When you procrastinate...for a year!

Well we all know procrastination and lack of energy go hand in hand. Lack of energy and fibromyalgia also go hand in hand. So it should come as no surprise that I have put off even looking at this blog for quite some time. I have great ideas, I write notes, my phone is full of photos, I have dreams of this beautiful post with all these pictures I have taken and then by the end of the day its all fizzled out and I cannot possibly bring myself to do one more thing let alone sit at the dang computer or on the phone. I had a website dedicated to fitness with fibro and I could not maintain it. My husband was originally going to hep and that didn't work. A few friends who do website were going to help and of course that didn't work out either. When I had more time I was able to be focused and get so much done. Even with some bad days or weeks thrown in. I used to read blogs and websites and think  "wow, the last post was a year ago or 2 years ago. Where did they go? Dont they care? What about the readers?"

                                                                       
                                          BAAAAAH

Now I do!

How easy it is for that to happen and how intrinsically I understand it now.
 Now I have no time and with some bad days thrown in there it seems every day only the bare minimum gets done.
Im just surviving. I have no time to share my entire story with the world. Or half my sto...well, even 1/4 of my story.....with anyone.
But I do have some highlights and plans to fill in the blanks when I have a couple days off next week. (best laid plans.....fingers crossed).

Probably the biggest thing is we moved a few months ago into this new house. Its a shade smaller and for someone who's got ADD, OCD and Fibro, it went fairly well. I had no major stress or anxiety issues until a couple days after moving in. (Thats big because we were living out of boxes all summer leading up to the move. More on that later) We left some things at the old place and the hubster got a friend to go get it all. I went over the next day to "clean" and saw there was still a million things left including heavy furniture and so yeah...I had a flip out. I wanted, no, NEEDED to be done at the old place. 

THE OLD PLACE...sounds like a book title. It could be had I desire to write everything down. We were packed in like sardines with our neighbors (not the good kind). It was loud, stressful, we had no privacy, we had constant knocking on the door, lots of foot traffic, car traffic, noise from a bar and also the drunk people staggering down the street after it closed. We had fights we had to call the police for every other month, a half way house, a rehab center, a 7-11 and a liquor store, neighbors who blasted music from their cars at all hours.....I could go on but the kicker was the kids couldn't ride their bike down the street without our thinking they'd get run over or kidnapped. And that's not my anxiety, that's the neighborhood.  

THE NEW PLACE...We have nice neighbors who aren't too close. Our backyard is very large, more long than wide and then goes down into the woods. Its conservation land so no one will build or encroach. Its almost magically quiet with the only sounds coming from various birds. We have deer, turkeys, rabbits and other critters who come to visit. Nov one knocking on the door and the kids can ride around the neighborhood, walk down to a friends house or to the bus, and its all safe. The anxiety level is down from a constant 9 to a 1. Its an unbelievable difference in the actual quality of life. Instead of dreading every noise and waiting on the edge of my seat for the next thing to happen, I'm chillin' with my dog on my lap looking around for things to do.

Stress is a killer. I have posted about it before and I'm sure I will again. 

I started making things to sell on line ie opening an Etsy store. Cant keep up with that either! I was doing well but I got VERY, and I know fellow online sellers no matter what site you use can sympathize, I was getting very annoyed at the people purchasing things an not leaving any feedback. I know feedback is great for myself as a buyer. If I see other people happy I am encouraged to buy. If I see low stars, low purchases, even though I know it could be someone just starting out I get hesitant. It looks like I have sold very little and I feel its not worth all the effort when people take my goods and not post feedback. I have let my listings expire as of late and I feel no motivation to add pictures of the new things because...well...shipping and communication to get no feedback...again it feels pointless. Its not about the money. You want someone to say "hey good work and THANK YOU".

If I get in there and spruce it up I will provide a link soon. 

           

 

 

I have had painted wine glasses, pre-made scrapbook pages, awareness bracelets, awareness magnets and other assorted awareness items.

