"You don't look disabled"?

bevt2017 · August 2018

Hi everyone!

I had an interesting disscution with my son a few weeks ago. And I wanted to see if other disabled people, have had similar experiences.

For those who don't know me.
I've only been disabled for just over 2 years now.
I'm proufoundly deaf and also have pheripharal neuropathy, spasms, ataxia, virtigo, non specific vascilitus, anxiety, stress and depression.

I also need to use a wheelchair when i go out.

I was out on my weekly day out, with my husband and my son, when i noticed 3 women talking.
One of the women looked straight at me, roll her eyes and shuck her head.
She then said something to the other women, then they also turned, looked at me and did the same.
I did look around to see if they was maybe looking at something else (but they wasn't).

I was quite upset and angry about this, and asked my husband if he had seen them doing it? "He said no"

My son then said "it's proberbly because you don't look disabled"?
I said "well what does a disabled person look like"?
He said I don't think that, but I bet they do.
I said so it's more acceptable, if people can see your disability?

Then I started thinking is it them or is it me with the problem?.
Do disabled people judge other disabled people on there appearance?

I really hate the word "invisible disabilitys" because it's like I'm saying my disabilitys are not real.

Maybe I should of gone up to the women and asked if there was something wrong?

What would you have done in my situation?

Thanks for any replys

Charli · August 2018

Hi bevt2017 my husbands disabilities aren’t visible on the outside but I’m really protective I would have definitely asked what they’re problem was which probably isn’t a good idea, I feel people are so judgemental these days, you get nasty people in all walks of life, try not to take it personally some people are just ignorant and to be honest they’re probably really insecure about themselves, you should never judge anyone as a disability could happen to anyone

Ami2301 · August 2018

Hey Bev,

I know too well how upsetting this can be and that you have to question yourself. If they were talking about you then clearly they have nothing better to do. I've learnt over time to just focus on who I'm with, when I first became disabled, I'll admit, I was extremely paranoid that everybody was either staring at me or talking about me. I'm always here if you need a chat xx

DavidJ · August 2018

@bevt2017
Hi
“You don’t look disabled”!!!
Yes Bev bear this phrase almost every day !! I have been disabled now for almost twenty years so I am well versed with that phrase .
I have all four limbs and can stand upright for short periods but I don’t look disabled!! When you think about it it has to be the most stupid phrase ever uttered ! It must be a throwback to the time disabled people had parts missing I think !
I did a training session once for Council employees on disability . My party trick was to get out of my wheelchair and sit on a normal seat next to it . When they came into the room I asked them who was disabled . Everyone said the person who uses that chair. So I slid across the seat and sat in the wheelchair and asked the same question . The looks on their faces was priceless. So when I am in the chair I am disabled get out of it I am not because I don’t “look” disabled
I have to confess I don’t know what a disabled person looks like either because we are all different and have different disabilities . Some are visible and some are invisible .
Its the staters ignorance Bev and you have to learn to ignore it . No matter where you go there is always one ignorant person and they are not with worrying about it . Those close to you know and so do you and that’s all that matters # developthickskin!!
In time you’ll notice that they look over your head height rather than look at you !!

DavidJ · August 2018

Apologies if it doesn’t read properly !! Spellcheck went silly Type your comment

thespiceman · August 2018

Hello @bevt2017 Thank you for your post. .

After all I have known you most days you send me supportive messages and may I add very grateful.

Understanding why people are talking about you is never ever in my view. Not respectable and well rudeness and ignorance. No body likes this.

I once went out on a date with a lady who had problems. With every body looking and saying untold things and just being unpleasant. She was an attractive blonde. So she found me. Probably the last choice. Anyway her story was every time going out they the whispers the other women would comment on her.

Her looks, her figure and every thing else. So went to a crowded restaurant. Her in panic mode there all talking about me. She hollered can not stand it.

No it not you there looking it is me. Why ? Got them thinking has it not. How a good looking lad he says . Lad with a disability getting the girl of his dreams. End of story.

The point being no matter how you look and what you are. There are those in society who see faults and cracks and worse make a judgement on others.

I have met lots of people with disabilities, illness who have mental health issues . Mainly anxiety and how others perceive them to be.

Even my good self . Had this in my head and the feeling of others were being hurtful and full of spite. Then I realised it is OK to be the way we are. Need acceptance. So now I still get the odd comment from people but there again.

