The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.
I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).
My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.
Why do they suddenly decide to fail, without warning??
This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.
Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!
Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.
Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!
I will persevere and hope for the best, while maintaining realistic expectations.
On a happier note, May provided some space for myself, as my folks took a little staycation.
People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.
As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!
Years ago, during a university art class, a fellow student sat idly, pissing and moaning about how awful and unfair his life was. (He wasn’t literally pissing, by the way. That would be odd!).
There, in my powered wheelchair, with teeth clenched, I chose to remain quiet while he complained about his superficial, so-called ‘problems’.
As I recall, he’d depleted the bank of mum and dad on nights out and booze, meaning he couldn’t afford to go clubbing again that week.
Oh dear, what an awful shame!
A lad opposite, who I didn’t know well, kept looking at me with a shared expression of annoyance – I remember it vividly. He finally interrupted, “you know what mate, we’ve all got problems! Maybe look around sometime”.
I couldn’t help but smile and offer a nod of respect.
I was 20 at the time. Now 33, my tolerance for ignorance and entitlement has dissipated with age.
Truth is, everyone, at some point in life, will encounter problems, challenges and setbacks. Indeed, we all feel stressed and depressed from time to time – these feelings are completely valid.
Of course, feeling depressed is NOT the same as suffering from depression itself. (That’s a whole other topic, which I won’t go into here).
I’m sure we’ve all been told, “others have it worse off”. While I find this phrase unhelpful and somewhat dismissive, I must concede, it is often true (sorry, not sorry!).
Not to undermine anyone’s struggles or experiences, I do think it’s fair to say that the problems of some people are far greater than those of others – to gain a little perspective, all you need to do is switch on the news!
Admittedly, over the years, I’ve allowed myself to indulge in moments of self-pity (not an attractive trait). The dark pit of despair is easy to fall into, and difficult to climb out of.
That said, I’ve never sulked or felt sorry for myself over what I consider petty complaints, such as missing out on a social gathering or event. Honestly, I’ve no time or patience for that sort of nonsense. Again, it’s about perspective.
On my darkest days, I would ask – Why me? What have I done to deserve this crap?
Funnily enough, no higher power ever answered. Which later lead me to ask – Why not me? What makes me so special?
Shit happens! And yes, some of us face more than our fair share of it. But like it or not, we must learn to accept, adapt and deal with it – limitation, loss, grief, disability, pain, trauma, illness…
What’s the alternative? Hide under the duvet covers and wallow? Trust me, that sort of self-destructive behaviour can only create further problems.
If I’ve learnt anything, it’s that life isn’t fair.
I continue to battle with frustration due to my health, physical limitations and circumstances over which I have no control. So, I now try my best to practice gratitude and remind myself of all the good things I am blessed with. I don’t always succeed, but I try.
I also find it hugely beneficial to avoid self-indulgent doombrains like the aforementioned art student!
Still, I got back on the horse – (well, I was lifted) – knowing I had no other option, since I couldn’t raise myself from that muddy puddle and walk away.
In 1998, aged 10, I became completely non-ambulant and dependent on my manual wheelchair.
Though it was some relief to no longer struggle desperately to stay on my feet, I then found myself thrown from my wheelchair on numerous occasions – whether due to misjudged terrain, being pushed too fast around the school grounds, the absence of belt straps and anti-tippers (I know, I know), or simple recklessness.
Oh well, you live and learn!
Now, I’m teeny tiny in stature and so, I’ve always been manually lifted and quite literally chucked around. This, inevitably, lead to further falls – or rather, being dropped on the floor and bashed against furniture.
Most of the time, I managed to laugh it off – shit happens! Other times, it was pretty damn painful.
Some years ago, a routine chest X-ray revealed a fractured lower rib.
The radiographer approached me to ask if I knew about the fracture. I told him I did, (how could I forget?). He then asked if I attended A&E following the accident – “No, what’s the point? Nothing can be done for a fractured rib”.
Though visibly surprised, he shrugged and agreed.
There are many more incidents I could recall, such as ramming my powered wheelchair – and my knees – into the bathroom sink, (unintentionally, of course!).
My point is, in life, we fall, we get hurt, we break. We can either wallow in self pity, or take the knocks on the chin, (sometimes literally), and choose to get over it.
Saying that, I could do without anymore ouch moments!
