Disability & Chronic Pain

Make May Purple: It’s Okay To Not Be Yourself Post Stroke

Posted on 3 min read

girl looking on in thought wearing conquer stroke and strong af pin badge

To mark the end of Stroke Awareness Month I wanted to Make May Purple with a cessation of time that never really takes a backseat in a stroke survivor’s world (I had a stroke, if you didn’t know! I also hope sarcasm translates just as obviously.)

Post stroke is an oblivion of why and how and what next. It’s a life shaped hole where normality, good health, and an unscathed brain used to nest; paralysing to the mind and the body and if you listen to the over-ticking of .your own discouraging and often forgetful thoughts, a smidgen of your soul. Opening the front door of your home-home and not hospital-home is a new borderland of fear and apprehension and uncertainty. Putting the working foot forward with the dormant one drifting behind with a trailer of physical limitations, emotional instability and a weird state of limbo attached to the back.

The stroke itself isn’t the painful problem, You sail through that surprisingly effortlessly without feeling the impact of your kinetics quite literally shutting down; but I guess you have no choice in that matter. It’s the aftermath that brings the overload. It’s knowing a part of your cortex has died and feeling like your identity has, too. Here you are, with a sudden burden of change. Your blood decides to stop flowing and transports that scarcity to the rest of you. Your limbs, your control, your sense of freedom. Coming to terms with this new dysfunctional beginning isn’t an easy ride. Neither is being trapped in a body plagued by fatigue, stupor, neurotic sensations, and a constant state of panic, anger, and sorrow.

I remember so vividly screaming at the top of my lungs towards my mum. It was around mid 2011, a few months after my stroke. Where a sudden switch had flicked from embracing this fresh lease of lucky to be alive, to anxiety so bad I was locked in. I don’t even recall what caused that final blow up. All I know is I was too hyper aware of my sensations and the slightest tingling twinge made me adamant it was happening again. I couldn’t speak. I couldn’t breathe. I couldn’t stand. The only thing I could do was hysterically exclaim I need an ambulance resulting in sitting in A&E for four hours as I gradually but steadily regained sentience and was brought back down to earth.

I was fine, of course. It was just one of many massive panic attacks. That only improved when I attended regular Neuropsychology therapy sessions and grew into someone who has mastered the difference between my stroke affecting me long term and my stroke having that dominating hold over me. I’m over the feeling sorry for myself. I’m over the obsessive worrying. I’m over lashing out to people whose fault it isn’t. I’m over being so tense I couldn’t sleep at night. But let me tell you when I say almost 9 years later that period of looming antipathy is still hovering waiting to attack when the defence drops, the mask slips and the questions of ‘when will I be found, picked up and delivered some fortune’ appear; like a queen bee awaiting honey.

How much damage is done? Will my life ever be same? Will I still be able to achieve my dreams and my goals? Own a house? Earn enough money? Get married? Ever be fully independent? Have babies without fearing death? Is my life expectancy shortened? Does anyone even care to understand?  It’s those that creep up and crash into my road to recovery when I least expect it.

The thing is, I am a different person to the one I was before. My system is malfunctioned. That’s a stone cold fact I now proudly own but it doesn’t have to docket me a victim. It means I’m a trooper, a survivor. I’ve developed strength and resilience I never knew I had. I’ve restored and rebuilt. I’ve adapted to the updated version of my unforeseeable but reframing experiences. I’m topsy-turvy but with an improved outlook on empathy and wisdom and gratitude and just purely living for the present. And you can too.

What I’m trying to say is it’s perfectly normal to feel short of that semblance of solidity. It’s okay to feel unsure and scared and tearful. Those feelings are completely justified by the stroke storm that spiralled into your life, your routine, your plans and erupted into volcanic upheaval. The trauma to your brain was literal, so it makes sense that it’s perturbed mentally as well. Essentially, you’re mourning for your old life. The fit and active, sociable, attainable,less isolating, misery, pain, and struggle free life. Don’t discredit yourself for allowing that unnerving introspection to rear its head and pop in and say hello but be aware of when healthy becomes unhealthy and rational becomes irrational.

I’m at that point now where I don’t remember what it was like before. I’m so accustomed to my quivery eye, my deadened left hand side, those funny whooshing, creeping sensations, and my central pain that I dread ever having to revert back – because that’s who I am. That’s who stroke survivors are. We’re an abstract painting of cognition, each graphic representing a time we’ve overcome the worst.

Because brain damage isn’t always an accident on the motorway and a coma for 6 weeks. It isn’t injury or crime or disease. It isn’t always visible to the eye and it isn’t an invitation for pity.

It’s me. it’s you. It’s us.

Share

Dating and Chronic Illness: A Match Made In Hell?

Posted on 9 min read

dating and disability

When I think of my love life, I think of a tumbleweed rolling down a parched country road excreting depleting levels of energy at its slowest rate. Tortoise-like. With a hollow shell. Dried of concrete connection. Also known as, me. Just like my career prospects, my nightmare of a neurological disorder has relentlessly affected that part of life that falls into place naturally for most people. Dating. Relationships. Getting down and dirty. Finding the one. You know, the works.

I don’t talk much about my lack of romance. Mainly because it’s purely that – lacked and illusive – but also because I prefer to conceal the semblance. I like to think people see me and surmise my life is rich with opportunities to meet handsome men and allow them to whisk me off my feet. An average modern blonde with a dictatorial voice and a passable pair of boobs. It’s just better that way. More comfortable, convenient, and congenial. But it’s far from the truth and it’s about time I opened up about a factor that does run cynically through my mind at a much faster pace than the tumbleweed.

