Electric Wheelchair

What is an ambulant wheelchair user?

October 28, 2024 11 Comments

Press play to watch/listen to What is an ambulant wheelchair user or scroll to continue reading.

The term ambulant wheelchair user refers to individuals who are disabled and use wheelchairs but are capable of walking in some circumstances. I am one of these individuals.

Ambulant wheelchair users report harassment and discrimination simply because the public is unaware of ambulant wheelchair use. Share on X

One of the first symptoms prior to diagnosis was positional vertigo, which caused balance issues and to counteract these, I started to use a walking stick.

walking sticks and walking poles in a blue vase — walking sticks

However, I couldn’t walk very far without other symptoms starting, my heart rate would rise and my blood pressure would drop, resulting in near syncope (fainting), not an ideal position to be in when you are walking.

I was struggling, and I asked if there was any medication to help me and my GP informed me my heart rate and blood pressure issues were down to fatigue, so I had to manage my fatigue better.

To help with this, he suggested I should use a wheelchair when I was out and about and he would refer me to wheelchair services who would be in touch with me.

The following week, I received a phone call from the GPs secretary asking me for my height, weight and hip measurement.

I wasn’t ready for this and even broke down on the phone, the realisation now that I was going to be a wheelchair user for the rest of my life.

Transit wheelchair

I took delivery of a transit wheelchair and even as the delivery driver was explaining how to put it together, it still hadn’t sunk in that this was for me.

Here was a once independent person who was always used to having to look after herself now, having to rely on friends and family for support.

It wasn’t helpful when being told that “once I started relying on the wheelchair; I would never get out of it, so I needed to stay away from it and just manage without.”

So, all the feelings of guilt, embarrassment and even realisation this might be true washed over me.

My life had been on hold because it was getting increasingly difficult to go out and see people, do the things I had once loved so much, watch Hull FC

Eventually, I pulled my big girl pants up and swallowed my pride and realised I had to ask for help.

Rachael in a black and white jumper with black leggings, with Emma at her side and Jackie stood behind her in a transit wheelchair — Jackie, who is standing behind me, pushed me around Liverpool and the Curve Fashion Festival in this transit wheelchair. She did also hit a bump on the red carpet and threw me out of it… much to everyone’s amusement by those around us, including me, to be fair.

My wonderful friend Nicky and her husband also offered to push me, so I could attend rugby once again..

Self-Propelling Wheelchair

After a month with the transit wheelchair, I was still not happy asking people to push me. I had a thought that at least if I got a self-propelling wheelchair I would be able to propel my self.

Contacting wheelchair services, I asked if I could swap my transit wheelchair for a self-propelling one and they agreed.

Now, my idea of a self-propelling wheelchair was I would be able to self propel myself. Visions of para Olympics sprang to mind, images of whizzing up and down roads and pavements firmly fixed in view.

No way, haha, for a start I have left-handed side weakness and my left arm isn’t as strong as my right, so I was uneven with the strength I had to propel myself.

You also have to bear in mind I aren’t particularly light, you don’t realise that while you have to turn the wheels, it’s you, your weight you are trying to move, so uneven strength puts you on the back foot straight away.

My first trip out with the self-propelling was to the job centre for my UC assessment, parking up behind the building. The entrance was at the front.

So clever I, thought it’s ok. I will just propel myself around the front and all will be well. I got out of the car, unloaded the chair, and got in it. My mum was with me and she offered to push me. Nope, I was back to being independent. I would manage.

Guess who hadn’t taken into account the uneven pavements, the wind blowing in my face, the energy and strength I needed to propel myself while moving slightly uphill?

When I reached the entrance, I was completely worn out and grateful to have a rest while going through my UC assessment. So much for a wheelchair helping with my fatigue levels.

Not happy with completely wearing myself out attending the job centre, the one that won’t be held back, thought it was a really good idea to go for some lunch.

So, parking up where I thought was near to the cafe, at least it was near if you were walking.

I quickly learned another lesson that town centre pavements were not meant for wheelchairs.

