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Sunday, September 14, 2008

No use pretending, I need some help

On Wednesday I put up a horrifyingly honest post that found tons of support but I myself could hardly hack its pathetic tone so on Thursday, I took my own advice and bucked up for a few.

On Friday I read Blindbeard's post partially in response to my own and some things started to become clear to me. In regards to having MS she commented, "I will never act like it is better than it is, and I WILL say what I think about it all, whether they want to hear it or not." Up to this point, such an attitude has not been in my nature. True, I goaded the same Blindbeard on to do as she pleased whenever she pleased. I also noted that I am my own best teacher. I noted that at first this illness almost killed me, but still I have never stopped being a poster child for hope. While it still horrifies me, I am going to admit it... I am not coping well these days.

Many of my fellow MSers encouraged me towards considering anti-depressants. I thought to myself, "Wednesday's post must have sounded really depressed for people to think this. I'm just having menstrual symptoms and an existential crisis." I am now forcing myself to admit that I am not coping well at all and this may be more than an existential crisis. I have been depressed many times before but never like this. Now I don't just feel sad, I feel destructive and angry. Actually, I feel like I cannot even uphold the veneer that everything is alright. My ability to control my emotions is wearing thin to the point I even yelled at my mom on the phone this morning for no reason and then proceeded to throw the phone at the wall while screaming "F-----!" loud enough to leave my dog shaking.

I think Blindbeard is right: there is no sense in pretending that living with MS is just fine. At times it is and at other times, it really is not. I also believe my fellow MSers who say the first few years are the hardest. My mom, who of course forgave and understood my outburst said, "You're grieving." She's right. I am grieving. I am grieving the loss of the woman I was. That woman was actually quite imperfect but she put on a really great show. She could do whatever task was laid out for her with seeming ease. She did not make bad social slip ups like I did today and she did a very good job of acting like everything was ok even when it was not. Now the worse I feel physically, mentally, emotionally and spiritually, the harder it becomes to put a good face on things. I really hate to be vulnerable. I don't even like to be touched for the most part and now I find that the shell I have protected myself with for so long has worn very thin in places and even when I want to pretend, I just can't. Sometimes my husband looks at me and asks, "Are you sure you're ok?" Just the question tells me that I'm not hiding my feelings very well anymore. Yesterday a woman I didn't even know said to me, "You look tired." Yeah, I feel that way too.

My mental state is not being helped by my physical one at all. I just plain don't feel good. Every day it's something. I vacilate between a variety of invisible symptoms. I have back and neck aches, skull pain, dizziness, vision difficulties at times and some vertigo. I suspect all the symptoms are vertigo related so that's where my plea for help comes in. Can some other MSers please sound off here on a few questions I have?
1) What antidepressants do you suggest?
2) Is it just part of MS to feel a little ill all the time or is there something I can do?
3) What do you take for skull pain, headaches, dizziness and vertigo? For instance: is there a medication for vertigo that I could ask my doctor about or do I just learn to live with this?
4) Do I consult my neurologist or my general doctor about the physical symptoms?
5) What free mental health services can I get from my local MS Society Chapter?

Thanks in advance for your help and support. The "together" me wants to apologize for all my depressed posts of late but the advice I keep getting is "don't be so hard on yourself, quit apologizing, this is normal" so I'll just be honest, I need some help now.

16 comments:

Joan said...

Lots of these questions I have asked at one time in my MS life, also. I'll start with:
1) the MS Society offers 4 free counseling sessions with a therapist. I would consider starting there.
2) I don't remember which meds you are on, but some medications like the interferon injectables cause problems.
3) I was given dramamine for vertigo.
4) I agree that you are grieving. Having MS is something we push through but never get over.
5) Which doctor do you see more often: the neuro or the general doctor? Which are you more comfortable with to monitor your MS? That's who I would go to for help.

Hang in there!!!

LISA EMRICH said...

You are wise to face this now rather than later.

Depression can itself cause physical pain and a general unwell feeling. I know that you're not using the interferons, so that's not a contributing factor.

I have a long history of struggling with depression and began using Zoloft back in 1993. Two summers ago depression reared it's ugly head bigtime and we decided to increase the dose up to 250mg daily. If that didn't work, we were going to try adding a different drug or switching completely. Anytime I've tried to lower the dosage and taper down, I begin to feel the beast rise up behind me.

