More structure, determination, and I’ve had it

Week 25 of this blog
Week 118 of this situation
Weight: 51 kg / 112 lbs.
Last fall: 9 days ago
Did my Physical Therapy exercises: 5 times (which is basically every day plus one PT appointment plus one day off)
Did my Occupational Therapy exercises: 5 times

You know that Stephen Hawking has ALS/Lou Gehrig’s disease, right? So, I could go on about how my brain is kind of like Stephen Hawking’s… But that’s not why I mentioned it. Someone told me that they read in his autobiography that after his diagnosis he was drunk for about a year and a half. Apologies to Mr. Hawking if this isn’t true. It certainly sounds reasonable. I was so sick and tired of everything this past week, heavy drinking sounded like a good option. Because being sick and tired of everything is utterly pointless in my situation. But so is heavy drinking, I guess, I didn’t do it. Yet.
Other than that it was a good week. I’m still going with that structure thing and I asked both my physical therapist and occupational therapist for a home training program. Which I then did everyday. Very pleased with myself. But (there’s always a but)… Maybe I was too determined and ambitious and wanting to improve. And almost started drinking because of that. I don’t know. I want to stick with the structure though and I’m determined to… enjoy myself. Enjoy the things I can do, rather than get upset over the other stuff. That’s a tall order. I’ll let you know how it goes.
I think I’m giving up on The Healing Code. I really don’t feel like doing it or even finishing the book.
That’s all.

The end of my dental adventure and… a fall

Week 24 of this blog
Week 117 of this situation
Weight: 50,5 kg / 111 lbs.
Last fall: 2 days ago (fuck shit fuck)

Let’s talk about the fall first. I’m okay. Didn’t hurt myself too badly. I’m just upset and annoyed that it happened at all. I was doing so well: hadn’t fallen in 8 weeks, had stopped taking ibuprofen, had survived the dental work and a stomach flu, and just as I thought things were looking up… This disease sucks. The biggest struggle after a fall is to not lose my positive attitude and momentum. But I think I’m doing okay. Want to hear about my post-fall-routine? (If not, just skip this next paragraph.):
First, I stay where I am, on the floor, and breathe and relax and calm down. However long it takes. Then I get up… however long that takes! On Friday (which is when this last fall happened) it took pretty long because I had to scoot over to the couch where I could gracefully (not!) pull myself up. Then I take Bach Rescue Remedy to soften the emotional impact of the fall. This was easier said than done on Friday because the bottle was closed really tight and I couldn’t open it. So I skipped to the next step, which is taking Arnica to soften the physical impact of the fall. I felt like I really needed the Rescue Remedy though because I was upset and it was evening and I needed to calm down to be able to sleep. So I went looking for my pipe wrench, which for some reason wasn’t lying around in the kitchen anymore but had made its way back to the toolbox, the very bottom of the toolbox (in case you can’t tell, I was having a great time…). I found it eventually and managed to open the Bach Rescue Remedy – yay! Oh, and I also took a few drops. Didn’t sleep very well though (even by my standards…). Overnight the soreness set in and I was really uncomfortable. No new paint spots though, just a general intensifying of pain… my spine and especially my neck is a mess – thank God I have an osteopath appointment tomorrow!
Other than that I had a pretty calm (= good) week. I had my last dentist appointment for the moment: removal of my last mercury filling. I’m so relieved. I find going to the dentist a very particular kind of awful. I get scared. I absolutely can’t handle that kind of pain. Unfortunately I also don’t handle the anaesthetic very well. The whole thing just exhausts me. So, I’m glad it’s over – for now. And I think this was an important step for removing toxins from my body.
Nothing new on The Healing Code front. I still haven’t finished the book and started using the code… but I’m still determined to do it and tell you all about it.

Random gratitude:
Ibuprofen. I’m glad I was finally able to stop taking it. And I’m equally glad I was able to take it again after my fall. This weekend could’ve been a lot worse!
Friends who don’t give up on me and keep calling and e-mailing although I may not respond for… weeks. Thank you!

Vata, fear and an infomercial

Week 23 of this blog
Week 116 of this situation
Weight: 50,5 kg / 111 lbs.
Last fall: 51 days ago

This past week a few of my friends told me (personally or in private messages) not to stress/worry about this blog and whether or not it gets written. Yes, I know. But it doesn’t work like that, does it? The previous format with very irregular blog posts WAS stressing me out, so now I’m trying this structure on for size. And if I don’t like it, I will try something else.
Also, in Ayurveda I’m a Vata constitution which means an emphasis on the principle of movement and the light elements of wind and ether. We “Vatas” benefit from structure and a regular schedule, so that we don’t get caught up in… everything! That makes so much sense to me and I found it very helpful to understand that about myself: In the past year I’ve tried to be lenient with myself and basically ditched discipline. This has led to me going to bed around 1am in the morning, getting up and having breakfast around noon, lunch at 4 or 5pm and dinner around 9pm. Didn’t feel too good but I didn’t want to force myself. But understanding the needs of my constitution, my discipline now has a different quality and I have an easier time sticking to my optimal bedtime and mealtimes because I know it’s better for me and I feel better. The Vata constitution also loves and needs excitement and doing things full-out, full-on and then some (like going to India for Ayurveda treatment…). But sometimes a more measured approach is better for our health (like doing Ayurveda treatment at home…). So yeah, this Ayurveda journey has been pretty amazing and I’ve only just started. Very excited to find out where it can lead!

