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General health and well-being

Health Update

Hello there.

It’s been so hectic. I knew doing a masters degree would be a step up, but at the minute I am swamped with work! I’ve also been having regular hospital appointments and so I haven’t been able to devote as much time to my little blog as I’d like. There’s lots of lovely posts in the pipeline; reviews, foodie posts and all that good stuff, and hopefully I’ll get back into the swing of things soon.

I got a spine mri back and luckily my discs look okay! I do have significant lordosis (inward curve) in my neck and lower back due to the big kyphosis (outward curve) in the middle of my spine, but other stuff is okay. My sacrum is apparently tilted and often locks when it shouldn’t, so that explains the pain there. I’ll be getting facet joint injections between vertebrae to help with the pressure pain, and honestly I’m really excited to see if they work.

I also had a blood test recently because I sleep constantly. We don’t know whether this is med related or pain related (fyi chronic pain isn’t just painful, it’s thoroughly exhausting) but we thought we would double check stuff.
I also went to see the immunologist as I had a severe reaction a few months ago; I have the weirdest allergy I’ve ever heard of! I have exercise induced wheat allergy. So basically I can’t eat wheat then exercise. And that even includes walking! I have to really learn to carry my epi pen with me at all times.

Apart from that, I’m feeling good. I’m getting uni work done and I’m feeling quite positive about things. There’s a few fabulous posts in the pipeline, I promise!

Hope you have had a fantastic weekend 😊
Heather X

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Mental Illness Things Cerebral Palsy and Scheuermann's Related Uncategorized

Meds, Appointments and Pain…

…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.

Heather x

 

 

Categories
My Life Things Cerebral Palsy and Scheuermann's Related

Pain Management: My Experiences

Hello there. I’m currently writing from underneath a cosy blanket on the sofa. I suppose I have no excuse to be so lazy really, but I promise I am dressed and have made breakfast and have done all the Adult Things that you’re meant to do in a morning. I’m not feeling 100% today, but I’m a damn sight better than I was on Wednesday, so that can only be a good thing.  The sky is blue, the sun is shining and I have the flat to myself so I’m watching countless hours of daytime tv with copious volumes of tea to keep me going.

What I thought I’d write about today are my experiences of attending various pain management appointments. If you’re a regular reader you may be aware that I live with several chronic conditions and a couple of these cause varying degrees of pain. Due to the nature of my medical conditions there are no cures or quick fixes, and so I will have to deal with the resulting chronic pain. Though this takes some getting used to and can be mentally testing, I’m just going to outline my experiences with pain management and the physical side of things.

Some people I know really aren’t keen on the term pain management: they find it patronising, and possibly a little too vague (medical conditions affect everyone differently after all!) but I think I’m okay with it. For me, it took a very long time to accept that I needed help, and an even lengthier time realising that it’s okay to ask for help. Terminology aside, pain management basically deals with reducing the amount of pain one feels on a daily basis, and tries to enable those with chronic pain a better quality of life, including improved sleep, reduced fatigue and hopefully less pain = increased wellbeing. As many doctors have explained, pain levels affect a person’s mental health and outlook on life, and I can completely relate to this. Chronic pain is stressful; it is scary, it makes me irritable, and what’s worse is I don’t know how it will affect me in the future. So for me, I knew I wanted to give pain management a shot.

My first appointments started when I was around sixteen, and involved trialling various pain-management methods to find out which were the ones to provide the most relief. The treatments can vary greatly depending on your condition, but I started out with medical patches – namely a lidocaine plaster – which consists of a sticky patch impregnated with analgesia of some kind that adheres to the part of the body experiencing pain. I didn’t really rate these, so we moved on to alternative treatments, which included the use of TENS machines, capsaicin cream, laser treatment, corticosteroid injections, acupuncture and the last resort: pregabalin.As you can probably gather I ended up trying a lot of things. None of these really did anything for me, which can be really disheartening, I know. But I held out hope. And recently, I’ve found a pain management technique which works and has definitely reduced my musculo-skeletal pain.

