Feeling ?depressed ?overwhelmed about 'disability'

[Kirova]

I know I am being silly, and I feel embarrassed to talk to anyone about this in person, so I'm hoping someone might tell me to pull myself together here.

I had surgery for cauda equina back in the spring following (and possibly caused by) a traumatic birth. Although the surgery went well and a lot of my symptoms have improved, I have some residual nerve damage which causes various issues. One of my legs is a bit weak and I tend to limp as I get tired, although this is improving with physio. I also get quite bad pain in my lower back (and this has been worse since returning to work). The most impactful though, is that I have an almost total loss of bladder and bowel function, which hasn't really improved much at all.

Since returning to work about a month ago, I've met with occupational health and discussed some possible reasonable adjustments for my 'disability', but I haven't really managed to ask for, or even identify, what I might need. I just can't think of myself as having a disability and I feel like a bit of a fraud! And I don't really know what would improve things.

I was managing quite well, but a couple of days ago I had a big accident in public and was in a mess, couldn't find anywhere to clean myself up for ages (okay, 10 mins realistically, but it felt like ages) and then had another accident on the way home which was almost as bad. I won't go into too much detail as it's probably a bit too much information already, but things have been very unreliable ever since and I feel anxious about doing anything or going anywhere in case it happens again. Which is not great when it's the summer holidays and I should be spending time doing things with my kids!

I just feel really anxious and despondent about it and I am not sure if it's ever going to get better and how I'm doing to adjust if it doesn't. Realistically, I think I have a bit of a bug or stomach upset which has made things worse, but I feel stupidly panicky at the thought of having to go out in public and do things. And I should be at work on Monday, so I'll have to get over it by then!

I need to pull myself together...

Hey OP, sound really tough and alot to deal with. Understand that you'd be scared to go out, you prob. do this already but whenever you are planning to go out you need to know where the toilets are beforehand so you can make a swift b line there if the worst does happen and pack a small bag expecting the worst to happen. Are you wearing incontinence pads etc? Easier said then done but please do try to continue going out, if you start avoiding it it'll get harder and harder to make yourself, you can still go out but might need to do bit more planning until things settle, hugs and love and good luck!

Have you been referred to your local bladder and bowel service? I only have experience of this in a paediatric setting but they were great, and I can imagine they might talk with you about what OT might be able to do to support you at work.

Sometimes services are so keen to be 'patient-led' that they don't tell you what they can actually do/what's available because they want the initiative to come from you and for you to have control of what's happening. But it's infuriating: how can you know what to ask for if you don't know what they can offer?!

So talking to the b&b team about what adjustments you might ask for could help, maybe?

Thank you for the replies! I do see a continence nurse and have exercises to do and so on, but the problem is that it's caused by nerve damage and it is hard to say if / how much it will recover. At the moment I have no real sensation and no control, so it is tricky to manage.

I know it is important to keep pushing myself to live a full life and do things, but my confidence is really low these last few days. I take lots of precautions and "just in case" preparations, but the other day everything failed me and that was an unsettling experience.

Occupational health should have some suggestions to make.

I'm disabled and when I was working so got referred and I asked what other recommendations they had if any. (I use a wheelchair and required access to loos quickly).

Don't beat yourself up for how you feel OP. It's natural to be stressed, upset and worried about having had accidents in public and the prospect of having more. This is precisely why such conditions are considered a disability. They impact on people's mental and physical health and affect their ability and confidence to go about ordinary daily life. It's hard to adjust your mindset to thinking of yourself as disabled, especially if you're at a phase of hoping to make a full recovery (however unrealistic that hope may be) so the situation feels temporary. Or if it's something you've become so used to it's your personal version of normal and you've forgotten how far from others normality it actually is. If you didn't have this condition though, you wouldn't have any worries about going out in public, you wouldn't limit your life or consider limiting your life in any way due to these worries, because you wouldn't have these type of accidents at all, or have to go everywhere fully prepared for them or have to wear incontenence products.

I know you haven't asked about this and perhaps aren't interested at this time, but it's best to have knowledge and not use it than to not have the knowledge. So, if you ever wanted to, you might qualify for claiming PIP due to incontinence (and whatever other symptoms you have which may be affecting your life). It's not means tested and you can claim whether working or not. You might think that's unnecessary at the moment, but if you think about the best way to manage your condition, it's possible you're going to end up having more time off sick than someone without the condition or need to buy new clothes more frequently etc. If your company doesn't pay sick pay so all you get is SSP, the money from PIP could make the difference between you affording to live or not affording to.

In future I'd definitely be going off sick if you have a stomach bug. Most people would anyway so as not to spread it around, but if you're having accidents due to it not only does that increase the risk of others coming into contact with the germs and catching it, but it's an indignity you don't have to put yourself through when you could stay home until the bug has passed.

I know exactly where you are coming from OP, disabled and constantly worried about needing the toilet and not making it or having little to no warning at all.

I have recently tried the supplement called Jude and believe it has helped me though it's still early days I'm only my second month

Here's a link :

www.wearejude.com