There are times and days when I feel like a fraud and embarrassed to be using a mobility scooter. I only use it part-time, but I feel that to many people I don’t look disabled, I’m not an amputee, or suffering with a neurological condition which visibly affects mobility . So what gives me the right or permission to use a mobility scooter, and equally why do I feel I have to justify using one?
I have succumbed to needing one because I have fibromyalgia (FM), together with back pain due to severe degenerative disc disease, osteoporosis and osteoarthritis in my spine, which I feel have got worse over the past few years, leading to reduced exercise tolerance, and I can no longer walk the distances I used to. The impact of these hidden or invisible disabilities, is the ongoing daily struggle with chronic pain and fatigue which has become progressively more debilitating and incapacitating. It is easy to flare up my symptoms by overdoing activities, be it physically, cognitively or socially, which can poleaxe me, so there is always a payback which can put me on extended rest in bed for hours or days to recover. I can and still do walk. I need to keep as active and mobile as possible. Some days I can achieve considerably more than others, which can give the impression that I’m faking it. Yet people don’t see how I am behind closed doors, except those closest to me, and the after effects of pushing myself beyond my limits to be and do ‘normal’ activities.
I’ve been managing these and other long-term conditions for over ten years now, and I know that the key to managing FM is a four letter word which to most of us is like a dirty word, i.e. to P-A-C-E, which is far easier to talk about than to do! Despite being a rheumatology expert patient volunteer at the Royal National Hospital for Rheumatic Diseases RNHRD Fibromyalgia Services, assisting to educate newly diagnosed FM patients on a Fibromyalgia Self management Programme (FSMP), I still finding pacing very difficult to do! I’m frequently held to account by my PT and OT to look after myself better and try to pace more! More a case of practice what I preach!
Last year I went through a particularly stressful and tough time physically and mentally which had a significant impact on my health. A psychologist friend, supported by my occupational therapist (OT) and physiotherapist (PT) advised that I get a mobility scooter, to enable me to pace better by conserving and extending the range of my energy levels in order to keep doing the activities I need to do and enjoy such as walking our dog. I initially bulked at the idea and questioned if I really needed one.
So I started to make tentative enquiries, I even contacted BBC Disability Correspondent Nikki Fox for advice, as she uses a mobility scooter and had done a piece for BBC One Show on mobility scooters. I had an assessment with an O T at The Independent Living Centre, and was able to try out a few scooters and given lots of information to go away and think about. I noted that their mobility scooters were on loan from a local company Optimum Mobility. It was a shock to realise how expensive they are and that it’s a minefield trying decide what type suits one’s particular needs! It’s like trying to buy a new car, there are so many different makes, models, Classes – Type 2 is 4 mph pavement use, Type 3 is 4-8mph road worthy and pavement! There was no way I could afford a new one and decided to see what second-hand ones could meet our minimum requirements?
One thing the OT suggested was to try them out locally at places such as the Shop Mobility Schemes that run across the UK e.g. Bath Shop Mobility which allows people to borrow for an hour or two to ride around town and shopping centres. This started to give me some confidence using them and seeing what they are like. I felt so embarrassed the first time and thought everyone was watching me and wondering if I genuinely needed one. So I drove off down some quiet side streets and relaxed a bit. I tried out manouvering in a shop which was interesting and humorous as I kept bumping into things, thankfully not people! I have since learned to look behind me and manouvre quite deftly!
My husband who has Parkinson’s Disease, also has mobility problems and fatigues easily. As we are members of Westonbirt Arboretum Forestry Commission, we found out that they too had mobility scooters on loan free, to get around the arboretum which was a pleasant surprise! We took Monty our Sheltie with us, and tried them out. The sense of freedom put big smiles on our faces, and Monty adapted to us whizzing about whilst he ran around off leash – Westonbirt Arboretum.
Our needs were pretty simple, I/we need a mobility scooter essentially to be able to walk Monty to the local parks, as that is the most physically draining activity for us both. So it needed to cope with grass, pavements, slight uneven grounds and fit into a small car. We were not looking to emulate the Top Gear Team vs The Army and go off-piste across rugged countryside, but if you want a laugh and how not to use a scooter check their video on YouTube Top Gear- Mobility Scooter Off-Road!
Amazingly, a friend mentioned that she knew someone who was selling their 7 year old scooter. It had hardly been used and the batteries recently replaced. So we tried it out and it seemed to meet our requirements and all for about £200!! It is a Roma Medical Paris Shoprider Class 2 4mph mobility scooter, available on Amazon UK which breaks down into 5 parts to put in our small hatchback. We’ve named it ‘Cool Runnings’ after the film of same name!
It immediately began to make a difference to me (it has taken my hubby more time to gain condidence using it) and I have found that it has helped me to manage my fatigue better. It is too heavy for one person to man handle into the car, the heaviest parts being the battery and motor, so we tend not to take it out in the car much, using it mostly from home. But we may look into whether there is a car hoist that will fit our car which would overcome that issue. We’ve probably abused it in the year we’ve had it, as it has recently started to breakdown and had to replace the electric connections to the motor. Our mechanics pointed out that it was not made to go on grass, tackle uneven ground or go up hills, which we can’t avoid where we live! So we are now on the look out for a scooter that will have more poke and tackle the terrain we need it too. But our first year using this scooter has given us some experience and opened our eyes to the freedom and possibilities it has given us. Take a look at my post – Mini Adventures In A Mobility Scooter
However, I still feel ashamed and embarrassed about using a mobility scooter, and that whenever I meet people, even ones we know, who express surprise at seeing me in one, that I feel I have to justify myself. As a psychology student, (see my post Old College Gal) I expect this is possibly more to do with my own personal insecurities and fears of what others think of me, and that there is probably a psychological explanation for this. In the process of writing this post I thought I would do a Google search asking the question, ‘Am I a fraud using a mobility scooter with fibromyalgia?‘, just to see if I was the only one feeling like this, and if anyone else has asked similar questions. And yes, someone had answered this question on their own blog by ‘February Stars’ which you might find helpful to read: Choosing to use a wheelchair when you have fibromyalgia.
Another blog that has helped me think through the benefits and issues of using wheels, and has some really useful information especially for wheelchair users is Part-time on Wheels.
Well done for surviving reading this mammoth post! I hope that you might find something helpful in what I have written. Sorry for having rambled on a bit! I may in due course separate out the topics and move them to separate posts covering FM specifically and on buying a mobility scooter. But for now they will be left clumped together.
For more information about the conditions and how to manage FM check out: