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Taking it in stride

Started by ruby52, February 06, 2009, 06:42:55 AM

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ruby52

February 06, 2009, 06:42:55 AM
Not enough restful sleep several days in a row this last week.If I did get to sleep I woke up wide awake at 2.I had hot flashes going on and backache.Wed. I was irritable and had a hair appt. the girl's nonstop talking drove me crazy so I told her cut it and leave the rest go.Yesterday I got winded if I went from one room or task to another.My legs ached and I wanted to be left in misery.Today I'm fine,what the heck?Long drive next week for vacation and I'm trying to pace myself  to be able to manage and enjoy the trip.How on earth can you explain days that go like that?How can anyone relate to symptoms that come and go like that?I'm trying to take in stride but it makes you so apprehensive about having any plans at all.Normal life Drs. say what is that for us anyway.It's disheartening and makes me feel very cynical.That's my vent for the day time to move on I guess.
                                                                                   Ruby

Scottietottie

#1
February 06, 2009, 09:06:18 AM
Hi Ruby  :)

I think days like that are par for the course - and no - they're not easy to explain. I think I probably gave my kids quite a rough ride when they were growing up because of mood swings that came with no rhyme nor reason and also a label of 'hypochondriac' at that time.

I'm afraid I don't have any helpful suggestions. I have sleep problems too. All I can say is that you're not alone and that we're here to vent to.

I hope you've paced yourself for a good vacation!

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

Katybarstool

#2
February 06, 2009, 01:25:06 PM
hi Ruby

I know what you mean about not being able to plan anything. I try to plan as little as possible now, but if I am going anywhere, I try to 'bank' as much energy as I can.

My body has two speeds at the moment - slow and stop. Today I had to use the elevator to go one floor to the ladies room. I never thought I would see the day when I could't walk down one flight of steps, but OI had to give in today and do it.

Do yu have to do the driving, or could you be the passenger and snooze a little?

Kathyx

   

ktfabian

#3
February 06, 2009, 06:00:00 PM
Hi Ruby-

Hi Ruby-
Sorry to hear you've had such a rough week.

I've also learned over the years that it's hard to plan much because you never know if you're going to be able to follow through.  But when there's something I really want to do, I try to be careful what I plan in the days following up to the big event so I can be as rested as possible, and I also make sure I have a contingency plan just in case I need to change my plans a bit mid stride.

I was just explaining on another post that I like to drive about 3 hours from home to go scrapbooking with some friends in the Philadelphia area. I had one trip where I was halfway home and knew I wasn't going to be able to drive the rest of the way and ended up spending the night in a hotel.  Now, I still make my trips, maybe not quite as often, but when I go, I always pack a little overnight bag with my meds and something to sleep in so that I can stay with a friend if needed. I also budget a hotel stay just in case. That way, I can still have my fun without worrying about getting stuck somewhere if I poop out.

Just a thought, but you wouldn't happen to be entering menopause as well as having Sjs?  For me, menopause just made things that much more intense for awhile, especially the mood swings, the hot flashes and the irritability.  My oldest son actually figured out my cycle and would stay away when he knew I was getting to the nastier part of the month!

I hope things settle down for you and that you have a nice, relaxing vacation,
Tracy

________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

ruby52

#4
February 07, 2009, 05:27:23 AM
No Tracy,been through menopause yrs. ago thankgoodness.I feel better.It just gets to me when these random days appear for no reason.I always panic and worry about how long they'll last.Does anyone else do this?I might have several decent days and out of the blue I'm knocked flat with random crazy symptoms.Alarm bells go off in my head imagining a major flare is coming and I can't do anything to stop it.I get short of breath just crossing the room and feel so fatigued i could drop just from standing up.I'll just conserve energy even though I feel better and try not to stress about it.Thanks for your kindness.Does everyone get this or just me that's what is hard for me to comprehend.I'm not driving,who knows where we would end up.I can't sleep though I feel the need to keep an eagle eye on hubby's driving.Like he listens to me anyway lol.
                                                                                                              Ruby
                                                                                         

Dolly Dimples

#5
February 07, 2009, 01:18:57 PM
   Ruby, your certainly not alone on this one.. I hate having to plan anything too.. I panic if I get a wedding invite or something like that, holidays are a no no now! as I can't travel by car or public transport, or I worry that the venue might have air conditioning,   or will it be too hot or cool,    one's brain goes into overdrive till exhausted! I know we have family wedding this coming June, and I'm already trying to think of excuse not to go..
    These complaints can turn us into hermits, eh?   Hope you get over your worries and manage to grab the opportunity.
       
                                                               Dolly

lynnmarie219

#6
February 09, 2009, 06:38:27 AM
Hi Ruby,

Nope your not alone! And yes it is hard to plan anything when you don't know how you feel from one day to the next...or sometimes one hour to the next! I have no advice....except to be aware of this as plan for the unexpected! I know thats not what you want to hear, but I really don't have any sure fire answers either... :).

Try to hang in there and I wish you many more good days than bad ones.....I guess we are all in this together, huh?  ;)

ruby52

#7
February 09, 2009, 07:11:45 AM
I just need to get over myself and stop obsessing about what's going to happen.Doom and gloom are not good thoughts for a holiday.Taking care of myself would be easy but taking 94yr. FIL is to much this yr.I should have put my foot down with my hubby and had him in Respite for the week.I'm driving myself batty trying to for see obsticles and prevent them from happening before I get to visit my daughter,gran-daughter,grandson,and two sisters all in a weekend.I have a lot of things to be thankful for I just don't understand why I can't just go with the flow this yr.Once I get there maybe I'll relax and enjoy my family.
                                                                  Ruby
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