The disappearance of the tremor – When the treatment is working but you can’t enjoy it

Invisible disabilities are disabilities that are not immediately apparent. For instance, some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contact lenses. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Most people with RSI move in a ‘normal’ and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports; yet those patients can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands. Non-blind people with the circadian rhythm disorder “non-24” are as a rule unemployable and there are no visible signs of that.

Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.[1]

via Wikipedia

I really dislike the term “Invisible” when referring to disability or illness. As real as it is, it feels like a farce for me to call my disabilities and illnesses invisible just because other people cannot identify the symptoms. The very real and disabling symptoms.

Just because you can’t see it, doesn’t mean it isn’t visible. I can see it. I can feel it. I am the one having my life interrupted by it. Yet so many people like me are treated like hypochondriacs, scammers and weirdos because we have assistive technologies, disability parking permits and are placed on welfare payments because pushing us not just to find work, but to be employable is detrimental to our ongoing health.

Even when I’m doing “well” I still have symptoms, they’re just not as obvious as when I’m not doing well. The worst part is, that when I am doing well I feel like I should enjoy it, or take advantage and live life a little more on the wild side, you know, like going to a doctor’s appointment on the train in the city all by myself.

I recently had a visit to the wizard (neurologist – you know how the scarecrow went to the wizard to ask him for a brain… yeah, that), and he felt we’d found a successful combination of medications so, next experiment was to increase the dose.

It was only a few days before I went from needing to be rolled over and helped out of bed to leaping over tall buildings in a single bound. Okay so I’m not quite leaping but when these things are successful it does make you experience a kind of superhero phenomenon. Anyone who has been treated with steroids for a respiratory illness or infection will totally understand what I mean.

My hands haven’t been this steady for almost 10 years. I have no tremor. None. Well until the medication wears off but that has been drastically reduced as well by the new medication regime, however there are still times when I’m late with a dose or I miss it altogether and then boom you’re shaking all over and asking why you keep doing this to yourself. It just becomes tiring searching for water and popping pills every couple of hours. Seems so effortless to people who don’t have to do it but after 5 years of it 365 days a week it is one of the most prosaic activity in your life.

Yet here I am rejoicing in the miracle of modern medicine and I’m afraid to enjoy it. I’ve been through this before. When I went from waiting for diagnosis to successful treatment and my life and capability improved dramatically, and still to this day the accusations of faking it plague me. People who normally don’t give you the time of day, who just look at you as you scoot past on your mobility device as though you’re the most pathetic thing they’ve ever seen, see you without the mobility device and suddenly WHOA! See I knew she was faking it.

No, you’re not allowed to have a good day. You’re not allowed to have success with treatment. When you do, they expect that you can be like that all the time and when you’re not, well, you’re just not trying hard enough.

People see me and say this is the best they’ve seen me in years. Which feels great. For a moment. Then that moment fades because I know I’m on borrowed time. The treatment is not permanent. Parkinson’s Disease is a progressive and degenerative condition. I will get worse again. The dose will no longer be enough, the type of medication will no longer be effective and I will go back to the hour by hour battle to overcome the wretched disease long enough just to cook a meal, or do a load of washing.

I know what I have to look forward to. It’s not exciting. It’s flipping scary. So why do I not feel like I have the right to enjoy whatever the period of good time it is that I’ve been blessed with, without facing the accusations and assumptions? There’s no way of knowing how long this could last, but some people will expect that while I have this physical capacity I should be “earning my keep” and get a job. Make a “real” contribution to society. I did try that in my first early honeymoon period but the added stress caused me to deteriorate so quickly it was only a few months and I had to quit… and that was only working part time.

I haven’t improved on every level though. Physically I feel the improvement. Cognitively I still struggle. I still do random things like put the kettle in the fridge then wonder an hour later where my cup of tea is that I didn’t actually make. Probably the number one reason why I’m not allowed to drive.

It shouldn’t have to be like this. We shouldn’t have to feel obligated to have symptoms even when we don’t have them. Lets rebel against the expectations of society! Stop explaining ourselves and just respond by asking them how long they’ve been living with {Insert relevant disease/illness/disability here}. Oh, you don’t have it? Great then you can’t really tell me what I should expect to be doing under my circumstances…. Kindly fuck off and have a great day.

Live like someone left the gate open!
Live like someone left the gate open!

