Category Archives: Mobility Equipment

Mobility Aids

When I was almost totally bedridden with M.E. going out of the house was torture.  Just being upright made me feel like I was dying and, once outside, the light, sounds and smells of the outside world were an actual assault on my very poorly brain.   The energy needed simply to get dressed had almost seen me off, leaving me with no reserves, so when I absolutely had to leave the house I used a wheelchair.

The experience had both positives and negatives.  Positive in the fact that, without the wheelchair, I was completely housebound but negative in the fact that I had no independence and was at the mercy of whoever was pushing me.  They often went at a pace I wasn’t comfortable with and stopped to chat to people they knew but I didn’t.  On the very rare occasions I went to the shops I couldn’t see any item on a shelf higher than waist height (a particular problem in supermarkets) and found being in a wheelchair a very isolating experience as it’s almost impossible to chat to whoever you’re with.  The reaction of the public was to be expected I guess.  Many people talked to my Carer, treating me like I was invisible, and the rest talked to me like I was mentally deficient.  Even my Mum, who was usually the pusher, at times treated me like a child.  I remember being in B&Q once and we were struggling to find an item so she said to me in a very loud voice “ask the nice gentleman over there Jak” like I was five and being encouraged to speak to strangers.  I could have throttled her.

My GP, otherwise supportive, didn’t want me using a wheelchair.  I was capable of walking so in her eyes I should just crack on and do it.  She, of course, had no idea the effects walking had on me or the hours, sometimes days if not weeks, afterwards where I lay on my bed feeling like I’d had 5 rounds of chemotherapy – puking, shaking, unable to think or speak and so weak I could barely breathe or open my eyelids.  She warned me that by using a wheelchair to get around I’d “go off my legs entirely”, not understanding that I was virtually “off my legs entirely” to start with hence the need for the mobility aid!  She wasn’t the one who had to live with my disease, or the consequences of walking around, I was so I promptly ignored her.

I have to admit using a wheelchair was a necessary evil but not an experience I want to repeat any time soon, so when I started to see some improvement in my M.E. I bought myself a small mobility scooter.  Now I could go out on my own, whenever I liked, at a pace I liked and to wherever I liked and it was brilliant.  It was obvious to the public I was mentally competent so they talked to me like a regular grown up and I found that other scooter users waved or stopped for a chat, albeit most of them were over 70.  The only negative was when I got off my scooter, for example if a shop wasn’t scooter accessible or if I needed to use the public toilets.  If you use mobility aids many people expect you to be paralysed or totally unable to walk, so I did get some peculiar looks and snidey comments about “miraculous recoveries” to which I’d raise an eyebrow and ask politely “is there a problem?”  Once confronted most people backed down and scuttled off.

Portable scooter which goes in the boot of the car (if you have someone to lift it in for you!)

My cousin once asked me if I was embarrassed at having to use a scooter, a question which surprised me.  For a start, without the scooter I couldn’t leave the house so to me it was absolutely fabulous.  And for another, what was it I was supposed to be ashamed about, exactly?  I hadn’t made myself sick.  Hadn’t robbed anyone.  Wasn’t a druggie or a dropout.  Hadn’t committed murder.  My body was poorly and didn’t function as well as it might – I’m still flummoxed as to where the shame is in that.  My view is that I’m lucky enough to live in a country where mobility aids are, for those who can afford them, accessible and I’m grateful for the fact.  I’m sure there are a lot of disabled people living in Africa who would kill to use a mobility scooter to get around.

Now my M.E. is at a moderate, rather than severe, level I do walk whenever I feel well enough.  I kind’ve understand where my GP was coming from and agree that, if it doesn’t make your condition worse, you should try to walk if you can.  It keeps muscles strong, heart and lungs healthy and helps control weight, alongside all the emotional and psychological benefits.  I am so grateful there are now days I can walk for 10 or 15 minutes down by the river with Bertie and I love and appreciate every second.  However, there are also days I am too exhausted, in too much pain from my Ehlers-Danlos, or simply feel too ill to walk, so still regularly use my mobility scooter and am grateful to do so.

