Why is cp so hard to deal with?

[l1cp0]

[mollymoobarnes]

In terms of the progression of symptoms, management of symptoms or emotionally? Or all of the above?!

Maria x

[l1cp0 in reply to mollymoobarnes]

all of the above i guess

[rcwallace21 Administrator]

It can be difficult because you can be doing alright one week and the the next you can be very tight and uncomfortable. It is so variable. During my late teens I had to ave surgery on my hips and muscles which I wasn't expecting. This week I have a cold so my cp symptoms flare up. Howeve I focus on what I can do and try to get on the best I can . Hope this helps.

[Dave30379]

Because most people in society today don't understand and won't learn to understand so they become prejudice against a lot of "us".. We are "normal" just aseveryone else except they choose to treat us differently.

If your talking physically, can be hard too, mine has got worse due to arthritis popping up in places I don't need it to be. Just have to grin and bare it.. Here for life, who you and I are.

f people don't like it, stuff them, there are a rare bunch that will trat you as one of their own..

Take care

[l1cp0 in reply to Dave30379]

thank you everyone you help me feel like a real person

[mollymoobarnes in reply to l1cp0]

Not just any-old real person but a courageous, brave, strong-willed person who deals with a level of adversity that most people don't have to deal with. My little boy Tom is 3 and has quad CP - he's dealing with difficulties I never wanted to see him face and he's doing it with a smile on his face and a strength that neither of my girls have had to develop.

It makes me feel sad to hear that only a rare bunch of people will treat you as one of their own - are people really that shallow that they can't get past a disability? I'm hoping so much that Tom makes friends and gets invited to parties at school - I guess I'm being overly optimistic but I can't imagine anyone not wanting to get to know him - he's bloody fantastic!

Tom rides the same rollercoaster as the rest of you in terms of his tone and discomfort being up and down - lately he's really suffered due to huge growth spurts and his muscles becoming REALLY REALLY tight. He's lost a lot of his independent movement because of it (he was rolling and comando crawling before) and has had to start Baclofen. He's also got to have both hamstrings and one hip adductor muscle released at the Evelina childrens Hospital in September because his hip is being pulled out from it's socket by the high tone. It's just horrible but I am really hoping that once his leg tone has been reduced by surgery it might make his arms less tight too as his legs won't have to work so hard.

Anyway, I wish I could make it better for all of you - I wish idiots didn't see the disability before the person and I wish you didn't all face being treated unequally and unfairly. There is an amazing chap called Toby Hewson who has CP and who is the CEO of a company called 'Just Different'. His work involves going into schools from infant age upwards, to talk to kids about disability and difference. He lets kids try communicators, wheelchairs, ask the questions they want to ask and really come to understand that people with disabilities are just people and that they can do all the things that they can do, just in a different way. I hope that his work will inform a new generation - a generation who've experienced the paralympics too, and just maybe, see disability in a different light. Here's hoping.

Maria xxx

[l1cp0 in reply to mollymoobarnes]

That makes me feel so happy. I hope that your son doesn't have the hard time that I did in middle school. Yeah middle school was really rough for me.

[niceboots Volunteer]

Life in general is tough, life with cp is tougher. I see it as a mix of good days and bad, highs and lows. The highs make you feel ontop of the world and make you and those close to you proud, and the lows sometimes make you hit rock bottom.

What I would say to you is focus on the good stuff, all that you've achieved big or small, focus on the things and surround yourself with the people that make you feel good, and ignore the rest.

I know how hard it can be, I have hit rock bottom and got fustrated that with everything I have wanted to do my body has faught me all the way. But what got me through was thinking about all I've done despite cp and the people who take the cp as part of me and love me for who I am.

People that just see the cp aren't worth bothering with.

[l1cp0 in reply to niceboots]

Those people are just really hard to ignore.

[ncmw12 in reply to niceboots]

Cheers nice boots, that's cool

[l1cp0 in reply to niceboots]

Good things are sometimes hard to focus on but yes that really helps.