Why PWDs are fed up with asking for the inclusion you take for granted

In our modern world building so large around us, to many it may seem like all this disability inclusion and access requirements “stuff” is quite new. The slogan for this year’s Disability Action Week is about Inclusion (due to it being the year of the Paralympics the focus is on inclusion in sport mostly). For those, even as new to the game of advocacy as myself, promoting Inclusion of people with disabilities can seem as new as teaching grandma how to use a smartphone. Truth is, we should, as a whole society, be ashamed of the fact that we are still having to be reminded, educated or told, to be inclusive.

It’s 2016 and we are STILL asking for people with disabilities to be included in every day activities in the community that everyone else takes for granted. Things as simple as travelling the footpath to go to the local shop.

Inclusion won’t happen until it starts happening without us having to ask for it. It certainly won’t happen until attitudes change to stop thinking that inclusion is a burden.

The Disability Access to Premises Standards might only be 6 years old but it was a long time coming even back in 2010 and we still have a long way to go in getting it right. The Disability Discrimination Act 1992 is not 24 years old in Australia and STILL, we have cases every day of discrimination against people with disabilities in such common setting.

Just last week a large chain supermarket manager in Fern Tree Gully Victoria was approached by a member of the community about the blocking of the shared space beside a disability parking bay. The manager’s response was that they have always used that space for their fundraising stalls and if the shared space was an issue, he would have it removed.

Photo shows a marquee and tables in the shared space beside a disability parking bay. This space allows people to get their wheelchair or other devices beside the car. The shared space is marked with diagonal yellow lines. It is not a parking space. Under Australian Road Rule legislation it is classed as a painted island.
Photo shows a marquee and tables in the shared space beside a disability parking bay. This space allows people to get their wheelchair or other devices beside the car.
The shared space is marked with diagonal yellow lines. It is not a parking space. Under Australian Road Rule legislation it is classed as a painted island.

Not only will the car park no longer comply to the Access to Premises Standards 2010 but he has effectively just told every person with a disability that he doesn’t care if you want to shop at that store, he’s not going to make it possible for you. In fact, he’s intending on doing the opposite. There was no possible way he could have utilised any of the other 90 or so regular parking spaces, it had to be in the disability parking area so hence people with disabilities have to go.

All the great legal minds in the country will tell me (what I already know) that it’s a case of indirect discrimination. There is a legal process in which we can deal with this. It is also long, arduous and can be quite costly. Naturally as you’d expect, Head Office management of this large supermarket chain dealt with the complaint accordingly and the issue has been rectified (so we are told). When there isn’t a higher power at that level to deal with the complaint we’re left with nothing but the legal process and quite frankly I think that’s a bit shit.

We’re not asking for special treatment here. We’re asking for something quite simple. Inclusion.

To be included we sometimes require alteration, adjustment or addition to something that is existing. In this case, it is access to the building via parking.

For someone with out a mobility impairment, they will just drive on in, hop out of their car and go do their shopping. For the rest of us with disability parking permits who rely on those very well set out spaced marked for disability permit holders so that we may then hop out of the car into our wheeled devices or whatever assistive device we may use and THEN we go do our shopping. For many of use our adjustments don’t stop there but that’s the basic. We asked for an anti discrimination act and finally got it in 1992. We asked for minimum standards for access to premises and finally got it in 2010. Why are we still having to then ask for these things that have already been legislated?

Before my time as a person with a disability, there were many others like me. Some of them still advocating today, some, worn out from the years of repetition are happy to let people like me continue the campaign and I can assure you after only 4 years of this crap it does wear you out.

We get tired of asking you not to park your car on the footpath because gutters are not designed for wheelchairs to travel across. We’re tired of asking you to install eftpos facilities that can be used at wheelchair height. We’re tired of asking for ramps to be placed near the access. Most of all we’re tired of having to ask to be included.

I write this article today with great disappointment. I was promised so many things this year for Disability Action Week by various sectors, agencies and businesses. Nothing happened. It seems that unless I am still there driving it, constantly annoying the people in charge to make sure these things happen, it just doesn’t happen.

Just do a search for Disability Action Week events here in Queensland and I challenge you to find an event or promotion run by the private sector. Find me something that isn’t by people with disabilities, a government agency or non profit organisation so that I can thank them for being considerate enough to act on inclusion without having to be asked or have it driven by us.

If you ever find yourself wondering why someone with a disability is cranky it’s probably because they’re tired. Tired of having to ask to be included in what everyone else just takes for granted. Life.

Please stop telling me how I’m going to die.

