Living with a Rare Condition | Mental Health

Yesterday, I discussed my current struggle to overcome a chest infection (not to be underestimated for those with muscular dystrophy).

Of course, living with the rare muscle-wasting condition UCMD has many physical implications on my body:

~ joint contractures, scoliosis, progressive weakness, inability to weight-bear and respiratory decline ~ 

Inevitably, there is an additional impact on my mental health.

For the most part, I am upbeat and stay as active as possible. But admittedly, recurrent chest infections often get the better of me. It can feel like you’re fighting a losing battle, and frankly, it is bloody hard to remain optimistic when life is completely put on hold for months at a time, during which I’m unable to leave the house.

The considerable down-time makes forward-planning almost impossible. Over the years, I’ve missed out on many events and cancelled numerous birthday celebrations due to ill health. It is difficult to commit to social arrangements and accept invitations for fear of letting people down, which then leads to guilt.

When ill, I may…

• Have to cancel plans
• Not respond to calls or messages right away
• Be unsociable
• Be impatient
• Not want to talk
• Be unable to focus or maintain attention
• Spend a considerable amount of time resting and/or sleeping
• Lack motivation
• Be unproductive
• Feel pessimistic, frustrated and emotionally exhausted
• Feel isolated yet unable to see anyone


When I’m ill, I am out of action for a month, sometimes longer. The days are long, tiring, monotonous and utterly unproductive. It is easy to succumb to despair, so for me it is essential to establish a focus and a purpose.

Mental Wellness…

• Rearrange any cancelled plans
• Don’t shut people out
• Accept support from loved ones
• Pet therapy ~ a cuddle from your beloved pet can work wonders!
• If possible, go outside, look up at the sky
• Give yourself a daily reminder of at least 3 positive things in your life
• Say out loud, “I will get through this”, “I will get better”, “I won’t be defeated”
• Don’t overexert yourself. Allow yourself the time and space you need to rest and recover


Life is a gift, but it can also be a bit shit sometimes! Always remember, you are stronger than your struggles. 💪


Related Blog Posts:

Life, Stress & Coping Strategies

Disability & Self Worth | You are not unloveable

Interview | Spoonie Warrior

Wheeling Through Life | A Brief History

Cough & Cold Season

A Life Update | Muscular Dystrophy & Chest Infections

Once again, I’m out of action with a chest infection. Although unpleasant, this isn’t generally a concern for the average person. But for those like me who live with a neuromuscular condition (in my case, UCMD, a rare muscle-wasting disease) a chest infection is not to be taken lightly. It can develop scarily quickly and lead to more serious complications such as life-threatening pneumonia.

I have always struggled with chest infections. Every time I catch a common cold, it heads straight to my chest. As a child this necessitated a course of banana medicine (Amoxicillin), chest physio and a week off school (okay, so it wasn’t all bad).

As I have aged and my condition has deteriorated, I now find chest infections much more difficult to cope with. It can take me a month, sometimes longer to get back to any sort or normal. In the meantime, life comes to a complete standstill.

Due to the severity of my impaired lung function, I struggle to cough effectively and clear secretions, making the seemingly simple act of breathing incredibly difficult. As a result, I become totally reliant on my BiPAP machine, and find removing it for a mere 10 minutes a major challenge.

BiPAP machine ~ noninvasive ventilation

When I feel myself getting ill, I throw everything at it:

• Antibiotics
• Steroids
• Expectorants
• Nebuliser
• Respiratory physio
• Rest
• Stay hydrated and eat as much as possible for energy and sustenance
• BiPAP to support breathing

But in the end, for me, it really is a case of waiting it out and remaining as positive and defiant as possible.


Obviously, this is just my personal experience. There are many forms of muscular dystrophy, and each individual reacts and responds differently to respiratory illness. But one thing is true for all of us –

chest infections are no laughing matter!

You may often see members of the NMD community banging on about infection control and the importance of the Flu jab, and with good reason! For us, this really is a matter of life or death.


Related Blog Posts:

Top Tips: Staying Well in Winter

Emergency Care: My Experience

Abulance Action | MDUK

Lost Time | Chronic Illness

Muscular Dystrophy | A Guide for Parents

Disability & Self Worth | You are not unloveable

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

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

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

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

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

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

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

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

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

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

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

Ableds Are Weird!?

The recent trending Twitter hashtag #AbledsAreWeird, created by disability activist Crutches&Spice, has got me thinking about my own encounters and interactions with able-bodied society.

