Disability & Chronic Illness | Experiencing More Joy

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…

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Don’t Try To Ignore Or Suppress Your Feelings

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.

Becoming your own best friend will enable you to always feel comfortable in your own company and never feel the need to escape from yourself.

Join A Support Group

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.

Eat Well

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.

You Got A Friend In Me: The Importance Of Social Connections For The Chronically Ill

Isolation and loneliness are issues affecting many people living with chronic illness. You may live in central London, surrounding by people and yet still feel completely alone and separate from the outside world. Anxiety, depression and other mental health conditions, along with physical limitations can make it incredibly challenging to leave home. However, social interaction and the opportunity to form meaningful relationships is something we all need.

Read on to find out why and how to nurture more of this in your life, no matter what physical and mental health issues you are facing.

Companionship

Even those of us who enjoy our own company and identify as introverts, experience a sense of loneliness from time to time. Ultimately, we all benefit from and appreciate the bonds of friendship, family and loved ones with whom we can connect, interact and share our lives.

Life with chronic illness can be isolating for a number of reasons. It is difficult, sometimes impossible to be spontaneous and free. As a consequence, one’s social life is often impacted. You end up missing out on events, occasions and turning down invitations even though you may not want to. Furthermore, it can be hard for other people, who have no knowledge or experience with chronic illness, to understand what you are going through and why you are unable to involve yourself as fully as you’d like to.

It is therefore useful to find a real-life group or an online forum that is focused on the specific condition(s) you live with. This will help provide support and information, enabling you to better manage your issues, whilst also connecting you with others in a similar position.

Support

Of course, it’s not just companionship that makes social connection vital to those suffering from chronic conditions. Many of us need other people in our lives to support us directly with day-to-day activities.

This takes many different forms – from employed support workers to help with personal tasks like washing, dressing and feeding, to family members who voluntarily play their part. Others in your life may take on a less direct, but still supportive role in helping out with childcare, for example. They might even assist financially, by offering to be a guarantor should you need a loan. Find out who can be a guarantor by clicking on the link.  This option is worthy of consideration, especially if you are unable to work full-time because of your condition.

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Perspective

Finally, personal relationships and social connections are so important because they give us perspective. After all, it is often all too easy to fall into a negative thinking pattern when you have a chronic illness. But interacting with as many people as possible, both in real life and via social media, will offer comfort, companionship and the realisation that we are not alone in feeling low, frustrated and isolated.

In addition, pursuing social connections in this way can present us with the rewarding and mutually beneficial opportunity to reach out to help other people. Something that can help tip the balance from feeling like we are a passive sufferer, to someone who is making a valuable contribution to society.

Working Through Chronic Pain

Working full time is the goal for most of us – to earn our own money, pay the bills, put our skills and knowledge to good use, in addition to contributing to society. But for those who deal with chronic pain each and every day, this is not so easy to achieve.


Living with chronic pain can be debilitating, difficult to manage, incredibly stressful and for some it is sadly all-consuming. It is hard to focus on anything other than how you feel, thereby potentially affecting your personal and professional life, as well as your mental health and wellbeing.

No one wants to be out of work due to ill health. Aside from the obvious financial gain; work provides a purpose, opportunities to socialise, integrate with peers and further your own personal development.

Whether you commute or work from home, it’s important to find the method of pain management that suits you. Chronic pain can manifest in many ways, and as such there are several forms of treatment including medication, heat pads and even CBD oil.

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How to work through the pain:

Begin your day with strength and positivity: Try listening to motivational podcasts before bed or first thing in the morning. This will aid your mental health and encourage determination and perseverance to help you make it through the day.

Set the alarm: Seems obvious, right? But in all seriousness, this is an important step. An alarm will provide that extra nudge to get you out of bed. Position the alarm out of reach so that you’re unable to hit the snooze button or knock it over in frustration.
The earlier you start the day, the more time you have to prepare yourself physically and mentally. Rushing around will only add extra stress and inevitably exacerbate your chronic condition.

Learn to stretch: You might stretching is a bad idea for anyone living with chronic pain. However, in consultation with doctors and specialists, it can be of great benefit to devise a plan to stretch and exercise each day.
Stay as mobile and active as possible, but be sure to reserve energy and rest when necessary. Don’t force yourself to work through unbearable pain. This is counter-productive.

Comfort: Pay attention to your working environment – introduce furnishings and features for optimum comfort. Think about seating, cushions, footrests/stools and massagers.
Consider consulting an occupational therapist who will help to make your working life as easy as possible. If that means adding eight cushions of varying
firmness to your office chair, then do it!


Planning and preparation will result in good performance at work, despite constant chronic pain. Of course, it is sadly the case that many sufferers will never be completely rid of pain. But in order to work, and to work to the best of your ability, you need to formulate an individually tailored method of management. There is no ‘one fits all’ solution.

Disability & Identity

I was recently invited to participate in a Quality of Life Study, conducted by students at Sheffield University. The ‘Living Life to the Fullest’ research project is aimed at young people (18-30) with life-limiting or life-threatening impairments.

Although data provided by participants is anonymous, I thought the questions asked, along with my personal perspective, might be of interest to some of you.

Below is an extract from my interview. I’d be really interested to know your views and how you might answer…


Do you think the general public hold an accurate understanding of disability? Why or why not?

No, I don’t. I think people who have never had any particular connection or interaction with disabled people lack the knowledge, experience and empathy required to hold an accurate understanding of disability. Furthermore, I think there’s a lack of awareness of how diverse disability is and how many people it actually affects.

I also think people’s perceptions of disability are heavily influenced by the depictions they see in the media. Depictions of disabled people played by able-bodied actors can be very misleading for various reasons. Quite often these portrayals are ‘airbrushed’ and sentimentalized.

The next topic is about your relationship with yourself. Do you have a strong sense of identity? What factors contribute to your identity?

I’m really not sure to be honest. I guess that implies that I don’t have a strong sense of identity. I’ve never really given this question much thought.

I’m not a fan of labelling or categorizing people. At the end of the day, we are all very different, unique individuals.

I guess, in the simplest terms, I am a daughter, a sister, an auntie and a friend. Despite the fact that I often blog about certain aspects of my life, I am actually a very private person who prefers to remain anonymous (or at least, as anonymous as possible).

I identify as somewhat of an introvert. I am incredibly insecure and self-conscious (painfully so) due to my physical disability and the presence of my powered wheelchair. I do feel like people look at the chair before they see me.

I’m very much aware of how different I look compared to ‘normal’ able-bodied people, and how others view and perceive me because of this. I think, because I am so lacking in confidence, my sense of self and identity is negatively impacted.

I am much better at thinking, talking about and dealing with other people and their problems versus my own!

Do you identify as disabled? Has this changed over time?

Yes, I do identify as disabled, though my disability does not define me as a person. I have no problem with the term, nor being referring to as a disabled person. It is simply a matter of fact. In the same way I would describe myself as a white, British female, I am also physically disabled.

I have Ullrich congenital muscular dystrophy. There is no hiding or escaping from it, therefore I choose to accept and embrace it.

Since I began blogging, I have noticed a lot of discussion, within the disabled community, regarding the topics of terminology and semantics. There are those who take offence at being identified as, or even labelled ‘disabled’. Some may prefer terms such as ‘differently abled’. (Personally, I find this descriptor a little ridiculous and would never refer to myself as ‘differently abled’). Then again, there are those who don’t consider their impairment to be a notable part of their identity at all.

My view on this has remained consistent throughout my life. My condition is congenital, meaning that I have lived with it from birth and have always been aware of it. I am disabled. In all honesty, I really wish I wasn’t! But the fact is, I am. To me, there’s really no point in denying or ignoring this part of my identity.

You’ve mentioned your thoughts around how others perceive you and how you therefore perceive yourself. Does how you think others perceive you (or even how you perceive yourself) change depending upon context (e.g. at work; with family; with friends)?

I think the way others perceive me varies depending on context. If I’m out and about amongst the general public – for example, shopping with friends – I do notice looks and stares from strangers. It can be bothersome. Some people are so indiscreet and don’t think twice about glaring!