Imagine if every time you spoke about an event in your life, someone told you how you were going to die? They can totally relate to your situation because they know someone or knew someone in that exact a similar situation, so they feel the need to detail how your demise will be.

You got your first car? My uncle had a car once. He died in a fiery crash when he was hit by a speeding driver on the highway. Terrible terrible thing to happen. Horrible way to die.

You’re pregnant? My great great grandmother had three kids but she died in childbirth on the fourth. Dreadful thing to happen. So tragic.

You got the flu? I watched my sister go through the flu. Slowly and painfully it ate away at her. She was a brilliant teacher with a great career until the suffered for years with the flu and then she finally died. It was so hard to watch.

This is pretty much what happens when people who have just met me, even complete strangers, discover I have Parkinson’s Disease.

I may reveal it because it is relevant to the meeting, or because I feel the need to explain my symptoms. I may reveal it because I’m asked why I’m on a mobility scooter when I’m only 40, or because for the 57th time this week I’ve been asked if I’ve hurt my leg because I walk funny. I try to keep it to a pretty simple I have Parkinson’s Disease. Sometimes, depending on the situation I may need to elaborate…. “which affects my balance” or “it makes my muscles rigid and so it’s difficult to walk at times”.

It’s met with a variance of responses:
But you’re so young!
How long have you had it?
Isn’t that what that actor from Back To The Future had?

Lately though I seem to be coming into contact with more people who knew someone who had it and they have their story to tell about it. It’s not a story that ends well though and it’s a rather awkward conversation for me to have. They basically detail their pain, the person’s pain and how I’m going to die.

On the most recent account of it, I ended up cutting the conversation short because quite frankly I was annoyed that in that particular situation I was forcing myself to nod in an understanding way and listen to someone recount something that was completely irrelevant to me and served me no purpose what so ever.

It was at my own front door. A charity collector (and my haven’t they changed from the old days where someone knocked on your door with a bucket and you scrounged around the house for change to drop in and they wished you a good day and left). He was collecting for a generic cancer charity and had his best friendly personality on trying to engage me with what a lovely complex I lived in before he launched into his well rehearsed speech about how many people are diagnosed each year blah blah rely on services not provided by government blah blah my important donation blah blah yeah look dude I’ll save you some energy and stop you right there.

At that very moment I was using all my energy just to stand at the door and stopping my over excited affection hungry dog from trying to get past. I am broke. Like when my pension lands in my bank it’s about two hours before I’m back to a bank balance of $2.11 kind of broke. No I’m not signing up with my credit card details to donate every month. If you had a bucket for coins I’d probably scrounge some together to throw in but since you don’t I promise you I buy daffodils and pink ribbons and cancer council sunscreen every year but I just don’t have the capacity to sign up to monthly contributions when I can barely pay my own rent.

He understands. He tells me it’s great that I support all the causes cos blah blah blah cancer bad blah blah blah have you known someone affected by cancer? Uh.. yeah. Yeah I have. Who, what type (why why must he know all these details… why am I still standing here being so damn polite when I could just slam the door and go take the planned nap he interrupted – damn me and my polite values). Mate, there’s a list. I know many many people who’ve both survived and died from many many cancers. It’s sad. Very sad.

Perhaps he felt like he hadn’t related to me enough to reach that KPI and commission he so very much needed. He just had to drag more out of me. He proceeded to detail the kinds of services those people would have used and how without said charity they’d have very little or no support. Mate, I know what it’s like. I have Parkinson’s Disease, believe me there’s stuff all support for people like me!

Crap. I wanted to kick myself. I wanted to kick the dog. I wanted to crawl into a ball on the lounge and die right there.

Oh! You have Parkinson’s! My grandfather had that. He was a brilliant man. He did blah blah blah for a living, designed blah blah….. it stole so much from him. He was just a mess in the end. I hated seeing him like that. Shaking so much he couldn’t even drink from a glass, not even able to walk himself to the bathroom. It dragged on for years before he finally died from it.

Well we don’t die FROM Parkinson’s but yeah, the complications from it can cause death.

It killed me to watch him like that. To see a man who was so brilliant deteriorate the way he did. Such a cruel and horrible disease. I have no doubt the expression on my face spoke volumes. OH!, but you you’re so young I’m sure you’ve got plenty of years ahead of you, ummmm, how is it affecting you? Are you doing okay?

Whah? I assured him I was fine but I wouldn’t be if I didn’t get myself down for my nap before the kids came home from school, wished him good luck in his endeavours and promptly closed the door. Which I should have done when I initially cut him off. I really didn’t need to be reminded of how my life will (most likely) end. How Parkinson’s Disease is going to already is, stealing away my life from me. My independence, my freedom, my fun, my youth, my dignity.

