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

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.