So what is this pain-management miracle?

ACUPUNCTURE!

yes, you did indeed read that correctly! Acupuncture has really made my pain so much easier to deal with. And no, this isn’t just like traditional acupuncture; it does have some medical basis to it, seen here, on the NHS website. Although sometimes unpleasant, acupuncture has become an integral weapon in battling the pain I experience on a daily basis, and though this solution has been a long time coming (a whole 5 years since my first foray into the world of pain medicine!) it has really restored my faith in pain management.

Pain management can be an odd thing; it can be unsettling to ask for help, and it can be even more unsettling when things don’t quite go the way you’d hoped. But if you persevere like I did, you might find something that just works for you, or at least, as in my case, definitely helps. Pain management is no quick fix unfortunately but it is there, and I highly recommend you check out what the service has to offer you.

I’m all too aware that this is a slightly rambly-post, but I hope you understand what I mean. Have you tried pain management? And if so, what did you think?

Thank goodness it’s Friday! Best wishes for the weekend,

Heather x

Categories
My Life

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

Categories
Informative posts Studying at University with Disabilities

What Not to Say to Someone With Chronic Illness and Disabilities

Hello there, and thanks for stopping by! This is going to be a slightly unusual post today, but it’s something I’d really like to share with you all. As you may know, I have a form of cerebral palsy- mild spastic hemiplegia – and a spinal condition called Scheuermann’s kyphosis. These are long-term illnesses, with no cure, so it’s just about learning to manage and live with the associated pain and mobility difficulties to ensure I have a good quality of life. What has been really shocking to learn is that people assume they’re an expert of chronic illness and think it wise to give out tips and advice. I know, we’ve all been there, but it’s something that never ceases to amaze me! After all, I know my body better than anyone, and I know how my conditions affect my day-to-day life. I just thought I’d share a few snippets of advice I’ve often found funny, and usually unhelpful. Some comments are pretty hurtful, but I know some are simply well-meant.

Just to clarify, this is not a dig at anyone at all, and this isn’t intended as something to offend any well-wishers: I just think it’s helpful to realise sometimes things aren’t always what they seem and maybe we can all think before we say something to someone. You never know how your words are going to affect someone else.

‘Chronic illness? But you look so well! How is this possible!?’

I get this a lot. I really do. And whilst I can appreciate I do look ‘fine’ most days, it can be very frustrating to hear. Firstly, it makes me feel fraudulent. No, I don’t use a wheelchair, and even when I use my walking stick I appear able to walk normally and without difficulty. However, I spend the majority of my day in constant pain, and it’s really wearisome having to reiterate this. Secondly, there’s also the idea that if I’m dressed up nicely or have make up on, that I can’t really be that ill, because, you know, I’ve made ‘an effort’. Having chronic illness doesn’t mean you have no desire to feel good. I still want to look as nice as the next person, and when I feel like it I really enjoy wearing a little bit of lipstick now and again. It just goes to show that you never know what’s underneath it all. (oh, I also enjoy wearing a bright shade of red when I can…makes me feel I can take on the world, especially on bad days!)

‘Why don’t you try exercise? I’ve heard it really helps [insert illness here].’

I have couple of things to say about this one. What I do seem to notice is people often recommend exercise when they don’t really understand the condition. Last year, someone asked what cerebral palsy was. Immediately upon hearing this, they proclaimed that exercise would cure it. Funny…they didn’t know what it was prior to asking! Though I know exercise is fantastic, and I do exercise as much as I can to keep my muscles as flexible as possible (particularly in my hemi side) sometimes the nature of my conditions limits me in terms of exercises. Some I simply can’t do. Most others leave me in a lot of pain. People also assume that I don’t try/never have tried/that I’m unfit anyway. I happen to walk quite a lot, and considering walking is something I find challenging, (particularly with regards to the palsy) this can sometimes be very painful and very tiring. However, I always try. Sometimes I try too much, end up walking for miles (often in a bid to push myself) and subsequently suffer for it. What I’m basically trying to say is don’t assume exercise is the be all and end all. It can be brilliant, but think about it: if you’re in severe pain, would the first activity to spring to mind be a jog/some workout at the gym? No? Didn’t think so.  Also, I’ll add here that when I was at school I still used to take part in PE and sports days despite my medical conditions and difficulties. One memorable sports day I volunteered for a long distance running race. At school, very few people knew about my cerebral palsy, but when I crossed that finish line (I came fourth out of eight) it was amazing. I’d done it; I’d also competed against people with no mobility or pain issues. It was possible, but I won’t say it didn’t hurt. I can still think back to the feeling of intense burning, crampy, sickening  pain in my hemi leg that followed. The PE teachers gave me some little gifts to say well done: they appreciated how difficult it must have been for me and I’m truly grateful for that. It’s an experience I won’t ever forget.

