Chronic Living

I have never been one to reach out for support in my life; especially when I need it the most. When I am in trouble, I do just the opposite..I isolate myself, and cut off from the people I need the most! Do you think that’s a trait in people who suffer with chronic pain and depression? When I was first misdiagnosed with MS many years ago, I walked into a support group, spent about 10 minutes, turned around and walked right out. It spooked the heck out of me. I was afraid to identify myself as a “sick” person, and did not want to ask for help. I thought I could be strong, keep going, and after all, this is an “invisible illness” so who would know?  All these years I have been in a lonely boat called “I am strong and I can handle this myself“. BAD IDEA!!!  What hogwash!

As I look back on all that I could have availed myself of, I feel so foolish.This one single decision has probably cost me more growth, comfort, happiness, and love than I could have imagined. I did not join another supportive resource for years. I want to make this very clear, that this was very wrong, and I now see the error of my ways.  I am only telling this story in hopes that someone who is newly diagnosed or having a chronic issue with little support, will read this and connect with someone, or better yet multiple avenues and ways of support online and off.  Here’s a list of the 100 best Fibromyalgia & CFS blogs to get you started.

NOBODY can support you and be there for you like people who are going through what you are. Your family and friends can only understand to a point. Unless you have felt the pain and lack of sleep, fatigue, digestive issues, depression, migraines etc of fibromyalgia, you really don’t know what we are going through. Connecting with fellow spoonies, is like finding old friends, who are your sisters and brothers. Listening to our stories and looking at us is like looking in the mirror of your own life, which can bring you tremendous comfort. Even our doctors who see chronic pain patients by the dozens every week, can’t truly relate. Conversely, you do not know what part of your own story might touch another life in just the right way to make a major difference for someone else. I think that’s something important I’ve learned recently too.

I think there’s a misconception about support groups and identifying with your condition. At least in my mind and some of the  (very misguided) people I believed 20 years ago, I was warned of “identifying myself” as a sick person. I want to talk about this. There’s a big difference between letting your illness consume your identity, and your world, and accepting your condition and dealing with it honestly. I was afraid of taking ownership for my illness because I felt like I was responsible for it or something. Every time I heard myself say (back then) “I have MS” it was as if it was someone else saying it, and not me. When I heard myself say it, it was like I was saying ” I own this” and I was not willing to accept it. This was working AGAINST the wellness process..it’s called RESISTENCE. Even if I did have Multiple Sclerosis, the fight and denial I was in was causing me more stress and pain than necessary. It’s kind of ironic, something was telling me that years from then I would find out that I indeed did NOT have MS, but it was a very wrong way to go about it. The symptoms are fairly similar, and it did not change much to go through all that emotional “stuff the feelings down” crap! The whole point to this story is that I stopped myself from getting support, education, and resources. I simply went to the doctor, took the  meds, and went on with life or a good 10 years. Thank God I snapped out of it!!

Eventually I learned about the wonderful world of natural health, and through that met tremendous people to support me, and for myself to support them. When I moved to Salt Lake city in 2002 I met a new doctor who diagnosed me with fibromyalgia, and I began to slowly change my thinking. Remember that you are NEVER alone. There are resources all around us to fill up our “tank” with love, comfort, education, information, and support. Sometimes we just need a listening ear..or just to vent!!

There is a private  facebook group I found recently that is the perfect place to talk about anything you want as it pertains to chronic pain. It’s completely private, and cannot be viewed by the rest of facebook. Its moderator Liz Hall is a loving, compassionate, pain sufferer herself, and she welcomes you with open arms. She also runs a fabulous blog HERE. Like this PAGE or  Just message Liz Hall and ask or an invite. Please tell her that I sent you.

There is love for you everywhere!

I welcome your thoughts and comments below. Do you belong to a support group or forums?

Lots of Love,

Your Friend

Laura

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Vitamin Packaging

Can it Be.. My Vitamin D?

In the last several years my doctor has taken great care to watch my Vitamin D levels, and many times when they are low there seems to be a correlation to a heightened pain level as well. Consequently, I took some time to do a little research to find out just why vitamin D is so critical in keeping us healthy as chronic pain sufferers.

