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Recently disabled and struggling to cope with not being able to be an active mum

reenie

Hi. Not sure if this is the right place to look for advice and support for my situation. So please let me know if not applicable. Thank you.
I became physically disabled on 30th June 2017. It took 6 months of tests and fearing my brain was the problem before I was diagnosed with progressive deterioration of the lower spine in January 2018 after a hospital stay just before Christmas due to my mobility getting worse.
I am really struggling with not being able to be an active mum. I hate constantly telling my youngest I cant do things with him.
I've booked a gp appointment today to ask for help with depression caused by my restrictions. I'm 34. The only option left for me is risky surgery which I'm still waiting to find out if the consultant thinks the risks out weigh the benefits. I had to close my small part time business and now my husband has to quit his job to help care for me and our sons.
I was a long distance runner for years , worked my allotment, walked miles through the country with my dogs. This living life on the sofa is making me feel extremely suicidal. I wouldn't be still alive dealing with this if I didn't have children.

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Comments

Pippa_Alumni

Hi @reenie, and welcome to the community! It's great to have you here.

It sounds like things are really difficult at the moment, and I'm so sorry to hear that you've been struggling. Although I'm not a parent, I can relate to experiencing a complete change in lifestyle due to disability, and know how frustrating this can be.

You've taken a really important first step by booking a GP appointment, I really hope they can support you. Please remember that you are a member of our community and we appreciate you. If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at jo@samaritans.org. You might also benefit from reading MIND’s information on how you can help yourself.

I can imagine that parenting with a disability can feel really isolating, but I hope it helps to know that you're not alone. You may like to check out our disabled parents discussions to find others in similar situations. I'm also tagging in @mossycow and @cher77 who you may like to chat to. I hope this helps, and do keep us updated with how you're doing!

reenie

Thank you for your reply. I will definitely check out the disabled parents forum. I feel so much guilt saying no all the time to things we use to do on a regular basis. I know my older son's are coping ok they are 12 and 18 so didn't really need a push on the swings anymore lol. But it is breaking my heart not being able to play with my youngest who is 5. I'm trying to make shopping fun by letting him control my scooter and picking things for us to eat but I find the looks off people difficult to handle. I want to have a big board in front of me saying "No I did not chose to be a parent whilst disabled I became disabled years after having my sons " so I try to avoid going out. I know I am very lucky to have access to a mobility scooter ( it was my late father in laws) but I struggle with the vulnerability I feel when using it as I have PTSD from traumas in my past. I'm hoping the soon approaching warmer weather will help me feel emotionally up to doing more on the scooter with my sons.

mossycow

Hi @reenie,

Absolutely a great place to come. I've had lots of support here whether it's been a place to unload or practical ways of managing stuff.

My first reaction to your post was one of empathy as it sounds so familiar. But mainly that you are so brand new in this new life, post 30th June 2017. I say that in hope that it brings comfort because you have so much hope and chances to rebuild and while new life. It's not one you've chosen.... And you will grieve your old life... But I think the most important thing is that life is not over... Just different

My date is April 2013. after years of having less disability in pain and weakness with my arms... It progressed to my back and bow I can stand for about 20 seconds (which I'm so damn grateful for) but otherwise I use wheelchair and camping stools into he house.

So, after about 5 years, I still feel like I'm learning how to live like this but I mean that positively as I keep finding new stuff to full those awful, empty gaps where once my career and active life one lived.... I've gradually found ways to spend my time productively, happily and... Some days.... It almost feels like this was meant to be which 4 years ago there's no way I'd ever have felt like that.

Of course the biggest job and role you have (I'd bet!) is being Mum. Don't know what you think but I've found that what they need changes from one month to the next... But something that being disabled has taught me (sorry that sounds so cheesey...) is that the number 1 thing needed of me above absolutely everything else is simply just to be there. Just be there. Because yeah, you might never play football (for example) again but you can watch your boys, cheer them, let them talk with you for hours about what they did and what you used to do, help them plan their next etc etc. My daughter is obsessed with horses. The fact that I will ever ride with her, she doesn't really care. But what is important is that I sacrifice every other Friday to rest so I can walk the 30 seconds to sit and watch her have a lesson. She doesn't ride as much as her friends as I'm not working, she doesn't have the top gear, she'll never have a horse at our house etc. . But I can call to arrange her lessons I can plough through ebay looking for riding boots etc and! She knows! That her riding that every other Friday is SO important to our little family that I am there. And that is more important than me being physically able to do it if that makes sense. It's taken me several years to realise that I think.

It has got much easier as she gets older. I think our relationship with younger kids is more physical, but they are also so able to adapt. Emily was about 5 when I became disabled.... I used to take her to gym swimming, we'd all cycle, walked etc.. .she'd come into my work and was part of that environment too.. Ha! She hardly remembers any of that and once u felt sad about that and then my mum asked me what I remembered about being 5...and I realised that's how it's supposed to be.

We have new memories now... Like how Mummy popped to London to talk to people about being disabled.. Which I never dreamed of, of how Mum whizzes along in wheelchair while she cycles with dad, she remembers big smiles on our faces watching her Christmas show or how we got her to her violin exam even through the gravel, the steps, the slopes (we laughed our heads off.. It was like that Bear Hunt poem..) anyway she knows that we got her there and even though we do things differently we have a fantastic family life and there's no reason you won't either. But it does take time to work things out.

