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Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/7/2008 10:46 PM (GMT -6)   
My question concerns depression. I've lived my life pretty free of it. i have rather positive outlook and a more 'high' attitude than i do a low one. Ive never really suffered from it with the exception of my mom's death.
 
While reading some of the MS mag's I came across some articles that said for instance: "once i became dx'd with ms i didnt move off my couch for 3 months, the shock hit me and it took a long time to recover".
 
Many more depression articles were featured in that mag. Also we all ( i think anyway) know of some of the things montel's went through with depression. It's not unusual given the disease itself  but on top of the the lack of compassion or validation that we oft times do not recieve from even our doctors.
 
I was curious as for the first 3 yrs i was kept buy with appointments, being proactive and really constantly being referred to this and that. Now that its all slowed, which omgosh i was so happy the fist time i looked in my calendar to see 3 straight days of no appts! I have 3 ins and its been suggested to me that this is why ive had so many appts (money), either way it kept me, lets say from sitting and thinking alot..i was on the go (struggling, but nevertheless on the go).
 
I have no clue really as to how its affected you or others. i once again reaize that this is a private question and those who feel like they'd not answer it, i truly take no offense.
 
Its just that ive been noticing alot of free time now that leaves me and my mind with the sensation thing. i do hobbies and i really do try the best i can to keep it from defining me.
 
im just hoping this will pass soon.
 
Anyone have any ideas on how it affected them and maybe if it were a change in mindset that pulled them out of it? Has anyone such as the example in the ms mag experienced what he did>
 
Just trying to get a feel for whats normal (crazy word) given our disease. Im sure its widely different with all but Im curious if all have went through their own bouts or if any had none at all..or some struggle daily. Just an idea that i feel would help all of us again,  to see the differenes and the same type of things.
 
MORE improtantly if you did or do suffer from anxiety/depression due to our dx, what do you find helpful? Is there anything that you can say 'thats when my mind set changed', or this is when i decided enough was enough. Or perhaps day by day i do this and that to keep it at bay.
 
thanks for your patience of a quizzical mind
 
 
kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 2/7/2008 9:49:03 PM (GMT-7)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/8/2008 6:35 AM (GMT -6)   
Hey Kiera

Hummm...well that's a loaded question! I did find myself a bit depressed not so long ago. Let me kinda go back tho. My daddy died in Aug and was buried the next day. Hurricane Katrina hit the day after in 2005. We had no power/water/light/contact with the world for two weeks. Needless to say i didn't mourn. Fast forward to Jan 23rd of 2006 and my dear dear Uncle Tucker died fairly suddenly. Then Feb 2005 i began to notice probs that seemed like ms. During all this time i was moving at break neck speed thru my days. Still not having dealt with any of the grief of it all. I honestly felt i had...that i didn't need to 'deal' with anything else. I cried at both funerals, i worked very hard and cleared trees from my doorstep and washed clothes by hand for a family of five and was being very proactive about my health probs. I had no concept that i'd be here two years later with no answers or dx to anything. I really really thought i'd be one of those people who would just find out right away. I'd read and read and READ up on ms. Still tho, i never thought i'd be sitting here today with no answers. No...to answer u'r question...yes, this can be depressing. The one bout of depression i can define was clearly my need to just mourn what i'd been thru and who i'd lost. Still tho i find myself feeling healthy about those issues and maybe not so healthy on the 'limbo' issue. The way i deal with that is to not deal with it for now. To sit and think of how i'd feel IF i had ms, well it's a bit overwhelming and just not something i want to think about. I DON"T have ms...so i don't have to face it. If later do have ms then i will have to figure out what to do then. The limbo thing is a bit ...no not a bit...a lot frustrating. U have all these very clear symptoms and u KNOW something is wrong, but u can't get any clear answers. To make things worse...there are times when u think 'everyone HAS to think i'm faking!'. I try very hard not to talk about my symptoms or how i'm feeling. I don't want to be tuned out. So far my family has been very supportive and caring and i hope to keep that. I can't imagine what it must feel like to not only in u'rself feel a bit of a hypochondriac, but to think others feel that way too. So all in all i just don't face the possibility of ms for now. I know it's out there...that's close enuf for me. That's what i do day to day.


