Muscular Dystrophy & Mental Health | Personal Strategies

My previous blog post touched on the topic of mental health and physical disability.

In response, a few people asked how I manage my mental health:

What exacerbates it, and what strategies I use to alleviate the symptoms ~

Although I dislike using the term ‘depression’ in reference to myself, it is something I suffer from, as, I believe, we all do to some degree and at some stage in our lives.

My bouts of depression are very much situational ~

I am a 32 year-old woman with a rare, progressive form of congenital muscular dystrophy. I am a non-ambulatory powered wheelchair-user, and I currently live with my parents in their home (not through choice).

How Depression Affects Me:

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.

Muscular Dystrophy & Mental Health

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.

As a powered wheelchair-user with congenital muscular dystrophy, I can’t go running, walking, swimming, cycling or to the gym.

Me, in my powered wheelchair

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.

Related Blog Posts:

Physical Health & Mental Health

Living with a Rare Condition | Mental Health

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”

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!

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!

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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