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

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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

Assertiveness & saying it how it is...or not!

I have been thinking quite a bit about this.   How when people ask how we are - this applies to everyone not just poorly people - we say "fine"! It's like the automatic response whether we are or not.

When I first went to the M.E Clinic not long after I was diagnosed I had group therapy. They spoke to us about being assertive & said it wasn't such a bad thing to tell people that we weren't actually fine when they asked the 'how are you' question.  They said by acknowledging that actually we weren't great wasn't a bad thing & suggesting saying something along the lines of "I'm not too good today actually".

I took this concept on & it did help. I still sometimes tell people now when I'm not good if they ask. But most of the time I never really feel well anyway so if I told everyone how I really felt every time they asked (which is always the first question in conversation!) I'd do their heads in!  I find that it actually depresses me too if I always say how rubbish I feel!!  It's easier in a way just saying you're ok.  I suppose I choose who to say how I really feel to depending on who it is.  I probably do certain people's heads in actually, no need to name names as you know who you are (sorry)!!!

People who know me well though can tell straight away when I'm particularly bad if they see me in person, as I either look like a vampire with pale face & dark eyes (I do love vamps though!) or when they ask how I am I do a non convincing smile & say "I'm ok"!!  In fact that seems to be my automatic response, I seem to either say "I'm ok" or "not too bad".

When I speak to my fellow M.E sufferer friends & we ask how each other are, we understand when it's a rubbish day without having to explain.  My friend made me giggle the other day as I had sent her a message & asked the dreaded question! Her response was "pretty much average". And that totally sums up how every day is for us. It would be great to be able to say how well I felt when someone asked.  It never happens though!

It also doesn't mean that when I say I'm ok that I really am not as sometimes I do feel ok (it is a good word I think as it covers all bases!!).  No days are good ones, some are better ones but I've had this crappy illness long enough to just have to deal with it. I'm not saying I don't find it difficult as I still do but hey ho!

I have noticed recently that I use the term "it's a bleugh day" on my worse ones! I think it's a brilliant term to describe it :-D

So... if you know me & I tell you how I really feel when it's a rubbish day I guess you should feel honoured haha ;-)

xx

Carers

I've talked a bit previously about having carers but I haven't gone into too much detail about it so thought I would talk a little more about it.

When my daughter was very tiny & I had relapsed with my M.E - see post here - it was suggested that I could get carers to help through Social Services.  My initial thought was 'no chance'!  I mean, how much more of a failure would that make me? To accept I couldn't cope with my illness AND a baby. As soon as you hear Social Services mentioned you automatically think the worst.  I didn't want my baby taking off me! The thought of having strangers in the house wasn't particularly appealing either .....how wrong I was though!

I spoke to a few people who knew a bit more about it all & soon realised that I actually probably would benefit from some help.  I self referred to adult Social Care & with support from my GP & Occupational Therapist at the M.E clinic who I had been seeing for a few years, I was assigned a social worker.  She came to do an assessment & couldn't have been more helpful.  She couldn't believe how much we had been struggling & it didn't take very long to put things in place.  When I realised what help we would get I was really emotional & very grateful.  My husband had been signed off work but needed to go back & my biggest problem was needing to rest regularly so I knew the baby would be safe while I did.

I was set up with Direct Payments which is when you get money from the council paid directly into an account which is used only to pay the carers.  My social worker had found a suitable care agency for me & I had a meeting with the owner when we worked out when I would be having care.   The carers, as well as watching my daughter while I rested, would be able to do housework, make food & drinks, go shopping for me, help me with my daughter as required & various other duties if I needed.

My first experience of a carer was not a good one. She appeared at the door & I got a shock as she looked really masculine so I wasn't sure she was a she at first! She was with us the whole day while my husband was working & she didn't have a clue about how to do even the most basic of stuff in the house.  She mopped the floor & it was worse after she had finished.  She had clearly never used a mop before! I remember asking her to make some spaghetti bolognaise for dinner but I ended up having to do most of it as she didn't know how.  Who doesn't know how to make a bolognaise!?  Then she proceeded to sit down & eat a big bowl of it!!

She was with me the following night & turned out to be no help whatsoever, she actually made me feel worse so I rang the agency in tears & they brought a different carer to meet me who thankfully was lovely.  The other carer left not long after, good riddance!

I began having regular carers & the difference it made was huge. I rested when my daughter slept then in between naps too.  I didn't have to waste energy I didn't have on making food or doing housework. I never asked them to do anything major but the little things made such a massive difference.  I have always said to my carers that they don't realise how much they help. If I was given carers I didn't like I said so to the company!  That's one thing I have always felt strongly about, that I will not have anyone coming in who I don't like or who drains me & makes me feel worse.  I did become close to some of them & despite them leaving we are still in touch.

I have had reviews each year from adult Social Care & they have always been really supportive.  My care has continued & I know how lucky I am to get it.  I recently changed to a different company & they are brilliant.  My carers are so lovely & feel more like friends than carers, something the previous company didn't like.  Not sure why as when you have people in your home you need to feel comfortable with them. The new carers can take us out in their cars, take my daughter out & do the school runs which makes such a difference.