‘Ah, get well soon!’

I feel bad about including this comment, because this is obviously well-meant and I appreciate the sentiment. However, it is difficult to explain to people that my conditions won’t get better. I have done this once or twice, and I’m usually branded a pessimist. I just call it being realistic: there’s no cure for either. They fluctuate on a daily basis. Yes, some days are better than others. But I will be living with these for the rest of my life, and I have (mostly) come to terms with that. I’m still sad I included this one but hopefully you’ll understand what I mean!

‘You’re just an old lady really!’

This really, REALLY annoys me. This reiterates everything I feel about myself. Some days I wake up in so much pain I feel like I’m years older. I can’t do normal household chores without intense back pain, I can’t go shopping without my body hurting and I can’t do ‘younger people’ stuff like clubbing without things becoming very difficult. Of course I enjoy a good dance every now and then, but it becomes extremely painful. The next day is an issue not because of the ensuing hangover (well, at least not the majority of the time) but because my body is tired…it’s tired of the pain. Don’t call me an old lady. It’s never okay. It’s one of these things that really get to me. Calling me an old lady basically confirms all my worst fears. I have a hard enough time thinking of myself in this way, and I’d rather you didn’t add to that.

‘You’re just lazy/milking it’

I just don’t even know what drives people to say things like this. I didn’t choose to have these conditions. I can’t help that sometimes I need rest and relaxation. Just try putting yourself in someone else’s shoes: do you think it’s easy living in pain every day? It is also well-documented that people living with cerebral palsy use more energy than an usual. It’s tiring stuff. The latter part of the above comment was one of the more hurtful things I’ve heard. When I was in school, I had to wear a spinal brace. This was extremely uncomfortable. I had to wear it 23 hours every day and the hour off was for showering/PE. Because it was hard plastic, it dug in everywhere, and I’d end up with bruised hips, itchy skin rashes and marks cutting into my skin from the plastic. It constantly forced my spine into an unnatural position, and this was painful. Wearing that brace was awful. I felt detached from my own life: it was like I stepped into a magazine and became someone else. ‘Will I have pain for the rest of my life? So, you mean it’s incurable? My spine might get worse?’ These were questions I found hard to ask and even harder to understand when I was thirteen. I was thrust into a world of painkillers, hospital checks, physio, pain management, and procedure after procedure. This was on top of my appointments for my cerebral palsy. Having people claim I was milking it was something I really didn’t need. How insensitive can you be?! The worst part is that a person who said this talked behind my back and told my friends I was ‘milking it’. At the same time, they’d be really lovely to my face and would offer to help me in any way they could. As you can imagine, hearing that was extremely hurtful, and I never really associated myself with them at all after that. I still avoid having to now, despite the fact we have mutual friends. Please don’t do this, ever. The last thing I’d ever want to do is feign an illness. If I had it my way, I’d be completely healthy and have nothing wrong at all. As it stands, I’m not. Don’t make assumptions because you don’t understand.It’s a comment that I haven’t ever been able to shake off since the age of thirteen, and I don’t think I’ll be able to forget it.

I know this is an unusual post, but I hope it has given you something to think about! On a light-hearted note, I have two huge bars of chocolate to get me through the last couple of weeks of essay writing. I know I can do this, but it won’t be easy. Wish me luck!