Yes, We are very aware that Parkinson’s is a cruel, relentless disease and that it will take away so much from us and yes we are well aware that our loved ones will have to watch this while it’s all happening to us, breaking their precious hearts while our courage, our stride, our resolve and eventually our bodies.

You don’t need to remind me.

If the only way you can relate to my situation is to tell me the bad stuff, it’s probably best to keep it to yourself. I don’t need you to detail how I’m going to die. I need support. I need to be able to access my community. I need to be allowed to be on disability support pension without being labelled a welfare burden. I need to know that I can still be bulk billed for the medical services that I depend on to survive. Most of all, I need to keep up the fight.

After all, when someone reveals their cancer diagnosis, that’s the first thing you tell them isn’t it? You can fight this. Not, you’re going to die crippled in palliative care with no hair on a morphine drip.

IMG_20160330_151258

Please stop telling me how I’m going to die.

I’m still young enough to go out and get hit by a bus tomorrow. Parkinson’s is not my death sentence. It’s my life sentence.

dead fairy friday

Mobility Scooters – To Regulate is not to Restrict

I knew when I shared the news article with the No Permit No Park crowd it would stir them up. I did it because I wanted to see what solutions people suggested to the issues of safety. Not much was offered other than people need to watch where they’re walking. Which I totally agree with, but there’s a whole lot more to community safety than just personal responsibility.

The issue was raised by a NSW Senator when his wife was bowled over by a large mobility scooter as she stepped out of a shop doorway. She was injured, he was angry and rightly so. The person who hit the woman was travelling far too close to the doorways to be safe. However this wasn’t what the Senator seemed to have issue with. It was the speed. At most on a flat surface it would have been below 12kms per hour depending on the model of the scooter, it’s age and the weight of the person riding on it. The Senator posed the argument that 12kms per hour is too fast and they need to be restricted. He’s right. If we’re talking about scooters being in crowds of pedestrians. What the Senator doesn’t understand is that mobility scooters are designed with adjustable speeds for a number of reasons and should the Senator ever find himself in the situation where he does have a mobility impairment and decides to acquire himself the independence of a mobility scooter then I’m certain he will appreciate this design feature. Until he tries it though he can’t speak for us.

Mobility aides whether powered or not need to meet Australian Standards to be saleable in Australia. The regulation on use however varies from state to state and this is where the biggest problems lie.

Registered Mobility Scooter
Registered Mobility Scooter

In Queensland for example, just like getting a disability parking permit, to have your powered mobility device registered for outdoor use in public areas, you need proof of mobility impairment from your treating physician. If you have a genuine need then you have no issue with this. You only need it once only if your disability is permanent. To legally use a powered mobility device on footpaths or roads in Qld it must be registered. Why? Well, just as disability accessible parking and disability accessible toilets are inviting to people because they’re “convenient”, it was found that mobility scooters in particular were a convenient way to get around without needing a licence to drive. This seemed to be especially appealing to certain members of society who had issues with retaining a driver’s licence, in particular for drink driving. After all how many mobility scooter riders do you ever see pulled over for an RBT? To keep the numbers regulated to the percentage of population with real mobility disabilities it was decided to regulate the use of these devices. Oh, did I mention registration is free? And comes with free CTP insurance?

That’s not to say that the regulation is optimal. As well as mobility scooters, Queensland law also requires powered wheelchairs to be registered for use outdoors also. I’ve had conversations with a number of users over the years and while I personally thought since registration is free and comes with free CTP why the hell would you not register it? However after comparing the differences between the two I completely understand their reasons for not complying with the registration requirement of their powered wheelchair and I totally support them. When you compare mobility scooters and powered wheelchairs there is a significant difference between the two. One is to make life easier and the other is to make life possible. If you ride a mobility scooter but do not use a wheelchair, chances are you can still walk enough to open a door or take yourself to the non accessible toilet and for that you should consider yourself pretty damn well blessed and you should absolutely not group wheelchair users into the same category.

Mobility Scooters are designed generally for outdoor use and have handle bars on a pillar for steering. Powered wheelchairs are designed for both indoor and outdoor use and are steered with one hand using a joystick. Power chairs are very manoeuvrable and easy to use indoors. Mobility scooters are often faced with difficulty manoeuvring in small areas. While modern designs of mobility scooters see them getting smaller and more convenient to use indoors they’re still not the option for those who need continual use of a wheeled device both inside and out. They’re in lesser numbers on our footpaths and even lesser seen on the road, the method of control is significantly different to that of a mobility scooter and just for that reason alone, shouldn’t be included in the requirement to register.

