Just in case you're not aware of it today is International Awareness Day for fibro/ME/cfs
Please let's all do what we can to raise awareness and help our Host Charity FibroAction and its great work in supporting people with Fibro everywhere!
Please can you share my pic and help me to raise awareness of fibro and spread the word that fibro is not invisible
If tweeting please use the tag #fibroawarenessday or mention @fibroaction thankyou
FibroAction also offers a range of charity merchandise, including clothing from Spread-shirt. I have pasted the link below for anyone who may be interested in purchasing any of the charity products:
Do you know I don't think I have ever had a plum pudding! Sounds yummy. I used to make a mean Mary Berry fruitcake. I don't know what size tins she has but it makes two large ones in mine so neighbours get some!
I haven't made it in a long while but my thirteen year old boy, Fionn, loves cooking so I can perch on a stool and get him to run about. He even got an apron for Christmas with little chef on it!
I try not to get him to do too much for me as I want him to be a son not a carer, but it was bliss when he started making tea and coffee last year! Lol
I love baking but my kitchen isn't disabled friendly enough for me, my landlord has agreed to make alterations though, just waiting for it to happen
I'm sure your son is happy to help out his dad when he can and cuppas are important
My hubby is my carer and we made a few changes in the house to help us out such as I now have the kettle etc in my room because the kitchen is down a flight of stairs and it's not safe for me to be carrying hot cuppas up the stairs. I have very poor balance and co-ordination so one hand is on the rail the other on the opposing wall No free hand
I tried the flask and a bag thing! nasty it doesn't taste the same out of a flask
We have nearly finished the adaptions to the bathroom and are looking at changing the kitchen around. I can't reach so top cupoards are a no no or I end up trying and hurting myself. I used to be a plumber and kitchen /bathroom fitter so I have all the ideas and tools. Just no energy to do it!. I buy broken bits at car boots and troll ebay, we got a three grand display bathroom for £100! It's smooth flooring I would like everywhere so when I shuffle for a pee in the night. We dread the landlord seeing it as it is!
PX Cake rules, got a ginger aNd choclates one for tea, it's quite small for three so their May be riots but m h on it he ig ick!lol
If only the chair did make me more visible though!
Do you not find that people still clamber over you like you're not really there?
On a recent train journey there were 3 of us in wheelchairs, 2 of us with carers too!
The guard was fantastic no problem with any 'train people staff'
When the train pulled into Newcastle 2 of us were getting off so the guard ushered people on the platform away from the door because he needed to get the ramp off............. stupidly placed behind the door! Anyways, joe public go into panic thinking train is leaving without them so they hit that 'door-open' button knocking the poor guard sideways, glared at us and barged passed!
Now if that wasn't rude enough, the next bit is!
Everyone decided to exit the train from the door that we were getting off at, approx 20 people I'd say
Poor guard pushed out the way again because these people thought the train would leave with them still on it........ I mean duh! It wasn't going anywhere while we were still there! What amazed me was the sheer ignorance to the other door, which was actually closer for most of them to get off at and only 2 or 3 actually said sorry! excuse me
I was right in the aisle by the door because it was a local shunter train and we were only going 2 stops the guard put us there, appropriately in the wheelchair section of the train!........ anyways! so I was barged and bumped a lot and had bruises to show for it too!
3 wheelchairs, 5 people....... sorry 6 including the guard........ and all invisible
That was only the first part of our journey which included another 2 trains
I must state though we were treat with great care and attention by all train companies and their staff
There's now't stranger than folk!
Didn't spoil anything for us but did get the heckles up for half hour or so
I do live in a quiet rural area, in the dr's this morning another patient asked not how I was but how's the machine. In a larger village I'm infamous but everyone gives me space - sometimes getting positioned in the bus is problematic. The only time I've had a problem was in Leeds station, a tall guy was walking looking at his eye level and fell over me & chair, of course it was my fault
You're right about the lemming attitude of people getting on and off trains I'm always on last and the lemmings the have to move their baggage/bodies anyway, why don't they just open their eyes and think
The lack of common sense incenses me enough to be very blunt sometimes
The train scenario was a difficult one to bite the tongue over!
Didn't want to embarrass the hubby even though it all annoyed him too!
