Showing posts with label help. Show all posts
Showing posts with label help. Show all posts

5.9.17

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

19.6.14

Sugru - a rubbery review

Just before Father's Day  I was sent a pack of Sugru to review. I had never heard of this miraculous substance, and it was being sold to me as a perfect gift for Father's Day - after trying it out I would say it's the perfect gift for anyone!


It's a malleable plasticine like substance, that is sticky enough to adhere to pretty much anything and then...wait for it ...sets like rubber over night! I know! how cool is that!

There are too many uses, fixing fragile phone charging cables, tidying trailing computer cables, making little key hooks, adding grip to things, fixing metal pan lids so they no longer burn your hands...and I used some to turn an annoying slidey hanger into a useful clothes hanger!




It's great! It's heat proof, dishwasher proof, cold proof....I fear that like when I first got a laminator and laminated everything, now I shall be 'improving' everything with Sugru! It comes in various colours and you can even mix them to get shades to match what you are reparing. I'm already sadly addicted.

Sugru is available at B&Q and Wilko from £6.99 - no doubt you can get it elsewhere too.

Disclaimer - I was sent a pack of Sugru to try but the ridiculous enthusiasm for this product is all my own.

 Sugru is available at a wide range of retailers including B&Q, Wilko and Maplin, outdoor stores including Blacks and Ellis Brigham as well as online at sugru.com. Sold in packs of 3 uses from £6.99 and packs of 8 uses from £12.99, sugru is available in a variety of colours - red, yellow, blue, black and white, all of which can be blended to make any colour you like!

21.5.14

How to hold it together when it's time for potty training

I’m going to begin at the beginning, with the obvious.

Children are available in all shapes and sizes. Some will be happy and ready to learn about potties and toilets at 1 year old, some will have no control or interest until they are 4 or older.
Some children will have medical issues that will mean that sorting out when to use a toilet will always be an issue.

You can sometimes teach a child a bit earlier by sparking an interest in potty training (using rewards, fancy new pants, the joy of being ‘big’ etc) when they obviously have control and knowledge over their bowels and bladder, but not always.

You can never potty train a child that has no control of or prior knowledge of their bladder and bowel movements.

There are clues as to whether your child is aware that they are weeing or pooping. They may notice after the event and ask you to change a nappy. They may become distracted and stop talking while they poop. But these are not always signs that they know it’s coming, or that they can stop it happening and wait, even for a few seconds!

The signs too look for are those of forward planning! Is your toddler hiding before they poo or wee? Do they clutch at themselves before they wee?, can they ask to go to the potty or the bathroom? (this doesn't have to be verbal, just as long as it's clear and you understand)

If you think your little one is showing some signs you can give potty training a go. If it doesn’t work in a week my own opinion is give it a rest and try again in a couple of months.

Tips to potty/toilet train/teaching

  • Get a potty for their doll, if the doll wees even better! Play at potties. Let them be the parent and explain it to the doll.
  • Buy some ‘big child’ pants. I don’t hold with pull ups and the like, I’m old fashioned I know, but wee trickling down your leg is a fine reminder that you are weeing and helps the young mind get a grasp much faster with what is happening in my opinion.
  • I also favour the all or nothing approach. Nappies at bedtime is fine but once in pants in the day, when awake, stick to it. No nappy because you are popping out! You need to help your child and different rules at different times are likely to confuse and upset.
  • Have lots of potties. Seriously buy lots, at the very least have one upstairs and one down. But ideally one in every room. Leave books by them. Remind your child almost hourly to have a try for a wee, read to them or let them read so it’s not boring as they sit, but don’t make them sit for ages! Praise them like a crazed person when they get it right! Say ‘oops, better luck next time’ and clean up quickly when they get it wrong.

  • Take a potty with you when you go out, stash one in the car, under the pram, a folding one in your bag…always have one to hand, little kids can’t wait long – your new super power needs to be producing a potty in a blink! (DD once used hers in the middle of Sainsbury’s – many people are now thinking ‘how disgusting’ but it was that or a puddle! And at the time, no one complained and I removed potty etc with calm and haste)
  • Summer time is best – spend a lot of time in the garden!
I was lucky with DD she was only about 18 months when she decided ‘big girl pants’ were the way forward and she was dry in a week. I know this isn’t always the case. As I said, talk to your child, plan when you are going to give it a go, if they don’t get it in a week, or at least start to improve and have fewer accidents, give it up. Tell your child you’ll try again in a while. Wait a few months. It will happen.

  • Try to remain relaxed.
  • Buy some carpet cleaner.
  • And some wine.
  • Good Luck.

Disclaimer – I have only potty trained one child, the perfect DD, and this was 13 years ago, but my advice stands...and you don't have to take it, that's how advice works.

Photo copyright  : https://www.123rf.com/profile_mitarart

12.12.13

Phishing/scam email of the day

I thought I'd share this little gem just because it is slightly unusual (in that the sender is 'in the UK') while at the same time having all the hallmarks of a scam or phishing email. (nice to see that this type of scam dates back to 1830 - obviously not involving email!)

Anyway here it is in all it's glory, enjoy.

Hello,
 
I'm Sandra Baker, I'm 15 years old girl I live in Bolton UK before my Dad died in a car accident 3 years ago, I now live with my step-mother in Warrington.

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