Uncategorized – Page 8 – Disability & Lifestyle Blog

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.

Living Well | Making a property into an accessible home

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It’s fair to say that most of us dream of buying our own home, right? That first step on the property ladder is an exciting milestone in our lives. It is representative of independence, responsibility and yes, becoming a ‘real’ adult!

However, for many it can be a lengthy and stressful process. Finding a suitable property in the right location, and at an affordable price is not easy, particularly for today’s generation.

For those of us with a disability, the task is far greater. To some, being able to live independently in your own home, whether renting or buying, feels like an unreachable goal. If and when you’re able to find a property to suit your requirements, you then face the inevitable task of adapting it to ensure it’s fully accessible.

While this can be daunting and even off-putting, if you choose to take a positive perspective, it could be considered a fun, and thoroughly rewarding project.
Remember, you don’t necessarily need to wait for an accessible property to become available. Alternatively, why not find the home you love and adapt it so that it’s perfect for you.

1. Taking Your Time

Perhaps most importantly, don’t rush the process (tempting though this may be). Of course, we’re all impatient to leave the family nest and move into our own place. This is major undertaking (particularly for disabled people) and a great expense, therefore it needs to be done right. It may take months, it may take years! Believe me, I know how disheartening the waiting game can be. But is really is essential to take your time.

2. Consulting A Contractor

Once you have found a suitable property, where applicable, the next step is to consult contractors (ie. builders). If structural work is necessary, seek advice and obtain quotes from at least three builders. I would also advise checking out a range of accessible homes. This will provide information and inspiration, thereby enabling you to plan your new home effectively.

3. Estimating The Budget

Obviously, there is no point obtaining quotes and making calculations if you are unaware of your overall personal budget. It is imperative, from the start, that you establish an estimated budget, and that you stick to it. You could fund the adaptations using savings, your original house buying budget, or you may choose to investigate the option of long term loans. Either way, ensure you have a genuine estimated budget.

4. Making It Your Own

When modifications are required to make a home accessible, it will affect the physicality and aesthetic of the property. For example; ramps, wider doors, level access, hand rails, lifts, lowered units and ceiling track hoists – these are all very visible features. You may feel like you are having to forego style and character in favour of practicality – and it’s okay to feel that way. But regardless of the extent of the adaptations, you can always make your mark. With a little planning and creativity, you really can make an accessible property your own. Have fun with furnishing and decorating your new home.

5. Making Room For Your Things

Whilst working with professionals (occupational therapists, builders etc) who will help to adapt the property to your specific needs, you’ll also want to make sure there is room for your personal items and equipment. Make a list of everything you will need to store – from wheelchairs to hoists.
At the end of the day, thorough planning is key! Prepare, plan and be patient…

Inclusion in the Workplace: Improvements

While some progress is being made to accommodate disabled employees, there is still much more that could be done to help us to feel comfortable, confident and able to perform most effectively, at work.

This post highlights three crucial changes that need to take place to promote inclusivity within the workplace.

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1. Better help for those with hidden disabilities:

It is evident that wheelchair-users, like myself, need physical modifications such as accessible desks, ramps at entrances and exits, and lifts. But, due to a lack of information and awareness, those with hidden disabilities are still being denied access to the minor adaptations required to enable their working day.

For example, some people with debilitating anxiety conditions can find it incredibly difficult to work in an open-plan environment. Providing a private space or even desk screening can resolve this issue, thereby enabling optimum productivity. However, some businesses would rather maintain their open plan aesthetic than implement these simple adaptations in order to assist disabled employees.

2. Inclusive bonding activity and rewards:

There is currently a lot of focus on workforce team bonding activities, since this has been found to be a successful method of encouraging inclusion. However, many of these activities are physically demanding ie. assault courses and river rafting – totally unsuitable for wheelchair-users and those with physical disabilities.

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Of course, there are many more inclusive bonding activities, accessible to everyone regardless of ability. For instance, hosting a Weekly Quiz would unite team members whilst also providing a stimulating, competetive challenge. Then there are shared, adrenaline-fuelled experiences like skydiving, indoor skydiving and sailing. All of these sports cater for people with a diverse range of disabilities.

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Believe it or not, bonding activities can be tailored to the needs of the individual, and made more inclusive through various adaptations.

So-called ‘escape rooms’ are increasing in popularity. Players are locked in and must work together as a team, solving puzzles and riddles in order to escape before their allotted time is up! These ‘escape rooms’ are fun, exciting and can be easily adapted for those with disabilities.