I’m forever in a perpetual cycle when it comes to dating. Contemplating whether to just rip the plaster off and take the plunge. Download Tinder and embrace the cringe. Approach someone with some dutch courage companionship on the sporadic occasion I’m out in a bar slyly giving the eye. Place the deceptive mask on that covers the face of someone who’s actually pretty damn petrified.

The torrent of excuses take centre stage to quash the deep-rooted factors that prevent that sense of freedom and stature when working towards putting myself on the market. I blame it on my awkwardness, my social anxiety, and being an undivided commitment-phobe. The accurate but hyperbolic fact that I’ve had to primarily look after myself and my deteriorating health since I was 17 years old and I haven’t had the time or the stamina to search for love. Realistically it’s the fears and the inhibitions of pouring my life into an overfilled rickety bucket and emptying it out to someone, the dread of rejection, the perturbing thoughts that emotional attachment and exposed vulnerability will only lead to further isolation and dejection.

Dating is difficult at the best of times. It’s not an easy ride. Not that I have much experience but I know what it’s like to live in a spiralling world of orthodoxy. To follow the journey of determining that special someone is overwhelming for the healthiest of people but finding that eligible individual who both vibes with your interests and your personality, and understands that some days they’ll have to refrain from touching you because you’re curled up in a ball paralysed with a pain flare, is balancing on the edge of implausibly impossible.

Dating with a disability? Yeah, it’s a whole other ball game.

dating with chronic pain
Having a chronic illness that impacts the conventional functions of everyday has to become a significant part of you and often that plays a part on what you choose to divulge and who you choose to divulge to. My nemesis is I prefer to keep that version of myself secret when that version isn’t even a periphery, it’s who I am. Avoiding the situation is much more uncomplicated than finding common ground with my regular psyche and the Antichrist infarction on my brain that’s doing 90mph in a 30mph zone.

The apprehensions of dating with chronic illness is well rounded. Not just with scientific knowledge but from general prevalence and of course direct word of mouth. There are so many conflicting elements that contribute towards that shakiness surrounding dating when you’re physically unable to do what all your healthier peers are doing.

When is the right time to reveal your condition?  I don’t even think there is an ideal opportunity to bring it up in casual conversation. How the bloody hell do you introduce yourself at a first meeting? Hi, I’m Bridie, I’m already extremely doubtful you’ll fall in love with me but just to deter you further – I had a rare form of stroke as a teen, was robbed of my youth, and am still struggling through each day with erratic, incurable, debilitating pain and a severe serotonin shortage. Oh, and I can’t feel the left hand side of my body either. Also if this somehow miraculously manages to progress into a real relationship there will be a good proportion of guaranteed days I’m cooped up indoors ugly crying with a dishevelled appearance and an unresponsive manner. I’ll probably even spitefully push you away because there’s nothing to thwart my substitute emotion of sheer anger.  So sexy. Very alluring. Not off putting at all.

It’s that unabating dilemma of what you should give away with those first time questions. Especially the big statutory one. The instant ice breaker of “so what do you do?” – a piece of cake for your average Joe to answer but a gulp inducing freeze frame for me. Where do you start in telling someone you don’t have degree level qualifications or a stable job or a wealthy sum of earned income and have spent most of your development to adulthood sat in hospital waiting rooms or on your single bed contemplating whether you can go on living in this state? How do you broadcast your desperate nonstandard freelance schedule of grabbing any modicum of work – even lowly commissioned tosh – because you can’t afford to turn it down nor stand the sight of another declined email and ignored pitch? How do you even begin to explain about those pencilled plans crushed by the weight of your monstrous malady? And more importantly, how do you inform the person facing your camouflaged crestfallen reflection with hope and intrigue that you rely on the government and your mum to get by as you doubt you’d be able to cope single-handedly. Ambition and success and stability and independence is attractive. Not being stuck on a demoted loop with no certain direction for the future, figuratively glued to your home turf making it even harder to meet new people and socialise in the ordinary.

Pain is problematic because it’s invisible and explosive and you can’t detect when it’s going to strike. My outer image to a blind eye is a picture of promise and prosperity enlarged into an exhibit; a deceptive canvas for passers by to criticise. Being disabled means you really have to be cautious of the ignorance and judgement that can shed from an obliviously unacquainted person. Pain could hit me unexpectedly halfway through a date and suddenly the concept of smiles and fun completely vanishes. Or I could organise a date when I’m feeling up to it, have to cancel two hours before, and abort mission completely; and I can only imagine what that would do to some fragile masculinity with a pinch of utterly wrong impression sprinkled on top. It’s not just the pain that’s unpredictable, it’s not knowing when someone is desperate to run for the hills despite what their mannerism may exude. I already feel like damaged goods, that devalue tripling in dominance isn’t something I’m particularly keen on reaping.

It’s not just the pain presented on a platter, it’s the ensuing pattern of things that coincide unavoidably. The moods. The depression. The seclusion. The self-esteem. The negative body image. The broken sleep. The constant exhaustion. The limitations and boundaries. The extra challenges. The doubts that creep in; as soon as you gather up the courage it’s an automatic ‘am I really cut out for this?’. The scepticism and internal debates without an audience. What if they think I’m a boring PG freak? What if they get fed up of me complaining too much? What if one day they just decide my unhappiness and inability is unbearable and up and walk? What if they’re just feigning interest because they feel sorry for me? How do I embody this new fraction of my life without scaring people away?

I know full well I’d receive the stereotypical response, all the stuff you’re supposed to say, the “none of that matters” and “it makes no difference” but I know otherwise. I’ve carried this burden for 8 years and I wouldn’t want to introduce this unpleasant reality to anyone ill-suited or immature. In fact, nobody would want that.

dating with chronic pain
All of those afflictions and trust issues contribute to the embedded precept that finding love just really isn’t worth the physical and emotional energy. Kissing the frogs to find my prince isn’t even a durable enterprise when I can’t bring myself to conquer those qualms on the first batch of tested tadpoles. It’s better to be alone and continue disappointingly letting myself down than it is welcoming unfamiliar and incalculable ingredients into the mix.

