Coronavirus | Thoughts from a Disabled Pixie

Needless to say, we are in the midst of uncertain and unprecedented times.

Photo of a card reading, 'keep hanging on in there' (left) and a medical face mask (right).
Photo of a card reading, ‘keep hanging on in there’ (left) and a medical face mask (right).

Everywhere we look, we are bombarded with the latest news regarding Covid-19; on the TV, radio, newspapers and the Internet.

While most is factual information from reliable sources, there is also plenty of unhelpful rumour and speculation, particularly on social media.

Personally, I don’t find it beneficial to watch the News three times a day, unlike my folks!

We all know by now what we should and shouldn’t be doing to limit the spread and keep ourselves and each other safe.

Guidelines on social distancing during the Coronavirus pandemic.
Guidelines on social distancing during the Coronavirus pandemic.

Why add to the stress and anxiety? I’d rather focus on other things; happier things!

Of course, the situation affects everyone in some way; domestically, financially, their work, education, physical and mental health.

This is an incredibly frightening time for many, myself included. I am considered high-risk, since I have a progressive muscle-wasting condition that affects my breathing.

A Friendly Reminder from a Delicate Little Pixie

Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.

I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.

Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.

Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.

So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.

Final Thoughts

Show your thanks and appreciation for the NHS and those working in health and social care.

Illustration of NHS healthcare workers being saluted by Superman.
Illustration of NHS healthcare workers being saluted by Superman.

Be mindful of the most vulnerable in society, and help out if you’re able to.

Print-out for those wanting to help anyone self-isolating due to Covid-19.
Print-out for those wanting to help anyone self-isolating due to Covid-19.

Please don’t panic buy or stock pile. This isn’t the apocalypse, people!

Where possible, please support local businesses.

Be sensible, be safe, be rational.

This too shall pass…

New Year, More Me!

We’re now in the midst of January, and many are following a “new year, new me” health and fitness regime.

Most of us over-indulge at Christmas. Too much rich food and too much booze.

Everywhere you look, it seems people are trying to lose weight and tone-up. Fair play to them! Do what makes you feel good.

But just to break the trend, here I am trying to put on weight!

Okay, so…I’m teeny tiny. Pixie sized! My weight has always been fairly consistent and never really fluctuated.

Of course, my condition influences this. Muscle weighs vastly more than fat, right? Well, I have very little muscle mass. And so my BMI is always going to be much lower than the average.

I won’t lie, I’ve always consciously monitored my weight and my calorie intake. Not due to vanity, but practicality.

I am non-ambulant and therefore cannot transfer independently. I get thrown around a lot! From chair to chair, chair to bed etc. If I were significantly heavier, life would be much more difficult!

People who struggle to lose weight often ask me how I stay so tiny, considering I’m unable to exercise. Well…

~ Growing up with older brothers helps! I’ve always scraped food off my plate onto theirs. And they were always happy to finish off any food I left.

~ Study food labels and count calories.

~ Self limitation. I’ve almost trained myself to say no when someone offers me chocolate or a biscuit. Bad, I know.

~ It might sound silly but, over time your stomach does shrink and your body adapts. You learn to function on fewer calories.

*Now, to make it absolutely clear, I am in no way dictating, advising or advocating such bad habits! I am very much aware that this is unhealthy behaviour.*

So, why do I now want to put on weight?

When I’m ill, I eat less. When I’m really stressed, I stop eating. In these instances, I am NOT consciously monitoring my weight.

Over the past 2 months, I have unintentionally lost weight. This will no doubt affect my overall health and wellbeing, reducing energy levels and leaving me vulnerable to infection and illness.

Believe it or not, increasing calorie intake is far more challenging (for me) than you might imagine. It’s difficult to break the habit of a lifetime!

Before, I would go literally all day without eating a thing. No breakfast, no lunch. I would then pick at my dinner and that would be it.

I am now constantly reminding and forcing myself to consume food and drink, little and often, throughout the day.

