Thursday, December 15, 2011

Things you can't say out loud..

Today is the day that inevitably comes around a few times a month, despite all my efforts, I want to be left the hell alone! I have been on a B12 and HTP regiment and feel much better. I have yet to add the vitamin d or Q12 I have been planning simply because I haven't had the funds. But even with the better days, i have hit the wall. I knowingly did too much the other day and now Im paying for it. I ran a couple miles, went to two different supermarkets, made brownies for dance class, cleaned the house , hung new shades, cooked dinner, bought a new car, stressed over a money/daycare issues, and to top it off I have been battling a respiratory cold since mid September...then very clearly expressed to my husband that I needed a break. My back , my head, my neck, all the usual complaints.I couldn't wait for school the next day so I could sit and do nothing and try to rest. A few hours later upon my daughter coughing for a few minutes, he asked her if she wanted to stay home from school the next day..and of course she says yes...WTF.  Now can I tell my kids father hes an ass? Not in front of them..but in my head I said it ALL night long. And of course the next day was pure hell. She was definately well enough for school, and i was laid up with the worst back pain, struggling all day to play with her..growing more and more resentful as the day went on. I tickled her and had coffee, popped a few advil here and there, and managed to get through the day. But all I can think is I want to slap a certain person in the head. Someone who is usually pretty supportive, to do such a stupid thing and then get to walk out the door to go work and not have to witness the difficulty its caused. So after crawling on my hands and knees through the last 2 days, today I am trying some meditation techniques to get through at least until he is home from work. Today I will go in my bedroom and shut the door and leave him on duty till bedtime.

Oooooooommmmmm
Oooooooommmmmm

Thursday, December 8, 2011

Quick update

B12 is helping with the mental fog immensely, and i have more energy. The HTP5 is definitely helping with sleep and a little with my mood. Even when I mentally feel like I want to do nothing but sit around and be depressed the physical boost i have gets me through it. I find my self asking "why am I doing this again?" Aaand it's because I can. My body has actually said "NO" to sitting around. But it is only half hearted sometimes, I still wish to enjoy more of what I'm doing..not just doing it because it's my job, or my kids are watching.. So the last kink to work out I think is adding the Vitamin  D to help more with the depression (not too much!) and this much talked about Q10 . Because as good as I feel, that is still an issue of course. Especially my back. So although I have a lot to say I have no time and I will post again asap!

Q10

Sunday, November 27, 2011

Improving brain Function in Fibromyalgia Patients

This is very interesting and worth taking a second look at.
"This is a novel approach to the study of fibromyalgia,"-Manish Khatiwada, M.S. 
 http://www.theeagle.com/health/Improving-brain-Function-in-Fibromyalgia-Patients

Tuesday, November 22, 2011

B12 to the rescue!

After much investigation and talking to multiple people, I decided to go off my meds and try the vitamin route. I have the pleasure to report I feel great. I have by no means been cured but I have had energy, less pain, and I am actually exited to do things that I have been for a long time doing reluctantly, if at all. There are better nights of sleep as well and we all know this is crutial to our well being.B12 at 10,000 mug and HTP 5 at 100 mg seem to have given me too much energy, as if there is such a thing. I was happy to feel good but then found myself frustrated with the fact that nobody could keep up with me, or talk fast enough, even that ther were not more hours in the day because there was so much I wanted to do. It was like I had been living for a year with my hands tied behind my back and someone came along and untied them.I just became frustrated at the end of the day. So I have decided to reduce my b12 to half, and see if that helps. It has been 3 days at half with the HTP 5 and I can barely tell the difference. I will try this for 2 weeks and if I'm still too amped up I will cut the HTP 5 in half as well. I am happy with the results but do not want to cause another set of problems for myself. Maybe, just maybe there will be some success with these and I wont need to spend time and money subjecting myself to the rediculous toxic effects of the prescriptions. Hopefully this is not something that I will become too tolarant of and it will stop working, but for now I am enjoying it. I think with winter approaching I will also be adding some vitamin D to the mix to further combat the depression. That in the winter is the worst. Have some hope!

Tuesday, November 15, 2011

Spoons? What spoons?!

Had some chocolate before bed last night...bad..up all night. But I was ambitious enough about it to get some photos ready for an upcoming gallery show. Yet another thing I have been procrastinating about. Joined some websites and support groups and generally made good use of my time. Feel okay and today that is enough. Waking up is always something I look to as a kind of grab bag. When I wake up I never know what I'm going to get. Good day-bad day, a lot of pain-a little pain.. But today I did not need anymore spoons, nor did I even think about it.