Where we parked, there was no dropped kerb, so I had to propel myself to find one. When I finally found one, it was broken, leaving only a tiny space to get up and onto the pavement.

Once on the pavement, it was time to find out that the pavements of Hull were uneven, with bits sticking up causing a hazard to me and my wheels. I nearly bounced out of the chair a couple of times.

Eventually, I managed to self-propel myself to the doors of Debenhams, yeah automatic doors which I managed to get through, but by this time I was absolutely shattered and just wanted to go home.

After doing a bit of shopping, we decided we were going to go and eat in the cafe next door.

So I headed towards the automatic doors and what I thought was a lovely gentleman rushed in front of me to open the doors, but alas no, he was rushing to get in front of me because I was in his way and just as I set myself to propel towards the doors they closed in front of me. Gee thanks pal.

Thankfully, two lovely ladies were at the other side and they opened the doors for me and I propelled my way onto the street, back to the bloody awful pavements of Hull.

Next door to Debenhams is a cafe that in my younger days going into town with Mum or Grandma, we would call in for a tea cake and a cup of tea.

Arriving at the entrance where they proudly displayed a disabled-friendly sign, there was a slope, but it was all broken up with a big ridge at the top and doors that opened towards me, yes very disabled-friendly indeed.

Finally, through the doors and into a seat, ordered some food and asked to use the toilet. Yes, they had one which was down the side of the building, haha best not then thanks.

When we left, I decided the quickest way was to use my chair as a walker and push it back to the car. Not ideal, but it was the only way I could think of getting back to the car quickly, as by now I just wanted to get home.

The following weekend, I had an event I wanted to attend.

So, putting a call out to our messenger group of friends who were also attending, I asked if I took my chair would someone be able to pick me up and one of my friends replied with yes her and her husband would.

On the evening of the event, my friends picked me and the chair up and took me to the event. It was a lifesaver as we had to queue to get in.

Once, in the event, my friend moved a chair out of the way, which meant I could stay in my chair throughout the night.

When I needed to go to the toilet, there was no shortage of people to take me, and the security guard let us use a different area away from the main crowd.

The best part was one of my best friends who got hold of the chair and took me to the dance floor with her, I always was the first up to dance pre MS and this really made me feel part of something again for the first time in a long time, I did have to put the brakes on though when someone started rocking me about, rocking makes me dizzy and I didn’t fancy throwing up on the dance floor.

Mobility Scooter

In January 2019, it was getting nearer the start of the super league season and I didn’t want to spend all season asking someone to push my wheelchair so I could go to away games, so I made the decision to purchase a mobility scooter.

After looking at various different scooters, I chose the one I wanted, and the seller delivered it to me the following Sunday.

I had visions of how independent I could be with the scooter, loading it into the car and having the world back at my wheels.

Jeez, I really do need to learn to lower my expectations.

Never mind moving it in and out of the car, I couldn’t even get it in the bloody house.

Mum solved the getting it in and out of the house by enlisting her neighbour to install a ramp for me, which worked well, but it was still too heavy lifting it over the threshold onto the ramp.

It did have one advantage though as it got me through most of 2019 season’s Hull FC away games thanks to Acklams Coaches who picked me up at the top of my street and carried the scooter in the locker of the coach.

On a London bus on my mobility scooter, I am wearing a pink jacket and grey jeans

I soon realised though it was just too heavy and getting it in and out of the shed when I moved was just too much.

Plus the one time I had booked a taxi with it, it cost me an arm and a leg, so I decided it had to go.

Speedy Igo

Rachael sat in her electric wheelchair with a black dress and balck shoes

Once the decision was made: I needed to look at an electric folding wheelchair that could be transported in a normal taxi and also I could lift into the boot of a car.

Looking at some of the local mobility shops, I found what I wanted, but I had no idea how I was going to pay it.

I was currently waiting tribunal to appeal about my standard PIP award. So Motability was out of the question.

After speaking with friends, they suggested I start a Go Fund Me, which I did, and just as I got to £200 in donations, I received a tax rebate.

Because I was a still a little short, I started to look around for a reconditioned one and found one within 20 miles who would also take my scooter in part exchange, which meant I could meet the price.