I’m well aware this screams repressed ableism, self-stigmatisation, and an immeasurable dash of internalised self hatred but it’s a manifestation for me. I’d forcibly chastise anyone else being this harsh on themselves but it’s how I feel and I can’t dispose of the gnawing torment – because the reality of your body failing you is that it rips you of worth, beats you down, and piles on a myriad of emotional issues. I find it so unsparingly hard to see, designate, and unveil the ‘me’ within the haze of searing pain and surrendering fatigue. I’ve become a solitary detractor bordering on executioner and that irreversibility has proved to be just as inconceivably destructive as the pain itself. I know there’ll be plenty of chronically ill people dating or in committed and wholesome partnerships and I both envy and salute those who have defeated that stage of fundamental frailty. I only have myself to blame because I purposely don’t put the effort in – but with those weighted barriers on my shoulder as I stumble along the path of alienation, it’s just another obstructive side effect to my illness.

I’m 26 next. The societal scale tells me I should hurry up the dating game – offer myself out with a confident and unfaltering aura – but how do you do that when you’re still figuring yourself out? Still deeming what permanent puzzle piece can slot into your jigsaw wreckage? Unveiling my body is unimaginable. Not that you can physically see my problems but to me you can. It does seem palpable because I’m conscious of what’s happening thunderously inside. Picturing myself settling down, finding the perfect match, someone who is willingly volunteering to sign up to every facet is unthinkably bizarre. Not just because I feel undeserving and not good enough but because it’s been me, myself, and I for almost a decade now; I can’t imagine anyone entering the main plot of my story, taking over care and control of my territorial nature. The ‘there’s someone out there for everyone’ notion just doesn’t decipher in my detached world.

The one thing I have learned in being a sad and lonely singleton (now I do joke, it’s not that miserable) is that saint valentine forgot cupid’s arrow and struck me with an introversion instead. In a way, it’s helped. It’s helped me take time for myself selfishly, be content with my own company, and not force dependency on anyone else. It’s allowed me to know my worth. To not settle for less than I deserve. That being someone who will understand how much I’ve been through, go above and beyond in proving me wrong, and accept me and all the baggage that lugs along.

I have no idea whether that person will be introduced into my sphere anytime soon. I don’t know what the future holds and I definitely can’t foretell whether I’ll beat these battles and let my guard down but it’s okay because we’re all the same in that department; with health problems or without. Everyone has those insecurities and struggles and jitters about what will happen next whether single or taken or just simply dating.

Yeah I may end up a spinster. Or I may become a reputable inventor when I devise a dating website exclusively for spoonies (this is a serious suggestion, imagine how easier it’d be to meet those likewise who *get it*?? Dragon’s Den I’m coming for you)  but all I can really is do is keep moving forward when the sun rises and push through misadventure to create a rapturous pursuit or two when that big ball of light turns dark.

Share

Shop My Favourites

Exercise and Chronic Pain – The Be All or End All?

Posted on 7 min read

This post is a sponsored post written in collaboration with Jack Wills

For most able bodied people, working out is a simple decision of “Do I fancy going to the gym today? Do I move around from the comfort of my own home? Or do I just take a short break and continue with my usual exercise routine tomorrow?”. For able bodied, perfectly healthy and laboriously agile people, it’s cardio and weights, it’s exerting yourself with high levels of fitness, it’s feeling the burn in a beneficial way, walking away from equipment feeling pumped and energised and full of satisfaction.

For me, it’s daydreaming about getting into shape this way from my designated den of duvets and static rest. It’s making the most of the athleisure trend by using it to my own self care and comfort.  It’s browsing the likes of go to high street retailers like Jack Wills for Women’s Joggers wishing I could make the most of the casual comfy wear by going out for a run with amenity instead of slugging about like a zombie acting out and attempting to desperately find relief. For me, it’s so much more than an impulsive, quick, get up and go, and I think for most spoonies it’s a similar situation every single day.

When you have a chronic illness and/or chronic pain, being mobile and frequently physically active is tougher than it appears to be and is advised to be.

With the amount of times I’ve had family and friends, ill-informed individuals, and even healthcare professionals tell me exercise is necessary for recovery, insist that I need to build up my strength, get my limbs moving, condition my muscles, and help me escape my mind for a while, I could start up a booklet of failed advice not to give to a person who already struggles with knowing irreversible brain damage has impacted their life for good.

(And the rebuked stare that follows when I inform them increased activity will do nothing but elevate my pain is just as priceless, tbh.)

Speaking for myself; it’s so hard to explain to people about the kind of pain I have. I tried to get my thoughts and understanding out when I revealed for the first time that I was a stroke survivor, but nothing really compares to the right here, right now sensation.

My pain is not coming from the joints or the limbs, it’s coming from the signals in my brain that can’t pass through properly causing haywire to the left side of my already impaired body. It’s burning nerve pain; sometimes moderate, often severe, even excruciatingly intolerable to the point I’m flopped out unresponsive to the normality of the world around me.

It’s not just a few aches or a strained ligament that can be cured by popping a pill, changing my posture, or with a good half hour on the bike. I will always have seriously debilitating chronic pain no matter how much exercise I do or don’t do!

The tale of exercise allowing people to reduce the awareness of pain and enabling you to overcome limited functioning isn’t always true and the guilt that comes with not being able to apply this to your own self is only set out to discourage you further.