Monday, November 14, 2011

Pudding feet

Trying to stay motivated today was like trudging through pudding. I was making forward progress but not very enthusiastically. As usual I procrastinated on a task so I had no choice but to force myself to get it done today. My mind was focused but my body was wrestling it to submit to the power of the couch. Alas I was triumphant! I know some things need to bone to set an example for my kids, or to prevent that extra ten pounds, or even just to hide the fact I feel so bad from everyone. Some days its easy, some days it's hard and I am resentful. Then there are days where I get nothing done at all. I am still trying to give myself the okay to have those days now and then that it's okay to do nothing and just take advantage of the physical down time. But my ADD is always preventing me from getting mental down time, therefore I never, ever feel as if I have rested. EVER!!!! So today I have pudding feet, but my mind is sharp. Let's see what tomorrow brings.contemplating on a purchase, link below, but on the fence. I did buy a "yoga for back care" and it was great so nat all these excercise DVDs are a gimmick. will update if I do it, good or bad outcome.
http://www.fibromyalgia-fitness.com/

Sunday, November 13, 2011

Tired!

"Its hard to explain to someone who has no clue about an invisible illness. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (PTSD, Anxiety, {Intracranial Hypertension}IH, Bipolar, Depression, Diabetes, LUPUS, Fibromyalgia, MS, ME, Arthritis, Cancer, Heart Disease, Epilepsy, Autism,M.D. etc.) " Never judge what you don't understand"."

Thursday, November 3, 2011

More vita news

Bad day

Here we go with the dark days, causing my body to want to curl up in a ball, under the covers and just stay there all day. Winter time is terrible. Less sunlight and fresh air really does a number on my mood. Trying tricks that have worked in the past, and things I've read about and finding minimal relief. No matter how many blogs I read, or support groups I join I still feel alone. When I struggle through the day and wish for time to myself I never seem to get any but when I get a few moments here and there I don't have the energy to make the most of that time so I am still constantly feeling like I'm not getting anything done. Not my worst day but not my best.

Tuesday, November 1, 2011

I walked the walk

I did my 5k Saturday and I stuck to the plan of alternating running/walking so as not to put too much stress on my body. It was a little disappointing that I even had to do that. I wish I was in a place I was a year ago, or 4 years ago. But I am not. And so goes on with the lesson of acceptance. I did it, I finished, and only 2 and half minutes off from my time last year when I ran the whole way. So in that respect I am proud of myself, but I still have some internal embarrassment  that my health had deteriorated to the point where I had to walk at all in the first place. I don't know if this is because I just cant accept  that my old body is gone, or if its just a momentary feeling because I wasn't as fast as least year, but in any even I finished. I raised a lot of money for Special Olympics and my family is proud of me. I don't like when people call and ask me to do things that I cannot do because of my back, or whatever ailment of day might be plaguing me. It makes me feel like I have to explain my no answer and wonder if they think I'm making it up. I wonder if they even remember when they call that I have become much more physically limited than I have been. That's isolating. Feeling like everyone ele can do things I used to be able to do. Today I need more spoons. I cooked, I cleaned, I organized some photos for an upcoming show, had one day care kid and now I'm blogging. Dear lord I still have to do showers and bedtime routines   At least today I am in good spirits and my back only hurts a little. Oh yeah..and nothing went numb today..so there's that.

Monday, October 31, 2011

Too much exercise?

I signed up for a 5k and thought it would be a great way to stay motivated to run even though it has become increasingly harder. I know that my health has declined so much since my last run that I would not be able to keep pace with anyone on my team, and I was okay with that. I set a goal just to finish. I would not try to beat my time from last year, which was a hard decision because I am very competitive by nature. But I had to face that fact that my body would not allow me to do that anyway. So I  took it as s lesson in acceptance, and patience. Just finish. So I had been training to just finish, not excel. My run was Saturday. I did better than I thought I would. I was only 2 minutes behind my last time. But inside I still had some resentment and disappointment that my body is not in the same condition it was 10 years ago, or even last year for that matter. Then upon coming home it became harder and harder to walk as the day went on. The back pain, and pain from a pulled shoulder muscle nearly crippled me and I spent the rest of the day on the couch with heat patches and pain pills. Now I am struggling with the question that maybe running is not for me at all, or did I just push myself to hard during this one instance? I am trying to accept things and live each day the best I can, but the mental game is getting old. Guilt, disappointment, embarrassment, feeling like I cannot fully open up about this condition.Wanting to cry but not wanting to seem weak. Wanting to complain without whining, wanting to be strong and feeling like a fragile piece of glass. Days I'm optimistic and feel good I have hope and feel conflicted admitting I have anything wrong at all. But I ran. I raised a lot of money for a non profit organization, and my family is proud of me..but I am still struggling to be proud of myself. I am wondering if any of this goes away, or if continues on like my pain, and I just have to deal.

