Darker Days & Silver Linings

Happy Halloween, folks!

As much as I love the spooky season, I’ll be glad to see the end of October this year.

I fell ill on the first Saturday of the month, and I’m still not fully recovered.

It’s now over 4 weeks since I left the house, or saw anyone other than immediate family and carers.

For me, this isn’t unusual. Prolonged periods of chronic illness and isolation are, unfortunately, all too familiar.

A simple cold can very quickly progress into pneumonia – a frequent occurrence over the years, resulting in lengthy hospital admissions.

The vast majority of people don’t understand how I can be so ill for so long. Why would they? It’s hard to comprehend something you’ve no knowledge or experience of.

Muscular Dystrophy

This is why my primary aim is to inform and raise awareness of the rare condition, Ullrich congenital muscular dystrophy.

Most so-called medical professionals are totally clueless. It’s therefore no surprise that I’m met with blank faces when telling people about my disability.

Muscular Dystrophy? What’s that?

Explaining the ins and outs of my condition and how it affects me, can be exhausting. But it’s also important.

I’m almost 34, and, for me, the most debilitating and frustrating part of my disability is the daily fatigue and impact on my respiratory health.

As the saying goes, ‘health is wealth’.

Living with Chronic Illness

It can be incredibly difficult to remain optimistic when living with a progressive condition and chronic illness.

This past month has been tough!

Following three decades of cancelled plans, missed opportunities, and life on pause, here are a few things I’ve learnt:

1. Never make decisions when at your lowest.

2. Try not to withdraw or push people away. Knowing I’m unable to commit to plans, it can be easier to distance myself from people to avoid letting them down.

3. Reach out to loved ones.

4. Find joy in simple things.

5. Don’t waste valuable time, energy and effort on that which doesn’t serve you.

6. Set goals and make plans!

7. Focus on what and who matters most to you.

Riding the Wave | Lockdown Perspective

Disability Lifestyle & Lockdown

I was born with a rare, progressive form of muscular dystrophy. Besides being a non-ambulatory wheelchair-user, my condition comes with many other complications.

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.

Abide!

My Perspective

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. ~

Coronavirus UK | Still Shielding

 

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.

[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
 

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.

[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
 

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.

Showing Gratitude

In my previous post, I suggested writing a list of all the positive things in your life.

We’re currently experiencing tough times, but there’s still much to be thankful for.

With that in mind, here’s my list of gratitude…

1. Video calls with my brother and nineteen month-old nephew. “My no go nursery, Cazzy!” He’s quite happy going on “doggy walks” with Daddy.

2. People are realising the value of the NHS and care workers.

3. Receiving messages, calls, letters and cards from friends.

4. Blue skies, sunshine and warm weather to lift spirits.

5. Nature and Spring time. Venturing outside and exploring nature is great for improving our mood and mental health.

6. Community spirit – everyone is playing their part by volunteering, working and offering practical and emotional support.

7. My wimpy Labrador is much happier now that we’re not receiving visitors. No people – Yay!!

8. This lockdown period provides time to rest, sleep, think, plan and do the things I have been putting off, like decluttering my bedroom.

9. Environmental pollution is reducing, air quality is improving in cities, and the planet is slowly starting to recover.

10. I am fortunate to have a safe, comfortable home and a caring, loving family.

11. Finally, quarantine means there’s no pressure or expectation to shave or wax my hairy lady bits! Girls, you know what I’m talking about!

What’s on your list…?

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”

Decisions & Difficult Discussions

As a powerchair-user with congenital muscular dystrophy, I am at high-risk of developing serious complications should I contract Coronavirus.

So, I’m kinda hoping I don’t!

As much as I love them and couldn’t be without them, my folks have adopted a rather casual attitude towards the whole situation, disregarding it as, “just one of those things”.

I won’t sugar-coat, there have been arguments and tears of frustration. It’s pretty tense and stressful in our house at the moment, as I’m sure it is for many.

My big bro called the ‘rents a few times to enforce the importance of social distancing. It is comforting to have some back-up, especially coming from my great defender!

Sometimes, I do feel like I’m banging my head against a brick wall.