“Falling down is how we grow. Staying down is how we die.” ~ Brian Vaszily
Let’s be honest, when we’re young, we’re all enticed by a pretty face or a good body. Attraction is primarily physical, and to put it bluntly, at 18, most of us would shag anything with a pulse – opportunity is everything.
I cringe when looking back at some of the guys I fancied and gave my attention to! What the bloody hell was I thinking?!
Much later, I reluctantly signed up to dating app Hinge, which lasted a total of two months.
I tried modern dating (eurgh!), which, in my limited experience, seemed to consist of shallow idiots and the phrases “you’re no one’s type”, “get in the car!” and, “let’s book a hotel room”.
Responding with a firm no, I was told to “fuck off then”.
There are some lovely people out there!
On reflection, it probably wasn’t the best idea to tell one bloke that his car was shit, but it made me laugh as I rolled home alone in my powered wheelchair.
Growing up, a friend of mine repeatedly told me, “you need a big strong guy to pick you up and throw you around”.
I can see where she was coming from, but even as a young teen, I always thought, why? Don’t I just want someone to care?
Eventually, I did date that guy – the gym guy. And yes, for the first few months it was great. It was fun, liberating, and as another friend once said, “he gave you a sense of independence and adventure”. She was totally right.
In terms of practicality, it made life a hell of a lot easier for me, as a non-ambulatory wheelchair-user. For a fleeting moment, I thought that was what I wanted.
But, ultimately, I couldn’t rely on him and I felt very much like an option, a burden, and too much to take on due to my disability. He was physically incredibly strong, but mentally and emotionally very weak.
I didn’t realise it at the time, but at that stage, I was willing to accept the bare minimum – stupid girl!
I invested my time and energy in the wrong place, the wrong person.
The experience changed my outlook and, as cliché as it sounds, made me realise my worth.
You live, you learn, you move on.
As we get older, our perspective, values and priorities change.
These days, I can’t think of anything worse than attempting to flirt (awkwardly) with some Tinder clone. Quite frankly, I’d rather cuddle up at home, alone, with a nice cuppa tea!
At 33, my life certainly isn’t as I imagined or hoped for as a kid. Then again, with age comes the realisation that life rarely turns out as planned.
I’m no longer impressed by aesthetics. Trust me, a pretty face will only get you so far in life.
Above all, what I want is someone to care, unconditionally. Simple as that.
Don’t we all??
Don’t get me wrong, I cherish my alone time and independence, and I’m more than capable of caring for and supporting myself (mentally, anyway).
I’ve endured a fair amount of crap and spent over 90% of my life single. I’m certainly not the type to need a man.
I’m not interested in grand gestures, a lavish lifestyle, fancy house, or gym-bods!
But, for someone to choose you, want you, and stand by you, even when the shit hits the fan – especially when the shit hits the fan! That, to me, means the world.
The show was magical and this theatre is, by far, the best and most accessible I’ve visited.
It’s been a while since I roamed around Birmingham at 11pm – Such a rebel!
Things I’ve been enjoying
It’s a Sin – Set in London during the 80s AIDs epidemic, this 5-part miniseries has a great cast, a brilliant soundtrack (in my opinion), and the final episode is heartbreaking.
This is Going to Hurt – Having read the book by dry-witted former doctor Adam Kay, I was keen to check out this TV adaptation, and I wasn’t disappointed. It is funny, brutal, tragic and eye-opening. I highly recommend this one!
Lord of the Rings – Now 20 years old, I decided to indulge in a solo movie marathon and revisit this epic trilogy.
Samwise has always been my favourite character. And why? His loyalty is unwavering and unconditional. We all need a Samwise in our lives!
Plus, the actor, Sean Astin, starred in The Goonies (1985), and remember, “Goonies never say die”!
~ BIG 80s fan here!!
Duolingo – At the grand old age of 33, I’m attempting to learn French, (super cool), after dropping the subject in year 9, in favour of German. And this time, I’m sticking with it.
Spring is now well on the way, and with that comes warmer, sunnier, happier days ahead.
Though I’m no longer able to drive, which is incredibly limiting and frustrating, I will endeavour to get out and about as much as physically possible.
June – I’m off to Cornwall to spend some time with a good friend, and, of course, to see the sea – a rarity for this landlocked Midlander.
August – I’m excited to return to the Birmingham Hippodrome to see Les Misérables (for the second time).
I love the theatre, having seen many shows over the years. It’s one of my favourite things to do.
As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.