Thursday, October 27, 2011

vitamin supplements

I have been hearing a lot about vitamin supplements and manuka honey (25) lately bringing some relief to many Fibro sufferers.. I am contemplating switching from meds to vitamins..will continue this thought with you later, back hurts a lot today and this is almost impossible.

Wednesday, October 26, 2011


 James Van Praagh 
Mindful meditation is the art of becoming deeply aware of the present situation.

Music and mood

I have discovered in the past that music is a great mood enhancer. It can make you cry even when you didn't think you were sad. It can make you want to dance when you thought you would never get up off the couch, and it can make you think you are stronger than you thought, that whatever is happening now may not be so bad. That you can get over it. You may be ok when you come out the other end of this bumpy un-mapped road. Find what makes you happy. Find what makes you move and get it all together on one cd or one playlist on the ipod, and use it. Use it like a pill. Listen whenever you want to do nothing..let the music guide you. Even if it is just a good cry, get it out. Its cheaper and better for you than a hundred others you may chose to do instead.

Ideas for managing your mood

some of this is helpful, some is not. Pick and choose as you see fit!
http://www.findingoptimism.com/mood-chart.html

Rain vs Pain

What is it exactly about the rain that causes so much pain for people with with Fybromyalgia, arthritis, depression, and other illness? Lack of sun and cold is easy, but rain? Water is a gift of the gods, we are mostly composed of water, we need to drink water to survive. The planet thrives and grown and reproduces because  of it. So why does it wreak havoc on us so? I guess that is the question of day.

Tuesday, October 25, 2011

Struggling with my enemy

I am a victim of my own persecution. I am trying so hard to be like everybody else, knowing it can never happen. I am trying so hard to push through the pain, knowing it will never get any easier. I am dealing with the fact that my body is no longer the same friend to me as it was 7 years ago, but it is slow. I lie. So I guess that means I'm a liar. I lie everyday and say "good how are you" when asked how I'm feeling. Still wanting to be like others. Reading a book written by a Buddhist to find some peace of mind in an otherwise peace-less body. Today I can do what I can  at a pace that is comfortable for me and that is all I can do for today.

Chronic Fatigue Syndrome

http://www.bbc.co.uk/news/health-15401746

Question for today

When do you decide the pain is too great and just lay around all day, or to just push yourself through it no matter it is? How does this make you feel? For me that's almost everyday. I have kids! Laying around to nurse my wounds is not an option.

  • Stick to a sleep schedule. If you go to bed at the same time every night, your body will get used to falling asleep at that time. So choose a time and stay with it, even on weekends
  • Keep it cool. When a room is too warm, people wake up more often and sleep less deeply. According to the National Sleep Foundation, studies show that you're likely to sleep better in a room that's on the cool side. So try turning down the thermostat and/or keeping a fan on hand
  • As evening approaches, cut out the caffeine. Caffeine has a wake-up effect that lasts. It's best to avoid it well before bedtime. That includes not just coffee, but also tea, colas, and/or chocolate
  • Avoid alcohol before bed. That “nightcap” may make you sleepy at first. But as your blood alcohol levels drop, it has the opposite effect. You may find yourself wide awake
  • Exercise in the afternoon. Afternoon exercise may help you sleep more deeply. But exercising before bedtime can make it harder to fall asleep
  • Nap if you need to, but be brief. If you're so tired that you must take a nap, set the alarm for 20 minutes. Snooze any longer and you may have trouble falling asleep at night
  • Make your room a relaxing refuge. Treat yourself to comfortable bedclothes and snuggly pajamas. A white-noise machine or fan may help you fall asleep to a soothing background sound
  • Develop a relaxing bedtime routine. Reading helps some people fall asleep. So does listening to soft music. Do whatever works for you. But try to follow the same routine every night to signal your body that it's time for sleep

Monday, October 24, 2011

Something helpful

http://www.supportgroups.com/
http://www.butyoudontlooksick.com/
please feel free to share some more

Some non medical treatments

Treatments for depression that do not involve prescription medication: 
1.a light box is a small light usually on a stand for table top use, that emits a 10,000 LUX of Natural 2.Spectrum® Daylight to combat the effects of depression.
3. Vitamin D
4.Medical Biomagnetism-balances the ph in the body
5. EMG-biofeedback training
6.Aerobic fitness
7. 7+ hrs sleep
8.Transcutaneous nerve stimulation
9.Massage
10.Hypnosis
11.Acupuncture 
12.Interferential current stimulation
If anyone has tried any of these please share your story!

Bad Day

So here I am  struggling over my foolish decision to run a 5k this weekend knowing my body was not going to cooperate with me. Now the added stress is crippling me even further. Just because you look fine on the outside does not mean you are on the inside. Looking up the latest news on Fybromyalgia treatments and posting back my findings. I am open to any new information someone might have as well.