Then I realised that I was wasting time and energy talking, thinking about them and how much harm it is doing to me. One time arguing with them. Yes I thought why.

I always say walk a mile in my shoes...

Speak soon

@thespiceman

bevt2017 · August 2018

Hi everyone!

Thank you so much for your kind words of support.

Hi @Charli
Your husband is very lucky to have you.
It's such a shame we have to deal with ignorant people.
I'm not use to this feeling of vulnerability and feeling scared to leave my home. I do hide behind my hat, so that I can hide (Sad really).

@Ami2301
Hi sweetie good to hear from you. Hope you and the family are doing ok.
I do try to ignore them, I just get so angry.
My husband says people don't look at me as much as I say they do? I beg to differ on that.

Hi @DavidJ
That's awesome! Something I would of love to have done to get a reaction.
20 years WOW I've only been going through this for 2 years. I suppose you have to develop hard skin, it's just a shame we need too.
My daughter's school as arranged for scope, to go into her school and talk about all disabilitys.
I think more schools should educate children.

Hi @thespiceman

Thank you for being so supportive and helping me.

As you know I do struggle with my anxietys.
I just have to learn how to except, that people are critical of everyone not just me.

I like the bit, were you told her they were all talking about you.
That's because you are an "Italian stallian" 😉

Thanks everyone
Bev x

Ami2301 · August 2018

Hey Bev,
All is well and good thank you, hope you and your family are keeping well too

I know exactly what you mean, Ewan used to say the same to me and in time I realised I was focusing more on people who I didn't know and caring more about what they think when I should have been focusing on myself. I know it's easier said than done but their opinions don't matter, you are a beautiful and strong woman! ❤️

Markmywords · August 2018

Hello @bevt2017 .

If I was ever told I didn't look disabled then I'd tell them that they "don't look like an ignorant moron so clearly appearances are nothing to go by."

I'm sorry but there are bigger problems to deal with than the whispers of people who can't harm you.

Discrimination is everywhere and can be much worse. I had to grow a thicker skin. I judge such people as having less worth than I so automatically I feel better

DavidJ · August 2018

@Markmywords i love that comment re the morons !!!
mine is -well at least when they are talking about me they are leaving someone else alone !!
@bevt2017
I hope all goes well at your daughters school. Pity the parents can’t sit in on it , but it’s a start .
My Cup is always half full never half empty . Where we are concerned I always remember that there are nice people out there too but being nice doesn’t sell newspapers ! Only bad news does .stay positive and enjoy life everyone

DavidJ · August 2018

Here’s a question for everyone !!
What DOES a disabled person look like??
I need help with this because I don’t know !! Do you ?

bevt2017 · August 2018

Hi @Ami2301

Awww thanks sweetie 😀
The family is great thank you.

Ewan is right! I need to ignore the negativity.
My husband always says, my bladder is to near my eyes lol.

Great work your doing in the community by the way.
It's good to have you back ♥️

Hi @Markmywords

I don't think I could do that lol

My husband was verbally attacked once.
We was in a shop, when my husband asked a women if we could get by.
She was fumming and gave my husband a dirty look. When he appologised and said thank you, she shouted at him "so you should be".

When I looked up everyone was starring at me and then started clapping.

My husband then told me what had happened.
The people in the shop was actually applauding my husband.
Some of them even shouted at the women, for being so aggressive and rude.

Instead of me thinking about how strangers supported us.
I just wanted to go home and didn't leave the house for weeks.

Hi @DavidJ

Thank you!

I couldn't agree more about the parents.
Maybe the children can educate the parents.

Thank you everyone!

Markmywords · August 2018

Tiny Tim I expect, @DavidJ. "God bless us, every one. We're so grateful that you let us live in your lovely world, your honour."

@bevt2017 , you're a better person than they could ever be.

