LUPUS UK
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Feel guilty having blue badge!!

I’ve recently again got a blue badge, I had one in my mid 20’s and now I’m 38 and struggling again so applied and got one with just confirmation of my diagnosis and a bit of supporting info that I’d written.

But... I now feel embarrassed parking because I feel like people are looking at me because I am young ‘ish!’ with 2 small kids and not in a wheelchair which is what people expect.

I really wish there was a different symbol or something as yes clearly I can walk, mostly with a limp or a lot of pain but still can walk.

I’m pretty sure the other day I heard an old lady say to her elderly husband ‘ well I suppose it’s not only 90yr olds that have health issues’ as I guess he’d said something.

Today I parked in the disabled space nearest the trolley park in Sainsbury’s so that people couldn’t obviously see I was in a disabled space.

I do wear splints on both hands/wrists/thumbs and elbow that’s visible and a lower back support that’s not.

They don’t know that I take 22 tablets a day including slow release morphine twice daily with ocassional oral morphine top ups and that I go to bed at 7 pm and have to get my partner to turn me!over in bed as I go so stiff with my lower back I can’t move!

Don’t mean to rant but just wish it was viewed differently x

16 Replies
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Their problem - not yours. People with cancer get blue badges - and most of them have less to show than you do.

You could get yourself a t-shirt with "Not all handicap is visible" on the front and "Would you like mine?" on the back and customise a walking stick to brandish around.

Start using the other facilities for the disabled - including the mobility scooter (you are actually helping the shop as a member of staff has to run the battery down before re-charging it ;-) !)

I hope your rant helped release the annoyance - people are horrible sometimes.

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Ha! Thankyou! That’s cheered me up!

I think because I have 2 small kids too they probably think well there can’t be anything wrong with u!?

I just wish that we had a separate badge instead of the wheelchair logo cis that’s not appropriate for everybody.

I work 2 days a week and work are good with helping where they can. I can park closer to work now which has had a big impact on my everyday life.

Well I didn’t need an assessment or anything so they must have thought I was entitled.

Thanks guys!

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I nearly applied a yr ago but didn’t due to the fact that luckily 70/80% of the time I’m ok to walk ok and manage to work albeit in pain but sometimes it takes a lot to get out the car never mind walking and sometimes I’m out and the fatigue sets in and all you want to do is sleep and the wife is practically dragging me back but remember they do not just hand out blue badges you obviously need one uther wise 100% you would not have got one

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I’ve very often driven somewhere, parked up and been too exhausted to get out the car so reversed and gone back home!

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Been there, done that - not that I have ever had a blue badge. If I couldn't drive there and park near the door I couldn't go. And then I was (wrongly) stopped from driving for several months. So I managed to get here to my flat in Italy (don't ask me how I managed) where there are no essential stairs - what a difference it made living on one level and be able to use the lift. Let me do things again!

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Sara-A,

Don’t feel bad, people have good days and bad days, your badge is approved. I believe you can get a sticker that says I may not look disabled but I am. Try looking at Amazon.

Years ago when my sister was in her 30s, she was always getting looks at supermarkets, she used to see she had MS they soon apologised.

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Exactly! I just don’t know how people can be so rude, as if u would dare say anything! I just think we’ll u can look at the front and see my badge so crack on then!

A woman next to me today huffed and puffed getting out her car next to me bless her and said ‘ god this is so difficult!’ I said ‘yeah I know! And I’ve got 2 kids to put into the car too!’ She said I dunno how u do that! Do there are some nice people.

As u say u have good and bad days, most days I like to do the 5 min walk to school I have the pushchair to hold onto and it causes me pain but I want to do something. I’m usually limping by the time we get there and def on way back!

Thing is I’m not shy, if anyone did say anything to me I’d be well prepared to say something! Tho not sure what as there’s so much u want to say to them it will prob come out in a jumbled brain fog mess! X

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Sara. Don’t feel guilty, you are entitled to that badge. That’s how the majority of folk see it. Keep smiling. Best wishes Kevin

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Please don't feel guilty about using your badge, some people are just ignorant so it's best to ignore them and get on with your life. xx

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Hi, I so know that look from people, my husband has a blue badge, he has good days and very bad days, he has also had words as sometimes they challenge him, I was so grateful he had it as I made him come anywhere I went as I cudnt walk the length of me last year with my lung problem. My hospital is on a steep hill and I swear I would have needed oxygen if he hadn't driven me to it. The extra space makes it easier for him to get out the car as he uses his door to help him out, but I sometimes think I should limp for him as I step out the car. Why should members of the public do that to us, they can't see his heart condition or that he needs two new knees and takes a ton of pills to get by each day. We just shouldn't be made to feel quilty by ignorant people. I'm with you all the way Sara

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Yes I needed the extra room to help me get in and out the car and especially when I have the kids, getting them into their car seats as I have to pick them up with my arms and inside of elbows as cannot pick them up with my hands. So it was really hard getting them in and out.