You can read all about Speedy Igo here.

What is an ambulant wheelchair user?

I am an ambulant wheelchair user, my wheelchair enables me to attend events and carry on my life. Why would anyone begrudge me that? Share on X

So, the next time you see someone in an accessible parking bay get out of their car and get into a wheelchair, just for one second think how much it took them to do that, so they can still go out and do the things they want and need to.

Speedy Igo is my lifeline to the outside world, and for that, I am truly thankful. Share on X

Are you an ambulant wheelchair user? What has been your experience of others’ perceptions? Let me know in the comments and please share.

Rach!xx

Introducing Wheelie MS Advocate

October 8, 2024 Leave a Comment

Introducing Wheelie MS Advocate, I created Accessible Rach in 2019 when I found myself suddenly in an inaccessible world. The initial intention was to improve access for disabled people. However, it was also becoming much more than that. With the increase in social media output, there is a growing focus on the rights of disabled people and those living with long-term conditions.

I first dabbled with Wheelie MS Advocate on TikTok earlier in the year, as I wanted my account, although about political commentary, to become nonpartisan, which would enable me to keep all parties’ feet held to the fire.

I created Wheelie MS Advocate by playing with words that are close to what I wanted to achieve. I opened Canva, played around, and there it was.

Wheelie, I chose the name Wheelie because I am an ambulatory wheelchair user, the What is an Ambulant Wheelchair Post still has the highest views to this day.

MS, Multiple Sclerosis, because that where all this started, diagnosed with Primary Progressive MS in 2018.

Advocate, because my advocacy gives a voice to those individuals, communities, or specific groups affected by healthcare, social care, disability rights, welfare support and human rights, who may be unheard.

Each post, every interaction on social media can help spark conversations and inspire others to join the cause.

Living with an often debilitating condition means I am not always able to write blog posts. However, my intention is to share videos and my social media.

You can view links to the organisations I support here.

Changing Symptoms of MS

March 8, 2023 Leave a Comment

Press play to watch/listen to changing symptoms of MS or scroll to continue reading.

Recently, I received an invitation to be a panellist on a webinar sharing my lived experience of the changing symptoms of multiple sclerosis.

What is multiple sclerosis?

Below is from the MS Society’s website and is there information the MS nurses provide on the helpline?

Multiple sclerosis (MS) is a condition that affects your brain and spinal cord. Damage to the myelin coating that protects your nerves occurs in MS. This causes a range of symptoms, like blurred vision and problems with how we move, think and feel.

There are three types of MS and out of these I live with Primary progressive.

The three are Relapsing Remitting, Secondary Progressive and Primary Progressive. You might also hear of Benign, however, most often this is stable Primary Progressive.

Relapsing and Remitting MS (RRMS)

In relapsing MS, people have distinct attacks of symptoms which then fade away either partially or completely. Symptoms you’ve had before might come back, or you might get new symptoms. Someone can sometimes manage this with medication called DMTs, which can reverse symptoms though not always treat them completely.

Secondary Progressive MS (SPMS)

Secondary progressive MS (SPMS) is a stage of MS which comes after relapsing remitting MS for many people. With this type of MS, your disability gets steadily worse. You’re no longer likely to have relapses when your symptoms get worse, but then get better.

Primary Progressive MS (PPMS)

Primary progressive MS (PPMS) is called this because from the first, or primary, symptoms it’s progressive. It’s usually diagnosed in people in their 40s.

Early symptoms are often subtle, like problems with walking, which develop. There will usually be few or no relapses with PPMS. Instead, disability will accumulate. There can also be long periods where symptoms seem to stay level.

People with primary progressive MS can experience many of the same symptoms as those with relapsing, remitting MS.

Changing symptoms

Have you ever tried to explain your MS symptoms to anyone? I mean really dig deep into how your MS affects you?