Anyone who thinks it would help them to try to get some care, please be assured (in my experience) that it is nothing to worry about.  I honestly don't know where I would have been without it.  When I think back to feeling like a failure I can see why I did but now know that getting care was the best thing that could have happened.

Accept help. Don't feel ashamed. Don't feel embarrassed.  Don't feel like you're a failure.  Be brave & be strong.  You are a warrior! ♡

xx

Disabilty benefits & medical

Once upon a time before I got ill I was a hotshot lawyer.  Not really.. (the lawyer part is true) but I had a job I'd worked hard to qualify for & was doing ok!  With my job it was good socially too, which meant lunch out & after work drinks sometimes.

Fast forward several years & instead of that I now have to prove to the benefits people that I really am too poorly to work.
Yeah..because I just love being like this.
I just love feeling like absolute rubbish all the time.
I just love needing carers to help me.
I just love feeling totally useless!

The reason for this post is because I have just had a letter from a company called Atos, who some people may have heard of as they've been in the press on & off for a while.  They have given me a date for an appointment for a medical assessment very soon.  Atos carry these assessments out on behalf of the DWP.  They have been criticised massively for twisting what people say & for being more bothered about completing questions on a computer screen rather than listening to what people say. There are horror stories galore!

Despite me sending various paperwork & a report from my social worker who did a review earlier in the year regarding my carers, I have still been called in.  I am really anxious about it but I don't know why as I am genuinely poorly & unable to do a lot of the stuff they require for you to be fit to work.

The stress of having to go for it will flare my M.E symptoms up even more & I will really suffer for it.  As much as I am trying not to worry it is difficult not to.

It just makes me really angry as you hear of so many people claiming benefits when you know they have nothing wrong with them. Why are those people not found & their benefits taken off them when people who are entitled struggle so much to get them?

To have to claim benefits in the first place when you were used to working & bringing in a good wage is pretty soul destroying. Filling out the forms where you have to delve deep into your condition & think of all the stuff you are restricted doing is really depressing.  And now I will have to go over it again face to face with someone assessing whether I am in fact fit or unfit to work.

I wish I was.  But hey ho, such is life.

Misconceptions

I have been thinking a bit about how to non poorly people (or non spoonies as we say in the chronic illness world!) that life with chronic illness/M.E might appear to be not as bad as it actually is.  For example, people sometimes suggest that because we are stuck in the house a lot & often unable to work it must be really good.  How it must be brilliant to not have to get up for work with the alarm at silly o'clock.  I possibly would even have thought the same pre illness but the truth is it is far from good.

The reality of living with chronic illness is so different to how people may imagine it. Seeing these programmes on tv where it shows people living off benefits, who have no intention of working, really doesn't help. Who in their right mind would choose to live, or not live if we are being literal, this life?

Who would want to wake up after not sleeping properly & not feeling refreshed (ever) & have to get through the day full of unpleasant symptoms?  Would anyone really?

I would do anything to be able to be "normal" (or just not poorly!) & go out to work.  To be able to spend time socially without it wiping me out for days.

Another misconception is that when we are in wheelchairs due to our bodies not being very good to us, it appears a miracle when we stand up or actually heaven forbid walk! George Takei posted a picture yesterday which went crazy on social media & alot of people were really disappointed in him. This is the picture...

It is wrong to assume because someone is in a wheelchair or using a walking aid that they cannot walk at all.  Or to look at them disapprovingly when you see them stand up to reach something!  We use wheelchairs because our legs or our bodies have basically let us down.  We are sometimes still mobile.  It's not for the fun of it trust me!  (Although my daughter thinks so, she loves getting rides on it even now age 5!)

I had a pretty distressing experience on the way home from holiday when my daughter was a baby.  I had been really poorly anyway during the week, it was the start of a massive relapse. We were at the airport in Ibiza & the special assistance lady was pushing me through security in the wheelchair, seperately to the rest of the family.  I suddenly realised that I had everyone's passports so I stood up to call them & out of nowhere all these Spanish armed police appeared & took my (own) wheelchair away, shouting at me & bascially accusing me of faking needing the wheelchair.  I got really upset & the lady who was helping me had to pretty much convince them that I did in fact need it.  It really shook me up.  Talk about ignorant.

When people are using mobilty scooters, it is almost more acceptable to onlookers when they get out of it as people expect them to be able to walk a bit etc.  It shouldn't be any different for wheelchairs though.  I would actually love a scooter as it gives me much more independence but I wouldn't be able to lift it into the car & I can't drive far anyway so not sure how often I would use it. If anyone wants to throw one my way though I won't say no ;-)

There are some extremely ignorant people out there which I have touched on previously in another post here but for every rude one there are lots of nice ones! Not all illness/disabilty is visible but it is very real & every single person living with it, for whatever reason, is amazing.  I have met some fabulous people recently which I should hopefully be able to talk more about soon as there are exciting things in the pipeline. But for now please just remember not to assume it's easy for anyone living with (chronic) illness as it most definitely is not xx