There’s only so much we can hear and bear before we combust with frustration in a plea to stop throwing this mentality on to us when only we know the utmost of what we can and can’t do.

I think when you unveil the fact you have chronic pain, somehow it’s automatically labelled and linked to one solo category but there is no such thing, a generalised type of pain is non existent.

Exercise is complex but so is chronic pain.

There isn’t a universal division and everyone is different – different abilities, different conditions, different triggers, different perceptions. What applies to one person may not apply to another and that’s important to remember when considering how you can balance your movement with your pain.

Some days obviously are better than others. You most likely will be able to do more one day and nothing at all another and that’s what makes it more difficult to judge.

I remember putting myself through agony and pushing myself above the passable scale a few years back as I committed to an intense plan that would be hard enough for anyone to achieve, never mind someone with disability, and it did start to rule my life.

Was I happier with the appearance of my body? Yes. But was I suffering greatly without a breather? Double yes. Which means in the long term it just wasn’t worth it for the sake of my own health.

Now, as the years have rolled on, I feel like my pain has worsened for many contributing factors – but the lack of exercise certainly isn’t one of them.

I’m not going to miraculously find a cure by hiring a personal trainer or signing up to the gym – in fact that’s just two of the issues we do face with chronic and often unpredictable suffering.

Committing to a session or a dedicated sport just isn’t feasible when you have no idea how you’ll feel when waking up in the morning, not to mention the after effects, and the scary thought of being within an environment where everyone around you is strong and able and you’re just… not.

I mean, dedicating 5 days a week to hitting the gym and working your arse off? No way. I’d be extremely lucky to go 5 days without collapsing with exhaustion!

Truth be told, the last thing on your mind when you’re in agony is to get up on your feet and start bouncing around. (Hey, half the time I can’t even move from my bed and when I manage it, all I do is move to the sofa).

You do have to remind yourself the no pain no gain agenda does not refer to a person with chronic pain who just cannot exercise on the regular due to the inflation of pain it inflicts.

Look at it this way, when a sportsperson develops an injury they are immediately withdrawn, stop carrying out activity, and are told to rest up. Their hindrance will affect their performance, and it’s exactly the same for us spoonies.

Now, after that very lengthy interpretation (and a little bit of a rant, you know me once I get started) I also want to point out that although having a chronic condition may restrict you, it doesn’t necessarily mean you’re completely inoperative and goals are unattainable.

As I said, everybody is different. If you feel as though you can manage some gentle exercise, go for it! If you know full well it’s going to aggravate your pain, then don’t put yourself into that downfall position. You have to decide in your own time, pace yourself, live within your limitations, and work in your own range for your own good.

There’s plenty of things you can do and it can be so helpful to find your direction and your own stepping stone. Little and often is my motto and I stick to that in line with my body – I listen to what it’s telling me and I go without force.

It doesn’t even have to be the actual and typical exercise (you know, the yoga, the meditation, the treadmill, the push ups and the pull ups) it can be something as simple as taking 5 or 10 minutes out for a walk, stretching yourself out as you lay in bed, raising your legs, or on the bigger scale – swimming, hydrotherapy, and other water based activities that may provide some relief.

It’s a great way to recharge yourself and gradually build your stamina, even if it is for a short amount of time or if you can only manage a couple of steps. Anything is better than nothing and any improvement is praise worthy. It doesn’t have to be all or nothing or a mighty challenge it just has to be achievable for you. Progress has to start somewhere and there’s no time limit in reaching that.

This is all from personal experience and believe me when I say I know that getting up and taking a shower is an accomplishment to be proud of in itself! Any sort of activity when you’re bed bound is definitely something to pat yourself on the back for but it is such a positive thing to have that little implementation in your life that does grant you a way to stay and keep active (and there’s plenty of useful resources online to guide you if you’re stuck in limbo).

Despite me stating exercise can often have the reverse effect on someone with chronic pain, there’s absolutely nothing wrong with making the most of those days you feel better and well enough to take a stride forward towards supporting your body in becoming more supple.

Exercise is proven to have so many healthy advantages, both for the mind and the body.

It’s a great way to de-stress which in my case can help reduce pain and it can release those endorphins to make you feel happier which in time can also be vital to how your brain reacts to pain. If in a steady, stable routine, it can boost your energy and motivation meaning you’re able to feel more alive even in those times of despair.

Depending on your type of pain, it may actually be able to aid the tension and stiffness to relax and reduce those pain levels. It can rejuvenate your skin, it can increase brain memory, assist your needs if handled with care, and most importantly give you some control which isn’t always present when trying to manage a long term and permanent medical condition, alone.

But, in the end and when taking everything into consideration, you’ve got to always be mindful of the fact exercise is supposed to make you feel better, not worse.

Share

The Seven Common Myths and Misconceptions of Chronic Illness

Posted on 8 min read

I vowed to myself before the clock struck midnight on the 31st December 2016 to indicate a new year and a fresh approach, that I’d be more open about my crusade with chronic illness and incurable pain over on my blog. Not just because it’s therapeutic for me mentally to let those burdens go but because for years I’ve felt alone with the stigma and misconceptions that tend to surround long term health conditions and I want to offer that supportive hand and reminder to the fellow spoonies who are at the forefront of these false statements that you’re not on your own – because, ultimately, a perfectly well human being with no experience of often unintentional but still deliberate discrimination against the sick and disabled do not have the right to paint you in a bleak light, to tell you how you should be feeling and to make negative assumptions on how you live your life alongside your illness.

 

You’ll know my tone of writing often lingers on to the lighthearted comedy side, not because I can’t do serious but because serious can often mould into despondency and I don’t believe speaking out about well-being has to necessarily be sombre and cursed. So, for this, I chose to express my feelings in typical Bridie manner – straight to the point but with a strong scent of sarcasm. I hope it resounds somewhere deep within!