If I can put on half a stone, I’ll be happy. I’ll still be skinny, but I’ll be healthier. That can only be a good thing!

Guest Post | Wealden Rehab ~ Occupational Therapy

Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team

Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).

Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.

Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
outcomes.

Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.

Installation of multiple celing hoist units at Foreland Fields School

Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.

Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.

Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
experience.

In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’

Ceiling hoist installation by Wealden Rehab at the Chiltern School

Many thanks to Wealden Rehab for providing this guest post.

Physical Health & Mental Health

Physical disabilities/impairments and mental health issues are not mutually exclusive!

Many people, like me, living with disabilities and chronic illnesses are affected by stress, anxiety or depression at some point in their lives.

This is not to say that the disability/impairment, whether temporary or permanent, is the primary cause of the mental health issue. It could be a contributing factor, or they may be completely unrelated. You might just be super lucky and have been blessed with both – Double whammy!

Equally, those struggling with their mental health will often (if not always) experience physical side effects, such as headaches, fatigue, insomnia, restlessness, nausea and chest pains.

Essentially, what I’m saying is, the mind affects the body and so the body affects the mind.


My Disability & Point of View

I was born with a rare form of muscular dystrophy – a physical disability – that has progressed over time. I am now a non-ambulatory wheelchair-user, having lost the ability to walk at age 10.

My condition has a considerable effect on my body and physical capabilities. With the best will in the world, there are many things I cannot do.

For example, my older brother is very fit and able-bodied. He has travelled the world and often goes trekking through the countryside and climbing mountains.

Last year, he and some mates completed the Three Peaks Challenge in aid of Muscular Dystrophy UK. Gruelling and possibly a little bit crazy, considering the 3 lads did all the driving themselves – but wow!

I often wish I could be out there with him. It might not be everyone’s cuppa, but it would be nice, just once, to experience that sort of thrill and adrenaline rush. A real physical accomplishment whilst being in the midst of nature.

But, I can’t. And I never will. Of course, this gets me down and impacts on my mood. Yes, I wish I could walk, run, dance, be completely independent and spontaneous. But I can’t. I am limited and reliant on support from others to live my life. This is something I have no choice but to accept.

There is no treatment, no cure, and no pill I can pop to help the situation. For lack of a better phrase, it is very much a case of, deal with it!

I cannot control my disability or how it affects my body. Therefore, it is important to focus on the things I CAN do and control.

I can’t dance, so I like to watch the dancing (yes, I’m a sad, old Strictly fan. Don’t care!)

I can’t drive, so I have a passenger WAV (wheelchair accessible vehicle), which allows me to get out and about.

My Motability passenger WAV (Wheelchair Accessible Vehicle)

I can’t walk or run, so I roll (with style)!

Admittedly, I’m pretty crap at sorting my own problems out. So I tend to focus on other people’s 😂 Not necessarily a good thing, but there ya go!


Living with a physical disability is a way of life. It is inflicted on us – we have not chosen this path. Similarly, living with a mental health illness is a way of life. So what you gonna do? ADAPT or Die!

Conversations about Anxiety

This morning, I had a conversation with a friend about anxiety. (It’s good to talk, folks!)

We all experience anxiety to some degree. I know I do. I worry about certain situations and often place far too much emphasis on what others think of me. But I’m gradually accepting that these things are out of my control. So why worry?

My friend, (let’s call her Brenda!), was absolutely fine when she got to mine, though her anxiety had flared up earlier causing her to overreact and behave irrationally. As she put it, she “catastrophized”. The fact she’s aware of this is, in itself, a positive sign.

Brenda has various mental health issues resulting from personal trauma. She takes antidepressants, antipsychotics and is undergoing counselling.

For a LONG time she buried her issues and tried to carry on as usual. This culminated in Brenda becoming very ill and unable to cope with everyday life. It was only at this point that she sought medical support and realised that what she was experiencing isn’t “normal”.

I asked Brenda what happened this morning to cause her to overreact. Her parents have bought a wooden toy kitchen for her son, which wasn’t in the plan. It’s a Christmas present Brenda specifically told her mum not to buy. Not a big deal, you might think. So I asked, “why did it bother you so much?”

