Need to Vent

[sardsy75]

Figured this was the best place to have a general vent about everything in general. Doesn't quite fit under "newbie".

Popped in to see my GP yesterday, mainly out of sheer frustration at my legs and also because I hadn't seen him for a fortnight and thought he would appreciate a visit from one of his more interesting patients. We had a looooong chat. Didn't change anything with my drugs though. My next Neuro appointment is in 10days and we want to see what might happen when he sees me....having nothing but trouble....again.

My Neuro is definitely not in my GP's goodbooks as one of his other patients is also under said Neuro and is also not responding to said GP . The patient is my mum's best friend and she's about to be admitted to palliative care this weekend. I've never ever seen such an agressive form of Parkinson's and don't wish to see it again. It is NOT nice. Six weeks is the time she's expected to last, if that; because if she manages to cause her own pneumonia, which is her plan, she'll last 2 days.

I was ferreting around this site last week and found in amongst the healthcare providers list, the names of half a dozen Aussie Neuro's. I mentioned it to my GP and he simply said "a second opinion wouldn't go astray....your make the call and i'll write the referral." I got a call from the Neuro's rooms today and have an appointment for ....... Sept 20 2004. It's a long way off I know. I'm also friends with another RLS/PLMD sufferer who lives in Melbourne. She has almost convinced me to see her Neuro as well. I dunno....just a little confused about it all at the moment and really don't know where to turn. Thank goodness for frequent flyer points though, as they're both a long way from my home and don't come to visit.

Then, there's the other Neuro I was told about this afternoon. Apparantly fairly young , i.e. early 30's, and very upfront about everything and isn't afraid to say "i have no idea what you've got, but don't go away because i'm going to find out what you've got". He comes up to Rockvegas every three months.

As long as I know my GP is behind me for a second opinion i'm right. I might wait and see what my Neuro appointment heralds before deciding which one to run to first....if not all of them!

My other dilemna is that because i'm having more "downs" than "ups" at the mo', i'm getting no closer to getting back into the swing of things workwise. I'm all ready setup to start bookkeeping here from home and have one client waiting for the green light, i'm just waiting for a couple of "up days" in a row so I can get rolling and hopefully keep on rolling. It would be nice to get back to contributing to the household income again.

Hmmmm, i'm bordering on rambling now. Think I might try a little shut-eye for a while.

For those of you who've actually waded through all of that and come out relatively unscathed at the end, I thank you for the loan of your "ears".

Ciao
Nadia

[Rubyslipper]

Nadia, you can have my ears anytime. I really wish we could meet or actually talk but this sure is better than nothing. You are such an upbeat person even when things have "stopped rolling" along. You give me a lot of inspiration and support and I am truly glad to have met you even though it would be better under other circumstances. I vote for seeing at least two neuros. (Maybe the young one is also good-looking, an added bonus!) Keep us posted on your journey and vent anytime![quote][/quote]

[Rubyslipper]

Well, Nadia, it's my turn. I am in the need not only of venting but I need and ear from those who understand. I am not sleeping and my legs have decided to do the rumba all the time. I just realized that my husband really has no clue as to what I go through. He is pretty supportive and usually knows when I have a bad night, but recently he heard from an "expert" on the radio that most people who have "leg problems" can take care of them by drinking more water and losing weight. I asked him (after a very nasty look ) just what kind of leg problems they were talking about. He didn't know. Basically, it comes down to the fact that he just wants me to lose weight and this sounded like a way to tell me that came from a doctor. I was livid and still am. I do need to lose 20-25 lbs but weight does NOT cause a person to have RLS. I have had this for years and I was much thinner then. Granted, I am having worse problems now but I have weighed this amount for a couple of years and my worsening problems are just now occuring. Anyway, I no longer tell him my problems (yes, it's childish ) but I am truly in dispair. I am trying to follow Jumpy's info on Neurontin and it makes sense. But my problems started before the increase and follow no rhyme or reason. I am so miserable and my family is falling apart. I'm sitting here about to cry and I just need someone to listen. So thanks in advance and I will talke to you soon (I hope),

