What is a spoonie?

Some of you may have heard or be familiar with the word 'spoonie' that some chronic illness sufferers use to describe themselves. However a lot of people probably haven't heard of it or even if they have, they may not really be sure what it means.

It was developed by Christin Miserandino who suffers from lupus, which is another chronic illness. The following link takes you to her website which explains how she came up with the spoon theory & the term 'spoonie' link to Spoon theory

In a nutshell we start the day with a certain amount of spoons & each "activity" uses up a number of them.  Lower energy activities don't use as many but obviously any activity requiring using more energy use up more spoons. Which is why we have to try not to deplete all our energy too fast as once the spoons have gone they aren't coming back!  The word activity can be quite deceptive though as stuff that us poorly people class as 'activities' are not the sort of stuff non poorly people would imagine them to be.  Simple things like getting up out of bed & brushing teeth use up precious spoons.

This picture explains it quite well..

I have mentioned previously about there being a large M.E/chronic illness community online via Social Media. People can tweet using the hashtag (#) Spoonie & they will be able to talk to people who are in the same position as them.  People who understand.  There are (#) spoonie chats on Twitter & many people have developed good friendships as a result.  We liken it to being a spoonie family which is just because the community is so close. There is always someone there for you whether you feel low & need cheering up or whether you need to ask questions.  It is comforting knowing there are people out there who just get it.

It is really easy to use up spoons too quickly & one of the things that helps is to pace ourselves.  Which means stopping & resting after every "activity" before starting something else.  However it is not always easy to do & more often than not I am not very good at it!

Spoons obviously now represent more than just something we use to eat with & I have had some lovely spoonie gifts from fellow spoonies.  My friend made some chocolate spoons a while ago & sent them to some of us which was lovely.  Thanks Anna :) Very recently another friend decorated some gorgeous vintage spoons & sent one for my daughter & I.  I have mine hanging up near my bed & my daughter has hers on her wall in her bedroom. Thanks Charlotte :)

I also have some spoon charms which I use in my jewellery making - previous post about it here.  I have a bracelet that I made myself & love it.  I have also made them for other spoonies & one lady I did one for never takes hers off!

I have to go & rest now as have used a few too many spoons up writing this.. I will never learn!

Hope this has been helpful
xx

Wheelchairs

When I was first struck down with the M.E & pushed myself to keep working, I ended up pretty much housebound for a year. Once I started feeling able to get out again I soon realised that my legs were no longer my friends.  They didn't work like they should be doing & when I tried to walk even the smallest of distances I would end up feeling like I would collapse with a combination of pain & fatigue.

If I went out it not only wiped me out but I suffered badly with pain for several days afterwards.   So I was stuck in a bit of limbo knowing what to do.  I began thinking (but kept it to myself) about maybe needing a wheelchair.  Who wants to have to use a wheelchair & accept they cannot walk much anymore? I eventually plucked up the courage to say it out loud & I can't say it was very well received at first by the other half. But I suppose it's such a big thing to accept & not easy for others either.

I can't remember exactly the first time I used one, it may have been when we went away & I borrowed one. It was the only way I could get around but I felt so self conscious. However I would still probably be stuck in the house now had I not done it! The alternative to using a wheelchair was to not go out!  And when you have been stuck in the house for a long time, it sends you a bit crazy & cabin fever kicks in.  So to be able to get out, even if briefly, it makes a big difference to how you feel mentally.

I ended up using wheelchairs or mobility scooters (as I've mentioned previously!) when I went out shopping, as you can hire them at shopping centres etc.  Then after a while I went to see my doctor about it & got referred for one.  So not long after, I had my own brand-spanking-new red wheelchair to give me a new lease of life!