Having EDS means I live with chronic pain and frequent injuries.  My back and hips are particularly badly affected and I have issues with my sacroiliac (SI) joint.  When I stand and walk the pressure on my SI joint, lower back and hips can be incredibly painful and there are times I need to take the pressure off the lower half of my body by using crutches.  I fucking hate my crutches.  The NHS ones were useless, heavy and hurt my arms, wrists, elbows and shoulders, so I bought some Smart Crutches which, if you have to use crutches, are as good as it gets.  But they’re still a pain in the arse.  Trying to manoeuvre steps and stairs on crutches is a mare and, if you use them around the house, they just get in the goddamn way.  What the hell do you do with your crutches when you’re making a brew, for example, or a meal.  Doing the washing up or having a pee?  They just constantly get in the road and, having leaned them against the kitchen counter while I put the kettle on, inevitably end up falling on the floor.  I should probably use my crutches more than I do but unless I’m absolutely desperate I can’t stand the hassle.  If I had the money, and my house was suitable (which it’s not) I’d much rather use an electric wheelchair on my bad days than crutches, but at the mo it’s just not an option.

I put off using mobility aids for years because of a lack of knowledge about my diseases, how to manage pain and effectively conserve energy.  I thought using disability equipment was somehow giving in when in reality I was just punishing myself unnecessarily.  These days I’m much better at knowing my energy limitations, recognizing if I’m having a particularly bad day or am injured, and altering my mobility needs to suit.  I’m grateful I have access to aids which help my daily life and would actually use more, not less, if I could afford to.

All terrain Class 3 road scooter.

Mobility Aids

When I first became severely affected with M.E. I was too ill to leave my bed, but after about 6 years I started to see some slight improvement and was able to sit upright again for short periods.  I desperately wanted to be able to leave the prison that my house had become but knew the only way was going to be in a wheelchair.  My GP was totally against the idea saying I would go “totally off my legs” if I used one, but in fairness I’d been virtually unable to walk for years at that stage and I was only using it for occasional trips outdoors, not permanently indoors, so I ignored her.  I’d already had to fight my own mortified feelings at being pushed around by my parents  at the age of 30, but never leaving the house again was worse, so I swallowed my pride and hired a wheelchair from Age Concern on the days I wanted to go out.  It currently costs about £8 to hire a wheelchair, though this will differ depending where you live.  You can get wheelchairs on the NHS and be assessed on a model that’s right for you, but it takes forever and they tend to be old-fashioned and really heavy.  You can also buy wheelchairs online.  We got one for my Mum last year off Amazon for under £100 and it’s great – small, lightweight, maneuverable, with breaks on the handles rather than on the wheels and at only 3kg perfect for putting in the boot of the car (click here to see the one we chose).

The reaction of the public to my being in a wheelchair was mixed, but on the whole people treated me like I was mentally retarded.  They would talk about me to my Mum and she had to keep saying “Jak’s right here, you can talk to her” and it was priceless to see the shock on their faces when an intelligent, articulate young woman spoke back 😉

Over the next 4 years my improvement slowly continued and eventually I felt strong enough to use a mobility scooter.  Being pushed around by someone else is really frustrating as you go where someone else wants to go and at their pace, plus I wanted to be able to pop to the shop on my own and wasn’t strong enough to mobilize my wheelchair alone.  Mobility scooters can be stupidly expensive and I had no money, so I contacted my local Mobility Shop who sell second-hand models and arranged a monthly payment plan using my Disability Living Allowance (after all, that’s what it’s for!).  I also contacted Social Services who arranged for a portable ramp to be added to my front door step and, living in a terraced house with no garden, I just had to keep my scooter in the hall. They need to be regularly charged, but the battery does come off so you could keep the scooter in a garage or shed and just charge the battery in the house.

I’ve had 2 different portable scooters, initially a 3 wheeler whose name escapes me and next a Pride Go Go Traveller 4 wheeler, both of which came apart to go in the boot of a car.  Despite being labelled as “portable” if you’re thinking of getting a mobility scooter be aware they are all ridiculously heavy and often fiddly and difficult to pull apart and put back together.  I really struggled to do this on my own and needed help to disassemble, lift into the boot and reassemble at the other end, kind’ve negating the whole point of it being portable!   Having said all that, I loved (and still love) having a scooter.  I could leave the house whenever I liked, go into (most) shops, get to the bank/cashpoint machine, the supermarket, the hairdresser, and zoom round town all under my own steam for the first time in years and it was *brilliant* 🙂

Joe Public treated me totally differently on my scooter than in my wheelchair.  Because I was out alone it was obvious I wasn’t mentally deficient and other scooter users all waved to me or stopped for a chat, although it was weird being in my thirties when everyone else was old!  There were some shops which weren’t accessible, so I’d just park up outside and walk in.  This did, on occasion, give rise to some funny looks and negative comments about miraculous cures but you just have to ignore people’s ignorance and get on with your life.