Im done training (been a while now). NOT forever I hope but...Macros, calories, injuries, demands, late nights on the pc and memory issues are not a good mix at all. I do not have enough energy  to fully maintain at the level I should be able to and that effects my confidence which effects how I carry myself. I still give advice, tips online and occasionally a paid workout but as for clients, I just cant. Do I feel like a failure? Some days. Other days I remember this is my life now. Adapting and changing as the fibro does good or bad, is the way it has to be. 

Started Crossfit. Loved it 10 minutes in and I was hooked. Those who know, know. Its not like anything else. Its just not. You fell strong, confident, you carry yourself differently and feel like you have a secret. Like you're in a secret club for the cool kids and you cant tell anyone because you wont be cool anymore. But you do tell everyone because its so great you want to share it. You want to recruit people, you want to share the high and be proud you opened up new doors for yourself and a friend. It was scary, I was intimidated, but I took my scared arse in there and MADE myself get through a free class....Immediately paid for the next month. Its one of the best things I ever did. You have to try it at least once. 

The only picture I have there, I never bring the phone in #nodistractions

Had surgery on my right shoulder. Had issues for a while, tried everything I could. Ice, heat, magnets, electric stimulation, massage. The doctors of course  ran me around the bases. PT, cortisone injections, ultrasound blah blah...finally I demanded an MRI. Diagnosis: torn labrum , also a little of the  bicep! WTF!! PT wasn't going to fix that. GGRRR

Lets count the number of times I was asked ..

A: "Did you do that a Crossfit?" and B: "are you a pitcher?"

It wasn't as bad as they let on when they finally got in there, "supposedly" but had to scrape the bone and the amount of pain I stayed in for as long as I did after was no joke. That was April. Its now December. Still have pt and although some things are great, some of the important things are not and I am very displeased to say the least. The physical therapist also said "by the way, did they tell you you have arthritis in that shoulder?" BALLS!!! No "they" didn't. She wanted to make me aware that even with surgery and pt I may still be in some level of pain from the arthritis so not to get my hopes sup. FUN STUFF RIGHT? Ever feel like you are surrounded by idiots? My main goal is not 100 percent, but I want to go back to crossfit. Right now I feel like I cant carry my weight. QUITE LITERALLY!!

I think that's enough catching up for now. My brains will explode. I have still been reading, researching, and experimenting. I was given a copy of a book about cfs and fibro to read before it was to hit the shelves (which it has already) so I have a review on that, some supplements and some other things. Wow, Im still amazed at how being so extremely tired  all the time can set you back a millennia.

"But Exercise Makes Me Feel Worse"

"Exercise improves your pain threshold,” says Trent Nessler, PT, DPT, MPT, a vice president with Champion Sports Medicine in Birmingham, Ala. “With chronic pain, your pain threshold drops -- in other words, it takes less pain to make you feel more uncomfortable. With cardiovascular, strengthening, and flexibility exercise, you can improve that pain threshold.”

“Exercise improves your pain threshold”  

Lets think about that for a minute. 

Ok minutes up!

Who wouldnt want to feel just a bit better if they could just from getting a little exercise? 

The first thing you think is "when I exercise I feel worse". 

The next thing you think is "I am so sick of people telling me to exercise!"

(Its ok, I dont get offended)

But you have to realize the only reason people say it all the time is because generally its true. NOT always, but generally.  (I'm not talking about those who think exercise and a good nights sleep will cure you!) Just as changing your diet "generally" helps. I always point out that I am never ever a one size fits all person. I don't like blanket statements because I am smart, experienced and open enough to know that not everything works the same for everyone. 

There is such a thing as exercise intolerance. 

Impaired oxidative phosphorylation not only causes muscle fatigue but also muscle cramping with or without tenderness, or a feeling of extreme heaviness in the muscles. These symptoms are especially severe in those muscle groups being used, and patients often complain of discomfort in the legs or even muscle spasms.The discomfort may be felt immediately following the activity or later on, waking up the patient from sleep. Following more prolonged or intensive activity, the pain or heaviness can persist into the next day(s) despite rest. A subset of patients has pain associated with elevations of CK and intensive exercise can lead to frank myoglobinuria; there may also be associated lactic acidemia (DiMauro, 1999).