Complete strangers have approached me in the street, clearly feeling entitled to pass judgement and make offensive and inappropriate comments regarding my disability. For instance, a man once asked if I believe in God. Put on the spot (and obviously quite shocked) I hastily answered, ‘no’. He then told me that is the reason I am in a wheelchair!

However, for the most part, I don’t take offence at people looking or staring, so long as they are respectful. I appreciate that by nature, people are inquisitive. All of us, myself included, are curious about anything considered different or not the norm. For this reason, I will happily answer disability-related questions from people who are polite and considerate.

I can’t speak on their behalf but in general, I think (or assume) my family don’t even see my disability. I’m just Carrie. The only time it really smacks them in the face (so to speak) is when I get ill.

In terms of how I perceive myself, I think this is fairly consistent regardless of context. I am very self-deprecating and self-critical. Essentially, I have always wanted to fit in, especially during my school years. I want to be able to do all the things able-bodied people can. I want to be independent, to drive, to walk, to run, to be spontaneous and do things without having to plan or rely on others.

This research project is about young people with ‘life-limiting’ or ‘life-threatening’ impairments ( LL/LTIs), the next questions surround living with that.
What does ‘life-limiting’ mean to you?

I consider myself to have a life-limiting condition (Ullrich congenital muscular dystrophy). I have come to terms with the fact that my disability will inevitably impact how long I live. Although people with the same condition are now living longer thanks to various treatments and medical intervention, life expectancy is still much shorter than the average person.

I dread winter and all the viruses circulating throughout the community. Every time I get a cold it leads to a chest infection. For me this is very serious since it often develops into a more complex issue. Many times over the years, I have been admitted to hospital with respiratory complaints including pneumonia, pneumothorax (collapsed lung) and pleurisy.

*I did elaborate further during my interview, though for personal reasons, I have chosen not to include the rest of my answer here.

Does this impact any decisions you make?

YES! All of my decisions. I had a particularly bad bout of pneumonia in 2013. It took many months for me to recover and was incredibly difficult to overcome, both physically and mentally. At that point, my priorities changed.

Up until then I had been pursuing my aims of moving out of my parental home, and finding employment….but after realising how fragile my body actually is, I decided to end the lengthy quest for accommodation – an incredibly stressful quest that I had been struggling with for over two years, without assistance!

My primary focus now is health and happiness. I have to do what is best to protect and care for my body.

*I have chosen to remove parts of my original answer to this question.

Do you feel like it is important to set goals? And does anything stop you from doing this? Are your goals are shaped by what support is assumed to be/not be available or by the support you currently receive?

My mother keeps encouraging me to set goals, like aiming for at least one holiday per year. She wants me to make the most out of the time I have – however long or short – which I understand and agree with.

In August 2017, my first nephew was born. This has been the biggest motivation for me to keep going – to pursue good health, happiness and to embrace life!

I am so much happier since he was born – everyone has noticed. I often say, I hope to live long enough to see him grow up. I want most of all for him to remember me. So this is my biggest goal.

This question is rather pertinent as I currently have only one part-time PCA (personal care assistant). She is very young and hates driving my wheelchair accessible vehicle. As a result, I feel very isolated and excluded from society. I would like to be able to get out, to meet friends and go to events. But right now I am unable to, as I don’t have the support in place.

You have talked about not being able to get out of the house. Would you say you ever feel lonely or that you miss out because of your disability?
Do you miss out more because of your own health problems or accessibility issues?

Yes, definitely. There are times I feel lonely even though I am by nature quite a solitary person. I am more than happy with my own company – it’s a good job, really!

I’m not a fan of social media at all. But like it or not, for me it is a lifeline. Without it, I would feel incredibly isolated. I mostly use Facebook Messenger in order to stay in touch with friends and to meet others in a similar position to myself.

Health problems as well as accessibility issues contribute to missed opportunities. So many times I have made plans, then had to cancel due to ill health – usually chest infections. Because of this, I am now very reluctant to make future plans for fear of disappointment.

