I’ve read many trivial complaints on social media about the Coronaviruslockdown.
From park, pub and salon closures, postponed gigs and concerts, to cancelled botox, filler and wax appointments. Some are even moaning because they can’t race around and show off in their flashy cars. What a shame!
I appreciate we all have our own interests, outlets, coping mechanisms and methods of self-care. We all want to look and feel our best, and we all need somewhere to escape to.
But please, let’s try and keep things in perspective.
The current situation isn’t permanent. Of course, it’s tedious, stressful and frustrating, and will impact some considerably more than others. But it will pass and “normal” life will resume.
People on the frontline are literally risking their lives to help others – complete strangers. They are physically and mentally exhausted, yet keep going.
Carers continue to support the most vulnerable in society, despite the risk.
Key workers carry on working to ensure society functions and people are provided for.
On the upside, lockdown provides an opportunity for families to unite, spend quality time together and talk more.
But for others – men, women and children – being stuck in close proximity, unable to escape, can be a living hell.
The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since lockdown began!
We all have problems and we are all entitled to feel and express what we need to in order to get through these trying times. Your experiences and frustrations are valid.
But please, keep in mind the medics, carers, key workers, the elderly, disabled, those living with domestic abusers and those separated from their loved ones.
Try to appreciate what you do have – for example, your health, home, and hope for the future.
When you’re feeling low, maybe write a list of all the positive things in your life and focus on that rather than the things you are currently missing out on.
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.
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.
Show your thanks and appreciation for the NHS and those working in health and social care.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
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.
~ 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.
• 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. 💪
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:
• Respiratory physio
• 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.
Resource Allocation: A classic medical ethics topic that often rears its head in the inevitable reality of working in a cash-strapped public healthcare system.
Should the NHS fund this new expensive treatment for a rare disease?
Should the government pay for a new experimental cancer treatments?
Should X procedure be on the NHS, or Y?
The list is endless.
This blog covers a few basic ideas and concepts for you to broaden your understanding of why things are done as they are, enhance your opinion and help you think of the bigger picture.
One way of analysing resource allocation is using a utilitarian approach. Utilitarianism describes the moral theory that the most moral action is that which maximises the happiness (or in this instance healthiness) of a population. This seems quite a nice logical and fair systematic approach, but has one major drawback.
How do you quantify the benefits gained from a specific treatment?
Fortunately, Alan Williams, a health economist calculated a measure for doing this – the Quality Adjusted Life Year. This system described not only the length of life a specific treatment can give a patient, but also factors in the subjective quality of that life.
Interestingly, some of the ‘best’ treatments by this system including cataract surgery and hip replacements, owing the massive improvement in life these can bring (even though they are rarely viewed as life extending). However, despite quantifying the ‘best value’ treatments, this system still has its drawbacks.
Firstly, many argue that this system ignores both the old, and the chronically ill. The old will have fewer ‘life years’ per treatment and the chronically ill will have a lower ‘quality of life’ per treatment by this system, and will thus lose priority in this system.
This a great concept to think about as many new drugs are for specific diseases, which are often rare and chronic, or those which affect the elderly. Secondly, ‘quality of life’ is a highly subjective term, and, although this system goes someway to quantify it, the end result is still a subjective rating score.
Another way of analysing these topics are through an egalitarian approach. This theory states that resources should be distributed equality unless an unequal distribution would work to everyone’s advantage. However, in reality, there is not unlimited funding and therefore equality of distribution means that expensive treatments (the new drugs often featuring questions) could not justifiably be funded.
This approach does promote a decent minimum standard of care (good for everyone) and some argue that more expensive treatments can be funded elsewhere. For example, charities and private companies could find a place in an egalitarian healthcare system to fund more niche treatments.
Another viewpoint worth nothing (though one which many, especially in the UK, would be against) is that of libertarianism. This system states that healthcare should follow individual liberties and free market principles – i.e to be privatised. This is an interesting viewpoint to discuss, but, given the many drawback of private healthcare and the NHS in the UK, it’s not one we in the UK really consider.
So, there we have it, a few basic approaches to the classic question of ‘should we fund this expensive new drug’.
This guest blog post is provided courtesy of writer Adi Sen, from the website UniAdmissions.
Disclaimer: The views and opinions expressed in this article are those of the author (UniAdmissions), and do not necessarily reflect the official policy or position of myself or any other organisation.
