Still here

Week 28 of this blog
Week 121 of this situation
Weight: 50 kg / 110 lbs. (I don’t want to talk about it.)
Last fall: 30 days ago
Did my Physical Therapy exercises: 3 times
Did my Occupational Therapy exercises: 2 times

It’s been a week of hanging in there and utter exhaustion. I still feel depressed and I have increased my dose of St. John’s wort yet again (well, my bioresonance practitioner has).
The biggest problem right now is sleep: I’ve been waking up 5 to 10 times per night for several months now because I have a hard time turning over in bed. But that’s okay, I usually wake up, struggle a bit to turn to the other side and fall back asleep. Only, this past week I haven’t been able to fall back asleep. And this lack of sleep is very weakening, which is crap because really, I’m weak enough from the ALS symptoms. It’s gotten so bad that even my bioresonance practitioner has suggested conventional-medicine-real-chemical-shitstorm-prescription-sleeping-pills. I’m not really comfortable with that sort of stuff but will explore it next week. This not-sleeping-thing has to stop.
Other than that, I used my stationary bike 3 times this week, trying out different saddles. Haven’t found the right one yet but I’m sure I will.
That’s all.

Health and happiness!

A rough week… or two

Week 27 of this blog
Week 120 of this situation
Weight: 50,5 kg / 111 lbs. (sigh)
Last fall: 23 days ago
Did my Physical Therapy exercises: 11 times / 14 days (I really like those. And my back is so stiff right now, I can’t afford not to do them.)
Did my Occupational Therapy exercises: 2 times (Yeah… I don’t like those so much.)

Wow, this disease has been kicking my ass.
So I decided, it’s okay to skip a week of blogging. How’s that for taking it easy?

One thing that’s been really difficult these past two weeks has been my serotonin level. I think.
I should probably start with a disclaimer: I’m about to describe my experiences of the last two weeks and what I think caused them based on what my bioresonance practitioner explained to me and some information I found on the Internet. I did not read (or understand!) all of the scientific information available (if some of my science minded friends want to do that and enlighten me, that would be great).
Serotonin, as we all know, is the neurotransmitter responsible for feelings of happiness (and many MANY other things…). And my bioresonance practitioner told me that ALS was associated with lower levels of serotonin. I googled it and found some studies that seem to confirm this. In other words, ALS patients are not only unhappy because they have a horrible disease with increasing paralysis, we’re also unhappy because we may have lower levels of serotonin. Juuuust great. What’s really great, is that my bioresonance practitioner is aware of this and prescribed St. John’s wort capsules. I’ve been taking them (lots of them!) for about a year and it has made a big difference to my mood and my ability to deal with this situation. Except sometimes the St. John’s wort is not quite enough and I get depressed anyway. It’s a weird feeling. I’m not totally out of it but I notice these things that are not going well and it annoys me but I can’t do anything about it. Like, I lose my appetite and find it hard to eat enough or even drink enough, and most of all I can’t go to bed at night, instead I stay up in front of the TV. I wouldn’t call it “watching TV”, it’s more like sitting in front of a TV that’s on. Should be easy enough to change that and do the right thing, right? Well, it’s not. The last time this happened was around Christmas and it lasted about three weeks. With bioresonance treatments and a higher dose of St. John’s wort the feeling eventually subsided and I felt normal again (well, you know…). This time I started feeling depressed about 2 1/2 weeks ago. And I find it so helpful to know what’s going on (at least I think I know) and that it will get better. All I have to do / all I can do, is hang in there, breathe, do my best and be kind to myself. I feel like I am now close to the end of this “episode” (I don’t know what to call it) and it’s about time!
Another thing that’s associated with low levels of serotonin, is increased spasticity/muscle tightness. That’s exactly what I’ve been experiencing these last two weeks. I keep getting spasms in my back and quadriceps, and my lower back and calves are sooo tight… You should see me first thing in the morning: I can’t straighten my knees because my gastrocnemius (calf muscle) is tight and I’m bent over with an arched back and my butt sticking out to there… And it takes about a half hour of gentle moving and stretching until I can stand up straight. I’m not kidding, 30 minutes. Also, I wrote a while ago that technically ALS symptoms are pain-free… This is no longer true. The spasticity and muscle atrophy lead to muscle imbalance which either causes pain (in my neck and lower back) or prevents pain from healing (my left knee and right adductors still hurt from a fall that was ages ago). I mean, it’s nothing compared to the pain I had from my bone bruises (which have healed) but I’m never completely pain-free. Wait, that’s not true. I’m pain-free when I don’t move.

Last December, during my appointment at the ALS clinic I was told to try to keep my weight but gaining weight would be very difficult/impossible. I weighed 48 kg/106 lbs. at the time and I was determined to prove them wrong. I did pretty well and gained 4 kg in two months but then I got sick and lost 2 kg again and I have found it really hard to gain that weight back. And I realized that they were right at the ALS clinic. This disease does something, it takes energy, burns calories and eating has become… exhausting. Everything about it, bringing the spoon all the way up to my mouth, chewing, swallowing. I take forever to finish a meal (forever meaning over one hour). And it’s no fun, I have to stay really focused on eating during a meal, it feels like a chore. But I’m not giving up (never!). My goal is 55 kg/121 lbs. That seems like a healthy weight for my height.

Some good things happened, too. Well, good in the end but the process was somewhat difficult. I now have a cane and a stationary bike. The cane… I thought I wouldn’t be able to use one because my arms are so weak but my physical therapist encouraged me to just try it out and it really does help my walking. I needed the lightest possible cane of course and that was much harder than expected. My dad and I went to six different medical stores and the level of incompetence was scary. How is it possible that someone working at a medical store, selling canes has never thought about the weight of a cane?! They usually had no clue what these things weigh or why that might be important. My situation with paralysis of arms and legs might be unusual but I’m sure that every little old granny would appreciate a light cane, too. Maybe not for the trial walk around the store but two blocks down the road 100g can make a big difference! Anyway a, I have a wonderful cane now, 209 g. And it’s kind of stylish, too! I’ll post a picture sometime soonish. The stationary bike… Not too much trouble there, except UPS seemed to have a difficult time delivering it. And it arrived here broken. But I got a replacement and now everything is peachy. Except the saddle is very uncomfortable… but maybe I just have to get used to it. I’ve only been on it twice so far. Will keep you posted – as usual.