How low can you go?


#1
I'm trying to gauge whether I'm being overly dramatic here. I was dx in 2008 but recently I've hit a 'wall' - I feel completely overwhelmed by the reality of PD. how did you cope? Am I being OTT? My partner is very much a 'get on with it' type and tbh so am(was) I . Until this. I've changed my working arrangements, im trying to not overdo things but it feels like its all crashing down on me. How did you communicate this to your family without sounding like a victim? I need help guys. Thanks

#2
Quarkee, you’re being neither overly dramatic nor OTT. We all allow ourselves the luxury of a ‘wallow’ now and again and, personally, I think that’s a healthy thing. But don’t let that be an excuse to withdraw from the world; get out there and live the life you have been given.

Last week, I was visited by a dear friend who has been given 3 months to live after being diagnosed with an inoperable brain tumour. We laughed and we cried about old times. I have another close friend who is in a nursing home in the late stages of MS. I can’t laugh or cry with her because she has no memory.

Today I took my son's (large) dog for a walk and, despite being a strong candidate for a job with the Ministry of Silly Walks, I found myself treading on the heels of people much younger than me.

I think what I am trying to say is this: "It’s all relative". Easy to say, I know. But we all owe it to ourselves to keep things in perspective.

#3
I feel that way too sometimes. Dx for me took place over a 2 year period from jan '05 to jan '07. Only in late '07 did i start meds and it was into 2009 before I told more than my very closest family. Despite some roughish times things have been good for me.
That said i really recognise the way you feel. If I let it take over thoughts of PD could destroy all my dreams and ambitions. I try to focus on ability, on life, laughter and looking forward.
Lily's advice is good. Take each day as it comes, try to be yourself, but be gentle with yourself too.
I find some inspiration in beautiful writing. It might not be for you - but have a look at 'the invitation' by 'oriah mountain dreamer'

Elegant Fowl

#4
Hi quarkee

Try to enjoy life no matter what life throws at you.
My 12 year old daughter was born with cerebral palsy she's had pain from day one.she's had operations on her throat,ears and legs(which damaged her nerves.so even more pain so much so she wanted to kill herself)today same pain but getting used to it.she also turned diabetic so she's on eight injections a day.and yes she's still smiling.
I'm being diagnosed later this month and I've got all the symptoms but I will live life to the full.I look after my kids till I drop.

I think of what pain she's in and think if she can do it so can I.
All the best

#5
hi qaurkee, i have had a blip myself today let the pd get to me but sometimes i think that its good for you to let it out sometimes you would,nt be human other wise, i was feeling sorry for myself and frustrated when my meds did,nt kick in which happens a lot and i could not do the things that i wanted to had to wait for the meds to work it took 2hrs, most of the time i try to grin and bear it but you can not keep a stiff upper all the time, so please don,t get to upset about how you feel right now its just parr for the course. sue.

#6
Hi quarkee
Don;t think you ever come to terms with having PD but in time you can learn to adapt because it is not going to go away, regrettably.
We all have low times and it can be so easy to let these feelings take over.Try and stay Focused on the good things in you life. When you feel down and sad the stress will make the PD worse and that's not good!!!
The forum is very helpful and lots of pwp to chat with, who can give good advice .

take care PB x

#7
the good thing about this forum is that we all understand how low you can get. This is useful since we do not expect what fellow sufferers cannot deliver. Keeping your sense of humour is inevitably impossible. You need to stop beating yourself up and allow yourself the luxury of having a bad day/bad week. It was allowing myself to actually giving and have a low profile day that was my saving grace. Fighting it, trying to be Supermum, super wife, super sister, super daughter .. ... was completely exhausting and as a friend pointed out more than most fit people can cope with. Try repeating these three words, they work for me.

CALM, PEACE, SERENITY.

Above all keep talking. Thinking of you.

#8
Hi there,

I was diagnosed about the same time a you and fortunately I was still working and had lots of support,but this year I was redundant and knew I was ready for retirement, I had been struggling so hard to cope with work and everything else.

A few weeks ago I was in a terrible state crying all the time and and cursing this disease, I am normally a very outgoing person but what I love doing most when I go out is dancing and I can,t do that any more as my body seizes up and I am out of step,fortunately my friend told me not to be too hard on myself and give in to some rest and relaxation, we can't make our loved ones realise what it's like and at one point I thought my husband and I were going to split up.

Allow yourself some indulgence, I went for a massage to someone who knew about PD and manipulated the points that would benefit me, I felt so good after it.

Take time to look after yourself and take each day as it comes, keep smiling and thank God every day for our loving families.

Take care and God bless.