[becattx]

Well, I'm with the both of you. I'm ready for a good cry and a stiff belt of something. I would agree with you both...waiting for a good day to start my life over again. Waiting for the family to understand what's it's like to live in my body....day in, day out. I'm certain that my husband did not think that he was signing up for all of this. He's a truely wonderful man, I am blessed. He tells me to talk to him about it, I feel that his ears are too tired of hearing it. His heart is somewhat done trying to understand. He just wants it gone. My children aren't prepare for a mom that is only half human most days. My extended family for the most part is holistic by nature." Take 15 vitamins and drink this green stuff, it will cure you." I'm grateful they don't know, as I wouldn't wish this on anyone. However, it's not always easy to ignore or hide the effects RLS has on me.
I quit trying to work outside my home years ago. I now have a small art business. This keeps me living in hope of that the emptynest years, so to happen, will not leave me with no reason to get up in the morning.
God Bless us all.
Never fear that someone cares. Although, we do not know one another, always know that I care. I, too, promise to listen, support, and inform.

[Rubyslipper]

Thank you so very much. Sometimes, the only thing that keeps me sane is being able to talk to my new friends here. My husband should understand; he is disabled due to a neurological disease called CIDP. Sometimes I think he gets scared to think I might have to stop work too and then where would we be? He, too, is a great husband but has started either tuning me out or brushing it off. He asks how I am but doesn't really listen to the answer. As long as I can keep up with work, household chores and feeding him, he thinks I must be fine. I think I am ready to mutiny! I am one of those people who feel guilty if I take 1/2 hour for myself. I have to work on that. Luckily, our daughters are out on their own but rally around to help. They even gave me a day at the spa (massage, aromatherapy, lunch) for Mother's Day. I truly appreciate your response and thank God that I have you to listen. I hear the "vitamin and diet" thing quite a bit too. I am open to suggestions, but so far none have helped. Tell me about your art business, it sounds interesting. Take care and know that you have helped.

[becat]

No thanks needed Ruby, I feel that since we're in the same boat.....we should take turns rowing. I know I can't do it on my own, all the time. It is a wonderful thing to be able to lighten the load. It's a gift when others know where you stand, maybe even walk in our shoes.

Ruby, I am sorry to hear about your husband. AND I hear it when you say mutiny is around the corner. It's not an easy concept to understand...the constant exhaustion RLS carries with it. I love to hear "take a nap", that's my favorite.....Ok I will, for a couple of weeks. lol

I know the fear about the fututre. WE're looking at major open heart surgery in the future for my hubby. He was born with a hole in his aortic value. It's year to year for now. So far, so good. My prays are with you both.
I have a Doctor's appt. tomorrow morning. I am not so brave tonight. Knowing this doc. does not truely care for me, it's hard to ask for help. I am also trying to muster bravery, because I have asked my husband to join me. I live in the South and sadly, men sometimes listen to men better. I realize that is not JUST a Southern thing, but fear that it may be the case here. Having my husband join me seems like I've regressed, I need my man to fight for me. I'm trying to look at it as I need someone to fight with me. He is my partner in this, willing or not. He's a good man and will redirect anything he does not agree with. He wants his wife back and might climb a doctor to get it. Should be interesting. Looking forward to sleep tonight, as I can use my last Ambien. YEAHHHHHHH
Maybe, I will get the enrgy to work in the garden this weekend. Outside, in the sun.....what a concept.
Many hugs to you Ruby.