It starts off with a tree trunk and grows from there. At, the top of the tree trunk for me is fatigue and then the branches start

Orange background with outline of a tree in blue @MyLivingWithMS and Tree of MS below the branches are the words from the left, Memory Loss, Lhermittes Sign, IBS, Emotional Issues, Tremors, Balance Issues, Insomnia, Cognitive Issues, Pain, Lesions, Sensitivities, Spasticity, Mobility, Speech, Eyesight, MS Hug and Urine Retention

Even though I only received my official diagnosis in 2018, there are times I can go back to my early 40s and find some of the early symptoms I now live with today.

Fatigue creates so many of my symptoms and still catches me without warning today. Prior to 2018, the falling asleep issue happened many times. I thought I was “just tired”; however I often wonder if I had managed those times better. Perhaps I might not be so far on now.

Symptoms change gradually for me, so it’s harder to detect, although the deconditioning which took place throughout the pandemic, I don’t think I will ever get back.

My wheelchair, which was once an aid to preserve my energy, is now my only way of having a social life.

It depends on what the symptom is, the most worrying is MS Hug which I have had a few times now and it can go as quickly as it starts. I can only describe it as a constricting feeling in my chest, often only one side, but front and back, it can spread to the centre too though which immediately puts me in to heart attack thoughts and I have even had a blue light ambulance for it in the past.

To understand MS Hug, you need to understand what happens to my nerves which cause the muscles to in effect spasm constantly. What is called a myelin sheath covers our nerves, protecting them from exposure. In multiple sclerosis, the myelin sheath gets damaged and exposes the nerves, so when those nerves get exposed, there is nothing to stop the reaction.

It’s important to alert someone in your medical team as it isn’t always MS related and this needs ruling out quickly. I feel very fortunate to have a good relationship with both my GP and my MS nurse, which means as soon as I recognise a change or a symptom I haven’t had before I speak to my GP and follow up with my MS nurse.

When my MS hug starts, it does still panic me a little because of whereabouts it is in my chest. I feel the pain and the “hug”.

I have to manage the changes caused by my progressive MS.

In the days where they are at their worst, I rest up with a podcast/Netflix and say No to others until I manage the symptom.

How do you manage your changing symptoms?

24 Hours in everyone’s day

February 20, 2023 Leave a Comment

Press play to watch/listen to 24 hours in everyone’s day or scroll to continue reading.

This time last year Molly Mae came under attack for stating that there are 24 hours in everybody’s day. She was referring to the fact that she’s the creative artistic director at Pretty Little Thing; I believe.

Who believes if you want something enough, you can achieve it?

Grey background, newspaper print top right corner, cream rectangle in the centre with hessian cloth surround test "If you want something enough you can achieve it"

However, how productive can you be through those hours?

I’ll put some context behind this because at the moment I am kind of thinking about getting back into working or freelancing. I haven’t decided; it is all still pretty much in the up in the air but I realised I do an awful lot of volunteering and support for different organisations and perhaps I require to be paid.

Now the issue I have is pulling a CV together. I haven’t had a CV for a long time and now 56 years old a vast working history and a very varied skill set which I didn’t realise until I started writing it down.

A brief history of my working life has been predominantly admin based, project management, facilities management, customer, services management, team leader.

Those who are regular readers will know in 2018 I left work following my diagnosis with MS.

I had very little understanding of what adjustments I could benefit from as a person living with a disability.

“If you didn’t have MS, we wouldn’t be agreeing to this decision”. Were the words from my senior manager when I agreed to take voluntary redundancy.

Pinky purple background with a speech bubble in white text "If you didn't have MS we wouldn't be agreeing to this decision

Which? left me feeling like my working life was probably over as I knew it.

I suppose the thing that I’m talking about here, are my skills over the years transferable? The main areas I contribute to nowadays are coproduction, sharing my lived experience, creating content for social media, writing for difference publication, whether that be mainstream or bespoke, even speaker on behalf of the End Social Care Disgrace, campaign for a National Care, support and Independent living service.

Representative on diversity and inclusion boards, for regional TV news and a local theatre company.

However, back to Molly Mae and 24 hours in everybody’s day.

During my 24 hours, I would travel from site to site, attending meetings with contractors, customers, senior management, health and safety and also managing the team of staff across two sites.