If you are feeling particularly creative, you can following the guidance here and devise your own unique, inclusive bonding experience. This way, you can ensure it will be perfect for all involved.

3. The opportunity to prove ourselves, just like everyone else:

Though it should really go without saying; as disabled people, we want the opportunity to prove ourselves, just like everyone else.

We don’t want token gestures from employers. Disabled people are skilled, talented, capable and willing to work hard. We can offer a unique perspective and want to prove our value as employees. We want to be there because we have a genuine contribution to make, and we want to be taken seriously in what we say and do professionally.

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The important issue of workplace inclusion is something that requires immediate attention. Both employers and employees need clear access to information and education. Knowledge will promote confidence, which is essential for disabled people to access employment and for career progression.

The Beginners Guide: Coping with a Hidden Disability

Not all disabilities are visible. Right now, you could be sitting next to someone who is living with a form of significant impairment, and you would never know by appearances alone. Alternatively, you yourself may be one of many people with an invisible disability, trying to navigate the challenges of daily life.

Either way, it is both advisable and beneficial to gain an understanding of the coping mechanisms, and the ways in which people living with invisible disabilities overcome the obstacles of daily life.

Seeking help:

It is often the case that those with a hidden disability, disease or disorder do not seek the help and support they so desperately need.

If, for example, no one sees your need to repeatedly check the front door before leaving (OCD), or that you have to sleep for an entire day after a brief shopping trip (Chronic fatigue), or that you need a glass of vodka before leaving home (Alcoholism); a genuine disability can be easily dismissed as nothing important/serious. Thus you endure, often alone, and continue with life and the issues associated with invisible disabilities/disorders.

Though your condition is not visible, it will inevitably impact and affect your quality of life and, to an extent, the lives of those around you. Sadly, it isn’t something that will just go away on its own accord either. Therefore, it is vital to seek help and advice. Whether that is finding somewhere like the Ana Treatment Centres, visiting the doctor to be screened for a particular condition, or even contacting a charity to assist with acquiring an official diagnosis.

Telling friends and family:

Informing friends and family of your hidden disability/disorder/illness can be another major challenge to overcome. You may worry that you won’t be believed, or that your nearest and dearest think you are just being lazy or making it up. Furthermore, you may not wish to bother or burden them. Perhaps you feel too embarrassed or self-conscious to share and openly discuss such a vulnerable part of your identity with others.

Of course, the decision to let people in your life know about your condition needs to come from you. It is important to remember that it’s completely fine if you don’t want certain people to know. You will find though, as a general rule, those who truly care will take the time to find out more about your disability/disorder/illness, and support you in any way they can.

Boundaries and limits:

When it comes to invisible disabilities, the expectations of the outside world, and even your demands on yourself, can often be in direct contrast to what you are able to do. This isn’t to say you should self-impose limitations and restrictions.

There are many, many disabled people out there pushing boundaries and living exciting, adventurous and fulfilling lives!

Unfortunately, it is not uncommon for people to react with confusion or frustration when your hidden condition dictates that you cancel/change your plans at the last minute. In this situation, it is advisable to draw on all your self-confidence and establish personal boundaries rather than adapting to the demands of other people. Finally, try to avoid conforming to pressure and societal expectations.

A New Wheelchair

The Waiting Game

*Update* As you may (or may not) know, I am in need of a new powered wheelchair since my ageing Quantum 600 is rapidly falling to pieces (slight problem!) and no longer meets my needs.

The very long process of acquiring a new wheelchair began several months ago. I previously wrote two blog posts outlining my situation, requirements and the plan of action:

Part 1: My Search for a New Wheelchair

Part 2: Wheelchair Services

I received a NHS voucher from wheelchair services at a value of £1700. I’ll be honest, I was amazed to receive this much from them as I was expecting no more than a few hundred quid (if that), based on previous experiences.

£1700 is a lot of money for which I am grateful, but it’s only a fraction towards the cost of the Sunrise YOU-Q Luca wheelchair I now need. Even with basic seating, I have been quoted in excess of £7,000.

I applied to the Joseph Patrick Trust for a grant to help out – this could be (here’s hoping!) as much as £2,500. They are holding a review panel on 1st August and I will be notified of their decision within the next ten days.

So this is currently the stage I’m at in this looooong, slooooow process. There’s nothing more I can do until the JPT have held their review in August. The waiting continues…

You never know, I might get my new chair in time for Christmas! (Don’t mention Christmas. Yes, I know, I know – sorry folks).

