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

Compassion Fatigue - I'm guilty

BBC News - The direct mail that tugs the heartstrings http://www.bbc.co.uk/news/magazine-33549655

This rant was brought about by a reminder via the BBC News site of the way charities target people.

I realise that charities need to be given money and time and often old clothes to work, and I know about the argument that the money spent on advertising and promotion is regained in donations but one thing that is annoying is that it's not fairly spread.
For example. I see an online request or a TV advert for a specific event (in the last year this has happened to me at least twice) I respond with a donation - usually using a website, my name and address and details are given. Over the next year I receive numerous 'news letters', 'updates', requests for more money, asks for direct debits, pens, coasters, in short I receive in 'junk' mail well over the value of the original donation I made. So while over all, the advertising is paid for by donations, I feel that mine is wasted and hasn't gone to the thing I intended at all.
And usually, unlike with an email, I don't have an easy opt out on the paper mail. There is no 'send the enclosed card back to stop future mail'. Last year after about the 7th mailshot I finally tracked down, via an online search, an email address and asked to be removed from the mailing list. So far I have had no more mail from that charity.

Christmas is also a high pressure time for charities with certain charities insisting on sending 'gifts' of pens, stickers, wrapping paper, cards etc and then asking for a donation. The idea here is presumably to make you feel so guilty at having received a gift that you donate more. It's horrible to add such pressure in a donation request in my opinion.

The people in the cases the BBC highlights feel pressured to give and I feel that too sometimes, though the final effect too much 'bumpf' through the post actually has, is to harden me to charity requests.
Because I do support several charities (on a regular basis) I now find it easier to disregard letters that fall on the mat begging me to stop child abuse, help battered woman and feed the starving elderly. I send these letters straight into the recycling. I am not proud or happy about this hard hearted attitude, I would like to be soft and kind and care lots but as the BBC has reported, it doesn't stop, it increases. Donate £5 and next you will be asked to donate £20 and then set up a direct debit and then a new, equally worthy cause will fall onto your mat.

I don't know the answer. For me it is picking a charity or two and setting up a regular donation. I do respond sometimes to world disasters but luckily my main charity is also a member of DEC so I don't get extra requests subsequently. Otherwise, for local charities I donate in cash only, so they don't have my details or know who I am. Perhaps charities could look at online and phone donations and ask at the time "Is this a one off donation or should we contact you in the future?" and make that a large and clear question, not a vague check box buried amongst the terms and conditions in a way large corporations would be proud of.  Don't even get me started on the 'chuggers'; the charity muggers that accost you on the street and try and guilt you into donating, showing you pictures of starving cats and beaten dogs.

Have I got 'compassion fatigue'? Is it possible that the constant attempts by so many charities to wear me down, to get me to part with money, has actually had the opposite effect? Maybe.

How do you cope? Do you give regularly? Not at all? Cash only? Or are you a sucker for a good cause and give as often as you can?

For information you might like Give as You Live - an online scheme (which costs you nothing) where you sign up and many online purchases cause charity donations to be given on your behalf, Amazon is part of their scheme for example.

The charities I support regularly are CMT UK (as I have Charcot-Marie-Tooth it's rather self serving of me) and World Vision - where I sponsor a child in Uganda.

Never Volunteer

That's what they tell you in the army apparently. Never volunteer. Because, well you know, volunteers get the crappy jobs, the ones no one else wants. No one does something for nothing unless they are an idiot right? I mean who would waste time and effort to do something for free? What's in it for me? Nothing...or is there?...

When DD was in the Rainbow Guides I stayed for the first few weeks while he settled in. For those that don't know the Rainbows are like smaller Brownies, part of a Girl Guiding Family. And they do age appropriate stuff in the same was the Brownies do. So each week the girls would have 'circle time' talking about things they had done in the week, lost teeth, days out, gold stars on homework, that sort of thing.

Then we would maybe have a speaker, a local vet, or emergency services worker (yes ladies there were firemen) and sometimes a trip out, a walk to the beach, a treasure hunt, a trip to the fire station (there may be a theme here). We would talk about helping each other, what women and girls could do to be useful and then we would do a craft, colouring or making a simple gift like a bookmark etc.

Sometimes we would take part in the wider world of Guiding, setting up a stall at the local Guides Fayre for example.

Then one day when DD was happily settled and I was leaving one of the leaders told me that they may have to close the group. There are rules about minimum adult numbers and they were losing a unit leader to retirement....can you see where this is going?

How could I not help? The girls were all delightful and loved all they did, the leaders were friendly and happy to train me up (though I had to buy my own uniform) and most of all DD loved it. So I started helping, once a week, a few hours and the odd craft to organise (did I mention I grew up with Blue Peter and simply loved making things, it became my 'thing' to organise the craft each week) and so I volunteered. I was a volunteer unit helper until sadly the hours I worked changed and I was no longer able to attend the evening meetings, DD left and became a Brownie and my links to the Guides faded away.

But volunteering is great, and if you get a chance you should give it a bash! So many opportunities are out there from helping at a mum and baby group, reading with children at a local school, visiting people in hospital, helping out in a charity shop, the list is endless. Why not look at CSV The UK Volunteering and Learning Charity for ideas.

CSV are currently celebrating 50 years of volunteering! 

50 Years!! Why not be part of something big!

And if you are arty and over 14 but under 25 why not check out the Poster design Competition?

Scream Time

sorry no, not scream, screen...or maybe I was right the first time.

We (not the royal we, I do have a husband) have settled on what we consider appropriate screen time for our soon to be teen daughter.

We are not a family that watches much TV, we have never watched before 4pm and as adults we tend not to sit down to watch until about 9pm and we go to bed at 10pm so we are not square eyed. We also try to be discerning in what we watch, sticking to a few dramas (no soaps, no reality tv) and some nature, or history or art and culture stuff.

We have a child though and she is less discerning, loving many comedies, kids shows, reality stuff, whatever and while we try and restrict times and ensure the TV is not actually unsuitable we let her get on with it. For a while we even tried total derestriction (during the summer holiday) hoping she'd get bored and it would lose the attraction, this didn't work, she pretty much watched every waking hour and moaned if we asked her to leave the house with us at any time!

So now we have a fairly strict regime of timings, less TV in the week and never more than 2 hours a day. (screen time is not just TV it includes computer/wii time too but often computer time is actually youtube or iplayer time!) and for a while that seemed to go well but lately the times for TV are seen as a right, an entitlement, with arguments that TV comes first, before chores, before homework. Behaviour is getting worse too and while I know teens do have the whole struggle with hormones ... it all seems so TV orientated.

I guess what I wonder is what you do? How can we cope? Are we unfair? What is normal? Do we seem too strict or not strict enough? Is there ever an excuse for rudeness?

I totally adore DD but some days I can see why some animals eat their young!

Help!