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Maureensew
Member
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Posted: Sun May 18th, 2008 16:58 |
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I will be starting the MP July 1. I am a teaching assistant so I am off work for July and August. This is the best time for me to start the MP.
I am currently sitting in my "bat cave". I have covered my windows with dark blankets and existing curtains. I am wearing my current sunglasses as I type this(My NOIRs are arriving May 20).
I stopped vit D a month ago and I have been having Herx symptoms.
I am so grateful to have found this protocol. For the first time this winter I added 1000 UI vit D/day to my many supplements to try to make the winter easier for me. It was much worse! If I hadn't found out about MP I would have been so discouraged about feeling so much worse. I was pleased to find the info about why I feel better in the summer than the winter. I can tell that my bat cave feels better than being in the light.
I am using dark clothing to go out today. I bought a "cool" wide brim straw hat yesterday and then last night I found the info about the better quality UV hats. I will order one and keep my "cool" one for when my photosensitivity reduces.
My first prescription of Olmesartan has arrived. I am filling my mino prescription tomorrow.
I am gradually changing my food plan and weaning all supplements.
I am spending hours on the website and discussion site researching. I have a binder of print outs that is my text book. I am not used to using computer forums. This is going to be an opportunity for me to learn about that as I spend my time indoors.
I like someone's suggestions about lists of indoor activities to do based on severity of symptoms and energy levels.
I love to sew so I will darken my sewing room. I have a selection of favourite movies to watch on difficult days. I love to read. I can try new low carb recipes and freeze some for when I return to work in September.
It is so comforting to know that there are so many of you out there going through this at the same time. All the best to everyone!
white space added by Moderator. thank you.
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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expate
Member
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Posted: Sun May 18th, 2008 20:01 |
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It sounds like you are well prepared and informed.
I won't be starting the MP until July, but I've begun taking the same types of measures you have to reduce D and light exposure. I found I had to back off a bit because I too began experiencing what I suspect was IP (herx). I don't want to do that full out until I can take Benicar.
I also, had started supplementing with omega-3 and flax seed oil. It's what "they" suggest we peri- and full out menopausal women do to relieve symptoms. Grrrrrr. 
I like to sew also. In fact, you can see on page six (toward the bottom) of my thread (Odette's questions and ponderings) a sewing project I have lined up when my order arrives from Land's End! I'm also embroidering a caftan I ordered, though my hand starts going numb after a bit. We'll see how decorated it ends up. 
I'm planning on trying to work on a few writing projects I started but never finished once I start the MP. Beyond that, all I've come up with is watching movies/DVD's, which I expect I'll be able to do with NoIR's.
Well, all the best,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Julia
Advocate (on leave)
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Posted: Sun May 18th, 2008 21:51 |
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Hi Maureen, and welcome!
As Odette says, you sound like a very well prepared member! Have you found a supportive doctor?
There's just one other thing - due to the recent closure of the MP trial to new members, those who haven't already started a progress report in the Benicar forum need to apply to be accepted as a member. Please send an email to tmmangin@charter.net with 'MP application' in the subject line, and you'll be sent an application form.
Julia 
MP Memberships Temporarily Closed
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Sun May 18th, 2008 22:05 |
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Maureensew,
Welcome. I'm glad you are reading and learning about the Marshall Pathogenesis and Marshall Protocol. Most of all, I'm glad to see you are posting and making plans to get well.
As always, the Marshall Protocol Phase 1 Guidelines are always the best place to start your required reading. Please note:
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Because of the MP success and growing popularity, and the problems associated with numbers and our limited, volunteer nursing resources, there has been some recent changes you will want to know to succeed at your stated goal:
Julia has pointed you in the right direction,
please follow her instructions & link.
Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password.
Please also see Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol.
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I was so happy to learn about the MP too, and frustrated because it took nearly half a year before I found a health professional that would work with me (most of that time was spent trying to even get D metabolites tested!).