 

“You’re wearing a full face of makeup and are well up on the latest fashion. You must be perfectly okay!”

 

What if I told you, your appearance and the way you carry yourself does not singularly define your physical and/or mental condition? Is it a shock to hear you can feel and look good despite not actually being good? Wearing makeup and taking an interest in personal style is just a part of me that’s separate to the reality of my struggles, it doesn’t represent anything of how I feel physically. With the small amount of energy I do have I can perform a miracle on my often drawn, exhausted face, an experiment with the latest lipstick and flippant couture can at least make me feel a little better and happier because in my makeup and clothing collection is where I can find myself, the person I used to be, the one who can still shine despite my attributes and qualities fading as the days go on. It’s so easy to lose track of your identity when you constantly have to put your health first and sprucing myself up after weeks spent laying in despair is a way to carry myself out of that fog. It’s not about giving false impressions, covering up, or pretending, it’s about having that one interest and hobby you’re still capable of enjoying. Admittedly when my pain is at its worst I’ll sack it off and stay bare faced in my pyjamas but despite our illness, we’re not completely incompetent. We don’t have to let ourselves go because our bodies are rebelling against us and we certainly have nothing to prove. So, the next time you get that judgemental, dismissive side eye from a medical professor, or a sly comment from a misunderstood ally who reckons if you really were that ill they’d be able to tell just by looking at you, then feel free to kick them up the arse with that high heel that is worn purely for your own esteem, not because you’ve found a fundamental cure through luxury cosmetics (trust us, if it was that easy we’d be following in the footsteps of Jimmy Choo or Charlotte Tilbury by now).

 

“You managed to go out for a meal the other night, functioned normally and had a laugh. Surely it can’t be that bad?” 

 

Just in, newsflash headline: Chronically Ill Individual Leaves Home… because *shock horror* I still have legs, I still have to eat, and I like to make the most of my best days surrounded by the people who perk me up the most. What you don’t see is the aftermath, the following days spent in agony trying to make sense of why I have to be punished for relishing the precious elements of life. Making the wise (or not so wise) decision to have fun is always a challenge to a spoonie patient; chronic illness and social events aren’t a corresponding combination and truthfully, I’ll often push myself knowing how I already do or will feel because sometimes you have to convince yourself that swanky invite or opportunity makes the inevitable suffering worthwhile. Chronic pain and chronic illness are unpredictable and unscheduled, we don’t mark it on the calendar; 10th February I’m going to head to the shops, 11th February I’m on bed rest. Half of the time we attempt to build ourselves up in preparation and the other half it’s just sheer good luck that we’ve woken up to a brief relief. What you see on the outside is almost always opposite to what is happening on the inside. You sense I’m functioning normally, I’ve just learnt to act as though nothing’s wrong.

 

“You never say a word, I haven’t heard you mention feeling ill in weeks so you must be slightly better at least?”

You wouldn’t believe me even if I did tell you how easy it is to hide behind a mask, be totally crushed on your inner and outer shell and still portray a solidified smile without a whisper. Most of the time I don’t want to feel as though I’m complaining excessively, so I’ll just choose not to tell people how I feel and how my symptoms are affecting me; often only opening up to those I can completely trust and still, it’s downsized in severity. Silence speaks volumes when you’re consistently hurting. It takes an idiot to dramatise or ‘fake’ being ill but to fake being well, that takes a journey you can even convince yourself with eventually.

 

“You get to sit at home, be lazy and unproductive, laying in bed catching up on all your favourite TV shows and seeing friends and family when you please. What a great life!”

To put it simply: I have two words for people who speak so insensitively and it’s not thank you. You know what the reality of chronic illness is? Having a ton of plans and ideas you want to put into practice but being instantly knocked back by the intensity of your condition just as you started to inject that positivity. Driving yourself round the bend looking at four walls as you lay flopped out dosed up on medication and forceful fatigue. Being so drained you don’t even have the energy to switch the TV on, never mind have a marathon. Never even hearing a muffle from the ones who are supposed to care because you only get a visit if you’re home bound with a broken leg, right? You can’t even concentrate on a relaxation technique because you are that riddled with pain and mental haziness, so you really think a chronically ill person is going to welcome the chance of rest? No-oh. The polar opposite, in fact. We don’t even know the meaning of the word. I know I’d much rather be embracing the outdoors than cooped up indoors watching the world go by without the opportunity to seize. But go ahead, keep spouting your bullsh*t ideology with absolutely zero knowledge…

“I swear you use your illness as an excuse to avoid things you don’t want to do!”

Of course, you’ve hit the nail on the head! That’s exactly what we do; because we get a cheap thrill out of letting people down,  arriving late, cancelling plans we were looking forward to, being made to feel at fault, having to neglect both yourself and the house you live in because you physically can’t build up the strength to tidy, clean or make an effort. Our health may prevent us from some normality but we still have the sanity intact. Do you really think we’d use our own illness as a justified reason to drop out of occurrences when we try so hard to rid of the link between who we are as people and who we are as a casualty? Think again.

 

“Maybe it’s just all in your head. Have you tried therapy?”

