Sleep: Is it a dream?

The last two days I have had almost no sleep at all. Tuesday night my cold kept me up - sneezing, coughing, generally feeling miserable. Last night my right leg went into almost-regular spasms. The top of the thigh would jerk into a painful spasm so frequently I could not get settled enough to fall asleep. I feel seriously deprived of sleep.

Yesterday afternoon I met with a friend who wanted to hear more about my knee surgery experience because she sees the same thing in her future. I was happy to talk to her. I am almost always glad for an ear. In the course of our long conversation the Restless Leg Syndrome (RLS) came up. She has it too, and has had success with a prescription drug  - Requip. Requip is used for Parkinson's symptoms as well as RLS. It has a number of side effects, the most dangerous of which appears to be the potential for falling asleep suddenly (like when driving). My friend said she takes it only at night, which makes sense, so this may not be an issue if I were to use it.  I am going to make an appointment with my regular doc to see about trying Requip.  It would be wonderful if I had this issue somewhat resolved before I go into the hospital again.

Last Stage

I met with the surgeon last Wednesday. He saw that my knee is still not straight and he said it probably will be eventually and that he has had other patients who do fine without having it completely straight. I asked him for a prescription for massage, which he gave me, but said insurance may not cover it. True enough.  I asked about the next surgery and he said "any time". I said how about early October and he said he'd set it up. I should get calls from Nancy soon, with a date and instructions.

So this means I am on my own right now. No therapy, no future doc visits on this leg. I am continuing with work at the gym and at home, interrupted by trips (right now I am in Las Vegas). It's an odd feeling, free really, and I don't mind it.

Some Good, Some Not so Good

It seems like so much time has passed since last I wrote in here. I think that's because I have been busy doing other things, things unrelated to my body. These activities have worn me out and made me feel like not writing. But worse than that, which I'll explain in a minute.

I have been traveling a lot for events that are hosted by a foundation I belong to (and am vice-president of). I have had to make car trips to Los Angeles and back three times within a short period of time. On the good side, it seems like my knee handles the trips rather well, meaning I feel okay when I get to my destination, not too much stiffness or pain in that knee. And one night, Friday night a week ago,  I slept without drugs and went to sleep quickly. I woke later and was up a bit but overall it was n amazing night, almost like old times. The next two nights weren't as good but still weren't the worst either, and I was still without nighttime drugs.

Lately it's all gone to crap, though. The restless-leg syndrome has accelerated, is affecting both knees, sometimes for hours. And now my back hurts and I feel worse today than I have in a long time. I think all the driving is adding up to the need for possible chiropractic intervention.

But before I go that way I will continue with massage, which I started a little over two weeks ago. I have had two massages using mainly "trigger point" massage, working on those adhesions. I feel some hope for this type massage in helping both with the restless legs and with the straightening of the surgical leg.

I may be at the end of my time with physical therapy. The prescription ran out last Wednesday, two days ago. I see the surgeon again next Wed and it's possible he will not renew the prescription. Mainly because my knee is not straight and in particular is not any straighter than it was six weeks ago. In spite of all of my and Paul's efforts. It's been discouraging but I still think it's possible that I will be able to get it straighter over a longer stretch of time, like one or two years, or even more. If there is no more prescription I am going to be rather more on my own, which will be a little sad. I hope that if I no longer get to see Paul that he will take a little time to talke to Clara, my gym trainer, about where to go from here. I want to keep up with whatever I can.

A Good Day

After several days of feeling both emotionally and physically unwell, I am feeling much better today. The pain in my knees is minimal and I felt enough energy to stop at a hardware store for various items after going to the gym. At home I worked on a graphic design that I have not had the energy to deal with. Perhaps this is a kind of reward for going through so much shit.

So what else might I do? I might make a fleece blanket for a little foster grandson. I might do more organizing of sewing materials. I might make me lunch and veg out a while!

That Restless Leg Thing

I have mentioned getting that "restless leg" feeling frequently, particularly in my "surgical leg". Lately I've been feeling it in both legs, sometimes more in the right than in the left. Today it's been bothering me almost nonstop since I got home from physical therapy at about two.

I occasionally take a look online.  To me, this kind of feeling is not a "medical condition" so much as a discomfort for which there should be some simple solution. I used to think it happened when I had not exercised enough, because stretching and moving around does relieve it. However, I am exercising plenty now and I can't, obviously, get any sleep if I am getting up and wandering around to relieve this symptom.