In other news, I’m still recovering from this cold that technically ended over a week ago. Took a lot out of me. The scary thing about being sick was that I had to stay in bed for a few days and take it easy for a few more. And with this degenerative process that’s going on in all my muscles, I never know what abilities I may lose during a time of inactivity. This past week things (including my head!) have cleared up and I feel like my symptoms have gotten worse in three areas:
Speech: It’s increasingly difficult for me to enunciate clearly. And when I get emotional or have a coughing fit, I sometimes find it impossible to talk at all. I mean physically impossible in a really strange way. I’ve also noticed that speaking English seems to be more physically strenuous than speaking German. Or is that just me?
My hands: It’s gotten so difficult to grab and hold onto things. And at this point I can only extend my right middle finger fully. And… I don’t practice my occupational therapy exercises. At all. I know that’s bad and I’m not very happy with myself but I just can’t get myself to do it. It’s so frustrating to practice something without much hope of getting better, just to slow the process of getting worse.
My legs: I feel like I have lost (for the moment, at least) my natural walking pattern. I can still walk but only very slowly and I have to concentrate on it and somehow artificially create a walking pattern. This not only kills my quadriceps, it’s also not very stable and I’m as scared as ever of falling. Especially since I’ve realized that most options to prevent falling (crutches, a cane, a walker/wheeled walker…) are not available to me because my arms and hands are not strong enough. I’m not ready for a wheelchair. So, I’ve been working on my legs (stretching, strengthening, walking…) everyday. I guess enough fear can override the frustration of practicing something without much hope of getting better.

I finally started reading The Healing Code by Alex Loyd and Ben Johnson. I discovered this and started reading it a while ago because Ben Johnson claims to have healed his ALS through doing The Healing Code. Claims like that raise my eyebrows… but get my attention. I didn’t get very far at first because of the authors’ very Christian religious background. I’m comfortable with spirituality but organized religion… not so much. I picked it up again a few weeks ago after a horrible pain day. It was the day after my trip to Nuremberg to see the Ayurveda guy and I’m wondering if the long drive caused it: my left knee hurt and my right adductors, both SI joins, my lower back, neck, I had a toothache and a sore throat. And it felt like the combination of all those pain spots was too much for my nervous system, I couldn’t calm down, relax, get comfortable… it was horrible. And that was WITH Ibuprofen. I remembered that The Healing Code was supposed to be a method to calm down the nervous system. So I gave it another chance. I’m on page 216 and so far it’s all been about the “science” of The Healing Code and how and why it’s supposed to work. A lot of what I’ve read I really liked and it made sense, like information about cellular memory and conscious and unconscious beliefs. Thing is… it feels like an infomercial. It seems like on every other page there’s something about this being the only method that can solve all your problems… knocking pretty much every other kind of treatment, therapy or self-help in the process. Is that necessary? And now as I’m about to get to the actual Healing Code, I first have to read a Disclaimer & Informed Consent explaining that this is for informational and educational purposes only and they make no curative claims. Okay then. Struggling to keep an open mind but I can do it. I will read the rest of the book and try The Healing Code and tell you about it next week.

To end on a positive note, here are some random and not so random grateful moments:
The week started spectacularly with a visit from a friend from Holland. I can’t believe you came all this way to spend a day with me! Thank you!
I love this weather! Yay spring!
And… The other day I had an eyelash in my eye and had a really hard time getting it out with my somewhat weak fine motor skills… Thank God I don’t need contact lenses!

PS: I have my last dentist appointment tomorrow! Only one more mercury filling. Wish me luck!

I need structure!

This blog is stressing me out! Not the point, is it?
I don’t know, there’s so much going on and by the time I get to write about it… it’s generally too much. I need structure (I’m German and blood type A, so one might have guessed…). So I’m going to try to write every weekend about the previous week.
And yes, I know, it’s Tuesday. So technically I’m a day late at my first attempt at structure. But… oh, give me a break.
Also, I have abandonded my 365grateful project. For now. Not because I don’t have things I’m grateful for but because I find it difficult to capture them in pictures. And it stressed me out. And I didn’t like how my blog looked. I may take it up again later.

But for now:

Week 22 of this blog
Week 115 of this situation
Weight: 50 kg / 110 lbs. (I’m so upset about this. I was up to 52 kg / 115 lbs. but after painful dental work and a stomach flu… what can you do.)
Last fall: 43 days ago
(I know, this kind of looks like Bridget Jones’s Diary but whatever. It’s all about content, right?)