Like you, I also spent hours reading and studying the MP, even printing out information just as you have done. I also ordered NoIRs, avoided D, and lowered the lights but as I learned later, it might be better to just read and study the MP while waiting:
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
You might want to know that "bat" caves are usually completely dark and that is not the correct light description for those on the MP  . The MP is more like "romantic" lighting as seen in most restaurants, of about 30 lux.
Please read what others are posting about on the study site as part of your required reading, continue with library required reading, and ask questions about the Marshall Pathogenesis and Protocol here, on your own questions thread.
Best to you Maureensew--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Maureensew
Member
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Posted: Mon May 19th, 2008 06:12 |
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Thank you all for your responses. It is so nice to feel the support.
Odette - I have been taking the omega 3 and flax seed too. I have also been having a soy protein drink almost daily for a few years. All supposed to be good for post menopause. Just like any sewing nut I have a closet full of fabric and patterns that would keep me busy for years.
Julia - Thank you for the info on the application. I saw that membership had been stopped but assumed I was already in the study because I had received a response to my test results.
I am fortunate to have a VERY supportive doctor who I have been seeing for 16 years. I have gone to her with many things over the years that I wanted to try and she has always listened and supported me. When I took the MP info to her she was willing to go for it. She asked to photocopy some of the info I had brought with me and gave me the order for lab work.
When I went back for the test results she gave me a prescription for benicar and mino following the MP guidelines.
Janet - Thank you for your suggestions. I will adjust my lighting. Romantic sounds much better than bat cave. I will continue to study.
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Mon May 19th, 2008 16:22 |
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Janet, Could you be more specific about what you would have done differently while waiting to start MP with respect to avoiding Vit D and light exposure.
Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
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Offline
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Posted: Mon May 19th, 2008 19:12 |
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Maureensew,
This information is used by most to make a determination:
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
Best to you Maureensew--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Maureensew
Member
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Posted: Tue May 20th, 2008 00:45 |
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I am feeling a bit panicky about my application to be part of the study. I have sent 2 emails for an application. I just sent the second one. I sent the first one in the last day or two. I have received responses to everything else so fast I am concerned about not receiving an application yet. I really want to be part of the study.
I have been trying to find a thread where I read about the history of Canadians finding sources of Olmesartan. It went back to 2005 with many, many posts(very precise number eh!) I can find pieces of it but not in it's entirety. I don't know if this is a reasonable request but I keep reading about the importance of asking questions. Any suggestions?
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 134 |
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Posted: Tue May 20th, 2008 01:52 |
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Maureen
Canada Benicar
please relax about your application. We are all volunteers and are very busy and Meg has had the weekend away. she will soon catch up.
Thanks, all best, Barb ...
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Maureensew
Member
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Posted: Tue May 20th, 2008 02:28 |
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| Thank you Barb!
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Sat May 24th, 2008 18:48 |
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This winter I started taking an extra 1000 UI Vit D. As of last winter I was living a fulfilling, satisfying life considering my diagnosis of FM. I realized that I had done everything I could do to maximize my health but I was still finding the winters very difficult. That is why I tried the Vit D this winter. I was aware that I was feeling worse but of course had no idea why.
Then I found out about MP and that answered my question. So I stopped the 1000 UI Vit D mid April. I continued with other supplements that include 600 UI Vit D, Vit D foods and exposure to sunlight. I have experienced an increase in symptoms as a result of stopping the 1000 UI Vit D. I have been taking 4 extra strength acetominophen per day for 2 weeks so I can get to work. Three weeks ago I started a gradual decrease of all my supplements and Vit D foods.
I have reviewed the "Should I avoid sunlight and Vit D" info and I have decided I need to stop the reduction of supplements and Vit D for now. I am currently avoiding supplements and Vit D foods 3 days per week. I will continue with this for next week. I have also decided to not avoid sunlight until I can start on Olmesartan July 1.