There does not seem to be a single cause for "restless leg syndrome". Sometimes it is caused by a lack of iron, so today I bought an iron supplement (even though I am no supplement fan). There are other drugs developed for this condition but I am not willing to go there yet. I can't help but think these are neurological drugs that, in the long run, will do more harm than good. Also, they don't specifically target this condition, which is why they don't work for everyone. I hate taking drugs that I may have to take all my life. I'd rather find a better solution to end the situation.

I would love to hear from others who might have found a good solution.

The Horrible, Terrible, Very Bad Night

Last night I went out to dinner with a group, came home and did not get the dynasplint on until about 8:30. I went to bed close to ten and tried to sleep. As usual I could not get to sleep for quite some time but finally dropped off.

When I woke at about midnight everything felt wrong. I took off the splint but that was not enough. My left arm ached and my right knee hurt. My stomach felt queasy. Was I getting sick?

The worst was that I could not stop crying. I bawled and bawled, big sobbing messes, uncontrollable, inconsolable. I went into the bathroom, took a shower, came out still crying. I splashed cool water on my face, still crying. I lay down in bed and felt my body again shake with sobs.

I finally fell asleep, fitfully, woke a few times, managed to stay reasonably calm. I woke, still feeling (and sounding) funny in my tummy but at least no more crying.

I hurt, yes, but it did not seem that the aching and knee pain were the main reasons for the crying. I don't know what was.

Go Figure

Today I met with the DynaSplint rep for a followup, just before I had a scheduled PT appointment. I wasn't feeling particularly well, had some stomach issues, but they seemed to be evened out enough by the time I had the appointment, fortunately.

We went over how I put the splint on, adjusting the straps, and she read all of my comments and noted the progress I had made. She said I was doing really well, just as she expected I would. She recommended that I stay at level 9 for three or four days, trying to up the hours, then gradually move up, increasing the tension only every few days or so rather than every day as I have been.  I had mistakenly thought that I had to pull the straps to the same place every day, even when one or two were biting into my flesh. It was good to hear that no, I just needed to get it on right and adjust as needed.

After the rep left I went straight into PT as usual. I felt, for some reason, unusually tired. It may be that I had lost some energy with the stomach issue, whatever it was. I suspect I ate something suspicious.  I did not say anything about how I felt, just plunged ahead, pushing my body a little farther than I really wanted to, frankly.

I see an old pattern emerging. When people in authority do not let me know how I am doing I tend to work extra hard and feel resentful at the same time. I have dropped comments from time to time about what I do outside of PT, hoping that I will get a chance to describe exactly what my gym routines are, for example, because I think it would be helpful for them to know, to be able to adjust what I do at the PT office.  Nobody has taken me up on these hints so I just keep plugging along. At this point I feel I am doing as much as I care to do, as much as is reasonable to expect of me, frankly.  Six days a week at the gym, over an hour every day. I think it's enough, especially added to the three days a week at the PT office, which counts as another workout.

So there I was, pushing the leg extension and leg curl machines beyond what I really wanted to do, to a kind of breaking point. I don't think I hurt anything but I wanted to show that I am up for it, that I do not try to get out of work. (Believe me, I am not talking about a hell of a lot of work; just enough to make my legs feel, at the time, that they cannot do more.)

After PT I went to the beach. I went to Avila, found a disabled parking space, walked down the stairs to the ocean, took off my shoes,  and walked in.  I stayed there a while, enjoying the waves pushing against my legs, and then came back in and walked to the grocery there to have a sandwich. Not a strenuous effort but simply an enjoyable one.

Yet when I got home I felt so exhausted. I did not do any more today than I do many many days. So I don't know what was going on with me. I dozed a bit while watching one television show and finally turned off the set at nine and headed for bed.

Yet, in spite of feeling so tired and in spite of taking sleeping pills (Advil pm) and pain pills (Percocet) I am still awake. I lay there minute after minute, hour after hour, making adjustments to the dynasplint, to how my leg was laying, trying to get to sleep, and not succeeding. I never get to sleep before midnight any more, and often even later than that. I am hoping that by coming here to write this up I might have added yet another layer of tired and will be able to nod off quietly and stay that way.