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

Hi I'm Daniel. I had CES, and have had mobility and pain issues since. What's your health journey?

Daniel_2021

Hi,
I've never been in a forum ir anything like this before so not too sure what to do.
In short I had Cauda Equina Syndrome (CES) about 7-8 years ago which left me with nerve damage and some other fun things. As a consequence I was unable to do my job that I loved to self the company which partially caused a mental breakdown and suicide attempt.
I've had mobility issues and pain since then, earlier in the year I had a spinal fusion to help with the pain. That didn't go to plan as when I woke up I couldn't move my arms or legs, the arms returned but not the power in my legs leaving me using a wheelchair. I was also diagnosed with Functional Nuerological Disorder (FND).
I was recently discharged from hospital after 14 weeks including rehab. In all honesty i'm finding tge adjustment really hard, I struggle to admit i'm disabled and then when I see someone who is more disabled than I am I feel guilty that I struggle as much as I do.
The main reason for joining is to see how people have dealt with their health issues and the journey they've been on.
In terms of me i'm a city fan and I love reading. I love the countryside and all things nature, potentially in the future I might like to get involved in making the countryside more accessible for everyone as I think it helps the mind and body.
Hopefully that's the type of intro required, if not then just to cover my back.....Hi, i'm Daniel and new to the group, it's lovely to meet you all ?

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Comments

janer1967

Hi and welcome to the community

Becoming disabled is like a grieving process and is hard to adjust

Take it one day at a time and don't expect too much too soon

Once you accept it you will learn different ways of doing things and a different way of life

I list my leg 4 years ago and the following year became severly sight impaired and its been tough

Get any support you can there are services out there to help

If you have any further questions just ask

Daniel_2021

Hi,
Thanks for replying. It does feel a bit like grieving, i'm mainly angry and resentful at the moment.
Prior to this I was always possitive and just liked having fun. I know I will return to that state it'll just take time.
Have you changed/adapted any of your hobbies or interests since having your issues?

Daniel_2021

Hi John,
My wife has mentioned counselling too, I'm on the waiting list for a certain type of therapy but it has an 18 month waiting list.
My GPs are really good so it's something I need to chat to them about to get the ball rolling.
Thanks for being so honest. I've had two replies and feel part of the community already.
Do you work for scope? Is this something you did prior to becoming disabled?

Daniel_2021

Hi @Teddybear12 thanks for replying, it's interesting that your talking about your daughter as I was thinking maybe my wife could join so she could get support too, it's impacted her just as much if not more than me. She's an amazing lady and makes life worth living.
I think that's great that your daughter wanted to win on merit and not due to her disability. I'd love to be able to draw but I struggle even witg stick men. Thanks for replying ?

Daniel_2021

@woodbine that's lovely what you said about your wife. My wife and I have been together for 10 years, I don't know how she's put up with everything, she's just incredible.
That made me chuckle about the fish, i'm really clumsy so i'd end up falling in too.

janer1967

Your wife is more than welcome to join as well

I didn't really have many hobbies b4 I was disabled as I am a single parent and had a demanding full time job so little time other than being taxi driver

My son was 10 at the time so was a big adjustment for him too. He was my rock and my reason for carrying on

Cher_Alumni

Hi @Daniel_2021 and a warm welcome to the community from me too

How's it going today?

Adjusting to life with impairments and becoming a wheelchair user can be really tough so I appreciate you telling us more about your story and reaching out to others who get it and have 'been there'. It sounds like you've been proactive in terms of accessing therapy and definitely do contact your GP to look at treatment options, and potentially counselling. Our online community is here 24/7 too so please do lean on us for peer support, if ever you want to vent, rant, natter or just have a bit of fun! Here's our different chat categories to browse and our coffee lounge where you'll find lots of varied discussion.

I'm sure you're aware but just incase those troubling suicidal thoughts reappear, be reassured you can speak with people anytime of the day. For example:

Call The Samaritans on 116123 or email jo@samaritans.org.
Text 'SHOUT' to 85258 to speak with a trained crisis volunteer from SHOUT
Find a local urgent NHS mental health helpline

While if things become too much and you think you may harm yourself, call 999 and ask for emergency services or go to A&E.

I'm going to email you now to just run through some additional support us at Scope might be able to offer you and your wife, so please keep an eye on your inbox. Best wishes and have a lovely Thursday.

