Gutted isnt the word


#1
I hope you dont mind me posting on here about this, but just need to share. Had contact with our adoption team today and I just feel so bereft. We were placed with a baby girl the week that I went into hospital, back in October, the week of my 40 birthday. It is strange because I had been slowing down to a while but I drove myself to a and e when the stiffness became such that I couldn't walk properly or lift my arms without huge effort. I am worried out of my mind at the moment as can barely take care of my four year old and I am so ill and week. My neuro is not happy with my right side and reduced arm swing. I just feel bereft. That I have lost so much in a short space of time. My symptoms seemed to progress suddenly over a week after the flu jab. Although I was really slowing down before this and exhausted so hard to tell if acute onset or slow. I just feel so uncertain of my future right now. I know I have to think positively if I am diagnosed. Scared of worse diseases too. My mind is running all over the place. It has taken nine months already. How much longer is the torture of diagnosis to continue? I am mourning the parent and wife that I was, the child that I have lost and my ability to socialise, drive and have a normal life. I enjoy reading some of the posts on here because in can see that I am not alone. I am a christian and believe that God works all things together for those who are called according to his purpose. Right now I am in the pit!!! =(

#2

Hello, minxish --

Your posts always touch me.  Your situation is indeed severe and good cause for mourning all you have lost.  At the same time, I sense your hopefulness underneath.  You believe that God will not give you more than you can bear and that there will be a better time somewhere ahead.  It's a bit like having an elephant standing in front of you, though, while everyone encourages you to "look ahead"!  You just can't see beyond the pain of the moment.

I have nothing to offer other than my sympathy and the sincere wish that you will find a way toward calmness and peace of mind.  Best regards,

J


#3
Thanks J. I am glad to hear that Parkinsons has not been the end of an active life for you and that and your positive attitude makes me hopeful. You are amazing as you have lost your husband but you still manage to be supportive to others. Hoping that the elephant and I might even get used to each other and then with God's help, I might feel like i have a future again.

#4

I'm even hoping your elephant will trot off to the elephant graveyard some day!

J


#5
I am still hoping it is going to disappear. Be chronic fatigue and then I will get better. I really miss my old self. So does my husband. I saw an immunologist and he said it didn't sound like it and seems more nwurologhcal. Would I be bed bound, room bound with parkinsons though? Driving me crazy the not knowing. Then I worry it is terminal. My mind just runs riot. Courage...courage. X

#6

Parkinsons is not terminal, you die with it, not FROM it, despite what you read in the press about someone who has died from it! It's nonsense.

OH was diagnosed  16 years ago, aged 47, and still not bed bound, not wheelchair bound, has good and bad days. Good day, walks to town and does jobs around the house, bad days, immobile at various times  during the day when meds wear off or they have been taken late.

 A  recent setback with a dislocated shoulder, but, after having the reablement team  of carers in for the last 8 weeks, pretty much back to where they were before the  shoulder problem. Hopefully a week today we are off on a cruise.

It's  a case of getting the meds right, and on time. OH takes meds every two and a half hours, yes it's a pain, especially when out an about, but worth it to be as OK as you can.


#7

Benji is right.  If it is Parkinson's disease that you have, finding the right combination of medications (which may take a long time) will work wonders.  When I first began medication, my symptoms disappeared completely!  Of course, they came back over the years, but by taking more medications and a heavier dose of the one I started with, I still keep the symptoms under control.

I understand the frustration and worry of not knowing, though.  Your mind leaps to the wildest and worst possibilities.  You can only try to stay calm until you get a real diagnosis.

Best wishes,    J