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*

Post Edited (rhondab) : 2/8/2008 5:40:43 AM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/8/2008 7:30 AM (GMT -6)   

I think that when anyone is hit with a majorly traumatic life event -- diagnosis of an illness, death of someone near them, external event like the hurricane (in my case, a house burning down around me, another house flooding us out...twice...), discovery of a long-held family secret that is life-changing (like you and I experienced, Kiera)...

there is a real possibility for depression to set in.  I think there are (at least) two forms of depression, which can overlap.  One is the feeling that starts out as shock and dismay, and comes with new and crucial information. The mind (and body) has to process that, sort through it, find out how the new information "fits" into one's current existence, find out how to balance the new "reality" with what is already going on in one's life.  Some folks seem to be able to process that sort of "without notice". For example, I found out that I was diagnosed when my neuro called me at work to give me the news.  When our conversation was over I hung up on him, called my husband, told him; called my brothers, told them....and continued working.  But all the while there, in a corner of my brain, was a long "conversation" going on. "Good grief! What does this mean? What exactly is MS? What is this going to mean for our future? We'd just thought about having babies...guess we'd better rethink this! How is my mother going to take this? (we already had a strained relationship) I'm the major wage-earner right now; what's going to happen to our income, my health insurance.."

Don't think that this "conversation" only lasted that day! This was an on-going sorting-out tha was happening internally, and some externally with my husband...and to a large extent, still goes on as circumstances change, or as new "events" happen.

Other folks seem to "shut down"...curl up on the couch for months, or stay in bed, or withdraw from "normal society".  Other folks will lash out, become belligerent, resentful, even hurtful to those around them. I liken that to a wounded animal -- you want to help it, but it's all teeth and fangs and claws and snarls and you can't get near enough to help make it feel better. Sometimes it just has to stay there under the porch and mend on it's own time, and it'll come out when it's ready....

MS is a very uncertain disease -- as we've all found out, it can change rapidly, exacerbations can happen suddenly, there is no assurance that how you are now will be how you are in the future...and that uncertainty can be depressing, and challenging.

And then there is the depression that can occur -- at the same time -- which is a chemical imbalance in the brain. That's the kind of depression that responds best to medications, and care from a psychologist/psychiatrist, talking through some of these things, and taking the meds to help.  Some people can't internally process well and need the talking. Others (like me) don't talk well and might not do as well, talking through all this "out loud".

I think the challenge for you, Kiera, is complicated by the possibility, too, that it might not just be MS that is challenging you, but some other things going on (the sleep disorder issues, for example), and having to deal with multiple different issues isn't easy. And like Rhonda, "living in limbo"..knowing something is wrong, not knowing what it is, not having a clear direction to follow to take care of it.

And with illnesses, all that is complicated by our very-human need to "be fixed".  We're seduced by all the folks around us and by all the drug commercials that suggest, "hey, take this med for 3 weeks and you'll be FINE!!!", when we know that not to be true.  There are indeed sometimes illnesses that can't even be identified, much less be fixed.

Another challenging human trait is our need to be in control. And MS..and too many other chronic illnesses..don't allow us to have much control.

I spent a lot of time the first couple of years after diagnosis just struggling to live. I had that major exacerbation which required 3 months hospitalization. I wasn't out of the hospital for 10 days when I had a bout with pulmonary embolisms..blood clots in the lungs. That sent me back to the hospital for 2 weeks, 10 days in the ICU.  Then a series of exacerbations after that. All the while we were having the discussions about "no kids now for sure...husband has to get a job that has health benefits...boss is giving me fits about my absences...house burns down...now what..where do we go...what do we do now...etc..."  So it was probably 3 years down the road when I just woke up one day and came to these conclusions:

Here it is, year 3, I'm still alive.  I managed to survive all that..and managed to survive a lot of other...uh.."stuff"..growing up; I'll survive this, somehow.

My husband, my rock, is still here (one of those discussions we'd had went sort of like this: "Hey, we have no kids, financial obligations are piling up, I don't know where this MS thing is gonna take me, you can split if you want...  He didn't "want"...)

I don't have control over this MS. All I do have control over is how I'm going to respond to life. I can be miserable and make everyone around me miserable...well, at least more miserable than they are now...  Or I can simply live each day as best I can, go to bed, then get up and do it all over again. 

