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. 💪

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.

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.

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!

Tag: spoonie