Losing Heart

[loopey]

I have been around for awhile...dx November 2012. Though my MRI's since then have been "stable" I seem to be progressing. I use a cane now and intermittently a catheter.

My balance is getting worse and hasn't improved for several weeks. I have horrible hot flashes (worse than the ones with menopause). My feet and tongue burn. I can't see well, I can't sleep. I cry too, too often. I am ALWAYS dizzy.

I used to be such an optimist my friends laughed at my rose colored glasses. I can't seem to get it together now. I feel ashamed of my weakness and feel hopeless a lot of the time. How can I get my joy back?

[CaroleK]

Hi Loopey: I'm sorry to hear of all your troubles. Are you on any meds? Do they help at all? I know it is hard to keep positive but please try to if you can. I'm hoping things look up for you soon.

[krystine]

Hi Loopey.

I am sorry to hear you are having such a rough time. Have you thought about looking into seeing a counselor to help you through this?

I only say that because of personal experience. I have been diagnosed for 14 years and 2 years ago things started to progress more rapidly. I started having major anxiety and all of my symptoms flared up. I started to see a counselor and realized I had not dealt with the emotional end of being diagnosed. For me, once I started to deal with that stuff, my symptoms started to lessen.

Just a thought. I hope you get some relief soon.

Krystine

[AnneLouise]

Ms sucks. I ask myself that question often. I don't know what to say, just don't fold. I ask myself every morning what do I love? My husband, my cat,my home, tootsie pops...Find something. I think the more it's done, the longer the list becomes. And I think of my list throughout the day.

Maybe you can't see well, but you could listen to music or books on tape.

Also, I know there are some medications that help with dizziness. They might help you feel better.

Joy is there. You're gonna have to dig for it.

[Mamabug]

Maybe I am more of an optimist than a pessimist. My philosophy tends to be: everybody has their stuff. MS is just my stuff.

And, it could be worse. If I had to trade my stuff for somebody else's stuff, I don't think I'd want to do it, even if it's not worse than mine. Because I know mine. And I know how to deal with it. And I can deal with it. And I take a little pride in that.

Having said all of that, I absolutely realize that it sounds trite. A little Bobby McFerrin-ish.

So,

• talk with your doctors about MS management (progression) and symptom management.
• Consider whether a counselor and / or anti depressant would be helpful.
• Do some things that are fun with ppl you care about.
• Do some things that are fun by yourself (for example, listening to music, or books on tape, as suggested by another poster).
• Exercise. Either with others (join Curves or a gym or a team sport at a local rec center), or by yourself (go on walks or bike rides, etc.).
• Do something for others. Volunteer in your church or community, even once a week at something you enjoy, or, at least, don't hate.
• And, absolutely, don't sit at home all day and do nothing. I don't know if that's what's happening. I only know that, when I went on disability and quit working, I would've been at high risk for depression if I had not created a schedule for myself that gets me out of the house daily.

And ...
Everybody has their stuff.
And it could be worse.

~ Faith

[poppydarling]

I have been around for awhile...dx November 2012. Though my MRI's since then have been "stable" I seem to be progressing...How can I get my joy back?

On top of everything else, you're requiring yourself to find joy? I kid a bit, because I think most of us with MS are talented overachievers with superman/woman complexes!

What if you didn't seek "joy" or "happiness" right now, but mindfulness, an awareness of where you are at this point in your life? Practicing acceptance for where I am has eased so much of my emotional pain.

The book Mindfulness for Beginners by Jon Kabat-Zinn helps ground me when I get in the weeds--short chapters and comes with a CD to listen to, if you're too exhausted or having a hard time reading. He has written another book as well on mindfulness, healing and chronic illness.

I think the other suggestions here are great, too. If you feel shame about any stage of this journey, I think counseling is definitely in order. Shame has no place in good self-care.

[loopey]

Thank You!

Thank you all for your kind words. I particularity related to the comment about not trying to find joy; if it comes great but for now I think I will just try some of the other advice and hope that my coping skills improve.

Thank you all with love.

[mjan]

Well let me first say, I am sorry for all you are going through. But you came to us and admitted what has been going on.. I feel your spirit wants to break free no matter what MS has to say!

You could have signs of depression. Ironically, my MS neuro put me on Effexor for pain. Its an older anti depressant and I have the generic. Thought it couldn't help but to prevent depression while helping take the edge off of pain.

BUT.. I wanted to tell you I went through Vestibular therapy but a PT therapist especially trained to do this kind of treatment. It helped my balance and corrected my long time dizziness with movement of my eyes.

So please seek out your neuro, ask about anti depressants and also about that Vestibular therapy.

Hugs, Jan

[Thinkimjob]

No, "joy" is a bit too much. Aim for "it could be worse" or "I can cope with this" or "I am really pretty brave, yeah, me!",

I have a lot of trouble finding joy, or even mild pleasure. (No, not taking Prozac, much to doctor's horror.)
The weird thing is I can see the humour in all of this. Dark, dark humour, albeit.
It really does suck.

And Poppy is right. Meditation is good. There's a free podcast of "mindfulness" meditation on itunes. Yes, bit Buddhist, but very, very soothing. In and out. Out and in. It does work.at the very least, it sends you to sleep.