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Going The Extra Mile for MDUK

On the weekend of 12th May, my amazing brother and his two friends took on The National Three Peaks Challenge. This involves climbing the three highest peaks of Scotland, England and Wales, within 24 hours.

The total walking distance is 23 miles (37km) and the total ascent is 3064 metres 6o(10,052ft). The total driving distance is 462 miles.

The three mountains are:

Snowdon, in Wales (1085m)
Scafell Pike, in England (978m)
Ben Nevis, in Scotland (1345m)

All of this is in aid of Muscular Dystrophy UK.

As you may already know, I have lived my entire life with a rare form of MD – Ullrich congenital muscular dystrophy. Having witnessed his little sister grow up with the effects of this muscle-wasting condition, my brother decided he wanted to do something – something big! – to help make a difference to the lives of others living with MD. That something is the National Three Peaks Challenge.

Report from my brother:

Friday 11th May: We drove ourselves from Worcestershire and stopped overnight at a place called Fort William in Scotland.

Saturday 12th May: The challenge began at 16:40 as we started to climb Ben Nevis, in sunny but very warm weather (a little too warm). We peaked in 2 hours 10 mins, reaching the snowy summit at 18:50. Visibility was perfect and gave us spectacular panoramic views of the other mountains in the area.

We then ran down to the car in a total of 3 hours 45 mins, before driving through the night to the hamlet of Wasdale Head in the Lake District, to start our climb up Scafell Pike.

Sunday 13th May: It was pitch black and rainy all the way up to the top (04:19), but the weather cleared on the way down and the Sun started to rise, making it easier to navigate. However, our descent took longer than we hoped due to extremely slippy rocks underfoot, combined with a lack of sleep.

View over Wast Water at first light during descent down Scafell Pike

Finally, we drove on to Pen-y-Pass in Snowdonia to begin our climb up Snowdon. The weather was perfect – sunny with very clear visibility. We took the Miners Track up to the summit (12:30) and then the Pyg Track back down.

The hardest part for me was the first 30 mins of our trek up Ben Nevis. It gets incredibly steep straight away and in the extreme heat I soon got jelly legs. But as we got closer to the summit, it cooled down and I was able to splash my face with cold water from the stream coming down the mountain.

Collectively, we all found the biggest challenge was to keep going despite the lack of sleep. It was hard to maintain enough energy and endurance to stay focused and not trip over!

Challenge completed at: 14:43 in 22 hours 3 mins

I would like to say a personal thank you to the best big brother anyone could ever wish for! We don’t do gushy at all, so he’s probably reading this wondering why I’m being so nice. Rob – you know how I feel. Loves you more x

To Adam & Dan – thank you both for being such good friends and for selflessly offering your time and efforts. It means more than you realise.

To anyone reading this, please share the link and if possible, make a donation to support the great work of Muscular Dystrophy UK:

https://www.justgiving.com/fundraising/3peaksformd

International Women’s Day 2018

Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.

It is held on 8th March, every year. Here are a few quotes that resonate with me…

What does International Women’s Day mean to you?

This post comes to you a little late, since I spent Thursday 8th March in hospital having an operation – fun, fun!

I’m now on the mend and planning future blog posts.

What topics would you like me to cover?

If you have any ideas or suggestions, I would be grateful if you would leave a comment.

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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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Wheelchair Services ♿

Following on from my last blog post, I’m happy to report that Friday’s appointment with wheelchair services (Wychbold, Droitwich) was surprisingly beneficial.

Admittedly, I had low expectations based on previous experiences. But the occupational therapist (OT) I met with was extremely helpful and conscientious.

I now have a long list of information and various options to consider.

I went prepared with some notes, outlining my needs.

Thus far, I have looked at various wheelchairs online and test drove the Quickie Salsa M2 Mini and the Quickie Jive M (both by Sunrise Medical). Sadly, neither of these chairs met my requirements.

The Salsa M2 Mini is an ideal size but not so great outdoors (compared to my current Quantum 600). The Jive M was just too big for my home.

Me in my current Quantum 600 powered wheelchair

Whilst at the appointment, I was shown the Invacare TDX. Before it was even measured, I could see it is far too big, more so than my current chair, and wouldn’t fit around my home.

So that’s one more crossed off the list!

Voucher vs NHS wheelchair?

The last time I approached wheelchair services was 10+ years ago. That appointment was brief and frankly a waste of time!