Self-entitlement is the biggest disease of our time

SethLaa · August 2018

I remember when I was walking (sort of) around B&Q when a lady approx 60yo commented to her partner that persons (me) should not be in public when drunk, you should have seen the look on her face when I 'loudly' told her that I suffer from MS before offering her partner my deepest sympathy. It made my day

Ami2301 · August 2018

@bevt2017 Haha! Love it! Thank you that means a lot

❤️

Stella_10 · August 2018

Hello Bev, you are not alone. I face the same kind of thing at my work place and that too from my superiors. They do not believe that I have disability after giving all kind of medical reports and report from OH. I never show my disability- I try to do things smartly and why one should show? It's absolutely my personal thing. It's hard and I try my best to do my work properly but there is no thanks or any motivational word by them. After reading all these from you guys I feel bit relaxed that I am not alone. When I say to my colleague or superiors they either ignore or laugh at me. I do feel upset sometimes but then some how I try to be strong. Some times i do feel to leave my job but then my daughters and husband encourage me to continue work. Don't know how long I will be able to continue but I am trying my best.
Loads of love to you lovely people our there xx

bevt2017 · August 2018

Hi @Stella_10

That's shocking!

Your co workers and especially your superviser, should be supporting you in work.
Is there a manager you could speak to, or someone higher up?
Maybe having a meeting with them, to talk about how you feel and how they can support you in work.

Maybe talking to one of scopes advisors? (your rights in the work place).

No! Your not alone

You will always have support from us lovely people at scope 😀😀

Take care
Bev x

thespiceman · August 2018

Hello @Stella_10 Pleased to meet you . Reading your post. I do think you need to speak to some one who deals in employment law.

Understand there are several issues here. First one . All employers have to make adjustments to members of our community. Who are working. No matter what the illness or disability is.

I believe that you need to speak to either a Union Rep. If that is not possible you need to speak to CAB. They can offer and support you with any advice you may need to take.

Second I would concerned you are made to feel you are being bullied at work. Being laughed at sneered at, made fun. Being ignored is a form of bullying and harassment.

Trust me I have been there so many times. Problem is you fear for your own job security and well being. I have all I can add is a lot of mutual respect for you. To continue.

I am concerned as many of our community will be.

After being on so many of these Back to Work schemes in all. I got was discrimination, harassment and made to look small.

Promises of adjustments and help never came. Then even when got a permanent position. It never came.

All I can add there are laws and I would consider speaking to CAB or other employment advisors.

Please give our helpline a ring 0808 800 3333. They could help with any further action you may have to take and give you any advice, information.

Remember we are here. To listen, give you advice, support and wish you well.

Please take care.

Always in prayers and thoughts

@thespiceman

Stella_10 · August 2018

Thank you Bev and Thespiceman for you kind words. There is another new thing happened. I was off sick for few weeks and they called me for a chat twice in between because they were not following the DDA rule. Anyways that was sorted so I am back to my work few weeks before and 2 days before they asked me to pre filled form of return to work. When I asked why this is pre filled and signed by the manager and lune manager, they said it is because we had meeting with you few weeks before and forgot to take your signature. I said that meeting took place at the time when I was in sick leave. I said can I have a copy of this because I will be signing the form. They refused and said that i can view when ever I want as it will be in my file. I took the form, wrote this form was pre filled and not written by me and signed. Then my the Manager came to me and said gave me excuse that we discussed previously etc etc. When I said I do not agree to this as the discussion what ever we had was at the time of my sick leave, so he said we will have Return to Work meeting on Monday. You can well imagine how I am still been bullied and harassed.
Thank you once again and will speak to the number you gave me, soon x

thespiceman · August 2018

Hello @Stella_10 Thank you for replying back to me. This does concern and worry me.

Understand you need to talk to some one in the employment law sector.

I do not want to distress you further. All I can say am horrified by the whole thing. Also feel and do understand you need some support here.

Having been in a similar situation once before.

All I can say.

I would consider talking as I said CAB . Good with employment problems and situations like this. Will be useful.

Glad to hear you are going to call our help line.

Please let the community know how you get on and remember we are always here.

Pleasure to meet you.

Take care

@thespiceman

bevt2017 · August 2018

Thank you @thespiceman

Awesome advice 😉

Hi @Stella_10

I'm so sorry your going through this.

The spiceman is right, its totally unacceptable how your being treated.
You need some help and support.

Being bullied in the work place is unacceptable.

I hope you contact the helpline and please let us know how you get on.

