Gadgets I use to make my disabled life easier

I have got Charcot-Marie-Tooth disease. Its a disease that affects the peripheral nerves, it is hereditary and it makes me weak and wobbly and frequently tired.

Because of this disability I use a fair few 'aids' to help me live normally. I don't need a wheelchair (yet!) but I do use a stick for balance, especially on uneven ground or in busy places where people might bump against me. I don't want a repeat of the falling down the escalator on the London Underground experience! I have a few sticks and I'm thinking of getting another. I like them fancy and the collapsible ones are handy. There always seems to be a good selection on Ebay. 

In this post I thought I would share a few of the things I use to make life easier. There are Amazon affiliate links, that doesn't cost you anything to use but Amazon give me a tiny (and I mean tiny!) percentage of the profits of any sales from them. 

To help me dress in the morning, as I have very poor fine motor control in my hands and fingers, I use a sort of modern day button hook. To say it's been a life changer is an understatement! For years I relied on my husband to button up the duvet cover and to do up the small buttons on my shirts. I had actually stopped buying clothes with buttons until I bought this gadget! It also helps with fiddly zips, as long as they have a hole in them, those annoying 'cute' zip pulls you often see on ladies clothes that have no hole in are a pain! (since buying this gadget I have also purchased some beautiful vintage button hooks, once needed for fancy lady's boots and gloves they are excellent for zips and pretty as well!)

 You know how in the movies when the hero gives a necklace to his lady love and he just reaches round behind her neck and 'click' the clasp is fixed! Or the lady removes her jewellery at the end of the day, just a quick movement under her hair and the necklace clasp is open... well I have never been able to do that, and now I struggle even using a mirror and doing it where I can see! So I bought some magnetic necklace clasps, I worried they would be weak and fall open but they are amazing and now I wouldn't be without them. 

 I can't open jars because of weakness, there are lots of things o the market to help to open jars, gadgets that release the air pressure, twist grips. rubber sheets, but I now use a tiny robot. My electric jar opener is just the best thing! 

 I am also the proud owner of a granny grabber. I'm fairly sure that isn't it's real name, but standing on a chair when you are wobbly is pretty risky, so I use a long handled grabber when I can.

When walking upstairs I need to hold onto the rail because of poor balance. This means carrying anything up or downstairs is difficult, small items I can put in a stair basket but cups of tea? I can't use a regular tray one handed, but this modern take on the butler tray is perfect and I use it a lot. I feel like it would be useful to anyone really, allowing you to open doors etc and giving you one free hand while you move things about. 

 Modern cans and tins no longer need can openers (though if they did there is an electric option) but eve a ring pull is tricky when your hands are like mine. So I have a small gadget to pop the pull up and then to pull off the lid. 

 Life is not all doom and gloom of course and I enjoy a tipple. I love to drink cava (Spanish champagne) and of course the cork can be a struggle. You can buy a proper thing to loosen the cork I think, but I use a set of antique nutcrackers, just because I can. 

 At our entrance way is a boot remover, I am finding it increasingly tricky to bend down and VERY tricky to have the strength to remove a book without hep. Ours is a cast iron boot beetle. 

 So there are some of my useful things, and yes I notice being disabled is expensive. If I find any more useful gadgets I will let you know and you can share any you use in the comments.

Living with an invisible illness

Charcot-Marie-Tooth can be an invisible illness. It isn't always. Some people with Charcot-Marie-Tooth are in wheelchairs or wear leg braces/supports or use walking aids. Many of us have clawed toes and fingers. Some have curved spines.

But it can be invisible and in the early stages it often is. Charcot-Marie-Tooth, named for the three Drs that discovered and diagnosed it, is a type of (oddly common) neuropathy that affects both motor and sensory nerves. It is usually inherited. In fact, it's other name is Hereditary motor and sensory neuropathy.

I was diagnosed with CMT in my 30s after years of being bad at sport and even bad at walking! I was teased as a teen and have struggled in some jobs due to my poor motor skills (very weak hands and clawed fingers). It was a relief to be diagnosed.

Knowing why you can't do what everyone else can is actually very liberating. I can tease myself now, shout "oh you silly helpless cripple!" when I can't remove the bank card from the ATM (no pincer grip with my fingers), and I can use a walking stick on days I feel especially wobbly.

