The Gratitude Challenge

It’s the last day of the 30 days of gratitude challenge! The point of the challenge was to acknowledge the things and people which make our lives brighter, and also to realise that we have lots of things to be grateful for. I’m grateful for this challenge for those reasons, but also in a different way.

I don’t let myself get upset about things for very long. I come up with a plan (hence my blog name) and ‘get on with it’. Which is all very well and good, but, actually, it’s ok to be upset about unfair things in life. Taking part in this challenge made me take stock of my current situation and made me realise that while there are still many lovely things I can be grateful for, I have lost a lot. To quote one of the doctors treating me: I know I’ve lost a lot, but I didn’t *know* I’d lost a lot. I dealt with scary situations ‘too well’ and ‘got on with it’. Now I feel like I *know* those things. (which is a good thing)

Writing about the things that I already felt grateful for in a way which explained them to other people let me see everything from a different perspective. Coming up with the things I was grateful for wasn’t hard, I do that anyway, like I wrote about in this post. But explaining why I’m grateful for what might be quite simple things to other people was the challenge for me. It let my brain catch up with what’s happened. And for that I’m grateful.

I really liked reading other people’s posts because it was lovely seeing my twitter feed filled with positives rather than rants about Brexit, the NHS debate and the US election! It also gave me more insight into some of the people behind the blogs I already follow, and introduced me to new blogs. I look forward to the next challenge!

Sleep

I haven’t slept properly for over 2 years. I know some of you with children are probably thinking ‘join the club!’ but it’s not entirely the same. 

The body’s natural or circadian rhythm starts to boot up at about 3am ish, getting everything ready for when you need to get up in the morning. Part of that is cortisol production, which I don’t make. Cortisol is the body’s stress hormone, and you need it to survive. So instead of staying asleep and letting it do its thing in the background, my body wakes me up thinking that there’s something seriously wrong. Then it doesn’t always let me go back to sleep. Which is a problem, since getting sufficienct sleep and rest is really important for everyone, but especially with chronic illness. This happens to lots of patients with adrenal insufficiency. In other countries, endocrinologists recommend taking doses of their cortisol replacement at 3am to counteract this, but this doesn’t seem to be typical in the U.K.

I used to wake up feeling like I’d been shocked and feeling like I was about to be sick. I’d usually have sweated  through my clothes and feel really dizzy and shaking. It’s not pleasant waking up like that, but it happened nearly every night. Then it was usually 4 or 5am before I could go back to sleep, if I went back to sleep. Some days I’d be awake until I went to bed again the next night. It doesn’t matter what time of night I go to bed, it’s always the same time. 

The good news for me is that my baseline was increased again a couple of weeks ago, so it’s now 15mg/10mg/5mg. This means that even though I’m still taking my doses in daytime hours, I’m not running on fumes by the time I get to 3am, there’s still a tiny bit of fuel left in the tank. I still wake up every night around 3am (it’s usually 2.41am to be exact), but I’m not waking up feeling quite so terrible and I can quite often go back to sleep sooner. I’m still not sleeping through the night and I’m still really tired, but it’s a positive change. 🙂 

My Body

Day 29 of the 30 days of gratitude challenge is my body. I laughed when I saw today’s theme. Not in a bitter way, but because it’s something I joke about a lot.

My body is really frustrating. It’s double the weight it was 2 years ago (literally), I don’t think any of it is symptom free, and it does the exact opposite of what it’s meant to. O2 sats dropping and a wheeze? Endocrine not asthma. Silent chest? Asthma not endocrine. My blood sugars go down when they’re supposed to go up, and vice versa. Adrenal Insufficiency is typically recognised by a sudden drop in BP, mine goes up instead (as do some other people’s). In my case, if it looks like a duck and quacks like a duck, it’s probably a giraffe.

Having said that, it’s also quite clever. It was supposed to have died a few times, and didn’t. For example, the last day I went to work, I had to do a routine random cortisol blood test in the morning before I went in. I then taught four year 7 classes, ran a lunchtime club and taught GCSE music after school (a pretty full on day). The next day I felt ill so I didn’t go to work, and got woken up by my GP ringing me when the test results came back, telling me I needed to go to GPAU at the hospital *right now*. The blood test from the day before came back as ‘undetectable’ for cortisol, which means ‘you’re probably dead or in a coma’. Normal for that time of day would be 400. I managed to teach a full day with my bloodwork like that- that’s pretty good going!