All the best
Take care
Bev x

o5jessica · September 2018

DavidJ said:

@bevt2017
Hi
“You don’t look disabled”!!!
Yes Bev bear this phrase almost every day !! I have been disabled now for almost twenty years so I am well versed with that phrase .
I have all four limbs and can stand upright for short periods but I don’t look disabled!! When you think about it it has to be the most stupid phrase ever uttered ! It must be a throwback to the time disabled people had parts missing I think !
I did a training session once for Council employees on disability . My party trick was to get out of my wheelchair and sit on a normal seat next to it . When they came into the room I asked them who was disabled . Everyone said the person who uses that chair. So I slid across the seat and sat in the wheelchair and asked the same question . The looks on their faces was priceless. So when I am in the chair I am disabled get out of it I am not because I don’t “look” disabled
I have to confess I don’t know what a disabled person looks like either because we are all different and have different disabilities . Some are visible and some are invisible .
Its the staters ignorance Bev and you have to learn to ignore it . No matter where you go there is always one ignorant person and they are not with worrying about it . Those close to you know and so do you and that’s all that matters # developthickskin!!
In time you’ll notice that they look over your head height rather than look at you !!

@ David hi, you so right, I had years of this ,I used to take part in disabled froums local council, did I got run over,then I got comments from even disabled people in the meeting. Cause my large wheelchair.
Yet my days modelling pr I reminder my self , that words they used Hurt me lot,
Each I sensed had problems seeing me now in wheelchair,
I stop going as I got much harder to cope yet good on you , you made me laugh today x

Mum72 · September 2018

My son has had Autism Spectrum Disorder all his life! He is now 50! His condition is a mental handicap. There are so many ways I have to help and assist him because he doesn`t understand the way the world works, can`t understand financial things, can`t take in information! Has a poor memory! Doesn`t understand meaning of words therefore will use the wrong word in a sentence and I have to explain that the particular word he`s using doesn`t mean what he`s trying to convey. I answer his letters as he hasn`t the mental capacity to do it. I have to make all the claims for him, explaining his problems as he can`t do it! And yet he looks normal and people can`t always see he has a handicap! It`s a nightmare!!

Waylay · October 2018

My disabilities are invisible. I look OK much of the time, even when I'm in a lot of pain, because there's no point whinging about it, is there? I used to sit in the "normal" seats on the bus when I was able to travel (which wasn't that often), partly because I liked to feel normal when I could, and partly because there might be people feeling worse than me who needed those seats.

When I was having a bad back spasm but couldn't afford a taxi, I used to sit in the disabled seats on the bus. Every step is agony when I'm in spasm, and my mobility is very limited, so those seats are a godsend! However, three times in 2016-2017 I had really bad experiences while sitting in those seats. Two separate times an elderly person (one man, one woman) stood right in front of me and loudly started lecturing me about being young, healthy, and clearly lazy and entitled, because I was sitting in the seats reserved for elderly people (if I'd been more bolshy I probably would have loudly pointed out that they're for disabled people and Mums with prams/young kids as well). "How dare you", and "the youth of today", etc. (kinda funny I suppose, given that I was 42 at the time). Both times I noticed several other passengers in my field of view nodding slightly, or looking at each other and smirking, as if they were pleased to see me getting my deserved come-uppance. It was humiliating, embarrassing, guilt-inducing... And of course, I was in severe pain and on a truckload of opioids, and my mental health problems were being triggered, so I froze up and started thinking that everyone on the bus hated me. It was horrendous.

The third time was on a London bus. I was going from King's X to my partner's house, and I was in a lot of pain. A woman got on and stood next to me. After a few minutes she said something like, "I have a disability. Can I have your seat?" Perfectly polite. I explained that usually I'd be happy to, but that I was also disabled and I was in a lot of pain, so I really couldn't at the moment. She said, "Oh, no problem", and asked the next person along, but the guy sitting next to me started making disgusted "tchtch" sounds, and giving me sideways glances. (He was sitting in the disabled seats too, so I'm not sure what gave him the right to judge!) After a few minutes he turned around and said to the disabled woman, "Some people will use any excuse!" I don't know what she said, as I was starting to panic. I got off the bus at the next stop, sat on the pavement, and called my partner in a panic. They came and got me in a taxi.

Funnily enough, when I have a serious back spasm I go extremely pale, get really sweaty, tremble, and my lower back, buttock, hip and thigh contract and become stiff, so I sit in odd positions. I have to take a lot of opioids, so I assume I look fairly spacey and glassy-eyed. I clearly don't look healthy. People who know me can take one look at me and tell approximately how much pain I'm in. Several of them told me (after these events) that it's quite clear that there's something wrong with me. However, these people were so certain they were right that they felt just fine castigating another human being for (it felt like ages, but was probably only) minutes at a time. (My partner pointed out that people might think I was a drug addict going through withdrawal. Great.)

