Just an unhappy evening...

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
ViewsAskew
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Just an unhappy evening...

Postby ViewsAskew » Wed Apr 23, 2008 6:24 am

I wrote the novel below and then came back to the top to add this. I am making a request. I don't want any advice. I know it's well-intended. I know that I don't know everything. I know that it might help in some way. But, right now, advice isn't the issue. I just want someone to say, "Yes, life does suck sometimes. I'm sorry that you're feeling this way right now," or something simililar. Agreed? Thanks.
________________________________________________

What a horrible night. It actually started yesterday as the RLS worsened (that time of month). So, no bed until about 3 AM; recently I'd been lucky and getting to sleep by midnight.

Today, I was a bit grumpy, but not too bad. Then we went for a walk. We needed to stop at Walgreens to get my script filled. The pharmacist wouldn't fill it the way it was written (methadone trials and tribulations). Same company, same pharmacy that's filled it written this way multiple times. He (new pharmacist at this location) said that the new federal ruling doesn't matter because they have to go by whatever is more strict - state or federal. In this case, state is.

At that moment, I just was filled with sadness, anger, frustration, worry, and other similar emotions. I didn't have RLS more than once a month or so until some uninformed doctor treating me for PLMD kept me augmented for way too long. Most times I just accept that my life is forever altered and I do what I have to do. Sometimes it just gets me down. That is tonight.

Until some research comes along, I'm stuck with this: visiting the doctor (and paying out of pocket because he's not covered under my insurance plan) just to get refills, pharmacists who won't fill them, driving 120 miles round trip to get the meds, nights that it doesn't work anyway, breakthrough, constipation that is truly unbelievable, lowered sex drive (more like non-existant), moodiness, increased arguments with my husband, and a host more of things because I'm chronically tired, even when the RLS is under control.

It just isn't fair. I'd sue the jerk but even if I thought I could possibly win, what would that do? I'll have this RLS forever (unless they cure it). My brain chemistry appears to be permanently altered (it's been over 3 years, so any hope of changing is gone). So, what would winning do? It won't make pharmacists fill scripts that aren't filled out the way they want them, it won't make all pharmacists at one location all do it the same way, it won't make the government change the law so that my doctor can write refills one a year or something. It won't take the RLS away so that I don't have it every day for the majority of the day.

I usually calm myself with things like, "other people have it much worse," or "be thankful that you found something that does work. remember what it was like before you did?" etc.

But, at the moment, I don't care about that. I'm just tired of fighting the good fight. Of fighting for what seems so reasonable to me. Of fighting for some basic peace. Sure, it could be worse. Yep, many others have it worse. But this is me, right now, and it sucks.
Ann - Take what you need, leave the rest

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Postby sardsy75 » Wed Apr 23, 2008 7:11 am

Ann, my dear friend, yup, life with RLS and unco-operative docs, pharmacists, governments, yada, yada, yada, SUCKS!!!

It does and doesnt matter that you've had such a successful run with your meds.

What really matters is that you came HERE, where you knew you could write what was on your mind and KNOW that everyone who reads this thread will KNOW and CARE about what you're going through. You know this is the family that will stand by you during the good times ... and now ... the bad times.

You know how it works my dear .... Vent all you like. We'll all still love you at the end of it!

I don't care that you have it better than me in general. What I DO care about is that your having a rough time and had a gut-ful in general of RLS and life in general and that is totally ok with me. When it all gets on top of you and all you wanna do is scream and fight and tell everything and everyone to sod-off, you're allowed to. You know I'm NOT a believer in "put up with it & shut-up" ... better out than in!!!

If its any consolation, despite having a successful "run" with all RLS-things of late, Mother Nature and ye ol weather have been having a rip-snorter of a time with me with outta the blue thunderstorms. So, yup, you definitely have my sympathy girl!

I'm sending you a HUGE moonful of ((((((HUGGLES)))))) and positive thoughts to help you get through this!

Love ya!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby SquirmingSusan » Wed Apr 23, 2008 7:47 am

Sorry you're having a rough time of it, Ann. Yes, you're stuck with it and yes, it sucks. I hear you about the methadone side effects. I often wake up after aspirating food because stuff backs up out the top from the constipation. That's probably tmi... And that's where my sex drive went? Poor hubby.

Sending you good thoughts and cyberhugs

((((((((((Ann)))))))))
Susan, squirming Image

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Postby ViewsAskew » Wed Apr 23, 2008 6:38 pm

I'm about ready to allow hubby a consort, lol. It's got to be better than him begging and me feeling guilty :shock:

Edited to add: And it's not just the guilt - I want to want, if you know what I mean!
Ann - Take what you need, leave the rest



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Postby ViewsAskew » Wed Apr 23, 2008 7:02 pm

I found this...I think Susan may have used it before. It seems appropriate to all of us at times:

Image
Ann - Take what you need, leave the rest



Managing Your RLS



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Postby ViewsAskew » Wed Apr 23, 2008 7:23 pm

Nadia, thanks for the post. It's funny, but when the Foundation randomly chose Trevor, Lynne, and I for the moderator role, I had no idea how much it would affect me. This isn't the first time I've had difficulties - just like everyone else, it's an ongoing battle. I just don't post much about it. It's very hard to be in both roles, for some reason. Other mods have said similar things. You start to feel that you are two people - and it's hard to be the original member any more.