And that's what I wanted to tell you. You might see people park in a disabled bay, with a blue badge of course (I don't have one yet, I may reapply, but last time I tried I was deemed fit enough to walk far enough to get by without one), you might see them get out of the car and pop into a shop, they don't look very disabled do they?

You might see an attractive young lady or handsome young guy wait at the foot of a flight of stairs because both sides of the stairs have people coming down holding the handrail, why don't they walk up the centre? They look young and fit. (I cannot walk up or down a flight of stairs without holding either the wall or a handrail, my balance is simply too poor - I once fell down an escalator on the London underground due to the crowds and people pushing)

You might see someone leave the pub and stumble into the gutter, are they drunk? (TBF they might have CMT and be drunk - *me)

You might see someone in a wheelchair get up and walk, where there are a few steps, to help their mate who has to get the chair down the steps. Has there been a miracle?

Maybe a wheelchair user gets up to reach up to a high shelf in a supermarket, are they playing a prank?

Maybe a women is crying because she can't open a water bottle, what's wrong with her?

Charcot-Marie-Tooth (and many other illnesses) can be hidden,they are still there, lurking beneath the surface, we don't want to be ill, we don't want to be weak. We just want to be able to do the things that able bodied people do every day with out thinking about it.

So this September (and always) think about invisible disabilities, but particularly Charcot-Marie-Tooth as September is awareness month. Try and remember that when a person that appears visibly fit asks to take the lift rather than the stairs, they might not be 'lazy' (if I had a £ for every time work colleagues have joked that I'm lazy when I take the lift I'd have £28) they might need to use the lift. When they take an age to descend a staircase, clinging to the handrail there could be a reason beyond what you can see.

When a grown up asks you to open their Pepsi, think of the embarrassment they already feel, the bravery it has taken to ask a stranger, they don't need to be laughed at or called weak (all of this especially important to tell teens as they start school or college too - CMT gets worse as you age but embarrassment at asking for help from peers increases). Lend a hand when you can.

Be patient, be considerate, be kind.

Image Copyright: designer491 / 123RF Stock Photo and nd3000 / 123RF Stock Photo

What I wanted most as a child

Written for the Post40Bloggers blog prompt Number 82

Something you desperately wanted when you were a child

When I was younger I was terrible at PE. I mean terrible. I had no balance, I was slow; running seemed so easy for everyone else, they made it look simple and fun, they didn't get left behind or fall over and graze their knees. But from about the age that 'Sports' Day' became a huge memory in  my childhood (aged about 9 maybe?) PE day became a day of horror.

I would try all manner of feeble excuses to not take part, faking coughs, sprained ankles, headaches. I would take an age to get changed, volunteer for anything that needed doing that didn't involve actual sport. Fetching the basket balls, handing out and collecting the tabards, setting out the cones...

But Sports' Day itself was a nightmare. Even back in the 70s schools tried to be inclusive, but I didn't qualify to be in any 'proper' races, mine was the ignominy of the 'special' races, full of fat children, wheezing breathless asthma sufferers, and wobbly weak kids, kids like me. And even in these races I did not surge to victory, we stumbled and gasped our way down the 100 yard track like unenthusiastic hamsters, passing the finishing line with the simple joy that it was all over for another year. Nearby the rest of the school waited watching, I imagined them hating us all for being so pathetic.

I didn't join in running games in the playground, I was dreadful at catching a ball. When I turned 12 I briefly enjoyed cross country running, mainly as we all departed at various times, spaced out, there was no way to see how badly you were doing (until arriving back last after the showers were finished and everyone was already in Maths) and you could jog/stumble along the paths in the woodland as slowly as you liked, with no one judging you.(except the aforementioned maths teacher!)

I dabbled with throwing the javelin at age 13 and no one was killed, so I'll take that as a success, but despite my height and long arms I didn't seem to have the strength to fling the javelin very far.

As soon as I was in the sixth form I eschewed sport altogether. Finally I had the power to control my own free time at school and I chose chess. Again I was with the nerds and the geeks, but I was used to it by now, they were my people.

