FAMILY…..HEY…. WHAT ABOUT ME!!!

So when you are a parent and you become disabled so that you can no longer function as you were it becomes difficult to find a role, a purpose to your whole existence anymore.

Seven years ago after having my last baby i never fully recovered and gradually got worse to the point where i went from being super active, taking spinning classes 4 times a week, kids playgroups, walking everwhere and every holiday I’d take the children camping by myself as my husband had to work.

I worked towards and wanted to be a supermum, have a large family and be like the Waltons on TV saying “goodnight” to each other at the end of a busy day. I wanted a life of adventure with my children.

I left home at 17 (another story) and went to teach sailing. I also used that to work on boats re fitting them over winter in different parts of the country, then sailing around Europe in the season.

I then became an aupair in Denmark near Copenhagen for a year and travelled around Scandinavia whilst there.

I wanted to share this adventurous lifestyle with my kids. We don’t live far from a yacht club and i was so close to being ready to get that little dinghy and start teaching my mini mes ๐Ÿ˜.

I don’t want to go too much into my illness at this stage am happy to answer any questions but it’s basically neurological. It affects my muscles and causes problems with my walking, breathing , head (bet you’ve already guessed that ๐Ÿคฃ).Doctor’s still after 7 years don’t fully understand it but probably because I’m under several different consultants for different parts of the body, in different regions ,the nhs have different computer systems and nobody speaks to each other. Enough about that for now.

All that being said it has been 6 years of apsolute hell ! I have never ever felt so humiliated, useless, unwanted, lost ,fustrated, miserable but most of all heartbroken that i physically or even mentally couldn’t function because the hospital had handed oxycontin out to me to try, they weren’t appropriate for my condition but before i knew it i was on 60mg twice a day.

I was quiet alright . Just sat everyday thinking everyone would be better off with me gone. All i could do was sit in my chair and beat myself up how i was letting my children down. I couldn’t give two hoots about me . I wanted my kids to have a full adventurous life and i was still am holding them back .

We haven’t had any help from anyone. My husband has been mum ,dad , carer , cleaner , cook and still has had to work too! He deserves a medal. It’s hard though because family relationships change. Your children are now helping put your socks on . Your husband becomes your carer ๐Ÿ˜‘

Last year i asked my pain Dr if there was some other sort of medication he could put me on! He told me to quit the oxycontin and and then I could try nablonine a cannabinoid. The best thing I ever did.

So to keep me funtioning ๐Ÿ˜ฒin a fashion i have them a miracle drug for me and botox in my jaw and face muscles and steroid injections in my head a ventilator at night and when exercising and oxygen if my head starts plus a cocktail of other drugs.

Hey I’m funtioning though and it’s better than it was.

I also now have just got an enhanced community support worker who is helping me. At the moment she’s trying to help me get funding for a wheelchair as i live in a place where the roads are terrible and i need something better.

Im managing to get to the gym starting to strengthen my arms.

The point of my blog…..

I’ve been there I’ve felt it, i feel it. I know. It is isolating and i understand. I actually still don’t know my place in that photo but I’m closer to finding out than i was.

In my area there are no support groups for families or children of a parent with a disability. There’s no information access point. Let’s face it nobody teaches you on how to cope with being disabled and it’s not something you plan for. I do not want anyone else to feel the same way i have done for the last 6 years.

https://www.facebook.com/groups/1556840474401957/

If anyone wants to join this Facebook group for support we can help each other ๐Ÿ˜Š

Joanne Quinnell

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