Andrew, I know you want me to do the tracking project, but I don't have time at present. I'm taking notes and I'll post them here before I can do it properly...
Tuesday, January 26, 2010
This is my one week report:
Firstly, I still do not experience back pain while sleeping or not much of it. There is some ache and stiffness in my neck when I’m laying on my side, but it could be due to the stretching of the neck I’m doing during the day and started at the same time as IBT. I’m using much thinner pillow while sleeping on my side and neither spine nor neck breaks a sweat. I sleep like a rock – without dreaming.
Secondly, I think my fatigue is improved. Again, I’m not sure it’s an effect of IBT; see, I’m lazy by nature and I always had excuses not to exercise, and my muscle power is rubbish, really, but I have a New Year’s resolution to exercise and thus far I’m sticking to it. Anyway, for the first fortnight I was barely able to exercise for ten minutes, and I was half-asleep for the rest of the day. But for the last two days I exercise for an hour straight, and I can function just fine after that despite the fact that I have a mild cold. Of course, that could just mean my endurance is better.
Thirdly, my sitting position is better. I keep my head almost straight during the day.
Fourthly, I can stand straighter (while holding someone), my legs are stronger, and obviously I’m taller thanks to it.
Monday, February 1, 2010
Week 2 of ITB and 4 of exercises was awful. I was exhausted all week; can’t keep my head up, sit more or less straight, and sitting up alone exhausts me, I don’t eat as much because, frankly, I’m too tired to eat. Being in bed is a bliss. That’s kind of why I never was able to exercise systematically as after initial improvement I was feeling worse than before starting. I am not giving up yet, trying to tough it out. My neck muscles are sore from exertion, I guess. I don’t sleep like a rock anymore, tossing around a lot. Today I woke up with my feet touching the bed frame, so I did slide down quite a bit. There is some back pain, but nothing unmanageable. For the last 3 nights I’ve been dreaming and remembering the dreams. 2 nights ago I had a CCSVI dream – I was talking to dr Kostecki and he told me he couldn’t help me – I hope it wasn’t a prophetic dream . More positive, when I sit, my shoulders are almost at the same height.
Saturday, February 6, 2010
Week 3 of IBT brought the abatement of the crushing fatigue that made me so miserable last week. I come to suspect that my menstrual cycle was to blame and nothing else. I sleep just fine – Saturday 12h – dreams are infrequent but vivid. My muscles are slightly stronger – I started using 1kg weights on my legs when I exercise. I don’t get any major back pains, just some aches after sitting for too long. They go away very quickly and I don’t mind really.
Now, Andrew, you’ll like this – when I lie down, it’s very obvious how much straighter my spine really is – even my mother noticed and she is a huge sceptic. Also, when I sit, both my shoulder blades touch the back rest and it is now my normal position I can keep up all day.
My neck annoys me though. I already told you I now am able to bring my neck to the straight position, and it becomes easier every day. However, I cannot lean it the right way one bit. There is some blockage I can’t overcome and it frustrates me. I’m probably too impatient.
Tomorrow I’m going to increase the incline.
Tuesday, February 16, 2010
My father had a stroke of ingenuity and he brought a car elevator to set my bed to exactly 8 inches/20cm and be done with in. It's exactly 5.22 degrees incline now.
As far as my 4th week of IBT went:
Unpleasant bits first, I have trouble falling asleep, and I don't sleep as soundly as before. I get hot, and I can't stand having my hands covered (which is strange because I usually get cold when lying down). I didn't dream all week.
And good stuff, I think my fatigue is improved. I sleep less (today 9 hours, while it's usually 11h) and I stay up for 13 hours without the usual zombie afternoons and evenings. Moreover, I doubled my exercise regimen, I do get exhausted, but I recover very swiftly and can function normally afterwards. The wheather is awful so I don't attribute my state of wellbeing to it.
Sunday, February 21, 2010
I can now lie on my left side without much effort.
Monday, February 22, 2010
Week 5 of IBT, 1st at 8 inches
I’ve given up all but one pillow. I slide down a lot during the night – even 10cm. I sleep just fine even though much less. Still not dreaming, or at least can’t remember afterwards. No back pain or any minor ache even which is good I suppose. On Saturday I went to a family do where I received first objective insight into the improvements I noticed as everyone commented on how well and straight I look. I was very pleased .
I am now able to get in bed from the wheelchair without much assistance. I couldn’t do it with such ease for a few years now. It must mean my muscle strength is improving greatly. Unfortunately, my spasticity is pretty severe in every part of my body lol. I never had such trouble before, at least not after I’ve exercised. Yesterday was 51 days of daily exercises. It must be a record. I’ve been ill for 19 years, and it’s the first instance of my resolve not wavering once. Maybe it’s because I’m out of school/college and I don’t have a steady job so I don’t have any excuses, but that was also true last year. Or maybe I’m finally mature and determined enough to know what’s good for me, but it doesn’t seem right. I’m just full of energy and I’m so thrilled! It must be due to inclined bed, what else? I’m not on any drugs.
Wednesday, February 24, 2010
I regained the ability to turn on my stomach and back.
Sunday, February 28, 2010
Week 6 of IBT brought two things: dreams (4 nights out of 7, and some really bizarre dreams, too); and symptoms of a heat stroke (blowing it out of proportion here, but really, I’m too hot a lot!). I’ve got rid of one layer of clothes, and I don’t need a blanket as much (I only have it now coz my dog dislikes laying on my bony lap. She’s almost 15 years old so I’m humouring her with that.) Yesterday, my mum was cold, and I was not – that’s really something.
