“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.
For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.
I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!
In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!
This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.
My Life Lessons
Stop caring what others think of me
(because, actually, they’re probably not thinking anything)
I can trace this back to a comment made by a fellow pupil at primary school who told me, “you look normal when you sit down but really weird when you walk”.
I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.
Take me as I am or not at all.
Be my true, authentic self
I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.
His answer made an impression on me:
“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”
Man, he was…DEEP!
Don’t waste my time, effort or tears on those who don’t care
I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.
I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.
Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.
For the past three weeks, I’ve been battling Covid, having tested positive on 27th October. I was, in fact, due to receive my booster jab the following day. Bloody typical! Despite being double vaccinated, the virus hit me hard, really hard.
Physically disabled from birth, I’m one of the many considered ‘clinically extremely vulnerable’.
My condition, Ullrich congenital muscular dystrophy, is rare, progressive and affects lung function. This is made worse by a spine that’s as crooked as a question mark and a squashed torso.
I’ve always been a “sickly kid”, susceptible to respiratory viruses, which become more and more difficult to overcome, the older I get.
Throughout my 32 years, a considerable amount of time has been spent in hospital. I’ve endured several bouts of pneumonia, pleurisy and a collapsed lung. Furthermore, my immune system is very much suppressed and affected by at least 15 surgeries under general anaesthetic – I stopped counting after a while.
It’s fair to say, my fragile, little body has taken a battering. And I am tired.
These days, it takes at least a month before I even begin to improve. Life quite literally comes to a stop. Once symptomatic, I become dependent on my BiPap ventilator 24/7. I go from bed, to chair, to bathroom. And that is how I exist. Time becomes meaningless and the days merge into one.
~ I’m not including photos of myself whilst ill because, well, I don’t want to. I don’t have the energy or interest for selfies, and, I don’t want pity. I don’t allow anyone other than my parents to see me in this state, it’s simply personal choice. ~
Few people really empathise and grasp the seriousness of the situation, which I totally appreciate. It’s difficult to comprehend something you haven’t seen or experienced for yourself. Admittedly, 20 year-old me wouldn’t understand either.
Life back then was very different. I was a night owl, regularly staying up until 4am and feeling fine the next day. I completed a coursework focused university degree, spending some days on campus from 9am – 9pm, followed by a 40 minute drive home. Though never a party girl, I did my fair share of drinking and socialising. Trips away with friends involving going out all day and every night, then clambering back to the hotel in the early hours just didn’t affect me. I had the energy and ability to do the things I wanted to do, and it was fun.
These days, it takes everything I have to get out of bed (assisted by carers) and shower.
It’s not the life I wanted or hoped for. But it’s all I have to work with. And yes, it does affect my mood, attitude, point of view and relationships.
A LOT of my time is spent resting. Of course, I would much rather be out, exploring, experiencing, making memories, living it up, and doing fun, daring, exciting activities. But I simply can’t.
Though I try to hide the severity of my condition, a select few people, whom I trust and am closest to, know how much I struggle.
I only told four people about my Covid diagnosis. Mainly because, well, it isn’t the happiest subject, is it! And right now, all of my resources are focused on recovery.
Inevitably, word gets around, and neighbours as well as family friends are also now aware. And they’ve been absolutely incredible.
To the people who expressed genuine concern, care and support – thank you so very much! You know who you are, and I value each and every one of you.
The generous gifts, cards and daily messages have been a huge comfort. I’ve even received medical supplies, vitamins and immune boosting supplements from friends! Real friends who step-up when life is pretty shitty.
Knowing that people care is worth more than anything in life.
To close this rather rambly and inarticulate post, I want to pay the biggest tribute to my parents, particularly my mum, who has patiently cared for me throughout, and not left my side. It’s not only my life that’s been put on hold by Covid, but theirs too.
For those who don’t know, I still live with my parents, in their home. It’s far from ideal and we do butt heads from time to time. But the love and loyalty is unconditional.
My mum is 67, suffers from arthritis, and, four years ago, underwent knee replacement surgery. She’s lead an incredibly challenging life, which I won’t go into. She is an UNPAID carer. She does not receive a single penny to care for me, and yet, she does it without question or complaint.
To whoever is reading this, please acknowledge the country’s thousands of unseen, undervalued, unpaid carers. Let’s raise awareness of the situation and show them some care, support and gratitude!