I also fell over in a multi storey car park trying to get back in my car and people just drove past! Unbelievably rude! I’d have stopped.

If I’m having a better day I won’t always use a disabled space as I feel I can manage better than some people and I’d feel awful taking a space someone in a wheelchair may need. It’s just those bad days that it’s so helpful for.

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Dear Sara_A,

Please don't worry. Just go about your business. Your life, is your business.

I was diagnosed Sjogrens syndrome ?lupus 3 years ago. I had no idea what was happening to me. My back locked, sciatica, too many prescription pills, MRI 3 prolapse discs, finally collapsed. My bed was brought downstairs for 2 weeks. I couldn't walk, weak muscles, couldn't lift, stand well,.... oh, long story...

Now, my children are adults, I could not pick up their children, even their babies! I admire you. I know how your pain is exacerbated, because you are a young mother. That has to be very harsh!

Getting your badge, helps you to be the mother you need to be, as well as helps you, manage daily activities. That is the purpose. That is the point.

Be proud of your desire and determination, to request a badge enabling you, to be the best you can be, despite this awful invisible illness.

I will just add, many years ago, I suffered prolapse discs, during rehabilitation, I too, requested a (short term), badge. I was completing my finals at university, I needed many books, very heavy books, from library. Well, the only way I could carry the books, was to park directly outside the uni library. Thank the Lord, I was granted a badge. Without that very timely support, I doubt I would have got a 2:1 honours degree at all!

My hubby booked theatre tickets as a celebration treat, despite my struggling to walk, so, you guessed it, we used the badge. We arrived at the theatre, we were stopped by concierge, who directed us right to the front door! At the same time, elderly people were walking along with sticks, callipers.... oh, my gosh, we both sloped out of that car, like thieves in the night!!! Now, that was very, very embarrassing!!!

Thankfully, my temporary back problem abated, I gave up my badge, it served its purpose. I was grateful.

You know, you need your badge, just as I needed mine, at that time.

Today? I would perhaps, like a badge, but I don't feel I need a badge. I am retired. I do not have young children. I can rest when I need. My husband drives, we are sorted.

I still pay tax, through pension, and I wholeheartedly, support your badge for your current needs. Enjoy the support it gives you and your children. X

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Thanku so much!! That means a lot for u to say this.

Yes my friend said it should be called an ‘enablement badge’ not disabled badge! As it enables u to do ur daily activities.

I think I just need to man up! Look at all the people who park in them that don’t even have a badge and stroll off into the shop without a care! And there’s me parking so nobody can see me.

I don’t even do my own weekly shop anymore as I just can’t hold the things or bend down or lift or reach for stuff, or pack the shopping plus the brain fog drives me mental it’s too stressful! So I get it delivered and I even used to feel embarrassed about that! I used to think I bet the delivery driver thinks u lazy cow!

I think we all can see from this I just need to THINK less!!! I am a worrier anyway and probably nobody is looking at me or thinking anything about me, like my partner keeps telling me!

It also means that I can continue to work 2 days a week to help support my family and for my sanity and own life!

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Lots of supermarkets will "lend" you someone to help reach stuff you can't manage so you can still choose your own veg and stuff. Ask if your supermarket does it.

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I’m sure they would. When I’ve had issues with the delivery stuff the manager has offered to bring stuff out to me himself!! He said to always just ring him bless him so I’m pretty sure they would.

When I went in the very first time with some item needed returning he showered me with free stuff!! Flowers...literally ran round the shop throwing stuff at me and kept appearing giving me more stuff! So it’s good to know I can call on the delivery manager if need be he even said he’d drop stuff off on his way home if I needed anything!

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Now there is a service to patronise! They deserve to succeed :-)

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