nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

Hi, my name is Emily_Emz33!

Emily_Emz33

Hey

I'm new to this online community and I'd love to feel like I'm not alone. I'm new to disability. Last year I was rushed into hospital and diagnosed with Cauda Equina syndrome and rushed in for urgent spinal surgery, I'd lost all feeling from the waist down, lost bladder function and became severely depressed. It's been the hardest 16 months, I spent 10 months in hospital rehabilitating and learning to walk again. I am so lucky to be able to use crutches now but I still have drop foot, inverted ankle and daily, constant excruciating pain. The pain will never go away. The pain gets me down. The pain makes me feel like a burden. The pain makes me feel trapped in a body that I didn't ask for. I'm 33 and had a total hysterectomy at the age of 30 and on hrt which is hard enough and 12 months later went trough emergency spinal surgery. I cry for the life I feel I've lost. I've lost a career I absolutely loved, I've lost my ability to be active. I loved to cycle and go to the gym. I loved to dance. I loved being out with mu children. now I can't walk more than 10ft without being in agonising pain. I've gained weight. I don't like the person I see anymore. I have 3 children and feel like I can't be the mum I want to be. How do I begin to accept what has happened to me over the years. How do I begin to enjoy this new way of life I have to adapt to? I'm struggling to accept everything I've been put through over the years, I feel angry, lost, trapped.
I hope you're all doing well. I know life can be cruel and so tough but it's communities like this that keep us fighting, the support helps us to fight another day.
Keep smiling xxx

Find more posts tagged with

Comments

Richard_Scope

Hi @Emily_Emz33

I can't relate to ever being able-bodied but I can absolutely relate to the pain and the feeling that you have a body that you didn't ask for or want. I am sorry to read that you have endured so much during the last 16 months but reading between the lines I can see that you clearly have the spark and strength to come through this. It will take time for you and everybody around you to adjust, but you will! You will learn to live life in a different way and still succeed even though things seem so dark at the moment.

You are a valuable, unique human being. You are not alone. We are always here for a chat.

steve51

Hi @Emily_Emz33

Welcome I hope that you are having a good day ????

Please have a good look ? around our site/community????

If you need any help/support getting around please please let me know?????

Many thanks ???

GizmoTiddles

Hi @Emily_Emz33
And welcome to the forum
I can sort of relate to where your at.
At a very early age
5.5yrs I had a bad accident and had life saving surgery and a long recuperation.
Missed a lot of schooling until a special school . Then was taught that a positive attitude was they way to do things right.
I excelled in sport ,boxed for the school.
Working life was mostly manual as a long distance HDV driver my own boss and hard graft then a series of injuries laid me low and the end of a useful working life as I knew it .
There were times I thought ,wt* am I doing still here,and got very low. Sometimes I still do.
I have 3 siblings and 2 lovely grand children
Nowadays I look more like a up and coming Sumo wrestler ,and keeping the weight off ,being less mobile is a challenge on its own but I do what I can .
Pain management over the years has been one big challenge various pills & potions different Drs different medication, osteopathic ,bone setters ,home grown ?
But the brain still works good ,a little forgetful at 68yrs but I still enjoy a challenge and can still smile and laugh with the grandkids .
I'm on the downwards slope in life now but I'll go out with a whoosh ,not a whimper
Hopefully you still have a long life in front of you to enjoys your children and poss grandchildren
So keep your positive attitude and smile and cherish the god times
Cheers
Gizmo

CJM

HI Emily,You've had one heck of a time but good to see you reaching out to a community with a wide range of experiences and knowledge. What was your career?

I hope you don't mind but I'm going to ask about your pain and if you've heard of Scenar? I've used it myself with good results it is not TENS but does work using electrical impulses. Let me know if you want more details.

Hope you have the chance to smile today!

CJM

thespiceman

Hello @Emily_Emz33 Pleased to meet you welcome.

Thank you for joining and sharing. Please can I say we as a community are here to support you. Give you a place you can be listened to.

Yet we as a community need to help and support. Give you words that can have some purpose and meaning.

Having to adapt and be aware of wanting to deal with the disability is never easy. I understand. To help and give you some reassurance.

I am one of the team of community champions who guide and give information, advice to new members when they first join the website.

I have been on line and found there is an association for your condition. This I hope helps.

https:// wwwcaudaequinauk.org,uk.org.uk.

General helpline 0800 989 0053

Emailinfo@caudaequinauk.org.uk.

Please I wish you the best and remember we are here anytime.

To ask anything we as a community can advise on. Be a friend.

Always here.

Pleasure to meet you.

Take care

@thespiceman

Emily_Emz33

Hi @CJM I was a cardiographer at Birmingham QEHB for almost 10 years. Absolutely loved every minute of it. The patients made the full days on my feet totally worth it. I miss it terribly!
And in answer to your question, no I've not tried scenar. I did use a TENs and it made my back pain worse. It was awful!
I hope you have a lovely day ?

Emily_Emz33

Hi @thespiceman thank you so much for attaching the Cauda Equina website. I will definitely have a look into that, thank you ?
Keep smiling

Emily_Emz33

@GizmoTiddles wow! You have had one hell of a journey but your positivity most definitely shines through. You've got some true inner strength.
I'm usually just like you, positive and not letting anything drag me down for long. I guess I'm just going through a bit of a low point which I'll get through and bounce back again.
Keep smiling and being so strong. You're amazing ?

Emily_Emz33

@steve51 @Richard_Scope thank you both for you're messages of support and understanding!
I hope you both have a wonderful day.
Keep smiling ?

thespiceman

Hello @Emily_Emz33 Thank you very much.

We are just here to help and be supportive. Remember I do understand as do lots of the community.

This is a place for you to come and find what you need. Be asking to yourself are there others like my self here. The answer is yes and we can be friends.

I have to tell you I was born with my disability and took me ages to adapt and be find acceptance.

Know now have acceptance but every day is a struggle. Also being here and finding comfort and solace with members like yourself. We all care and share.

So please can I say anytime want a chat or feel lonely always some one here.

Pleasure to meet you

Take care

@thespiceman

steve51

Hi @Emily_Emz33

Thank you very very much ????

We are all here to offer both “help & support”

Please let us know if you require any further advice ⛄️

Many thanks???