I will warn you now that this post will deteriorate into a rant and I cannot be held responsible for my language that may follow…………..
I have watched loads of these videos and laughed at the person being iced without ever having any intention of doing it myself. Then I watched a video that changed all that. This video is heartfelt and shows the reality and the fear that someone who cares for someone with this disease or has it themselves.
I have also been chatting to ‘friends’ on Whatsapp who over the last few days have shunned and slated people who are nominating them to take part. I warned them I had been nominated and would be doing it anyway ( I don’t bow under peer pressure!). However, in the conversation one lady put out a HUGE long list ( obviously copied from the net somewhere) giving other things I could do to ‘walk a mile in ALS shoes’………
* put weights on my ankles and take the stairs 2 at a time to feel what they feel going upstairs
* put weights on my wrists and try and lift a cuppa or feed myself
* lay in bed for an hour in one position without moving
* put marshmallows in my mouth and try and have a normal conversation and make myself understood
This got me riled to say the least so I ‘POLITELY’ put back….
‘ I may already qualify for those as I have M.E / Fibromyalgia meaning severe and chronic muscular skeletal pain ALL the time and have NOT been pain free for the last 4 yrs at least- NEVER in that time, EVER, even in bed. I use a walking stick daily due to severe exhaustion and ankle pain and a wheelchair for anything longer that a short walkabout. I have nausea and migraines regularly and I feel as though I carry a full extra persons weight on my back and bones and muscles all the time and my bedroom is up 2 flights of stairs- hope that helps! ‘
RUDE? No I didn’t think so but guess what…… I haven’t heard a peep back from that particular person! When I relayed this to my family and gave them the alternatives that she offered my youngest ( whose is 13yrs old) just said ‘ That sounds like you Mum’.
So I did my challenge knowing that iced water was definitely going to give me severe problems later in the day, however, my reasoning was that MND is degenerative to the point of taking your life, my illness is long term and chronic also but wont take my life unless I choose to make it so.
My #IceBucketChallenge for ALS/ MND
I know there was a bit too much vengeance in the throwing of that water. But what I hope you notice is that I was rendered speechless, and the cold literally stopped me from doing anything apart from shake, which is the whole idea of the challenge. Just after that my OH had to help me up and by the time I had walked to my back door to go inside I had a searing pain in my left temple and a complete wave of nausea!
I was quite proud of myself though for doing it and my 2 boys have completed theirs today and my OH is doing his tomorrow ( revenge will be sweet!) and we are donating as a family with everyone contributing.
I felt good about myself that I had done something ‘good’ for charity, a great cause that most people know very little about and really is a horrible degenerative disease.
Then tonight I saw a random comment on Twitter ( and I know and understand that everyone has their own opinion and I do respect that- hence I didn’t get into a Twitter row) that simply said ‘I am so over this #icebucketchallenge bollocks’. This one comment sent me completely off my fecking rocker. Bollocks? Bollocks? Really?
Ok I know this challenge is a bit like Marmite and you either are for it or against, but really raising awareness for a degenerative disease- Bollocks- I think NOT!
I would LOVE to know if that person has taken the time to visit the MND or ALS site. I would like to know if they have a person in their family who suffers with a chronic illness that is NEVER going to go away let alone take their life. I wonder if they would be of the same opinion if someone in their family or they themselves were diagnosed with ALS.
Answer me that………. would they be so fecking cold hearted if they had. This is what it is all about, raising awareness and funds to help with research into this disease and to help people who have to suffer this. I mean come on you wouldn’t see your family pet in that sort of distress let alone a member of your family.
So you can shove your ‘Bollocks attitude’ where the sun doesn’t shine, empathy and compassion costs nothing and it really wouldn’t hurt you to show some occasionally!
To Donate just text ICED55 to 70070 to donate £5 to MND Association- it will take seconds for you to do this but could make all the difference to future sufferers.