So. I’m not going to get away with writing about last week only because it’s been a couple of weeks. I’ll try to be brief.
I wrote about my last fall, the one I kind of delayed but then fell anyway. I asked my physical therapist about working with that delay to avoid falling altogether. Her response was not encouraging: she said to avoid a fall one usually works with the arms and hands. And that’s not available to me because the paralysis in my arms and hands is pretty bad. Oh well, I’m just going to work on not falling at all.
After that last fall I’ve a few new and persistent pain spots: my left knee and right adductors. Also, my right SI joint and lower back and my whole neck still hurt from way back when. But over all the pain has gotten much better. I even forgot to take my ibuprofen the other day, which would have been absolutely impossible a few weeks ago.
My dental work… Well. For what I can only hope was the grand finale of this dental adventure, I had a total of four fillings removed, two on the right and two on the left. And I will never ever let a dentist do that again in one appointment because you know how when you’ve been to the dentist you like to chew on the other side for a while… Sigh. And one of the teeth on the left, I don’t know, he had to do more work than expected and the nerve got upset for a while. Also, I got temporary fillings and on the left side they connected two teeth with one filling. That probably makes sense for the stability of that temporary filling but in terms of whole-body-connectedness and osteopathy, it’s a horrible thing to do and quite possibly added to the fact that my various aches and pains have been so persistent. But hey, it was only for two weeks… Except then the lab broke one of my permanent inlays and I had to reschedule my dentist appointment for the following week. And my dentist was going to do the finishing touches a few days later… Except then I got sick and had to reschedule for this Thursday. So here’s hoping that my next blog post will be about the end of the dental adventure… Except I already know it won’t be but I will save it for next weekend.
Getting sick. Well, I had a cold with a stuffy nose, headache, a slight fever and an upset stomach. Very unpleasant (especially when added to the ALS symptoms). But thankfully it only lasted a week and only “cost” me 2kg/4lbs.
Something good happened, too. I’ve been looking into Ayurveda as a possible way to help/treat me.
(I’ve mentioned this before, Ayurveda, TCM or IMT. I ditched IMT for now because the IMT practitioner I went to in Munich… Well, it felt like she didn’t really want to treat me: I sent her an email with a bunch of lab results, asking for her opinion and advice, and she responded that she didn’t want to get ahead of my practitioners in Berlin and I should just do what they tell me. Okay then.)
So, I looked to Ayurveda, partly because it seemed like a good reason to go to India and after freezing my butt off in Canada for a month I really didn’t think I could handle a Berlin winter. Also, one of my (many) ex physical therapists had told me about an Ayurveda doctor in India who had experience and some success in treating MS. Close enough. So, I checked out this guy’s website and liked it and sent an email and called… But for some reason I could never get an answer or get the right person on the phone, it was weird. I looked at other Ayurveda clinic websites but didn’t like any of them as much. And then I realized that the MS-Ayurveda-guy’s website has a link to a practice in Nuremberg. I called there and found out that the MS-Ayurveda-guy himself would be visiting soon, so I made an appointment and went to Nuremberg for a day. It’s a four hour drive from Berlin, so not exactly close, but a lot closer than India!
It was amazing. First of all, the guy was much younger than I thought and… kind of hot. Wonderful smile. If he could just smile at me for a month, I think everything would be okay. I also really liked his manner and I very much trust his knowledge. I don’t know much about Ayurveda (yet) but clearly he does and what he said made a lot of sense and he seems to have a plan. In Ayurveda, they don’t treat diseases, they treat the person. Yay! So he will give me herbs and suggest a diet and oil treatments to strengthen my own personal nervous system and immune system. I like the sound of that! And I can do it all here in Berlin. Wait, what?! But I want to go to India! I was so disappointed. He said, I’d be welcome at his clinic in India of course but he would suggest doing it this way, starting the treatment at home and giving it a few months to see how it works before going on such a long and tiring trip. Very considerate. I thought about it for a few days and almost made up my mind to go to India anyway. Because… there’s no guarantee, is there? I feel energized and optimistic that Ayurveda will help me in some way but there is no guarantee. It may not work, I may never feel better than today. I thought that if I didn’t go to India now, I may never again have the opportunity. But then I talked to the practitioner from Nuremberg who is also helping and guiding in this process and she explained that because of my Vata constitution (more about that next week) I tend to want to do everything at once and right away and sometimes it’s better to stop myself. And they were really concerned that the trip to India could seriously weaken me, the long flight and well, India! And I think they are right. Honestly, I don’t feel strong enough for this trip right now. I really, really want to go but I don’t feel strong enough. The nice thing about my talk with the practitioner from Nuremburg was that she sounded confident that the Ayurvedic treatment would help me, stabilize me and then I could go to India later. So I want to focus on that, do my best to give this Ayurveda treatment a chance and see how it goes. It’s been very interesting and positive already. More about that this weekend, I promise.

PS: I’m looking forward to blogging every weekend because then my blog posts won’t be so damn long…