January 2020 – Disability & Lifestyle Blog

New Year, More Me!

We’re now in the midst of January, and many are following a “new year, new me” health and fitness regime.

Most of us over-indulge at Christmas. Too much rich food and too much booze.

Everywhere you look, it seems people are trying to lose weight and tone-up. Fair play to them! Do what makes you feel good.

But just to break the trend, here I am trying to put on weight!

Okay, so…I’m teeny tiny. Pixie sized! My weight has always been fairly consistent and never really fluctuated.

Of course, my condition influences this. Muscle weighs vastly more than fat, right? Well, I have very little muscle mass. And so my BMI is always going to be much lower than the average.

I won’t lie, I’ve always consciously monitored my weight and my calorie intake. Not due to vanity, but practicality.

I am non-ambulant and therefore cannot transfer independently. I get thrown around a lot! From chair to chair, chair to bed etc. If I were significantly heavier, life would be much more difficult!

People who struggle to lose weight often ask me how I stay so tiny, considering I’m unable to exercise. Well…

~ Growing up with older brothers helps! I’ve always scraped food off my plate onto theirs. And they were always happy to finish off any food I left.

~ Study food labels and count calories.

~ Self limitation. I’ve almost trained myself to say no when someone offers me chocolate or a biscuit. Bad, I know.

~ It might sound silly but, over time your stomach does shrink and your body adapts. You learn to function on fewer calories.

*Now, to make it absolutely clear, I am in no way dictating, advising or advocating such bad habits! I am very much aware that this is unhealthy behaviour.*

So, why do I now want to put on weight?

When I’m ill, I eat less. When I’m really stressed, I stop eating. In these instances, I am NOT consciously monitoring my weight.

Over the past 2 months, I have unintentionally lost weight. This will no doubt affect my overall health and wellbeing, reducing energy levels and leaving me vulnerable to infection and illness.

Believe it or not, increasing calorie intake is far more challenging (for me) than you might imagine. It’s difficult to break the habit of a lifetime!

Before, I would go literally all day without eating a thing. No breakfast, no lunch. I would then pick at my dinner and that would be it.

I am now constantly reminding and forcing myself to consume food and drink, little and often, throughout the day.

If I can put on half a stone, I’ll be happy. I’ll still be skinny, but I’ll be healthier. That can only be a good thing!

Wheelchair Review & Complaint

Sunrise You-Q Luca ~ Poor Quality Armrests

In October 2018, I was able to privately purchase a new powered wheelchair, replacing my worn-out 8 year-old Quantum 600 mid-wheel drive.

I opted for a Sunrise You-Q Luca, mainly due to it’s compact and manoeuvrable design.

I chose a rear-wheel drive (having found my mid-wheel drive Quantum to be less capable over rough terrain).

I received a voucher from NHS Wheelchair Services to the value of £1750, and a £2,500 grant from the Joseph Patrick Trust.

The total cost of the chair was just over £7,000. A huge expense, but compared to most other powered wheelchairs on the market, the You-Q Luca is definitely one of the cheapest options!

I really wanted flip-up armrests on my new wheelchair to make transferring easier. However, over the past year, the soft foam pads on the armrests have slowly disintegrated.

Bearing in mind how expensive this equipment is, and how long it took to raise the necessary funds, I take good care of my wheelchair!

I have repeatedly attempted to patch-up the armrest pads with super glue. But they are now in a state of non-repair.

Considering the price and the fact that the wheelchair is only 15 months old, I am really shocked and disappointed with the product.

The wheelchair itself is great. The armrest pads are total crap!

I bought the wheelchair from a company called Better Mobility.

I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).

However, I find the quality of the armrest pads to be extremely poor.

As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!

I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.

Please share!

Guest Post | Wealden Rehab ~ Occupational Therapy

Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team

Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).

Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.

Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
outcomes.

Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.

Installation of multiple celing hoist units at Foreland Fields School

Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.

Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.

Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
experience.

In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’

Ceiling hoist installation by Wealden Rehab at the Chiltern School

Many thanks to Wealden Rehab for providing this guest post.

Physical Health & Mental Health

Physical disabilities/impairments and mental health issues are not mutually exclusive!

Many people, like me, living with disabilities and chronic illnesses are affected by stress, anxiety or depression at some point in their lives.

This is not to say that the disability/impairment, whether temporary or permanent, is the primary cause of the mental health issue. It could be a contributing factor, or they may be completely unrelated. You might just be super lucky and have been blessed with both – Double whammy!

Equally, those struggling with their mental health will often (if not always) experience physical side effects, such as headaches, fatigue, insomnia, restlessness, nausea and chest pains.

Essentially, what I’m saying is, the mind affects the body and so the body affects the mind.

My Disability & Point of View

I was born with a rare form of muscular dystrophy – a physical disability – that has progressed over time. I am now a non-ambulatory wheelchair-user, having lost the ability to walk at age 10.

My condition has a considerable effect on my body and physical capabilities. With the best will in the world, there are many things I cannot do.

For example, my older brother is very fit and able-bodied. He has travelled the world and often goes trekking through the countryside and climbing mountains.

Last year, he and some mates completed the Three Peaks Challenge in aid of Muscular Dystrophy UK. Gruelling and possibly a little bit crazy, considering the 3 lads did all the driving themselves – but wow!

I often wish I could be out there with him. It might not be everyone’s cuppa, but it would be nice, just once, to experience that sort of thrill and adrenaline rush. A real physical accomplishment whilst being in the midst of nature.

But, I can’t. And I never will. Of course, this gets me down and impacts on my mood. Yes, I wish I could walk, run, dance, be completely independent and spontaneous. But I can’t. I am limited and reliant on support from others to live my life. This is something I have no choice but to accept.

There is no treatment, no cure, and no pill I can pop to help the situation. For lack of a better phrase, it is very much a case of, deal with it!

I cannot control my disability or how it affects my body. Therefore, it is important to focus on the things I CAN do and control.

I can’t dance, so I like to watch the dancing (yes, I’m a sad, old Strictly fan. Don’t care!)

I can’t drive, so I have a passenger WAV (wheelchair accessible vehicle), which allows me to get out and about.

My Motability passenger WAV (Wheelchair Accessible Vehicle)

I can’t walk or run, so I roll (with style)!

Admittedly, I’m pretty crap at sorting my own problems out. So I tend to focus on other people’s 😂 Not necessarily a good thing, but there ya go!

Living with a physical disability is a way of life. It is inflicted on us – we have not chosen this path. Similarly, living with a mental health illness is a way of life. So what you gonna do? ADAPT or Die!