I’m getting closer to that finish line…

Heather x

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Informative posts My Life

9th April, 2015

Hello there, you lovely reader. If you’ve been catching up with my blog this week you’ll have noticed that I’ve been doing ‘Happiness is…’ posts to try and get me to focus on the happy things in my day-to-day life. I think when you deal with anxiety & depression on a daily basis you really need a reminder of the good things. It’s all too easy to get stuck in that suffocating perpetual darkness. However I’m doing a slightly different post right now because today has been really difficult and I think talking through it might prove somewhat cathartic.

My anxiety today was really, really bad. You know when you can feel it coming, so you desperately attempt to suppress it but find out it’s going to burst through anyway? Yes? That was today. It all started with a few events from yesterday. Last night I burnt my wrist on my left hand. I am left-handed but I also have a mild form of spastic hemiplegia (a form of cerebral palsy) in my right side. The easiest way to describe this is as if it’s a stroke; it’s exactly the same kind of thing, but because the brain injury occurred before my birth, it’s classed as cerebral palsy. Because of this hemiplegia it’s difficult to use my right hand, arm, leg and foot so burning myself fairly badly on my good wrist was completely stupid and silly. Of course I didn’t do it on purpose, but I wish I’d have been a bit more careful. Sigh.

So this morning in the shower I had to dangle my burnt left wrist out of the cubicle, whilst I attempted to wash my hair etc. with my hemi hand. This proved difficult, so much so I gave up after trying to lather the shampoo in my hair for 15 mins. I rinsed myself as quickly as I could and got out. I was frustrated with it. Having hemiplegia is really annoying and I didn’t realise how much I rely on my left hand until today. It’s almost like there’s a loose connection in my right hand, because you know what you want your hand/leg to do but it isn’t quite doing it. It’s like there’s something missing, something absent, something wired incorrectly.

Because of this I think I felt a whole lot worse than usual. Additionally, I had a bad, anxious night last night. So I shouldn’t be surprised that today was terrible, but there you go. I headed out to get my burn looked at in the pharmacy, having done my make up nicely (or so I hoped). Things were relatively fine with the anxiety until I realised I’d been sold the wrong type of product for my burn. Then, I tried to apply the thing I’d bought to my burn with my hemi hand. Needless to say I couldn’t do this very well so gave up. This further added to my frustration and because my anxiety was bad anyway, it started to worsen as I left the pharmacy. I was focussed on getting home, but generally I was okay if not a little annoyed that the product was not what I had wanted despite having asked for it.

A minute or so down the road, a balloon popped in my left ear as I walked past a cafe. This proved to be the last straw.

If anyone knows anything about neurological disorders, you’d know they often come with a healthy heightened startle reflex. Basically I jump at a lot of noises people wouldn’t even bat an eyelid at. Balloons popping, fireworks, gunshot and other loud bangs are really bad and I jump very suddenly. I can’t help it; I can’t predict if or when it’s going to happen. Some days I’m worse than others. It makes your heart beat really fast, gives you a feeling of fear and panic and becomes unbearable. Anxiety makes this reaction even worse as I’ve found out. I started to panic, I was really fearful and upset and I just needed to get out of the situation. I started to cry, things had got too much and I didn’t know what to do. I was alone. I tried to ring Drew but there was no answer. I cried so much I could feel my mascara running into my eyes and down my cheeks. I know I must’ve looked an absolute mess.

I hurried home to get to a safe spac, when luckily Drew rang back. He calmed me down, and I managed to stop panicking. I couldn’t believe it. Why had this happened? With my counselling a regular thing, I thought I’d got past this stage. It wasn’t just embarrassing, but incredibly disappointing. I feel like I’ve taken one step forward and ten steps back.

So today has not at all been very happy. I did manage to get some reading done, however, so that was a bit of a relief. I just wish I could get over these situations and get on with living life, without having to worry about popping into a shop or bumping into someone or any other trivial, silly thing. I’m hoping that tomorrow I’ll have some happy things to share with you.

