doubly as hard. And you’re thinking ‘I could do this a year ago, why can’t I now?’. Rather than improving on what you had before, you have to start again and it’s demoralising, which means you’re more likely to give up than you were the first time around.

Mental health is the same. If you only practise self care or meditation or compassionate thoughts when you’re mentally struggling, it doesn’t work very well. It needs to be embedded into your routine so that you’re not fighting with your low mood and trying to adopt a new way of thinking at the same time, because it’s overwhelming. And you’ll probably end up thinking ‘this is stupid, it’s not working, I don’t feel better, so I’m not doing it anymore’. However, the problem with mental health is that it’s difficult to do a lot of the practices like CBT or reframing when you’re feeling ‘alright’, because you don’t feel the need to do them. You also feel a bit like you’re wasting your time dedicating it to some ‘stupid’ therapy which you don’t need at that second.

For me, I knew that I needed to set things up for when I was having bad days because of the amount of time I spent working with pupils who had mental health problems. Hence my star jar and happy photos in my phone. My problem was that when I got really stuck in a cycle is that I would forget that I had these things set up and not do them. Or I found CBT made me more anxious partly because my brain fog meant I couldn’t remember the process and I beat myself up about it, but also because I don’t necessarily have the physiological chemical response to it that makes you feel better for having done it- rationally I could tell you if I was looking for catastrophes that didn’t exist or fortune telling or projecting negative emotions, but I wouldn’t feel any better. Plus I’d promptly forget everything I’d rationalised out.

Someone who read this post recommended an app called Pacifica which has been really useful. It suggests activities to do depending on your mood, it takes you through it step by step, you can go back and look at things you’ve already gone over and it reminds you to check-in with yourself. This is exactly what I needed because my problem was never not being able to see my cycles, it was not having a clue how to get out of them and feeling overwhelmed by all the inner noise. I’ve not been using it long, but it means that hopefully I won’t be expecting myself to lose 10 stone of mental weight in a matter of minutes because I’ll have already established some kind of routine.

Phrases I Dislike About Chronic Illness

I’ve been spending a lot of time on social media at the moment, mostly because I’ve been having a lot of PJ days and forced rest. It’s quite easy to get sucked into clicking on hashtags and different Twitter users and some of the random things I’ve been coming across have been other people with chronic illnesses or chronic illness blogs. Some I find interesting to read, others I find a bit annoying. The same phrases seem to come up a lot, and they’re not ones I tend to use. I’m not saying other people shouldn’t use them, I’m explaining why I don’t like them.

‘This has ruined my life’

The most recent blog I read was called ‘Depression has ruined my life’. To me this sounds really drastic and final. It also suggests that whatever came before in your life isn’t noteworthy, even if it was, and sounds like you’re writing yourself off forever more and won’t achieve or do anything else. Our lives are what we make of them, and life is never uneventful for anyone (NB, I’m not saying ‘that’s life’ because that’s an equally annoying phrase!). Illness might not be fair and it can be bloody hard, but that doesn’t mean life suddenly has no meaning after diagnosis and is ruined. My point is, while we have an element of choice, even if our choices aren’t as broad as we want them to be, we can do something about whatever it is that might ‘ruin’ our lives. Life might not be what we planned, but we’ll get more out of it taking an alternative path than sitting down and declaring ‘this has ruined my life’. Depression might change someone’s life and can be really unfair (this is just an example by the way, not a passive aggressive dig), but, if you think about it, we’re not born into a rainbow and unicorn filled perfect world with a pre-destined path lined up for us. There are, of course, exceptions- some illnesses have drastic and final consequences.

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I saw this photo on Facebook and it makes a lot of sense. If you compare your life to the perfect one you planned out, it’s never going to live up to your expectations.

Someone said to me once ‘I hope my child doesn’t have asthma because I don’t want it to ruin their life like it has yours’. Excuse me? She made it sound like a death sentence if her child was asthmatic. At that point, I was really healthy and could run 10k. Even when my asthma was uncontrolled, I wouldn’t have said it ruined my life. I asked her what she meant and she said because I required daily medication and needed to manage it it had ruined my life and was holding me back. I obviously disagreed- holding me back from what? Daily medication isn’t that big a deal. I wonder what that same person would say now I’ve got Adrenal Insufficiency!