So where is this post going? with its whining and self pity? Well at age 34 I was diagnosed with Charcot-Marie-Tooth (Hereditary Motor and Sensory Neuropathy) and suddenly it all made sense! The weakness, the bad balance, the stumble, the tripping due to foot drop. I wasn't dreadful at sport! I was not bad at all considering I was disabled!

So this post is a reminder to myself. What I desperately wanted as a child was to fit in, to be sporty, to be one of the runners, to be a winner on sports day. But I'd have settled for knowing why, knowing why I was last.

My happiness non-negotiables

I’ve been nominated by Mama Bear over at ObliviouslyAwesome to post about my happiness non-negotiables.
These are the things that you just can’t live without in your day-to-day life, the things that, without them, you just can’t be happy.

Initially I though "well that will be simple, I'm a happy soul, I should be able to rattle off a few things no problem" but then I saw that family was sort of assumed and not really allowed to be in the running, which is a shame as Darling Teen Daughter makes me not only happy, but on occasion even makes me cry actual tears of laughter, she always has done, she's hilarious. And then there is dear husband's beard...but  I'm losing the thread...I was wondering what I would add, books? music? TV? birdsong? squirrels? the feel of a raw egg yolk in your hand? ... none seemed quite 'me', I had a longer muse... and so here they are, my happy things.

Festivals and Camping

Being in a field in my tent, near my tent, with a fry up or beer or gin in a tin...I love festivals and camping so much I have a whole 2nd blog devoted to it! The feel of a lack of urgency about life, no need for clocks or schedules, no need to wash (for a few days - I'm not that scuzzy) , the joy of drinking as and when the mood takes, just the general freedom...so yes, getting into the wild or into a festival full of folk dressed up, dancing to unknown bands in a field these are my extreme happy things. I hope heaven is just one huge music festival, with camping, no rain, and free beer and bacon.

Cava

I love a glass of bubbly. I am rarely flush enough to afford champagne and prosecco isn't made in the same way, so I opt for the slightly cheaper version, sparkling Spanish wine made in the champagne method. I like to start each Sunday with a glass (or two) while peeling the potatoes for the roast dinner later. And a Friday and Saturday night are not complete without a large glass of fizz to hand. A wine that is easy to drink, makes me light headed though not properly 'drunk' and never gives me a headache, a wine that can be as cheap as £4 a bottle, that is a definite 'happy'. (reading this back I realise I sound like an alcoholic....I could give it up; if I wanted to)

My Bed

I am always tired. Partly due to having Charcot-Marie-Tooth, but mainly just because I'm me I suspect. I can sleep for England. I usually go to bed at 10pm as I get up at 5.30am for work, but at weekends I have no trouble sleeping 12 hours straight, and when camping I love to snooze in in the morning, no hurry, just laying half awake, half dreaming, eyes shut, listening to whatever is going on, feeling the soft warmth of the bed. Snuggly. I love my bed.

Dogs

We used to have two border terriers, they were mine for over 13 years but they are now chasing ghostly rabbits over the rainbow bridge (they are dead! Enough with the euphemisms) So we currently have no dogs, but a dog makes a house a muddy, hairy, messy home and I do love dogs,. Cats are OK, and I have kept mice too, I like all animals but there is nothing  quite like the stupid, tongue lolling face of a dog to greet you in the morning. The daft worship on their face when you magic a tennis ball from your pocket or toss a tiny scrap of bacon to them as you sit in a pub garden enjoying lunch, the sun and a pint. Dogs are slaves, I don't fool myself. For years we have bred an animal to be obedient and do our every bidding, yet at the same time we have bred in a love, a desire in them to please and adore us. I don't know what sort of person it makes me , I suspect all dog lovers are seeking adoration and love (who wouldn't love that!) and so a dog, or dogs are on my happy list. (I realise saying I must have a dog to be happy while having no dog is a bit of a contradiction, I'm filling the dog shaped space in my happy with cava)

Twitter

Last I'm going to name Twitter as a happy. Maybe it should have been first. I once gave it up for a week and was as miserable as the most miserable thing you can imagine. Twitter is still my love despite all its changes (many of which I dislike). Twitter is a sounding board, a place to whine and whinge, a place to show off, to just spout rubbish, to 'let my brain leak' as many people have said. But mainly Twitter is a link, a link to other people all over the world. Friends that I have never, and probably will never meet, but who I can talk to about anything. I have met people in real life that I know on twitter but friends are friends whether you've met them in the flesh or not. Twitter is a place where someone is always awake, someone is always there to be silly, to be serious, to console or to cajole. Twitter is a place where people will send you a recipe, a beard picture or a kitten as necessary, a place to make you care about others, a place to move you to tears both of sadness and joy.  And so Twitter, my very happy place, filled with my friends, that is a happy.

