Survivor Survey – “Normal?”

Q: Have you found “normal”?

Many survivors report that they feel different to pre-SCA and struggle to get back to their “normal”, some find a new “normal” and adjust to that, what about you?
Responses with name, age at SCA and time since

 

I feel pretty normal, but until I get genetic screening results, things could always change as I may or may not get a diagnosis.

Clare,  31, Almost 5 months.

I am still not back to ‘normal’

Carly,  34, 1 month

It as took me nearly 7 years to get back to some semblance of normal I have to take things at a slower pace and realise my limitations.

Lisa,  40, 7 years

Lost my personality

Anon,  70, 10 months

I was lucky got back to normal very quick.

Sue,  51, 8 months

Have learnt to adapt with life 90% of the time

Lee,  37, 5 1/2 years

Definitely us a new normal but you have to think you are alive and make the most of it

Anon,  56, 15 months

Not yet accepted the ‘new’ as normal.

Mark,  56, 14 months

Don’t know yet. Too early to tell.

Joe,  52, 4 weeks

It took a good 6 months and a further year for it not to be at the forefront of my mind. Now it’s just something that happened

Natasha,  25, 4.5 years

No I don’t think there will ever be a ‘normal’

Ben,  32, 1 year 2 months

We now have a new normal and it took a while to get my head around that

Michelle,  50, 1 year

Will never be the same

Michelle,  43, 5 years

Certainly a ‘new’ normal. I will never be the person before, and to be honest, not sure I want to be. The ‘before’ me was a worrier, a little OCD, world on their sholuder’s type, had a stressful job, and somewhat annoying circle of friends. Since, the ‘new’ me, is so much more relaxed, I rarely plan things and just go with the flow, I work for myself and I purposely distance myself from negative people/friends. I keep calm as possible in challenging situations and look at the small things with different eyes, sunrise, sunset, birds singing, smell of rain, laughter….soppy I know, but these end up being so important and get missed so easily. I think the only possible negative things (if it is negative) is I have zero tolerance for other people’s minor ailments. I have never been a sick note kind of person, but now if I hear someone complain seriously about a cold or a headache which they feel they should attend A&E (drama queens) I can be very annoyed and feel disrespected. I guess it may be my own problem, not theirs.

Judy,  39, 3 years

New normal

Tracy,  50, 3 years

I have a new normal

Graeme,  36, 10 years

Feel different to before but in a positive way, i am happy with life and as i am

Julie,  31, 8 years

i feel normal

Lynne,  47, 21 months

Apart from walking I am fine

Maureen,  68, 7 years

Somedays I feel normal. Others I dont.

Lisa,  35, 4 months

New normal

Stewart,  53, 3 years

I did notice differences over a monthly period as the were so gradual. I would be able to say I couldn’t do this a month ago. I havent done that in some time so I guess the changes have stopped around at 12 months. But I do notice that its not getting better now but things seem to be getting worse. Eg my arthritis pains are back, I have my first cold since SCA

Robyn,  57, 18 months

I think I’ve found a new normal

Dawn,  48, 3 years

No

Pat,  51, 15 months

I can’t reverse what has happened. I can, and have, accepted where I am now and who I am now.

Andy,  51, 5 years

I actually found it easy to adjust. It was off to I’ve an ICD bit I didn’t struggle wth it. I was mpre forcused on recovery. You have to think of it as your new normal.

Amy,  17, 14 years

i felt different but in a good way. I’ve always looked as what happened to me as a positive and it’s made me a much better person.

Imogen,  21, 2 years

No.

Anon,  36, 11 years

Normal? Pink Floyd summed it up ‘There’s someone in my head and its not me’. The old me is gone.

Brenden,  56, 4 years

No

Kym,  40, 3 years

My new normal is no different to my old normal. I was able to take it all in my stride with the support of my family and friends.

Mark,  46, 23 years

Life will never be normal again

Joanne,  48, 23 months