I Caught Covid

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.

A selfie, taken on 24th October – the day I caught Covid-19

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.

Flowers from friends

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.

“Thinking of you” flowers

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.

My constant companion

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.

Something has to change!

Muscular Dystrophy | Life with Carers

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!

A black and white image of Tina Turner, with big hair
Tina Turner

Sadly, I don’t look quite as graceful as Cinderella on waking!

Disney's Cinderella waking up

You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.

Sounds fun, huh!?

It’s not. At all. And I loathe it. But this is an essential part of my life with a physical disability.

It is, therefore, all the more reassuring when someone comes along who instantly puts you at ease, makes you laugh, talks (but doesn’t babble), and actually wants to work. This isn’t easy to find!

It’s early days with my latest newbie, but after a somewhat turbulent couple of months (care-wise), it is a huge relief.

Always nice to close on a positive note, eh folks.

Carers Rights Day

Life with PAs

I have Ullrich congenital muscular dystrophy, and consequently require support from carers.

For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.

I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.

I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!

I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.

Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.

For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.

Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).


Carer’s Allowance

If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.

You don’t need to be related to, or live with, the person you care for.

My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.

This may seem like a decent sum of money, but consider ~

£64.60 = 35+ hours care work. That equates to £1.80 per hour

This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.


My Open Letter to Carers/PAs

On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.

Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.

As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.

Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.

We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.

Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.

As you would with any potential employer, be professional and courteous.

If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.

Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.

Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)

Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.

So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!

#CarersRightsDay2018