 

I’m sure there’s plenty of spoonies who are in agreement with me that when the dreaded 11 letter affirmation drops up in conversation, that’s when you’re just about at your wits end and ready to turn and walk straight out that door with no forewarning. No, I don’t mean ‘get well soon’, I mean ‘mindfulness’ – apparently the correct healing method and solution to every single ailment that certainly isn’t deriving purely from your mental state. Fair enough, I understand that being very low and stressed out isn’t going to be beneficial for your already daunting illness so the option is open for a chance to develop your happiness and coping strategies but that is not going to be the answer that frees you. I once attended a pain management session that made me worse upon leaving than it did entering because apparently if I’m thinking in detail about the impact of my pain, then that means I’m anticipating it so all I need to do is close my eyes, picture sunny beaches and the sound of waves and that will magically go away. Pffft. Fun fact: it won’t. This is the life we live, we’re not imagining it, it is not stemmed psychologically and you believing so is undermining us to a great extent.

 

“There must be something out there to help you, let me pinpoint what’s best for you amongst all these innovative new treatments despite my lack of medical advantages*”


*Okay so this may not be a direct quote but just a taster of my scoffed annoyance.

Trust us, when we say we’ve tried every route – we’ve tried every route. From the minute you are given your diagnosis to the desperation on discovering restoration that works, you’ll have travailed tirelessly with doctors and consultants; testing, trialling, discussing and considering with every brain cell left. We’re appreciative of hearing about new treatments that are on the horizon but please don’t tell us there’s plenty of options for us to take. If there was, we’d most likely be running around carelessly fulfilling our dreams, not wasting half of our life sat in a medical setting listening to the top 40 on repeat because apparently the staff are willing to listen to Capital FM from morning to evening (you know the woes).

People in general have a hard time understanding chronic illness and it’s easy to fall under the spell of beginning to believe those misconceptions as your self-assurance drops but remember; only you know yourself best, don’t allow ignorance to cause multiple hurt.

 

Have you ever been a victim of misconceptions? Let me know your experiences in the comments – fellow spoonies or not.

 

Bridie x

Share

What Does Chronic Pain Really Feel Like?

Posted on 4 min read

From the outside looking in, it’s unnoticeable, it’s invisible, it’s ordinary, it’s nothing to muse over because it’s not directly and plainly problematic to the population. For me, it’s waking up exhausted, it’s attempting to continue my daily schedule exhausted, it’s going to bed exhausted, it’s being so exhausted you can’t sleep for the malaise. It’s having no control over how you’ll feel. It’s making the decision of taking a break away from desolation to enjoy yourself knowing full well you’ll suffer for a recurring period afterwards. It’s questioning whether it’s worth it. It’s applying makeup and savouring style because putting on a mask means it’s easier to hide, right? It’s a “yes, I’m fine thank you, how are you?” whilst smiling away the devil’s agony gnawing away at the snippets of your skin. It’s having people speak on your behalf as if you’re an illusion that is unable to answer for themselves. It’s being told how you feel and having no fight left in you to tell the responder they’re wrong. It’s the disconcerting reality of having no escape route, no cure, no positive progression. It’s the steps backward outweighing the forward. It’s having no set protocol to make it better. It’s never finding the right words to explain, to erase the prejudice and bring some understanding to people who have no idea. It’s dealing with ignorance. It’s the misinformed perceptions. It’s the emptiness on the inside but the hammering on the exterior. It’s the strain on relationships. It’s the vivid emotion. It’s the sadness. It’s the isolation. It’s the worry. It’s the misery. It’s the anger. It’s the guilt. It’s the paranoia. It’s the envy of normality. It’s the avoidance. It’s forgetting how you used to identify. It’s always needing to prove this is happening. It’s the fear of not being believed. It’s the elevation slowly breaking away a piece of confidence and worth. It’s not feeling sorry for yourself but not feeling proud either. It’s a game of yo-yo. It’s not knowing what it feels like to be pain free. It’s making the most of every moment but still experiencing the wrath anyway. It’s a delayed reaction. It’s exhilarating a breath of fresh air as you have a brief relief only for it to return with intense force. It’s being struck down with a sedative. It’s being enclosed in a glass case of woe. It’s the constant struggle. It’s desperation. It’s the obstacles. It’s the setbacks. It’s the barriers. It’s the stop on regularity. It’s the disruption of balance. It’s motivation levels reaching zero. It’s the strength you never knew you had. It’s being a coping extraordinaire. It’s not giving yourself enough credit. It’s wanting to give up but having no choice but to carry on. It’s tears that get washed away by the desire to fight. It’s setting yourself up for failure. It’s the fiery attack that drains you of every inch of energy. It’s the overload of senses. It’s the reflection staring back at you protesting against hope. It’s the nagging in your ear that won’t go away. It’s never eloping your attention. It’s holding everything in until you’re ready to falter, unfold and explode. It’s the way your body feels like concrete; movements causing pain, environmental factors causing pain, a trigger to the mood causing pain, anything causing pain. It’s counting down until you can reach home, turn off the false happy face, stop pretending and crumble in the only space you feel secure. It’s the take over. It’s the unforgivable. It’s being a human stuck inside a misfortune. It’s having the weight constantly on your shoulder. It’s the battle of medication and doctors appointments. It’s having to rely on somebody else. It’s not being able to continue with what you had in mind because resting is the only option. It’s cancelling plans. It’s taking years to build yourself up only for one single thing to destroy every self made improvement. It’s having someone think they hold the power to inform you of your capabilities when even you’re not sure of what you stand for anymore. It’s the rawness of the limits. It’s constantly being held back. It’s a 23 year old living as a 90 year old. It’s life.

 

I’m sorry to be so morbid on a miserable Monday that requires optimism but lately I’ve been lumbered with the effects of this persistent horror more than ever. It’s not just the pain itself, it’s the baggage that comes with and when I feel as though it’s ready to break me, that’s when I feel it necessary to spill my thoughts on to a page. It’s been a while since I expressed my personal emotions and I’m at that point where I think it’s needed for me to at least gain a sense of solace. Of course I also hope it speaks to the hearts of those who suffer with chronic pain because if anyone knows how much comfort some knowledge can bring and how sharing your ordeal with someone else who requires a voice, it’s me. And on that note, I wish you all a good week ahead. Remember – love and best wishes will always be a reason to look forward to tomorrow.