Today I bring you another guest post from Michael Leavy, Managing Director of Home Healthcare Adaptations, a family-run company that specialises in adapting homes for the elderly and less abled.
Michael kindly provided a previous guest post, (How Seniors Can Feel More Secure At Home), which you can view here.
Infographic | How to prevent hypothermia in older people
The risk of hypothermia is at its highest during the winter months. That risk is even greater for elderly people, as their lower metabolic rate makes it harder for their bodies to retain an ideal temperature. Also, they might not detect extreme cold as readily as others, and could have chronic medical conditions which would exacerbate the onset of hypothermia.
If you see signs of hypothermia in an elderly relative, keep them as warm as possible. If the situation seems serious, call NHS 111 for expert advice and guidance.
The infographic below from Home Healthcare Adaptations explains what to do if you think someone is experiencing hypothermia, along with preventative measures they can take to reduce the likelihood of hypothermia.
The harsh winter months affect a high population of the UK with a spate of Flu and other seasonal illnesses. But for the elderly and immobile, freezing conditions can lead to far more serious conditions requiring hospitalisation.
Elderly people are generally at greater risk of hypothermia than most others for several reasons. Their lower metabolic rate makes it harder for their bodies to regulate temperature in cold weather, while the presence of chronic health conditions reduces their immunity to hypothermia. Also, a deterioration in the senses could make it more difficult for an elderly person to detect decreases in temperature, hence they might not take immediate preventative action.
If you have elderly/immobile relatives or neighbours, check in on them throughout the colder months to ensure they aren’t showing any warning signs of hypothermia.
Symptoms of hypothermia include:
A rapid deterioration in physical appearance.
Extreme shivering or an occurrence of sudden, inexplicable body movements.
If you notice any of these in an elderly person during cold weather, call 999 straight away and, while waiting for the emergency services to arrive, move them to a warm place and wrap them in a warm blanket or coat.
Don’t put them in a warm bath or give them an alcoholic or caffeinated beverage!
While I’ve been writing and contributing to various other projects, my blog has taken a backseat over the past few months. In all honesty, I’ve recently lacked all motivation and interest to write any blog posts.
I realise many bloggers feel this way from time to time – going through periods of having lots of ideas and enthusiasm, followed by weeks or even months of non-productivity.
I don’t want to go into the reasons for my lack of motivation. Suffice to say, I’ve had other things on my mind. This has resulted in fluctuations in mood, poor focus, zero energy, and insomnia.
For the most part, I’m happy and content with life as it is. Don’t get me wrong, it is far from ideal and there are things I wish were different – things beyond my control. But this is the case for most of us, right?
My point is, sometimes we need to take a break, de-stress and re-evaluate before moving forward. Inevitably, we all experience stress at some point in our lives, and we each have our own methods of dealing with it.
Here are a few of my coping mechanisms:
1. Music therapy ~
Music is a big part of my life and not a day goes by that I don’t listen to some form of music. Most of the time, I can be found wearing earphones. As soon as I have the house to myself, the first thing I do is put music on. I also listen to it every night before bed. If nothing else, it serves as a distraction and helps to prevent overthinking (something I’ll confess, I do a lot).
(Above: YouTube video of the John Lewis TV advert, featuring a little girl dancing carelessly around the house to the song, Tiny Dancer by Elton John. This basically represents me when home alone!)
There are songs appropriate for every mood and occasion. Music has the power to stir emotions, to inspire, to energize, cheer us up, remind us of past events and people. I think I’d go crazy without it!
Nothing cheers me up more than babysitting my gorgeous baby nephew, who is almost 15 months old. That kid is truly the love of my life! I may be irritable and in the worst mood, but as soon as I see that little face, everything seems okay.
He’s now at the stage where lots of babbling, climbing (of my wheelchair!) and toddling is taking place. His expressions crack me up, and the way he flashes a beaming smile and puts his arms out for cuddles just melts my heart. On a bad day, there’s nothing better (in my opinion) than taking baby G for a ride on my lap while he beeps the horn again and again and again…
3. Alone time ~
Innately, I am a bit of a loner. I’m not a people person and am quite at ease in my own company. Of course, I enjoy being around those I love and care for. But I also need my own space to just…be! If I’m with lots of people for long periods of time, I reach a point where I need to escape and be on my own for peace of mind.