For example, I finally managed to book tickets for the Strictly Come Dancing, January 2017 tour. I was so excited and had looked forward to it for months. I then caught a severe chest infection and was unable to go. It may sound dramatic but I was gutted. I had tried to get tickets for years but couldn’t, as the limited accessible seating was always sold out.

What worries you about your future with a complex condition? What would you say is your biggest worry?

I worry most about my health and my ability to fight respiratory illness. As a kid, when I got a chest infection I would need a course of antibiotics and a week off school to recover. However, as I have aged, the duration of these illnesses has gradually increased. They have become much more complex to treat too. These days, it takes everything I have to overcome a chest infection. I worry about how many more times I am able to do it and therefore what I might miss out on in life.

How has your family been impacted (for better or worse) by your disability? For example, has it affected them financially or affected your relationships with them? How do you feel about this?

Wow – there is no end to how much my family has been impacted by my disability!

Yes, very much financially. For one thing, I have a ground-floor bedroom/bathroom extension that was built in 2000. Back then, my parents’ income was assessed. They were entitled to a partial grant, though this was a very small sum. In order to fund the build, they had to take out a second mortgage.

Holidays are MUCH more expensive than they would be for the average family. Medical insurance and the need for accessible accommodation, plus equipment hire makes vacationing rather costly.

Essential mobility equipment such as manual and powered wheelchairs are a huge expense!

Furthermore, my parents are affected physically (owing to many years of lifting and manual handling) and emotionally. Obviously they are aware of the fact that my condition is life-limiting, even though this is not discussed. When I am hospitalised, my whole family experience a great deal of distress.

Relationships are inevitably affected. At the age of 29, I still live with my parents in their home, and we are very much in each others pockets. They remain my primary source of support. I am unable to escape when disputes occur – to go for a walk or a drive in order to ease tension and let off steam. This I find incredibly frustrating.

What makes for a good community in regards to disability?

I’m really not sure how to answer this question. Sadly, I don’t think this can ever be fully achieved, as there will always be prejudice, ignorance and exclusion. I think crucially, there needs to be greater awareness, familiarity and education so that disability becomes part of the norm. We need to work in unity to break down barriers and make disability socially acceptable.

How do you feel about dating with a disability? Do you think it is harder when you’re disabled?

It is definitely harder with a disability – or so I have found. I think one of the biggest obstacles is the initial meet and greet stage.

We (disabled people) face assumptions, social prejudice and environmental limitations e.g. Access to buildings and public transport – thus making dating all the more challenging. Then there are our own physical limitations.

I am completely non-ambulant, I have contractures, a severe scoliosis and overall muscle degeneration. These physical limitations have made me overtly self-conscious, socially awkward and anxious when meeting new people.


Thanks for reading! If you found this interesting, leave a comment and share so that others can join in the discussion.

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Life Update | Hospital Admissions & Disability

Thursday 8th March marked International Women’s Day 2018. For me, it was spent in hospital (Russells Hall, Dudley) undergoing minor surgery. Could be worse, I suppose!

Due to the fact I have Ullrich congenital muscular dystrophy (a muscle-wasting condition), people are often horrified when I tell them how many general anaesthetics I’ve endured throughout my life (at least 10 – honestly, I’ve lost count!).

Although it is obviously best avoided, I’ve personally never encountered any problems or complications as a result of general anaesthesia.

I’m a big believer in knowing your own body and what you, as an individual, are able to withstand. When undergoing any form of surgery, communication is key – particularly when you have a disability.


A Few Tips:

Go prepared: Take all relevant documentation to your pre-operative assessment(s), including names and contacts for all the medical professionals you see regularly.

Meet with your surgeon(s) and anaesthetist: It is not always common practice to see your anaesthetist prior to surgery, but in my case it is essential. Explain your specific requirements and concerns, and don’t be afraid to ask questions.

Ensure everything is in place prior to your admission date: If, for example, you use a Bi-pap or C-pap machine (non-invasive ventilation), tell your medical team – nurses included. Make sure they know your settings and have your NIV machine ready for you to use post-operative.