It was only on Saturday night that my Mom announced, “I’ve never known anything like this in my lifetime”.

It really was a light-bulb moment! The seriousness of the current situation seemed to finally hit home.

My brother is a teacher, his wife a business woman, and my two year-old nephew, who I see every week, attends nursery. They are therefore in contact with many different people on a daily basis.

Naturally, this lead to discussions about what we do going forward. He basically told me, “it’s your call!”.

Now, I’m not remotely materialistic and am somewhat an introvert. Missing out on holidays, going to the cinema, to restaurants, pubs and shops doesn’t particularly bother me. It isn’t forever.

All that really matters to me is the people I love – soppy cow! To be without them really is a killer!

It’s a case of weighing up the risks, being safe and sensible but also not denying ourselves life itself.

So, this week, instead of having my gorgeous nephew at home with us, we’re going for a woodland walk. We will be enjoying each other’s company, while keeping a “safe” physical distance.

My nephew on a woodland walk
My nephew on a woodland walk

My nephew on a woodland walk
My nephew on a woodland walk

My black Labrador walking down a country lane
My black Labrador walking down a country lane

It will, no doubt, be a challenge with an affectionate little boy who doesn’t understand what’s going on (and, thank feck he doesn’t!).

But, at the end of the day, it is what it is. We’ve all got to make do and get on with it, in the best way possible.

A motivational quote from Frida Kahlo
A motivational quote from Frida Kahlo

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…

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

The Winter Edit: Part 2

5 Tips to Stay Well through Winter

The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread.

How can we best prepare ourselves for winter?

We are 80% more likely to catch a cold during winter.

Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.

Click here for Part 1 ~ Top Tips to Keep Warm through Winter!


1. Stock up on supplies:
Medication –


• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home, should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.

Contacts –

• It’s good practice to have a list of contacts, in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!

2. Nutrition:

• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. If you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water, so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.

• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!

Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.

3. Cleanliness:

• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Replace your toothbrush after you have fully recovered from an illness.

4. Physiotherapy:

• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.

5. Avoid Germs:

• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. For me, a common cold can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
Wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.


I really hope this was helpful! Please SHARE this blog post so that others may benefit.

I’d love to hear from you – what do you do to stay well throughout winter?

Flu Jab: Get Yours Today!

Well, it’s upon us again; Flu season is here. Every year my family and I get the Influenza vaccination, which is free of charge here in the UK, courtesy of the NHS.

For as long as I can remember, I’ve had the Flu jab to protect myself through the harsh winter months. It’s important that not only I am vaccinated, but that those closest to me are too. My immune system is much weaker than average, and my condition makes it considerably more difficult to overcome respiratory infections. For me, a common cold can quickly develop into something much more serious. It’s therefore very important that I am not unnecessarily exposed to the Flu virus.

As I have aged, my declining respiratory function has become the most concerning symptom of my disability. Ullrich congenital muscular dystrophy causes muscle degeneration and scoliosis. Not only are my lungs squashed and unable to expand as they should, the muscles that make them force air in and out are slowly wasting away.

Over the years, I have fought recurrent chest infections, several bouts of pneumonia, pleurisy and an acute pneumothorax (collapsed lung), requiring a chest drain. Many long, drawn-out days have been spent in hospital trying to overcome serious complications resulting from respiratory viruses.

For this reason, I implore and encourage you all to go and get the Flu shot. It takes no time at all and I promise you, it’s completely painless. There are fables floating around that will attempt to make you believe the Flu jab can give you the Flu. This is not the case at all. Yes, the vaccine does contain a small dose of the inactive virus. This triggers antibodies, which within two weeks will protect you, if and when you’re exposed to seasonal Flu.

Like all viruses, there are various strains of Influenza which change annually. For this reason, it is essential to ensure you are vaccinated every year.

I visited my local pharmacy, without appointment, a few weeks ago to get my free vaccination. If you haven’t already, please don’t delay. Go and get yours NOW!

For more information on the Influenza vaccine visit the NHS web page here.


Related Blog Posts:

Flu | The Facts

Winter | Top Tips to Keep Warm

Winter | Top Tips to Stay Well

Cough & Cold Season | Chest Infection