But, of course, kids (and adults) can be blunt and sometimes cruel with their words and observations. And, as time went on, I was subjected more and more to stares, pointing, judgement and exclusion.
I became a full-time wheelchair-user at the age of 10. Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’. Looking back, I guess it affected me more than I realised.
My teens were hard – I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.
Then came the dating years…
Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.
Somewhere along the way, I lost myself and my sense of identity.
Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!
I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.
But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.
If others don’t like it, that’s absolutely fine, but they can kindly fuck off!
In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…
…Excuse the Listerine!
The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.
Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?
“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.
For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.
I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!
In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!
This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.
My Life Lessons
Stop caring what others think of me
(because, actually, they’re probably not thinking anything)
I can trace this back to a comment made by a fellow pupil at primary school who told me, “you look normal when you sit down but really weird when you walk”.
I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.
Take me as I am or not at all.
Be my true, authentic self
I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.
His answer made an impression on me:
“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”
Man, he was…DEEP!
Don’t waste my time, effort or tears on those who don’t care
I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.
I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.
Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.
For the past three weeks, I’ve been battling Covid, having tested positive on 27th October. I was, in fact, due to receive my booster jab the following day. Bloody typical! Despite being double vaccinated, the virus hit me hard, really hard.
Physically disabled from birth, I’m one of the many considered ‘clinically extremely vulnerable’.
My condition, Ullrich congenital muscular dystrophy, is rare, progressive and affects lung function. This is made worse by a spine that’s as crooked as a question mark and a squashed torso.
I’ve always been a “sickly kid”, susceptible to respiratory viruses, which become more and more difficult to overcome, the older I get.
Throughout my 32 years, a considerable amount of time has been spent in hospital. I’ve endured several bouts of pneumonia, pleurisy and a collapsed lung. Furthermore, my immune system is very much suppressed and affected by at least 15 surgeries under general anaesthetic – I stopped counting after a while.
It’s fair to say, my fragile, little body has taken a battering. And I am tired.
These days, it takes at least a month before I even begin to improve. Life quite literally comes to a stop. Once symptomatic, I become dependent on my BiPap ventilator 24/7. I go from bed, to chair, to bathroom. And that is how I exist. Time becomes meaningless and the days merge into one.
~ I’m not including photos of myself whilst ill because, well, I don’t want to. I don’t have the energy or interest for selfies, and, I don’t want pity. I don’t allow anyone other than my parents to see me in this state, it’s simply personal choice. ~
Few people really empathise and grasp the seriousness of the situation, which I totally appreciate. It’s difficult to comprehend something you haven’t seen or experienced for yourself. Admittedly, 20 year-old me wouldn’t understand either.
Life back then was very different. I was a night owl, regularly staying up until 4am and feeling fine the next day. I completed a coursework focused university degree, spending some days on campus from 9am – 9pm, followed by a 40 minute drive home. Though never a party girl, I did my fair share of drinking and socialising. Trips away with friends involving going out all day and every night, then clambering back to the hotel in the early hours just didn’t affect me. I had the energy and ability to do the things I wanted to do, and it was fun.
These days, it takes everything I have to get out of bed (assisted by carers) and shower.
It’s not the life I wanted or hoped for. But it’s all I have to work with. And yes, it does affect my mood, attitude, point of view and relationships.
A LOT of my time is spent resting. Of course, I would much rather be out, exploring, experiencing, making memories, living it up, and doing fun, daring, exciting activities. But I simply can’t.
Though I try to hide the severity of my condition, a select few people, whom I trust and am closest to, know how much I struggle.
I only told four people about my Covid diagnosis. Mainly because, well, it isn’t the happiest subject, is it! And right now, all of my resources are focused on recovery.
Inevitably, word gets around, and neighbours as well as family friends are also now aware. And they’ve been absolutely incredible.
To the people who expressed genuine concern, care and support – thank you so very much! You know who you are, and I value each and every one of you.
The generous gifts, cards and daily messages have been a huge comfort. I’ve even received medical supplies, vitamins and immune boosting supplements from friends! Real friends who step-up when life is pretty shitty.
Knowing that people care is worth more than anything in life.
To close this rather rambly and inarticulate post, I want to pay the biggest tribute to my parents, particularly my mum, who has patiently cared for me throughout, and not left my side. It’s not only my life that’s been put on hold by Covid, but theirs too.
For those who don’t know, I still live with my parents, in their home. It’s far from ideal and we do butt heads from time to time. But the love and loyalty is unconditional.