I have been reminded of how bad my sypmtoms were when I was first diagnosed with FM. I had to make significant changes to my lifestyle to manage the symptoms. Those strategies, reduced expectations and thought patterns are coming back to me and helping me to make changes now to cope with the increase in symptoms. At this point my symptoms are about a 7.
I am continuing to study the pathology of TH 1 immune system dysfunction. It is becoming a bit more clear to me. I noticed today while talking to a friend that I am improving in being able to explain the pathology to others. I wish everyone good heath!
Maureen
[Mod: white spaces added to help those with reading difficulties]
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Julia
Advocate (on leave)
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Posted: Sat May 24th, 2008 21:01 |
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Maureen,
You are doing a great job of working things out for yourself. You are right to take the D reduction gently. If your symptoms become intolerable, you now know you can increase the vit D again slightly and see if it helps.
Keep up the good work! 
Julia
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Maureensew
Member
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Posted: Sat May 24th, 2008 21:52 |
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| Thank you Julia! Your encouragement means a lot to me.
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Sun May 25th, 2008 05:46 |
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| I am currently not a member of the MP study site. I have sent my request for an application but not received one yet. I have been assured that they are working on it and I need to be patient. I am wondering if I am not accepted by July 1 when I want to start Olmesartan will I get help from this discussion site?
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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natalie17
Advocate
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Posted: Sun May 25th, 2008 12:36 |
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Hi Maureen,
There are plenty of people around the world on the MP without the assistance of the study site moderators.
The best way to feel confident going into the MP is for you to understand all aspects of it.
Make sure you have thoroughly read all the links given to you above. A link I always go back to is ABC of MP , it's a list in alphabetical order of everything you could want to know.
You will always be welcome to ask general questions here.
Kind regards,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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Maureensew
Member
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Posted: Mon May 26th, 2008 04:42 |
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Hi Natalie, It's great to hear that I can get help on this site. I will certainly continue to study. Thank you!
Blessings Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Maureensew
Member
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Posted: Wed May 28th, 2008 14:47 |
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I have studied the posts about clothing. It is very helpful. I am going to order a wide brim black hat.
I like the denim idea and finding things I already have in my closet. I think I will do a second hand store search to add to my choices.
I continue to have tolerable IP. I am able to get to work. I have had to reduce my dancing to 1 time per week and even that has been hard for the last 3 weeks. I don't dance next week at all and then I will evaluate if I can continue with the one lesson per week through the summer.
I have read Trevor's posts about exercise. When I was first diagnosed with FM I learned about my obsessive exercise behaviour and how unhealthy it was. I did learn how to exercise gently. I started by riding a stationary bike for 1 minute 3 times per week and slowly built up to 25 minutes over a 6 month period.
I then started to include walking by starting out with 5 minutes. When I decided to start dancing there was a built in slow factor because you can't work up much of a sweat when you don't know the steps and you can only walk through them slowly.
As my skill level improved gradually so did my ability to handle it. I will probably have to take a break from my dancing once I return to work in the fall. The encouraging thing is that when I can return to it I will be able to have more energy for it.
I am struggling with patience(not my best character trait) to wait to start MP in July. It is the best option for me so I will follow through with my plan. This is giving me time to study and get what I need in place before I start.
Blessings to all on the journey! Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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expate
Member
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Posted: Wed May 28th, 2008 16:52 |
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Maureen,
What kind of dance do you do? I take ballet classes at the university during fall and summer semesters. They are intermediate level (non-dance majors are not allowed to take higher level classes... though I don't know that I'd be equal to an advanced class these days) but pretty demanding. There are a lot of musical theater majors in the class plus everyone but me and an English professor is 18 or 19 years old.
I read what Dr. Marshall had to say about exercise as well. What I took away from it was that if you are driving to punishing exercise because you think it's good for you, think twice. But if you have the energy and tolerable IP, exercise can help to perfuse the abx and further progress. I know he said gentle exercise, but I think that's different to everyone. I know of so many elderly dancers who are spry and healthy.