Anyway. I've now developed such severe anxiety about taking public transport that I barely ever do it these days unless someone is with me. I lost my PIP for 11 months (just got it back) which meant that I couldn't afford taxis very often, so I almost completely stopped attending appointments, going to therapy, etc... My agoraphobia got much worse, too.

Those people obviously either didn't realise or didn't care that some disabilities are invisible, and probably have no idea that they traumatised me severely.

SociableSeanTB · October 2018

@Waylay public transport has also led to quite a few 'interesting' experiences for me. On more than one occasion, people have questioned why I have a disabled bus pass, including asking the driver to confiscate it from me and phone the police to report my 'benifit cheating' I'm sure they would soon realise why I had one if I started having a seizure on the bus, or if I tried to drive

Even when I got on the bus, on crutches and at a hospital bus stop, the driver once pulled away whilst I was hobbling along sending me flying across the bus and crashing into people who were seated in the front row by the second set of doors. Luckily, a number of people ran up the aisle and berated the driver until he stopped the bus and I could be helped up! For every nasty comment or idiot, there are people who will stick up for me.

JulesA65 · October 2018

Ignore them. I have depression, how can you see that? I get worked up and my voice rises when frustrated or anxious. It how can you explain to strangers about how you are feeling when your head is a mess and confused. Ignorance is a big problem especially for people with mental health issues or disabilities that are not visible such as my osteoarthritis in my knees. Don't let them get to you. You are probably worth 20 of them

cracker · October 2018

I have had that many times. Even my counselor has gold me I have good colour n my face. I am flushed be cause of the narcotics. Even when I double over from a spasm, the disregard that. They think that because I can walk, there is nothing wrong. They do not see the pain, the fact that I cannot use my left arm.

I just let it go. (Italics appeared out of nowhere).

nannybel · October 2018

I totally empathise,my copd + osteo arthritis has me sat on a mobility scooter outside my house wiv me portable oxygen machine over me shoulder.i get on public transport 2 go in2 town only wen essential as i get condescendin looks ,like,im 54 + on th outside i hav my own weird style + i like bright colours + fashion,i feel people r lookin down at me 4 holdin them up while th driver puts ramp down 4 me + i drive in + park in pushchair bay(often mums hav 2 collapse their buggys 2 make room 4 me)i put a sticker on front of me scooter reads"im speedin coz i need a poo !) Breaks th ice !
Thanx 4 my rant guys x take care x👌😍👍❤🌞♿🌹👄⭐🗿

bevt2017 · October 2018

Hi @SethLaa

Good for you 😀

Hi @Waylay

Thats shocking!
What is wrong with these people? Don't they have any common dencency.
This is why I will never get on a bus.
I know how you must have felt and I'm sorry you had to go through that.

Your right! people need educating more about disabilitys.

Scope has a program, were they go to high schools to educate children on disabilitys.
I told my daughter's school about this, and they have arranged for that to happen.

Maybe our children can educate their parents, so we don't have to deal with people's ignorance?

Take care
Bev x

bevt2017 · October 2018

Hi @JulesA65
Good advice
Thank you 😀

Hi @cracker
Thank you 😀

Hi @nannybel
"I need a poo" love it.
Maybe I will buy some stickers for my wheelchair?

Thanks guys
Bev x

Waylay · October 2018

Thanks, all.

susan48 · October 2018

I saw a great car sticker it said

Not every disability is visible, please don’t judge.

KarmaMar · October 2018

I have had local police force for many years going around telling everyone that I am mentally ill yet they refuse point blank to record the many abuses I have received as hate crimes. *shrugs*

Gwendoline1 · October 2018

Hiya everyone, I’ve only just seen this posting so sorry for coming in late. I’ve only needed to use my wheelchair in the last few years. I will never forget my first time in it. I was on a day out with my dear husband, my gorgeous son and his beautiful girlfriend, my husband was pushing my chair when nearly all the people passing by either old or young stared at me as if I had 2 head. My husband was so shocked and upset he wanted to take me home as it was his way of protecting me. I said no and my son changed over pushing me because he wanted to lighten the mood and all of a sudden started running with the wheelchair with me in fits of laughter and his words were “ there we are, that will give them something else to stare at” it did lighten the mood greatly.
I find people either talk over you or look the other way. It doesn’t upset me very much now i just dismiss the situation most of the time.
I know it’s easy for me to say this, I’ve got a brilliant need of family around me, life’s to short to waste precious time on other people unless is something positive. Thanks for reading my little story 😀😀😀

