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.

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.

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.

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.

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…

February | Love & Kindness

This month, we’ve embraced/endured Valentine’s Day, and celebrated Random Acts of Kindness Day.

All of this has made me think about relationships and what they really mean.

Valentine’s Day Selfies

We’ve all seen couples posting impossibly idealistic, airbrushed selfies on social media, making us believe their lives together are perfect and they couldn’t want for any more in a partner.

Ha! Who are you trying to kid? (Call me cynical).

But the truth is, when you live with someone, whether it be family, friends or a partner, you will inevitably, at times, rub each other up the wrong way and fall out. To think otherwise is, frankly, naive.

They may be senseless, petty disagreements or more serious conflicts. The important thing to consider is how you react and resolve such issues.

As the saying goes, never sleep on an argument. It may seem daft, but it’s true. An unresolved argument will just fester away.

It’s Good to Talk

Some people, somewhat understandably, choose to avoid any sort of conflict and refuse to acknowledge tension within their relationships; sweeping it under the carpet. This isn’t a healthy approach.

If you have a grievance, talk about it calmly and reasonably. Share your worries and concerns with friends, family and loved ones. Don’t bottle things up. Again, it will just fester away resulting in bitterness and resentment.

It’s Really Okay to Disagree!

We can’t all be the same. If we were, life would be very boring. You don’t have to like all the same things or agree with everything those around you think and feel in order to love them. I repeat; to think otherwise is, frankly, naive.

#BeKind

Kindness isn’t agreeing when you don’t, or avoiding potentially difficult conversations just to keep the peace. Kindness isn’t pretending to enjoy things you don’t simply to please others. Kindness isn’t inflating another person’s ego to make them feel good.

Kindness within relationships is about respecting each other’s views, differences, individuality and needs. It’s accepting that we are all flawed and forgiving sincere mistakes. Kindness is about caring enough to keep each other safe, supported and grounded.

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!

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. 💪

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!

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.

Please follow me on Twitter and Facebook

Interview | Author Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.

Janine Shepherd: A Broken Body is not a Broken Person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person.

It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics.

Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.

Janine, please tell us about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.

I would like to thank the wonderful Janine Shepherd for speaking with me.

Tag: mental health matters