With that said of course if you are going to hurt more you are not going to want to do it. And it takes a special determination to do it anyway knowing what lies ahead. One of the most common statements you hear from a Fibromyalgia/ME/CFS patient is  "I'll pay for it later"

Its part of our permanent vocabulary. But lets put this in perspective.

You drink foul tasting cough medicine because you know it will help your coughing. 

You take antibiotics when you dont like prescriptions because it will help your infection.

You spend $500 dollars on a brake job because you know it will save your life. 

You do so many things as a parent that "hurt", because you are trying to shape, protect and teach your child.

Something we are very guilty of is doing too much because we dont like to say "no" to others. We KNOW its going to hurt, but we do it anyway. We just decide to "pay for it later".

Well, a permanent part of my vocabulary is "you are in pain anyway". You are in pain anyway so why no make it count for something. Why not endure just a little more pain now, to prevent even greater pain down the road? I don't say that off the cuff, I don't think "if I can do it you can do it" and  I don't think its easy. 

BUT..aside from the abundance of articles, studies and "opinions", you do experience this yourself that....

The less you move, the more it hurts. The more it hurts the less you move.

 So it becomes a self fulfilling prophecy. It hurts so bad you stop for a while and when you try again you want to die because it nearly kills you. And that's real pain, not an excuse to avoid exercise. 

The first "exercise' you should do is with your fingers! Do some research. Look on the internet, ask questions in support groups, read blogs and see what types of exercises and modalities seems to have the best results.  Make a list and then rate them in order of effectiveness. 

#1 Would be the most common, popular or least painful to incorporate. #2 Would be the next most common answer. 

Example:

1. stretching

2. walking

3.yoga 

(certain types, not the twist in a pretzel type!) 

etc....

Then, call the doctor and make an appointment to discuss the best way to go about getting some exercise. Bring your list and your research. DON'T FEEL FOOLISH. Most times coming armed with information will make them take serious, and provide specific answers. Don't let them tell you "go get a trainer", or "just start walking". That's not a plan. 

A plan is a detailed proposal for doing or achieving something, OR an intention or decision about what one is going to do. You need to decide what to try first, at what intensity level and how often. It might be to even get a referral to a physical therapist or exercise physiologist to get the proper advice and program.

For example, If you decide to walk you shouldn't just walk 2 miles after having done little to no exercise. You could cause a flare and/other reactions. Graduated walking is best.  Decide with the doctor based on your condition how much and how far. Starting with only 10 minutes (any pace) 3 times week for 3 weeks. Then try to increase it to 15 minutes or just try walking a little faster.Then 4 times a week for 3 weeks (or simply increase to 15 minutes still 3 times a week), and so on. If it does not agree with you you will know right away. Maybe you have to cut back to 2 days, walk slower, or move on to the next thing on your list.  

If you chose yoga, start with only one class in a week. Wait and see how your body responds for the next few days. (Try looking on Meetup , facebook,  or local papers, gyms and studios for a free class in your area before you commit to the cost of a full session in case its not for you. A lot of studios also offer a drop in rate to you can try just one class) Its also not a bad idea to talk to the instructor ahead of time via phone or email and make them aware of your medical issues and what your goal is. They will be able to give extra instructions for your benefit, provide blocks or straps for you to modify some of the common moves so they do not cause you great discomfort and make sure you are in the right class, or tell you which one to try.  In my experience, Hatha, Svaroopa and Restorative are the top most effective types for Fibromyalgia and whole body pain related issues. Especially for beginners. 

The key is to find something that works for you. Don't judge  yourself or compare yourself to the others, especially "healthy" people around you. Each person has their own challenges, progresses at their own level and are motivated by different reasons. I beg of you to keep trying. Just keep trying and don't get discouraged by setbacks. 

I actually took that word out of my Rolodex because it has too much of a negative connotation. It's not a setback, its simply a communication from your body. Just as a dog has to bark or a baby has to cry to communicate, your body has no voice. It has to tell you when you have pushed it too hard somehow doesn't it? Its just a message to "slow down', pace yourself and in some cases when you seem to get no feedback, its actually saying "hey that wasn't so bad! you can probably do that again!"

1. • tention or decision about what one is going to do.