Gwendoline1 · October 2018

Hiya KarmaMar, How disgusting of the police. I so dislike people who want to make people’s life a misery. What is wrong with these people? I like to plod on with my life, it’s changed dramatically for me over the last number of years, but to subject people to misery is awful. I hope everything changes for the better for you. God bless you 😀😀😀

debbiedo49 · October 2018

This is a great post. Thankyou

bevt2017 · November 2018

Hi @Gwendoline1

I love Your story, about your son grabing your wheelchair and running with you in it.

Made me smile 😁😁

I wear a hat, so people can't see me lol, It really helps my anxiety to.
Bev 😀😀

Gwendoline1 · November 2018

Hiya bevt2017, Hahaha, my heart was in my mouth haha!
Im glad you’ve found something ( your hat ) that helps you. I have good days when I hold my head up high and think ‘ look if you want to, I don’t care’. Other days I feel so uncomfortable that I don’t want to go out.
To many days I can’t accept the changes in me, I don’t tell my husband and my children because I want to be strong for them. I used to work full time as a night manager in retail ( amongst other jobs) speed home so my husband could go to work, take the children to school,clean,get the food ready and fit sleep time in. Life was busy, I was in control of me, it’s all gone now. The big BUT is, the most important things are left, my darling husband and my beautiful children and their brilliant husband and girlfriend.
I can moan and groan with the best at times, but I’m so lucky. So we’ve got to keep smiling and enjoy life as best we can.
I appreciate the most simplest things in life, only this morning I could see a spiderweb glistening in the sunshine with frost on it, glorious.
Hope you are well and looking after yourself. Any updates on appointments?
Wrap up warm! 😀😀😀

cracker · November 2018

bevt2017 said:

Hi everyone!

I had an interesting disscution with my son a few weeks ago. And I wanted to see if other disabled people, have had similar experiences.

For those who don't know me.
I've only been disabled for just over 2 years now.
I'm proufoundly deaf and also have pheripharal neuropathy, spasms, ataxia, virtigo, non specific vascilitus, anxiety, stress and depression.

I also need to use a wheelchair when i go out.

I was out on my weekly day out, with my husband and my son, when i noticed 3 women talking.
One of the women looked straight at me, roll her eyes and shuck her head.
She then said something to the other women, then they also turned, looked at me and did the same.
I did look around to see if they was maybe looking at something else (but they wasn't).

I was quite upset and angry about this, and asked my husband if he had seen them doing it? "He said no"

My son then said "it's proberbly because you don't look disabled"?
I said "well what does a disabled person look like"?
He said I don't think that, but I bet they do.
I said so it's more acceptable, if people can see your disability?

Then I started thinking is it them or is it me with the problem?.
Do disabled people judge other disabled people on there appearance?

I really hate the word "invisible disabilitys" because it's like I'm saying my disabilitys are not real.

Maybe I should of gone up to the women and asked if there was something wrong?

What would you have done in my situation?

Thanks for any replys

I have had this happen many times. How demeaning for all of us.

cracker · November 2018

This has happened so often to me. (Sorry, I somehow put my response into the text). I echo "What does a disabled person look like?"

There is stigma against the mentally and physically challenged. I am glad we have this forum where can be who we are.

bevt2017 · November 2018

Hi @Gwendoline1

I'm ok, how are you.

You have a lovely family, who are very supportive of you 😀

I'm the same i have my good and bad days like you.
My husband takes me out twice a week, just for a coffee and to get me out of my prison cell lol.

Also like you, I haven't been disabled for long.
But im grateful for people like you and the community, who have helped me through some really difficult times.

Yes! I have an appointment with my nuerologist.
I write to him all the time lol.
I sent him a thank you letter about finding the vasculities doctor for me and told him what she's doing for me.

I also told him about my eyesight and the operation, so I think that's why he wants to see me?

I see the ENT doctor next Friday and my vasculities doctor said she would see me there. 😀
She's lovely and I feel more positive about finding a diagnosis.

Yes you keep warm too.
My friend made me a blanket for my wheelchair.
Keeps me cosy 😀

Hope you have a lovely weekend.
Bev 😀😀

bevt2017 · November 2018

Hi @cracker

Hope you are well.