And so I do. And some days I do well at that, other days suck.  But I just keep on keeping on. On the good days I get a lot done (well, a lot for me!! :) )  Other days are stay-in-bed-with-a-couple-cats-and-a-pot-of-tea days.  I don't listen to what others tell me I ought to do, or should do or if only I would do I would be better. I just do what I can, and let the rest go.

I don't know if any of this is helpful.  Early morning ramblings with not enough coffee.  Take care.

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 2/8/2008 9:04 AM (GMT -6)   
It is very depressing to lose a parent....To lose what you once were..But as Rhonda and Uppity said you go on..When the special guy (whom your not married to) decides he doesnt want a sick wife and walks away it hurts but if it didnt we wouldnt be human.It hurts to find out who you thought were your friends dont want to be around "a less than perfect body".Is depressing too but enjoy and cherish what we do have and of course there will be days when your "blue" but when a dog wags her tail at you or a child who never knew you without ms.....wants to be with no matter how different you may play a game Just sit back and savor those moments.Oh and Rhonda I can relate to your limbo issue........I waited and waited but I did things too. Things that i enjoyed doing if I had a "spell" there was and always is tomorrow like the old saying goes "if you fall off a horse get back on"So after all that rambling uh sure your gonna be depressed just human nature but dont let it consume you..........barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/8/2008 9:12 AM (GMT -6)   
I love your early morning rambling , dont have too much coffee@ lol, it really was fascinating and very true.

I guess from someone thats been through all you have I was hoping for a "Ive learned to adjust and I do not let things get me down", but I knew that wouldn't of been very honest with MS. I guess its frightening when you find it hard to move through days at a time and then you consider the future. Wondering how on earth ill get through that..or if I will.

I was always so positive its thrown my family for a loop. I was the one that saw the silver lining and you couldn't give me a problem that I saw as unsolvable. When my family seen me shake---they shook. I think they had a bit of this "shes' invincible" thing going on. Even my younger brother said "but you were supposed to take care of me when we got old". I said, well guess what! Life is like a box of chocolates................just kidding, but whatever i said got the point accross. Theyve (him and his girlfriend) hidden in my bathroom and talked about me dying. When they came out i asked Why would you sneak and talk like that ? (it was the first attack theyd ever seen and it alarmed them), a feather could of knocked them both over as i'd guessed it to the T.

I really wish this thing about:

If i speak about it, ill make more aware--but will be called a complainer
when i have spoken about it--ive been told a story of great uncle charles who had brain cancer but never found without a smile.

I just feel it robs us of being able to communicate without it being taken out of context. I understand support groups but at the same time in my own home if i notice a leaky faucet im probably going to say something about it, and i hate going around trying to bite my tongue from mentioning how sore my skin is in the mornings. Now mind you, i know my husband cant help my skin, but a lil compassion seems to me would go a long way.

this journey is a long one and to have someone to lean on in hard times is a total blessing. For those of you who do have a person or person's that you can lean on be VERY thankful. Mine simply nods and continues whatever he's doing. Id blame myself that ive overburdened him, but its been that way since day one.


Not even sure why im rambling now. Too much coffee perhaps? lol.

Ms. uppity i can relate to your posts so well and feel a connection of other/deeper things that dont really need to be said outloud here. I thank you for giving of yourself..that is amazing that someone who suffers themselves also gives. that holds true for everyone here. When i dont have really anyone as a support system. I have 1 friend who isnt "afraid" of it and by george she really will not laugh or find any oddities too big for her. .Im thankful for her. But i fear i drain her.


Going to get more coffee................

thanks

kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/8/2008 9:28 AM (GMT -6)   
Oh i did wish to share this with you!!! I have a friend who's suffered RSD for 17yrs and she remembers the day they dx'd her. She was told to "go home, theres nothing to be done" RSD can come from even a fingercut..but hers came from trauma of the spine. She suffers daily . There are no remissions for her. A baby bathtub toted around and filled with very hot water can relieve her for an hour or more. She works at applebees ,and if you really knew her youd be like, no way can she work! She is having trouble now because as a "server" (not a light job) her toes are curlng under. The knots on her spine are very hard and visialb and the pain unrelenting. The reason i felt a need to mention her was she suffered from depression and even the doctors gave up on her....until she got MAD? She decided atrophy was going to set in (it would of) and that she was going to keep moving no matter how much it hurt. She's had times that shes worked harder than the healthiest person around while dying inside. But needs the income for lack of insurance. Her primary doctor has been her only help. He began a pain journal when the other doctors gave up , he told her...this isnt the total answer but we have to start somewhere. His compassion helped her. She says the very fact that he didnt agree to "give up on her" did wonders...and motivated her to get angry and get moving. There are times she has to tell herself to slow down.....for her body wont heal if she doenst find that correct balance.

