This brain fatigue problem is driving me crazy, so I made a decision last night that I think it’s time to go back and see if I can get some answers from the professionals.
There aren’t any specialists in England who deal with adults with Cerebral Palsy, but having spent some of my time trying to piece more of my symptoms together, I want to know if what I think I am dealing with can be confirmed. When I first went to see my Neurologist, we had nothing to work on.
I came out eventually with a diagnosis and although he read my scan notes, it was a little difficult trying to piece everything together. I didn’t understand then some of the problems I had, particularly with sleeping. I always maintain that if we know what we’re dealing with, it somehow makes our battles with symptoms, far easier.
I also believe that when people know what we deal with, they tend to behave differently towards us. They become more accepting and sympathetic to what we deal with. It saddens and annoys me that I have the most common childhood problem and there are no answers yet on what I deal with.
I understand your frustrations. I hope you do find the answers you need to bring closure.
I agree with you on the fact that we are able to deal with our illnesses if we know what we're dealing with... and others do accept us more if we can tell them whats wrong.
I'm so sorry you're having such a hard time. I'm here for you always.
Thanks Lisa.
Sounds like you need some answers on how to deal with your CP, now that you know that's what your problem is. I'm surprised there aren't any Specialists who deal with adult CP in England.
Hopefully you can find more answers in the near future, so you'll be able to have some closure, like you were talking about!
Thanks Randy. I hope to have some form of closure and if I don't get closure, I will have closure on non-closure!
I think I do okay considering what I deal with, but it will help to know I am on the right tracks in what I deal with.
I know it certainly helped me a lot once I gained knowledge of my disorder. I think once we have a complete understanding of what's going on, we can anticipate certain limitations and lessen frustrations. I hope you feel better soon Ilana.
You're absolutely right. Thank you.
I'm very surprised there aren't CP specialists in England. I see one a few times a year. I agree that it helps to know what you're dealing with, so that you can cope with things much better.
The tough thing about CP is there isn't much information about it that takes age into consideration. Most of the studies are children and there's very limited studies that are of adults, relating to CP.
You're absolutely right Leanna, but my thought is that if I cannot find any more answers, I can bring closure on non-closure, in other words bring closure on never having answers on what I know I deal with.
I feel I have to give it another go.
I hate to say it, but when I got a psych diagnosis (bipolar disorder), people did treat me differently, but in a bad way.
I also have Fibromyalgia and when I have a flare-up and need help with pain medication, the doctors look at my records and when they see that I have the psych diagnosis, they think it's all in my head... The only people that help me are my therapist and psychiatrist.
They're the only ones that truly understand. But even that's limited because I don't exactly fit into that Bipolar category. Over that last 4 years I would say, I've been on between 20 to 30 different medications, without much success.
I've also undergone several rounds of ECT treatments (electro-convulsive therapy). If you're reading this, NEVER go through with ECT. It's the worst possible thing I've ever done to try and treat my illness... I know this site is about CP (my son has it), but I'm just trying to comment on my own life experiences as well. I hope that's okay.
Heather it's really no problem. I am pleased you have written about what you deal with. We all have problems, it's nice that we can empathise and support one another. Thanks for posting.