I felt very awkward when I first used it & I pretty much had to have a driver (!) with me too as my arms were no longer my friends either.  I clearly remember the first time I went on holiday with it & was at the airport.  People kept gawping at me.  Yes I know people look when things are a bit different. Human nature I guess. I was still adjusting to having to use it & I remember a girl, who can't have been much older than about 12, staring & staring & staring at me. Instead of ignoring it I could feel myself getting more & more wound up & I just snapped. I practically shouted at her & asked what she was staring at! The poor girl!!

People also treat you differently when you are in a wheelchair.  You get the pity looks. A lot. You get people who rudely walk straight in front of you & pretend they haven't seen you. When they clearly have but are just rude. Or ignorant. Or both. You get people who don't even acknowledge you & who talk to whoever is with you rather than actually making eye contact with you. Erm yes I do have a brain. And ears. And a mouth.  Oh and an actual personality of my own!

I accepted a long time ago that I need to use a chair but think I have only fairly recently really felt that there is no need to feel ashamed or embarrassed about it. Or when I see someone I know & I am in it, there is no need to try to hide! If people have an issue with it then it is their problem not mine.

I recently went for a reassessment for a new wheelchair & was told my other one, which I have had for 8 years, was far too big for me & I looked lost in it.  Perhaps another reason I felt self conscious, as it was so damn bulky!  The good news was that I would be getting a new one.
One that actually fits properly & that is a lot lighter. And that has back support in.  My daughter will no longer be able to sit on it with me as there is no room, but she is 5 now so really shouldn't be anyway!! I asked if I could add glitter to it & was met with a very resounding "no". So I had to pretend I had been joking.. which anyone who knows me will know I wasn't!

I had it delivered a few days ago & to my absolute delight the lovely man told me that I can in fact decorate it any way I want, providing I don't intefere with the mechanics.  So as we speak I have new zebra print wheel trims & I am waiting for some sparkle to arrive for it. Mad? Maybe. But I am proud of my wheels & can't wait to show them off.

Watch this space, perhaps I will end up on Google under 'blinged up wheelchairs'. And oh that would make me so proud ;-)

xx

Children & poorly parents

I had a funny turn the other day while my daughter was with me but luckily I had a carer there too.  I think it may have been due to low blood sugar but it has been happening a bit recently.  When it happened I went really light headed & dizzy so went to lie on the sofa. She suddenly appeared with cushions which she put under my head & legs. She then went off & came back with her Peppa pig (see my kids tv post!) blanket & put it over me. She is only 5 years old & it made me so proud that she would think to do it but also sad at the same time.

It got me thinking about how it must be for children seeing their parents poorly. For my daughter, it's all she's ever known as I had M.E when I had her & as a result she is so caring & thoughtful.  I would be lying if I said I didn't feel a bit guilty about it (not that I had any choice) as I would rather she didn't have to see me poorly & as a mummy who can't do a lot of the things other mummies do. BUT at the same time it has made her so non-judgemental & it has always been commented on how kind & caring she is.

At nursery, even as a toddler, she would help the others if anything happened to them & we were often told what a lovely nature she had.  At pre-school when we had parents evening, the teachers always said the same & how as well as the other children she was thoughtful towards adults too.  In her file we got at the end of year there were various observation sheets which they had filled in where she had done lovely stuff for others. In her first year of school they also said it & as well as helping if anyone was hurt she would say stuff to the teacher like "that's a nice top you are wearing"!! She just likes helping people & being thoughtful is part of how she is.

I think she must be like it because of how I am with my condition & when I look at it like that, as much as I'd like to be what I class as 'normal' it makes me proud to have such a lovely little girl. Don't get me wrong, she isn't so lovely all the time & is brilliant at arm folding, feet stamping & having an attitude more suited to a teenager!  The joys of having girls..

Some parents try to hide from their children how poorly they are to protect them but it just wasn't an option for me. My daughter understands my condition now, she knows I have M.E & knows I don't have a lot of energy.   She sometimes says stuff like "mummy don't try to lift that (whatever it is) as you aren't very strong & you have M.E"! Or "you stay there & I will get that to save your legs".  Makes me well up every time.

