Snuggling up under the duvet, the smell of coffee in the morning, waking up early and having sun shine through the window, making new friends, getting things done, leisurely walks, helpful nurses at my hospital appointments, squeaking guinea pigs first thing in the morning, cooking, feeling positive
Hello! I’m currently writing this whilst half-asleep. The past few weeks have been very busy. I’ve been inundated with appointments, deadlines and have been desperately trying to keep on top of my current research. I’m just about getting there. I haven’t really stopped for a while; I can’t remember the last time I took a day out to do nothing, though I do know I’m very hard on myself. Tomorrow I’m at the hospital for pain management and I can’t wait; I’ve been struggling with muscular pain so hopefully sticking a few needles into the affected muscles will do the trick. I’ve also been experiencing a patch of neuropathic pain on my back, which is seriously weird. It’s not like pain – though I can’t think how to adequately describe it – but it feels like someone is pouring a stream of cold water down my back, and sometimes feels like little electric shocks pulsing across the area. It’s really strange! I’m still waiting on facet joint injections, so fingers crossed I can have some soon. The pressure between my vertebral joints causes the most excruciating, burning pain, and often comes about after doing the most mundane things (cleaning, bending down to pick stuff up, sitting for too long) so it’ll be good if they help.
I have been to lots of lovely events over the past few weeks, which is really amazing! Watch out for my posts on the Hotter experience and the Leeds March Meet which will be up soon!
I’m currently applying for further study, which is quite difficult and time consuming. I’ve filled out several forms and drafted multiple research proposals. It’s a dream of mine to start PhD study; I really feel like I have so much more to give regarding research, and I’d love to be given the chance. Funding (as always!) is the main issue here, so keep your fingers and toes crossed for me.
My MRes is getting very interesting; I’m currently drafting up another two chapters and I’m in the midst of preparing a presentation. I’m also redrafting a book review I completed in the first semester to be submitted for publication, so it’ll be great if I can get that done.
I’m so sorry this is a pretty rambling post; life is extremely busy, but I have plenty of interesting posts ready to write up and publish!
How have the past few weeks been for you? Let me know in the comments!
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,
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,
Hello there. Now it’s safe to admit that Christmas is well and truly over. The decorations and trees in people’s houses have come down, and there’s talk of spring cleaning and resolutions everywhere you go.
In light of the New Year I feel a need to look back on it and reflect a little.
2015 was an odd year. There were fantastic highs, and terrible lows, and not really much in between.
Let me explain.
2015 saw me finally accept I needed help for my depression and anxiety. Initially, this was a terrible situation. My anxiety was without a doubt at its worst. I found it almost impossible to leave my house without Drew. And when things got too much, I couldn’t bear to even bump into my housemates so I deliberately altered my sleeping pattern to avoid people. Of course, it wasn’t anyone’s fault, but things got so bad that every sound made my heart beat so fast. I’d wake up dripping in sweat, having been jolted awake by terrifying flashbacks to a traumatic time, and dealing with all this alongside chronic pain and third year was really very difficult. Though it was a definite low point, I’m pleased to say that things got better.
Because, what’s most important, is that I realised I needed help and made the decision to get it.
That’s a definite high point, because it was the best decision I ever made. Through a mixture of counseling and medication, I’ve managed to keep my mental illnesses under control.
2015 was also increasingly difficult with regards to chronic pain from my spinal condition and cerebral palsy. There were very bad days. So bad in fact that for a week or so my diet consisted of instant cuppa soup as getting up to cook things was just far too painful, especially when having to prepare things with my affected arm.
But, I am pleased to say that I made it through. And, in what feels like forever, I’m finally being listened to by doctors. For once I feel like people are listening. That people really do want to help. And as a result I’m seeing an orthopaedic consultant, neurologist, occupational therapist, physiotherapists, orthotists and having regular pain management. Though I know there will never be a cure for my cerebral palsy and spinal problem, I know I can look at managing their symptoms and getting the best out of my body. Slowly , and with the help of my occupational therapist, I’m learning to undo all that negative ableism that’s permeated my thoughts. I’m learning to accept that it’s okay when I can’t do certain things. I’m learning to accept that my best is more than good enough. I’m learning that I have achieved so much in spite of all these things and that I need to stop being so hard on myself. I’m finally learning to accept who I am.
It’s OK that I can’t always do things for myself. I’m doing my best, my absolute best , and that’s all I can ask for.
I certainly did my best in 2015 when I graduated from university with a BA hons degree in the summer. Those painful, long-winded nights in the library dosed up on codeine paid off. I did it, and for once I can admit that I did well. Here is a picture of Drew and I in our silly hats to prove it.