A shop front showing different styles of mobility scooters
A shop front showing different styles of mobility scooters

Mobility scooters on the other hand need regulation and I doubt it will be long before we see other states following Queensland’s lead.

On the subject of restriction though, well, how much more restricted do you want them to be?

There are size restrictions for using them on public transport. This is why I chose a mobility scooter that is smaller than the size of an average wheelchair. Many shopping centres and other indoor public environments also restrict sizes to ensure the comfort of all patrons. I know when I’m walking (shuffling) around, being surrounded by groups of large mobility scooters makes walking around safely somewhat difficult. I avoid walking around in car parks, so I’m not about to rush into an enclosed space with a bunch of kamikaze scooter riders.

Restricting use to driver’s licence holders though is just outrageously ridiculous. Being unfit to drive because my legs don’t work well enough and my upper limb use is restricted does not mean I am incapable of managing a mobility scooter. Two levers, back and forth make it pretty simple. If you can walk or cycle around the neighbourhood then you can manage a mobility scooter. When you apply for registration of your scooter one of the requirements are that your doctor needs to be of the belief that you’re capable of controlling one. The downside to this is that there is no updating of this once you’ve registered like there is with your licence once your doctor has diagnosed you with any illness that may affect your ability to drive (if they’re a decent doctor). Once you’re registered you’re registered. You just keep renewing it. Although I’d like to believe that if I reach the stage when I don’t have the capacity to realise I’m no longer safe on a scooter my family will be the first to act on it.

Speed restrictions are another question. Should the speed be restricted further than it is already. While most are limited in Australia to a brisk stroll to a jog, or 8 to 10kph some are sold that go up to 12kph. The design of mobility scooters is different do that of a powered wheelchair in that a scooter will pick up speed in excess of what it is powered to do if going down hill (isn’t gravity amazing!), while powered chairs (for the most) do not. The average walking speed is around 5kph. All motorised mobility devices have adjustable speed controls however very few have a monitor that allows you to see how fast you are going. While my CTM scooter is restricted to 8kph I’ve used my mobile phone GPS to detect the speed and hit just over 9kms going downhill. I know right! Speed demon I am. Point is I couldn’t tell how fast I was going. Luckily for me (and the people around me) I’m able to judge what is a safe speed around other people. Although I am known to become frustrated in shopping centres and speed on around people who shop in herds and use up the entire corridor.

The problem with speed restriction on these devices is that the terrain we travel on isn’t always forgiving and the motors being electric have no regulator to adapt for more power required like gears or a turbo booster on motor vehicles. Steep hills, ramps and soft ground such as grass or dirt (there isn’t always a footpath) all affect the optimum power of the device.

There’s no accounting for weight and I am sure that there has to be a difference even if small, in the power used when a person of 110kgs is travelling on the same device as someone of 50kgs. Nonetheless that’s not the main reason these devices are designed with enough power to reach these speeds. Crossing roads is one of our biggest challenges. I am eternally grateful to those who stop on the highway off ramp at North Lakes when I’m trying to cross because cars rarely see me and they just as rarely do the 40km speed limit on that section having just left a 100km stretch of road. When crossing the road is like playing a game of Frogger (you Sega kids from the 80’s will remember that one) you want to know you have a little bit of power behind you.

A mobility scooter is lying on it's side under the front bumper of a car after being in a collision.
A mobility scooter is lying on it’s side under the front bumper of a car after being in a collision.

There’s nothing to be gained by the disability community by restricting our inclusion and access any further than it already is. Even though the non disabled might not care all that much about it now, well, there’s every chance they could end up joining us one day. Then they may regret those restrictions they put on their future lives.

Regulation however needs to be carefully managed so as not to over regulate something that doesn’t need to be, just creating more red tape and paperwork and of course, cost to the government. The most important thing about designing regulation is that it should be based on input and feedback from those who will be regulated; the disability community. It doesn’t need to be a 258 page document. Just basic commonsense and benefit for those under the regulation.