I usually discharge myself on the day of surgery or, as soon as I know I’m well enough to manage at home (again, I hear you gasp). Anyone with a disability who has spent time as an inpatient will appreciate why I prefer to escape as soon as physically possible.

Don’t get me wrong – I cannot fault the care and conscientiousness of the doctors and nurses. I am a big supporter of the NHS and frankly, I would not be here today without it.

However, the sad fact is, hospitals in the UK are not equipped for those of us with disabilities and complex care needs. Trust me – having been admitted many times, to various hospitals, for various reasons – I am well versed!

On this particular occasion, it was necessary for me to stay in hospital overnight. My Mom was with me all day but went home at around 7pm when it became apparent that I was unfit to leave. This essentially left me alone and stranded in bed (one that didn’t work!), unable to move, reach or sit myself up.

I couldn’t and wouldn’t expect Mom to stay with me all night, in order to assist with my physical care needs. She herself has recently had a full knee replacement and was exhausted.

After a long, uncomfortable night spent clock-watching, I was incredibly relieved when my folks returned at 11am on Friday to take me home. My home is set up for my care needs. Unfortunately, hospitals are not.


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The winter edit: Part 2

5 tips to stay well through winter

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. So how can we best prepare ourselves for the months ahead?

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 to check out ‘Part 1’, in which I offer my tips to keep warm.


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 if kin can contact them quickly 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. So 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 particularly when out and about or using public transport. It’s a simple way to prevent the spread of germs from surface to surface and person to person.
• It’s stating the obvious but do 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!
• Finally, don’t forget to 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. As a common cold for me 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).
• I always 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! If so, please share this blog post so that others can benefit too.

I’d love to hear from you – what do you do to stay well throughout winter?

Lost time

I’m back- finally! As you may know I was struck down with a particularly bad lower respiratory infection during the New Year period, and was consequently ill for over a month. Until a few days ago I was unable to leave my home throughout that time. So unfortunately, 2017 has not begun how I had hoped or expected.

Anyone with muscular dystrophy will know a cold is never just a cold for us. I dread the British winters and the circulation of unavoidable viruses it brings. For me, sneezing and a sore throat inevitably and rapidly develops into a full-blown chest infection. Bring on the 24/7 NIV (non-invasive ventilator), regular nebulisation, antibiotics and inhalers.

At times I’ve had no choice but to admit defeat and blue-light it to hospital. But stubborn as I am, if I think I can cope with the resources I have within my home, that is where I choose to remain.

I have noticed over the past few years the duration of my illnesses have become increasingly prolonged. I missed the entire summer of 2015 to a chest infection which lead to pleurisy. From the end of May to the end of July, I was stuck in my living-room, sat in the armchair night and day with my trusty vent keeping me going. Several GPs and physiotherapists attended but despite their best efforts, none could offer any productive help or advice – nothing I wasn’t doing or didn’t already know.

I was exhausted mentally and physically, but despite my ongoing struggle I couldn’t help but feel guilty for putting my parents, whom I live with, through the experience. They have no choice but to watch helplessly and with desperation as their youngest child battles with her failing body. “What can I do?”, they ask. But there’s nothing they can do. I always tell them I’ll be fine, it’s just a matter of time.

Having thoroughly depressed you with that cheery and fairly pointless update, I’ll bring this particular post to a close. Now finally on the mend, I intend to resume where I left off with the blogging. ‘Oh goodie!’, I sense you cry with enthusiasm. I realise I’m more than likely rambling away to myself here but writing serves to make me feel purposeful, perhaps even contributory in some way.

January has for me been lost forever and I can’t get that time back. It’s so frustrating being unable to do… anything! Even just going out for a ride in the car is a major highlight for me right now. When all you see day after day is the same four walls from the same seat in the corner of the room, cabin fever soon sets in.

Today, seeing the first daffodils of spring starting to emerge filled me with much needed optimism. There will doubtless be future episodes of ill health to contend with. But for now I plan to recharge, re-energise and refuel. Bring it on!

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.