Permanently Exhausted Pigeon

I always see a meme doing the rounds on social media that says something like ‘I’m not an early bird or an night owl, I’m some form of permanently exhausted pigeon.’ This is probably one of those memes everyone can relate to to some extent. But honestly, I cannot emphasise how much this resembles my life at the moment.

In September I landed myself a new job. This was a huge deal for me: after months of drowning in job applications, keen to avoid landing a job in the education sector, I found something I could really get my teeth into. The only catch? It was full-time. And getting my body used to the rigours of full-time work would be perhaps the greatest challenge of all.

Fatigue is a real sucker. Unless you’ve experienced it, it’s incredibly hard to understand. I am one of these people who can sleep for 12 hours or more and still nap for several hours during the day. And no matter what, I am always tired.

It’s generally acknowledged by the medical community that individuals with cerebral palsy use between 3 to 5 times more energy carrying out daily tasks than those without. On an average day, I walk a good 25 minutes during my daily commute. I also make sure to take regular breaks at work, and will frequently get up and go for a little walk around the office when I can. By the time I’ve come home from work and done the usual bits and bobs around the house, I am wiped. Sometimes, I will push through and make a meal from scratch. Other days, I’ll bung something convenient into the oven, or Ben or my family will cook something for me. By 8 o’clock, I am considering getting into bed. I feel bad about this though, so I’ll usually give it til half ten and then consider going about my daily bedtime routine before finally settling down.

Once I am in bed, I tend to do a little bit of reading, before falling asleep ungracefully, probably with my mouth wide open, snoring for all the world to hear.

Next morning, my alarm goes off at 6.45 and the routine begins again.

I’ve had to have a serious talk with myself regarding reserving my energy and managing my pain. I am awful and stubborn when it comes to admitting I can’t take on the world, but living permanently exhausted is just not cutting it any more.

Pacing is something I genuinely want to work on. I need to banish those guilty thoughts and accept that I am not a superhuman. I need to schedule in early nights, make sure I eat good meals and regularly snack on healthy things during the day to keep me going. Most importantly, I need to work on accepting that this is something I can and will work on.

I am enjoying my job. It is the right thing for me right now. Working in an office means I can sit comfortably with a hot water bottle on my aching back, endless cups of tea, with a view of the city around me. I enjoy the satisfaction of seeing a project come together, matters complete and people satisfied and thankful when it’s all over. I enjoy working with people based all over the world and I am lucky to have very supportive, lovely colleagues who put up with my endless yawning and stretching at my desk. I just need to remember give my body and mind the attention it deserves at all times.

I write this whilst snuggling under my heated blanket. My spine has got it in for me today and I haven’t done anything particularly spectacular. But that’s okay. Because right now, this permanently exhausted pigeon is all that matters, and I am going to make sure I spend more of my time with that in mind.

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Pain, Pacing and Piggies

Today has been one of those days.

I woke up this morning feeling as if someone had beaten me up as I slept. I tentatively opened my eyes, grabbed for my glasses, struggled to pull myself up out of bed and slowly waddled into the living room.

I just knew how this day would turn out.

Drew handed me a coffee and I swallowed down three pills – codeine and celecoxib – sat on the sofa, and eagerly awaited some relief. I waited. I took out a guinea pig to cuddle (great therapy) and waited.

Nothing changed.

Days like these are frustrating.

The most frustrating thing about chronic pain is its unpredictability. Of course there’s particular activities that are bound to aggravate my back pain – and annoyingly standing/sitting too long is one such ‘activity’ – but sometimes the pain just comes out of nowhere.

I must admit though, I don’t always help myself.

For years I didn’t really face up to the pain issue. I’d do things without thinking and then suffer the consequences. I’d go out shopping in town all day and deal with the fact I’d be up all night in agony.

It didn’t occur to me then how destructive this was.

For some reason, I seemed content with punishing myself. I’d blame myself for having ’caused’ the pain, and then tell myself I had to deal with it. Although I’ve been prescribed analgesia since I was thirteen, I did anything to avoid using it. The pain was ‘my fault’ and ‘my problem’, and I wasn’t going to take the ‘easy’ option by taking some painkillers.

Incredibly destructive (and completely untrue).

I’m not sure when my attitude changed with regards to taking medication (although Drew will probably tell you I’m still incredibly stubborn when it comes to this) but one thing that hasn’t completely changed is pushing myself.
Let me explain.

Mistake #1

Yesterday I went into university and got out a couple of books from the library. I put these into my handbag, and decided to walk home.

Mistake #2

On the way home I pass lots of shops. I rang up Drew (I was feeling peckish) and asked if I needed to pick anything up. We needed milk, so I popped into a shop, grabbed a basket and some milk.

