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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Cerebral Palsy: some things to know

Hello there. I’m afraid this is only going to be a quick post because I’m currently wrapped up in a blanket trying to get pain/fatigue under control!

I currently volunteer for Scope on their online forum as a Community Champion, which is really lovely as I get to chat with a variety of people from a variety of backgrounds. Scope is one of the UK’s leading charities for supporting disabled people and their families, and their website and blog has a wealth of information about certain conditions and I thought it’d be great to share some information with you regarding cerebral palsy, which is often misunderstood.

You can find out more here.

Why not come and join in on our online community? We’re a lovely bunch, honestly!

Hope your Friday is going well,
Heather x

Acceptance: Learning to Thrive

Hello there. I hope you’re having a wonderful day. It’s been fairly productive today which is really good for me; I’ve managed to get some work done, gone food shopping and done general errands, but as a result I’m now slumped on the sofa desperate for bed. It sounds like I’m being a little dramatic, but doing the ‘everyday-stuff’ – you know, the boring Adult stuff – can often be the hardest for me.

I can cope with my university work; I do a research degree at my own pace. I can cope with my occasional volunteering and of course I love writing this. But it’s the everyday things, the essential things that are becoming more and more difficult to keep on top of. Washing clothes, hoovering up, cleaning the bathroom, cleaning the kitchen, preparing and eating meals…these just take me ages and completely wear me out.

By the time I do all these things, my university work  and social activities, I’m pretty much exhausted.

When I was younger I suppose I didn’t realise just how much I relied on my mum and family to do things. Loading the washing machine for example leaves me in agony. I struggle to use both hands, so even just washing pots and pans and hand drying them is a gargantuan effort. Hanging up clothes to dry and then folding them away when you have half a body that doesn’t cooperate as you wish is physically draining.

And don’t even get me started on how I feel emotionally about all this. I can guarantee it wouldn’t make for cheery reading.

When I started university I realised that living independently is difficult. There’s lots of little things that need to be done during the day and when you don’t feel up to it – because of pain, or tiredness, or low mood – it’s all too easy to leave. And thus you enter a vicious cycle of accumulating mess/paperwork/laundry and no one wants that.

I started seeing an occupational therapist for the first time ever this year. I don’t know why, but despite my cerebral palsy diagnosis I’ve never seen one (and the repercussions of that belong in a different post entirely!). Seeing occupational therapists has genuinely changed my life. I never realised I was entitled to living aids. I never understood why I found everything so hard, but it was all explained to me. Seeing occupational therapists has been genuinely fantastic. Initially it was extremely daunting having someone come round to tell me that I needed extra help and things to help me around the house, and I found this hard to admit.

Someone once told me that getting help was giving in, and that’s always stuck with me.

Only recently have I come to realise that getting help is far from giving in; they enable me to live more independently. Using aids – a seat in the shower, a rail on my bed, a perch stool for cooking – lets me do the everyday things when I’m too exhausted to stand up or when I’m in severe pain. I can cook knowing I can sit down. I can grab a rail and get out of bed even when my body is resisting. It’s amazing.

The occupational therapist who visited my flat gave me a catalogue full of helpful living aids and I’ve been flicking through it circling the amazing things available. There’s chopping boards with spikes on so you don’t have to hold food whilst chopping it, and ‘easy reachers’ that mean I can pick stuff up without bending over and being in unnecessary pain. I’m realising I’m finally ready to accept this; I’m finally ready to accept that by getting these things to make life easier I’ll be living my life to the full.

It is not weak to accept help.

I don’t want to limit myself and my choices in life. I want what everybody wants; I want to happy.  I am taking the steps towards acceptance.

I am learning to thrive, and I will get there.

I hope you’re having a fantastic evening,

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

The Past Week

I just thought I would give you an update from the past week or so as things have been really hectic and it always feels great to write about everything. It’s definitely cathartic discussing things that have been an issue, and so this is probably going to take on a more personal tone.

It’s been a busy yet wonderful 7 days. Exactly a week ago, I found myself in a room packed full of wonderful blogging folk. We ate cakes, sipped tea, got to try out some brilliant new products and had a generally all round fantastic day. It was really fantastic to meet some new people, and though I’d class myself as a born-again newbie blogger, it was nice to feel somewhat integrated into a community of bloggers. I struck it lucky on the raffles and came home laden with goodies and treats; all of which are jotted down into my blogging schedule to appear over the course of the next seven days. I admit I’ve been somewhat hampered; I cannot seem to access my photos from my SD card, yet on my camera itself it is displaying all the pictures I’ve taken. This is really frustrating, as I had some great things to show you on there. Hopefully I’ll be able to work it out soon, or alternatively I’ll just take some more pictures on a different device and hope for the best! Either way, it’ll buy me a bit more time to really get great use out of the products and hopefully I can provide you with a really useful review of the day itself and the products.

