Hi, my name is rosebud31563! Terrified that my life is now over, any advice?

rosebud31563

Hi just had 2 operations in 6 days been diagnosed with cauda equina been in hospital salford for 3.5 weeks and still on acute neuro ward, in a wheelchair left leg dead, incontinence, having to take laxatives to empty bowels, 61years old and absolutely terrified that my life is now over. I am scared frightened and so weepy.

noonebelieves

https://forum.scope.org.uk/discussion/132549/hi-my-name-is-rosebud31563

Hi @rosebud31563,

A very warm welcome to this lovely and friendly Scope community. I’m so sorry to hear that you’re going through such a challenging time following your Cauda Equina diagnosis . It’s completely understandable to feel scared and emotional. Please know that you’re not alone, and this is a safe and supportive space where many people understand how tough sudden health changes can feel. I’m sure someone on this forum may have faced similar challenges and might be able to share their experiences with you.

It sounds like you’re being well looked after in Salford hospital, and I hope the Neurosurgery team there is doing all they can to help ease your symptoms and support your recovery. Are there any family members or friends who are able to visit or stay in touch? Also, do you have access to any pastoral care(Chaplaincy/PALS )or emotional support on the ward? You might also be able to access liaison psychiatry support in the hospital if your mental health symptoms feel particularly difficult or overwhelming.If you’re struggling, you can mention this to the staff on the acute neuro ward, and they should be able to refer you to the appropriate services .This might be of help to you.

Please take each day as it comes and be gentle with yourself -just reaching out here shows great strength. If there’s anything you’d like to share or ask, we’re all here to support you.

Wishing you comfort and strength during this difficult time 🤗

MW123

@rosebud31563

What you're experiencing right now is undeniably challenging, both physically and emotionally. Feeling scared, overwhelmed, and even tearful is completely understandable, this is a lot to process. Cauda equina syndrome is life-altering, and the road to recovery can feel uncertain. But please know this, your life is not over!

Fifteen years ago, my sister-in-law was in your shoes. Her recovery was slow and filled with ups and downs, but with physiotherapy and occupational therapy, she made remarkable progress. Nerves heal at their own frustratingly slow pace, but they do heal. Recovery often happens in small, unexpected steps, and with the right support, many people regain far more than they originally imagined possible.

Everything has changed so suddenly for you, and it’s completely normal to grieve the ‘before.’ But please don’t lose sight of the ‘after.’ Right now, everything feels overwhelming, you’re no doubt still in shock, still processing, but hold onto this, healing is possible.

You are stronger than you know, and with time, support, and patience, recovery can unfold in ways you can never imagine now. Sending you a big virtual hug and all the encouragement in the world! xx

rosebud31563

Thank you so much for your kind words of support and that other people have experienced this condition. Still very overwhelmed and shocked and scared. From going from an able bodied person who was never ill always worked to a wheelchair has frightened me to death. My daughter found this forum and sent me the link which i am grateful for and thankyou for replying to my post. Kind regards Sharon xxx

noonebelieves

https://forum.scope.org.uk/discussion/comment/1013123#Comment_1013123

@rosebud31563

Nice to hear from you, Sharon. I can only imagine how overwhelming and frightening this change must feel, especially going from being fully able-bodied, working to where you are now. It’s a huge adjustment, and it’s okay to still feel scared and shocked.

As @MW123 said so beautifully, “healing is possible.” Her sister-in-law’s story is such a powerful reminder that recovery may not be linear, but it can and does happen, often in small and unexpected ways.
Please be gentle with yourself-it’s completely understandable that you’re still in shock. You’ve been through a huge trauma in such a short space of time. Just finding the words to post here shows your strength, even when things feel impossibly hard.
If you feel up to it, it might be worth exploring the Spinal Injuries Association website.They also offer a helpline and some tailored resources that may help if you’ve got specific questions about next steps or need practical support. I’ve heard their advisors are very helpful and kind.
You’re not alone in this, Sharon. I hope you continue finding support in this space, and please remember to be kind to yourself through this process.
Best wishes 🤗

Rosie_Scope

Hi @rosebud31563, welcome to the community. I'm really sorry to hear you've been in hospital and everything has been so difficult lately, that sounds really overwhelming. As others have so beautifully put, it's a huge adjustment dealing with a new health issue so please don't feel like you have to be strong about things all the time. When things settle, it may be worth reaching out for some mental health support or asking your health professionals about counselling as it must have been a big shock for you.

While we won't all have the same experiences on the community, many of us know what it's like to go through a sudden change and deal with the daily struggles of a health issue. You're definitely not alone here, and I hope the community can offer some support and friendship through all that you're dealing with.

I hope things start feeling easier soon ❤️