Matthew Jones, researcher at the University of New South Wales who led this study   said “the results remind us that the longer we stick with an exercise program, the less physically discomfiting it will feel, even if we increase our efforts ... The brain begins to accept that we are tougher than it had thought, and it allows us to continue longer, although the pain itself has not lessened.” (A less technical article that translates the study can be found here.)

*This is not to say you will be healed, that you won't or don't need additional therapies or medications. Exercise it is just an additional tool for your arsenal to help combat pain. Always consult your doctor before starting any exercise program. 

The Secret to Joint Pain Relief-Exercise

A Beginners Guide to 8 Major Types of Yoga
Yoga Diciplines- Different types of Yoga
Relieving Pain Through Exercise-Not Medicaion

A Note From Your Trainer

I think i have said this before but being a trainer is a lot like being shrink. I wish I had a degree as a psychologist because I could charge A LOT more per hour. I just have to vent that it irritates me that people don't accept help and do what they are told. If you find it hard refocus and get back at it. Don't whine about the pain, we all have pain. Your human body has no more significance than my body. It all depends on what you put into it what you will get out of it. If you accept you can, then prove it to yourself. Once you see it you believe it.

You can have every and any excuse to have been held back physically, emotionally, intellectually, or spiritually. Weather its parents , friends, abuse, accident or tragedy...there are too many to list. And they are valid most of the time. I accept and understand and don't judge. I have my own demons I am still trying to work out at 41 years old. But I am trying to work them out. I am not sitting around saying it hurts, my mom made this way, I don't have enough money or no one understands me. And I have come very far in my short adult life. And I know if I did not accept responsibility for how my life is GOING, rather than blame others for how it went, I would be sitting in the bed everyday on heavy medication, old bitter and angry. And that is unacceptable to me. If you r doctor, friend, teacher, shrink, boss, neighbor or TRAINER offer help TAKE IT!

If you have been given the opportunity to turn things around in a positive direction, and if you have been offered the information to make significant lasting changes for the better, and you have a chance to move past what has been dragging you down, TAKE IT. And if you don't take it you have no one to blame but yourself. Not many people get that chance and even fewer get it twice. TAKE whats given to you and make the most of this life. You can make a difference.You don't know who is watching. So if someone offers you help don't give excuses, give results.

You are stronger than you think, and can do more than you know.

Or be so kind to let them know ahead of time you are not willing to do the work so they can move on to someone else who needs and wants the help.

I Am Fibrotastic!

In my early 20’s I became increasingly more fatigued than I had previously been. My concentration was off. My muscles were sore all the time. I did not sleep well, and felt as though my life was always moving too fast and it took all my energy to keep up with it. I was trying to juggle a small child, college classes on and off, parties with friends on the weekend, and I worked. Sometimes multiple jobs. So when I looked for a reason why I felt the why I did, it was obvious. The stress of being a young single parent and all the responsibilities that come with it was always number one on the list. Working at a health club, babysitting weekend nights and staying up all night were all next in line. I went to counseling to learn how to manage my life and although somewhat helpful, I was told I had Adult ADD, that I was bi-polar, and had manic depressive tendencies. No thanks. I didn't like that but what can I do. They are the doctors right?

 Don't they know best? After trial and error for years with multiple medications, lets face it TONS of medications and lifestyle changes nothing ever really improved. So I gave up.

In my early 30’s when my second child was a year old I came down with meningitis. After this episode I never seemed to fully recover. Widespread body pain and fatigue were ruling my life. Most days I was forcing myself to stay on my feet and get through the day, get chore done and not look weak or lazy. I was now married and had more responsibility and could not figure out why life seemed so unfulfilled. Yet another year later the signs of meningitis reared its ugly head and I was back at the hospital for a second time. Who in the world ever heard of such a thing?! By now I think I am a medical mystery, an anomaly. I am messed up! I began to do less and less of things I enjoyed, became anxious in certain situations, withdrew from friends. I suffered from injuries and winter illnesses that seemed to never want to heal or go away. Headaches and pain were at an all time high. I finally decided something was wrong with me and it must have been the meningitis.