May I make some suggestions? You've prob thought of some of these... Some you might not like... But as info seems to take ages to arrive I wanted to pop some here just in case.

*. Don't be scared to do things different and don't be scared/embarrassed to tell people your situation. E. G. Say dropping kids off at party... I had one time (blush) where she didn't go cos I was too embarrassed to ask them to come out and meet her. I'm braver now and it nearly always pays off. Like school bow know that after trips I can't come in and get her... No probs. Etc

*. The first time you do something is harder... But then it's easier!

* have you had a look at what is available for young carers near you? I think it's over 5 years but they are all different. If you Google 'young carers'.. Then where you live and I'd encourage you to give them a call. I out this off for so long and for so many reasons.. . But... We benefit greatly from our young carers support. Everyone needs different levels of support and they will tailor it round you. For us, there were things Emily was missing out on and they helped fill that gap. E. G. They have a social and super fun trip every school holiday so however bad things are we know that time is her protected super fun time! They form relationships through these fun times... So if Emily needs more support she knows them well and they're like a safety net. Emotional support is big as sometimes I'm finding life hard and she support me. Or say if I've had a medical emergency or another challenge. It's just good to have support of family and friends but also outside agencies in place... Makes me feel better to know that too.

Do have a look at Scope support stuff

https://www.scope.org.uk/support

Have a look at the 'new to disability' section to make sure you've got as much as possible in place. Even little things like having a radar key for toilets. . Can help as well as bigger things like e.g. Wheelchair services, benefits, blue badge, carers info . . There IS support out there... .but it's not forthcoming coning so do look out for any help you can.

I think when you have such limited time and energy it is tempting to spend it all on those you love but do take time for you. (ha! I'm just remembering all the people who have said that to me. .. They were right I have found!)

So you can't run. . But you CAN set physical goals for yourself and train towards them.... I trained for months to be able to wheelchair myself from the car to the leisure centre. . It was a tiny tiny distance.. But HUGE to me! I got a hit further each time.. .and when I could take my daughter swimming by myself that first time... I put on Facebook that I had run my marathon and my friends understood.

So you can't manage a whole allotment. .. But you could as a family have a tray of pots with cress, herbs, flowers that you and your boys can enjoy seeing grow.

When I became disabled. .. After a year. . I had a little dream come true and have an aquarium. . We now have 5 Oooops. . . I'm a keen gardener. . It's just how my gardening is down in tropical fish tanks heehee

Something that makes a massive difference to me is my electric power chair. I've had it 15 months and it changed my life. I got it through motobility through top rate of PIP as there's no way we could afford it. It is MINT! so I don't cycle.. .But I can be with my family whizzing through the park while they cycle.... I have a friend who had a stroke and this is how she walks her dogs now. You could argue I'm just sat down and not active... But say yesterday, after being poorly for two weeks. . I had a whole sunny day. .. I whizzed through park seeing flowers and sun and grass and sky.. .. Got jobs done at shops saw people I know,.. . Twas awesome. Similar when husband is pushing me in wheelchair.. .It is possible to have an active, busy full life. ... Even though our bodies have changed how we do things.

Do go to gp and get help. I've had a few bouts of being on antidepressants and they are a good way of helping you learn how to cope so that you will come off antidepressants and have other ways to manage. It's a good thing to do and another tool in your kit. As your tool kit gets bigger things get better too.

Sorry for long post.

mossycow

Gosh... Sorry.... That was the longest post I've ever posted...

Pippa_Alumni

Great advice @mossycow, thank you!

JennysDad

A longish post, certainly, @mossycow, but worth every moment of reading.

reenie

Thank you for the post. I really appreciate it. Parts made me emotional but in a good way. For the first 6 months the specialist thought it was my brain and the neurologist had me believing I would be walking properly not shuffling in about a year. So I focused on getting better. But thankfully the brain mri was clear. The spine specialist happily told me in january it's for life or until I'm old enough for the risks of surgery. Whatever that is meant to mean. I'm assuming it's a "we don't mind paralyzing you in your 50's but not in your 30's" . His instructions were to stay within the range of movements that don't cause pain and live life carefully! Obviously I don't want to be permantley paralysed but living the next 15 years not knowing if today my spine will give out for good this time ( I've experienced temporarily being paralysed in my left lower side that lasted 2 weeks) just seems pointless. I would rather take the risks and have a chance at being a mum again than wait until my kids are grown and don't need me before they operate. My sons and husband worry every day that they will see me collapse again and again and again until I can't physically get back up.
Sorry emotional off load. Feel very frustrated with the NHS right now. Hardly any communication and long waiting lists irritates me.
I will definitely look up what is available for young carers in my area. My 12 yr old is very caring and does a lot for me. So he deserved some recognition.

chellgibb76

Hi all I am in a very similar situation I am 42 with 3 kids oldest 11 youngest 4 I had a stroke last year never received any help after it lost feeling in my right side still now and again comes and goes but I struggle with kids also I hate saying no to them but I just cant