Uncomfortable? Awkward? Frustrating? Yup!

Here are some examples of my experiences as a non-ambulatory wheelchair-user (with Ullrich Congenital Muscular Dystrophy). I’m sure they are not unique to me!

Let me know if you can relate to any of the following scenarios…


Accessibility

Stranger: There’s only a few steps.
Me: I can’t walk, hence the chair.
Stranger: They’re only small steps.
Me: Nope, still can’t walk I’m afraid.
Stranger: Oh, not even with assistance?
Me: Not even with assistance.
Stranger: Not even a little bit?
Me: Not even a little bit.
Stranger: Not at all?
Me: Not at all.

Awkward, deafening silence…

Stranger: There are steps but we can just lift you (in a powered wheelchair).
Me: Thanks but this chair is really heavy. There’s no way you’ll lift it.

Stranger then attempts to lift me in my wheelchair, only to complain of the weight.

Stuck in a long queue of fit, young able-bods who look me up and down (in my wheelchair) but still choose to wait for the one and only lift/elevator rather than take the stairs, which would be much quicker!

A young driver in flashy sports car races into a blue badge bay and gets out without displaying a badge.
Me: Excuse me, have you got a blue badge?
Driver: No! Have YOU?!
Me: YEP! (waving my blue badge at the driver while sat in my Motability WAV).

Being unable to access public disabled toilets because they’re being used for storage!

Entering a public disabled toilet after a mother and baby have just used it. It absolutely stinks and there are used nappies on the floor!

Online Dating

Guy: okay, can I be honest?
Me: yes.
Guy: let’s be real, you’re no one’s type. Are you!
Me: erm, thanks!

Me: I can’t walk. I have something called muscular dystrophy.
Guy: oh. Right. Okay…
Me: yup…
Guy: so is that something you could change if you work on your fitness?
Me: no. Afraid not.
Guy: not even if you try really hard and actually make an effort?

Me: I’m a wheelchair-user.
Guy: oh right, what’s wrong with you? You self-propel, yeah?
Me: no I can’t do that, and there’s nothing wrong with me.
Guy: but I’ve seen some really fit girls in wheelchairs. They play basketball and all sorts!
Me: yeah, that’s never gonna be me. Sorry.

Me: I’m a wheelchair-user. I can’t walk at all.
Guy: oh, okay. What happened?
Me: nothing happened. I have something called muscular dystrophy.
Guy: I just Googled it. Wow that really is a disease isn’t it!!
Me: fear not, it isn’t contagious.

Guy: oh, so you can’t walk at all?
Me: yeah that’s right, I have muscular dystrophy so I can’t weight-bear. I use a powered wheelchair.
Guy: okay….
Me: it’s fine if you want to ask questions.
Guy: so…you don’t have sex then??
Me: why’s that?
Guy: well, I’m guessing you can’t feel anything…you know.

Woman: aww, I’m sure you’ll find a nice guy in a wheelchair to date!
Me: or just a nice guy!?

Social Worker Review

Assessor: are you able to make your own decisions?
Me: yes.
Assessor: always?
Me: yes.
Assessor: (with a sceptical expression) but…if you needed advice when making a decision, who would you ask?
Me: myself!?

Socialising

Stranger, whilst leaning over, “It’s good to see you getting out and about”

At a restaurant with a group of friends, all of whom are able-bodied. Waiter comes to our table, looks at me in my wheelchair, and starts rambling about a friend of his who lives near a Paralympian. None of us know quite how to respond.

At the pub with a friend who goes to the bar to get us drinks. When she returns, she says a guy at the bar who she knows told her he didn’t realise she’s now a carer. She had to stop and think for a moment and then replied, “I’m not her carer. I’m her friend! We’ve known each other almost 20 years!”
The guy looked absolutely dumbfounded.

Driving & Mobility

“Wow, you learned to drive? Is that safe? Did you have a special instructor and a special test?”

“Your wheelchair’s a bit battered. Looks like you could do with a new one! I suppose you just call and get a replacement through the NHS?”

“Do you have to have training and a test to drive that thing? [my powered wheelchair]”

“They [wheelchairs] cost HOW MUCH?! Why are they so expensive? Can’t you just save up?”

University

“Oh, you went to university? Good for you! It’s something for you to do, isn’t it. How did you manage though?”


You may also like Life as a Wheelchair-user | Societal Preconceptions

Wheeling Through Life | A Brief History

Highlighting the Ability in DisAbility

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