I searched the internet, read books from the library and although I realized I do in fact have ADD, there were too many other possibilities out there for me to diagnose myself with anything. Finally I decided I didn’t know what was wrong with me but I knew changing my diet would be nothing but helpful. I did that and no change really made much of a difference. In between numerous doctors’ appointments with dismissive answers, my in home daycare children, foster children and my own third baby, I ended up having to scale back, and eventually quit everything to just sit home and be sick. I felt like a failure and a loser. I felt weak and ashamed that my body could not keep up with everything my heart wanted to do. I gained weight, lost hope and became very angry. In seeing a Rheumatologist for another injury, he quickly changed his line of questioning, did the tender point test and diagnosed me with Fibromyalgia. I went home searched the internet to find out exactly what that was and then had my greatest A-HA moment in years. I was so  happy to have a diagnosis that validated me. Now I knew what was wrong all these years! I was not crazy! I was not lazy. I was not being a drama queen and I WAS NOT making it up!! Happy happy joy joy!!

Then I cried. For a long time. Like days..in the shower, in the car, in the bed....It seemed I was doomed to a life of pain with no help or cure in sight. The emotional fallout was much greater and complicated than I can ever put into words.  I ended up on disability and just plain miserable.

At 39 I decided to try diet change again but his time be more strict. The information was mostly incomplete and contradictory and the only common denominator I found in hundreds of hours of research was diet. Maybe helped a lot or a little but it was obvious that was a factor. No artificial ingredients, no caffeine, gmo, hfs, etc. and as little processed foods as possible. As clean as I could afford. I even cleaned out the house of chemicals, hair products, tore up carpet you name it. I went all out. This time it made a noticeable difference. Right away I felt like I had a little more energy, and I was less heavy, angry and also has fewer digestive issues. I felt good enough to start running and working out again, where I had done in the past, but then it became too painful. Shortly after, bringing my youngest to preschool I met another mom there who was a doctor. We got a little friendly and after a few of my side handed comments like “I’m always so tired” and “everything hurts” she  said she would love to see me (as a patient) and try to figure out what was going on. I declined for a while. Beside the fact that it had the potential to be awkward, I was suffering from doctor fatigue. I did not want to go through that anguish of hearing “its tendinitis, I have to lose weight, it will go away eventually, or all new moms feel like this”. Eventually winter had destroyed me yet again and I figured what do I have to lose?

She did testing no one had ever done before. I had Fibromyalgia for sure, but also some overlapping Chronic Fatigue Syndrome, I was hypothyroid, and had Adrenal Fatigue. Other side conditions from the high stress and wacky hormones also developed or had become worse, like TMJ, depression and anxiety. Throughout this process I discovered it all led back to the birth of my first child. I had been living with this for an astonishing 22 years, all the while it was getting worse with every stress or trauma. She put on supplements specific to my needs based on those tests and a thyroid medication. I exercised a minimum of 30 minutes a day, 5 days a week. It hurt. It was not easy. But every day I could do a little more and a little more. Sometimes I cried while I ran around the track, other times I yelled at the tv and cursed the maker of the dvd, but my it was helping me. I could see it and feel it. And combined with the healthy diet I felt like a human again. I decided to be in control. If I could not cure it I would mold it. I was in pain anyway, so I decided I would benefit from it by building a stronger body for it to live in. Feeling sore from a workout is mentally and emotionally more empowering than feeling the pain from Fibro itself.

 Although there are “flares” and bad days still, they are happening less and less often. Overall life is much better. I have less pain and less depression. But those days are fewer and fewer. I was able to start working and start a support group. I am running and participating in obstacle course races and feel great most days. I started an organization for people with who suffer with chronic pain who also stay as active. They get together for events, give support, suggestions and share stories of accomplishments. I never would have been able to get any of this done without educating myself, having the support of a good doctor and a supportive family.

My advice to anyone is to know you are you are important. Your life matters. No one will fight for you as hard as you will fight for yourself so do not give up. Keep looking for the right doctor, vitamins, or exercise. Try everything alternative as well as modern. Know it will most likely be a combination of things that help, just as it is a combination of things that are making you ill. It may take months or years but it’s worth it. You have to form a front of every level. Physical, emotional, mental and spiritual so it has no chance but to back down. I know it hurts. I still cry. I still curse the gods. Its okay.

