Well, it’s an anniversary of sorts for me today. I’ve made it through three whole months of RHS!! I hope the worst is over. This has been the most difficult time of my entire life. Everyone comments on how positive I seem in the face of it all, but they don’t see me on the days I just want to crawl into a corner and whine.

I know I’m so much better now than I was even a month ago, but I’m still so, so tired! The lack of energy seems to be my limiting factor at the moment. I'm fine in the morning and usually OK for part of the afternoon, and I'm beginning to have a life again. But I get so very tired! Yesterday, I was out for about three hours, not doing anything vigorous, just ran a couple of errands and stopped by the library. I did a quick check of the forum, then fell asleep in my big blue chair until supper!

My doctor says it’s mostly that I’m feeling better so I’m doing more now. Yes, I can do a bit more, but I have absolutely no stamina at all. It’s frustrating to feel a little better, but only as long as I don’t do anything! I guess I’ve got some Post-Viral Tiredness going here. That’s the only explanation I can think of to explain why I don’t seem to be improving much on the energy front!

I'm trying to be patient, but even my PT is telling me to do more than I feel I can do. I have split my PT exercises into two groups, and do them on alternate days. If I want to go out in the evening, I have to have complete rest all afternoon. Sigh...

Still no sign of movement on the right side of my face. The droop has been pretty much gone for a few weeks now, but nothing moves. For a week or so I've been feeling as though the cheek muscles were trying to do something in there, but nothing moves. Now, my face gets stiff and achy when I talk or sing for a while but, still, nothing moves!

My eye is closing better, but I still have to gel and tape it at night and use drops during the day. I’m getting really sick of that! My ear itch seems better every week. Maybe some day I’ll be able to throw out that mangled tube of Hydrocortisone 1%? I have no sense of taste yet on the right side of my tongue, but I’m chewing on the left, so I hardly notice that. Loud or high pitched noises hurt my ear, so I carry cotton balls around with me so I can shut the noise out. I think that’s called hyperacusis. I’m still kind of rocky on my feet. I have to take corners slowly, and I’m still very careful outside the house.

I know it takes time, lots of time. It's just that sometimes I get so tired of waiting to be back to normall! There are days I want that so badly I can taste it! But I have decided I'm tired of waiting, and have started to make a life the way I am. Any further healing will be a welcome bonus, but I'm not going to sit around waiting for it any longer. I'm going full steam ahead (at least until about 8 pm when I run out of steam!

My balance therapist and I played a new test/game today. She put me back in the booth where we had done the balance evaluation. This time, no parachute harness, and she activated a monitor screen on the back wall. The game she brought up on the screen had 6 squares arranged in a circle, with a little stick man in the center of the circle. Sensors in the floor I was standing on made the man move as I leaned from side to side and forward and back. As one of the squares lit up for about, I think, 5-6 seconds, I had to move the little man to the center of that square before the light went out, then another square would light up. Easy, huh? Well, not too hard. But... the booth has walls and a floor that move!

She kept reprogramming the game to set it at different levels of movement for walls and/or floor. So as I gained the tiniest bit of mastery over one setting, she'd make it harder!!! The hardest was the right heel. I just could not get the little man to get into that lower right square for the longest time! By the end of my session, which seemed much shorter than usual, I had actually gotten pretty good at it. That is, except for the settings at which I couldn't even stand up!! It was kind of fun... except when I was bumping into the walls.

I wonder what weird torture she is staying up nights to plan for my next session? As far as improvement goes, the testing showed that my vestibular system had gone from barely detectable input to almost 50% of average input in 5 weeks. In day-to-day practice, the change is not that dramatic. And it's hard to tell how much is attributable to therapy, how much to healing, and how much to just plain adaptation and increased confidence!

My dancing has improved significantly, but when I'm tired I still bump into doorways. Large open spaces, like mall parking lots, can still give me a little frisson of dislocation, although nothing like it was 6 weeks ago. And some of the exercises I have been trying to do for weeks are still impossible! (Like standing on a foam mat with my feet close together and closing my eyes. Half a second and woah, Nellie, over I go!)

I have only one more session of PT covered by my insurance. This should be plenty, since the therapist has given me all the exercises in her book and made up a few to boot! I will miss playing in the "phone booth" though! I guess only time will tell just how helpful it all has been in the long run!

Last night I was so, so tired. After doing balance therapy in the afternoon, I actually square danced two songs worth at dance class! I got home and just fell into bed. I still feel worn out today.

Last week I ordered about $100 worth of beading supplies. It arrived today… Hooray! This huge expenditure will assure that I, with my half a drop of Scottish blood, will actually begin beading again! I had just finished drawing up plans for a jeweled collar, a piece of wearable art completely embroidered in seed beads, cabochons, crystals, and pearls when the RHS hit. So I never even got to order the materials! Then my vision was too two dimensional to bother. Well, as a declaration of my intent to get on with my life, I just spent a passle of cash! If I don't pick up a needle as soon as possible, Hubby will have my carcass on a spit!!!

The good news is that my bead order arrived. The not so good news is that I pulled out the collar design I had worked up before RHS hit, and it looked awful! Too ordered, too tame. My guess is it's me... I have changed! So-o-o... I pulled out the quad paper pad and started redesigning the collar.

The theme was intended to be "Peace" but I have learned that anyone can be peaceful when nothing is wrong. The piece would have nothing important to say, thus would not be art! Now that I have been through what I hope is the worst of my RHS, I have learned that real peace is the kind that stays with you through even the most turbulent times. The new design will attempt to communicate that. It is coming out much more “stormy,” with a suggestion of waves crashing against a still stone, while the stone stands firm and does not move. In my life, the steady rock is Jesus Christ. Without Him, this illness would have all but destroyed me. I know, if I had done the collar before the RHS, I would be dissatisfied with it now. So I guess something good is coming out of this after all!

The high temperature today at 1:30 pm was 10F (that's about -10C), with a brisk wind... say about -20F to -30F windchill factor. I stayed home from church today; it’s just too bitter out there for me right now! In a nearby city there have been only 3 days in January when the high temperature got above freezing temps (32F, zero C), and then only a couple of degrees above, and only for a very short time in the middle of the day. That city is on the ocean, so we were probably colder than that! This kind of cold makes my face ache so much, even with a scarf around it, that I’m just staying home as much as possible.