Riding the Big One (RLS 24/7, Hanging Ten)

[ViewsAskew]

I surely understand Mr. Hyde. I have often wondered why my husband didn't leave when things were at their worst here. The medications, as they do you, affect my mood and mental health in negative ways. I long for what I perceive as the "real" me. I guess that is a fallacy, though, as the medicated me is the only way that a "me" can exist, so this must now be the real me. Huh.

[JimmyLegs44]

Interesting conversation. This is the main reason I want to take a prolonged drug holiday, to find the real "me". I've long suspected that Mirapex is causing memory and attention issues (my wife and kids tell me all the time how I don't pay attention in conversations; I don't even realize I'm doing it). I also feel anti-social sometimes, and blame this on the Mirapex, too. It feels like the real "me" is inside screaming "I WANT TO LIVE, DAMN IT!!" I'm hoping the drug holiday results in a clear head and tolerable symptoms. If not, the medicated "me" will have to do, I guess.

[badnights]

I want the same thing, jimmylegs. I want to get off all meds and find out what I'm like.

I was so close! I changed my diet (I've blabbed about that in another topic) and I was getting better and better, cut my meds almost in half, but then after 3 weeks in the field last August on freeze-dried carb-rich foods, all my issues came back. Worse than that, I've been back on the diet for months, and things are still just as bad. I haven't raised my meds again, but I am suffering more, sleeping less and working less.

I am not hogging your thread eefall, because this is relevant - - I have been reading a lot about gut microbes lately and who knows if maybe your microbiome isn't disrupted and some serious probiotics would help? Multiple neurological / mood / immune-related symptoms with no apparent cause make some doctors think of gut-biome disruptions.

[Polar Bear]

badnights - how horrible to have so much improvement and then find yourself back suffering more/sleeping less. (hugs)

[Polar Bear]

[quote="Polar Bear"
Last night I found myself in the guest bedroom lying on my stomach with knees bent and legs waving, because I was so weary walking. It's hard to know what to do with the twitching arms whilst in this position. At one point I had my hair in my hands in desperation. It was a breakthrough that didn't want to go away.

This is a quote from a recent post of mine. I'd have done anything that night to have relief from symptoms.
Since then my nights have been somewhat easier - - but who knows when the next breakthrough might an unwelcome visit.
RLS is indeed the unwelcome guest that always turns up and sometimes decides to be a bigger pain in the a** than usual.

[Polar Bear]

eefall - I hope your family leave is readily set up for the start of 2016.

[EeFall]

To me or not to me that is the answer. The question is did I die 16 years ago. Likely yes. I have now lived over a quarter of my life with this condition at the very worse, one doctor said maybe 1 in 10,000 have it like I do but then he said he had never seen it as bad in his 30 some years in practice.

There is no question that I am mentally ill, I doubt now it is just the meds. I think much of it is the RLS itself. It has changed me and I seriously doubt now I will ever get better. All I can do is to do what I can to get through the rest of my life. I have good days but I avoid people in general, I don't feel well enough most of the time. Every little comment hurts me, that sums my current life up and I won't even attempt to defend myself in fear of getting upset.

Thank god for my wife who has known me for most of my life, she was there when RLS hit me, without her I wouldn't have a prayer.

[Polar Bear]

Such a sad post eefall, so many of us will understand you. I've lived with this for 50% of my life. It has certainly affected my emotional and mental wellbeing to dome extent.
I am sorry that you are feeling so low. Will you talk to your doctor about this.

[ViewsAskew]

I have no words.

[Sojourner]

[quote="EeFall"]I am 13 books into a science fiction space opera. I enjoy it almost too much, I love getting away from my life, terrible but true. I should stop complaining, at least I am working. That is a lot I suppose.


I take it that mean you are writing and not reading. Sorry if I missed it earlier.

Hope all here find some peace this night.

[Sojourner]

Ooops, didn't mean to enlarge the font size.

[Sojourner]

My turn to ride the big one, tonight. Longish story, but I think I am someplace in the middle of a major anxiety/panic attack regards my rls symptoms. Have thought about driving to the ER or calling 911. Never really experienced this--at least not for an extended periord of time. I'm scared. Have taken several hot baths which help momentarily at least. Anyway, have packed a bag just in case I need to call or go. I'm afraid that if I give in or somehow just don't fight through it that I will somehow never be the same and that rls will have one yet another battle. I don't want to let my family down. Not sure what they would do at the ER anyway. I do have some Ativan available which I have used for the night following the nights with no sleep. Never really just took them for anxiety. I'll have to begin re-reading some of the archive threads with respect to anxiety, medications, do's, don'ts etc.

I'm just gonna ramble here as the typing seems to help a bit. I think I've posted or expressed these sentiments before so if I do it again, why not!

Quite a few years ago I was a more freqent poster here. Like you EeFall, PolarBear, ViewsAskew and many others I am a long time rls'er going back at least 50 years. Ouch! Still remember the Quinam (sp ?). I suspect that I have been luckier than most during some of those years but, like many of our walking wounded, times have not always been good and the collateral damage just seems to accumulate. But, the stories, strength, and caring of those who visit here and give so much of their time and selves is amazing. I am grateful for you all and

wish all who visit here some peace this night

[EeFall]

I am sorry you are having problems. I woke several times last night thinking what a screw up I am, that I have to continue working and I can't retire and that I never really did all the things I wanted to do. Sitting here though I thought about both of my grandfathers, one was a retirement Navy man who was more of a city slicker and the other was a farmer all his life.

I remember they were both happy men although they really didn't have much except the love of a good woman. I thought I actually have that too. In fact I think they would be happy to see how I turned out, except for the medical problems of course, but I can't do anything at all about that. I need to focus on living in the moment and enjoying life life my grandfathers did before me. They didn't have to have much to be happy and I shouldn't have to either. I think a lot of my worrying is because of the Suboxone and Gabapentin messing with my mind. I just need to continue to realize that and try to be happy with what I have.

I hope you are doing well. By the way, although I have written what amounts to 4 poetry books and one science fiction books the books I was referring to were one's I was reading. I got to the end of the 15th book, the last in series, and they killed the main character!

My turn to ride the big one, tonight. Longish story, but I think I am someplace in the middle of a major anxiety/panic attack regards my rls symptoms. Have thought about driving to the ER or calling 911. Never really experienced this--at least not for an extended periord of time. I'm scared. Have taken several hot baths which help momentarily at least. Anyway, have packed a bag just in case I need to call or go. I'm afraid that if I give in or somehow just don't fight through it that I will somehow never be the same and that rls will have one yet another battle. I don't want to let my family down. Not sure what they would do at the ER anyway. I do have some Ativan available which I have used for the night following the nights with no sleep. Never really just took them for anxiety. I'll have to begin re-reading some of the archive threads with respect to anxiety, medications, do's, don'ts etc.

I'm just gonna ramble here as the typing seems to help a bit. I think I've posted or expressed these sentiments before so if I do it again, why not!

Quite a few years ago I was a more freqent poster here. Like you EeFall, PolarBear, ViewsAskew and many others I am a long time rls'er going back at least 50 years. Ouch! Still remember the Quinam (sp ?). I suspect that I have been luckier than most during some of those years but, like many of our walking wounded, times have not always been good and the collateral damage just seems to accumulate. But, the stories, strength, and caring of those who visit here and give so much of their time and selves is amazing. I am grateful for you all and

wish all who visit here some peace this night

[Polar Bear]

Well done Eefall, a writer, wonderful

[debbluebird]

I think that's one of the hardest things to do, keep focused, and remember what is important in life.