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.
We didn’t have the Internet or social media to research and connect with others living with muscular dystrophy. And, until I reached adulthood, I didn’t know of anyone else with the same condition.
It was difficult enough leaving behind my group of primary school friends and moving on to a different middle school. I felt very lonely and was struggling to integrate, when came the added pressure of immobility.
Prior to this, I could only ever walk short distances – around school and home, but never steps or stairs. Then, at age 10, I suddenly found myself unable to stay on my feet, constantly covered in cuts and bruises from falling, and I didn’t know why.
I was referred to a counsellor, but met with them no more than 3 times, as I found it utterly pointless. How was talking with a complete stranger holding a clipboard going to help me? I couldn’t walk anymore and that was that. Get on with it, Carrie.
Yes, I was stubborn and sceptical even as a child!
People often ask me if I miss it – walking. In all honesty, I tend to fob them off with a half-hearted response; “nah, not really. Moving on…”
But the truth is, my life could and would be so very different if I could walk.
I recently asked my fellow wheelies, on Instagram, what they would do if they were able to walk…
Some of these answers really made me laugh, while others are more thought-provoking.
What would I do? Run! You wouldn’t see me for dust, mate!
Living with a physical disability, as I do, often means dealing with carers. Believe me, this is not a lifestyle choice! It is a necessity.
I’m a very private person who enjoys their own company, hates relying on others, and I cannot do small talk to save my life!
The last thing I want is to do each morning is slap on a happy face and engage in polite conversation with carers, as I’m still half asleep and reluctant to leave my comfy bed.
Some days, it takes everything I have to not call out, “would you kindly buggar off and let me be!”.
Not that I’m ungrateful for the support they provide (no, really). Without them, I would quite literally be stuck – unable to get in or out of bed. They enable me to live my life.
Of course, this isn’t without issue.
I employ my own part-time carers, funded by Direct Payments. Consequently, I am responsible for hiring, firing, training, insuring, managing and paying my employees. This can, at times, be somewhat testing.
I never wanted to be an employer, in any capacity. But as previously stated, this isn’t a lifestyle choice. I NEED carers. Agencies are, well, far from ideal. And so, this is my only option.
As with most things in life, carers come and go. Some leave after a few months, while others stick around for years. Either way, the process of finding new employees, who are both capable and reliable, is always stressful.
Imagine, if you will, routinely inviting strangers into your home, to observe you in your most vulnerable state – first thing in the morning; naked, dribbly, grouchy, with whiffy armpits, stubbly legs and a head of hair like Tina Turner’s!
Sadly, I don’t look quite as graceful as Cinderella on waking!
You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.
Embraced fluffy socks to hide my corpse feet (even when leaving the house!)
Accidently drove my wheelchair into the bathroom sink, bashing my knee – ouch!
Redecorated my bedroom and deliberated for too long over duvet covers
Failed at knitting so took up crochet
Started learning French through Duolingo. In my opinion, so much easier than lessons at school! Although, to be fair, I did spend most of my time staring out of the window
Learned to play pool…online…sorta…
Went to my first ever supercar fest – Shelsley Walsh Hill Climb. I’ll be honest, I haven’t a clue about cars but it was a fun day and something different
A particular highlight was our accessible canal boat ride through the prehistoric Dudley tunnels, mined during the Industrial Revolution. We got soaked (from the rain; we didn’t fall in the canal), and I ended up looking like Alice Cooper with mascara running down my face. But it was memorable!
Despite restrictions, I’ve managed to get out and about a fair bit – Roaming around aimlessly in the car, wandering along accessible forest trails, casually entering a local arboretum without paying, and even attempting the Malvern Hills!
Taking on the great outdoors is definitely challenging in a powered wheelchair, and it’s been met with limited success. But, for me, it’s not what you do but who you do it with.
Grabbing a Tesco meal deal with someone you love ♥ is (to me) far more precious than partying with a room full of semi-drunk acquaintances.
This wasn’t a conscious decision at all. I simply don’t believe in churning out meaningless content purely for the sake of it, so felt it best to wait.
A lot has happened over the past 12 months, both good and bad…
Of course, we’ve endured lockdown and are continuing to feel the effects of Covid, with many disabled and chronically ill people still shielding.
To protect myself and others, I received the Astra Zeneca vaccine back in March – Woop!
While this offers a lot of relief and reassurance, it is important to remain considerate of the many thousands, like me, who are high risk.
Covid isn’t going away, but neither are we! Disabled people are very much a part of society and we should not be ignored or disregarded.