 

Bridie x


twitter | facebook | instagram

 

Share

20 Things You Shouldn’t Say To A Chronic Pain Sufferer

Posted on 11 min read

When you live with chronic pain, you don’t just live with the persistent anguish; you live with the unknown, the looming judgement, the inevitable choice of enjoying yourself to the extreme and suffering vs staying put with no social life to ease the suffering just a smidgen, the false hope of moving forward when you have a good day only to be shattered with an intense bad day the next, the limitations, the loss of control, the disappointment in yourself, and the idea that you constantly have to prove a point, that this invisible torment shredding you of any normality does exist even though it can’t be seen hidden behind a giggle and a “yeah I’m good, how are you?”. Dealing with an incurable condition that isn’t understood from a distance can be isolating and it’s tough, very tough. I know from my personal experience I find it hard to trust anyone away from my tight knit, inner circle; like if I express myself too much the guessing will begin – the wrong kind, the presuming kind, the kind that sees straight through the exhaustion, the sickness, the misery and distress and focuses on the outer shell.

 

Truth is, nobody really has any idea until it’s happening to them and to see someone’s pain from a second hand view is never on par with actually confronting it on a daily basis. I know most people are just there to offer a reassuring hand but what they don’t realise is it can often come across as patronising and can backfire on an already over sensitive mind. Being a spoonie patient means I am superbly cautious, I’ll admit my moral compass is always aware of every particular conversation and I start believing the entire world is out to criticise, belittle and discriminate against me. There are some things, however, that do touch a nerve when you’re seeking help and comfort from somebody and as grateful as I always am for the support, I guess it’s important to know the rights and the wrongs? It’s a strange issue to deal with from both sides and in no way am I directing this post at anyone but it’s just a general reveal of my own emotions and how I feel.

1. “Get well soon” 
As much as I’d love to be able to pop a pill and lay up on the sofa with a box of tissues and a duvet and be cured within a few hours, it just isn’t gonna happen. The reality is, I’m not going to ‘feel better’. There’s no solution, no simple remedy, it’s called chronic for a reason. I appreciate the kind wishes but it’s the etiquette of illness, it kinda just makes me feel like I’m disparaged. I’d much rather receive a “I’m thinking of you”, or “take it easy”.

2. “It’ll take your mind off it”
I don’t know why people think getting out of the house or focusing on a specific subject is going to ease my pain anymore. It won’t, that’s not how it works. My body doesn’t instantly react positively to a sign of fresh air and a change of environment. What you think you see is me getting on with my day and communicating in an ordinary manner because my pain is a part of me, it doesn’t matter where I am or what I’m doing it’s always there, it attacks everything from my thought process right down to my skin.

3. “Have you tried…”

I’m 100% sure chronic pain sufferers have gone to the end of the earth and back to try and discover a new fix. Along with medical professionals, the hope and the desperation, you’ll have undoubtedly trailed every page of the internet, had a battle with medications, treatments and research. So, regrettably, your casual reference to a cheap remedy you can buy in the supermarket isn’t gonna be helpful.

4. “But you look great”
Thank you, your compliments are much appreciated. I’m able to dress nice, put on some makeup and style my hair even with little energy and the struggle to manoeuvre without sweating out the pain. I can laugh, I can have fun and make light of a situation but that doesn’t mean I’m not hurting. Please don’t make me feel as if I’m exaggerating or ‘faking it’, or insinuating that just because I look alive, I am alive. I’m extremely thankful I don’t look like what I’ve been and continue to go through. Remember, what you see on the surface is nowhere near an accurate vision.

5. “You’re lucky you can just rest all day”
Yes, it’s absolutely brilliant, being cooped up unable to partake in any activity without wanting to break down and curse the world for this intolerable pain whilst the rest of my friends and family live their normal life without boundaries. Trust me, you wouldn’t want to be in that situation, be grateful you’re able to be on your feet all day without any extreme after effects.

6. “You’ve just got to be patient”
Patience and chronic pain are a joint duo, they arrive hand in hand. We’re nothing but patient as we wait for this hell to subside, only to realise it’s not going to happen. Patience is a virtue, and an important one at that but please don’t say this to someone who will be ill for the rest of their lives. I’m not saying diagnosis can’t change, it can, and to hold on to the belief is beneficial but it’s us living with the surrounding circumstances, it’s us trying to live within the confines of our illness, it’s us coming to terms with it.

7. “It could be worse”
Yeah it could be worse. I could be locked alone in a room somewhere with no food or drink, I could be dying or told I have only a week to live but right here in this moment, I’m feeling pretty shit. You can’t compare the problems of others or make someone feel like they shouldn’t be talking about theirs. You may be only trying to give a bit of insightful perspective but you’ll only undercut the emotional and physical impact and that’s the last thing we need.

8. “You were fine last week”

Don’t I know it. I made sure I took advantage of my better days and now I’m paying the price. That’s the thing about chronic pain, the  potency is unpredictable and inconsistent. Some days I may be running around on the top of my game, the next I could be glued to my home comforts with my eyes remained closed because my pain is the worst it’s ever been.

9. “My auntie’s partner’s best friend used to get up at 7am every morning and run a business even when they were in pain”
You may as well just call me a failure there and then because damn if there was another way to make me feel useless and a burden on the rest of them, it’s to put me at the bottom of the ‘this person had control of their pain and you should too’ pile. Shock horror, not everybody deals with pain in the same ways. Just because someone with something wrong with them manages to get on with plans, does not mean another person magically has the same story or the same ability to cope. There’s different strengths and there are little to no similarities in the distinctive conditions of others. A pulled muscle in your back isn’t the same as pain stemming from the brain, for example. It’s just impossible to carry this outlook, especially when you’re a fit, healthy person with no knowledge on what it’s like.