I just think its people's ignorance.

In my day, we was tought to respect the disabled and the elderly, you just don't see that anymore.

Me to! I get a lot of support from the community and scopes team.

Bev 😀

Gwendoline1 · November 2018

Hits bevt2017, Lovely to hear from you.
Like you I know how lucky I am to have a supportive family.
There are times when I get frustrated, partially because I can’t/wouldn’t accept my limitations. I’ve always been a very independent woman and find acceptance of help, even from my brilliant family, can grate me. I’m my own worse enemy, quite a lot of the time I’ll try not to retaliate by declining help or support because I know I need the help. I’m getting better at accepting. I’m sure I’m not on my own.
Im so pleased that the cogs of the nhs are starting to move for you, fingers crossed it won’t be long when you’ll be letting us know what treatment they’ll be giving you 🤞.
My son and his girlfriend are here at the moment ( they bought a house just round the corner from us a year and a half ago), my husband as gone Christmas shopping with our daughter ( she lives with her husband about 1 mile away) for my presents 😁.
Fingers very tightly crossed I’m hoping next week me and hubby will go out and about doing a little Christmas shopping. I find a number of shops are not wheelchair friendly, especially at Christmas when they are bulging with stock. I do most of my Christmas shopping online, I still try to go out because I love everything about Christmas. All the religious side, Christmas lights, Salvation Army band just everything.
Finally my son is taking me Christmas shopping for my husbands presents. Like most places now there are big retail parks. Well he’s booked a few days off in 2 weeks and we’ll go on one of the better days for me.
It so lovely having a gossip with you and many others on here. Take care and I’m sure we’ll have many more chats. Again chuffed things are starting to move for you.😀😀😀

Gwendoline1 · November 2018

Hiya cracker,
Ive found since having to use a wheelchair I’ve grown another head hahaha. I’ve come to the conclusion that you won’t change some people’s attitude so it’s best to ignore them.
I refuse to waste valuable time on worrying what complete strangers think about me.
There are times though that it can upset me, usually when I’m being ignored and they speak to my husband. The shocking thing is some Doctors do this, so how are we to expect the lay person to behave!
I too am glad the this forum exists so we can have chats like this. Look after yourself. 😀😀😀

bevt2017 · November 2018

Hi @Gwendoline1

I'm totally with you there, I'm always frustrated I can't do anything.
My husband always says, he will never be able to do things my way, so I need to let him do things his way.
(Drives me nuts) lol

I mean it's not like I'm asking to cut the edges of the grass with a pair of scissors like I did lol
My neighbour's thought I was nuts 😂😂

I hate having to use my wheelchair when I go out.
Not just because people stare, but because It makes me feel vounrable.
I was out the other day and my wheelchair Broke.
Thankfully my doctor as done a referal for a new one, but i don't know how long that takes? as I bought this one.
Serves me right for moaning lol.

Aww! It's lovely your family live so close to you 😀
I've already started my Xmas shopping, I love Xmas with my children.

I told my doctor, about what the vasculities doctor is doing for me, as it wasn't her who referred me.
She saud I've got a lot going on, but its all positive.
(She's made up for me).

Yes! I love our little chats.
Talk soon 😀😀

axwy62 · November 2018

Being stared at in the street used to annoy me.

Now every time I see someone staring I stare back, smile and say hello. Most people at least smile back before they look away.

I was thinking of giving them a reason to stare by respraying my wheelchair with purple glitter and putting fairy lights around the wheels but my son said he wouldn't be seen in public with me if I did and I sort of need him to help with the shopping bags.

bevt2017 · November 2018

Hi @axwy62

That's awesome! 😀

That's something my husband would do to my wheelchair, if I'd let him lol.

axwy62 · November 2018

If you can't beat them ...

Gwendoline1 · November 2018

Hiya bevt2017,
Are you sure your not my mirror image hahaha, I always used to cut the borders in out garden with a scissors hahaha I’m glad I’m not the only nutty person hahaha.
Super pleased for you with the hospital, you must feel there’s a little light at the end of the tunnel!
Axwy62,
That sounds absolutely brilliant! I’d spray mine leopard print, if it was possible hahaha and sparkly gold handles. I wonder what my husband would say hahaha! My daughter would love it.
All take care speak soon.😀😀😀

bevt2017 · November 2018

Hi @Gwendoline1

Lol! Maybe? I was thinking that myself 😀

I've always worked like yourself and was the only female manager running 2 sites (including the men).