The difference using a scooter made to my health was remarkable.  Before, if I had to go out I’d use every ounce of energy I possessed just standing upright and walking 50 steps and would come home afterwards feeling like I was dying and spend the next 3 or 4 days in bed feeling so ill I wished I were dead, but I could travel for half an hour on my scooter and feel no negative effects whatsoever!  I can’t begin to tell you the freedom that offered me and how fabulous it was to feel part of the world again 🙂

When I moved from the town to the countryside 13 years ago I faced new challenges in getting around.  There were no nice pavements with dropped curbs, the roads were uneven and covered in cow muck and although there were some gorgeous public footpaths right next to my house there’s no way on earth my travel scooter could manage their rough terrain.  When I got Bertie in 2011 and had to take him out every day of my life I realized that my little scooter wasn’t suitable for country living and I needed to bring out the big guns.  So I bought a second hand all-terrain scooter, an 18 stone beast of a machine with an 8mph speed limit and, most importantly, all round suspension.  I went for a Drive Sport Rider for no other reason than that’s the only 2nd hand scooter available in the mobility centre at the time, but the fact it is stylishly based on a Harley Davidson motorbike trike and doesn’t look like a scooter at all is an added bonus 😉

I don’t have a garage, but do have a 3 sided car port so I keep it in there.  I concreted a post into the ground, and have it chained to that with a gold standard motorcycle chain for security.  I also put a cover over it to keep off bird poo and moisture.  Charging my scooter, however, was a problem because the batteries are massive and don’t lift off so you need to have a power point next to where you keep the machine.  My car port doesn’t have electricity, so I had to buy a weather-proof extension cord which plugs into a powerpoint in my little shed and I tacked the cable to the side of the house until it reached the car port, housing the extension in a weather-proof box.  The biggest downside of my “Harley” is that it is in no way portable so I can only use it around my home.  If I wanted to take it further afield I’d need to buy a trailer with a ramp to tow behind my car – something I’d like but simply can’t afford (plus I have nowhere to store a trailer).

In summer I adore my scooter.  It won’t go everywhere but I’ve taken it through fields, across streams and in forests and it zips up and down the rough roads in my village with ease.  I’ve even put a dog carrier on the back, so that if I want to go on a busier road and don’t want Bertie walking beside me I can pop him in there and zoom along at top speed, letting him back out again when we get to our destination.  The one thing I will say, though, about using a large scooter is that you do need some upper body/arm strength particularly if driving on very uneven ground, but if you’re just going to be tootling along on the road you can lean back, relax and let the wind blow in your hair.

I’m not going to lie, it’s not half as much fun using my scooter in the winter.  Most scooters are not waterproof, a fact which astounds me, so although you can use them in wet weather you have to cover them, particularly the electrics.  On a drizzly day putting a dustbin liner over the console will suffice, but when it’s pouring down you have to use either a rigid canopy (expensive) or a scooter cape.  I use a cape, which is fine until Bertie does a poo and I need to get off to pick it up, when getting out from under the cape and then back under the cape again is a right palaver!

Despite the downsides, however, I wouldn’t want to be without my scooter and certainly couldn’t have had a dog without one as I live alone and have to take him out each day myself (I pay a dog walker to do the morning walk as I struggle with early mornings health-wise, but can’t afford her to do afternoons too).   I also use it for my photography, driving off into the woods where I sit quietly with my long lens and wait for the wildlife to appear.  If you’re thinking about getting a scooter don’t hesitate – it’s made the difference between being housebound and being mobile to me and I love mine 🙂

To finish, here’s a little bit of technical information about mobility scooters:

  • You don’t need a licence to drive a mobility scooter.
  • There are different classes of scooter:
    Class 2: you can’t drive these on the road (except where there isn’t a pavement), they have a maximum speed of 4mph and you don’t need to register them.
    Class 3: you can drive these on the road but you must be 14 years of age or over to use one.  They have a maximum speed of 8mph on the road, but you should limit this to 4mph if driving on a pavement (they usually have a button to press for max and min speeds).  You need to register Class 3 scooters with the DVLA but this is free.  They are also more like motorbikes in as much as they have to have indicators, front and rear lights, horns and mirrors.
  • Insurance is not a legal requirement for mobility scooters.  However, I would strongly recommend it particularly if you have a Class 3 scooter which you plan on driving on the road.  At the very least, personal liability insurance should be taken out by everyone with a scooter in case you accidentally injure another person while you’re using one (I once drove over someone’s foot in the supermarket!).  In addition, breakdown cover for Class 3 scooters is also advisable – there’s no way I’d be able to push my 18 stone scooter home if it conked!  I get both insurance and breakdown cover for £99 a year from Blue Badge Mobility Insurance.
  • Mobility scooters should be serviced by a dealer once a year.

Full details on the rules governing scooters in the UK can be found here.