[Deleted User]

Hi @Daniel_2021 and a warm welcome to the community! Thank you for sharing your story, I can relate as back in 2017 my health rapidly deteriorated, and ended up in a wheelchair by late 2017. In March 2018, I woke up one day to find myself in a hospital bed unable to move.

They're still not sure as to what caused me to become unconscious which resulted in me being admitted to hospital. It came to light that I had Transverse Myelitis, which is where the spinal cord becomes inflamed. Due to the areas of my spinal cord which were affected, I lost the ability to use my arms, legs, and move my head.

I spent a total of 9 months in hospital and rehab, 6 months of that were spent in rehab having intensive physiotherapy and occupational therapy. It is difficult adjusting, and while I have accepted that I'm disabled, I still have days where I'm in denial, angry and emotional. This is completely normal.

Take things one day at a time to prevent overwhelm, try to focus on what you can do instead of what you can't.

We're always here if you need to talk

chiarieds

Hi @Daniel_2021 - & welcome to the community from me also. I'm sorry to read you've gone through Cauda Equina Syndrome, & it's consequences. I don't think I can add to the words of wisdom above, as I have a genetic disorder which just gradually worsened, so my experience is different.

I've been a physio (so now do the exercises I used to teach), & we had a secondhand & antiquarian bookshop for nearly 25 years, so, as you can imagine I'm a bookworm too. Unfortunately, so is my son, & my spare bedroom, which is also my library, has been partly taken over by his books, which seem to have taken up residence! I moved to live near him 6 years ago, & he & his wife help me out enormously, whilst I get some dog sitting duties when they're both at work all day.

You may be interested in the following thread & link about CES: https://forum.scope.org.uk/discussion/83410/hi-my-name-is-luckyles? Anyway, it's lovely to 'meet' you too.

Daniel_2021

@Ami_Host thanks for being so honest, I had less time in hospital/rehab overall but a similar transition to both including OT etc. How are you getting on now? Have any of you feeling in you head, arms or legs returned if you don't mind me asking.
I'm finding at the moment it's day by day, i've noticed I have a bad start to the day and then a better afternoon before a bad night. Based on that i'm trying to rest during those times but it's just so boring.

Daniel_2021

@chiarieds Hi, how have you found doing what you used to teach? My physio was strict in a nice way, she'd make me get so far and just as i'd reach the end she'd extend it a bit!! do you do that?
I keep thinking of getting a kindle as the house looks a bit like a book shop but I don't think you can beat holding a book and returning to your favourite one time and again despite how much it's aged.
Thank you so much for including the CES link, I didn't even think of searching for that.
Have you found reading has helped you cope at all or have there been days when you have been unable to read and found it frustrating?

chiarieds

Hi @Daniel_2021 - I'm very grateful for my physio training, as exercise has really helped me try & maintain my now limited mobility, & got me going after I fractured my hip on top of everything else.....I was determined to walk properly again without limping, which I managed. I hope it doesn't sound bad to say my main interest was neurological disorders, & that has stayed with me. After I qualified I worked in the regional spinal injuries unit for a few months, whilst waiting to start work with children with Cerebral Palsy, which was what I wanted to specialise in. Yes, I was probably a bit strict with my patients too, but hopefully in a kind way; you really do become invested in wanting to help your patients improve, & I had some lovely patients.

Having been a physio also helped after I'd had my family, & I could see that whatever I had was affecting them too. So I researched & found we had Ehlers-Danlos Syndrome (hypermobile joints) associated with a neurological problem, Chiari I Malformation......that neurological interest came in handy again! I raised awareness that these 2 disorders can be associated here in the UK, with the help of a New York neurosurgeon. By a bit of serendipity he was finding some of his Chiari patients surprisingly had Ehlers-Danlos Syndrome at the same time I was thinking the 2 disorders must be associated from reviewing the medical literature. I was asked to write a chapter about Chiari 1 Malformation in the last 'Management of Ehlers-Danlos Syndrome' book, which this NY neurosurgeon kindly proof read for me.

