Anxiety – Disability & Lifestyle Blog

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.

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…?

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.

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!

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!