Weekly roundup

I’ve had one of those weeks where life has seemed tough.  Every joint is hurting, I’ve struggled to sleep for over 3 months now and am beyond exhausted, I’ve had a bad run of migraines one of which kept me up all night on Thurs vomiting and I had a mast cell reaction on Fri night which now means I’m petrified to take my H2 anti-histamine.  So I’ve had a break from it, and the anxiety, and now have rampant reflux which is simply agony and my cough is back so acid is obviously spilling into my lungs.  After 20 years of living with these kinds of symptoms, and more, every second of every day, I’m kinda tired of the whole thing.

I’m not getting on very well with my Smart crutches.  I ideally wanted a black pair, but after reading the blurb realized I needed the smaller crutches with the shorter leg and arm rest lengths and they only come in red, blue and grey.  I settled for grey, which are actually still very smart with black stripes, and they are definitely much lighter and more user friendly than the NHS gutter crutches.  However, the cuff which goes round your arms is massive and as I walk along my arms just fall out of them.  Not sure why they’ve made crutches for tiny people and put a standard cuff on them?  I’ve kept meaning to ring the company for advice, but it’s just another chore to add to my list and I’ve not gotten around to it yet.  I think I’ll try sticking some foam inside to pad the cuff out and make it smaller (I don’t want to use any kind of tie because it makes them impossible to put on or take off on your own).

Monday I took my Dad 30 miles to our local hospital for a follow-up endoscopy (he’s had severe stomach problems for years).  We got there at 1pm, his endoscopy was due at 1.30pm, it takes about 90 minutes, so we thought we’d be home about 4pm.  Think again.  We sat in the packed, boiling hot, waiting room on rock hard chairs until 2.45pm when they finally called his name.  I told the nurse I was popping into the city to do some Xmas shopping for my Mum and would be back in 90 minutes.  I got back to the hospital dead on time to find my Dad, stony faced, sitting in the waiting room.  Thinking he’d finished early and had been waiting for me to pick him up I apologized, but he said “oh, don’t worry about it – I haven’t had the damned thing yet!”.

By that stage he’d been sat there for nearly 3 hours.  I pressed the buzzer to the theatre and asked a nurse what was happening.  Apparently there’d been several emergencies in that afternoon, which I understand, but not a single member of staff had been out to the waiting room to tell any of the patients what was happening.  They’d just left them there.  My Dad was told not to eat or drink anything for 6 hours before the procedure.  He wasn’t up in time to have an early breakfast, so hadn’t had a bite since his supper at 5.30pm the night before, nearly 24 hours earlier.  Good job he’s not diabetic.  By the time he had the procedure done and we arrived home it was 6.30pm – we were both totally fed up and my Dad was absolutely ravenous.

The week has not been a total right-off however.  As regular readers know, my Mum has been coughing up blood again and had an emergency CT scan last Tuesday.  We got the results and there has been no significant change since her last scan, so that was a massive relief.  We still don’t know why she’s coughing up blood, but it has happened before, went on for 3 months, then just stopped.  I’m convinced she has Ehlers-Danlos and has very fragile capillaries and it could just be that, because of her severe recent chest infection and all the coughing she did, she’s damaged some of them (is that even possible?).  She also has horrendous nose bleeds for no reason anyone can fathom and which can happen in the middle of the night while she’s sleeping.  Anyway, they’ve made her an appt to see a pulmonary specialist in Feb.  Not sure why, as there’s nothing anyone can do about her lungs, but we’ll go anyway and see what they say.

My other big news of the week is that the results of my second Camera Club competition were announced on Wednesday.  It was on a set theme of flowers, so I submitted 2 very different pictures: one of some poppy seed heads taken in my garden, and one of some wild poppies in a rape field taken on a walk with Bertie early one morning.  To my amazement the seed photo won me 2nd place and the poppy flowers won me 1st!  As I’d never taken a “proper” photo in my life until 3 years ago and am completely self-taught (which is code for ‘haven’t a clue what I’m doing’) I’m always gob-smacked that seasoned photographers think my pictures are good in any way!

1st place

1st place

2nd place

2nd place

Right, it’s now 8.30am and I really must get up and have some breakfast.  My dog walker doesn’t come on weekends, so I have to take Bertie out at 9am which, with the new scooter, is no bother.  I always wake between 6am-7am, regardless how little sleep I’ve had, and do nearly all my blog posts at this early time of day as my brain works at its best just after I’ve woken up.  I know this totally flies in the face of most people with M.E.’s experience, where their brains simply don’t work in the morning, but I’ve always been a Lark and do all my paperwork before 11am because after that my brain is simply not capable!