I hate the fact that I’ve put on so much weight, because I love(d) sports and exercise and now can’t do those anymore. I could write a long list of things my body makes me put up with every day. I have pre-osteoporosis, so my Grandma probably has better bones than me. But at the end of the day, I can’t hate something which is still functioning despite all its flaws, and for that I’m very grateful!

 

Week 9: 30 foods before 30

Here’s how I got on in week 9 on my 30 foods before 30 list. 

29. Jerk chicken 

We went out for my husband’s birthday to a Caribbean restaurant, Turtle Bay, and jerk chicken was all over the menu. So I picked a half chicken with jerk flavouring and it was really, really good. I had it with sweet potato fries which was number 30. 

I also had rum cake which deserves a mention because it was really good! I can’t have alcohol (cooked alcohol is fine) so it was a really nice change! 

Banner image: google image 

My past

Day 27 of the 30 days of gratitude challenge is my past. Something which I definitely took for granted at the time, along with the majority of the population, was my education.

Not everyone in the world has access to an education up to 18 years old, it isn’t always free and it’s not always available to girls. So the fact that I had a full school education is something to be grateful for.

On the whole, I had caring teachers and a good school life. Having been a teacher, I can see how easy it would be to walk out of my classroom on the bell and sit in the staff room at breaks, and refuse to deal with anything that doesn’t involve actual lessons. But lots of my teachers didn’t do that, if we were interested or had problems, they made themselves available. As tiring and as stressful as being a teacher was, I tried to make sure I was always around when I was needed. 

I was allowed to study the things I found interesting. Today STEM subjects are favoured by our government and arts subjects and languages are seen as a ‘waste of time’. How sad. 

I had the chance to go to university. I learnt more than a subject while there, it taught me a lot about living, friendships, living by myself and all the boring things which come with being a grown up. But at least I had housemates to commiserate about these things  with rather than being thrown in at the deep end by myself! 

Having worked in challenging schools, I can see how easily influenced pupils are. Even really well intentioned pupils can find themselves on the ‘wrong path’. I don’t know whether it was my doing or my teachers’ guidance, but I stayed on the ‘right’ one. 

Life Lessons

Day 28 of the 30 days of gratitude is life lessons. I wrote a post similar to this for the blog every day in May challenge, so I’m concentrating on more recent life lessons.

– I’ve learnt who my real friends are. It wasn’t a nice process to go through, to realise that 90% of my ‘friends’ seemed to think that friendship should only work one way- in their favour- but now I’m really grateful for the 10% of friends who stuck around.

– Doctors can be very clever people, but they’re not always right.

– good doctors and nurses are like gold dust. Keep hold of those ones!

– my gut instincts are good.

– human bodies are actually really clever things. They do so much we don’t even realise half the time, and most people still treat theirs worse than their car or a pet. You only have one body, when it breaks you can’t replace it.

– having the best job, family, car, Facebook profile…. whatever people ‘compete’ over, isn’t the be all and end all.

– people formulate their own opinions and most are unwilling to change them, despite explanations and attempts. That’s their own stuff or insecurities.

– I don’t have to waste my energy on people who don’t care about me. This sounds really harsh, but it’s not. I’m not rude about it, but I’ve stopped making the effort with some people.

-it’s great to look forward to the big things like holidays and life events. But there’s a lot of time that goes by in between that we shouldn’t be wishing away.

My Hidden Talent

Day 26 of the 30 days of gratitude challenge is my hidden talent. There are a few things I’m ‘good at’, which I’ve written posts about as part of the my loves of my life and my projects entries in this challenge. But not many people know that I have really good empathy, which I think is a really useful attribute to have.

Empathy means being able to feel what someone else is feeling, putting yourself in their shoes. I wrote a post about chronic illness where I said I don’t like hearing ‘it could be worse’ statements in relation to my illness, and my empathy-ometer is why. Whenever I feel or experience something, I scan through what other people might be experiencing in the world and contextualise my problem against a whole range of other ones. So I spend a lot of time feeling guilty if I’m having a down day, because I’m thinking about people who are homeless in Africa (for example) and how they have it worse and I should just ‘get on with it’. Therefore, I don’t need to hear ‘it could be worse’- I’ve already been there in my head. I’ve been working on acknowledging that it’s ok to have days where I do nothing and rest because that’s what I need to do, and to ignore my empathy gauge on those days.