Thursday, March 4, 2010
I received this PM
tlynn wrote:
Hi Asia,
I was reading your post on 1/23/10 about your increase in appetite. I think the loss of appetite , weight loss and hair loss is due to iron overload. I have experienced these increasing since i was diagnosed 5 years ago with spms. I think the return of appetite is the iron draining.
Terri
That's very interesting. I didn't think to mention my hair before but Terri has a point here. I always had thin and weak hair, and there was never much of it, even to the point of bald patches. The last two years I was stubbornly growing my hair and it was constant war with my mother about cutting it. Only recently we were laughing it off with my mum because my hair is loads better, and there is no longer a need to wage war. My hair is quite long now, as it hasn't been in years, and bald patches are filling up. Can IBT really help drain iron?
Thursday, March 11, 2010
It’s been over a week since my last update, and I can tell you it is a mistake as I’m not sure I can remember everything I wanted to mention.
First, I wanted to elaborate on the subject of my fatigue. It has never been my most disabling symptom, before IBT I’d say my FSS was 4.5 – 5 with periods when it’d flare up to 6.5 – 7. Last year was especially bad in this regard, and I had very many zombie days. The summer and heat were worst. I don’t nap so when my fatigue gets going I turn into an undead, as I say. Whenever I missed sleep (and there was no exam or other event that looses adrenaline into my system) I was unable to do anything much because I’d be too exhausted. If there was an exam etc. I could go without any sleep (and often did) coz I was too keyed up to feel worn out.
Ok so now a few post-IBT anecdotes about fatigue.
I noticed two kinds of days ever since I started sleeping inclined. I would say, in general, I am better off, with FSS below 4. However, during my PMS days I get a ghost of those zombie days, not as severe, maybe 5 – 5.5 at max.
It’s 8th week now, and on Monday I maybe got 5 hours of sleep (I usually get 10), and I was tired, of course, but it was nothing unmanageable. I went about my day as usual, and even did my 2 hours of exercises, not relenting one bit. The only thing I had trouble with was creation so talking storylines was out for the day, but it was a small inconvenience. That was a huge achievement, I tell you. I went to bed at normal time.
Today, I slept mere 8 hours and I feel absolutely fine. The only thing is that the day seems incredibly long and I don’t know what to do with myself. Some damn infection is attacking me and despite that my fatigue level stays low.
That was quite long-winded, oops!
Monday, March 15, 2010
At the beginning of 9th week I noticed 3 things.
A while back I mentioned here that when I stayed up late I’d get a strange tingling in my fingertips and sometimes toes that I associated with my sporadic epileptic attacks. Well, they’re gone – utterly and completely disappeared.
Spasticity – several weeks ago I reported that this symptom exacerbated, and badly! Well, it seems to have returned to how it was before, or even better than that.
And yesterday at dinner I made the observation that I’m not so much of a klutz anymore. My hands don’t seem to tremble as much as usual.
And one more thing, I have a cold, and it’s probably the worst one this winter (I had a few minor ones, this one isn’t half bad either, but it’s the worst). So, my nose is blocked a lot and I have some trouble breathing right, but, oddly enough, I don’t feel more worn out. That’s unusual.
Tuesday, March 23, 2010
Bad news. I’m a zombie again. I feel such crashing fatigue today that it is mind-boggling. It is especially noticeable after the weekend when I was bouncing up and down in my seat from the excess of energy. Today, I’d like nothing better than to lie down. Yesterday was only a little bit better. I can think of three possible explanations for this unwelcome change.
First, I didn’t get my customary daily caffeine amount, and that’s some unpleasant symptom of detox.
Second, it’s just my reaction to less sleep, as I have to get up pretty early to go to my physio in town.
Third, the physiotherapy is to blame. I started it yesterday and I exercise for an hour on a flat bed in addition to the stuff I do at home.
Monday, March 29, 2010
Nothing changed much, but I did notice a few things.
My acne is greatly improved, and I can speak more fluently, my voice doesn't shake or stummer so much. I can breathe more deeply.
I'm not sure what to make of my fatigue; it's very erratic. I'm inclining my bed at physio today.And I don't think I'm EDSS 8 anymore, not quite 7,5 but definitely closer.
Friday, April 2, 2010
Another bad week.
By bad I mean I wasn’t feeling that great. It got to the point where I started worrying the improvements brought by ibt were disappearing. I had trouble sitting straight again, and I was very very tired. But now I begin to speculate that tiredness was not actually MS-induced fatigue but being worn out from increasing my exercise load (3h a day now) and getting up at the impossible time of 7.30am. I have a day off today so I was able to sleep in and it made a huge difference.
I had one of two beds at physio inclined 10cm, the other is so massive that I didn’t bother.
8th of May 2010
I apologise for neglecting to report. There has been a major setback around Easter and I was in no mood. And later the stupid jet crashed and it’s only gotten worse. It proves beyond a shadow of doubt that stress is bad for MS. I have gotten a flu and developed a new symptom; crying at the slightest provocation.
So, most of the recent improvements are gone. I feel weak and mentally fragile. The only thing that stayed is my resolution to exercise. I exercise but with much less vigour and motivation.
I had a blood test done and the results are pretty bad.
HGB, HCT, MCV, MCH are all too low, MCHC is on the bottom line of the norm, and RDW is too high. Apparently, that means my iron levels are too low (I was unable to discuss my results in details as the doctor was unbelievably arrogant; according to her, I don’t need to know as I haven’t studied medicine). I don’t fancy taking tablets, at the moment I added more parsley to my diet.
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