Back to relationships with those in our family...

Other people have this same issue, Rubyslippers comes to mind first of all, of having someone else that has medical concerns and of knowing how to handle all of that. My hubby's celiac disease is under good control, but he has ongoing problems from years of misdiagnosis and other autoimmune problems, such as occasional alopecia, something that certainly seems like fibro, contstant muscle spasms, asthma, etc. He also has a C-PAP and often doesn't sleep well, leaving both of us with brain fog or sleeping 10-14 hours because we're still tired.

Why bring that up here? Well, it's similar to what I posted to Nadia about as a moderator I don't feel that I "should" or am comfortable sharing the crappy times, I struggle with how much support I can ask for from hubby when he's almost always struggling, too. When I feel like crap, where do I muster empathy? When my brain hurts (the most common side effect from lack of sleep that I get), I am not happy because the body part I use to think and reason literally hurts and thinking and reasoning hurts. So, where do I find compassion for his aches, pains, fog, etc? And how does he find it for me?

It's an ongoing dance, I suppose. In reality, when I'm not having a pity-party, we do a good job most of the time. The hardest thing for me has been to learn to take a deep breath and explain the problem without anger, and look together for a solution. Talking things through without pointing fingers, with listening completely before I talk, trying to see it from his perspective, stepping outside of myself and looking at what I'm doing....those have been critical.

At times like this, though, those seem soooooooo hard. It takes a lot of work to get to that place I can leave me ego out of it. Some of us do this more easily than others, I think. Or maybe it's just always hard. I don't know.
Ann - Take what you need, leave the rest



Managing Your RLS



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Postby cmoore1958 » Wed Apr 23, 2008 7:37 pm

Ann,

I'm so sorry you are going through this right now. You are so right, life and rls suck some times. As a matter of fact, a lot of the time! What did we ever do to deserve this lot in life.

And our poor husbands. Try as they might, it's got to be rough on them. We all know that they don't have as much patience as we do when it comes to waiting for sex. :!: Maybe it's because they can think with something other than the brain on their shoulders and we don't.

I'm so tired of hearing "no pressure honey", "I won't bother you", "I'm trying to understand", etc. that I could just spit! So what if we take so many drugs at times we can't think straight; we don't get enough sleep to function well enough to watch a movie (which requires little effort); we are depressed already; etc. I seriously thought about making a sign for the wall above the bed for "open for business" and "temporarily out of service". :lol:

Thank you for starting this thread . . . I think most, if not all, of us needed to vent this subject. Hang in there girlfriend. We are with you.

Love and hugs,
Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

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Postby jan3213 » Wed Apr 23, 2008 9:54 pm

Ann~

I am SO sorry you are having such a hard time. I am really glad that you shared with all of us, because I think (a) it's really good for you to vent--let it all out (at least, I think it is); (b) it's good for the rest of us to focus on someone else (not that we don't, but you know...); and (3) someone else who is in your shoes might see what you've written and find out they're not alone.

And, I'm really glad you added the paragraph above your "novel" because I think sometimes all we NEED is a hug, someone to say nothing except "I'm here".... and, that's what I'm saying. I'm here.

And, as for sometimes feeling guilty because there are people worse off than you (or me--or us), there are always people worse off and always people better off. That doesn't change the fact that you--YOU--are having a really bad time of it right now. RLS sucks and, sometimes life sucks!

So, vent, just as you have done. Let one of us row your boat for you. I'd be glad to take up an oar.

HUGS!
Jan
No one is alone who had friends.

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Postby ViewsAskew » Thu Apr 24, 2008 1:03 am

I love the signs, Cyndi. I think I'll start on them tonight. Not sure that the Open for Business one will get much time, though.

It's not that I don't need to vent (or any other mod) or feel I don't have the right (in one sense), it's a sense that once you "have" to be neutral when things get out of hand you are removed from being "just one of everyone." It's like being a manager and a friend to those you manage (not saying that mods are managers, but in a way we do have to enforce rules)....people perceive (even when it's not true) that you are playing favorites. So, if you don't play, no one can accuse you of that. But, not playing has a price.

It's funny, Jan, I've always felt like you - that it doesn't matter if people have it better or worse....but that's for other people if you get my drift! I say it (and I mean it), but it's hard not to do to yourself. And, mostly, even though my RLS is under pretty good control with the methadone, my life is so radically different from what is was, that I consider myself chronically affected. I will never have the live I did. My brain function that I lost will never return.

Let's just hope my sex drive does :roll:
Ann - Take what you need, leave the rest



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Postby becat » Thu Apr 24, 2008 1:09 am

My Sweet Ann,

No matter what youand I have gone through, it still remains in my heart, my love for you.