I was offered a voucher with a value of no more than a few hundred pounds. A lot of money you may think. But when you consider powered wheelchairs cost from £5000 upwards, (between £10-20k is more accurate), a few hundred quid doesn’t go far.

The only alternative to this was one, very basic, very inadequate NHS wheelchair – I suspect unsuitable for most people.

Thankfully since then, things seem to have improved greatly (around here, anyway).

My current options are:

– A voucher with a prescriptive value of approx £2000

– Accept one of the approved NHS chairs (none of which feature the rise function that I need)

– Accept a more compact mid-wheel drive (MWD) NHS chair for indoor use, and privately purchase a second wheelchair specifically for outdoor use (worth considering as I live rurally)

Right now I think my best bet is to take the voucher and choose my own wheelchair. Mainly because I do require both the rise and tilt functions. The NHS will only approve the latter.

What now?

– Attend NAIDEX (April 25-26th). I will be able to see many different wheelchairs and discuss my options with specialists. Trust me you need to see and try them before committing to anything. You can’t base a decision on images and information on a computer screen.

– Investigate options I had not previously heard of, including: Ottobock and the YOU-Q Luca by Sunrise Medical.

– Contact Sunrise Medical directly and ask them to visit my home with demo wheelchairs to view and test-drive.

– Ask Sunrise Medical for a list of reputable dealers.

Once again, I will keep you updated of any developments.

Thanks for reading!

Wheeling Through Life | A Brief History

From birth, I have lived with the rare condition Ullrich congenital muscular dystrophy.

It is a progressive, muscle-wasting condition caused by mutations in the COL6A1, COL6A2 and COL6A3 genes.

It is typically inherited in an autosomal recessive pattern (both parents are carriers of the mutated gene). However, in rare cases it can also be inherited in an autosomal dominant pattern (where only one parent has the affected mutated gene).

It frustrates me that so few people, medical professionals included, have heard of Ullrich congenital muscular dystrophy. In my experience, those who are familiar with muscular dystrophy tend to associate it with it Duchenne (the most well-known form).

Many people look at me now – a non-ambulant wheelchair user – and assume that I have always been this way (ie. unable to walk). This is not the case.

In order to raise awareness and familiarity of UCMD, here are a few photos of me growing up with this sadly unrecognised condition.

Above and below: My first wheelchair (manual). Prior to this I used what we, as a family, referred to a “buggy”. At this stage, I was able to walk short distances whilst wearing leg ‘splints’.

Below: In this photo I am around 11 years old. I loved this wheelchair (a manual, Quickie) as it was a sleek, black and purple design.

At age 10, I became unable to weight-bear. My muscles were simply unable to support my growing frame. It was therefore important to find a wheelchair that was comfortable enough to use all day long, whilst also looking half decent!

As you can see, the push handles on this chair were higher than average as all members of my family are tall. You wouldn’t think so, looking at me would you!

I always disliked the unusually high push handles (see above) as they stuck out above my head and were an aesthetic distraction.

Below: My next wheelchair – again a manual. I was unable to self-propel due to elbow contractures and muscle weakness.

Throughout my school years, I always used a manual wheelchair. This is one of the main reasons I hated school so much, since I was reliant on others to push me around. Wherever I was put, I stayed. It was incredibly frustrating.

Below: My Quantum F45 powered wheelchair (this model is no longer in production).

A relatively light-weight, rear-wheel drive with a narrow base, this chair served me well for many years.

This was in fact my second power chair. My first was a Jazzy Pride (front-wheel drive), which was great outdoors. Unfortunately I can’t find any photos to show you.

My Jazzy Pride wheelchair was purchased through public fundraising when I was 10-11 years old. At that time, there was just no way my parents could afford the cost of a powered wheelchair. Our local wheelchair services could not (or rather, would not) provide me with one.

Below: This is my current wheelchair – a Quantum 600, which I have had for almost 8 years. It is mid-wheel drive and VERY heavy!

I have to say – though it is a solid, sturdy chair – I wouldn’t replace it with the same make/model. Unlike my previous powered wheelchairs, it has let me down unexpectedly on various occasions and required quite a few pricey repairs!

It is rapidly falling to bits (literally) and most concerningly, the electrics are now failing. For this reason, I am currently on the lookout for a new chair.

These days, I primarily use a powered wheelchair rather than a manual chair, as it allows me greater independance and freedom of mobility. However, I do also own a Küschall Ultra-Light manual chair, mainly as a backup.

If you have found this blog post useful, I would be grateful if you could share to help spread awareness of Ullrich congenital muscular dystrophy.

Thank you!