I agree that you are grieving which is completely understandable. I already had a great relationship with a counselor before, during, and after MS dx. She helped me tremendously in identifying and working through various emotions.

As far as which doctor to discuss this with, which knows you the best? The neurologist can certainly advise you and provide you with prescriptions. If he feels that you need much more specialized assistance, then he may recommend a psychiatrist who an expert with psychopharmacology.

Primary care doctors are also equipped to help you. Keep in mind that, although you have MS, you are still eligible to experience the wide range of human disorders that effect everybody else too. Sometimes, the neurologist does become a pseudo-primary care physician.

Joan's suggestion of contacting the local MS Society is a good one. I didn't know that they did that. I have not dealt with vertigo, so no advice there.

Talking about it with those who understand is a wonderful step.

Be sure that when you discuss the depression with your doctor that you clearly express how long this has been going on (weeks/months?) and how much it is affecting your daily life. These are very important points.

Hang in there girl, help is available. :)

Xenu said...

I think Blindbeard is right: there is no sense in pretending that living with MS is just fine.

This has always been my point, to everyone out there who somehow thinks that I specifically and/or that we (meaning "people with MS") in general somehow "owe" it to them to pretend that everything is just peachy. It's not. IT'S NOT.

And quite frankly, I think that we should be allowed to express ourselves (be that positive or negative or angsty or joyful, as the mood may be) without feeling like we have to apologize for it and without feeling like we need to "be strong" or "put on a good show" for others.

I applaud you for your honesty. That takes guts.

As for this question of yours:

2) Is it just part of MS to feel a little ill all the time or is there something I can do?

In my personal experience (and I realize that everyone's is different), it is indeed just part of MS to feel at least a little ill all of the time. From what I've seen/felt over the course of the past year, there is not anything that can be done about this. Nothing can make it "better." Instead, I've learned to simply ignore it, push through it, and keep doing as much as I can on any given day.

I accept that constant physical pain, fatigue, and general malaise are now my permanent and unchanging state of existence.

I don't know if any of this is helpful to you, but I hope at least some of it is...

-X.

Xenu said...

Ah, and I should add, about my response to your question #2: the general feeling of malaise I am describing is definitely not due to my medication. It's from the MS itself. I know some other MSers who describe a similar "constant UGH" feeling---never feeling quite right, always feeling somewhat ill, and others who don't experience that and seem to have an easier time of it.

Emms said...

I often don't feel like I have experienced MS enough to make suggestions...but that is one of those things that we (Living! with MSer's) must stop doing...minimizing and neutralizing our own experience.

Let me see if I can answer your questions (I need to remember the questions first...bad short term memory!)

1. I started taking an anti-depressant four months after I was diagnosed (10 months after my initial attack) I too have experienced depression before, but this was different. I was experiencing really bad vertigo, and I wanted to give up. My general practioner doctor put me on Cipralex (an SSRI). It has been great.

2. For vertigo, I regularly take Serc (a beta-histine) medication. I take 24mg/day. For really bad days, I also take Bonamine (also known as Meclizine...the dosage for vertigo is greater than the dose for nausea). Serc is highly prescribed by my neuro.

3. I'm not convinced that MSer's are destined to live in pain and feeling like shit all of the time. I wouldn't make that assumption until I tried all medications...and therefore, would see a neuro as they have more experience with the newest medications that deal with our specific challenges.

I think that grieving is both necessary and natural...and I'm still doing it myself.

I try to tell myself that life is a constant evolution...and MS is now a part of it for me. We can choose to learn, grow and adapt...or choose to not. Not that I am saying it is easy.

Please keep posting!

Emily

Diane J Standiford said...