I also got onto my MRes course at university, which is everything I hoped for and more. Fingers crossed I’ll be getting to wear that silly hat again once more!
2015 saw me getting more and more into my blogging. Blogging initially started as a way of achieving catharsis and discussing things I felt were important to me. 2015 saw my blogging continue to grow and I want to take the chance to say thank you for putting up with me! You’ve all been fabulous. You have no idea how much it means to me that people actually read what I write on here!
I also collaborated with some fabulous brands this year, which is absolutely amazing! I’d like to thank Personal Planner, Primula, Wren Kitchens, Al Porto, Ultradex, Nine to Five Heels and Stick to Stigu (just to name a few!) for the wonderful opportunities you have given me. It has been fabulous to work with you all and many thanks for your support!
2015 also allowed me to continue making lots of friends through blogging. The summer event was absolutely fantastic and I’ve made some really lovely friends. I’m hoping that the #HullBloggers will go from strength to strength in 2016, and thank you all for being so lovely!
It sounds a little silly but 2015 saw me get these two wonderful little things: my guinea pigs Smudge and Patch. They have provided so much joy through difficult times and I hope will continue to for as long as possible. They even made it into my doctors notes because they’ve helped with my well-being so much!
So though 2015 wasn’t the best in parts – there are some things perhaps a little too sensitive to mention on here that contributed to that – i am so thankful for the good times. I’m hoping to make 2016 much more positive now that my medication has been sorted out for everything and seems to be helping.
As always, thanks so much for reading if you have, and Happy New Year to you!
Look after yourself whatever you’re doing,
…from my shoulders. Yesterday I came out of uni positively beaming. The day went well; I presented a conference paper and people really seemed to like it. They asked all sorts of questions. They seemed like they were genuinely interested. And most of all, I felt – for the first time in a very long time – that I was WORTH IT and that my work IS valuable in some way.
It was just the boost I needed.
My Mres dissertation is a chance for me to amalgamate my two passions; English literature and disability studies. I have become increasingly passionate about the study of disability and to be able to study it through literature is amazing. It’s literally the perfect degree.
What I really needed to know was if my work, no matter how small, can contribute positively in some way. I feel like it can, and it’s truly reignited my passion. I really want to contribute to this. I really want to feel like I’ve done something amazing.
My peers probably don’t realise how much their feedback means to me, but after months of self deprecation and loathing and having absolutely no faith in my ability to produce work it was everything I could have hoped for and more.
Amongst all the hospital appointments and pain and anxiety and depression to know I can do something is the most liberating, freeing thing.
I am feeling really good; and it’s such a fabulous feeling.
I hope you’re well whatever you’re doing,
…are just a few words to sum up the last few months. It’s really strange. I worked out the other day that I haven’t had a single week free of hospital appointments since I moved back to uni. That’s three months with at least one hospital appointment every week (but sometimes up to four a week).
I am exhausted.
Being perpetually tired is something i’ve had to get used to as of late, and the worst thing is I don’t know what it is that is leaving me so run down. The other day I had my occupational therapy appointment. For anyone who doesn’t know, they basically help you to ‘do’ things better. So in my case – cerebral palsy (right hemi) – they help me to make sure my hand has ‘reached its full potential’ in terms of coordination and control. As it turns out, I have a pretty powerful grip in my palms, but I find controlling my fingers and other fine motor movements completely frustrating. I can’t pick things up with my fingers very easily at all, or do up buttons, or cut up my food at dinner, or use my right hand when my left hand is full (getting on the bus with the change in one hand/ticket in the other/personal belongings balanced somewhere on my person is incredibly challenging).
As is the case for many with a disability you learn to adapt to difficulties, and you manage to find a way around the more challenging daily activities. This isn’t always a conscious effort, and as my occupational therapist pointed out I won’t realise I’m making these changes. The adaptations one makes with CP aren’t ‘natural’; they’re not energy-efficient or ‘easy’ movements because they’re not the movements the body is designed to do. I had always read that people with CP expend between 3-5 times more energy than those without but I didn’t quite realise this until the other day, particularly with regards to my own CP.
My therapist gave me a simple task to complete with my right hand; I had to place plastic pegs into holes on a board. This wasn’t a trick and there was nothing sneaky going on: it was just a simple, easy activity.
But not for me.
As I tried to gain control of my fingers to pick up the pegs I dropped them. I then struggled to get the pegs at the right angle if I managed to pick them up (very awkwardly). My elbow was pointing outward, my wrist was curled under, and my whole posture changed; I was so, so intent on completing this activity my head felt like it would explode. Everything about my body was fixated on trying to complete this one little meaningless task, and it completely exhausted me.
and, most of all, I felt like a failure because I couldn’t.