Since it’s the run up to Christmas, there’s been some great events on. I’ve had lovely little nights in with friends, cosied up with a bottle of wine and some festive treats, chatting the night away. I’ve also consumed the obligatory festive mince pie and mulled wine, watched a fair few Christmas films snuggled up in bed with only the light of a candle, and everyday I’ve been eagerly opening each little window of my advent calendar with a small piece of chocolate as a reward for my efforts. This is such a wonderful time of the year and I’m really grateful to all the generous people who are sharing it with me.

University work is beginning to pile up, and this is starting to take it’s toll on me both physically and mentally. I thought I was getting over the last ‘bad pain’ phase, but I fear it’s only just beginning. The most frustrating thing about living with chronic pain isn’t necessarily the pain itself, but the things that come along with it. I am so, so tired recently. All I want to do is sleep and this is becoming a real issue for me. When there’s so much to do (volunteering, studying, essay writing) sleeping for 10-12 hours every night takes a massive chunk out of the day. Yes, I could take painkillers, but these make me sleep anyway, and without them there’s a chance I might feel well enough to power through. I am so excited to get home and to try and have as much of a break as possible. Admittedly this won’t be easy considering I have 11000 words worth of essays due in for January, but at least my family can look after me a little bit and take some of the stress away. Cooking is becoming a real chore, and this is really sad. Cooking is a great stress reliever for me, but feeling this exhausted means I don’t always enjoy it as it completely drains me of any energy. However, I’m hoping that over Christmas I’ll be able to get back into the swing of things. In doing so, I’m aiming to start posts including my favourite recipes and food products. I absolutely LOVE food, and I’d love to share any inspiration with you all as I know how tricky it can sometimes be to come up with something exciting and different whilst working/having a busy day. I love quick, easy to prepare meals, as they’re much easier for me to create when I’m having a bad day, so expect some of these in the near future!

This semester has made me realise I need to stop expecting so much from myself. I definitely need a good break and to look after myself a lot more. Sometimes you need things to go a bit haywire to put things into perspective, and I’m definitely looking at things through different eyes.

I hope you’re enjoying the run up to Christmas whatever you may be doing.

Heather

 

And so it begins…

I’ve always been one of those people who have started writing a blog, enjoyed it, then somehow let living my life get in the way of writing it. It’s a similar scenario when it comes to keeping diaries; I say I’ll aim to write a wonderful account in it daily, but then I realise that 1) my life isn’t really hugely exciting, and 2) I find other things to do.

I have tried to fathom out an explanation for my lack of progress many times to no avail, because despite the enjoyment of the blogging itself, I came to the realisation that I’d become disheartened with the whole idea. I never began blogging with the expectation  that I’d draw in plenty of readers from across the globe, (though I did get a fair few followers,) but I just stopped believing that what I was writing was a worthwhile (or even enjoyable) read.

I think the problem was that there was no clear direction for my last blog. It had an incredibly ambiguous and vague direction. If I remember rightly, I labelled the page as a space to talk about my life, which is, in all honesty, nothing more than ordinary. I could probably sum up the generalities (and banalities) of my life in no more than four sentences. I’m no super hero.

What I did find useful and sometimes even therapeutic however, were certain posts I featured on my blog. I live with cerebral palsy, in the form of a mild right-sided, spastic hemiplegia.  I also live with an abnormal increased kyphosis in my thoracic spine, sometimes known as Scheuermann’s disease, which is probably caused by me having cerebral palsy to start off with. These are both life-long conditions. They’re not always easy to deal with. Pain forms a huge part of my everyday life, and coming to terms with my conditions has been an arduous, emotional process. Blogging about my medical conditions helped me to fathom out my feelings towards them, and allowed me to share information with the world that I didn’t usually discuss. It felt good to discuss my feelings surrounding the cerebral palsy, as it’s something people aren’t always aware that I live with, and most importantly for me, those posts provided me with a place where I could be honest with myself. It was hugely cathartic.

In light of this, I decided to start this blog specifically for talking about my disabilities. I hope it will be (at the very least) 1) informative, and 2) as cathartic as previous as attempts.  It would also be fantastic if my silly posts somehow managed to help others in my position, because I know having someone to relate to has made my coming to terms with things a whole lot easier. I’m not going to claim I’ll be updating this daily, because I don’t really know yet, but I will do my best to post whenever I can. It’s a start, and I promise I’ll try.

If you’ve managed to successfully navigate through my (often pointless) ramblings, I applaud you! Before I make this far longer than it has to be, I’ll stop myself right here.

Until next time,

Heather