Joined the police force (special constabulary) when i was 22 and did my diploma in floristry, with distinction throughout.
Who says you need GCSEs lol
Even the school I went to, i went back and did my Oxford computer course.

But I love being a mum and yes a house wife.
My favourite thing to do on my days of, was gut the house.
I even did a friends house once, i loved it lol.

Hi @axwy62

Join them 😀

Gwendoline1 · November 2018

Hiya bev,
Haha, my role was normally male oriented, so the men I used to managed quite often could be difficult mmmm saying that so could the women haha.
Youve done really well for yourself, police maybe not for me really difficult job take my hat off to you. Flowers I love so a florist great! Computers used to be quite a part of my work ( still rubbish though)
I too absolutely love being a mam and a wife. My favourite things to do would be to scrub the house from top to bottom and make a lovely meal for everyone to sit around the dining table. Sure you are not me! hahaha.
These are the things I grieve for. Never mind a least I’ve done it, like you.
Take care, we’ll compare notes next time!😀😀😀

cracker · November 2018

So I am not the only one with the grass, but I didn't use a scissors, I use a serrated bread knife.

I grieve for this, too,, and for digging in the soil.

bevt2017 · November 2018

Hi @cracker

It's good to know, it wasn't just me then lol 😀

Gwendoline1 · November 2018

Hahaha cracker, You are now an honourable member of the nutty gang. Didn’t realise there was so many of us. Hahaha all take care 😀😀😀

cracker · November 2018

Well, I also talk to and pat my plants and say Goodnight to them.

I have a thriving garden.

uniquejourney · December 2018

i have that, and because im young no one believed me. (im in secondary school)
and the looks people give you when your out and about. especially if your in a wheelchair and then stand up and walk for a bit.

defeatingdisability · January 5

I get this a lot I have people coming up to me after we have parked in a disabled spot or as I’m coming out of the disabled toilet. I have written a blog post all about it. Feel free to check it out . Hope it helps.

https://defeatingdisability.com/2018/12/05/dont-judge-a-book-by-its-cover/

telscope · January 5

I know what it sounds like your all going through.
I have epilepsy & may look a normal person, when I walk along the street.
I once had a seizure in a supermarket, I fell into a display just inside the entrance. Many people thought I was drunk. When I came around I saw people, including staff & police standing around me. I was wondering what was going on.
On another occasion I had a basket of shopping in my hand, when I started having a blackout & was walking out of a store without paying. Luckily a member of staff recognised me & told the police & management of the store I was epileptic. Later, when I returned the store a manager, who spotted me on CCTV, came across to me & politely asked me if I was OK.

cracker · January 6

I am glad it worked out for the best.

I had an incident when I was walking in the rain in NYC and went to the Ladies' Room,. It was freezing in there, and I got hypothermia. Shook so badly that I couldn't get up off the toilet. The police were sure I was on drugs and took me to a detox center. I asked some hot tea, wrapped myself in a dry towel and ran out into the street to get a cab home.

Is your epilepsy being controlled at all? There are also service dogs who will warh you about q seizure and push you into a safe place.

I can't imagine how difficult it is to live knowing that may seize. Good for you that you have'n't stopped going out.

bevt2017 · January 6

Hi @uniquejourney

Hope your doing Ok.

The only advice I can give you, is to ignore them.

They are just ignorant and don't know anything about disabilitys.

I know scope have an amazing program, were they go to schools, to educate children on all disabilitys.

Maybe the children can educate the parents.

Take care 😀

bevt2017 · January 6

Hi @defeatingdisability

Hope your doing Ok.

I will check out your blog.
Thanks

bevt2017 · January 6

Hi @telscope

Hope your doing Ok..

That's shocking, how awful for you.

Do you carry an emergency card with you, I got mine through the carers.
I have one on my bag and one in my purse.

It says on the card:
ATTENTION someone is responsible for my care. In the event of an emergency contact this number immediately.

They have all my conditions, and what medications I take.

bevt2017 · January 6

Hi @cracker

Hope your doing Ok.

That's shocking!
I would of been so scared, if someone had done that to me.

Great advice about the dog by the way.
Take care 😀

"You don't look disabled"?

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