As much as I love the spooky season, I’ll be glad to see the end of October this year.
I fell ill on the first Saturday of the month, and I’m still not fully recovered.
It’s now over 4 weeks since I left the house, or saw anyone other than immediate family and carers.
For me, this isn’t unusual. Prolonged periods of chronic illness and isolation are, unfortunately, all too familiar.
A simple cold can very quickly progress into pneumonia – a frequent occurrence over the years, resulting in lengthy hospital admissions.
The vast majority of people don’t understand how I can be so ill for so long. Why would they? It’s hard to comprehend something you’ve no knowledge or experience of.
Most so-called medical professionals are totally clueless. It’s therefore no surprise that I’m met with blank faces when telling people about my disability.
Explaining the ins and outs of my condition and how it affects me, can be exhausting. But it’s also important.
I’m almost 34, and, for me, the most debilitating and frustrating part of my disability is the daily fatigue and impact on my respiratory health.
As the saying goes, ‘health is wealth’.
Living with Chronic Illness
It can be incredibly difficult to remain optimistic when living with a progressive condition and chronic illness.
This past month has been tough!
Following three decades of cancelled plans, missed opportunities, and life on pause, here are a few things I’ve learnt:
1. Never make decisions when at your lowest.
2. Try not to withdraw or push people away. Knowing I’m unable to commit to plans, it can be easier to distance myself from people to avoid letting them down.
3. Reach out to loved ones.
4. Find joy in simple things.
5. Don’t waste valuable time, energy and effort on that which doesn’t serve you.
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.
A selfie, taken on 24th October – the day I caught Covid-19
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.
Flowers from friends
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.
“Thinking of you” flowers
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.
My constant companion
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.
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
– Pregnant
– Weakened immune system
– Certain medical conditions e.g. asthma, COPD, diabetes, heart disease, neurological disease
– Carers
– 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 +
Flu Facts:
– 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.
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.
The dark nights are drawing in and the weather is turning increasingly colder. The harshness of winter fills many disabled people, myself included, with dread.
How can we best prepare ourselves for winter?
We are 80% more likely to catch a cold during winter.
Bearing that in mind, here are my top tips to stay well and defend yourself against those nasty winter viruses.
Click here for Part 1 ~ Top Tips to Keep Warm through Winter!
1. Stock up on supplies: Medication –
• It’s always advisable to keep a stock of essential supplies in your home. Several factors, including adverse weather, can prevent you from getting hold of medicines at short notice.
• All my medications are on repeat prescription so that I don’t have the bother of getting hold of a GP every time I need something.
• As someone with Ullrich congenital muscular dystrophy, a common cold for me can develop scarily quickly, and so I ensure there’s always a reserve of antibiotics at home, should I need them.
• It’s important to go and get your Flu jab annually and, where relevant, the pneumonia vaccination. Don’t leave it too late to protect yourself from influenza – it takes two weeks from the time you’re injected for your body to build up an immunity.
Contacts –
• It’s good practice to have a list of contacts, in case of an emergency. Include medical professionals (e.g. doctors, consultants, physiotherapists and hospital ward/department direct lines) so that you or your next of kin can contact, should you become ill. Keep your list somewhere easy to find, such as on the fridge, and make copies!
2. Nutrition:
• I choose to take supplements including a daily multivitamin and probiotics, in order to boost my immunity. Supplements come in various forms: tablet, capsule, liquid and powder. If you struggle to swallow pills, there’s always another option out there for you.
• I’m not a fan of water, so I drink a lot of herbal teas, such as lemon and ginger, to keep me hydrated and flush out toxins. Both ingredients are naturally antibacterial while ginger also helps ease migraines, inflammation and nausea (the latter being a common side effect of antibiotics). Add some honey for sweetness and to soothe a sore throat.
• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!
• Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.
3. Cleanliness:
• I keep a little bottle of antibacterial hand gel in my bag (you can buy them really cheaply from most shops nowadays). I use it when out and about or using public transport. It’s a simple way to prevent the spread of germs from surfaces and person to person.
• It’s stating the obvious but wash hands with soapy water and maintain clean surfaces within the home. It’s often difficult to prevent all members of a household becoming ill when one gets sick. But simple precautions such as this could make all the difference.
• Grab yourself a few packets of antibacterial wipes and remember to clean phones, remote controls, computer keyboards and door handles regularly. You’d be amazed how much bacteria harbours there.
• Be considerate and try to cough and sneeze into a tissue rather than the air. It’s a good idea to keep plenty of tissues in stock. Please don’t do what my Dad does and carry a snotty cotton handkerchief around with you all day – bleurgh!
• Replace your toothbrush after you have fully recovered from an illness.
4. Physiotherapy:
• It’s beneficial to stay as active as physically possible, particularly throughout winter as immobility makes us more vulnerable to infection.
• I am completely non-ambulant and so this is a major issue for me. Immobility results in muscle decline and poor circulation, which in itself leads to further complications.
• Although I cannot exercise in a conventional fashion, I basically wriggle and move about as much as I can. For example, I flex my feet & wiggle my toes, lean back and forth and side to side in my chair. Don’t be afraid to put some music on, loosen up and just MOVE however you can, for as long as you can.
• If you are able, go swimming as this is the best exercise for those with physical disabilities.
• Remember to pay attention to your lungs! Deep breathing exercises are an essential daily requirement for me. Following the Active Cycle of Breathing Techniques (ACBT) helps to keep me as strong as I can be.
5. Avoid Germs:
• I am particularly susceptible to respiratory viruses. If I go anywhere near someone with a cold, 9/10 I will catch it. For me, a common cold can quickly progress into a much more serious condition, I do my best to limit exposure to infected people.
• I avoid overcrowded spaces and public transport when I’m feeling run-down, whilst taking and shortly after a course of antibiotics as this is when my defences are the lowest.
• At times when coughs/colds are prevalent within the local community, I try to stay away from enclosed public places e.g. trains, buses, cinema, supermarket/stores, pubs, clubs etc.
• If you must go out, remain in the fresh, open air (but wrap up warm).
• Wear a scarf when out and about. When necessary, I can use it almost like a mask, pulling it up over my face. This prevents me from inhaling and contracting airborne viruses.
• Why not add a few drops of Olbas Oil (eucalyptus) to your scarf. That way, when you do need to pull it up over your nose and mouth, you can breathe in the fresh scent and it won’t feel stuffy.
I really hope this was helpful! Please SHARE this blog post so that others may benefit.
I’d love to hear from you – what do you do to stay well throughout winter?
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.
Contacts –
• I find smoothies and soups are an easy way to get your recommended allowance of vitamins and minerals. It’s really important to eat healthily to aid your bodies defence against all those coughs and colds circulating throughout the winter months. Remember: you are what you eat!
• Top Foods: lemon, ginger, garlic, onion, kale, cinnamon, turmeric, honey, apple cider vinegar, grapes, natural yoghurt and chicken soup.