And so there is my list. What would yours be? Come over to Facebook or twitter and let me know. And in the meantime I tag MamaCrow over at Views From The Crows Nest to tell us her happy non-negotiables. I'm also tagging Siren of Brixton and NotReallyALlama. And if you would like to be tagged let me know and I'll add you here.

Ranting and Pissed off about poor PR and lack of Coffee

Copyright: czany / 123RF Stock Photo

It’s been a while since I’ve had a good old pointless rant on the blog, but last night tipped me over the edge into being a pissed off tattooed mummy so today you have this little gem to read.

A while ago I received an invite to a sampling evening at Costa Coffee, lots of people, maybe all card holders, were invited too and I initially ignored it as it would be a rush to make it after work, but then after a reminder invite I thought ‘what the hell, might as well, a few nice snacks, some tasty coffee, might cheer up a drab Wednesday night’ so I duly sent my RSVP

Fast forward to yesterday, the Wednesday in question. Due to some bad planning I ended up working at a different site to normal, and to make matters worse had a meeting at a third location! I decided to walk to the meeting to save parking costs and as the parking is hard to come by any way, so I walked half an hour down a steep hill to my meeting. After work I realised I now had to walk up a steep hill for 30 minutes in the dark, carrying a laptop and other bags and to top it all it was now pouring with rain.

I arrived back at the car looking like a drowned rat, fed up, aching (that much walking when you have motor and sensory neuropathy is just stupid! Idiot) and now half an hour later than planned, and an hour’s drive from home and the Costa event. I thought about not going, but maybe it would be I needed, after such a miserable walk, and I’d dry out on the drive.

I arrived at the Costa Coffee shop at about 7.10pm, I saw no sign of anything Christmassy, staff were mooching about, hardly any customers…I panicked, was it the wrong Wednesday? I checked my invite and the Costa twitter feed, nope it was tonight. As I walked to the counter I was overtaken by another woman..she was deep in conversation by the time I arrived and what it boiled down to was that the staff had no clue whatsoever about the promotion! They said the manager was away on a course and no one had told them anything, they made excuses but didn’t apologise. The lady asked if there were any samples at all “no, not really” they replied. She looked annoyed, unsurprisingly as she seemed to have brought a friend (we were promised extra club card points for bringing a friend) I stood listening, incredulous, and then, almost in tears, I left. Seriously pissed off.

But my fun evening didn’t end there, I realised my petrol light had come on in the car so went to the garage to fill up, a car on the forecourt had broken down and was being pushed into a parking place by the owners, the garage attendant was telling them they couldn’t leave the car there and they were arguing. As I was paying for my fuel they were still messing about, when the garage lady ran into the kiosk shouting ‘call security!! They are threatening to jump start the car, right over the main tanks, they won’t be told!!’ Wowser, maybe my night could get worse, maybe I’d be blown up!

As you will see, I wasn’t. I paid and scarpered, arriving home over an hour late, pissed off, wet, hungry, achy, tired and cold. Only cheap wine and twitter (and a cheeky young man threatening to send *ahem* personal DMs to me) cheered me up.

This morning my hips are so painful I can hardly walk.
So, moan over…how was your day?

Festivals for the (mildly) disabled

I have Charcot-Marie-Tooth Disease, I am a mother and I work full time as an IT Manager.
CMT has probably shaped who I am the most as it’s been with me the longest, although it was not diagnosed until I was 36, I had been showing symptoms since my early teens and I had had some surgery on my feet in my twenties. My hands’ clawing was at first assumed (by me) to be related to my job and excessive computer use but a keen neurologist said that as soon as he saw me walk across the room he knew I had CMT! My main symptoms are weakness, tiredness and poor balance.
 