Well, you want it str8--that is how I'll answer: MS is progressive. That means today may be (looking back) a GOOD day. I'm a pretty positive, happy, well-adjusted person, but yoga master or mostly happy people like me, no matter who you are--MS will sometimes take you down. We all go down sometimes (you read my post today) it is our resolve to get back up that tests us and builds us. HOW we choose to get up is crucial, not that we won't make a choice we later wish we hadn't, but the best choice really feels great. Ok, now what? How do I chose? Asks, Denver. You are off to a good start, give yourself credit for that. You are admitting you need help. You are seeking suggestions, next you take the advice in and let it simmer, then investigate options. Hey! You live in a major city, lots of docs, you have a partner, you have access to the WWW (sites, societies, associations, bloggers, are full of it! LOL Myself included--suggestions.) I sometimes think it is harder now than when I was first dx because of all the options...do I turn right? left? See a shrink? Take this drug or that? She says this but he says that and I feel like my head will EXPLODE! I just want things TO BE LIKE THEY WERE! Yeah...not gonna happen. Right now you seem out of control. Yoga is big on control. I get it, I do. Drugs, they take some control away. I hate drugs. One of the reasons I never smoked pot or drank booze and I am (attack me, not Denver) against anti-depressants except in rare cases and only when accompanied by psycho-therapy. There are so many lessons from Yoga that you already know; I think you just want MS to go away. Unless there cometh a cure or the Pope channels some God thing like that ONE nun in the National Enquirer years ago (or we get a president who pursues science to cure the living) YOU WILL HAVE TO LIVE WITH MS. Now, your symptoms (some or NONE) may not be because of MS! I had to learn that the hard way by getting a huge uterine tumor, followed 5 years later by ovarian cancer, and ALL the symptoms I blamed on MS---NOT. Specialists blamed my tumor symptoms on my LIVER! NOT. Now, to presume that a Dr., ANY Dr. can know what is causing each symptom---NOT. You will be your own best advocate of your body's well-being. Make a list of problems. Keep a diary. I am a big diary keeper, what I ate and when, exercises(how long, what weight size) pain levels (1-10), feelings of sadness or joy (1-10), once you get a year's worth you have a point of comparison and you can begin to experiment. Also, write your feelings about the day, fight w/partner/friend/blogger/student and how did you deal w/those feelings? On the top of each page place an overall # for how good-bad the day was. This gave me some control over my life. LISTS of goals, hopes, plans...just know the will not all be achieved.
I used to always see my primary Dr. first, that Dr. will refer you to the MS Dr., you are a newbie, you will learn which to see as time goes on. Seriously, I thnk most people are going to be depressed after learning they have a chronic, progressive (not always) disease with no cure! You WOULD need a shrink if you were thrilled! Have you always been an upbeat, happy person with no dark memories or worries? NOW--I feel fine physically most days, rarely get a cold, even during my worst MS attacks I "felt fine" my body failed me, but blind didn't hurt, muscle failure didn't hurt, numb didn't hurt (when people step on me or cut me, like one caregiver did while bathing me with her diamond ring, I say,as the blood drips, "Gee, I bet that hurt." LOL)
Vertigo. Either Dr. can give you something for that, definte (probably, see?) MS issue. Now, take heart, I was VERY bad my first5 years after DX, then I was VERY good and had a wonderful time. Parts on me worked better than they EVER had! (All b4 ANY MS drugs.) Oh, I did take prednisone for the blindness, but THAT was the only time IN MY LIFE I felt "unwell" and I swore--never again. You might want to get tested for fibromyalgia, no cure, but caught early you can do much for it. Life goes on, I have peers worse off than I and some who died from AIDS and cancer and suicide...I think of them and thank my lucky stars that I have another day. Does Denver have a children's hospital? Spend day there and you will be grateful you lived past age 5. Yeah? I thought of you today when I watched Coco Chanel with Shirley McClaine on Lifetime. You artist people are a breed apart. I am in awe. Your boss tells you that you are great. Your partner loves you. MS Shmemes! Don't let it make a pathway in your brain to sadness, everytime it starts--SHIFT--to all the great things in your life. It is not easy, but you can do it. The Diane has spoken.
(Now back to writing my own sad thoughts. Oh joy! hahahaahahaha)

Abby said...

Hello, I'm new to this MS thing, but here are a couple of thoughts I have. I have dealt with depression long before I was diagnosed with MS, so I've been on plenty of various anti-depressants. I've seen some info recently about Cymbalta helping with not only depression, but also with MS pain. I am on Cymbalta, and was already on it before the diagnosis. Since I was diagnosed, I was increased to the max dosage, which is 120mg per day.

I think you should seek out a good therapist and see what their recommendation is, but also work with your doctor to see what his/her thoughts are. Between the two, they should be able to help you.

Good luck to you. I hope you find some answers soon. And keep in mind that antidepressants take a while to start working, so give it time.

Take care,
Abby

Jen said...