4. Get out the house ~
Another form of escape. Being stuck at home day after day (as is often the case for many disabled people) sends me stir crazy. Simply getting outdoors can be a huge relief. Sometimes I don’t want or need to go anywhere in particular. It just helps to get in the car and drive around country lanes to get some fresh air and perspective.
5. Avoid social media ~
It’s no secret to those who know me best that I’m no fan. Yes, it serves its purpose and I am fortunate to have met some great friends via social media. For me, this is really the only reason I persevere with it! But again, sometimes I feel the benefit to my state of mind when switching off and abandoning social media, if only for a few days.
This can be difficult as a blogger! But long ago, I promised I would never let myself become the type of person who never looks up from their mobile phone. Even now, I see people tapping away incessantly, unable to tear themselves away from their smartphone, and I wonder what they find to do.
Showing my age now, but I do miss the days before mobile phones were common place; when people actually stopped, looked around, appreciated their surroundings, lived for the moment and spoke to people.
Experiencing more joy might seem a long way off to you, or even impossible to achieve. However, you can improve your happiness simply by adapting your everyday activities, habits and way of thinking. It may sound harsh but it’s important you first choose to stop being a victim of circumstance and start being the hero of your own life!
This is your own unique journey, and you can still make it positive and fulfilling if you are determined enough. Below we have some ideas for finding joy in your everyday life, no matter what your disability, illness or condition. Take a look…
First thing’s first: you should not suppress or ignore your true feelings when you begin to feel them.
Inflicting self-judgement and criticism will only have a negative impact. However, this is not to say you should force yourself to feel positive all the time – this just isn’t realistic. We all get down and feel lost and hopeless from time-to-time. Allow yourself time to grieve for whatever or whoever you have lost throughout your life.
Healing Is Not Linear
Healing does not happen in a straight line – it isn’t linear or consistent. One day you may feel great, and the next day you might feel worse than ever.
Write Daily Gratitude Lists
It is hugely beneficial to keep a physical record of all that you are grateful for. Try to get into a regular habit of doing this everyday. It will keep your mind focused and positively proactive.
You might be grateful for your job, friends, family, your home, health and so on. These are just a few ideas to get you started. Try to be specific and review how many different things you can come up with each time you write your gratitude list.
Setting Daily Goals
When you get up each morning, try to set an intention for your day. How do you want to feel today? Is there a specific task or chore you’d like to accomplish? Setting daily goals or intentions can help your day run smoother. As a result, you should find yourself making faster progress towards improving your mood and well-being.
Appreciate At Least Three People Every Day
Whether it’s your partner or a considerate stranger – nurture the important relationships in your life.
Are you appreciative of the people who perform your home care services?
Appreciate The Small Things
You don’t have to have lots of money, possessions and exciting things going on in your life to feel good about it. Appreciating the really small things is important too. Whether you’re reading a good book, chatting with a friend, enjoying a hot cup of coffee or simply watching your favourite TV show – find the enjoyment and fulfilment. The way you frame things in your mind has a lot to do with how happy you feel each day.
Learn To Love And Accept Yourself
Most people find this tough, let alone those with limitations who maybe struggle with things that others don’t. Learning to love and accept yourself will likely be one of the toughest things you set out to do, but it’ll be one of the most worthwhile and important. Don’t compare yourself to others, and find things that you really love and appreciate about yourself every day.
If you want to meet like minded people and share stories and advice, joining a support group could be a great idea. Check out support groups in your area and visit them to see how you feel.
Accept Help If You Need It
If you need help, please don’t be afraid to ask for it – it DOES NOT make you weak. Taking care of yourself and getting other people to help take care of you, whether mentally or physically, is nothing to be ashamed of – quite the opposite. It’s natural to want to maintain as much independence as possible. However, seeking appropriate help and support will allow you to do this for much longer.
Develop New Hobbies And Find Things That Make You Truly Happy
Developing new hobbies is a wonderful way to find happiness. Perhaps you could join a book club, learn to play an instrument, write poetry, paint, draw or do something else with your time – whatever you want to do, just give it a try!
Exercise In A Way That’s Possible For You
You may not be able to exercise much, if at all, but there are likely a few things you can do. Rolling your feet in a circle or moving your head from side to side, for example. Whatever physical activity that is within your limits, do it regularly.
Eating healthily will make you feel good from the inside out. Learn how to read and understand nutritional labels and aim to get plenty of vitamins and minerals into your diet.