I’m sorry for my long, poorly-articulated rant. I’m currently in bed surrounded by soft toys and Chinese takeaway, so please do excuse me.
I hope your Thursday has been a little bit more positive. I’m hoping tomorrow will be a brighter day.

Heather

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Hull Bloggers Informative posts My Life

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.

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Informative posts My Life Studying at University with Disabilities Things I'm loving

The Importance of Relaxation

I have to admit I’ve always been a stressed out, anxious person. It’s in my nature to worry about everything, and sometimes this worry is completely overwhelming and all-consuming. Coupled with chronic pain, my anxiety can spiral out of control. Being in pain almost constantly is physically exhausting, and can really affect you mentally. When I was younger I acted as if my cerebral palsy and Scheuermann’s didn’t exist. I think this was my ‘coping strategy’, but of course I wasn’t really coping with anything at all, I was just denying the existence of my medical conditions. Since moving to university I’ve recognised this, and during the past year or so I decided I needed to really work out a way of coping with the pain and stress that comes along with chronic medical conditions.

I cannot emphasise how extremely important it is to have rest days and to relax your body and mind if you’re dealing with a health condition such as cerebral palsy. Even if you’re not living with a chronic medical condition, you still need to give yourself time out to truly relax and to forget the worries in your life. When I was younger I thought it was perfectly fine to be completely wiped out from exhaustion after a day shopping, or to be in agonising pain after sitting to eat a meal in a restaurant. Yes, it’s normal for me to be in pain, but my body needs time to recuperate and get back to its normal self. There’s a few ways I do this, and I thought it would be a useful thing to share with you all.

Heat therapy is so relaxing. From a bubbly hot bath, to a hot water bottle and my trusty heat pad, heat therapy is soothing and relaxing for my body. I particularly like the homedics range and I own the shiatsu back massager, shiatsu neck massager and hand held massager with interchangable massaging heads. Below is a link to their products through boots: http://www.boots.com/en/Homedics/

I also love the heat packs that you heat in the microwave. I own a particularly cute one in the shape of a cuddly rabbit! These are relatively cheap compared to the homedics range, and can really help on sore days.

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Having hot baths with some pamper goodies can really help me out, too. The Body Shop stock some gorgeous products and you can always find lots of voucher and discount codes online if you type in ‘body shop codes’ into your search engine. Using high quality pamper goodies doesn’t always have to break the bank, so stock up if there’s a particularly good offer on. Recently my boyfriend purchased £40 worth of products for £20, which is an absolute bargain!

I also love candles. When I’m needing a rest day, I’ll get some reading together and spend the whole day in bed, taking painkillers as and when I need to. Putting a few candles on can really create a lovely soothing atmosphere. I also love my mooncandles, which are flameless and battery operated. You can change the colours of the ‘candles’ using the remote they come with, and they’re really very pretty. I purchased mine from Tesco. You can also purchase them online. I apologise for the picture, but it’s very difficult to capture just how pretty they are on camera!

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Having de-caffeinated drinks is a must when I’m feeling anxious or in a lot of pain. Though I thoroughly enjoy coffee and tea, I find herbal teas are particularly soothing on a stressful, painful day. I love Twinings Camomile and Honey, or the Twinings Peppermint Infusion. I was also introduced to Peanut Hottie at the Hull bloggers meet, and this is becoming a firm favourite. If you’re a fan of peanut butter, I suggest you give it a go!

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For my 21st birthday, I was spoilt rotten by all my wonderful family and friends. My boyfriend did make me a desk top zen garden as one of my gifts, and I’ve found it a really lovely way to relax. I wouldn’t say I’m particularly into the concept of zen or Buddhism, but raking the sand whilst stressed is a great way to relax yourself. Plus, it makes for a very unique object and you can create lovely works of ‘art’ in the sand with a mini rake. Zen gardens are available to purchase ready made online, however my boyfriend made this out of a photo frame. He glued the glass into the frame and turned the frame over. All he had to do then was buy the sand and objects to go into the zen garden, and he let me assemble it myself. It’s such a thoughtful gift, and it’s a true pleasure to own it. For secret Santa, my housemate thoughtfully bought me an oil burner with a selection of essential oils. This is such a fantastic gift for me and the essential oils create a soothing atmosphere in my room. Alongside my zen garden, it creates my very own relaxing space, and it’s really great!