I also find it really hard to watch violent or horror films. Blood and gore doesn’t bother me, but I feel whatever the people who are being attacked are likely to feel. So if someone is running away from a murderer, I feel a similar level of anxiety. I hate sci-fi films where someone has to sacrifice themselves to save the planet because I feel what that must feel like. If you combine that with the fact that my body doesn’t respond well to stress, it’s not a good mix!

But having empathy like that has its advantages. I can really easily work out what someone else is feeling and why. This was really useful as a teacher because I could work out the pupils who were naughty and the ones who were in a bad place and needed help, and then work out what help would benefit them. I knew when to apply pressure and when to back off. I could recognise when a pupil was acting out of character and help them work through their feelings before they got out of hand. It’s not always about talking things through, sometimes it’s knowing about when to stay silent and wait, or talk about other topics. I could also tell when pupils were lying, which they hated, but was very useful! Adults are particularly interesting to watch because they try to manipulate and change situations more than children do, for both selfish and non-selfish reasons.

I haven’t got any science behind it, I just like watching people and I get a feeling about things. I don’t always let on that I’ve worked something out about a person (I’m pretty good at working out if women are pregnant!), because if someone has news to share it’s their news not my guessing that’s important.

Memories

Day 25 of the 30 days of gratitude challenge is memories. 2016 has been a bad year for making memories in general for me. I left my career in teaching, I’ve spent more time in hospital than ever before, my niece died… There’s plenty more, but that’s not the point of this blog. Aside from the horrible things, I’m really struggling to remember the good things because my memory is really poor at the moment. However, another blogger wrote about how she’s made a happiness jar full of good things that happen, which she writes on pieces of paper and adds to it throughout the year. I think I might start this, not necessarily as an annual thing like she does, but so that when I’m feeling a bit fed up about everything I can remind myself of the good or funny things which do happen. Nice suggestion, Nikki! 🙂

A memory I do like to think about is when my husband and I were in Death Valley on Honeymoon last year. We spent a couple of hours in the evening/nighttime star gazing. There were sun loungers on the terrace outside our room, which is a bit ironic because there’s no way you’d want to be sunbathing in Death Valley when the sun’s up- you’d fry. But the temperature at nighttime was lovely and warm, the animals and insects were out in the desert below which you could hear, and the sky was really clear. You could see every star in the sky as it’s a protected Dark Zone. It was really peaceful and relaxing. There were other people doing the same thing, but no one was really talking, everyone was just taking in the atmosphere. In a city, it’s easy to forget the enormous-ness of the world, and even in countryside, there are still trees and mountains which ‘get in the way’ of your line of sight. Here, the whole sky opened up and it made me have a different kind of respect for the different parts of the world and how we only ever see a tiny part of it, no matter how well traveled or broad our horizons might be. Even though we didn’t actively do an awful lot in Death Valley, it was one of the highlights of the trip for this reason. I loved other bits of the trip as well, and they’re also great memories, but I particularly like this memory because of the way it made me feel settled at the time.

 

Seasons

Day 24 of the 30 days of gratitude challenge is seasons. A few years ago, I would have said my favourites were summer and winter. I love long summer days and twilights, and the fact that it’s warm and sunny and everything looks and feels so much better when it’s sunny. But I also like cold, frosty weather and the way everything looks when it’s crisp outside. 

Now I hate both because they cause me no end of problems healthwise for lots of reasons I can’t be bothered getting into. So my favourites now are spring and autumn. 

Spring is the start of everything growing again, it’s like waking up from a deep sleep. Autumn is the opposite. But both have lovely colours and varied weather. Plus I can go out in a t-shirt without feeeling like I’m overheating, like in summer, or getting odd looks because it’s -10 and I’m still saying I’m hot. 