JUST DON'T GIVE UP!

Don't Worry Be Happy!

Sounds easy when its in a song right? Harder to practice in real life. But you can. You can practice and you can be happy. Not every minute. Its real life for crying out loud..but more than you are now!
Okay this is my speech for the day because I am just so moved to do so..I posted this last night on a couple of my pages, and got little response.

" It is important to remember that your own thoughts and beliefs do manifest themselves physically, and can affect your overall health and mood. 

Start changing your mentality today by starting your day off with positive imagery. 

You can also ponder on the many ways in which you can use your own gifts and talents each day to better the world and create the change you would like to see in your daily life."    

This is true. Like being nervous can cause you to sweat or have to pee! Like getting embarrassed can cause you to blush! The chemical makeup of happy tears are DIFFERENT than tears of sadness! The list can go on..you get the point. There are proven physical reactions to your emotions. 

That reminded me (even though I don't like to make generalizations), it is in fact true, that there are majorities of people in the general populous that act or think a certain way. I have to say not a lot of people are PRO active.This is not for the people who are very engaged in their health and stay informed educated and try everything they possibly can. There are those of us who do EVERYTHING and then some. Kudos to you all!! But there are those who are NOT.  Those who are in real true pain, so bad they can barely function. And do nothing about it. Those are the ones who make me very extremely sad for their future, because they dont even think they  have one. They have lost hope and  are too tired to do anything except breathe.

 They are REactive. And so often I hear "I cant, it hurts, you have no idea..." And I get it. I of all people get it. But you have to be proactive if you want to have success. Especially us with illness. Quit smoking, skip that soda, don't let people get you angry, learn to let it go and take your emotional and mental health into just as much consideration as you would a child who fell off a bike.If it hurts don't give up just do less, do it more slowly or less often, but it will ALWAYS hurt if you don't try at all. Do you need those oreos?  Do you have to get revenge? Do you have to turn your stomach over things you cannot control? Not really. Just realize for everything you do there is a consequence. Weather its an extra 3 pounds, a flare, prolonging an argument with someone, stiff neck or a missed appointment and now you have fee's that you cant afford to pay...there are physical reactions in your body and you need to do whats best for your body. Make the best decision for you and be happy with it. Use your ability for independent thinking and use those emotions to better yourself. Don't take on the negative energy from those around you. Release it back to them.YOU HAVE TO. you owe it to yourself. So walk 5 minutes, stop sucking down the diet soda by gallon, read about emotional healing, take a yoga class, empower yourself to get a new doctor, make that call you have dreading to make, forgive yourself and don't expect perfection, ......DO WHAT EVER it take s to move FORWARD! DO NOT GET STUCK!! YOU ARE NOT YOUR ILLNESS!! YOU ARE SO MUCH MORE!!

Suffer from chronic pain? Staying active anyway? We would love to meet you!

Are you a runner, cyclist, or competitor in in a sport? Do you have chronic pain from Arthritis, CFS, ME, Pots, Fibromyalgia or any other pain condition? It's sometimes hard for people to understand that what you do may be twice as hard, or take twice as long. Some may never grasp the sheer determination  and energy it takes just for you to keep up, never mind exceed any goals you may have set for yourself. Sometimes feeling guilty about being able to do so much is one thing I struggle with personally  I see every day people who can barely move and are in great pain and I hurt for them,and think of them all when I am running. I have worked hard for it, sometimes to point of tears, literally. Crying and running! But in the midst of feeling so proud is some sorrow and guilt,  knowing others may never get there. But each of us has our own struggle. And I am finding that being active makes my struggle  a little less painful and a lot more fun. We are looking to connect  with others in the same position. I started RunningWith.org with my husband to try to bring together others like me, either to race together, communicate about struggles or just to know we are not alone out here on this journey.Whether you are in Texas, Florida, Canada, Massachusetts or anywhere we would love to connect with you and hear your story. Hear how you manage physical fitness in the face of chronic pain. What motivates you, how do overcome the temporary setbacks?
Find us. Join us. We would love to meet you!
Dawn