I woke this morning tears wet on my cheeks and a sense of defeat surrounding me. My body, not giving me a moments relief from pain, rushes the tears to my eye with every move I make. I'm wondering why and when things got so hard!? I am in mourning, realizing that I have lost a considerable amount of myself, and what is left is limited by the diseases that control my body.
Please don't look at me! Don't ask me what's wrong. The tear flow faster, you pull me into your arms and let me cry, rubbing my back and telling me you Love Me and that everything will be alright! I just cry harder. I can't seem to stop. I keep thinking. "why does he love me, why does he put up with this crazy emotional woman? Oh!, it's just too much to think about, and I am so tired now. I pull away, stealing a look a his handsome face, so full of love. I groan and curl up on the bed. I'm going to rest a while longer. You bring me a pain pill and a glass of water and tell me your off to work. A kiss and an "I Love You Babe" bring on the tears again but I'll hold them back till your gone.
I'm up now, on the computer, still emotional, frustrated and in pain. I don't know what to do really to make myself feel better. I'll just push on, I suppose, like always, doing what I can as I squash the pain, wipe away the tears and find something to distract myself. For the last couple of weeks walking has become more and more difficult. I cannot walk far without stopping for a breather and my new favorite word as the pain screams throughout my body is "FUCK"! "Fuck,fuck,fuck,fuck,fuck",and I really don't care if the word offends anyone, and in the back of my mind I know my independence is on the line! I'm going to cry again!!
I think I'll throw myself a "Pity Party" and I'll cry if I want to. Or curse, maybe throw things. Reminisce over old photographs that I find, or perhaps start my second Sea Turtle for the series. There is still a lot of life left in me it's just learning to accept my new lifestyle that's hard.
I'm crying again, the meds are wearing off and my tremor is increasing and my arm are beginning to move in short rhythmic motion as dyskenesia settles in. What the fuck, here come the tears again. This is all so painful and exhausting. The phone is ringing. It's Robert, just wanting to tell me again how much he Loves Me! His truth hits home and I decide I'll take his love over my pain any day, and I decide that Today is going to be a Good Day after all! I don't know when the day got so long but every hour seems to drag on, and on...
Jupiterjane
Written by
jupiterjane
To view profiles and participate in discussions please or .
I have said a little prayer for you today that you get the strengh to cope with yur horrible lot, hope at least you can get some relief in venting your feelings. The ffff word I think will give you an emotional release and does not in the least offend me. You carry on ..... Hope you have a little respite from being so uncomfortable in the day. your partner sounds very good and caring but that s love xxx
It's hard not to feel sad but I am so thankful that I have a place to go like this where people understand me and can empathize with my feelings. We all need to feel like we belong and are accepted. This is my "safe place"!
Dear, dear Jane, for whatever it's worth, WE HEAR YOU! You have your Robert, you have us, you have your amazing way with words and forms and color. Out of pain you make beauty. In struggle you find strength.
I send a warm embrace with just enough shaking to make you wonder…
Hang on in there...better days will be just around the corner. This thing comes in waves and things will get better again. It's good to be able to come here and let loose among people who can totally identify with what you're saying.
I help with a Pain Ambassador program, and have spent many days with people who have chronic pain. They fight this invisible devil with such dignity I feel humbled. Then I too started with hip and leg main especially through the night. It's searing unrelenting and causes me to cry sometimes too. Pain management requires specialist support and experienced health professionals if you have not seen a Pain Nurse or discussed with your Doctor perhaps it's worth a look.
When I feel it's all too much I try and do nice things, even if I can't do much. Even just something small, yesterday I watched on YouTube the Ballroom scene from My Fair Lady, it was a peach. I hope you have a brighter day too.
I thank you for your support and your suggestion for Pain Management. When I was first sent to a Pain Management Doctor his first step was to put me on Morphine. When I complained that I did not like the way my head felt on Morphine, he "Poo -poo" me and because the morphine was controlling the pain he increased the dosage and sent me on my way. That's the last thing I remember until I woke up in the hospital 5 weeks later near death because of kidney failure.I was out there in the world on a major drug and I don't remember anything I did or said. I slammed my car into a concrete culvert and don't remember it. There are many stories told by friends about a person I don't know who did some very strange things.
Because of this experience when I went to see the next Pain Management Specialist they refuse to give me any kinds of pain meds. Instead I completed 2 courses of managing pain and I learned many ways to help distract myself from the pain, but really no amount of meditation or distractions like my artwork can take care of this unrelenting pain. My doctor told me I was too emotional and sent me to a psychiatrist who immediately wrote me a script for pain meds and muscle relaxers. Quality of the time in my life not quantity. My new neurologist thinks that all pain is product of something that happens in the brain. He said I should get off the pain meds and retrain my brain to not feel pain. That's all fine and good but who's going to tell my muscle disease to stop causing me pain., This has been a journey of 5 years and I am frustrated, dejected and in more pain than when I started. The doctors don't have the time to listen and get to know their patients and inevitably they begin to lump us all into drug addict and seekers and I am neither...
This is appalling, and totally unacceptable, totally. OK please it may help if you get in touch with Pete Moore paintoolkit.org/ and please mention me. If you don't mind can I tell your story anonymously to some other people I am connected to. I won't standby and do nothing, this affects us all.
As they say in Italian, "bastardos" (translation: drop the "o").
Your experiences w/these doctors just serve to remind me why they call it a medical "practice"... b/c that's all many of them do. Don't try to understand or have any compassion for the patient, just give 'em some [powerful] drugs and get 'em the hell out of there. Fuckers.
Before my DBS, I used to wake up every day and was surprised that I was still alive. I wasn't suicidal, but every day I thot, "I don't give a shit whether today is my last day on earth or not".
And crying? That continues even post-DBS. I keep thinking that the "guy police" are gonna come around and revoke my guy card. Almost any movie or commercial where somebody triumphs in spite of the odds (e.g., the movies Sea Biscuit and Secretariat come to mind. Why horse movies? Not a clue). I always have a box of Kleenex nearby. And I've watched both movies about 5 times each, so it's not like I don't know what happens,
If ever you want to chat,I have free nationwide calling and am home most days/nights. And that goes for our UK friends... I have free calling to most of Europe. I don't know how to keep things like phone numbers private on here or even if you can... perhaps email would be better for that?
JupiterJane, my prayer for you today is for a better, pain free day. As I read your words, my heart filled with sadness; but what I loved most about what you said was in the end. Through all your pain, you were able to get the strength to say that love wins over and you are determined to have a good day in spite of all. Never give up! (((jupiterjane)))
So sorry for your pain, hoping things improve for you. Have you ever talked to your dr about depression? I was on a med at one time , don't remember which one, and cried all the time s o went off it and improved. Maybe worth checking out
DEAREST JJ - HOW MY HEART GOES OUT TO YOU IN YOUR PAIN - I AM LUCKY AT THE MOMENT AND HAVE V LITTLE REAL PAIN - SO I PRAY THAT SOMETHING CAN BE DONE FOR YOU
I really feel your pain as I have been having a terrible time with my emotions lately because of crappy PD symptoms. Yesterday at breakfast my husband (I have a Tom like your Robert) and I both bawled our eyes out. It was very sad but a good release for both of us. Hang in there JJ we'll get through this together. This is the one place where we can all share our true feelings and that is wonderful.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and a big warm Yorkshire hug....sssssshhhhhhhh dont tell Robert!! LOL 
Good Sleep Provides Benefits in the Morning 
I saw my first neuro after over five years
YES I am still on Coconut Oil, aka CO
Holistic POSITIVE results
How do you deal with not letting the disease define you?