Health vs M.O.T

Picture this. You’ve got a really rubbish car, the dealer cheated you and you’ve got left with something which breaks down every couple of weeks. Except, every time it’s a different problem, so you take it to the same mechanic who fixed it for you last time and for some reason they say ‘no, sorry. I can’t help, you have to take it to the bloke down the road, he’s an expert in it‘. But you used the little life the car had left in it to get it to the first mechanic, and you’re thinking ‘holy crap, why can’t this guy fix it for me, he fixed it last time, how the hell am I going to get it to the next mechanic?‘ So you manage somehow, and you get there and mechanic number 2 says ‘yeah I can fix it, I can see what the problem is, but it’s linked to the last problem you had, which I don’t know a lot about. Can you explain it for me please?‘ You look at him a bit blankly and then enter into an explanation which you’re hoping mechanic number 2 understands, but there’s a lot of technical words and you’re pretty sure you’ve missed some of the information out, and you don’t particularly want your engine to blow out when you’re doing 70mph on the motorway, so you need to get it right. There’s four potential replies mechanic number 2 can say to you:

1. ‘I’ve no idea what you’re talking about, wait until you get the paperwork from mechanic number 1, or go back and ask him to write it down properly.’
2. ‘I think I get what the problem is, does it sound like….? ‘ and he recounts a lot of right-sounding words which makes you both feel like you understand what’s going on.
3. ‘Yes, I know exactly what this is’ but he actually doesn’t have a clue and is just winging it and hoping for the best.
4. ‘yes I know exactly what this is’ and actually does know what it is and can help you.

He can’t fix it there and then anyway, you have to make an appointment. So you somehow have to get your car back home, use it in the week for what you need it for and then get it back to him at some point. I’m sure everyone’s had a moment where they’re squinting at their car as they start it, holding their breath and hoping that the engine kicks into life.

Now imagine that your car is a really, really bad car, and you keep having to repeat the scenario above and have had 20 mechanics (and counting) and have had to go up and down the chain for each one. You start to miss out bits which may or may not be relevant because you’re so confused as to what the problem might be, or you can’t remember what you’ve said to them all. There’s no option of changing mechanic, and all of them seem nice on the surface, so even if they were fobbing you off, you’d find it hard to work out until after. Realistically, you’d be changing the car by now.

That’s pretty much what it’s like being a ‘complex patient’. Except I am the car and the mechanics are the different healthcare professionals. And that doesn’t even factor in when I’ve had to call the RAC out for roadside assistance and the complications which follow with that.

It’s hard work. You get to a point, just like you do with a car, where you start thinking ‘do I really need to bother with this? Is it worth the effort?‘ Because you know that if you whack your car on a specific part of the dashboard, the electrics will work again for a while. Or in my case, for example, I can put up with my heart missing out and adding in beats because I know if I hold my breath for 30 seconds it falls back into a normal rhythm. At some point you know you should figure out what’s going on with that specific bit, but the biggest problem is the massive hole in your petrol tank which is leaking fuel everywhere, so that needs dealing with first.

There are a few things I wish my doctors knew when dealing with all of the separate problems:

• It’s stressful being the ‘go between’. It’s a lot of pressure to remember things. And I have no idea what’s relevant and what’s not, so they either need to make time to hear the whole lot or ask pertinent questions.
• It’s exhausting. Your patience and resolve starts to wear thin. You keep getting told ‘the next person will help you’ and it feels like that person never comes.
• I’m not a doctor. I might know a lot about certain bits, but that isn’t an invitation to deliver information in the same vein as if I were a doctor, and I also shouldn’t be held responsible if I’ve misunderstood something. It’s down to the doctors to make sure I can understand.
• It would be really, really great if people read the information given to them beforehand in my notes. I get that the NHS is overworked and underpaid, but I’m also overworked, just in a ‘I’m sick’ way.
• Sometimes, people see you as a bunch of separate conditions and you become ‘not their problem’. But I am a whole person- you wouldn’t like it if one mechanic sprayed half your car in one colour of spray paint and another one chose a different colour. That’s what it feels like, sometimes, when people start separating out the illnesses in me and concentrating solely on their area of expertise.

Cars have the bonus of having MOTs, where someone looks over the whole car and makes sure that it’s running safely. In theory, this is the role of the GP. Except in my case, it’s like a Ferrari showing up at your local garage for an MOT- they could do it if they got the manual out, but everyone’s a bit too scared to touch it in case they do something to make it run badly. (I’m clearly not a Ferrari!)

I don’t want to be written off, but it can sometimes feel like it when time is short in an appointment. It’s always nice if the garage has time to valet your car for you, or, in my case, if Doctors check how I’m dealing with everything going on emotionally. You feel you’ve had good customer service if the garage rings you after a couple of weeks, to make sure the car’s still working well for you.

There are good mechanics and bad mechanics, just like there are good HCPs and not so good ones. But cars can recycle elements of their chassis if things go wrong, it’s not as easy to do that in people. Which makes finding the right mechanic who won’t fob you off even more important.