I hope to continue with ballet as it is one of my true joys, a transcendent experience. I know I can modify to make it less taxing. I already do to some extent -- I will sometimes sit out a repetition of petit allegro, etc.
A main concern will be finding out how photo sensitive I am. I can wear black tights and a long sleeve black leotard, but the material is not very thick. I'm sure my teacher will allow NoIR's. The problem is that the university has beautiful new studios in which an entire wall is glass. . I'll be able to find a spot at the barre that is not in DIRECT sunlight, but the room is lit with natural light. It would mean about 6 hours a week in that kind of light not fully covered up.
Anyhow, we'll see. Of course, I'd rather be healthy. If I have to sit out a semester or two, I'll certainly do it. I already had to miss one semester because of my shoulder.
*hops, spins, and twirls off to work*
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Maureensew
Member
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Posted: Wed May 28th, 2008 20:00 |
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Odette, I have been taking ballroom dance lessons for 2 years. This is a life long dream come true. I love it! Recently I have found it more difficult to concentrate and my legs feel weak and shaky.
Since I am off work July and August I may be able to dance some. I find though that if I can't dance at a level that is satisfying to me I am not so motivated to go. I also have the studio with the whole wall of windows.
I am encouraged by what I will be able to do once I feel better.
Blessings Maureen
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Maureen FM PH1 July08 125D75 25D33.6(Apr 08)25D28.4(Aug08) 25D20.4(Oct08) wellbutrin, omeprazole, amitriptyline, NOIRs, work 5 days/week r/t 30 min, covered up, low lux home
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 221 |
| Status: |
Online
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Posted: Wed May 28th, 2008 22:08 |
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I'll be able to find a spot at the barre that is not in DIRECT sunlight, but the room is lit with natural light. It would mean about 6 hours a week in that kind of light not fully covered up.
Take the advice of a grizzled old veteran. Don't even think about this. It's clear you haven't yet quite internalized just how hard your body will be working to rid itself of these pathogens. If you start adding stressors on top of that with exercise and light exposure, it's a prescription for disaster.
Start by being very strict. Give it a couple of months without doing anything but the MP. Then you can start feeling your way toward allowing some activities back in to see where you can get away with it. Once you start, a "healthy" lifestyle is: lots of rest, the right foods, and staying out of the sun. Out of the sun means being inside, no windows. Being outside, even covered, will give you problems if you push it. Noirs on a sunny day can be marginal at best, as you'll discover soon enough. Neural effects = No Fun.
I've watched any number of people in denial about light, and then watched them crash and burn. Just accept the restrictions and don't learn the hard way. It's very demoralizing and not a good start. Two years from now, you'll thank me for advising you to save your strength. You'll need it all down the road.
The MP is like climbing Everest; you can't run up the hill, you can't even run back down the hill. You put one foot carefully in front of the other in a mind numbing trudge and you keep going. It's slow. You'll lose faith from time to time. But you keep going. You'll curse your fate and think it's unfair. But you keep going. You'll give up activities you love (for now). But you keep going. You'll have days where you can't even remember what it's like to feel normal. But you keep going. You will find strengths and weaknesses you never knew you had. But you keep going. You will gnash your teeth and rend your garments in the best Old Testament tradition. But you keep going.
That's the reality. It's a book that allows no reading ahead. The punishment for rushing or cheating is something you won't want to repeat. Slow and steady is the only way you can get through this. You can live and even fuller life when you are well, to make up for all you sacrificed to get there. When in doubt, curl up in a 30 lux room with a good book and put another day of the MP under your belt. Every day is a victory. Every morning at breakfast, you shove a grapefruit into the face of Death, just like Jimmy Cagney.
It's two years to the day for me on the MP. I'm beat up, run down, and sorely vexed. But every day is a victory. And I keep going.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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