  • Free CTP with the Free registration is a great upside for mobility scooter users but as the incidences for powered wheelchairs are 1 to 100 for mobility scooters the inclusion of them in compulsory registration is just not feasible.
  • If speeds are going to be limited then all devices should be fitted with a speedometer. This needs to be included in the Australian Standards so that the devices aren’t sold without them or at least an after market accessory is available.
  • Better access to Occupational Therapists for those seeking to acquire the use of a powered mobility device, for professional advice not just sales advice.
  • Better access to learning support for those new to the device. It’s great to get a flyer with information but practical demonstration, tricks and tips from those with experience makes learning far easier and gives the user confidence.
  • Most of all… better damn footpaths. If paths were clear, wide and undamaged then perhaps riders wouldn’t be forced to ride so close to doorways.

If you think mobility scooter riders are a danger you’ve clearly never been to a Boxing Day Sale.

A row of mobility scooter riders one riding behind the other
A row of mobility scooter riders one riding behind the other

Epilogue:
Australian Road Rules
The Australian Road Rules state that a person using a mobility scooter is classed as a pedestrian if the maximum speed on level ground cannot exceed 10 km/h. As such the rider:
must observe the same road rules that apply to pedestrians
must not obstruct the path of any driver or other road user
must not travel along a road if there is a footpath or nature strip adjacent to the road, unless it is impracticable to travel on the footpath or nature strip
if travelling along a road must:
– keep as far to the side of the road as possible
– travel facing the approaching traffic unless it is not practicable to do so
can use shared paths, off-road bike paths and shopping malls
does not need to have a driver’s licence.

Meet Eleanor – She changed my life

Living with Parkinson’s as a young person is really tough. People don’t understand it when you say you have Parkinson’s because they only expect old people to

Image: Me and my cat Princess in bed resting.
Image: Me and my cat Princess in bed resting.

get it. You become an old person before you’re ready for it because of what it does to your body. For around ten years now Parkinson’s Disease has been taking things from my life. My lifestyle. My hobbies. My independence. At times even my dignity.

My mobility has suffered so much as my condition continues to deteriorate and it frustrates me no end. Not just because there are so many things as a young parent that I HAVE to do, but also there is so much I want to do and my mind goes crazy being held hostage by an exhausted body that just doesn’t have the will to go any further. Just a trip to do the grocery shopping would result in me coming home for a three hour nap and still feeling like I was recovering from a marathon.

Despite using a wheelchair for long days, big events and times when I just wasn’t safe to walk it was still a struggle. Then the final axe fell when the neurologist said, “I think it’s time we reassessed your fitness to drive.” I gave him the information he needed to make that call. I knew it was time. There were just moments in the car that made me feel like I should not be behind the wheel. I know it wasn’t safe. Not being able to drive is like taking the last square of chocolate from me. It was all I had left to hang on to my independence and my purpose. Without being able to choose when I want to pop to the shops or go to an event without having to rely on anyone else I feel like a burden. Without being able to drive my kid the 3kms up the hill to school and pick him up I loose my sense of purpose.

In my usual spirit of not being ready to lay down and die just yet, I got onto Gumtree and for a few weeks I hunted and researched mobility scooters. I don’t qualify for funding from the government so I had to rely on family assistance and saving but I found one that would suit for the time being that I could afford and I tell you it has changed my life.

 

This is Eleanor. I named her after the Mustang from Gone in 60 Seconds (one of my favourite movies ever) because to me she’s the elusive key to breaking the eleanorcurse and getting my life back. I’ve only had her a few weeks but already she’s made such a difference. I can go shopping and still come home and help put the groceries away. I can go to the shops and check the post office box without having to wait for someone to come home from work and then disturb their rest time to ask them to take me. I can “stroll” around the shopping centre for as long as I like without having to buy a beverage I won’t drink just so I can sit somewhere to rest. I have more energy on the days that I would normally quit due to exhaustion. People, particularly elderly ladies, have stopped me to talk to me about her and ask how hard it is to handle etc and they become inspired to want to give it a go and get their lives back. I know I get some odd looks because people don’t expect to see a young woman cruising around on a mobility scooter but I plan on making it worth while. I’m going to pimp my ride with the help of my two boys and really make her stand out with my personality.

Eleanor has given me my freedom.

We’re also moving house. Closer to my son’s school so that he can ride a shorter distance and closer to public transport so that I can still maintain somewhat of a social life – even if I am rather anti social at times.

If you’re in my position and hesitating I say to you, STOP THAT. Just do it. Don’t worry about what other people might say or think. Take your life back.

Of course this also means I am discovering more about our inaccessible world and yes, you guessed it, that’s the newest challenge I’m taking on. But more about that some other time.

Keep smiling
Friday