Mobility Scooter Review

I love to go out with my dog and to take photographs but my current hip pain is making any kind of walking impossible.  I do have a small mobility scooter, which dismantles to go in the boot of my car and which I’ve used extensively over the past few years, but it’s only designed for pavements or indoor surfaces.  I live in a very rural area and am surrounded by farmland, dirt tracks and woods, which are wet, muddy, boulder strewn, pot-holed and rough and it’s made me really sad over the past few months to have to stick to the roads with Bertie on his lead and not be able to go to our favourite haunts where I can watch the wildlife and Bert can run free.

A few weeks ago I rang my local mobility centre and asked if they had any all-terrain mobility scooters for sale.  I can’t afford new but they often sell second/third-hand and luckily for me they had in a Drive Sport Rider.  It’s not technically an all-terrain scooter like, for example a TGA Sport or a Tramper, but it does have very large wheels, rear wheel drive, all round suspension and a very large motor so it theoretically should tackle some pretty rough ground.

Even second-hand, all terrain scooters are really expensive – new they cost anything upwards from £3,500 ($5,480) and going as far as £20,000 ($31,300) for a caterpillar – so it was a huge financial decision for me.  For that reason I asked if I could hire the scooter for a week to try it out before committing to buy, and luckily for me the man said yes (although charged me £100 for the privilege :-/ ).

The Sport Rider is not your average doddery old foggies scooter.  Oh no.  The design was based on the Harley Davidson motorcycle and it definitely has the look of a mortorbike trike, being 3 wheeled and with a distinctive mortorcycle-style front chassis.  It has adjustable wing mirrors, rear lights, head light, front and rear indicators and a basic trip computer which tells you battery life, speed, miles driven and the time.  It also has a swivel seat, which can be pushed forward or back depending how long your legs are, adjustable armrests for height and width, and the backrest can also be angled.  It has an indoor (3mph) setting and an outdoor (8mph) setting and can zip along at a decent pace on the road.

Apart from the indicators, all the other controls are on the right handlebar (the handlebar is also adjustable and I’ve had to tilt it down somewhat to be able to reach!).  You drive by pushing a lever forwards and if you let go it automatically stops.  The scooter does, however, have an additional manual emergency brake on the left handlebar.

When driving along smooth surfaces it’s a seriously comfy ride.  I did, however, put it through its paces along some rough terrain.  It was bumpy, and you do need some upper body strength to keep the steering and throttle going, but I’m only tiny and quite weak and coped without any problems.  It took a bit of getting used to the fact that it’s a three, and not a four, wheeler and at times I did wonder how far I could tilt it without it falling over, but actually it’s incredibly sturdy (it weighs a ton) and due to the three wheels it turns on a dime.

I drove it over a bog, up a rain soaked field, a muddy rock strewn farm track and through water (not recommended as you shouldn’t get it wet!) and it took everything in its stride.  Needless to say I’ve decided to keep it 🙂 .

The salesman from the mobility centre needs a good slap though.  One of the most important considerations when buying a second hand scooter is how old the batteries are.  They only last about 18 months in any event, and can be seriously expensive to replace.  So I asked the salesman twice how old the batteries were and he replied “about 6 months”.  Lying little slimeball.  I took the seat off and removed the battery cover to check and the ticket inside said they were installed in September 2012 – over 2 years ago.  Instead of doing the 30 miles on one charge they were supposed to I was lucky to get 6 miles!  The scooter uses 2 batteries, and to replace they cost around £300 ($470)!!  How can this man sleep at night knowing he’s ripping off elderly and disabled people? 😦 .

So at the end of the hire week I rang the salesman to discuss the scooter.  I thought about it hard before hand and worded the conversation so that he was left in no doubt I knew that lying about a product breaches the Sale of Goods Act.  This resulted in him knocking the £100 hire charge off the purchase price and him fitting brand new £300 batteries.  Result!

I’m now looking at pannier bags for my bits and bobs (mainly my camera plus Bertie’s lead, treats and poop bags), an all weather cover (dogs still need to be walked in the rain sadly) and some kind of dog carrier so that Bertie can be safely strapped in that until we get where we’re going (you can get a proper pannier box which fits on the back but it’s not suitable for a mutt).

Class 3 scooters need to be declared to the DVLA though this is free of charge.  Insurance isn’t compulsory, but it’s best to be covered for theft and personal liability in case of accident.  I’m also going to need breakdown cover, because if this baby conks on me in the middle of a muddy field it’s not like I can push it home!

I can’t wait for next summer.  The scooter will do up to 30 miles on a single charge, so Bertie and I could tramp all over for hours without walking a single step 🙂