When we had the bookshop, I used to get through up to 150 books a year; absolutely nothing like that now. Reading helps on some days, but not always. I expect like many here I have days I can cope.....I have a constant burning pain from lower than my waist to the back of both legs the moment I'm upright, but I refuse to give in to it & lie down....& days when it's a battle. I also had a fight with myself in learning to pace myself, even tho I knew it would be helpful. I've also found that stress worsens my neurological pain, & I just can't read when my mind's racing all over the place.

I totally agree that there's nothing like holding a physical book, & prefer hardbacks. I'm trying to reduce my books to just keep the ones I know I'll want to read again, but then my son lets me borrow his books (that were only supposed to be in my spare room for 3 months, which has become 2 & a half years!) so I'm not much further forward. What sort of books do you enjoy reading?

MadeInTheUK

Hi Daniel

I just this minute joined and saw your post. I also have CES so it was quite welcoming to see a fellow sufferer, although of course I wish that neither of us had to meet this way!

have you joined any of the groups on Facebook? There are quite a few really supportive group specifically for Cauda Equina syndrome, they helped me massively to identify what was happening to me after my surgery in 2017 and come to terms that this is probably as ‘recovered’ as I’m going to get, especially as the after-care for CES is pretty much non-existent.

I know exactly how you feel, today my pain level was suicidal and I had to put my arms around my teenage sons neck and basically hang of him in order to walk around the house. But then there are other days where I have really good days and I think am I just exaggerating or imagining it? there are so many other people who are far worse than I am. Coming to terms with the reality of many of my abilities being reduced or taken away has been hard and I have resisted labelling myself as disabled but that is what I am.

Tori_Scope

I'm glad to see that you found @daniel_2021's post @MadeInTheUK

today my pain level was suicidal

Would you mind explaining a little more about what you mean by this? Did your pain levels make you feel suicidal?

MadeInTheUK

Tori_Scope said:

I'm glad to see that you found @daniel_2021's post @MadeInTheUK
today my pain level was suicidal
Would you mind explaining a little more about what you mean by this? Did your pain levels make you feel suicidal?

I woke up and I was paralysed for the first half hour, I took morphine, tramadol, naproxen and I have a fentanyl patch. My son helped me out of bed and had to almost carry me on his back around the house. The pain was unbearable everywhere. My feet, knees and hands had all swollen up and the loss of dignity having to depend on my son to drag me around just made me feel completely devastated. I couldn’t get the pain under control for a good 5 hours and even then it was only just about bearable. I just felt like I don’t want to be alive like this, I can’t get away from it and it’s exhausting. I feel like I have no future, I can’t date, I can’t have sex, I can’t go out and the pain meds barely touch it. It’s not as bad today and I can rest for the next few days. I’m not usually this negative but it wears me down sometimes. I would never harm myself but some days you just want out from it.

Tori_Scope

That's understandable @MadeInTheUK. It's quite common for people to feel as though they just want a way out, rather than wanting to die as such.

That being said, it's important to talk about these feelings and get stuff off of your chest. I hope the community can be a supportive place for you to do this.

Have you ever spoken to a mental health professional about your frustrations and feeling down at times?

I feel like I have no future, I can’t date, I can’t have sex, I can’t go out

I know it's easier said than done, but it can be good to try and reframe these types of thoughts. You might not be able to have the future you thought you might have, but that doesn't mean you have no future. There are plenty of other ways to find meaning and purpose, to socialise, and generally enjoy life, despite challenges such as mobility issues and pain. Have you tried to think about the things you can do, rather than what you can't?

[Deleted User]

Daniel_2021 said:

@chiarieds Hi, how have you found doing what you used to teach? My physio was strict in a nice way, she'd make me get so far and just as i'd reach the end she'd extend it a bit!! do you do that?
I keep thinking of getting a kindle as the house looks a bit like a book shop but I don't think you can beat holding a book and returning to your favourite one time and again despite how much it's aged.
Thank you so much for including the CES link, I didn't even think of searching for that.
Have you found reading has helped you cope at all or have there been days when you have been unable to read and found it frustrating?

@Daniel_2021 I apologise for my late reply, how have you been getting on? It was slow but gradual progress of regaining movement. I went from being dependant on a hoist to being able to walk with a walking frame with the support of 1 person for a few metres.

I've since learned to be a little more confident in transferring from chair to chair with my walking frame by myself - it's taken a long time to get to this point but it's immensely worth it!

Rest is boring, but it's part of the recovery process. Always here