‘I suffer with….’ or ‘ X suffers with…’

True suffering is rare in this country. Famine, war, poverty, abuse, terminal illness are all things some people suffer, but the majority of us won’t. However, suffering is relative to what you’ve experienced previously. So someone who has only had colds in the past will feel like the flu is the worst suffering ever. But the thing with suffering, is it’s partly the way we perceive it that tells us how much we suffer from something- the thing itself might not be ‘that bad’. If you’ve got a bad back and you spend all your time going round and round in your head about how much it hurts and saying how it’s ruined your life, you’re going to suffer a lot. If you acknowledge you have pain but don’t put yourself under so much mental stress, you will suffer less. The level of pain will be the same, but the amount of energy and suffering you place on it will be less. Why do you have to say ‘I suffer from asthma’ when you could just as easily say ‘I have asthma’? I have daily, unpleasant and debilitating symptoms but I wouldn’t say I’m constantly suffering. You get used to what you have to an extent and some days are worse than others.

For example, I really hate vomiting (most people do), but it can be really dangerous for someone with AI. When I felt sick, which happens a lot, I used to get myself in a massive panic about it, which made it worse and then made me dread the next time it happened even more. I worked out that if I got rid of the commentary in my head, I still felt sick, but I didn’t suffer as much or for as long.

‘Severe’

Some people with chronic illness have severe or serious versions of their illness. But some people with chronic illness add the word severe themselves, as in, it’s not a term given to them by their doctor. Again, this might be because of the ‘illness is relative’ point I made above- if everyone else around you has mild, seasonal asthma and you have a few asthma attacks a year, you asthma is more severe than theirs’. But it doesn’t mean you have ‘severe asthma’. However, I reckon the only reason people do this in the first place is because they’re trying to make the point that their condition is worse than someone else’s e.g because they desperately want someone to take them seriously rather than dismissing them or because everyone seems to have a habit of trying to ‘outdo’ each other and the person is trying to make the distinction between their condition and ‘normal’ conditions- and I can completely understand why it happens. For example, if I say I’m tired, someone nearly always says ‘oh yeah, me too.’ They might be tired, but their tiredness isn’t comparable to mine. If I were trying to make that point I might say ‘I have severe tiredness/fatigue’ to try and make the distinction. The problem is, this then means that people who do have severe versions of illness are put in the same category as people with less severe versions of the illness and have to find another way to make the distinction! Without realising it or intending to, it’s become some sort of competition. If someone tells me they’re tired too, I try to inwardly roll my eyes and let it drop rather than getting into some sort of debate.

‘Warrior’

I personally don’t like the word. Lots of people use it to refer to someone who has a chronic illness as a way of encouragement, and that’s up to them. I don’t like it because I think it causes a lot of pressure for one thing, but also because it brings out the competitive nature in people. If you’re having a bad day and you’re not soldering on, does that mean you’re not a warrior and you’ve failed? It shouldn’t, because everyone has bad days. But if you see other people being named ‘warrior’, it’s a hard label to live up to. How do you even get called a warrior anyway? What do you have to do? Is it the person who has the worst symptoms (or suffers the most) or the person who achieves the most despite illness? And then the competitiveness starts. Or is everyone who has a chronic illness a warrior? If so, why? I’m all for encouragement, but the word makes me uneasy. I think it’s because it implies that you’ve always got to be fighting your illness or disease. Sometimes it’s ok to not be ok.

‘Spoonie’ 

This word is huge in the chronic illness world. A woman developed the Spoon Theory to help explain how she manages chronic illness to a friend. She happened to have a lot of plastic spoons in front of her in the diner when she explained it, so it became known as the Spoon Theory, and people with chronic illnesses are known as Spoonies. It’s a good analogy, but it doesn’t work for every illness. It’s great to have a sense of community and to have other people to turn to, which is why it took off. Reluctantly, I occasionally use the hashtag on twitter, because it means I can find people who have similar illnesses to me. The reason I don’t like it is I haven’t worked out yet if it’s a word universally used or if it’s only used by people with chronic illness. If it’s used by disabled and non-disabled people to refer to those with chronic illness, then that’s fine. If it’s a word only used by disabled people and non-disabled people aren’t allowed to use it, that’s not fine. It’s a bit like when groups use  derogatory terms to refer to each other, but call other people from other groups racist/homophobic when they use the same word. It can’t be used in solidarity in one breath and considered an insult in another, is my view.

I probably spend more time than the average person thinking about words and phrases because I studied languages at university. I’m not saying any of these terms are wrong, I’ve just come across them a lot in my random trawling and thought I’d explain why I try to avoid them on my blog!