359574 tn?1328360424

Pity Party

Hi, everyone.  Now that I've had a couple of days to bask in thankfulness, here is what I am sad about.

When I saw the MS neuro in August, I told her I had to quit my singing, and that I was still passing out at work on a regular basis.  I cried a little.  She referred me to a new sleep doctor, and I had tests for narcolepsy.  It turns out I don't have that, but idiopathic hypersomnolence.  Same treatment.  I am now on Nuvigil, and it does keep me awake during the day.  I also have worsening PLMD that messes with the quality of my sleep.  My CPAP is treating the sleep apnea perfectly.  Zero apneas/hypopneas during my latest overnight study.  The multiple sleep latency test (MSLT) performed the next day shows I fell asleep really fast in all 5 of my 20-minute naps, but I only entered REM during one of them, hence not narcolepsy, but proven excessive daytime sleepiness.

Is worsening fatigue a relapse?  Of course not.

The other referral my MS neuro made was to a headache specialist in the same university medical center department.  I got approval for two round of botox for my allegedly migrainous eye pain.  All I got out of the deal was a crooked eyebrow for a few months, so I will skip round two.  So I still don't enjoy reading like I used to.  My eyes are just terribly fatigued when I get home from work.

Even though I am now able to stay awake, I don't dare return to rehearsals, because staying out until midnight just isn't in the cards for me any more.  And there's still the stamina issue.  Furthermore, I have become wary of night driving, so I'm not willing to go out alone in the evenings to find other activities, unless I can come up with something that fits the bus schedule.  I still wouldn't dare try to drive alone to Joplin to see the kids and granddaughter by myself, having dozed off on the way home from her birth.

I quit going to Yoga because classes are just too hard.  I was paying to sit on my mat half the time and watch other people.  I also passed gas twice in my last class, and I am too humiliated to return.  I have several nice DVDs, but I can't hold poses I used to do just a few months ago.  I am also afraid of making my brain aneurysm worse trying to do poses like down dog that put pressure on the head.  Yes, I know these are just excuses, and I will get back to using my DVDs.

My urinary incontinence is pretty stable, but still a problem.  Lately it seems that I have urgency problems with BMs too.  And gas (see previous paragraph.)

I am doing aerobic exercise on my Gazelle daily, but I'm still gaining weight.  I get in the recommended 150 minutes a week.  I never feel like doing any strength training.

I went to a chiropractor for a while hoping to make my stiff legs and back feel better.  That only worked for the day of, then right back to usual.  I had a standing agreement with the doctor that she was not to twist my head, since I feel extremely protective of my vertebral arteries, what with having the annie and everything.  She kept forgetting, so I decided to stop going before she accidentally kills me.  Loss of trust for a healthcare provider is just sad.

Hubby and I fell out of the habit of going to church a couple of years ago, and I would like to return, but he doesn't want to.  The one we went to did not have much of a fellowship component to it, and we never really felt a part of it.  He doesn't want to try a new one, either.

I get up, exercise, go to work, come home, watch a lot of TV and waste time on facebook, and go to bed.  Every other month I go to a brain aneurysm support group meeting, but that's not very social, and most of them are dealing with post-rupture and post-surgical issues.  And it's far from home and dark when it ends at this time of year.

Hubby has his model railroad hobby, and he goes to meetings and to friends' houses to run their trains.  When he's home, he spends a lot of time in his man cave working on his models.  He has invited me to come along to meetings and shows with him, but it's just not my thing.  That would be like me taking him to chorus rehearsals.

All I have right now is work.  I enjoy my job, but I am frustrated that I will never be able to work as fast as my peers, and I am disappointing my bosses in that one area.  Otherwise, they are pleased with my work, and I got an excellent rating at my recent review.  I would have thought that not losing half an hour or so during each workday to sleep would help, but my productivity hasn't really improved since I got medicated.

I'm about to turn 59 and I have the life of a stereotypical woman in her 70's or 80's.  The flatulent old lady who's afraid to drive at night, has awful frown lines and eye bags, who depends on her husband for everything, can't be far from a restroom, and has no social life.  My diseases (transverse myelitis, brain aneurysm, sleep disorders) are invisible.  I was a performer in an elite group with wonderful friends just a year ago

I asked Hubby yesterday when he was going to get on the ball about exercising and protecting his health, because I'll be darned if I'm going to let him go first and leave me alone, friendless, dependent on public transportation, and far from my kids.  He did not respond.

I am looking for something to fill the void, but so far nothing that meets my bedtime and geographical constraints has come to light.  I'll keep looking.  Thanks for the ears and shoulders.

7 Responses
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1831849 tn?1383228392
Hiya :-)
It sure seems like life has given you more than your fair share of lemons. While no on can predict the future, ours seems to come with some "interesting" possibilities.

When I start thinking about what might be, I wander into some dark alleys. So I try not to focus on what I might not be able to do tomorrow, but on what I can do today.

Sorry that things don't seem to be going your way lately. Feel free to come and whine any time :-)

Helpful - 0
5160872 tn?1385248794
Wow! You have a lot going on. First, let me say that it takes a lot of effort to get up, exercise and then go to work! That is awesome.

For me church and God is a big part of my life. If I didn't have a relationship with God I would feel hopeless. He is my best friend, savior, and the one thing in my life that stays the same. My church family encourages me and it is good to fellowship with other believers.

Churches are not perfect, because people are not perfect. I pray you are able to find a wonderful church. You sound like a very sweet person, with a lot on her plate. You still have a lot going for you! Don't worry about your peers. You are doing the best you can and that is what is important!

Helpful - 0
667078 tn?1316000935
Sorry for all your issues.

Helpful - 0
751951 tn?1406632863
Yeah, what they said!  Hey, I know I'm no substitute for a real genuine church, what with being out here in cyberspace, & all that.  Nevertheless, please feel free to send messages to me any time you'd like.  I'll do my best.  This goes for anyone, really.

Helpful - 0
695104 tn?1442193588
Me, again, the gal with Lupus and IC who's husband has MS. I can relate to much of your post. Only I can't work full time any more...My husband still does, even with the toll MS is taking on him lately.
Along with my Lupus and IC meds, I am on medicine for depression. I also have seen a wonderful therapist in the past..it took me a couple of diff tries before finding the right one, but it was worth it.
I was really down for a while. I rediscovered quilting. Hadn't done any of it since I was a young girl in the early 70's visiting my Grandma. It really has been a lifesaver for me. There is a local group I attend, when I can. There are several online groups that also have interactive activities, as in one person makes something and swaps it with another..I have met many great people, and it gives me something I feel is purposeful to do. Maybe there is a new or past hobby waiting for you to discover and enjoy?..I often quilt or embroider at night, when insomnia is bad...and online groups also don't have the typical daytime hours..easier to find a good fit for yourself.
I hope things get better for you!
I am also the gal who posted looking for ideas/help regarding the fecal incontinence my hubby has been experiencing..we can so relate to you on that!
Helpful - 0
359574 tn?1328360424
Thank you.  A couple of days at work has actually perked me up.  Our office is doing nice things for seniors and for a family we have adopted.  I accomplished more than usual so far this week.  I have decided to give the botox a second try since common wisdom says it's more effective the second time around.  I have appointments with my MS neuro and the neurosurgeon in February to monitor my conditions.  I'm reducing the miralax that I have been taking daily for a couple of years to see if I have less urgency without going back to totally blocked.  I got on the scale this morning, and the number is lower than last time.  Not by much, but lower.
Helpful - 0
695104 tn?1442193588
Good to hear you're doing better!
Helpful - 0
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