Those who work regular 9-5 jobs get to come home at the end of the day and relax. For family carers, the work never ends. It is relentless, grueling, and it impacts their lives as well as their mental and physical 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.
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.
This wasn’t a conscious decision at all. I simply don’t believe in churning out meaningless content purely for the sake of it, so felt it best to wait.
A lot has happened over the past 12 months, both good and bad…
Of course, we’ve endured lockdown and are continuing to feel the effects of Covid, with many disabled and chronically ill people still shielding.
To protect myself and others, I received the Astra Zeneca vaccine back in March – Woop!
While this offers a lot of relief and reassurance, it is important to remain considerate of the many thousands, like me, who are high risk.
Covid isn’t going away, but neither are we! Disabled people are very much a part of society and we should not be ignored or disregarded.
To further protect myself through the harsh winter months, I’ll be getting the Flu jab at the end of September – A thoroughly beneficial prick! I urge you all to do the same, if possible.
On a personal note, we sadly lost my Nan back in January. A tough old bird ‘til the end, she made it to 94, despite smoking forty-a-day, from the age of 12-70!
I will miss her endlessly engaging, witty stories.
We recently gathered as a family to scatter her ashes alongside Stourbridge canal. Despite the occasion, it was actually a really lovely day.
My 4 year-old nephew was an absolute star, “helping to push” me, in my powered wheelchair, the entire way along the bumpy canal path. That kid keeps me going – literally!
Accompanying us was the newest addition to the family, my gorgeous niece, baby Sophie, born in June. A funky-haired little ray of sunshine.
Next month, I’ll be glamming up to attend the wedding of one of my best friends. Having known each other for over 20 years, I’m excited and proud to see her walk down the aisle.
I will attempt to take photos on the big day, but make no promises. I may be distracted by cocktails! Pray there be cocktails…
Beyond that, my plan is to fully embrace the approaching crisp autumn days and cosy nights with hot chocolates, candles and cuddly blankets. Yes, I’m old. Do I care? Naaaaaah!
Oh, this year, I also discovered I really dislike figs! They have the strangest texture. Much like chewing on the sand smothered sandwiches my mum used to make for us to eat on the beach as kids. Mmm, gritty!
Influenza (flu) is a highly contagious and potentially life-threatening virus. The symptoms can develop very quickly and, in some cases, lead to more serious illnesses like bronchitis and pneumonia. It is so important to get vaccinated as soon as the flu season begins (before December ~ UK).
Who is eligible for a free NHS flu jab?
– Aged 65 and over
– Weakened immune system
– Certain medical conditions e.g. asthma, COPD, diabetes, heart disease, neurological disease
– Family members of/living with immunocompromised individuals
– Living in a long-stay residential care home facility
– Frontline health and social care workers
– Children over the age of 6 months with a long-term health condition
– Children 2 years +
– Up to 1/3 of flu deaths are in healthy people.
– Public Health England estimate that an average 8,000 people die from flu in England each year, although the figure can be much higher.
– The vaccine is thoroughly tested and has an excellent safety record. The most common side effect is mild soreness around the injection site.
– Getting your flu jab EVERY YEAR is the best way to protect yourself and those around you.
– You won’t be protected against any new strains of flu that may circulate each year unless you are vaccinated every year. Also, the protection from the vaccine declines over time.
– The risk of having a serious (anaphylactic) reaction to the flu jab is much lower than the risk of getting seriously ill from the flu itself.
With less than a fortnight until All Hallows’ Eve, here I bring you a few book and movie suggestions to get you in the spirit (you see what I did there – spirit!? Oh, never mind…)
*To check out my top picks from last year, click here.*
IT: Chapter One (2017) Dir. Andy Muschietti
IT: Chapter One is definitely my movie choice this Halloween. If you haven’t already seen it, why not check out a late night screening at your local cinema?
I went to see it with my two older brothers and I’ll be honest, I wasn’t expecting much from this remake based on the novel by Stephen King. But, in my opinion, it’s well made and the casting is spot on. There’s just the right mix of thrills, fright, gore and even humour.
I’m not a fan of horror films in general, simply because I’ve never found one that has scared me. I must say though, this one impressed me!
