The blossom on the trees, bright sunny days, the jolt of caffeine in my morning coffee, the smell of baking bread, laughing with my mum, the smell of well-loved books, the scrawl of bright blue ink from my pen, the crinkle of a packet.
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.
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.
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.
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.
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)
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.
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.
…hot buttered toast, cosy nights in, guinea pig cuddles, sipping milkshakes with lovely friends, genuine smiles, the smell of an old book, crisp sunny days, bright lipstick, freshly baked bread
I am struggling recently.
At the minute, I literally see no redeeming features in myself. I feel ugly. My acne is coming back. I hate the way my crooked spine looks in the mirror. I hate the way I get frustrated with the pain and cry. I hate the way I’m taking tablets to ease the pain and hate the way they don’t always work.
I hate the fact I cannot control my body, no matter how hard I try. I wake up in pain, and o fall asleep with pain.
I hate that my automatic response is to push everything I love away. I hate that I can’t concentrate on anything for more than five minutes at a time.
I hate that I’m at multiple hospitals and doctors appointments every week.
I have no faith in my academic abilities, or my social relationships, or any other extra curricular thing I attempt to do.
I hate that when I’m happy – or when there is a glimmer of happiness – that these thoughts come rushing back.
The ones that tell me I do not deserve happiness. I do not deserve success. I do not deserve love.
The ones that tell me, over and over, that I deserve this pain I’m in. I deserve this pain because I’m such an awful person.
I am just so fed up. I keep going round in circles and I can’t keep doing it. I can’t. This is all too much.
I just want to be far away from all this madness. Somewhere free of responsibility, free of doctors prescribing new medication or performing new treatments or trying their best to fix me.
I am just overwhelmed by how inadequate I feel.
I just want it to stop.
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,
Hello there! I’m writing in the early days of 2016, and with a New Year comes new resolutions, ideas and ways of doing things. I’m a huge fan of organisation, and particularly due to my anxiety and depression routine is essential to keeping me calm: or at least looking like I know what I’m doing! Though phones are a handy way of keeping note of key dates, in my opinion nothing beats using a proper paper planner, and they can be such wonderful things to keep daily life in order.
When Helena from Stick to Stigu offered me the opportunity to try out their 2016 planner, I jumped at the chance.
This is the first edition of the planner. What immediately appealed to me is the neutral navy colour, which would be suitable for everyone. The planner is ring bound, making it handy to keep a pen in place, and the tagline of ‘plan hard/play hard/rest hard’ is completely true to the interior of the planner.
There’s a lovely introduction from the Stigu team in the front. Here we find out that ‘Stigu is a juggler, and this planner is for all of us out there juggling.’ Well, this was just my cup of tea!
I’m used to traditional planner layouts, where there’s often a week across two pages and a space under each day and date, but Stigu is different. Stigu has a week per page arranged in grid format, with a lovely big space opposite for doodling/note taking/to do lists. What is really lovely is the little reminders and Stigu doodles scattered throughout, reminding you to take rests, get energized or even create things!
Each page brings with it something different, whether that be amusing doodles, anecdotes or handy little hints. There’s something for everyone to enjoy, and at least some thing on each page is guaranteed to make you smile. I particularly love the emphasis on making sure you rest, restore and ground yourself, and as someone work several chronic illnesses this is something I can really appreciate.
There’s also the handy addition of yearly dates, which is good to use if you just need to glance at dates coming up.
Each page has a handy tear off corner so you can keep up to date with each week on each page, and their web address is handily printed throughout.
Overall I have to say I’m hugely impressed with this planner. It is everything I could need and more, and each time I pick it up there’s something about it that makes me smile. It is already coming in handy as I’ve jotted down my hospital appointments and other errands!
Thank you ever so much for Stick to Stigu for allowing me to review this. I absolutely love it, and I’m sure it’ll be stashed away in my daily handbag for the rest of the year!
Why not check Stick to Stigu’s social media accounts?
Happy New Year! I hope your Sunday is going well.
Hi there. Hope your Sunday is going well wherever you are. Today Drew and I are having our own little Christmas, complete with Christmas sweaters , ginger bread houses, crackers and all the trimmings. You’ll just have to wait for all the details I’m afraid, but I have high hopes!
If you’ve been reading you might be aware that I’ve been using medication to keep the symptoms of my depression/anxiety under control. I started on fluoxetine which worked well to suppress symptoms, but unfortunately I had disturbing intrusive thoughts so my doctor and I decided to try something different called Sertraline. I’ve been taking it for about eight days now, and so far I feel okay; still having wobbles, but able to do the things I need to without panicking/crying all the time.
Medication for mental illness can be a controversial issue.
There are people who don’t believe in using medication, people who think of it as the ‘easy option’, people who couldn’t praise it highly enough, and there are people who don’t even think mental illness is necessarily a valid illness that CAN be treated with medication.
Like most young people, I’ve always been wary of medication.
From a young age I’ve been prescribed various medications to control pain in my spine, and some of these meds are strong and come with warnings and side effects. It has taken me a long time to accept having to use them. They are not the easy option: they aren’t necessarily good for you, they carry warnings of addiction, sleepiness, euphoria…the list goes on.
I didn’t want to ever become dependent on painkillers – and I still do my best to cope without them – but I don’t want to be made to feel bad for choosing to use them on bad days.