We did 'overtly' discuss the inhumanity of it as a group whilst waiting patiently as they all clambered over the top of the 3 of us, 2 carers and the guard to get off
I really wanted to ask them to stop being so ignorant and use the other door please............. I thought the guard should have asked that though! my only criticism!
When in the City at home people are genarally cool when they see me in the power chair and are usually ok Except in the Shopping Centre you get tutted at and snarled at because they have to move out the way....... you know the ones that walk directly at you in a straight line staring at you and can blatently see you but still expect you to jolt out the way!
Don't know about you but my power chair is a 'beast' and very heavy so it doesn't easily swing out the way of oncoming pedestrians and also.......... doesn't have brakes!! The only way to stop moving is by taking hand of the gearstick
Oh! and my hamsters squeak louder than the horn beeps!
I sit there thinking that the guards would ask passengers to use another exit/entrance, one did once but I think maybe the 'assistance' thing is too new to most of them.
Sounds like my chair It's so annoying that I have to wait a few seconds after moving the joystick before the chair responds, no-one else knows this One day I'll get it adjusted Yes, no brakes
The R-net regulates the horn, I have another chair, both Meyra but different control, one, no matter which chair I use it on, is louder Used to use the better control for both chairs but can't be bothered to change them now, keep the better ones on my 'everyday' chair. This is the one which just about gets on buses and through some doors and on some pavements The other is like maneuvering a small car with front wheel drive and rear wheel steering (strange). I can't park it next to a wall outside the house (nor anywhere else) or I can't maneuver away but it's great for off-roading
One has a white chassis, the other a silver 'skirt', I just don't get the 'blind' general public On the other hand I get to have some great conversations with strangers
I've never seen another big chair on my travels and taking it to Cali in Colombia was an experience, I was talked at, in Spanish, by people who were interested in the chair even after I had told them "Lo siento. No hablo espanol"
My chair is black n charcoal so not bright n visible but I am usually in purples so I stand out......... even I do look like a giant bruise
I have leg extenders that stick out though and trip those up that fail to notice me
They're manual so I can't drive the chair and alter them at the same time........... people don't know that!
heheheh
I refuse to risk injuring 5/6 innocent passer-by's for the sake of 1 ignorant so-n-so the so-n-so will get hit!!
Also, I can't parallel park in my chair or reverse very well either :o...
...... I could do with reversing beepers like they have on cars! I'd say wing mirrors too but I'm too busy concentrating on controlling the chair to look in a mirror......... I don't drive a car btw never even had lessons I'm lucky there's a no-through lane at the back of my house that I could practice on
That's a bit like off-roading because of all the potholes hit power 5 and see if the chair will zoom in a straight line 100m to my house
My hubby is left for dust.............. LOL
get to the end...........
Do a Do-Nut whilst pointing walking stick out forward........
As Fluffmeister Extroadinnaire I'd like to say thanks for sharing my poster it got a good number of retweets and favourites on the twitter post too so hopefully it's message was spread far and wide.
Together! We will fight Fibro! You are all amazing, thankyou and keep up the good smiley work
Energising fluffs for everyone today to aid your well earned R&R from all your hard work
Sad tales of man's lack of compassion to others with less than perfect physical ability. .......but agree that the transport staff could do with stronger powers or ?? simply have more of them to stop the ignoramuses in their tracks. .....though wouldn't a simple loud voice from the staff reassuring folk that there was plenty of time and wheelchairs go first at this door?!?
But before the post became more serious I enjoyed the earlier frivolity. .always good to laugh and smile!
Thanks for taking part, helping to raise awareness and enjoying the frivolity - laughing is good for the soul and smiles are infectious
I totally agree with you that you'd think something as a simple as a loud voice would do the trick If only everyone could see that! or to even hold open a door!
Campaigning to help make a difference let's us do the shouting for ourselves and it is sad that the serious side can take away a little of the frivolity.
Speaking for myself mocking ourselves may not be desirable to some of us but I feel that it is better than dwelling on our invisibility
............ so shouting it out for others to hear whether it be a moan, groan, giggle or holler it's all good in the name of spreading awareness of invisible diseases such as fibro/me/cfs (and many more) because it helps to show the differing ways these diseases can affect us
Our friend Mr Badger is still invisible too
Though he was the Scarlet Pimpernel at last look
I'm still chuckling at the irony!
Fluffies and smiles for you {{{{{{{{{{{{ stumpedok }}}}}}}}}}}}
xxx sian
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