Petrified- Husband in hospital with transverse myelitis

[Myotis]

My husband was admitted to hospital 9 days ago and has been diagnosed with transverse myelitis, an inflammation in the spine. He is paralysed from the waist down. I have been holding it together for the kids (we have 3- 8, 10 and autistic 15yo) but I am bloody petrified about what this might end up as- whether he will recover, how I am going to carry on. He is getting some signs of movement back but it is slow and I just don’t know how to be strong.
Neither of our families are near by, I do have friends who are supportive but everyone has their own busy lives. Woke at 2 and can’t get back to sleep hence early post.

Oh my love, you must be in such a state. I’ll bet you’re exhausted. 💐

Pretty wiped but have to put on an ‘it’ll be fine face’ for the kids but just no idea if it will be or not.

((Hugs from across the pond)) 🤗

its 3.30pm in the afternoon here.

can you have a warm shower then hop back into bed. The shower won’t wake you up but will relax your muscles.

If he has a bit of movement already, that’s a bloody good sign. It’ll be a slow process.

Is there a social worker at the hospital that you can have a chat too? Or a salvation worker?

🍀🌹sending positive thoughts 🍀🌹

Thank you
God- I wish I was somewhere warm! Snow forecast here today
I don’t want to wake the kids with a shower- have had a cup of tea and read my book but just can’t switch my brain off- worrying about stupid things like money long term if he doesn’t get better even though we are ok at the moment and even though I know it’s early days

im sorry, I have no words, but please be kind to yourself. And that included making sure you eat properly, and do try to rest.

Hey. Hope you got back to sleep in the end. What did he do for a living? Would inability to walk affect his ability to work long term?

I recommend quoting dien any questions you think of. Keep a little notebook by you for this. Then when you talk to the doctors you have that ready, plus you can write down anything they say. I don't know about you but I lost information really quickly when I'm under stress so this might be helpful x

*what does he do

Autocorrect is having fun with tenses today...🙄

Is this post Covid?
I only ask as two friends had similar in 2020 and both recovered, one fully and one to 80% functional.

Very scary at the time.

i'm sorry op.

You are doing amazingly.

You have been so strong.

You have stood up and carried on.

Well done for reaching out, the dark hours of the night are dark indeed.

Sending you all good wishes.

For information and signposting to other agencies have a look at this fantastic charity Back Up, backuptrust.org.uk
They have many different types of support, from the beginning of a spinal cord injury (sci) to mentoring and advocacy, peer to peer, families and spouses as well. Good luck
On another note the Homes under the Hammer presenter Lucy (Alexander) the blonde lady who left has spoken about TVM as it affected her young daughter. If you wake up and are scrolling perhaps look her up for tips/ideas where to go next.
Best wishes to you and your husband and family. Look after yourself. X

Thank you so much for your responses and thoughts, it really is much appreciated- am feeling quite alone
in answer- it wasn’t post covid, he had that last November so seems quite a while ago? He has another autoimmune disorder (ITP) and they think it’s likely linked to that somehow.
I don’t seem to get much time to chat to the drs but I think I might call the ward to speak to the nurses today and see what is happening. Notes are a good idea. Been trying ti get him to record the consultant so he can send it on to me as the hospital is an hour away.
As for jobs, he does have an active outdoor job that he loves, we are a pretty outdoor family so this has the potential to be devastating, although in his current role he could stay desk based as there is a big element of that.
The wee small hours are just so hard.

Nothing useful to add other than good wishes 💐 Hang on in there.

Hey I’m so sorry to read this
i have had transverse myelitis in January 2018. I was paralysed for 3 weeks and was told I had 50/50 chance of ever walking again.
I nearly made a full recovery. My left leg has a slight limp and I have an over active bladder. But I live a normal life. I work full time as a midwife, am a mother to 2 young children.
happy to answer any question you may have ❤️
stay strong
make sure your hubby is receiving IV steroids.
it’s going to be a long road x