Recent Research

The role Vitamin D plays in our health has become far more important as recent nutritional research has emerged. The media has underscored reports that have caught the attention of individuals who might not otherwise supplement this nutrient in addition to a daily regimen. The reason for this is that in past years, people got plenty of sunshine, which is the primary source of D, but with the certainly well founded  fear of skins cancers, folks are just not out in the sun, or are using sunscreens. So wouldn’t you think this would have an affect on our vitamin D levels? You bet!! Vitamin D is responsible for many important functions in the body, like cell reproduction, insulin production, heart health, healthy bones and teeth,  and immune function

Research has shown that low vitamin D levels can cause muscle pain, depression, fatigue and weakness, and that 25% of those with Fibromyalgia, Chronic Fatigue Syndrome and ME, have low vitamin D levels. Supplementation may be extremely beneficial at lowering pain levels over time. One study showed that people low in vitamin D needed twice as much narcotic pain medication as those who were non deficient.

The observed improvement in the overall condition of fibromyalgia patients using vitamin D indicates a strong connection between the disease and the function of vitamin D in maintaining bone and muscular health. One theory I found was that the role of vitamin D in contributing to the development of fibromyalgia is thought to be rooted in its metabolic function. Vitamin D helps in the synthesis of parathyroid hormone (PTH) in the body. The parathyroid hormone serves to extract phosphates, especially calcium phosphate, from the bones. Combined with other factors, a failure to extract adequate amounts of phosphates from bones can lead to fibromyalgia. In case of vitamin D deficiency, the body is depleted in parathyroid hormone and hence an abnormal retention of phosphates in the bones may initiate a march toward symptoms of fibromyalgia.

It’s recommended to take at least 1000 iu per day for a normal dose.  It was originally the FDA recommendation of 400iu, that has been shown to be too low in many individuals. Your doctor can give you a simple blood test, called a “Vitamin D 25-OH Level” to see if you are deficient, and the number should be somewhere between 30 and 100. Just to give you an idea, when I’ve been at my worst in the winter, it can be as low as a 17, so I have to take a prescription for vitamin D to get  my levels up for a short time, and then I take 5000iu per day. Ask your doc what they suggest for you. Buy Vitamin D3, not plain “D” as it is much more potent and complete.

Creative Commons License photo credit: colindunn

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When I wrote the first few words in the title “How Chronic Pain Affects Family”, an immediate lump came to my throat. I decided to add the second part..”The Emotions of It All” because the last 20 plus years for me living with fibromyalgia has been nothing less than an emotional roller coaster for each member of my little family unit. It has indirectly affected my other family members as well, but there is nothing that can compare to the dynamics that exist in day to day living as a family.

My children have always been there for me, and I for them, but at the same time I have always felt like my illness has robbed them of something, particularly time and activity with their mom. I did my best to make the school plays, and parent-teacher conferences. I baked and staffed the bake sales, and even volunteered a few times as a room mother. Alas there were those times when the pain was so bad or a migraine prevented my participation. To outsiders, who could not “see” anything wrong with their mom, I was quite the flake. I am sure that took a toll on the kids, and their dad.

As the kids got older, another child came along which was a true blessing in our lives! She actually helped to bring about a healing in my body for a long period of time. My doc at the time thought it was all those great pregnancy hormones. The pain did come back with a vengeance when Rachel was about a year old. My two older kids, and mainly my oldest daughter took over and filled in where necessary with keeping the house running. Over the years we have done our best to substitute the time with activity that I am able to do. They played games and cards on my bed with me, and we got very good at cooking and baking together with me sitting on stool in our kitchen. I am afraid my son, the middle child was robbed the most, and I am still working on mending that wound. [click to continue…]

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Practice
After  ignoring my body for so many months, the tender stretches I performed this morning while doing my third day of Yoga practice, brought me to tears. I knew I had positively reconnected with the will to get well, and the will to love my body again. Although I have a very long way to go, I am feeling better and better every day. The nutritional changes that I have made are making a difference in such a way that I have lost my desire to consume the things that don’t serve and nurture my body.

Do you know what it’s like to completely disconnect from your body because you are so angry at it? This is very common for people with a chronic condition. Our body becomes a “thing” for a time, and we want to almost rebel against it, because it’s done us so wrong! Some of us punish our bodies and continue to do the things that are completely contrary to getting well, because we’re so disgusted with years, and years, and years of the same old, same old…what does it matter after all? Of course that totally faulty thinking, as every fibromyalgia or autoimmune patient knows.Many patients are compliant from day 1, and I envy their patience!  [click to continue…]

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