In a box


#1
Prior to posting I read Stevieg's post about crying and depression, chin up my friend, i know exactly how you feel,in fact i was pleased to hear about how you felt because I now know its not just me who feels like that and i am not ashamed to say I cry. I don't really know if people on here want to read about bad stuff, but since joining sharing feelings helps because it is a place to let go and give the family peace. I am now on ADs, sleeping tabs and PD meds. Very depressed and no go feels like i am in a dark box, now got to see the CMHT (what next?). Daily life is hard and it is difficult to talk about it, sometimes you feel medics and others you discuss the PD problems with switch off or maybe thats just me! I can't seem to get out and about needless to say I prefer to stay in now.I think the main reason is when out I get very tiered and embarrassed due to the strange walk and shake especially at my age. Yesterday I saw my GP really just for a chat, she is a wonderful caring and understanding professional, but sitting in the waiting room was a real nightmare. During the consultation I stated that there are an awful lot of people worse off, and I am alive, she interrupted me and made it clear that the disease is bad and not knowing the future is the hardest part. So I know i have to start accepting, i am sure that day will come, but right now at 44 the PD is winning,i am not the person i was and that hurts. I know you will read and say be positive but truly i have tried, i am not sure i can do it anymore. Rome wasn't built in a day so there must be hope, isn't there?!

#2
Russ
There are loads of people here who know how you feel. You are always welcome to pop in here to share, rant, support or cry.

EF

#3
if you can't let it all out here where can you? and if you need to do it again and again thats fine too.
there is hope. whether its justified or not time will tell. but great advances are being made in the understanding of this disease and i honestly believe that if not exactly a cure, then at least treatments that allow us to lead a reasonable life for the rest of our days, are not that far off. that is my hope. whether it is made of straw i will find out in time.
sitting here with one leg on top of the desk to try and drain of the oedema, i know it is difficult to not be self-conscious. but after having 13 years of walking around shops etc with a child with downs syndrome i have become immune to other people's glances or stares. other people dont matter but hiding inside the house is very bad for you. **** other people! ignore them and they disappear.
you are right you are not the person you were. none of us are.
its like losing a loved one only that person is yourself. but people get over the worst tragedies or at least cope. I believe it generally takes 2 years. but if you know that acceptance will happen then it is easier to live with the grief.
i hope you dont mind me going on but it is as much for myself as anything.
lastly acceptance doesnt mean giving in, it means begining the fight back - learning about the enemy, resisting every step backwards, keeping as fit and healthy as possible so that when the marines arrive we are in a fit state to accept their help.
i dont know about you but i feel much better and the oedema has gone down a bit. now if i can just get my leg off the

#4
Hi Russ
You could have been describing me and my depression. My GP has become used to me dissolving into tears in the surgery - as soon as he starts being supportive the flood gates open. I've been dx since 2004 - now aged 63 - and have only just started to accept that I will never improve. On AD's and Amytriptilene for sleep and mood improvers and Sinemet 62.5 x11 per day - spaced out as I need them. I also prefer to stay at home - apathy is my biggest foe. This forum has helped my sanity as I can't express my feelings to my other half - he's brilliant but I don;t want to turn him off me!!!!

All I can say is try to wake up each day with a smile - its hard but do-able.
Thinking of you

#5
HiRuss just read your post and i can honestly say I know how you are feeling right now. Like you I am 43yrs old and was just diagnosed 6 months ago. I think the reality has just hit me and I am not coping very well. I have now been off my work for almost 2mths as I cant function properly .The doc has now put me on A/Ds which i didnt want to take but starting to feel a wee bit better at least I am getting a sleep now. Like you also I was at a family get together on Friday night and by the time I got home legs were wobbling and tremour on my right hand had gone into overdrive. So much so that my brother-in-law had to help me upstairs to my bedroom.The strange thing was when we got there he apologised to me saying that he didnt realise how difficult it has been for me.....but hey ho thats life and unfortunately i need to learn to live with this horrid illness to the best I can. I wish you well my friend.

Alan:rolling_eyes:

#6
Hi russ

We can all relate to you and how emotions do take over. I still have days when I get so upset with myself. Frustration, anger and dispair all come to mind. Only wish I had some words of wisdom to give you.

Many good people here on the forum with excellent advice, your not alone.

PB x

#7
Hello Russ, I am sure that many people with PD can relate to your posting, I certainly can. Ive been dx for 12 years now and although things are fairly stable now I still get peed off with this condition. I too tend to stay at home more, even my own daughters who are grown and independent now until recently had no idea just how much my condition had progressed. My eldest has moved back to live with us on a temporary basis and my youngest called in recently early one morning quite unexpected and saw me at my worse, they both appear to have had a major wake up call. They have told me that because I always smile and say 'not too bad' when asked how I am, they had no idea just how bad things are.

During my apo pen assessment I burst out crying a few time, mainly because I am sick of being in pain. I sometimes wonder if we shouldn't tell the world when we feel s..t instead of grinning and bearing it.

Glenchass

#8
:grin:

Thanks to all,you have cheered me up. For those feeling like me chin up and keep smiling!!!

For the first time I had to ask for help whilst at the supermarket, at first i was embarrassed then emotional, but now I feel no shame in having toask for help.

Keep well all,and best wishes

Russ