Control. The situation was taken out of her control and this triggered Brenda’s anxiety.

She worried her son wouldn’t like it.

She worried he would like it too much.

She worried he might be teased/judged for receiving a stereotypically girly toy.

She worried about the cost.

She worried that he would prefer the toy kitchen to the gifts she has bought for him.

She was overthinking the whole situation. But she knows this. So once her anxiety subsided a little, she removed herself from the situation, went home, shut herself away and had a nap. Anxiety is mentally and physically exhausting!

It’s only through therapy and counselling that Brenda is learning to recognise her triggers, symptoms and manage her anxiety. She can better organise her thoughts, respond to her feelings and differentiate between what is real and unreal.

She summed up her anxiety in one simple phrase ~ fear of the unknown. I’d never thought of it this way. But it makes a lot of sense!

One of Those Days…

Nosey Bints, Parking Tickets and Frustrating Phone Calls

They say bad luck comes in threes…or is it multiples of three? 

I’m generally fairly tolerant with day-to-day annoyances and ignorant people.

As a wheelchair-user, I’m used to complete strangers who feel entitled to stare or approach me for interrogation. They tend to be so ridiculous I choose to simply laugh it off.

Don’t sweat the small stuff, right.

But there are also times when my patience is wearing thin. Some days, I’m just not in the mood!

Today is one of those days.


I attended a routine hospital appointment and parked my Motability WAV in a disabled bay, with my blue badge clearly displayed, as usual.

As I reversed out of the WAV, I heard a woman stood directly behind me shouting, “I’m just having a nosey inside!”

*Cue eye-roll* Oh, feck off, lady!

I then waited in a small room crammed full of virally infested patients for well over an hour, only to be told the nurse I was due to see went home sick hours before. Which begs the question – why not inform me of this on arrival?!

I waited a further half an hour to be seen by another nurse. At least it wasn’t a wasted journey, I guess.

Having returned to my car, I was ever-so-slightly pissed off to find a parking ticket!

As soon as I got home, I logged-on to check out the meaning of this fuckery. As I suspected – no reason for issue, no explanation and no photo evidence.

Needless to say, I wrote a strongly worded appeal. Under no circumstances will I be paying this unjustified “parking charge”. No, just no!

Shortly after, I received a phone call from the CHC (Continuing Healthcare) department who claimed to have made a personal care payment back in the summer. They didn’t.

I won’t go into details (it’s a long story!) But my battle with Continuing Healthcare has been a lengthy and stressful one, with absolutely no benefit.

Okay, putting things into perspective, this isn’t the end of the world! I’m now sat watching cartoons with my beaut of a nephew. So it aint all bad!

As I say, some days you’re just not in the mood.

Tomorrow will be kinder…we hope!

Anyone got any rum??

Flu | The Facts

Influenza (flu) is a highly contagious and potentially life-threatening virus. The symptoms can develop very quickly and, in some cases, lead to more serious illnesses like bronchitis and pneumonia. It is so important to get vaccinated as soon as the flu season begins (before December ~ UK).

Who is eligible for a free NHS flu jab?

– Aged 65 and over
– Pregnant
– Weakened immune system
– Certain medical conditions e.g. asthma, COPD, diabetes, heart disease, neurological disease
– Carers
– Family members of/living with immunocompromised individuals
– Living in a long-stay residential care home facility
– Frontline health and social care workers
– Children over the age of 6 months with a long-term health condition
– Children 2 years +

Flu Facts:

– Up to 1/3 of flu deaths are in healthy people.
– Public Health England estimate that an average 8,000 people die from flu in England each year, although the figure can be much higher.
– The vaccine is thoroughly tested and has an excellent safety record. The most common side effect is mild soreness around the injection site.
– Getting your flu jab EVERY YEAR is the best way to protect yourself and those around you.
– You won’t be protected against any new strains of flu that may circulate each year unless you are vaccinated every year. Also, the protection from the vaccine declines over time.
– The risk of having a serious (anaphylactic) reaction to the flu jab is much lower than the risk of getting seriously ill from the flu itself.