I’ve never done these tasks before, and I’ve never seen an occupational therapist until this year. Treatment was mostly focused on my leg (physio, the occasional neuro and consultant) and my walking, as I had an operation to enable me to do so when I was very small. I think my hand just got a little bit left out on the way, and as a result I’m finding all these tasks impossible and ridiculous and a little bit of a shock to be honest.
Of course I’ve always known I haven’t had good control over my hand, and I often deliberately avoid using it because I drop things and have in the past been made fun of for it (kids, eh). But this exercise drove it all home to me.
It’s hard to live with a brain injury. It’s frustrating when your body doesn’t behave in the way you want it to. And it’s tiring, because not only is it physically taxing but mentally frustrating.
We had a long discussion about Everything, and it was so refreshing because I felt like she really understood me. We discussed the fatigue, and really it’s probably a variety of things combined into one; med side effects, pain-related tiredness, depression, anxiety, CP…and for now that’s something I have to work through. I need my medication. I can’t just stop doing things. And unfortunately neither my pain nor brain (ha!) can switch off for very long.
But most importantly what my therapist made sure I knew was that it is okay. It is okay to feel this way. It’s okay to take rest days, and it’s okay to have a break.
Living with a disability isn’t easy.
It is not okay however to make myself feel bad about all this, and feel bad about the fact I’m tired, or think of myself as a failure, or less than worthy. Because those thoughts just add fuel to the fire.
Having the depression and anxiety on top of the CP/spinal problem really doesn’t help (and I spend a lot of my day feeling sad/empty/guilty/horribly anxious as it is) but I do not need to add to these feelings.
I am not a failure, because I will learn how to do things differently. I will thrive, because I’ve already come this far without the help.
Getting used to everything is taking time, but I think I am getting there. It’s just going to take time.
I am sorry because this is a really rambling, ridiculous post, but (as always) many thanks for reading if you got this far. It means a lot.
Take care of yourself whatever you’re doing; we could all do with a break every now and then.
Hello, you. It’s Thursday and I’m in bed working. I put the guinea pigs into their pen and they’re currently nibbling on hay and being squeaky and generally very cute. As far as days go, recently things have been Good; because it’s bonfire night tonight I’d usually be very worried about the loud noises and bangs and things but right now I’m feeling okay, although I have no doubts that my startle reflex will be playing up nicely of course. But it’s okay, because right now I am feeling positive and good, albeit ever so sleepy.
Anyone who knows me personally will know I’m a proud mancunian. I LOVE my hometown of Manchester; it’s vibrant, bright, dynamic and just generally very wonderful and most importantly it’s home. When I was looking around universities I looked for ones very close to Manchester because I knew I might need a little support from time to time, but when people found out that I was coming to the University of Hull, many were skeptical at first.
You see, Hull doesn’t have the greatest reputation in the UK. People seem to remember it from its fishing days; ‘Hull smells a lot, I remember that!!’ or seem to think it rather run-down, lacking in amenities and things to do. In my leavers’ book someone wrote a comment about Hull being grey and dull, and whilst I won’t lie and often the skies may be grey and foggy this time of year, the place is anything but dull.
This will be my fourth year living in Hull, so I think I’m qualified to correct those who think badly of it. There are lots and lots of things to do here (and remember, I’ve lived in Manchester for most of my life and I think that’s a great comparison!). There are a number of restaurants to visit (including the lovely Al Porto, which will be featured in an upcoming post! There are bars, pubs and clubs where you can dance the night away/drown your sorrows/sing badly on karaoke. There’s places to go bowling, watch the latest films, play laser quest and you can even go and visit some penguins at The Deep which is a stunning aquarium (trust me, I love going there and would go every week if I had the time). The centre of Hull is also home to 3 indoor shopping centres and historic Old Town, so there’s plenty of places where you can go and enjoy some retail therapy. Newland and Princes Avenues are full of interesting boutiques, bars, cafes and restaurants, and it is a lovely bustling part of town near to the university. If you’re partial to a charity shop haul then there’s plenty to choose from down Newland. I have spent many an afternoon on the lookout for books/clothes/furniture I probably didn’t really need in the charity shops that are dotted along it, usually followed by a coffee in one of the numerous cafes on either Newland or ‘Prinny Ave’.
The university itself is beautiful with a mixture of old and new buildings, and currently campus is covered with a blanket of golden leaves that crunch satisfyingly underfoot. My department (English) in particular is wonderful; they are incredibly supportive of their students and will help in anyway possible. If you’ve been reading you’ll know my mental health has made things difficult for me, but my department has always been there to support me when needed. I love attending university; I’m always learning, always developing and I’m always pushing my boundaries, and no doubt the English department has been integral to that process.