She will also sometimes say things, when she is playing with dolls for example, about one of them having M.E so is going to lie down to rest for a bit.  I would rather she didn't have to know about it all but it is how things are.

I met up with a friend recently who also has M.E & it was the first time we'd met in person as we became friends online.  My daughter adored her & she said something along the lines of she knew she had M.E like mummy has so she knew she needed to be gentle with her. Just so cute.

She makes me feel so happy every day & on my worse days, once I see her it lifts me loads. Proud to be her mummy ♡

Mobility scooters & wheelchairs & funniness!

Before I start this post I just want to mention that it has been a very sad week as a friend, who was a big part of the M.E community on Twitter, very sadly passed away.  I know how much he would have enjoyed this post & I would like to dedicate it to him.  Allan, hope you're laughing up there xx

☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆☆

I have been researching for this post recently; meaning I have been asking people via social media for their funny stories!  No naming & shaming but if you are one of those lovely people then thank you for the giggles & for allowing me to share :)

The idea for it came about when I recently used a mobilty scooter at the supermarket. When I was ready to leave, I asked my carer who was with me if she would take the scooter back for me & we swapped places. However instead of going into reverse she went forward & narrowly avoided knocking me over! I just laughed hysterically whereas she looked horrified at what had nearly happened!!

It made me think of other incidents I have had when using mobilty scooters. One that sticks in my mind is when I was at Butlins a few years ago & somehow managed to knock the switch into reverse whilst the key was in & I went straight over a poor man's foot.  I went into panic mode & went forward full of apologies but then (& this makes me cringe still) I went backwards AGAIN & did it for a second time.  Oh the shame!  The poor guy. He said he was ok, whilst holding onto his foot clearly pained & I felt terrible.  When we left I broke into fits of nervous laughter, I was nearly sick for laughing but in a kind of "what have I done" kind of way!! Do you know how heavy those things are?! Ooops.

Another one that sticks in my mind is when I went off in a shopping centre & proceeded to get stuck in a particular shop near the shoes.  I tried moving but it wouldn't budge. And then it happened. The whole stand of shoes came down. Shoes everywhere.  I have never been so embarrassed I don't think. It is a bit of a blur as I think I blocked it from my mind!! But I seem to remember someone coming to move the stand & me mumbling apologies before scooting off!!

I am going to list some of the stories people have shared with me...so enjoy!

"When my daughter sat on my knee, took control & ran someone over!"

"One of the funniest days in my old job was when a lady lost control of her scooter & drove through a BBQ/summer food display. Jars smashed all over the place, plates & glasses went flying. Made sitting at a pay point a lot more fun that day!"

"My friend tipped me off a bus ramp once. Another friend lost control on a slope & I nearly ended up in The Thames. I actually had to cling onto a lampost to escape the water, passers by helped lift me out!"

"Every time I take my 2 year old nephew to play group, I have to give him & half his class a ride round the hall! It's beautiful how innocent they are that they think a mobility scooter is a fun type of pram!"

"I've got an old USA (Minnesota) number plate on mine, gets some funny looks!"

"My friend & I nearly got kicked out of Chester Zoo for racing scooters & giving backies!"

"I was reduced to 3 wheels once & had to call my dad to drive us home. Started singing '3 wheels on my wagon & I'm not going along'!"

"There was the time mine got stuck in deep gravel & my cousin had to pull me out. Embarrassing but funny!"

"I once got stuck in the mud in front of LOTS of people, none of whom offered to help. I got my revenge on them when I sprayed them all with wet mud once my wheels got a bit of momentum!

I also once knocked over a mountain of toilet papers that were stacked in a perfect pyramid on display.  They all came tumbling down in front of me.  It was their own fault for not giving me enough access in their aisles!"

Hope this has given you a giggle.  Feel free to share your own stories in the comments, I do love a good laugh! xx