Hi, my name is Amy36!

Amy36

Hi,

I am 36yrs. I don't know very much about cp. I was blue when born and had been deprived of oxygen several times during labour. I was promptly taken from Watford General to Great Ormond Street. My mum was told that I was brain damaged and I would "never dance" (that definitely NEVER came true - I love dancing!). I was in a little incubator for several days.

Any symptoms of cp - as far as I know - did not appear in the crucial 0-6yrs. Although it is possible that my mum was very closed off to any suggestion of otherwise: it was the early 1980s and she probably would not have wanted to hear anything other than me being in perfect health (she went through a lot so I forgive her!). 

I did well in my education but found it hard to focus due to often being very tired at school. I struggled with Maths and I still get really mixed up with Maths and numbers.

Now I have found a lot of problems relating to FATIGUE and anxiety. The anxiety always goes back to a fear of being TIRED. It's like I have tried to push ignore the tiredness as insignificant all my life and I can't do it anymore. I had a "breakdown" in September, this was linked to excessive fatigue and panic. Anyway, I don't want to drone on when people here have severe medical issues linked to their cp, as that doesn't seem fair. So to get to the point: someone has recently suggested that I may have very mild cp. It has sort of felt like a door opening, but I am not sure it is the right door to the right room?

 But it may explain little things I have always just ignored like:

• People often ask if I have a limp or if I have hurt my foot. I don't know what they are talking about but so many people say it.
• In bed I automatically curl up my left hand and arm into my chest. It's cosy, but I don't realize I am doing it! My ex boyfriends used to / and my husband now teases me about it!
• I have had really bad fatigue over the past two years and vigorous exercise or rushing about too much is a no-no for me now, because of it;, but a few times I have lain in bed barely able to move and my arms and legs have random pains in them I cannot explain.
• Really just this constant fatigue. It doesn't matter how much sleep I get. I am always foggy headed, yawning away, struggling to get through the day and by Friday I can be close to total shutdown. Then I spend the entire weekend recovering!

I feel really lucky that the doctors worked so hard for me and my mum when I was born, so I carry around a blessed feeling. I guess the question for me is, do I just carry on with the pacing etc. (for the fatigue) without medical help? Because really, there is nothing a doctor could do for me, I just have to look after myself? Also, is this going to get worse as I age? I suppose without a diagnosis - and I may be totally wrong on everything - you can't begin to make sense of anything.

x

Pippa_Alumni

Hi @Amy36, welcome to the community and thank you for sharing your story with us. It's great to have you here: you might find our cerebral palsy category particularly helpful.