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Buying a bouquet of flowers or a plant for my room instantly brightens up the place and so makes me feel more relaxed. I loved these gorgeous yellow roses. I arranged them in my marmite tea pot, and I thought they looked really lovely.

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I hope I’ve given you some inspiration. Hopefully in no time you’ll have a relaxing place of your very own!

All the best for the rest of the weekend,
Heather

Categories
My Life

Feeling Human Again

It’s been an extremely busy few weeks and I’ve really struggled to make time for myself, but I’m glad to say I’ve managed to get through it. I’m in third year at university, and whilst I won’t say that I think the content of my course necessarily gets harder, the workload has definitely increased and so I’m spending more and more time trying to get everything done! I had two essays due in this week, one for the Monday and one for the Thursday, so as you can probably guess, I’ve been doing nothing but staring blankly at my computer screen, so blogging was completely out of the question! However, these essays formed the last two assessed pieces of work for this semester, so I’ll be able to gradually get back into a routine in no time.

There are a few posts I’m looking at publishing over the next week or so, and some are a slight departure of what I’ve written previously. Firstly, I was nominated for a Lovely Blog Award a while back, so I’m going to crack on with getting that sorted, which should be great! I’m also going to be involved in a fantastic opportunity tomorrow (and I’m extremely excited about it) because I’m heading to my first ever bloggers meet! It’s going to be a fantastic day, but it don’t want to give away too much so I’m going to post all about it after having met all the lovely, wonderful people who have made it possible and I’ll share with you what we did over the course of the day. It will be such a fabulous end to a hectic week! You can check out what were all tweeting by using #HullBloggers . There’s also a great blogging opportunity at the minute called the ’30 Day Book Challenge’, and since I study English Literature you can probably gather that I really enjoy reading. I’m going to look at starting this over the next week, too, as I think it’s a really great way to see what other people enjoy reading and it may give you some inspiration. Finally, I’m hoping to share with you my tips and techniques to help with keeping stress at bay, either during assessment time, or particularly stressful periods at work and/or home. Because I have to always take into account my cerebral palsy and my back problem during my studies and everyday life, I can end up in a serious amount of pain during busy, stressful periods, so I need to make sure I have the techniques in place to deal with my stresses and worries (which are further magnified by my pain). With greater stress comes greater pain, so I hope I can shed some light on my own de-stressing techniques which you may (or may not, of course) find useful.

So until then, I hope you all have a wonderful weekend and take care of yourselves in this chilly weather!

Heather

Categories
Informative posts Things Cerebral Palsy and Scheuermann's Related

Life can be a pain, sometimes

I say this with all seriousness. Life can be a pain for anyone, of course. There’s the usual stressors of everyday life, sometimes there’s issues with friends and family, and sometimes there’s problems at work.

However, for some people, life isn’t just a pain: life can be painful, too.

Having Scheuermann’s disease and cerebral palsy means that I live with chronic pain. Though it is a common misconception, having chronic pain doesn’t necessarily mean the pain is severe; it simply means that the pain lasts for an extended period of time (the word chronic is derived from the Greek ‘chronos’, meaning ‘time’). So, to put this into perspective from my point of view, if I’m talking about my back pain, I haven’t been free from that for over seven years now. That’s right. Seven years of pain occurring pretty much every day. So what does this constant pain mean? How do people living with chronic pain cope? And finally, how does it affect the way I live my life?

