Long haul/Avoid discouragement

Specific Illnesses & Conditions VM/MAV
1

Personally, I’m dealing with a flare up, and I’m finding it discouraging. It’s the uncertainty, the trying new meds, the fact that I’ve been here before and somehow didn’t think I’d have to go back.

Yet, and this may a function of who posts, it seems like the course of MAV and its various other issues is one of remissions and relapses. Migraine disease in general is the same way, so why shouldn’t MAV follow suit.

This is just an observation, along with the previous question: “Are there any success stories?”

I think it was my first neuro-otologist who remarked that the symptoms become less tolerable as they persist. Or, in my case, when they come back.

I guess the only way to deal with the frustration/discouragement of taking a turn for the worse, is some sort of acceptance. I know that other chronic conditions wax and wane, it’s just that dizziness intrudes on my life so much that it’s hard to ignore.

Someone on another board uses this as their signature:The only balance that matters is within. Accept the loss, live with it and not against it, and happiness will find you.

When asked about it, the person said that it didn’t preclude the hope on the horizon of getting better. I’m trying to be so accepting, but it’s tough.

Kira

2

Kira,

When I’m convinced that there are no success stories, i remind myself that Hopkins can’t actually claim significantly helping thousands of patients with this illness without there being something to base it on. Even my neuro-oto, who I don’t think as much of, has had to have had some luck to be so confident regarding Zoloft.

I know that you know this, but i’ll repeat it - it’s got to be true that there are people walking around, back to their lives, not visiting this board anymore. When I first joined, I read a series of posts by “thornapple.” I watched as she titrated up on Topamax, complaining the entire time, and even though her dizziness was gone, the SEs were so bad, she angrily decided to taper down. When she got down to 20 mg, she noticed that her dizziness was still gone, and so were the SEs. She decided to stay at 20 mg - “why take more?” Then I noticed she was absent for quite awhile, only to make one last visit - apologized for not having logged on in such a long time, but she was so busy getting on with her life. I wish more would come back and give us updates. If I ever get well - I promise I will keep you all updated.

I’m not sure i’ll be as lucky as thornapple. And you have suffered for such a long, long time, i’m not surprised you’re discouraged (I’d actually be pretty depressed and freaky) over a relapse.

I continue to slowly learn to accept my extremely limited life, I’m homebound, and when i fall off-center, I remind myself of my sister’s fatal car accident at 25, how lucky I am that by nature I’m introverted and not easily bored or lonely. I also remind myself once in awhile of how people have survived horrendous situations:

Digging a trench in freezing weather, Viktor Frankl thought about his wife:

*A thought crossed my mind: I didn’t even know if she were still alive. I knew only one thing: Love goes very far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is still alive at all, ceases somehow to be of importance. I did not know whether my wife was alive . . . but at that moment it ceased to matter. There was no need for me to know; nothing could touch the strength of my love, my thoughts, and the image of my beloved. *

The message to me being, the image of his wife, dead or alive, transported him to his innermost self and “nothing could touch” that place. With or without MAV, this is a crazy world and that innermost place is the only place we will ever find peace - even in the midst of hell.

On the other hand, I can’t help but worry intermittently about the future, what if my husband dies before me, how will my illness progress, what if I develop a tolerance to Klonopin. I used to feel lucky that i had longievity genes. I no longer want to live to be 91 like my Dad.

These worries topple me off-center but what I believe in my heart of hearts is that the world is as it is meant to be. Einstein said “God does not play dice with the universe.” My husband can take a break from it, go shopping, visiting, even get angry and storm out. He said to me not long ago that he wasn’t sure he could ever go through again what we went through last summer. I said, out loud, “me neither,” but thought to myself, “I have no choice.” There’s no getting away for us. This is our cross to bear. So I must try to bear it the best I can. (Gosh I need to keep reminding myself of that!)

I feel for you, Kira, and for right now, all I can do is hope we all get a good night’s sleep.

Julie

3

Kira & Julie,
I went to watch my daughter play soccer today, and thought at one point that I’d have to lie on the ground as I was overcome with nausea through watching these figures darting around the soccer field, how sad is that…I greeted friends, chatted and smiled, all the while feeling so desolately saddened about my newfound life, not a sole ever imagining how awful I actually felt which only made me feel so, so lonely about my little secret and most embarrassing life (why am I embarrassed??? but I am greatly). I joined this forum just after Julie and have been suffering for just over two hideous years. I can absolutely say that I’ve improved and never also wish to regress to such awful depths of illness, but like you mentioned Kira, I seem to take two steps forwards and sometimes one back, sometimes three! I am forming the opinion through my own experiences too, that MAV has remissions and relapses and I also agree completely that during these relapses that I am less able to cope, I think because every ounce of my willpower has been used trying to feel that there will be a positive outcome to this condition and my convictions are continually tested to a point where I become depressed that there is no future beyond where I am just now.
Julie, when you reach that wonderful point of wellness, please, please come back to this forum and let everyone rejoice in your good health, I’d love that, we all need to renew our faith in recovery. And Kira…you’ve been there, over the hill and felt better, I wish you so much wellbeing, it’s just gotta come your way soon!! My neuro is of the opinion that MAV is about remission and relapses too, but he always tells me that in his opinion, he expects a full or very close to full recovery for me and I have to hold onto that thought. I line my pills up every night before bed (and of course those for the morning!!) and sometimes just sit there and have a quiet cry. Tomorrow has got to be better…
Sorry all for the depressing thoughts today :oops:
regards to all and wishing everyone speedy recoveries and future happiness, Judy