Hi Nadja--

I'm sorry I'm late to the conversation. Since there is so much good information already, I'll try to be to the point:

I tried Meclizine for vertigo in the past. I find simple Dramamine works better for me.

I visit a social worker 2x a month for grounding. A psychiatrist can prescribe an antidepressant for you and work with you and your counselor/therapist to find the best fit.

It's hard to say whether you will have constant pain and discomfort. I guess it's a matter of what you can live with and what is intolerable and needs medicating. There are muscle relaxers for spasticity. Neurontin, used for neuropathy, helps a host of evils: burning, tingling, and pain.

Of course this is turning into a manifesto.

Lastly, maybe you should consider one of the disease-modifying meds. They can be a bit harsh in the beginning, but I would hate for you to forego them and look back in 10 years with regret.

Hold on tight.

Jen

~ Charlene S Noto said...

I agree with the grieving and the moment when you decide, okay, I need some help here. I'm having a very good streak right now and often it is easy for me to try to convince myself that my MS was a mistake. But...a few short months ago during an outdoor concert, I was watching people walk across the lawns. I became so sad and then angry. I realized that I was actually intensely jealous of them. It hit me like a slap in the face. This loss of our abilities does cause grief and anger and intense sadness. Then, depression is one of the symptoms of MS even aside from the normal sadness of loss. Yes, talk to your doctor. Our center has even hired a psychiatrist and social worker to deal with these issues but often unless you ask, you don't find that out. There is also a good book on the market titled, "MS and Your Feelings" by Allison Shadday, LCSW. A friend of mine gave it to me and I found it very helpful in sorting some things out.

Sorry for the rambling response. I hope it makes some sense.

Shauna said...

DR,
I can't add anything to the above comments as they're all on the money. Give yourself some credit first- you have recognized a problem and are now seeking a solution to it. Kudos to you for that. Some people take years to get to that point.

In Canada, I could get a referral from my family doc to a therapist if she and I felt it was warranted. There are sometimes mental health clinics that offer "free" or reduced rate treatment. Not sure what it's like in the States, though. Check with your family doc and neuro first.

With the combination of MS meds, regular meds, hormones, the alignment of the planets(just kidding) and a whole host of other things, you may need to see a neuropsychiatrist. Someone who's intimately knowledgeable about all the meds.

Good luck!

S.

Blindbeard said...

By the way, I think I love you, but your husband needn't worry, I'm in the midst of a vow of celibacy right now. I have nothing to add except the only thing I learned from 5 days in the looney bin: get the help you need and don't be afraid to ask for it. I wish I hadn't tried to pretend everything was rainbows when it was NOT! I made a vow to myself to never pretend for anyone or anything ever again. If I want to stay in bed that day (or hide under it) I do, honestly it has made all the difference for me to just be ME, with no apologies. Hope this made sense, still sick here. BB

Denver Refashionista said...

Thanks to all of you for your thoughtful responses. You have all really helped and supported me all along the way. Once I can come up for air I am going to find a good therapist and start dealing with all this.

I am also going to talk to my doctor and neurologist about what meds might help me out with my physical symptoms. I am finding this whole thing to be a giant roller coaster ride.

Denver Refashionista said...

Blindbeard, love ya too. You crack me up!

Serina said...

You have a lot of good advice and direction here, so all I'm going to add is that I encourage you to look into anything that will help you feel better. You are strong and you will sort this out, but it isn't going to be easy. MS is such a fluid, everchanging disease.

It really frustrates me at times, and I very much understand the greiving for what used to be, and what I had invisioned my future being, and how I've had to change directions in some unwanted ways.
In any case, know that we believe in you, and as always, you are in my prayers. :)

Denver Refashionista said...

Thanks Serena. And thanks again to everyone else who took so much time to care and comment here. I am still dragging but I am trying to carve out a positive way for myself. I am also really trying not to sweat the small stuff.

Merelyme said...

hey there...

you have gotten so many great suggestions already so...

just want to say...what you are feeling is normal. MS does suck. It isn't easy. Feeling pissed about all this...is part of the grieving. You are entitled to get mad and sad over this. But when you are feeling like you cannot cope...when it becomes overwhelming then...yeah maybe some outside help is good.

I am seeing a therapist myself. This fellow has MS himself so...he gets what I am going through.

Hang in there. You are gonna make it.