It is patronising and always seems to be said in such a way that you don’t really believe there is anything wrong with me.
I make every effort when I am in company to be as “Normal” as possible. It takes a lot of effort to do so and I can’t keep it up for long. It is draining and I do it for other people not for myself.
Ask how I am. Don’t tell me how I appear.
Hi Hubby
You know this is me too, I act and do what others expect of us and in a room of people, be them my family or friends I find my self the most talented actress, walk , eat and talk like others,
But deep down I am drowning and exhausted I just want to scream I am not well so stop and think how this make me feel. I hate these family and friend get together, so glad the x mas is over, not having to feel lost in a room full of people. But again not looking forwards as no matter what I do there is no good news for me.
Appointment after appointment the not.knowing if I have PD even thow I have all the signs, now they are saying in too I 99% have fibromyalgia, it just doesn’t stop.
I am so sorry if this post is so negative but this is what I want to scream out and tell them all I am here and I have these things wrong with me, I can’t do things sometimes and it’s not me it’s my body what stops me from doing things. I can’t walk as fast as you, I can’t talk as understand as fast as you, I can’t eat as fast as you, it takes me time to understand when people are talking to me, so stop and think how tied I would get after being in a room with you all for less than a hour.
Sorry I have had my time out . I hope you feel better soon, but you are not the only only.
Raz
I agree I am told frequently that I look well and therefore I am not that unwell. My husband tells people on the qt that they should see me in the morning when I can’t get out of bed or in the evening when dyskinesia makes it impossible to relax and watch to. Over Xmas I had wall to wall family and they had a good time - me? Chief food provider, present buyer/giver, entertainments officer and oh yes nurse as one guest arrived with gastric upset. I was exhausted by 2nd January when the last person left. That’s a woman’s lot with Parkinson’s!
Even the people closest to me don’t get it.
It is so frustrating.
Most of all I need time to do things. Yet everyone is rushing me.
Left to go at my own pace I generally get everything done.
Being put under pressure stresses me and i feel really bad.
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Hi hubby
I know what you mean, sometimes they our families forget that we do have PD and we cant move that fast. But you carry on in your time and than slow slowly they will see that you are not ready in the car waiting for them or next to them in a shop. I have told people I can’t move as fast as you, and that I need time, but in that I have added “if I am keeping you or marking you late please just carry on without me” this some times this make and remember I have PD and yes she needs time. You hang in there😊 Raz