Yesterday my mother recieved the Midwest Carer of the Year Award. It was overwhelming and we are all very proud. I got to read the nomination I wrote for my mams entry.
I couldn’t remember what I wrote as it was all the stuff that she does everyday and I just typed as if I was talking. I wrote about how my illness effects both of us and how I understand and see how hard it is to be my mother and a carer also.
This is a time in her life my mam should be out doing exactly what she wants as her children are raised but she can’t plan anything as she spends everyday here with me.
Nothing can be ever planned ahead. Two holidays she took and my brother came all the way home from Spain to stay with me.
She still spent her holiday on the phone worrying about me 😆
Traveling to London every three months for now soon to be three years is exhausting as well as the constant hospital appointments I have here.She is the only one with me at every one.
When my illness started to progress at first, I was spending so long in hospital my mam had not only be with me there but look after my son too while running to get whatever I needed that day.
She has answered calls in the night to come to hospital after I’ve taken a bad turn when she has been there all day and has sat there in an emotional state while I’ve been unresponsive.
You can see someone’s exhaustion on their face I can see when my mam is exhausted , but my mam always remains strong for me no matter what, even when she is exhausted or ill herself.
Even on nights where I’ve been so ill I’m just broken and crying saying I can’t do it anymore, she tells me I can and all the reasons I can and sits with me through the worst times.
I’m a mother I can’t imagine staying strong seeing my child in so much pain.
On the day I was brought into resus last year for two hours, I’m sure my mother was ready for resuscitation herself while she had to wait outside, but she got her miracle she is always praying for.
We remain strong and positive together, and she always reminds me what I have to keep going for.
As a carer that’s a fantastic trait to have and as a mother most importantly.
This battle is forever and is so tiring, self funding and fundraising for treatment abroad not knowing when I’m going to go down the route of surgery abroad for the instability in my neck and chiari. I’ve a constant fear over me.
Its a lot for me to face and my mam too.
I spend weeks and months at a time house bound and would go so long spending most of my days with just my mam.Mentally that’s very hard not interacting with the real world, I get angry about my illness and others lack of understanding to not arrange something I can do and isolation is a problem.
I’ve a wonderful supportive boyfriend now, who my mother also likes (very important) so she gets a bit of time off when we are together now but she’s also adopted another child to care for too 😉😂
No one sees what goes on behind closed doors. I’m a very positive person I personally only like to show my positivity as much as i can.
I only share pictures of good days on Facebook I try not to post about how I’m feeling constantly and I don’t do constant updates of doctors and consultants results on here.
This is a personal decision I’ve made for my son who is getting older and has access to computers with the internet.He already googled my name and thought I was famous 😂
I think everyone is so brave for sharing their journeys as they are so helpful.
I share more indepth details of my journey on Instagram and the blog here
It is a very tough with illness in a family the whole dynamic changes.But I’ve gotten my strength from my mam who has remained strong and we share our positivity an hopefulness that gets us through.
I wanted so much more for myself and my mam wanted it for me too. As much as I’m heart broken so is she. No one wanted this life but you have to play the hand you were dealt.
I think my mother does an amazing job at staying positive , being selfless and supportive a fantastic representative as a carer.
We love her very much and couldn’t do it all without her.