It’s been a little while since my last post and there has been much progress!
I now have my new wheelchair! Which is so amazing! I am now waiting for a Smart Drive, and although this may take some time, I am enjoying my new-found freedom!
My chair is extremely lightweight which means I can get it in and out of the car by myself! Whoo, whoo!!
A step at a time
I am taking every day as it comes and over the last few weeks have become more accepting of my new life as it is now, which is huge in itself. This has meant that I can now see my mobility aids as freedom for myself. Over this last year, I have learnt a great deal. I have spent time putting love and care into long lasting friendships with people who are dear to me, also discovering new ones on platforms such as Instagram! (most surprising!) there are so many battling chronic illnesses! I am so pleased that I chose to access information, and reach out to people with similar difficulties. I think if I hadn’t I may be in a very different place right now.
Since seeking out information and becoming part of the disabled community, I have discovered that I harbour a considerable amount of internalised ableism, and by being aware and following awesome disability advocates, I am gaining insight into what it means to be disabled in 2022. I can tell you that although there has been change over the years, it’s no where near enough!
Never give up the fight
Being a mama bear, I have had to fight so damn hard to get support for both of my children over the years. My son and my daughter have Educational Healthcare Plans, (EHCP) to help support them through school and life outside of school until they are 25 years old. I am incredibly lucky to have such amazing friends in my life, who helped me through that period and it absolutely was a joint effort in every sense. However, I think of those parents who don’t have that support, or inclination to even know where to start. Access to services isn’t as straightforward and waiting lists are vast. I will put some links to places that you can find support to help with form filling with regards to EHCP’s for your child on the resources page.
Over the last few months I’ve had to fill out ridiculously long forms to get support for myself, and trying to navigate my way through that has been challenging! and again, I think of others in a similar situation with little, or no support. Those who are on their own and don’t have a clue where to start with PIP forms, or accessing other forms of support for themselves. Like I’ve said before, Its a long old process which is exhausting and utterly frustrating! I will put links to organisations and websites that may help support you with getting support for yourself on the resources page.
Honestly, I’m fine
When it comes to fighting for myself, or having what I need. I’ve always been like, “oh well, nevermind that will do, I’ll be fine. I am fine, everything is okay!” Therefore, the last year for me has been a very interesting one. A combination of I’m fine and that’s really hard, but I’ll be okay, to I’m not okay at all what the hell!! I’m drowning over here, lifeboat please!! Brave face, brave face 😬
It’s okay to not be okay
I am meeting and talking to people who are not afraid to say, I’m having a really shitty day, and I feel like crap!! It’s refreshing and I feel more at ease saying, god me too! I feel rubbish! It’s absolutely okay to not be okay, to have an awful day and bloody well say it! I know there are people out there like me that have negative thoughts i.e think that if I say I’m not okay, or talk about how rubbish I feel then I’m not an attractive friend to be around, or the cool mum, or the spontaneous wife. I’ve had all of this going through my head over the last year, it’s entirely unhelpful and completely untrue. If you are feeling this way, find something postive and achievable to do in your day. I find gardening therapeutic. Self care is so important, try and make time for yourself.
I have found solace in reading other inspirational stories. Fearne Cottons ‘Happy Place’ podcast has been an amazing resource for me. Every interview is insightful in some way and is always packed with tips, or other resources to help you on your way. I recently listened to her interview Sophie Morgan, whose book ‘Driving Forwards’ (an account of her life since her car accident when she was just eighteen years old) has recently been published. Immediately afterwards I bought the book and when it arrived, I devoured it in next to no time. It is an incredibly inspiring story, with a very clear message and I heard it loud and clear. It’s an ongoing beat of my heart through life – never give up! Just keep going! (I’m sure there’s a song in there somewhere).
I have exciting news that I will be sharing in my next post, so hold on to your hats folks!
I hope everyone is doing okay, sending much love as always to you all! 💗