Related Blog Posts:

Flu Jab: Get Yours Today!

Cough & Cold Season | Chest Infection

Winter | Top Tips to Keep Warm

Winter | Top Tips to Stay Well

Living with a Rare Condition | Mental Health

Yesterday, I discussed my current struggle to overcome a chest infection (not to be underestimated for those with muscular dystrophy).

Of course, living with the rare muscle-wasting condition UCMD has many physical implications on my body:

~ joint contractures, scoliosis, progressive weakness, inability to weight-bear and respiratory decline ~ 

Inevitably, there is an additional impact on my mental health.

For the most part, I am upbeat and stay as active as possible. But admittedly, recurrent chest infections often get the better of me. It can feel like you’re fighting a losing battle, and frankly, it is bloody hard to remain optimistic when life is completely put on hold for months at a time, during which I’m unable to leave the house.

The considerable down-time makes forward-planning almost impossible. Over the years, I’ve missed out on many events and cancelled numerous birthday celebrations due to ill health. It is difficult to commit to social arrangements and accept invitations for fear of letting people down, which then leads to guilt.

When ill, I may…

• Have to cancel plans
• Not respond to calls or messages right away
• Be unsociable
• Be impatient
• Not want to talk
• Be unable to focus or maintain attention
• Spend a considerable amount of time resting and/or sleeping
• Lack motivation
• Be unproductive
• Feel pessimistic, frustrated and emotionally exhausted
• Feel isolated yet unable to see anyone


When I’m ill, I am out of action for a month, sometimes longer. The days are long, tiring, monotonous and utterly unproductive. It is easy to succumb to despair, so for me it is essential to establish a focus and a purpose.

Mental Wellness…

• Rearrange any cancelled plans
• Don’t shut people out
• Accept support from loved ones
• Pet therapy ~ a cuddle from your beloved pet can work wonders!
• If possible, go outside, look up at the sky
• Give yourself a daily reminder of at least 3 positive things in your life
• Say out loud, “I will get through this”, “I will get better”, “I won’t be defeated”
• Don’t overexert yourself. Allow yourself the time and space you need to rest and recover


Life is a gift, but it can also be a bit shit sometimes! Always remember, you are stronger than your struggles. 💪


Related Blog Posts:

Life, Stress & Coping Strategies

Disability & Self Worth | You are not unloveable

Interview | Spoonie Warrior

Wheeling Through Life | A Brief History

Cough & Cold Season

A Life Update | Muscular Dystrophy & Chest Infections

Once again, I’m out of action with a chest infection. Although unpleasant, this isn’t generally a concern for the average person. But for those like me who live with a neuromuscular condition (in my case, UCMD, a rare muscle-wasting disease) a chest infection is not to be taken lightly. It can develop scarily quickly and lead to more serious complications such as life-threatening pneumonia.

I have always struggled with chest infections. Every time I catch a common cold, it heads straight to my chest. As a child this necessitated a course of banana medicine (Amoxicillin), chest physio and a week off school (okay, so it wasn’t all bad).

As I have aged and my condition has deteriorated, I now find chest infections much more difficult to cope with. It can take me a month, sometimes longer to get back to any sort or normal. In the meantime, life comes to a complete standstill.

Due to the severity of my impaired lung function, I struggle to cough effectively and clear secretions, making the seemingly simple act of breathing incredibly difficult. As a result, I become totally reliant on my BiPAP machine, and find removing it for a mere 10 minutes a major challenge.

BiPAP machine ~ noninvasive ventilation

When I feel myself getting ill, I throw everything at it:

• Antibiotics
• Steroids
• Expectorants
• Nebuliser
• Respiratory physio
• Rest
• Stay hydrated and eat as much as possible for energy and sustenance
• BiPAP to support breathing

But in the end, for me, it really is a case of waiting it out and remaining as positive and defiant as possible.