4

Julie and Judy,
Thank you for such beautiful responses. Julie–unfortunately I’m in the depressed and freaky stage right now, although I survived an outing to the symphony last night.
The limitations are SO frustrating.
What happens to me is that I get scared, lay around, and then it gets worse because I’m not habituating myself. I’m due to resume work tomorrow, and it has me terrified. But, I see my ENT first, and I’m really trying to let myself off the hook if I’m not up for it.
I was thinking, if I broke my leg, and was in crutches, I’d feel no guilt about taking the time to heal. Just because no one can see the dizziness doesn’t make it real.
Julie, wonderful quotes. Judy–I remember lying on the floor after a minor sinus surgery, and begging for someone to car pool my daughter, and not realizing that it was vertigo.
I’m going to try and take the negative emotions away from the relapse (very hard) and realize that remission is always a possibility–and has been my reality.
It is a couple of steps forward, and a couple of steps back.
I also realize that zoloft can cause anxiety at first, which may be contributing to my lack of “rolling with the punches.” When Larry Newman emailed me that he uses it, quite successfully at 12.5 mg/day, it was reassuring to know that it’s okay to do a a gentle upward titration on the med.
There’s a psychological term: catatrophizing, where you worry about the worst case scenario. If you challenge that, you find that even if it materializes, there are ways to handle it.
A quote from Winston Churchill: “When I look back on all these worries, I remember the story of the old man who said on his deathbed that he had had a lot of trouble in his life, most of which had never happened”
Kira

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I LOVE that Churchill quote!! :slight_smile: Great way to start my day - thanks and have a good one!

Julie

6

P.S.

Kira, I’m so glad you got to go to the symphony. Music is one of the most effective ways for me to find my center. I love to cook. So i put on Hillary Hahn playing Bach, light a candle, chop vegetables and my symptoms disappear. There is beauty in the world and it does touch me, even in the midst of this nightmare.

Judy, please, do tell :slight_smile:

Julie

7

Julie and Judy,
I actually stopped cooking with this. All the nausea at first, and then I just couldn’t. But for years, when my girls were at home, I was the primary cook. My husband has somewhat reluctantly picked up the kitchen duties.
Julie,I can just imagine you cooking to beautiful music–it sounds so peaceful and soothing.

I just re-read Judy’s post, and wanted to comment that the embarrassment is a HUGE issue, as is the lonely secret and the desire never to let anyone else know how badly you’re feeling. It’s a shameful weakness that has to be hidden. Jen wrote back in October “half the time at a dinner party or get togther I’m spend most of my time pretending to cope while inside i’m slowly fading away.
jen”

I wish us all good weeks and that we check in as we get better. Good music and good food. No shame.

Kira

8

Hi Kira and Julie,
Night time wreaks havoc with your emotions doesn’t it?? It’s morning in Oz now and ‘there springs eternal optimism’! Julie, simple things are what I appreciate mostly these days…the simple pleasure and ritual of making a cup of tea and resting whilst sipping slowly…(never new what slow was before this). That applies to my daily routine too, not too many tasks allocated for me to complete each day and a great deal more time allowed for preparation of the evening meal to make it possible. Quiet…that’s another ‘biggie’ for me, I really appreciate spending ‘quiet-time’ with myself to regroup and prepare for all the activity/stimuli to come. I have not worked in 2 years and now have indulged myself with the prospect of not returning to the hirdygirdy of working life and taking lots of time out for ‘me’ time. Allowing myself time to recover unhurried is an uplifting feeling too (I realise not everyone is in a position to do this). Kira, I enjoy a more solitary life these days (complete opposite to the ‘before-me’), I think because I don’t need to feel embarrassed about having to keep up the pretense/lie with friends, much less pressure. I think I’m trying to make life changes to accommodate my condition but also to get some degree of enjoyment from my lot too. We all deserve a bit of sunshine! :stuck_out_tongue:
So far today, I’m feeling OK!
fond thoughts and regards to all, Judy