Hotel Transylvania (2012) Dir. Genndy Tartakovsky
This animated fantasy film, along with it’s sequel, will entertain younger kids and grown-ups alike. Fast-paced and fun-filled, there’s plenty to keep a younger audience engaged, while quirky gags and more mature references will amuse adults.
Hotel Transylvania is essentially about family and the universal theme of a parent reluctantly letting go of their grown child.
Count Dracula, voiced by Adam Sandler, is throwing a 118th birthday party at his hotel, for daughter Mavis. The hotel is a place where monsters can gather and feel safe from the threat of humans, whom they fear. But, trouble starts when 21 year-old Jonathan (Andy Samberg) loses his way and finds himself at what he thinks is an extravagant fancy-dress party. Jonathan, a human, soon locks eyes with vampire Mavis – the only child of Count Dracula – and the pair fall in love.
The story is predictable, but it’s aimed at children and so this is to be expected. However, if you’re looking for a film to occupy the whole family this Halloween, I would recommend this one!
Dracula by Bram Stoker
Following on from Hotel Transylvania, it seems appropriate that I select Dracula, written in 1897, as my top pick – though obviously this one is not for the kids!
A gothic horror, the novel is written in epistolary format (a series of documents) and tells the story of Dracula who travels from Transylvania to England in order to feast on fresh blood and spread the undead curse.
He boards a Russian ship, the Demeter, which reaches the northeast shores of Whitby, (where I recently visited).
While there, Dracula becomes obsessed with a young woman named Lucy and begins to stalk her. Lucy soon begins to waste away and is diagnosed with acute blood-loss, though Dr Abraham Van Helsing cannot understand how or why. Eventually Lucy dies, but not before Van Helsing identifies the puncture wounds on her neck. Failing to prevent her from converting into a vampire, he along with three other men, kills her by staking her heart and beheading her.
A team of vampire hunters, led by Van Helsing, then pursure Dracula himself, which leads them to London. In retaliation, Dracula places a curse on Mina, the wife of one of his pursuers.
Through hypnotising Mina, the group are able to track Dracula, who has returned to his castle in Transylvania…
The Signalman by Charles Dickens
If you’re looking for a quick read, this classic short story is the perfect choice. A haunting and spooky tale, it will stay with you long after reaching the shocking conclusion.
Written in 1866, it tells the tale of a railway signalman, troubled by phantom appearances and supernatural goings-on. Over two nights, the signalman meets with the narrator, whom he invites into his gloomy cabin to share his worries and premonitions.
At first reluctant to tell his story, the signalman soon confides that these ghostly visions precede tragic and fatal events on the line. The first being a collision of two trains in the dark tunnel involving many casualties. The second incident saw a young woman lose her life on a passing train.
Convinced these premonitions are all a figment of his imagination, the narrator urges the signalman to see a doctor. However, it may already be too late…
I hope you all enjoy Halloween, whatever you get up to!
If you enjoyed this post, please let me know in the comments below, and don’t forget to share ~ Thank you!
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.
Just a quick post today. As promised here are this years pumpkins. Unlikely to win any awards, granted, but not too shabby I reckon. They’ll do for me anyway.
Not one to put anything to waste, I thought I’d try my hand at making spiced pumpkin soup for the second time. The first and last attempt was a few years back, and so I decided it was about time to give it another go.
All you need to do is dice the pumpkin flesh into small pieces, chuck in a saucepan with a drizzle of oil and reduce down on a medium heat. Once softened, add onion, tomato purée, spices of your choice (no more than half a teaspoon) and a little double cream. Heat through, season to taste and blend for a smooth texture.
Do excuse the ice cream pot folks. This is going home with my brother so that he can warm it up for his supper. What a wonderful sister I am!
As suggested in my previous post, I chose to simply roast the pumpkin seeds for 20 minutes. Served in a snack bowl for a light bite on Halloween night, you can’t go wrong with this easy treat.
Admittedly I’m not looking forward to the dark days and frosty nights that winter will surely bring. The invigorating colours of autumn will be greatly missed, as will the mild temperatures we’ve experienced of late. Nevertheless, embrace it and face it I say, after all it’s headed our way.
Will you be sad to wave goodbye to October, or are you counting down the days to Christmas now that Halloween is almost over for another year?