[becat]

nothing

[julie]

Ruby, I'm sorry about your struggles, as well as for others here. Please, keep the communication open with your hubby. Maybe, if he had copies of research and info directly in front of him, he may gain more understanding. I was just recently diagnosed with RLS. I've been trying to get in touch with my doc. in order to run some blood work. He didn't suggest it and from everything that I have read, it's better to rule out other possible causes. Lately, I have noticed weakness in my hands and stiffness through out. It's scary to think of being limited and getting tired so quickly. Yet, having the urge to move regardless. Quite fustrating to say the least. I'm 33 yrs old with 3 children and been married to hubster for 14 yrs. He has been through 3 back surgeries and will suffer from discomfort and limits the rest of his life. What a match, huh. Not everyone will understand what we go through, but you know what? It's okay. They don't have to. We do have connections with support through forums such as this one and with others who experiencing challenges such as ours. For some people, it doesn't matter how much they are educated. They still lack compassion, understanding and the ability to think outside of their own circle. But, keeping your family close to you is important. Hang in there. We are here for you.

[Rubyslipper]

Thanks for listening and understanding Things aren't any better with the legs but I think maybe hubby is starting to understand that there just might be something really wrong here. I mean, no one in their right mind will walk the floor until 1-2:00 am just for sympathy. He still thinks losing weight will make a lot of difference. Any skinny people out there with RLS? Bet your symptoms are just as bad as mine. Yes, I could stand to lose 20 lbs but I have had this for several years and when I was thinner so DUH! But I will try losing weight not just for general health reasons but just to make sure he isn't right. Boy will I have to eat crow if he is!! Anyway, let me know when it's my turn to row (since we are all in this boat together!)

[jan3213]

This is to Ruby. I'm a new member and I realize that your messsage is a few months old, but I just felt I need to reply. I really feel for you!! Too many people (relatives included) don't have the foggiest idea what we all go through!! RLS isn't cancer, it isn't terminal, but it's AWFUL!!!!! And, I wouldn't wish it on my worst enemy!! And, I know SKINNY people who have it, Ruby!! It robs you of something we all need--sleep and peace of mind. Yet, we're all expected to function normally as if nothing at all is wrong with us after we have walked the floor all night. I am so fortunate that I have a husband who totally understands. He has walked the floor with me, afraid that I would take too many pills to try to get to sleep. I'm also fortunate that I have a great doctor who is understanding and willing to work with me to find that right combination of medication to help me when I become too used to the meds I'm on and he needs to increase dosage or change meds. I've had RLS for approx. 20 years. I'm sure my dad had it (he's deceased). Before he died, he was diagnosed with Parkinsons. My adult children (I have a son and twin daughters) are showing signs of RLS. Hang in there!! At least we're living in an age where we can get help and more and more people are becoming aware of RLS.

[Rubyslipper]

Thanks for your letter. The support I get from this site is just wonderful! My husband really tries to understand but it's like you say, it's not cancer or even something the doctors can get a handle on. He has a disease called CIDP (for short) which RLS is thought to be a distant relative of. He has been in the hospital several times with it and it is lots more severe than what I have so he just kind of dismisses RLS as a minor inconvenience. Not that he isn't sympathetic, but he's on disability and I have to work so he thinks I am functioning just fine. I get so tired at times! It's not just the walking the floors that gets us, it's the mental anguish (not a good word, I know) that goes with it knowing that nothing you can do will stop it so you can get some sleep. And the next day is coming up, back to work! In the middle of this, we are remodeling our kitchen doing all the work ourselves. It's something I am enjoying but now we are on a timeline to get done so the cabinets can be installed and we're behind. STRESS!!! But life goes on and with friends like all of you, I will survive. Wasn't there a song "I will survive"? I think it was about a man leaving a woman tho'. Maybe my new theme song should be the old Helen Ready song "I am woman, hear me roar"! Now I'm rambling so I'll quit. Thanks again!

[sardsy75]

Hey there girlfriend

First of all ... STOP STRESSING!!! Take it one day and one step at a time...you need to calm yourself down BIG TIME. If I could hop on a plane and come give you a big hug and some help...I'd be on the next flight! You are only making your RLS worse by stressing about everything.

