I never in the world imagined this would happ... - Pain Concern

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I never in the world imagined this would happen to me!

silverbadger profile image
11 Replies

I'm not sure if I am aloud to post this here so feel free to remove it.

Hi, I have a twisted small bowel, adhesions, incontinence , osteoporosis, crumbling at the base of my spine, Crohns, chronic pain, chronic fatigue and permanent nerve damage in the area where my anus and rectum used to be' I have had them removed'

Over the last couple of years the Pain and incontinence has become intolerable, with many Pain and 'incontinence accidents' happening when I am away from home.The pain becomes worse as my tummy blocks up eventually giving way. ( I will spear you the details).

Anyway I started to control it by not eating for a few days before I went anywhere. Unfortunately although this works I lost a great deal of weight, ended up in hospital and I became critical. So now I tend to stay very close to home

I have started to see a psychiatrist who specialises in digestive diseases, to help with the mental effects of being permanently incontinence and to try and get some sort of life back.

Last week on my way home after an appointment with him I had to run into a large department store 'John Lewis' to use the Disabled toilet. When I got there the disabled toilet was engaged so I waited. After a while the door opened and out came a gentleman and as I approached the toilet door began he shouting at me. Saying that the toilet was for the disabled only and that I am not to use it. A crowd began to gather and one person said to another 'its about time someone said that' while the gentleman continued shouting at me. My embarrassment was accompanied by a very dry mouth and I found I could not speak. I could feel the poo starting to run out of my stoma bag flange and trickle down my tummy. So without thinking I quickly lifted my top. The crowd and the gentleman had full view of what is left of my tummy complete with much scaring and a leaking stoma bag with stream of poo running out the side and down my body and leg. The crowd quick disappeared and the gentleman walked away waving his arms saying ' well that's ok then'.

I washed myself the best I could but was so upset that did not want to come out of the disabled toilet. I waited for ages until I could be sure everyone was gone. I then quickly ran out and found my carer saying that we have to quickly go.

The reason I write this is to ask people to remind their friends and families that not all disabilities are visible and such a circumstance can be horrible for anyone in that position. As for me, well I have found that what little confidence I had gained, with the help of my psychiatrist, has completely gone. And if by some pure miracle that gentleman reads this then I would like to say to that gentleman that actually 'No its not Ok'

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11 Replies
Bananas5 profile image
Bananas5

Powerful and moving post and well done for showing those ignorance people your 'disability;/'/ Would love to know what the 'gentleman' had wrong?

You have a lot to put up with without Joe Public. Sadly it is a fact of life that unless you are in a wheelchair or have a Guide Dog you appear normal.

I am blind. Have been for over 30 years. No Guide Dog just a white symbol cane which no one takes any notice of.. Yup the commonest comment..you don't look blind. My reply? You don't look stupid but looks can be deceptive. It works!

I really really hope you can get help and support through your psychiatrist. You sound a strong person with determination.

Go for it

x

silverbadger profile image
silverbadger in reply to Bananas5

That's a fantastic reply, I think I might use it.

Bananas5 profile image
Bananas5 in reply to silverbadger

Best served when there's a crowd!

x

ssdw1958 profile image
ssdw1958

I feel so sorry for you that some idiot (not the word I want to use but I know I can’t use it here the real word) any way I had this old man give me a dirty look when I had parked in a handicap spot I looked at him and said just watch the way I walk and you will see why I am parked there. I walked about 10 feet turned around and looked at him and said now do you see why I parked there. He turned around and walked away. That is not anything you went through but I have had problems with people using the handicap bathrooms now I walk with a rollator or use a wheelchair and I also need the handicap stole when it is being used by someone not handicap it can be dangerous if you have to go really bad and then you find the person coming out say something stupid that They do have a handicap back funny they are moving better than I am.

Sorry this is so long but I kind of feel your pain I’m sorry you had to do what you did. Yours was much worse than mine. :(

lowlife profile image
lowlife

Some people are so ignorant and Damn right rude. It's non of there business what is wrong with you so you don't have to prove anything to anyone. However I was very impressed that you showed them something that they didn't expect to see and would have loved to be a fly on the wall at that time lol. You should be proud of yourself for proving a point. Life must be so difficult for you but hopefully there's help out there to help you to manage. The trouble with the UK there isn't a toilet around every corner and even if there was we're not aloud to use it unless we buy something from that shop so life must be difficult for you. X

ssdw1958 profile image
ssdw1958

I would like to know why the bathrooms are always I the back of the stores. I know they want you to buy something thing but would it kill them to have the bathrooms in the front of the stores.

Just had to say that.

Spudster1 profile image
Spudster1

Hi well done for showing them what was wrong with you even though it's no one's business my sister has termanal cancer and she likes to make herself look lovely make up hair done nice clothes perfume and when she parks in a disabled spot she gets loads of looks and does she care no if anyone asked her she would tell them straight good on her

Personally, I have found it more beneficial in the long run, to just ignore these ignorant people. I can stay calm and not get wound up which just results in making myself ill. Let them get wound up ~ ignoring them tends to wind them up even more! Concentrate on your own well being, it's hard enough getting through each day as it is without letting some insensitive muppet pull you down. I know this is easier said than done. I have a great deal of empathy for you and what you're trying to cope with, and what you put up with. Keep going! 😊👍

Hope18 profile image
Hope18

What a brave, inspirational person you are! I am truly sorry that you had to go through that but please know, that by doing what you did you showed immense courage and strength! You also made a single track mind think before opening their mouths again! Well done to you for standing your ground and showing everybody that not all disabilities are visible on the outside! Sending you a big ‘high five’ and best wishes for the future! Please do not let one person ruin all that you have achieved so far!!

Sending you big hugs and best wishes!

Xxx

silverbadger profile image
silverbadger in reply to Hope18

Thank you so much for your kind words. D

Hope18 profile image
Hope18 in reply to silverbadger

No, THANK YOU for changing someone’s attitude and thought process towards another human being and for bringing it to the attention of others that all is not as it seems on the outside! I hope he felt thoroughly ashamed of himself afterwards and I hope you continue to hold your head up high as you so rightly should!

Big hugs xxx

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