Mistake #3

There were so many things on offer I just couldn’t resist having a look and more and more items ended up in my basket. I got to the till, paid and walked out of the store feeling grateful for the wonder that is Heron Foods (and its vast selection of biscuits)

Mistake #4

I decide to walk the rest of the way home despite the fact I felt like my shoulder was being pulled out of the socket. I had bought far too much but I was already halfway there…besides, asking Drew to come and meet me would be a huge inconvenience.

Mistake #5

I continued to walk home whilst struggling – having to stop every couple of pages to catch my breath – and still this wasn’t ‘enough’ to ring Drew for a bit of assistance. I finally made it home, looking like I’d been dragged through a hedge backwards. Breathlessly, I rang the doorbell and stumbled through the front door, collapsed on the sofa and moaned about my throbbing spine.

Drew made sure to remind me how ridiculous I’d been.

This kind of thing happens far too often. I don’t know why I do this; I know it makes absolutely no sense at all, and of course I ended up paying for it for the rest of the day.

Pacing is a phrase banded around a lot in the spoonie community (see here) and consists of prioritising activities ensuring you don’t run out of energy by doing too much at once. I’m all too aware of this but I haven’t really grasped it yet.

I’m 22 and always want things done now.

It’s difficult to accept that sometimes things have to be done differently, and right now I feel like I’m taking one step forward and three steps back. I think that’s why I’m really struggling. I am trying to get better, but sometimes I really can’t help myself; I can’t shake the desire to be ‘normal’, to not worry about my every activity and how it’s going to affect me.

It’s such a vicious cycle, because my depression and anxiety fluctuates when I’m like this. I really really need to learn.

I’m currently curled up on the sofa wrapped up in a blanket, dosed up on codeine cuddling my guinea pigs and wondering when I’ll change my attitude for good and realise I need to look after myself a whole lot more.

I hope it’s soon.

Heather x

Easy Eats: Nutritious Snacks

Hello there, lovely reader. A while ago I mentioned I was going to start writing up some easy, spoonie-friendly recipes and ideas. For new readers (hi!) I actually have a form of cerebral palsy called mild hemiplegia and a painful spinal condition called scheuermann’s. My cerebral palsy limits coordination and movement in my affected side and can also be painful, and alongside my recent diagnoses of depression and anxiety these can be a tiring mix!

On painful and tired days it can be a real struggle to eat well, so I thought i’d share some tips with you.

When having a bad day I tend to snack because I can’t muster up the energy to create a really nutritious, home-cooked meal. Here’s a few snacks I’ve come up with to help me on tough days:

Homemade granola
This is a really yummy, super easy thing to make. I store it in a big Kilner jar *insert heart emoji here* and then just dig in when I feel like it. It’s fab for breakfast, but like most cereals it’s great to snack on when you’re feeling a little peckish.

What you need:
2 cups of porridge oats (make sure they’re the proper ones, not the ones that make instant porridge)
2-3 tbsps of honey or maple syrup (I used half and half)
2-3 tbsps of oil (I used rapeseed oil but melted coconut oil would also be lovely)
Pinch of salt
Any yummy additions you’d like to add including dried fruit, nuts or even chopped chocolate. I used very dark chocolate (80% I believe) for a really chocolatey hit

Method:
1.Turn on the oven to around gas mark 2/150°
2. Mix all the oats, syrup, oil and salt in a mixing bowl until well combined. If adding nuts, you can add them to the granola at this stage to get them all lovely and toasty.
3. Prepare a baking tray by covering in grease proof baking paper to prevent sticking.
4. Spread the mixture onto the tray and place in the oven.
5. Cook for around 40 mins to get the oats lovely and toasted and golden. However you must make sure you continue to check the granola at 10 minute intervals: it can burn very quickly so be sure to keep an eye on it.
6. Remove the tray from the oven and leave to cool completely.
7. Once cooled, feel free to mix in as many yummy additions as you’d like. There is no measuring needed here; it’s completely up to you!
8. Once well mixed, place into a clean jar or container and this will keep for a good couple of weeks…if you can bear to leave it of course!

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I love mine with plain natural yogurt and the addition of fresh fruit. Blueberries and raspberries are lovely in this.

Fresh zesty salsa
One of my favourite dips. When feeling like a snack it’s great with tortilla chips, but for a more substantial meal I love eating it with oven baked wedges made using chopped potatoes or sweet potatoes.