CMT certainly doesn’t define me though. I am a keen camper and  part time festival hippy. Every summer I can hardly wait for the weather to be good enough to tempt me out in my tent. I am a minimalist Glamper! No electricity hook up but plenty of bunting, solar powered fairy lights and flowery deckchairs. My husband doesn’t share my camping bug so I camp with my 13-year-old daughter.
 
To ensure I can get the tent up on my own I use a Dutch Pyramid style tent, one most would think of as ‘old fashioned’, but due to their reliance on one main centre pole they are simple to put up even when you are alone, have poor balance and weak hands. I actually own three tents (one painted for festival use) and only threats from my husband have prevented more purchases. Ebay is a terrible danger to the camping obsessive.
 

I usually start camping in March or April and go away as many weekends as I can until October, last year we camped for Halloween which was cold but fun. But the best use of the tent is to attend a music festival for a long weekend, letting my hair down, entwining it with flowers and being a hippy for a while.
 
This year I’ll be taking my daughter to Glastonbury, Wilderness and Camp Bestival again, a fantastic music festival in Lulworth in Dorset that is family friendly, very safe and enormous fun.

For anyone that hasn’t been to a festival I can recommend it as a way to relax; even the uneven ground can be overcome if you take your time, there is no hurry to do anything, lots of people are drinking, so my wobbly gait and odd stumbles go unnoticed.

For those that can’t face pitching a tent (although that is the best bit) many festivals have ready-pitched tents, yurts, gypsy caravans, and disabled areas close to the action to save the long walks. I'm not 'disabled enough' to qualify for a spot in the disabled camping section and don't use a wheelchair, I'd love to hear from campers or festival goers that cope using a wheelchair on site, I imagine that unless it's very wet a motorised wheelchair would cope ok, but spare batteries? 

Don’t be fooled into thinking that festivals aren’t out there for you! There are hundreds
of festivals every year from small beer festivals, to huge well-known music festivals. Local festivals or those of special interest are often more fun than the larger ones.

We like smaller festivals where there is dressing up, music, food and general silliness, on a smaller scale,  this year we are off to the Findon Faerie Festival in May

One thing I did invest in was a festival trolley. You can hire them but I use mine all through the festival as transport and instant seat! (I've got a well trained helper)

 

For information on these and other festivals
http://www.magicalfestivals.co.uk/
http://www.efestivals.co.uk/festivals/
http://www.campbestival.net/
http://www.wildernessfestival.com/

article originally published in CoMmeNT Magazine in 2011 (updated for this blog post)

The one where I explain Charcot-Marie-Tooth, a condition I live with

I have CMT (Charcot-Marie-Tooth) I’ve mentioned it in passing a few times. I was born with it, it’s also called Hereditary Motor and Sensory Neuropathy (which sounds both scarier and slightly cooler imo) and that name, rather than CMT (named for the three Drs that identified it) describes more about what it is. It affects the nerves (neuropathy) , it’s there from birth and is passed on (hereditary), and it affects both movement (motor) and feeling (sensory).

The nerves are affected in CMT type 1a (my type) much the same way as they are in MS (Multiple Sclerosis) The myelin sheath (like the plastic cover over an electric cable) gradually degrades over time, electricity leaks out during nerve impulses, so they are weedier, slower and generally rubbish. It affects periphery nerves though, not central ones, so the earliest signs are hands and feet having less feeling and movement.

I showed symptoms at 12, mostly poor balance, and ‘odd walk’ but wasn’t diagnosed until I was 35 and had just had DD. Pregnancy had made the symptoms slightly worse. I have previously had operations on my clawed toes but it had been attributed to ‘bad shoes as a child’, now my hands had started to claw too so the orthopaedic surgeon referred me to a neurologist who diagnosed me first by my walk as I walked into the office! CMT was confirmed by electrical nerve stimulation tests and finally a blood test.

Me in my late teens, ET hands even then!