They now call it by another name, its been around since the civil war. Basically it comes from trauma and its an unforgiving disease. Crush your fingers in 1975? The look fine, doctors are astounged , only to have them turn paper thin and black 10yrs later (which is what happened to Gail), it never forgave the injury.

The other reason i mentioned her is shes an inspiration. She refuses to let it keep her down. NOTE that i said KEEP her down. It gets her down for sure. Our phone talks i hear her voice breaks and she asks me to forgive it but that the talking of it overwhelms her, i let her know it doenst bother me and she proceeds. She then , after many breaks and tears will rally herself back up and set up a date for that coming friday (this woman amazes me). Its like , she hurts as bad as we do, she knows it.....she was dx'd with MS at first and to this day i wonder if thats not what shes got. But she feels the same about me. The symptoms are so close. She cries, then she gets mad. Its like she views life as precious and she cries over the fact that maybe she cant feel great that day but in comes the fighter in her and she refuses to let it rob her of even a date on a friday night!...she doesnt seem to let the planning bother her..afterall , if you can continue to work at applebees with toes curling under, i suppose the date isnt scary, she knows she will compensate in one way or another..

I guess I want you to know about her. Theres so much less known about RSD that the hypochondriac looks we get,  she faces even more than us.

I wanted you to know also that she hurts like us, and has found a way to do both: BE depressed/cry/scream/kick, and then get up and get GOING!!!

I guess i hope one day i can be like her...shes soft inside but that soft heart def. steps aside for that head of steel lol.
 
She told me frankly, "Kiera, if i didn't  move I knew Id die, and I know theres a purpose for me. God has me here for a reason and i refuse to let the RSD define who  I  am. I love the fact that at the same time she doesn't minimize what she suffers with. She looks at  it head on. It hurts her immensely but then she somehow uses that pain to motivate herself to do what others dx'd with what she has, have not been able to do. He mother, bedridden is also cared for by Gail. Who tells her she isnt sick and that she needs to stop whining. (sound familiar)?...
 
I guess shes  one person that i truly can see the raw pain in her eyes but beyond that i see determination....Gail's not going anywhere except where she plans on going!
 
 
When i re read my own posts I worry that my words do not come across as intended. I'll try from now on to make it a little more understandable for all. (might have to hit edit 4 extra times)



thanks

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 2/8/2008 8:42:32 AM (GMT-7)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/8/2008 10:52 AM (GMT -6)   

I should add this..

I think folks who don't themselves have a chronic illness don't want to hear about chronic illness.  When I'm asked, "How are you?" I usually respond with the polite, "Fine, thanks, and you??"

unless I really KNOW that the person really wants to know how I'm feeling. Which indeed might be "fine" (at least as "fine" as it gets for me..), or might be sucky, depending on the day, sometimes on the hour.

Family are all-too-often like the first responders..."..fine, thanks, and you??"  Why? I don't know..except that they're scared, too, and dismayed, and want to FIX things, and things aren't "fixable".  And not many folks really understand what MS is, anyway (just like your friends ailment...not much understanding there.) It's often confused with muscular dystrophy, for example. Or folks hear "illness" and automatically assume it's "terminal", not chronic. Or like my mother, hear that I'm " broke", not "fixable", not "perfect", and want nothing to do with me.

You do find out pretty early on, who are true friends and family and supporters..and who aren't. And the "aren't" just sort of fade away, or worse -- are constantly "on your case" about ways to "fix what is wrong with you".  My sister-in-law, for example, is CERTAIN that I'm going to hell (I'm not a fundamentalist Christian like she is), and if I would just PRAY harder and ask God for FORGIVENESS, and CONFESS my SINS, I would be HEALED.

I don't THINK so!!  lol. 

