Tricks of the trade - Equipment for living EDS and POTS

It can be difficult coming to terms with using disability aids when you have a chronic illness like EDS or POTS.  I started using a walking stick when I was 18 and everyone assumed I had some kind of injury because everyone knows only old people are allowed to use walking sticks!  It was difficult to explain how I was chronically ill but I've learned to accept that sometimes disability aids can make your quality of life a whole lot better.

Some aids are more useful than others, and what works for one person may not work for another but I thought I'd share some of the things that work for me.

Mobility Scooter

I started using a mobility scooter 13 years ago.  Before then my poor husband had to push me around in my wheelchair and we both hated it!  It was hard work for him and even though it allowed me to leave the house I still didn't feel like I had full independence.  That all changed when I got my scooter.  I could actually leave the house on my own for the first time in 10 years!

I've had a few scooters over the years.  I currently have a Pride GoGo Traveller Elite 3.  It's small enough to fit in the book of a Vauhall Corsa but has enough power to get me around.  I would be lost without it.




Smart Crutches

I started using a walking stick when I was 18 years old.  My physio gave me an ugly grey NHS stick.  It was heavy and made a loud click every time it touched the ground.  I hated it but it was a necessary evil.  I got fed up of it pretty quickly and bought my own walking sticks but some were better quality than others and I had a habit of breaking them.  I fell in love with SwitchSticks walking sticks, I had a couple of different designs but my physio said I was an accident waiting to happen and gave me NHS crutches.

I was back to using the ugly grey walking aids until a friend told me about Smart Crutches.  They are an improved design that is very adjustable and supports your forearm which takes pressure of your shoulders and wrists, which is a big problem with standard elbow crutches.  They also come in a variety of colours - not just NHS grey.

I got a pair of petite Smart Crutches in purple and I love them.  They are quite heavy and I don't use them all the time but when I do I always get positive comments, especially from health care professionals.  They are not cheap at around £90 a pair but they are miles better than standard elbow crutches.

You can buy Smart Crutches from the website http://smartcrutch.co.uk/


Grab Rails

Social Services sent an OT around to assess my home.  He said I needed grab rails but because I live in a new build house with plasterboard walls he couldn't safely install them.  I was left to look for an alternative and I found one - suction bath grab rail.

The suction cups allow it to be placed on any smooth, flat surface, such as the tiles in my shower.  I can adjust the position so I can get it in exactly the right place and the switches make sure it stays there.  The best part was the price - at only £6 it was a bargain!

I've been using it for a few months now and it's not let me down yet. The manufacturer does recommend testing that the grab rail is secure before using it, I don't know how long the suction cups will last but when they do finally degrade it's not too expensive to replace.



Shower Seat

I was struggling to stand in the shower so my OT loaned me a shower seat.  A few years ago I'd been assessed as needing one but the OT didn't think they had any which would fit in my tiny ensuite shower. Lucky for me they had some corner shower seats.

It's a tight squeeze to get the door closed and it's not a very stylish piece of furniture but at least I've reduced my risk of falling over in the shower, which is good.







7 Day Pill Box

This is an incredibly useful bit of kit.  I honestly don't know how I managed without it!  I am on quite a few prescription medications and I also take quite a few vitamin supplements too.  It was getting confusing remembering the dosage and times of all the pills, sometimes I'd forget if I'd taken them at all and I was in danger of under or even overdosing, so I forked out and bought an Anabox 7 day pill box.  It wasn't cheap at £17 but it has been very good value.

Every week I fill it with my tablets and now it's easy to see if I remembered my lunch time dose of painkillers.  Each day comes in a separate box so if I'm going out I can just take that section with me.

The morning section is larger than the others, as most people take more tablets in the morning.  There are sections for morning, noon, evening and night, as well as an 'are required' section for any extras you might need.  It's simple and brilliant!  The only bad thing is having to fill it up every week.  Popping 140 tablets out of blister packs takes it's toll on bendy fingers!

I have a great local pharmacy and they have offered to make up my prescriptions into blister packs, which are very similar to this pill box, but as my medication can change on a weekly basis and I occasionally require more or less of some medications I prefer to be in control and do things this way.


Elastic Shoe Laces

A friend gave me a tip about these.  My podiatrist advised me to wear supportive trainers so stop my ankles rolling and prevent me from spraining my ankle.  They work but it's a chore having to tie the laces.  Elastic laces allow you slip your trainers on and off with ease.  I honestly don't know what I did without them.  They are relatively inexpensive to buy and come in a variety of colours to match your favourite trainers.  Available from sports shops and eBay.






Derby Half Step

There is a steep step out of my back door to the path which takes it toll on my knees and hips, especially in the summer if we have a barbecue and I have to keep nipping back into the kitchen.

I considered building a step with bricks and pacing slabs but that would have made it difficult for my husband to get the lawn mover around the back of the house so I searched the internet and found something called a Derby Half Step.  It's designed, as the name suggests, as a half step to make steep steps a little more manageable for less able bodied people,

I chose a sturdy plastic step with adjustable feet and a rubber mat.  I had to shop around for a good price, I bought mine for £60 but I saw them selling for as much as £130.  It has made using the back door much less painful and has been a worthwhile investment.

You can get a cheaper version for around £20 but I decided against it after reading many negative reviews about the steps cracking and breaking after a few months.


Recliner chair and footstool

I think everyone needs a comfortable chair, regardless of whether they have a disability or not.  I indulged in a recliner chair and footstool to improve my posture and to allow me to relax.  I need to keep my feet raised to relieve my POTS symptoms and sitting in a normal armchair with my feet on a box footstool wasn't great for my posture.  I went to a local furniture shop and tried out loads of recliners, most of which I didn't like, but I did find one - the Shangri-La Swivel Recliner and Footstool.

The chair swivels so I don't have to turn my neck to talk to people sitting opposite me on the sofa and the footstool is angled which allows me comfortable rest my legs.  It's the most comfortable chair I've ever sat in!  It was a relatively cheap chair compared to other chairs on the market, the fabric is already staring to wear on the footstool but my budget wouldn't stretch to a leather Stressless.  Maybe one day...


A Final Note

Disability aids can be very expensive.  If possible try them out at a disability showroom to see if they work for you before committing to buy, then shop around on the internet for the best price.

Some aids are available from your local Occupational Therapy team, such as shower seats and grab rails so ask for an assessment to see if you're entitled to any help.

Mobility aids can be very expensive and the NHS are not always able to provide the best equipment to meet your needs.  If you are in receipt of DLA higher rate mobility or PIP Mobility enhanced rate you can lease a powerchair or mobility scooter through the Motability Scheme.