I’ve always found it difficult to articulate what living with chronic pain feels like. I’d like to say that the expectation of having pain is a constant thought in the back of my mind. Pain is the last thing I feel at night, and the first thing I wake up to in the morning. Yes, it hurts, of course it does, but there’s ‘good’ days and ‘bad’ days. There’s days where the pain is barely noticeable, but there’s days where the pain is all consuming and it stops me doing normal things. I like to think of my pain as a Bunsen burner flame. Like my pain, the Bunsen is always on; but the flame burns more strongly when you add oxygen to it. Like the flame, when I do too much (just adding more oxygen to the Bunsen) I can exacerbate my pain levels, and the pain becomes ‘stronger’ or worsens.

Sometimes this happens without prior warning. I don’t necessarily have to have done anything in particular to exacerbate my pain, (this can be really frustrating) but there is usually a reason why. Silly, I know, but sitting for an extended period can exacerbate my pain levels, as can standing for too long. I’m constantly needing to strike the perfect balance. If I go for a long walk, I have to be prepared that I may be in more pain as a result, from both my Scheuermann’s (abnormal curvature in my thoracic spine; I’ll explain all in a later post!) and cerebral palsy. It’s a really odd thing to talk about, and it sounds so silly, but I’m constantly aware that each day will bring different levels of pain. Being in constant pain means there are things I cannot always do, though when I was younger I tried to ignore the fact I wasn’t necessarily able to do everything that I’d like to. Going to the cinema is pretty painful, and as much as I like going out to eat in a restaurant, the extended period of time sat down means that can become quite a painful experience. I’ve recently had to accept that going out clubbing isn’t really the best thing for me. Being on your feet all night coupled with the fact you’re constantly being pushed into by drunk dancers doesn’t make for comfortable entertainment! Studying for university can become difficult, but I’ve learnt to deal with it by constantly working and reading, so that if I need to take a day off then I can.

There are various ways I cope with my chronic pain, so I’ll try to list them;

1) take painkillers as and when I need them.
I’m prescribed quite a hefty amount of analgesia, but only take tablets when I feel I can’t cope. I’m often described as having my very own pharmacy in my room, and I can’t necessarily dispute that!

2) use heat pads/various other heated products
I have a heat pad that brings great relief when I’m struggling. It’s basically like a miniature electric blanket and you can adjust the heat setting. My dad bought mine from Boots and it was such a great buy!

3) learn to take it easy
This has been really difficult for me. I’m quite an anxious person naturally so I tend to want to rush so that I get everything done as quickly as I can. In light of this I’ve learnt to give myself a break when I need it. Living with constant pain can be extremely draining both physically and mentally, and I need some quality time to recuperate.

4) have the occasional glass of wine
I’m not saying this and justifying it, however I have found that if I’m not prepared to deal with the side effects of my medication when I’m really bad, (drowsiness, euphoria, itchiness) I’ll have a small glass of red wine maybe about once a week. I don’t drink a lot of it, but I do notice it definitely helps to relax my sore muscles.

5) be happy!
Though things can be difficult at times, I’m truly happy and extremely privileged to live the life that I live. I’ve had a lovely upbringing, been to school, achieved great grades and I’m now studying at university and I’m expecting to finish my final year in 2015. Trying to keep happy means I take time out to do things purely for the pleasure of doing things. I like to watch rubbish telly in bed, I like to have the odd takeaway and not feel bad about it, and I like to spend time with really supportive friends and family. I’m very lucky that the university I attend is really supportive and adjusts things as and when I need. They’re truly great and I know if I’m having a particularly painful day I can inform my department and know that there’s support there if I so need it.

Living with chronic pain does mean I’m constantly accounting for ‘bad’ days or ‘bad’ parts of days. I found a theory someone came up with to describe this, and they have described it so wonderfully I don’t think I could possibly add anything more to it. It’s called the ‘Spoon Theory’ and was created by Christine Miserandino. Click on the link below to find out more:

The Spoon Theory written by Christine Miserandino

I’m aware that this has been a pretty long post, and if I’m honest I could add so much more to this and be writing for days. However, I don’t expect any of you would have the patience to read it (I know I wouldn’t!) So I’ll stop there for now.

Best wishes and I hope your week is going well!
Heather