I love Halloween, always have always will. I can’t explain exactly why I love it so much, after all nothing particularly exciting happens. I guess it just appeals to my inner child. Either that or it’s my curious fascination with the macabre! I’ve never attended a themed party nor have I been trick or treating as a kid. My parents are quite conservative and so wouldn’t allow myself or my brothers to go “bothering people for treats”.
As an adult I’m more of a ‘cosy night in’ type anyway, so my ideal Hallows’ eve involves cosying up in front of a wood burning fire with a hot chocolate, a scary film and the lights out. Wild eh!
Black dog in place of a black cat?
I must admit I really don’t scare easily. I find most horror films predictable and silly rather than spooky. I can honestly say I’ve never watched a film that has genuinely frightened me. However, when channel flicking one night, by chance I caught one that made a memorable impression…
Saw (2004) Dir. James Wan
This is the first film by Aussie duo James Wan and writer/actor Leigh Whannell. On a minimal budget they made this really clever and creative film that has spawned a whole franchise.
The basic plot sees Oncologist Lawrence (Cary Elwes) and photographer Adam (Whannell) wake up in a filthy, dilapidated bathroom, both chained to pipes at opposite sides of the room. Between them lies the corpse of a man who holds in his hands a revolver and a cassette player. The two men soon realise that they’re only way of escape is to play along with the game set by the sadistic ‘Jigsaw’ killer.
Personally I wouldn’t bother with any of the sequels; as you would imagine they’re rather unimaginative and repetitive. However, the original Saw has a simple but great premise and a shocking concluding twist that will leave you gripped to your seat.
*Tip* if you have the patience to sit through a whole movie commentary, I thoroughly recommend you check this one out. An informative and animated discussion including impressions and plenty of laughs; you will see this psychological horror film from a whole new perspective.
Hocus Pocus (1993) Dir. Kenny Ortega
If you’re looking for a fun family film, you can’t beat this classic starring Bette Midler. Although it’s been over 20 years since it was made, it hasn’t dated and is still just as enjoyable as it was on its initial release. Midler, Kathy Najimy (Sister Act) and Sex and the City’s Sarah Jessica Parker, as the three witches are the standout attraction. Jam-packed with music, magic, adventure and plenty of laughs; both young and old will revel in the delights of this Disney experience.
If nothing else, you’ve got to carve a pumpkin for Halloween! It’s something simple you can do, especially with children, to partake in the seasonal celebrations. It’s fun, messy, creative and cost effective. To me it’s the first thing I associate with Halloween and as such my family and I carve one every year. We always intend put the removed flesh to good use, though we rarely do. My brother and I did make pumpkin soup a couple of years back which seemed to go down well!
Other pumpkin recipes you might want to consider include, of course, traditional pumpkin pie, as well as muffins, smoothies and even ice cream. A member of the squash family, you can also dice it into chunks and roast or bake it. You could use it in curry, casserole and risotto or carve out smaller pumpkins and stuff them with whatever you fancy; a slight variation on stuffed bell peppers.
And don’t forget the seeds! Pumpkin seeds are highly nutritious, containing iron, heart healthy magnesium, copper, manganese, protein, antioxidants and zinc for immune support. Naturally high in fibre and omega-3 oils, they’re hugely beneficial and easy to incorporate into your diet. Roast for 20 minutes for a quick and easy snack on the go, sprinkle over salads, porridge and muesli. You could add a few to your cakes, flapjacks and stews for extra crunch, make some pumpkin seed loaf, or you could simply blend until smooth for your very own pumpkin seed butter.
So when you’re eagerly carving away, please don’t cast aside the gift that’s inside. Proven to help the heart, liver and the immune system, these little seeds also act as an anti-inflammatory, a sedative for a good night’s sleep, and an insulin regulator. Essential for men and women, they have been found to promote prostate health and suppress menopausal symptoms. See, Halloween can actually be good for you!
I’ve not yet bought this years pumpkin so once it’s carved and ready for display, I’ll post some pictures for you. Every year I attempt a different design but for the moment I’m undecided which way to go. I warn you in advance though, limit your expectations (I can sense the excitement already). As previously mentioned, I have a muscle wasting condition and so must work within my means. I’ll not be producing anything too adventurous.
I’d love to hear all about your Halloween plans. Do you enjoy it as much as me or are you the type to shut the curtains and ignore the trick or treaters tapping at your door?