To further protect myself through the harsh winter months, I’ll be getting the Flu jab at the end of September – A thoroughly beneficial prick! I urge you all to do the same, if possible.
On a personal note, we sadly lost my Nan back in January. A tough old bird ‘til the end, she made it to 94, despite smoking forty-a-day, from the age of 12-70!
I will miss her endlessly engaging, witty stories.
We recently gathered as a family to scatter her ashes alongside Stourbridge canal. Despite the occasion, it was actually a really lovely day.
My 4 year-old nephew was an absolute star, “helping to push” me, in my powered wheelchair, the entire way along the bumpy canal path. That kid keeps me going – literally!
Accompanying us was the newest addition to the family, my gorgeous niece, baby Sophie, born in June. A funky-haired little ray of sunshine.
Next month, I’ll be glamming up to attend the wedding of one of my best friends. Having known each other for over 20 years, I’m excited and proud to see her walk down the aisle.
I will attempt to take photos on the big day, but make no promises. I may be distracted by cocktails! Pray there be cocktails…
Beyond that, my plan is to fully embrace the approaching crisp autumn days and cosy nights with hot chocolates, candles and cuddly blankets. Yes, I’m old. Do I care? Naaaaaah!
Oh, this year, I also discovered I really dislike figs! They have the strangest texture. Much like chewing on the sand smothered sandwiches my mum used to make for us to eat on the beach as kids. Mmm, gritty!
For me, being stuck at home for prolonged periods of time, due to chronic illness, is the norm. Hospital admissions, operations, cancelling plans and missing out on events and opportunities is a way of life.
Over the years, many birthdays, holidays and celebratory occasions have been lost to my condition. Whole months have been wiped out to repeated bouts of pneumonia, pleurisy and pneumothorax.
~ This is the case for thousands of disabled and chronically ill people throughout the UK! ~
I know what it is to struggle, to feel trapped, isolated and helpless. Such an existence really puts life into perspective and opens your eyes to what is truly important.
Attitudes to Lockdown Restrictions
Since lockdown began, I’ve seen and heard many petty complaints from ignorant individuals, which I find incredibly frustrating.
People whining about being unable to go out partying or bar hopping to get pissed.
To those self-absorbed cretins ~ GET OVER YOURSELVES!
Despite warnings, many continue to flout the rules, refuse to wear face masks and generally take life for granted, with little regard for the wellbeing of others. Some naively appear to think they’re invincible.
Trust me, it’s a hell of a lot easier to breathe through a protective face covering than a ventilator!
So please, have a little care and consideration. Protect yourself and others.
During lockdown, I can honestly say I did not miss going to pubs, restaurants, cinemas, shops or salons. To me, these are life’s luxuries.
Yes, we all need that escapism and we all enjoy going out and socialising, myself included.
But, when the time comes to look back on my life, I’m pretty certain I won’t be thinking, “damn, I wish I’d done more pubbing and clubbing”.
The one thing I REALLY missed during lockdown was quality time and physical contact with my family and closest friends. Being able to sit with them, touch them, hug them and talk face-to-face.
~ It really isn’t what you do, it’s who you do it with. ~
This week, the UK government issued new measures to suppress the spread of Covid-19. From Monday 14th September, social gatherings will be limited to 6 people.
In all honesty, I can’t say I’m surprised at these restrictions. From my perspective, as a physically disabled shielder, it seemed inevitable.
Our government has actively encouraged people to return to work, to school, the High Street, the salon, the gym, to pubs and restaurants.
Of course, we all want a return to some sort of normality. And while it is essential we sustain our economy through supporting businesses and minimising unemployment, it would appear BoJo favours wealth over health.
Those at greater risk have been largely neglected; the elderly, disabled and those with underlying health issues.
Many, like myself, have been shielding since March. We have been isolated in our homes, watching the world go by from behind closed windows.
Some have endured months without medical support. Personal carers, though essential, pose a risk to the most vulnerable. And others are forced to leave work, since there is little to no support for disabled employees.
I am very fortunate to have been able to continue accessing my routine hospital appointments throughout lockdown.
Despite initial anxiety and fears from friends, I felt safe and protected during every one of my 6 hospital visits and 2 GP appointments since March – all thanks to our invaluable NHS.
However, after waiting almost a year for a much-needed respiratory referral, I fear my upcoming appointment may now be cancelled, due to the latest guidelines.
My discussions with various medical professionals over the past few months reveal concerns for a second lockdown around October.
With Flu season approaching, this warning poses an even greater strain and impact on the elderly, disabled and NHS.