Anyway.  I don't really talk with anyone..including my husband..about my MS on any sort of daily basis.  He knows very little about what I go through each day just to get out of bed.  I've talked more here..and more in the last few days..about MS than in the 25 years I've dealt with it. I just do what I have to do each day to live through that day, and get on with the next.  And when asked, "how ARE you??" I respond with "Fine, thanks, and you??"  and let it go.  :)

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


mamana monster
Veteran Member


Date Joined May 2004
Total Posts : 2236
   Posted 2/8/2008 12:54 PM (GMT -6)   

Wow! Interesting stories and question... I can't base too much on MS and depression, although I have been experiencing some with it lately, but I can relate to depression and a chronic illness. Prior to MS I was dx'd with Ulcerative Colitis in 2004, my only child was a junior in high school and I had always been very active in the community, school, etc. Then...BOOM! Life as I knew it ceased, I was forced to stay home, for reasons we won't get into on this forum but needless to say going out was not an option. I missed so many activities, so much of my son's life during the first year of trying to find a medication that would put me in remission. Very depressing. Not too mention the prednisone and the 75 pounds I gained with that, went from a size 4, well to...ugh. Now...MS! Honestly, I think I'm good on the auto-immune issues!  In between the UC and MS dx I have had about 10 stays in the hospital that included two surgeries, one major... when it rains it pours! eyes

With all that said, I have been blessed to have a supportive family, and yes, you find out real quick who your real friends are. I do take Wellbutrin for anxiety each day and it seems to help balance me out. Otherwise I think there would be more days where I would lay around and boo-hoo. It has been a bit more difficult the past few months while being dx'd with MS as my husband has been traveling so much lately and my baby is away at college. I guess I have more days of depression right now than I have in the past year or so. I try to get out, go for a walk, have lunch with a friend. (I've also found that a good chic-flick and a box of tissues helps for awhile  yeah  ) I go to Bible study every week and teach Sunday school with the three year olds. There is a reason you have small children when you are younger! tehehe!

I try to remember that there are many people that have more issues than me and how lucky I am to have my family, a roof over my head and food in my belly. Thanks for posting this question, it gives one time to reflect and if necessary re-adjust ones mental state, I personally needed it! tongue

Blessings!

Teena

 


 

 

"Be yourself. An original is always worth more than a copy."


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 2/8/2008 10:07 PM (GMT -6)   
I needed it too. As uppity has said before we are always redefining our Normal (whatever that maybe at a given time)...
I got out of the house today, got the topper (memorypad) for my bed and had some lunch, I was very tired afterward but had a hard time getting any sleep (thats unusual). I got home and had a message on the phone  from my neuro scheduling me for an eeg (sp) to rule out seizures or rule them in, he was going to do the sleep clinic also but he feels comfortable with my other doctor doing this. So seems that some answers will def. come. Finally!

I agree that alot of my depression is from alot going on at once. Also im really trying to find that place in my mind that "accepts" the unnacceptable. That finds it's own way of coping/dealing with what i face daily. Not to mention i was such a "fast" person that i could have my entire house cleaned in 20 mintues including shining the floors---boy things change!

In the beginning I did share my sypmtoms alot to my hubbby mut mainly out of sheeer fear and amazement of some of the sensaiton's id never known could exist. I now find myself getting out of bed with maybe some sore skin, crooked elbow etc..and he will call and ask, how are you? i'll say im fine, be careful today!!!!!!!....Im sure he appreciates the emotional rest lol. I do have the one friend i mentioned that is true blue. She didnt care if she didnt know what it meant, she determined herself to find out what it did mean. I myself was braindead to it..i though M stood for muscle lol.

Anyway with the friend that got angry and got moving it was as she decribes it a "click" in her mind that she just decided the medical books would not be right in her case and thus far she's lost many a freind to RSD but she herself keeps on keeping on. She had one kill himself and she really bean moving then. It was as if to say "no matter what the cards' read, no matter how the hands have been played in the past, no matter what your book says, i'm going to keep moving and you'll not stop me. She's in intense pain daily believe me. She allows the tears but backs them with strong statements of faith.

now, if i can only get exercise included. In the beginning that wasn't a prob but the sleep thing soon changed that so hopeuflly ill see some things being resolved soon..


I got a 24hr urine jug just to check my creatine and bun so that i might use chantrix to quit smoking.

I also commented to the nurse that as odd as it sound the vitamin D, has taken away my athriitis pain, She just smiled and said kiera, it will! youll be amazed what vit d can do for a body.


Everyone have a good nite tonite and warm thoughts and prayers to you all


thanks

kiera


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 2/8/2008 9:15:13 PM (GMT-7)

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