Nope I can't fix anyhting for you. Yes I can hug you and offer my ear, fingers and a shoulder, but no real answers.

I do want to offer this thought to you.

We may be mods. and we said yes to save this board from the filth and spammers that got in the way of real communication. Ann, we are RLSers first. And we built this board one post at a time. And we did it for everyone.

We may be mods, but being you comes first, and being here with RLS comes first.
I will say out loud that I love you enough to ask that you never stop being ViewsAskew here. The mod stuff can wait and ALL, would agree with me.

Yeah so we're old members, 4 years in for me this month. 4 yrs. for you in Late Oct or very early Nov..
Happy Annv. :D And,

((((((((((((((((((((((((((((ANN))))))))))))))))))))))))))))))

my love and our moon for you,
Lynne

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Postby sardsy75 » Thu Apr 24, 2008 4:01 am

I totally agree ... Ann, you are an RLS'er first ... and Mod second. I can understand your not wanting to post as a member for concern out of blurring the member/moderator line. But, you are still one of us, and as far as we're concerned, if you gotta vent .... vent! PM's and emails ... you know who you can confide in.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The "Temporarily Out Of Service" sign has been hung above our bed for sooooooo long its got cobwebs :? :(

I've heard the quip "I can look at the menu, as long as I eat at home" so many times I feel like I should put a paper bag over my head, coz there ain't been any meals at home for months!

I know its annoying him. I wish I could do something about it. I wish I could "feel" something ... but the "want" just isn't there. I know what the cause is ... and i'd go cold turkey in a heartbeat just to "get some" but, having been there done that literally, that ain't gonna work either.

Nothing's been said, for quite a while. Not even cuddles in bed (the past few times, he's put a foot on mine only to have me literally bounce out of bed with an almighty RLS attack!). I know it plays on his mind. Yup its great when it happens, but he feels all guilty afterwards because it can take me up to three days to recover .... yes I know that can be read a million different ways 8) .... but in all seriousness, its the pain .... there usen't (prob not a word but my care-factor is zilch today) to be any problems but he can literally tell when the pain sets in .... and that's a pretty big hit to my ego coz it's all over red-rover and he becomes the concerned partner/nurse dishing out painkillers and apologising over and over again. But it should be ME apologising .... i'm the Dud .... not him!

All though it wont seem like a problem, it is: He's as fit as a fiddle and i'm just a lump of "what's gonna go wrong next?" I feel so bad and embarrassed about it its beyond a joke.

I go to bed, alone, every nite while he sits up and watches tv until around 3am. I feel so alone without him beside me sometimes that that feeling itself totally overrides my medications which are trying to put me to sleep when all I want is his company beside me. Yes, i've told him. No it's not made much difference. I give up!!!

Think i went a lil overboard on that topic, but it just needed to come out .... sorry!

Thank gawd for his love of fishing!
Nadia



My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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Postby Hos » Thu Apr 24, 2008 5:40 am

Hey Ann, hang in there for I know it gets very old to "fight the good fight." Luckily for us on this Board who you've SAVED us countless times and you will always fight the good fight regardless if you can or even should, for you are a good person, like it or not! :)
Last edited by Hos on Thu Apr 24, 2008 12:27 pm, edited 1 time in total.

cornelia

Postby cornelia » Thu Apr 24, 2008 9:29 am

Dear Ann,

I just want to say that I feel for you, for all of us, but especially for you today.

At the same time I want to thank you for being such an excellent moderator, but first of all you are a patient, who needs a hug from time to time, so I give you one now.

You know I'm a very severe (words from my neuro) RLS patient. Last year I said to myself something which is totally against psychology rules. It was when I noticed that my last resort, the narcotics, hadn't made life a lot better, only a bit. So I said: I don't expect anything from life anymore, my future life will be miserable.

And with this basic fact in my mind I discovered that every hour that my RLS was reasonable or when I had had a relatively good night I felt so happy, because it felt like a present. It works so well for me to not expect anything anymore and then you find the result is that every happy hour is a present.

Well, something like that. I hope I explained this well in English. Maye this will work for you too, Ann.

Pfff, this is a very long post for me, they usually are not longer than 2 sentences. So this is for you Ann, I think you are one of many formidable women on this board.

Corrie

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Postby Penguinrocks » Sat Apr 26, 2008 1:10 pm

in hopes of not ignoring your wishes of "no advice"


I WUV YOU!

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ViewsAskew
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Postby ViewsAskew » Sat Apr 26, 2008 6:03 pm

You guys are all great. I wrote a long response yesterday and the computer ate it (actually, it's a bizarre keystroke combo of a backspace and the shift key gone awry, I think, that backs me out of a post).

I was too annoyed at the time to respond. Now I don't know what I said, lol.

So, thanks again to everyone. I appreciate it. As with most of my meltdowns, they are temporary. The glass is half-full again, the rose colored glasses are in place.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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