Every time I return to Hull from Manchester I get that rush of excitement when I approach the Humber Bridge. It has been a place where I have grown, changed, and (hopefully!) developed as a person. Things haven’t always been easy whilst living over here, but it is the place I will always remember. So much has happened since I’ve been living here and I’ve become so incredibly fond of it. Although it’ll never be my ‘hometown’ I think I’ll always have a special place for Hull. All I ask is that you take your time to get to know the place before you slate it. I know this is only a short post, but I really fell like I need to stick up for the place. It is unlike anywhere I have been before.
Hull, has been good to me.
I hope you’re having a peaceful Thursday and enjoy yourself if out watching fireworks. Stay safe!
It may be a cliché, but it’s true: you do learn something new everyday. With every new day I’m learning more and more about myself. I’m learning that thought things may be difficult, I can find a way to work through them. I am learning that I am resilient if I give myself the right conditions. I am learning to try and accept the things I cannot change; I’m not being pessimistic, but realistic. I am giving myself time, and this is something I’ve always struggled with.
Part of my problem living with both my physical conditions and my mental illnesses is I don’t cut myself any slack. Though I know I’m technically ill – and that I can’t necessarily help it – I’m always beating myself up about things. I’m always wishing that I could do more, that I should push myself and just deal with the consequences later. I know this isn’t productive as it’s a really destructive habit but it’s hard to accept that sometimes you need to do things a little differently to get by.
But, I think things are starting to change ever so slowly.
Yesterday was one of ‘those’ days. The night before I barely slept (perhaps slept for four hours in total) and my anxiety was running wild. I kept convincing myself that the shadows on the wall were people/scary things (yes, I know it’s totally irrational) and the usual narrative of ‘nobody likes you, you’ll get nowhere, you’re worth nothing, everything is terrible and you deserve it’ was circling around my head. It was just a terrible, teary, ridiculous night. And as is usual after a night like that these feelings continued into the morning. I woke up feeling pretty low, but this sadness descended into complete emptiness and before I knew it I was crying uncontrollably on the floor.
I know. It really was quite a scene.
I was due in a seminar in the morning and the thought of missing it made me feel horrendous. Yet I knew I was no use to anyone unless they wanted to witness someone crying for the whole three hours of course. Drew – being the lovely person he is – tried to calm me down and convinced me to stay at home. I felt so incredibly guilty about it, but for the first time, I didn’t really put up a fight. I knew I couldn’t go in – there was no point lying about it – and suddenly I realised it will all be okay.
It is all okay.
As I suspected, the department were completely and utterly lovely about it all. They’ve offered help and support to help me through the remainder of my MRes course and no, despite what my anxious-brain thinks, no one hates me. No one has bad feelings towards me. They understand and are there to help.
And sure enough, after my day off yesterday filled with guinea pig cuddles and animal crossing and cups of tea in bed, I am feeling a lot better today.
Living with mental illness is a constant battle with yourself. it’s a constant struggle with your emotions. It’s knowing you’re not well but desperately trying to fight it. It is a constant, uphill battle.
But I can work through this. And I will.
Today is a more positive day. I cleaned out the guinea pigs and fed them tomatoes and carrots and gave them cuddles. I’ve even washed up some crockery and tried to tidy up the living room which is something I couldn’t face yesterday. I’ve had a frothy coffee (my Tassimo coffee in the mornings is such a treat) and I’m planning to bake some banana muffins.
Today can be a good day if just cut yourself some slack. You’re human; you are no superhero (although of course you are always magical and wonderful).
I hope you’re having a happy Tuesday whatever you’re doing. If my banana muffins prove successful, I’ll try and get a recipe up for you all. Cross your fingers for me!
Take care of yourself,
A little bit intimidated. Is this what your 20s are about? Do you just float around waiting for an opportunity to pass you by, praying one does and moaning when it actually happens? Are your 20s meant to be about panic and uncertainty and unadulterated fear???
Today all I can think about is what i’m going to do after study is over.
Okay so…what am I actually going to do?! What can I do that will make me feel okay and not in too much pain? How am I going to survive and all that jazz? I’m struggling to cope as it is. Being an adult is ridiculous.
I don’t even know what I need to do to get a job. I don’t even know what I want to do. (No. That’s a lie. I do want to win the lottery and pay for people to take me to hospital appointments and surround myself with fluffy cute animals and buy myself a house and put most of the remainder in the bank and live off the interest. That isn’t too much to ask, is it?? Surely not…)
Is it just me who is this confused? Will this pass? Will someone fix my body so I stop feeling scared about what’s going to happen to it? I do not want to adult today. It is not happening.