Obviously, this is just my personal experience. There are many forms of muscular dystrophy, and each individual reacts and responds differently to respiratory illness. But one thing is true for all of us –

chest infections are no laughing matter!

You may often see members of the NMD community banging on about infection control and the importance of the Flu jab, and with good reason! For us, this really is a matter of life or death.


Related Blog Posts:

Top Tips: Staying Well in Winter

Emergency Care: My Experience

Abulance Action | MDUK

Lost Time | Chronic Illness

Muscular Dystrophy | A Guide for Parents

Guest Post | Employing Older Workers

Are Employers Doing Enough to Help with the Wellbeing of Older Workers?

The business world is going through a radical change to workforces right now. According to the Office of National Statistics (ONS), one in four workers in the UK is now aged over 50.

Research commissioned by the Department for Work and Pensions (DWP) found that from 2011 to 2014, the proportion of workers aged 50 and older rose from 21% to 24%. The same ONS survey estimated that, by 2030, the number of people in the UK aged 65 and older will have increased by 50%, while those aged 20 to 30 would see a 4% decline.

This figure may vary depending on a variety of circumstances including the location, industry, policies and more. One thing’s for sure though; these changes will have far-reaching consequences across society, including the workplace.

With this in mind, it’s even more important to acknowledge and invest in supporting the changing workforce. Organisations are now in competition for the best and most experienced staff.

In this article, we explore what this means for businesses. We identify areas where employers can further support their older workers and offer some tips for ensuring their wellbeing.

Older Workers and Wellbeing

Anyone that’s been in employment in the last five to ten years would no doubt have noticed the increased focus on employee wellbeing. It’s the trending buzzword relating to the health and safety of not only the physical but also the mental health of workers.

To keep your workforce happy (and by extension increase productivity), you should consider investing in both physical and mental support.

To achieve this for your older workers, you need to first consider what they need and want in the workplace. Research conducted by CIPD at the Centre for Ageing Better showed that just like younger workers, they’d also like a job that is meaningful, stimulating and sociable.

At the moment, older workers feel less appreciated compared to their younger counterparts. They’d like a job that’s not only flexible but also offers opportunities such as mentoring, training and career progression.

Benefits of Age Diversity

A study by Ageing Better shows employers report greater levels of loyalty, reliability and commitment from their older workers compared with younger colleagues. Their experience in life and in their sector places them in an ideal position to manage themselves and other members of staff.

According to a survey by CIPD, the number one benefit of age diversity in the workplace is knowledge-sharing. They found that 56% of HR decision-makers believe that older workers transfer vital knowledge and skills.

Having a diverse workforce, not only in age but also race, religion and (dis)ability can also help to solve complex work problems. By bringing a mix of ideas, skills, strengths, experiences and backgrounds, you’re ensuring that strengths and weaknesses are balanced.

Finally, because of the estimated increase of over 50 year-olds in the general population in the UK, age diversity in the workplace can help to match the profile of your customers which will, in turn, improve the product or services you offer.

4 Tips for Supporting Older Workers

Be open to flexibility: This is important to workers of all ages. It helps them to create a balance between their work and social life. Specifically, for older workers, it also provides a transition period to retirement. Remember to inform your staff of their right to make flexible working requests.

Mentoring: By allowing your older workers to mentor younger employers, they’re able to pass on their experience, work habits and attitudes towards work.

Training: Some employers are concerned about this investment because they worry that they’re investing in someone who may soon retire. However, it’s worth noting, training these workers means as well as keeping their skills sharp, they’ll be more employable.

Employee Assistance Programmes: As well as retirement benefits, you should also be supporting them while they’re still at your company. Offering employee assistance programmes gives workers access to support that’ll help them deal with personal problems that might impact their work performance or their health and wellbeing.

On top of all this, you should also be conducting regular one-to-one meetings to review their performance, offer feedback and keep on top of any issues.


My thanks to David Price from Health Assured for providing this guest post.