My working day was 7:30 till finish most days. If I had been out during the day then I would probably be still do dealing with emails till 10:00 o’clock at night and then back up the next morning to do all over again.

We can hazard a guess out of those hours. How many would have been productive? I we are honest, few.

Much to my detriment now and I’ve since found out therefore my 24 hours in the day are not the same as they were five years ago probably because that’s when I was really struggling for a year before I even went off sick to be fair.

I was also fit or at least able to walk my dog and swimming three times a week.

Until it got hard to get up in the morning and get out the door, sometimes, it would take me 2 hours to get ready, and for my faculties to work like hearing and seeing etc.,

Now I find hard to accept how much of a struggle it would be to travel to work and back every day.

On a night out last week, the first in some time, it was tough getting about. I haven’t been in my wheelchair since last year, so it was strange suddenly being back at the level of people’s backsides.

It brought me back down to earth with a bang when I got it ready to use, cleaning it and making sure I charged the batteries. Then the arrangement of transporting it, getting to the event, and back home again.

The point I am trying to make here is that for me to go out for one night took a lot of organising and support.

I can’t do any of this without friends and family but for me to consider going out the house early to work for even two or three times a week is too much I just I just won’t be able to do it and that’s not being defeatist because I’m not defeatist at all that is just honesty and I’m being realistic.

There has got to be another way. As I spend my day in meetings, taking part in focus groups, creating social media content from the comfort of my home.

If the pandemic taught us anything, it taught us that with the right support from employers, we can be just, if not more productive from home.

Getting back to the same 24 hours in a day we have there is 24 hours in a day but my 24 hours look so different to what they did five years ago I want to look at it now but just doing the odd hour here and there supporting charities writing articles I’m doing it in my own time and if I need to sleep I sleep.

I’m now more productive, than ever, instead of sitting in endless traffic jams, moving about from site to site and then catching up with admin late into the night, I am managing my time much better, while ensuring I keep my wellbeing and needs in check.

After speaking to a good friend yesterday I’ve looked and monitor what my 24 hours looks like for a week, it’s interesting because I keep getting profile matches on LinkedIn for jobs which I don’t even look at, I just think that’s my old life, but, does it have to be?

Take a deep breath and try all over again. I’m not done yet.

Greyscale background with waves text "Take a deep breath and try all over again I'm not done yet.

I’ll come back to this an update on what about 24 hours in a day looks like over seven days.

The Relief of an MS Diagnosis

December 10, 2021 6 Comments

#Ad #Sponsored – This article originally appeared on MyMSTeam (come and join my team) here as part of a Paid Partnership.

Press play to watch The Relief of an MS Diagnosis or scroll to continue reading.

Being diagnosed with primary progressive multiple sclerosis (PPMS) came as both a shock and a relief to me. I know that the “relief” part may not make sense to people who haven’t been through the process, but for years, I was wondering why I had certain symptoms, with no answers.

When I got the diagnosis, my first thought was, “Right, this is it. Now I’ve got a name for it.” I wouldn’t necessarily say I was pleased to have a name to go with the symptoms, but I was relieved, because I knew there was something wrong with me, and I didn’t feel like medical professionals had been taking me seriously.

I really had to fight to get through the system, because my general practitioners were ignoring me for so long. So finally knowing that I had PPMS, which came along with lesions on my brain and spine, actually allowed me to breathe a sigh of relief that this finally had a name, that I wasn’t going to have to deal with the diagnosis process anymore — and that I was going to start fighting it right away.

One of the biggest challenges of MS is that it’s an invisible disease — people can’t tell that I have it just from looking at me. I’ve gotten so much flack in the past for using wheelchairs and parking in handicapped spaces, and I know other people face even worse issues than I do because we look “healthy.”

Although living with PPMS has caused me to face innumerable challenges — including losing my career and having to move from a home I loved — it has also given me a new outlook and perspective on everything. I hope anyone facing a new diagnosis of MS gets the answers they need as they deal with this disease and that they have a close network of friends and family to help them through it.

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My Perspective articles discuss multiple sclerosis from a specific point of view. My Perspective articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.