I mainly have, constant tiredness (due to everything I do taking more effort that a ‘normal’ body). Skinny arms and legs, as the muscles work less well due to less nerve input. Poor posture, bad balance, funny walk, clawed hands….and am the weediest person I know. I need help to open bottles (!), sandwich packaging often defeats me, fine finger movements are WAY beyond me, (DD often has to help me button my shirts for example, once I couldn’t get out of a pair of jeans as I couldn’t undo the button!) I find pegging washing tricky and have to use a grip with my palm not finger and thumb to open a peg. Cashpoint machines and carpark ticket machines often don’t let the card/ticket poke out enough that I can grip it and I have to ask for help…

So, mostly I walk funny, I trip and fall often, (shush, this is nothing to do with the beer consumption) I get tired easily, I’m clumsy, and lots of silly ‘normal’ day to day tasks are tricky to do (though I find work arounds). I don’t (unfortunately) qualify for a blue badge, or any disability benefit. I work in IT. Typing is easier than writing, but cramps in my hands are getting more common.

 Ho hum.

 Hope that answered a few questions.

And if you have NEVER even heard of CMT why not forward this to at least 2 friends? (if you had, just forward it to 1)

Oh and I nearly forgot!! Check out Korea's Paralympic Swimmer Min Byeong-eon.

An Olympic Meme

Crank up the national anthem, get out your gold medals because I've been tagged for the latest meme sprinting round the block. No list of rules for this one, just a list of Q & As and MelkshamMum has passed the baton to me so here we go...3,2,1 and they're off

If everyday tasks were an Olympic event what would you get a gold medal in?

Sleeping, absolutely without any doubt. I can sleep through practically anything. Storms that destroy our garden shed, radios blaring, toilets flushing, 11am coming and going, movies, I once fell asleep in a nightclub. I'm a Gold Medal winner for sleeping for sure.

As a child, or now even, did you excel at a particular sport?

No. As a child I was terrible at all sports and it put me off doing anything even remotely sporty for life. I was finally diagnosed at 36 with Charcot-Marie-Tooth explaining (finally) that I wasn't 'lazy' or 'rubbish' at games (as many a PE teacher had suggested) but was, in fact, mildly disabled. I'm looking forward to watching the Olympics though, and the Paralympics even more so.

Michael Phelps (swimmer) or Michael Johnson (runner) - which sport appeals to you more?

I can neither swim nor run. However the idea of watching fit young men do either is really rather appealing....hmmm glistening muscles....

Gratuitous Muscled Body Picture

How fast can you get out of bed and ready to go out the door if you miss the alarm and sleep in?

I rarely sleep in because while being able to sleep for England I am an early riser on a work day - out of bad making tea for DH at 5.30am. If I did oversleep I could be up and out in 10 minutes. I don't wear makeup and showers are for sissys (kidding I do wash, but if in a hurry I'd skip a day)

What fantasy sport would you like to see made into an Olympic event?

Extreme Breastfeeding, you know, while bungy jumping, underwater, up a mountain, while skydiving, that sort of thing. For those that don't breastfeed there would be a bottle feeding version but I think it would be harder to sterilise bottles and milk underwater than to breastfeed there :-)

Claim to fame time: have you ever met an Olympian and who was it?

No, but am attending some events this year so there is still time. Are you allowed to lick Usain Bolt?

What event in past Olympics can you remember most vividly?

To be honest I don't really remember many events - just the shock stuff like Zola Budd changing nationalities to run in the Olympics, and Ben Johnson being stripped of his medal in 1988

Tuning in at home or tickets clamped in sweaty palms?

I have tickets for Dressage (that's a horse thing ;-)) and tickets for swimming, dressage, and wheelchair basketball in the paralympics. DD and I are going (DH not so keen) and we are very excited. (Tickets not arrived yet though! *bites nails*)

Who do you think most deserves a gold medal (any walk of life not just Olympians)?

Would be slushy to say my other half wouldn't it? but he's been a SAHD for the last 12 years and does most of the housework, despite being 20 years my senior. So I think I'd award it to him. 

Now I have to pass on the baton, but whose sweaty palm is outstretched to grab it?

I pass to  The Moiderer (because she can actually run and has done the London marathon!)

and  Very Bored in Catalunya because she is lovely and is in the right place for some Beach Volley Ball

Feel free to snatch the baton for yourself if you want to answer the questions, and leave a comment here so I can pop over to look.