Lockdown | Positive Thinking

I’ve read many trivial complaints on social media about the Coronavirus lockdown.

From park, pub and salon closures, postponed gigs and concerts, to cancelled botox, filler and wax appointments. Some are even moaning because they can’t race around and show off in their flashy cars. What a shame!

I appreciate we all have our own interests, outlets, coping mechanisms and methods of self-care. We all want to look and feel our best, and we all need somewhere to escape to.

But please, let’s try and keep things in perspective.

The current situation isn’t permanent. Of course, it’s tedious, stressful and frustrating, and will impact some considerably more than others. But it will pass and “normal” life will resume.

People on the frontline are literally risking their lives to help others – complete strangers. They are physically and mentally exhausted, yet keep going.

Carers continue to support the most vulnerable in society, despite the risk.

Key workers carry on working to ensure society functions and people are provided for.

On the upside, lockdown provides an opportunity for families to unite, spend quality time together and talk more.

But for others – men, women and children – being stuck in close proximity, unable to escape, can be a living hell.

The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since lockdown began!

We all have problems and we are all entitled to feel and express what we need to in order to get through these trying times. Your experiences and frustrations are valid.

But please, keep in mind the medics, carers, key workers, the elderly, disabled, those living with domestic abusers and those separated from their loved ones.

Try to appreciate what you do have – for example, your health, home, and hope for the future.

When you’re feeling low, maybe write a list of all the positive things in your life and focus on that rather than the things you are currently missing out on.

Quote from Bob Dylan, "keep on keeping on"
Quote from Bob Dylan, “keep on keeping on”

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…

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!

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

Disability & Self Worth | You are not unloveable

I think most people living with a chronic illness, disability or mental health issue can relate to this quote, at least to some extent. I know I do.

I am limited by my physical disability (congenital muscular dystrophy), despite the claims by some that you can do anything if you just try hard enough. As a non-ambulatory wheelchair-user with a muscle-wasting condition, I’m afraid there are certain things I cannot do.

I am heavily reliant on others to carry out daily activities such as cooking, cleaning, locking doors, opening and closing windows and so on. I also need help with personal care tasks like getting in and out of bed, dressing and bathing. This can be undignified, thus affecting my confidence and making me feel incredibly self-conscious and utterly undesirable. After all, who wants their boyfriend to shower them?!

I HATE asking people to do things for me, as I then feel a burden, a nuisance, an annoyance. Having to ask people to simply open a bottle or a can at the grand old age of 30 is frankly embarrassing (for me).

Sometimes I refuse to speak up and request help. Call it pride or sheer stubbornness. But there are other times I have no choice. Like it or not, I have to ask, to instruct, to explain.

For the most part, I’ve managed to conceal the extent of my disability from those around me. Many people, friends included, think I am much more able and independent than I actually am. Again, put it down to pride. But there are some people I can’t hide this from. Family members, of course, but also anyone I am romantically involved with.

Due to the nature of my disability and all the added extras – care requirements, dependency, restrictions, the inability to be spontaneous – I always believed myself to be undeserving of love. I genuinely thought *think* of myself as an unnecessary burden. Why would anyone put up with me, my weak, crooked body and all of my baggage when they could choose to be with someone else?

As a result of this and a lifetime of rejection, I put up barriers and distanced myself from society; a form of self preservation. Being told repeatedly that I’m not good enough, I’m “no one’s type”, and “too much to take on” has made quite a negative impression on my self-esteem.

Now, I don’t want to ramble or get too personal. But I am slowly starting to trust and believe I am worthy of love and companionship.

They say there’s someone for everyone. The cynical part of me still questions this. But maybe, just maybe, there is.

It takes an extra special person to accept me and my care needs. To take on, without question, a pretty drastic lifestyle change. To see past the wheelchair, the crooked body, the medical equipment and the disability itself, and simply love me for me, unconditionally. To try to convince me every day that I’m not undesirable, unloveable or a burden. People like this are rare, but they are out there!

Guest Post | NHS Funding

Resource Allocation: A classic medical ethics topic that often rears its head in the inevitable reality of working in a cash-strapped public healthcare system.

Should the NHS fund this new expensive treatment for a rare disease?

Should the government pay for a new experimental cancer treatments?

Should X procedure be on the NHS, or Y?

The list is endless.

This blog covers a few basic ideas and concepts for you to broaden your understanding of why things are done as they are, enhance your opinion and help you think of the bigger picture.

Utilitarianism

One way of analysing resource allocation is using a utilitarian approach. Utilitarianism describes the moral theory that the most moral action is that which maximises the happiness (or in this instance healthiness) of a population. This seems quite a nice logical and fair systematic approach, but has one major drawback.

How do you quantify the benefits gained from a specific treatment?

Fortunately, Alan Williams, a health economist calculated a measure for doing this – the Quality Adjusted Life Year. This system described not only the length of life a specific treatment can give a patient, but also factors in the subjective quality of that life.

Interestingly, some of the ‘best’ treatments by this system including cataract surgery and hip replacements, owing the massive improvement in life these can bring (even though they are rarely viewed as life extending). However, despite quantifying the ‘best value’ treatments, this system still has its drawbacks.

Firstly, many argue that this system ignores both the old, and the chronically ill. The old will have fewer ‘life years’ per treatment and the chronically ill will have a lower ‘quality of life’ per treatment by this system, and will thus lose priority in this system.

This a great concept to think about as many new drugs are for specific diseases, which are often rare and chronic, or those which affect the elderly. Secondly, ‘quality of life’ is a highly subjective term, and, although this system goes someway to quantify it, the end result is still a subjective rating score.

Egalitarianism

Another way of analysing these topics are through an egalitarian approach. This theory states that resources should be distributed equality unless an unequal distribution would work to everyone’s advantage. However, in reality, there is not unlimited funding and therefore equality of distribution means that expensive treatments (the new drugs often featuring questions) could not justifiably be funded.

This approach does promote a decent minimum standard of care (good for everyone) and some argue that more expensive treatments can be funded elsewhere. For example, charities and private companies could find a place in an egalitarian healthcare system to fund more niche treatments.

Libertarianism

Another viewpoint worth nothing (though one which many, especially in the UK, would be against) is that of libertarianism. This system states that healthcare should follow individual liberties and free market principles – i.e to be privatised. This is an interesting viewpoint to discuss, but, given the many drawback of private healthcare and the NHS in the UK, it’s not one we in the UK really consider.

So, there we have it, a few basic approaches to the classic question of ‘should we fund this expensive new drug’.


This guest blog post is provided courtesy of writer Adi Sen, from the website UniAdmissions.

Disclaimer: The views and opinions expressed in this article are those of the author (UniAdmissions), and do not necessarily reflect the official policy or position of myself or any other organisation.

International Women’s Day

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history.

These women advocate equality, inclusion and disability awareness.

Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).

Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.


What International Women’s Day Means to Me

Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.

Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.

These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.

The single mum’s.

Those living with debilitating conditions and struggle to get out of bed each morning.

Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.

Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.

Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!

They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.

So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!


Related Blog Posts:

International Women’s Day 2018

Interview | The Trailblazing Women of Muscular Dystrophy UK

Life, Stress & Coping Strategies

While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.

I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.

I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.

For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?

My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.


Here are a few of my coping mechanisms:

1. Music therapy ~

Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).

(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)

There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!

Here is a recent guest blog post I wrote for Mitch Coles, listing some of my top tunes!

2. Time with loved ones ~

Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.

He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…

3. Alone time ~

Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.

4. Get out the house ~

Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.

5. Avoid social media ~

It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.

This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.

Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.


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