What you need:
A handful of cherry or plum tomatoes (whichever you prefer)
Half a fresh lemon or lime (again, whichever you prefer)
A spring onion
Pinch of salt
Pinch of black pepper
Half a teaspoon of sugar
Glug of olive oil
Fresh chilli if you like it hot

Method
The easiest way to do this is to use a small food processor or chopper. We have a brilliant little processor from Aldi and this is really useful if low on energy (or simply don’t want to chop everything by hand!) If you don’t have a processor or if you want a chunkier salsa feel free to chop by hand

1. Wash veggies and put them into the processor/chop up.
2. If using a food processor, gently pulse to get required texture.
3. Add salt, pepper, olive oil, lemon/lime juice, sugar and chopped chilli if using. Taste and adjust seasonings accordingly.
4. Serve alongside tortilla chips, potato wedges, or anything else that takes your fancy!

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Sometimes I add chopped coriander which is also lovely. Sorry for the rubbish photo: I simply couldn’t wait to get stuck in!

Easy Banana “ice cream”

I’m oh so late to the party with this, but it is a delicious sweet something when you want to have dessert but feel too bad about diving into the tub of Ben and Jerry’s at the back of the freezer. Yummy!

What you need:
1 chopped banana per person
Optional toppings/flavours. I like nutella, peanut butter or Sweet Freedom’s Choc Shot

Method
1. Peel and roughly chop the banana.
2. Place into a sandwich bag and pop in the freezer
3. Leave until fully frozen and solidified
4. Remove from freezer and let it thaw out slightly
Place in a food processor or chopper, and pulse the banana until thick and creamy. Swirl any additional flavours in at this stage.
5. Serve and add toppings!

To make this really healthy omit the nutella (it is full of sugar but great for a treat) and replace with a drizzle of honey, chopped frozen raspberries, almonds or anything else that takes your fancy!

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The above pictures are an example of the less-healthy version…though choc shot is low calorie!

I hope you’ve enjoyed this post. Be sure to watch out for some more easy recipes; there’s lots more I want to share with you. Meanwhile, look after yourself and happy Thursday!

Heather x

‘Spoons’ and ‘Easy Eats’

There’s a little analogy those of us with chronic illness and/or disabilities like to use to try and describe the difficulties living with chronic illness create. This is called the ‘Spoon Theory’, and you can read this (rather lengthy) post by Christine Miserando which – perhaps ironically – takes lots of ‘spoons’ to read and understand (see here).

In simple terms, the idea is that each day you’re allocated a certain number of ‘spoons’. These spoons = energy. When someone is chronically ill/disabled, they use far more energy than an able bodied person (and I recently found out people with cerebral palsy expend between 3-5 times MORE energy than someone without CP. No wonder I’m asleep a lot of the time!).

Thing is, when you’re ill/have difficulty coordinating your body, things become harder to do, and you end up having to prioritise some tasks over others. Getting out of bed and getting dressed/doing teeth might cost me one spoon on a good day. That leaves nine to complete the rest of the day’s tasks.

Getting to uni on the bus and having to stand because there’s no seat: one spoon. Sitting in a three-hour seminar: two spoons. Getting on the bus home: one spoon…and, well, you get the picture.

If I exert myself too much one day, I just know I’m going to regret it the next. And if that’s the case, I might wake up with eight spoons rather than ten.

This can make all manner of adulty-things difficult. Before occupational therapy came round and installed some things to help me around the flat, having a shower for instance could be a real trouble, particularly because not only does my spine hurt/my neck hurt/ my right arm struggle to lift above my head to wash hair etc, but my palsy means my balance can be really off. I have slipped in the shower more times than I care to remember.

This also means preparing healthy, nutritious meals can sometimes be a real trouble. Luckily Drew is a super good cook (though he’d never admit it) and he helps me out more than I can say. However, when I’m home alone, and I have very little spoons, cooking can be a nightmare – and don’t even mention the washing up!

That’s why I thought I’d start a new section on here: Easy Eats (or something like that…I’m trying to be creative but failing rather miserably!). Of course, anyone can make these, but my aim for these posts is to create healthy, (hopefully) tasty, delicious meals easily with as little effort as possible, and I’ll try to include some hints and tips to make life just that little bit easier in the kitchen.

When you’re constantly ill eating well is absolutely essential; and, annoyingly so, a lot  easier to say than it is to do. I’m hoping this will be a useful addition to the blog; let me know what you think!

Watch this space!

Hope you’ve had a great Wednesday,

Heather x

Hospitals, Spoons and the ‘P’ Word

Hello, there. I hope you are having a fantastic Tuesday. I’m currently writing from a room that’s eerily similar to one I occupied in my first year of university (minus the bullying that happened daily…thank god) and it’s rather nice to be back in such a social environment but with less of the stress this time round. This week I’ve been working at a Talent Development Program at my university and it’s been a lot of fun. I’m mentoring a group of soon-to-be undergraduate students and am helping them to complete a presentation on a particular topic. The presentation itself will be assessed by professors of the university, so I can imagine they’re feeling a little intimidated at present (though I know they can do it!). It is a lot of work, but it’s a breath of fresh air to be back in university working with students and my group are all wonderful.