My mum is 67, suffers from arthritis, and, four years ago, underwent knee replacement surgery. She’s lead an incredibly challenging life, which I won’t go into. She is an UNPAID carer. She does not receive a single penny to care for me, and yet, she does it without question or complaint.
To whoever is reading this, please acknowledge the country’s thousands of unseen, undervalued, unpaid carers. Let’s raise awareness of the situation and show them some care, support and gratitude!
Those who work regular 9-5 jobs get to come home at the end of the day and relax. For family carers, the work never ends. It is relentless, grueling, and it impacts their lives as well as their mental and physical health.
I withdraw, avoid social interaction, lose interest, lack motivation, procrastinate, overthink, overreact, become defensive, eat less, lose weight, neglect myself, don’t care what I wear or how I look, mood swings, sleep more, insomnia, chronic fatigue.
*DISCLAIMER: The information here is based solely on my personal experiences and circumstances. I am NOT in any way seeking to provide medical advice or instruction.
What I Do Find Helpful:
Saying no: As hard as this can be, it is sometimes essential for both my physical and mental health. It’s also important for me to acknowledge that I am not responsible for how others react. If I’m unable to attend an event or social gathering and others take this personally, that’s ultimately their issue, not mine.
Being selective about who I spend my time with: Age and life experience has made me review and evaluate the people in my life – who adds value and who doesn’t. Who are the “no matter what” friends? It may sound harsh, but I’ve learned it’s not only okay, but necessary to distance myself from certain people. It’s easy to find friends when you’re young, fit, healthy and carefree. But when times are REALLY tough, that is when you realise who and what matters most.
Listening to music (through earphones): A form of escapism, allowing me to block out the rest of the world and any unwanted distractions.
Getting out of the house: It can be anywhere, doing anything or nothing. Sometimes I just sit by the river and stare. Other times I like to venture out in the car, though for me, this means relying on someone to drive me around.
Express: Sometimes I lock myself away and cry, other times I sit all day in total silence. I would say, do what you need to; scream, shout, talk it through. Whatever works for you.
Do what you love: However small or insignificant it may seem, I try to do something, every day, just for me. It could be as simple as listening to my favourite song on repeat, writing, sketching, reading, watching TV or YouTube.
Self care: When I’m feeling low and I can’t be arsed with skin care, presentable attire or brushing my hair, I just spray myself, liberally, with my most expensive perfume. Granted, I’ll still feel like crap, but at least I smell great. It’s a small comfort requiring no effort.
What I Don’t Find Helpful:
Unsolicited advice: Superficial comments such as, “stay positive”, “get better soon”, “it could be worse”, and, “take some multivitamins” – This is neither helpful nor constructive.
Talking when not ready: We are often encouraged to talk and share our troubles. And, while I totally agree that it is ‘good to talk’, and we shouldn’t feel like we have to keep our thoughts, feelings and concerns to ourselves, I also think it should be on our terms. We are all different. Some people find great comfort in talking, while others don’t. I, personally, am the latter.
Sunday 10th October 2021 ~ World Mental Health Day
It’s now officially autumn in the UK, and so the days are becoming shorter, cooler and darker.
For many of us, the cold weather and lack of sunlight negatively affects our mood (Seasonal Affective Disorder).
This impacts some people much more than others, and of course, it is only one factor that contributes to the state of our mental health.
I believe we all experience some level and form of depression throughout our lives, and for very different reasons.
We’re advised to explore the outdoors, take walks in nature, and get regular physical exercise to improve cognitive function and release endorphins . But for those of us with physical disabilities, this isn’t always possible.
Though essential, my physiotherapy sessions came to an abrupt stop, many years ago, at the age of 14. Accessing services as a physically disabled adult is beyond challenging!
Furthermore, some with disabilities, impaired immunity and chronic illnesses are continuing to shield, and therefore cannot safely access the outdoors.
Some are completely isolated, don’t have a garden and cannot drive. Others are suffocated by the constant presence of carers and those they live with, unable to escape the confines of home.
It’s surprising how lonely you can feel in a crowded room.
So, what do WE do? How can WE support and improve our mental health?
There is no straightforward answer, (sorry about that!), as we’re all different, and facing our own battles.
I, personally, get very frustrated with life, my limitations, the lack of assistance, understanding and empathy. It does often feel like physically disabled people are disregarded from society and forgotten about.
But we feel, we need, we want, we deserve, we matter.