10. “She can’t…”
I KNOW THIS. I know I can’t do what I used to be able to do. I don’t need a daily reminder or an introduction. It’s my number one pet peeve when someone introduces me in a negative way, when that’s the only attribute concentrated on, when I get recognised as someone who can no longer achieve or isn’t capable of anything. “Oh it’s a shame”, god yes, yes it is, but the strength I’ve built is empowering to me. Deep down I know they don’t mean no harm but I can’t help take it personal as only I understand how much effort it took to reach the next step.

11. “I’m sorry”
Finding the balance between pity and empathy is hard but please don’t feel the need to send your condolences at every opportunity, I’d much rather you make me laugh or sit and listen to me with thought. I don’t want you feeling sorry for me, I do enough of that myself.

12. “Oh yeah I’ve felt like that before”
You may think it’s reassuring letting us into the not-so-secret fact that ‘someone I know has something similar’, or ‘I’ve felt pain like that when I stood for too long’ but it’s incomparable and marginalising our experience. There’s a major difference between the average ailment and a long term ordeal of pain. You may think it puts us at ease but it’s just not the same, I know it makes me feel even more pushed out of boundaries.

13. “Don’t be so lazy”
Thanks for informing me that I’m always tired and can’t hold down a task for more than five minutes, I’m so grateful you seem to know more about me than I know myself. It might be hard for you to grasp the concept of a person being in the pain near enough every day with no resting hour but it exists and it’s happening as you try and bring me down a notch. If I haven’t moved for a solid amount of time it’s more than likely because I’ve run out of spoons, am finding it gruelling or have found a place of relief for at least a few seconds and I want to remain this way for as long as possible. Often enough, we have to work twice as hard!

 

14. “I think it’s mind over matter sometimes”
Allow me to let you in to a little secret, it most certainly isn’t ‘all in our heads’ and in my case, when the pain is stimulating from the brain itself then that’s far from truth. Of course thinking happy thoughts can work towards improving your mentality but it’s not going to make the pain vanish. It’s not just a bad thought or a pessimistic mood. We’re not imagining it or playing on the idea. Our pain is not driven from dwelling on the matter, it’s from a real physical aspect and most of the time we’re just striving to find a quality of life we can settle with.

15. “Maybe you should get up and do something”
Or maybe, just maybe, you should stop telling me what I can or can’t do and allow me to find my own pace. My life is a constant marathon race to aim towards a future of getting up and doing something so suggesting I get up on my feet with your demand is not going to aid me, it’s going to prevent me from locating stability. I know my limitations, I don’t particularly like being laid around but sometimes there’s no other option.


16. “You can be awful at times”
I’m a pain in the arse I admit that and when my pain is bad then my mood decreases with a sudden hit. I’m distant, I’m snappy, I can brush past your comments and be mistaken for being ignorant because every single inch of my zest is deflated and all I can think about is this nightmare ripping me apart. You have to be aware of this, I don’t mean to lash out or zone out, I don’t need to be told how horrible I can be, just don’t make me feel any worse, leave me to it and I’ll join in when I feel ready.

17. “You’ve spoilt it now”
Guilt is the biggest part of chronic pain, constantly feeling like I don’t belong or am ruining the party by cancelling plans and dropping out last minute because I just can’t bear to attend anywhere but my bed. If I so happen to back out of something, don’t leave me feeling vulnerable and at fault, if you look at the bigger picture you’ll find it’s the best decision and it’d be much more fun without slow old me anyway.

18. “You’re too young to feel like that”
Our youth should be the epitome of health, right? Where we’re free and glowing and have nothing to worry about. Unfortunately it’s the polar opposite for some, there isn’t an age limit to when you can get ill, nobody is “too young” to be struck down with anything. It’s yet another reason to make me feel like an outsider to the healthy folk, for me to meet society’s standards of achieving everything a young person should achieve with a condition I have no control over.

 

19. “Everybody gets tired”
That’s true, most people don’t get enough sleep and lag heavily whilst pining a good rest but my level of tired doesn’t just appear from staying up too late or chasing up paperwork all day. When you have chronic pain you have to accept the fact you will be tired no matter what you partake in. We have to question and face up to just how much vitality it’s going to take, we have to go through the stages of every action and set up recovery for afterwards. Taking a shower, walking the dog, washing the pots, brushing your hair, even sitting down stationary for hours; every single chore saps my strength and that in itself is tiring.

20. “Can’t you just…”
If I say I can’t, I mean I can’t. ‘There’s no such thing as can’t’ oh but there is when your body is giving up. I can’t forget about it, I can’t just get up and go, I can’t just shrug it off, I can’t relax, I can’t try and take your unwarranted advice on board because all I’m asking for is one thing: to be believed, and to be believed in.

 

I know most people mean well, but the last thing chronic pain sufferers need is advice on how to cope or suggestion of a miracle cure and a positive attitude. It’s not a choice, it’s a lifestyle we’ve had to adapt to and still continue to manage. The only thing I choose to do is minimise the complaining. Most of the above is the sole reason I stay quiet most of the time, even when I feel like I’m about to drop dead, I get up and I keep going. We can’t let people’s perception define how we feel about ourselves. Only we truly understand the strength it took to get out of bed in the morning and for that we should be proud of being able. Even if only for a moment.

Are you a chronic pain sufferer? Do you feel this way at times? I’d love to feel the guidance from my fellow spoonies!


Bridie x

Share