Despite the fantastic week, I have had a fair few appointments/medical emergencies and my spoon supplies are feeling just a little bit depleted so I’m snuggled in bed as a consequence (for the ‘Spoon Theory’, if you don’t know what it is already, head over to But You Don’t Look Sick . It has become a fantastic way for many with disabilities/chronic illnesses to articulate their experiences to those without chronic conditions). This all started on Friday. Things were relatively great until then and I was just about managing to cope with things/have enough spoons to do the things I wanted to. Michael, a close friend from university came over, (he has been working on the same project as myself at uni so came to stay with me) and we spent lots of time catching up, sipping G&Ts and watching wonderfully silly things on tv. It was fabulous…

… until Friday afternoon. We went for Italian food, which seemed innocuous enough. And so we enjoyed pizzas and chatted a while and then strolled home feeling rather content.

Until my body decided it had other things to do, that is.

It all started with itching…lots and lots of intense itching all over my scalp and face, which made me want to scratch my skin to shreds. It all happened so quickly but by the time we got to my flat I was so uncomfortable I tore off my clothes and desperately hopped into a cold shower. Nothing was alleviating my skin and by this point I was covered head-to-toe in a violent, angry, itchy white and red rash. Nothing escaped; it was all over my back, my chest, my legs…and maybe unsurprisingly, I began to panic. I became dizzy and light-headed and by this point I was running around the flat naked (I know, poor Mike!). We took the decision to ring an ambulance as soon as I found I was struggling to breathe and the paramedics burst through the door to me, completely stark-naked, struggling to breathe in a heap on the floor. It was probably hilarious.

Turns out I had a severe allergic reaction, although I’m yet to find out what it was brought on by. I was given a strong dose of anti-histamine by injection and was offered to be taken to hospital. I politely declined and thanked the wonderful paramedics for all their help (whilst apologising for my initial lack of clothing…im never going to live that down, am I?!) and that was that. it was over almost as quickly as it had started but I have been strongly advised to go for an allergy test.

Not only that, but yesterday I went to see a consultant neurologist for my hemi. The fabulous news is she’s referring me to orthotics, physios AND an occupational therapist, which I’m absolutely thrilled with and I’m hoping they’ll all be able to relieve my pain/help out even if only slightly. it would be a fantastic help to the quality of my life. Today I went to my weekly pain management appointment which was painful, but I am starting to see results in terms of muscular pain so I’m willing to put up with the short-term pain for now.

Tonight I have been thinking, and I’m just beginning to realise that this will probably be the way things are for a while this year, but I think that’s okay. I know I shouldn’t feel guilty about receiving all this treatment but I do, I really do. Sometimes I sit and think that I make too much fuss/that I shouldn’t be feeling the way I do because, although I do struggle with pain and hemi and MH and everything else, I am so SO lucky to have been given a life like this one. I guess it’s okay that there will be hospitals and things probably for the rest of my life, and I need to understand that I’m entitled to that. Really it just makes me feel hugely fortunate to have such wonderful healthcare available, because I honestly can’t fault any of the care from my recent appointments. I don’t really know where I’m going with this post, but I felt like I needed a good old talk about things. I think tonight i’ll just stay in bed and wind down.

Hope you’re having a great Tuesday, whatever you’re doing.

Heather x

bad day

As I sit here typing this I can see the dull gloom of the sky outside, and the flickering light of candles on a desk. The landscape reflects my mood; the sun is absent, not even a patch of blue is to be seen and the sky is so overwhelmingly grey. Today is a grey day, and my mood seems similar. I feel dejected, stressed, tired and everything else that comes along with it. I’m at a stage where I’m really resenting things. I resent my body; I resent my body right now because I wake up in pain and I fall asleep in pain, it hurts to walk and it hurts to sit, and all the silly, mundane things that need doing in everyday life seem impossible and difficult. Washing my clothes is an ordeal, making my bed is a challenge, and cleaning the house leaves me in so much pain I can’t do anything for the remainder of the day. I feel hopeless. I feel ashamed of my body, and even more ashamed of the way it makes me feel. Today the pain in my body is taking it’s toll. I feel robbed of the opportunity to do things without having to think of their consequences. I am constantly weighing up the pros and cons of analgesia, knowing that either way I can’t win. Today I am realising that I struggle and it’s the struggle that’s the hardest to address. I am stubborn; but there’s only so much I can take on the bad days.

I’m hoping for a brighter tomorrow.