Pain, depression and anxiety can have a seriously negative impact on quality of life. Each of them usually accompany the other; the parts of the brain that deal with each are similar if not the same.
When I’m in pain, I’m depressed. When I’m depressed, I’m in pain.
Pain makes me sluggish, tired and lethargic. Pain makes me feel guilty because I can’t do ‘normal’ things. Pain makes me feel bad because I can’t pluck up the physical strength to tidy the house or cook or wash my clothes on bad days.
Depression, anxiety and chronic pain are a toxic mix.
Before I started medication for my mental illness I was an absolute mess. I could barely leave my room; the thought of having to see my housemates filled me with horror. It was nothing they had done; it’s just the anxiety/depression would convince me they hated me and that they didn’t want to see me, or hear me, or generally be around me.
You see, depression and anxiety can whisper nasty little lies in your ear. They make you feel worthless. Empty. Alone.
I’d do anything to avoid bumping into my housemates. I’d listen carefully to make sure I didn’t bump into them in the corridor. I showered when everyone had gone to bed. I couldn’t go shopping without Drew. I couldn’t cook, and didn’t always eat. When I made it into uni (with Drew walking me in) I panicked and wound up hysterically crying and having to leave, because the thought of being surrounded by people filled me with terror.
I was not the person I am now.
I didn’t want to stop to talk to people. I wanted to hide away from everything: so I did. The majority of my days were spent in floods of tears under the duvet.
It was a terrible time.
These episodes very rarely happen since I’ve been on medication. I have off days – of course – but I can definitely function. I CAN do the majority of things I need to do.
Shaming people who take medication to control their mental illnesses is not helping anyone.
I don’t believe any one has the authority to tell me when/why I shouldn’t take my medication. You might not agree with it, but it’s not your choice. It’s mine.
Medication has allowed me to feel (at the very least) a little bit like myself again.
I’m happy most days. I laugh. I smile. I tell rubbish jokes and I love doing my makeup and cooking and eating. I love watching documentaries and playing on my ds and reading books and discovering new things.
Depression made me forget my love for these things.
I am no longer empty. I feel like a person; I have emotions – positive, happy ones – and at the height of my depression/anxiety I was a horrible mixture of sadness, emptiness, guilt and panic. Happiness was a distant memory, and I was unable to feel it.
You might not understand why I take medication to control my illnesses. You might not agree with it. You might even claim they’re just a placebo.
But if they help me, why question them?
You don’t necessarily know what goes on in my head, or what has happened in my life. It can be a dark, miserable place. And as long as medication keeps me feeling okay and allows me to live life, I’m going to take it.
All I’m asking is that people be a little bit more considerate. Don’t judge what you don’t understand.
I know this has been a little heavy, but it’s been weighing on my mind.
Have a great day wherever you are; chirpier posts will be up soon, I’m sure!
…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,
It is my aim to be as frank as possible on here. I think being honest is incredibly important; not only for me, but for anyone who reads this.
When I talk about dealing with mental illness and disability I do it for two main reasons: firstly, this is a place for me to express my feelings. It is almost cathartic being completely honest, because it helps me to deal with things. I used to be someone who bottled things up for days at a time, only ever expressing emotion when things got to much and I broke down in tears/lashed out in fits of anger. This wasn’t healthy and I’m trying to change that. It just so happens that this is a great way to be upfront and honest. Secondly, being honest is the right thing to do. I don’t want to lie about my experiences. On the whole, things are good right now, but when things aren’t I don’t want to sit here and pretend they are. it’s doing myself a disservice.
This post might be a little surprising/ridiculous and you don’t have to read it if it isn’t your cup of tea. You can hang on and wait until I post something else; that’s the beauty of blogging. But today I am going to be totally upfront because it is important for me.
If you have been reading you’ll know I’m currently on medication to control the symptoms of my anxiety and depression. Without this medication, I cannot function. At my worst, I couldn’t leave my room without panicking, nevermind leave the house. So yes, they have been fantastic at minimising these panics. I also cry far less than I used to: if I remember rightly it was at the end of my second year when all my assignments were due in that things got Bad. I remember having to write an essay on Chaucer’s Wife of Bath Prologue whilst taking breaks out to cry.
Seriously. It got that bad.
Fluoxetine has been one of the wisest choices I’ve ever made; I can go out, I can go shopping, I don’t always feel terrified; although of course I have bad days. But fluoxetine has been brewing some nasty little intrusive thoughts. And – annoyingly- this is the only problem I have with it.
It doesn’t seem like much, but these thoughts have been disturbing to say the least. I’ve never acted on them (if i did it’d be an absolute disaster) but it doesn’t make them any less terrifying. They’re usually triggered by seeing sharp objects; knives in particular. And i get this little thought in my head that goes ‘hey, I wonder what would happen if you just stabbed yourself with that? you know. just a little bit. You should, you really should. Just try it!’
So of course these had to stop. At first I was worried about mentioning the thoughts in case they became so concerned they decided to do something drastic (I know, I don’t know, don’t ask) but I did, and turns out they’re just changing my medication, so that’s easy enough. So long fluoxetine, you’ve served me well (sort of).
Sertraline; I hope you’ll be good to me.
I hope you’re having a good Thursday.
…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.