Mum of 3 with a spinal cord injury. AMA

[knicksfan]

AMA

Was your injury due to an accident?

What level is your injury and how does it affect your mobility?

How do things like hunger and nausea feel now? Do they come from the brain and so there's no difference, or do you experience them in another way now?

@Citylivingwithdogs yes my injury was due to an RTA. I'm lucky to be alive

@LivLemler my injury is level l4/5 and level l2/3. Although all but two of my other discs are degenerated and prolapsed onto but not across my spinal cord.
My mobility is amazing considering this. I can walk very short distances with crutches. Other than that I am wheelchair bound.

Do you suffer chronic pain and if so how do you cope with that and still enjoy life? I injured my back last summer, nothing as serious as yours, but I have had constant pain since then and am trying to find ways to accept it will always hurt but I still have to seize every moment and enjoy life because if I do not then what’s the point? I also have three children.

At what point after the accident did you become fully aware of your spinal cord injury, and how did you feel?

I'm a paramedic and one of the most heartbreaking things I have ever witnessed was a guy realising that he was completely paralysed from the neck down. It was an isolated injury, so this happened during assessment in a&e after the initial 'excitement' had calmed down and the ed dr did a deratomes examination... You could just see the horror in his face. This was a decade ago now and it still haunts me... Utterly horrendous!

One of the a&e nurses stayed on for 3 hours extra after the end of her shift so that he could have someone to sit one to one with him and calm him down every time he went into a panic attack.

Did you have your children before or after your injury?

Did you suffer any PTSD after the incident?

When you dream, can you still walk etc.?

Apologies if these are insensitive questions, feel free to ignore if so.

Do you feel depressed or angry about your injury? How do you cope mentally with the limitations it has brought?

My mum became paraplegic when I was a teen. Does it worry you that your children might have to take on carer roles?

You sound wonderful and so strong

How old are your children? How old were they when it happened?
Have you accepted it?

I have chronic pain and it affects my life massively
I've struggled to come to terms with it mentally! Mainly I feel guilty for my children!
How do you deal with this?
Not that I believe you should feel guilty or anything ... just wondered how you are coping mentally?

X

Also
Is your partner supportive?

@TempleOfBlooms that's such a difficult question. I can't remember what it feels like to not be in severe pain. I can't remember what it feels like to be comfortable.
I use pain relief at times and I find patches work best for this but they aren't ideal.
It's really hard emotionally because I find at times when the pain is at its worst but I still have to get something done like get to work or go to the toilet I need a massive amount of adrenaline to be able to do the things I need to, I have to pump myself up for the painful things, psych myself in the zone. But once I've done the thing I just end up generally moody or pissed off because I've had to get my fight or flight going so much just to do something. But the feeling of being incredibly lucky to still be able to do a lot of the things I get to is immeasurable, even things like days out with the kids.

@Cyw2018 that sounds horrific how awful for you. It was my accident that caused the damage but I walked away from my accident. It was medical negligence following the accident that made the damage long lasting and permanent. I was in hospital for 2 weeks getting worse and worse. I walked in with very little sensation in my legs and when I came out my life had changed forever. If they had operated straight away i would still have the damage to the spine and discs but I don't think my spinal cord would be damaged.

@Cyw2018 I've had my children after my injury. I didn't ever think that would be possible

@unadventuretime don't worry it's fine! I do suffer ptsd although not nearly as bad as what I did. I think sometimes too much trauma is just so difficult to heal from.
When I dream I'm me as I am now. I've genuinely forgotten what it feels like not to be like this it's been so long.

@ShovingLeopard I feel upset and pissed off and like it's unfair for a fleeting few moments every few days when I am physically exhausted but as quick as the thought enters my head it's out again. It's not even worth it

@thereinmadnesslies yes it does worry me but I do have a really supportive partner and I think that helps massively. That must be so hard for you and your family. Did you have that kind of role?

@user1499786242 that's so lovely. I was only 19 when it happened so I've had a lot of recovery time before I had my children. I had them afterwards. I am coping mentally really well I think. I hold down a job and I manage with lots of help at home. It gets me down when I see things I could be doing or when I can't run after the kids at the park but everybody has things they could get down about. I have my quality time with them in other ways, sat on the floor doing arts and crafts eating pizza, that sort of thing.