I can relate to the support situation with your husband. My relationship with my mum, up until recently, has been pretty much the same. She has Fibro, ME/CFS and no immune system and is constantly tetering just on the "well" side of life thanks to Dr K, our family GP. However, I learnt from a young age that it was no use whining about an earache or a sore throat as she would dismiss it and tell me to take a panadol and to get over it.

You need him and he needs you, and somehow you will find that equilibrium, but like all relationships, there are the ups and downs.

I know you are a fighter and you will get through this stage, and at the end of it you will sit back and marvel at your new kitchen and think "wow, I did that!".

You know that my ears are available for "gnawing" on at any time!

Take care of you, take it one day and one step at a time and STAY POSITIVE! I know you can do it!!!

Lots of ((((((BIG HUGS))))))

Nadia

[jan3213]

Ruby

I replied to you a couple of days ago and just read the reply from Nadia. She's right--stress DOES make RLS worse. You do need to try to relax, but you also need to vent and that's what this site is about, isn't it? I've read several replies from you Nadia, and you sound like a great person. I bet you WOULD hop on a plane if you could!!! You sound like such a positive person and a real fighter--someone this site needs!!! I think I'll learn a lot from you. And Ruby, keep your chin up!! And when you feel the need, VENT AWAY!!! I'm sure one of us will be awake in the middle of the night!! I can't tell you how glad I am that I found this site!! Finally, people you "talk" to know what RLS is like. After having it for so long, I'm pretty used to it, so it's just a way of life for me, but it sure is nice for someone to really understand!! Anyway, glad to "meet" you Ruby and Nadia!!

[sardsy75]

Hi Jan

Thankyou for your kind words...they really brightened my day!

I really, really, really would love to jump on a plane and come and meet you all for a great big group hug but hubby doesn't think i'm up to another longhaul flight just yet so fingers crossed!!! It took me quite a while to "get over" our trip to the U.S. and South America back in 2002 and I was "relatively healthy" at that time I would dearly love to go back and see more of the U.S. as well as Mexico, Egypt and Tibet.

At age 28 I have literally found out the hard way that the only way to beat whatever is thrown at us during our lives is to keep fighting and stay positive, no matter how down in the dumps you feel. This year alone I have been to five funerals, three of them were for very, very close family friends, and it makes you realise that we need to cherish each day that we have. Tomorrow is always a new day filled with new possibilities, but we should also make the most of today.

As for Stress...I walk away from it now. I have just completed nearly two weeks consulting work with the company I resigned from in Feb this year. Those two weeks were quite stressful, and each time the stress levels started to get passed managable I would walk away from the situation, find another corner of the office, or go outside into the sunshine and very, very slowly, count backwards from 100 and think happy thoughts! It works - but hey, i'm quirky kinda gal!! And it's cheaper than taking up smoking

Ruby, if you're reading this, this could be a new technique for you to try on that dang boss of yours

On that note, I'll leave you all to ponder my ramblings.

(((((HUGS))))) to all and Sweet Dreams to those who manage to catch some ZZZZ's.

Take care
Nadia

[Rubyslipper]

Nadia, sweetheart, anytime you decide you can handle a trip here, let me know. I will give you a grand tour of the kitchen!!! It is coming along slowly but it IS coming along. And Jan, you are welcome to come too. Things are still just as stressful (actually even more so) but I am dealing with it better. There is nothing quite like talking to people who understand. I have a real problem with wanting to "please" people, even those who are jackasses. But I am trying to teach myself to walk away, just like you said Nadia. I have a beautiful little cup made out of olive wood from Bethlehem. It is my "problem" cup. When I find myself stressing over someone's hatefulness, nastiness or my bad thoughts, I mentally put them in the cup and leave them there. I don't mean to preach to anyone, but I just give them over to God and let Him deal with them. It works! Sometimes though, they try to creep back out and I have to stuff them down deep several times but it is getting easier! One other thing that helps...I have a new puppy. Just watching her play is a real stress reliever. Her name is Sassy, and she sure is! Anyway, if at anytime any of us can meet in person, that would be truly wonderful. In the meantime, thanks guys! Sleep well.