Why People with Chronic Fatigue/Pain Seem Able to Do Things they Want vs Need to Do!

This seems so simple that I'd not written anything about it specifically but it came up twice last month -- the difference between "want to do" and "need to do" when it comes to people who have chronic illness and low energy or are spending lots of energy dealing with pain.  

In September, I had conversations with two women that stood out in my mind as I was reflecting on my month of September; I'd take two days 'off' and gone to Telluride for a day of the Blues festival, camping with Karen who writes here as Karen's Korner so we could talk about some emerging projects that have come up related to impaired driving. In Colorado, medical marijuana was recently approved and the doctors who prescribe it were basically giving prescriptions to anyone who paid them their fee for a visit.  Here's a photo her husband caught of us 'kibbutzing' as Yenta would say, about OT-related work to do on Lumigrate.  (For the record SHE was ready to go 4 Wheeling with husband, I was about to change out of my camping PJs.... didn't want anyone to think that's how I went 'out' and about!  )

When I'd pumped fuel one day I noticed the state of Colorado was putting signage at the pumps about law enforcement focusing on drugged driving.  Most people who know I've had chronic pain have been surprised I didn't get a 'MMCard', but my personal belief is that I'm not going to die anytime soon so it's not good to get an addictive drug 'in the mix', and the past five years or so I've had really good success managing my pain using very few pharmaceuticals and using the concepts that I bring to light at Lumigrate for others to learn from. But with Lumigrate having a lot of followers with chronic pain who have been given pharmaceuticals intended for acute pain, along with years of working with every type of patient there is, practically, I'm keenly interested in this.  Particularly as it relates to driving and safety for people with community mobility. 

And let me tell you -- I had NO idea how popular Willie Nelson is today with the younger people! To see him for the first time 'live' in a liberal town like Telluride with a lot of his younger fans in front of me each smoking their own joints of what I presume is the famously strong new cannabis that's grown and sold today, I had a lot of thoughts going through my mind.  Not only did I LOVE hearing his amazing voice singing 'You Were Always on My Mind', but I had to appease some sloppy middle aged man's attempts to dance with me, and it just was a very odd time.  Definitely a memory I hope to always have, as it was 'an experience'! 

I was there, really trying to 'get away from it all' for a bit -- this has not been the easiest of decades for me so far, and here I was with big, big concerns for everyone's safety driving home and for their long-term well being.  It is yet another example of how every person has to have all the options in front of them and for the long-term be able to see what can happen: I was once their age and in college with a bunch of really smart and FUN young people, we were all relatively healthy and happy and hangin' with a big group of friends doing whatever substances were their 'thing' (which for some was nothing, others were doing alcohol, others doing illegal drugs.)  I've seen people who were using pot turn into different people than they had been before, whether recreationally (aka 'self medicating') or for PTSD (aka 'medical marijuana').   

Most people my age left during his peformance -- he was clearly not 'into it' and considering the stunning Colorado mountains as a backdrop and the crisp air as the first snow of the winter had fallen there the day before, I was disappointed.  I would hope back in the day when Karen's husband was responding to a fire he didn't show up with this kind of attitude; I don't believe I ever have for my patients/clients/customers.  As I see the bigger events I used to frequent turn over to those younger in attendance, I see my cohorts wanting smaller and more intimate venue and events where there are absolutely magical performances happening.  It's sad in a way, for me, as I feel it is just part of aging as much as it is the changes in society and values.  

Willie played the next night up here in Grand Junction at a cookie cutter convention center venue and apparently put on a very good and long show; I've heard he's like that -- it's one extreme or the other and nothing in between; 'they' say it's a matter of if he's stoned or not but naturally that might just be conjecture.  I've worked with music production for a nonprofit related to blues and it has a lot to do with how the promoters run the show and come through with what they have said they'll do or 'impress' or 'distress' the performer.  Suffice it to say that for all I went through to get there this year and get a ticket and all, I feel it is very unprofessional to do as Mr Nelson did and I hope if I'm ever as experiences at what I'm doing as he is and don't have a particularly good 'scene' going on, I treat my clients/'fans' better. 

I drank one beer the whole evening, as it was such a cold and sloppy walk to the potties or to get more to drink, plus he came on a little earlier than I'd expected him to and I had a good spot where I was standing on someone's tarp so I could set my pack down without it getting covered in mud. I ate a really nicely prepared BBQ sandwich and a few fries and hit the trail and road at dusk so as to reduce my risk of turning an ankle or falling; I don't see particularly well in the dark -- never have, and I have impaired sensation and responses from my extremities and I realized how 'middle aged' I have become.  

But with that perhaps comes some wisdom to share here.  You see, I truly am concerned about what I saw going on in front of me with the young people who I 'can related to', as in many ways I saw myself and my old group of 'homies' as they are called today.  My own 'drug of choice' when I was their age was alcohol, but not on a regular basis, just when we got together to 'party', which was usually one evening each weekend.  It was perhaps my first moments of intuition about my SELF and my health when I stopped alcohol altogether in my mid 20s and saw the improvement in my then 'faltering' well-being. That lead to concern from my mother, who thought I was going to become 'boring' (as she would die within a couple of years from alcohol indirectly), and a divorce as my husband wanted to continue on with the way he was living life, which was with a six pack a day habit replacing the six pack abs he'd had when he was a top high school athlete.

But I walked from the frying pan into the fire in my next relationship, as he had horrible seizure disorder and a teen aged daughter who was having the effects of a lifetime of the stresses that come from growing up in chronic illness; I also had grown up with a very ill father (total 'typical' fibromyalgia spectrum stuff - migraines almost constantly, fatigue, blood sugar/adrenal fatigue/hormone system irregularities) and mother (with the alcoholism and being actually hostile about my dislike of bathing in second hand cigarette smoke). 

The big crash to chronic fatigue occurred after that time and when I was eating really well, was active and in a loving relationship/married and was the happiest of my life to that point, but my mother had died suddenly and, to my father, 'unexpectedly', and he had become very needy and my way of helping something through that is not the same way as my family 'system' was inclined to deal with it, so for a while, I was just stretched too thin! I had incredible job stress, including breathing in fumes that were outgassing from new construction, and three sudden, unexpected and troubling deaths in my family, work, and friendships.

As time has gone on with all this 'health stuff', I've found that I have mostly gotten good at finding the balancing point that takes me the least amount of 'work' and allows me the most 'freedom' to just live a normal life.  That might not show by the way I write on Lumigrate, because what I'm writing 'to' and 'about' is for people who might be new at the process to related to something, as well as for my own personal reflection and reminder of where I have come from and am going and most of all where the BE-ing is at right this moment.  Which is with education related to progressive health concepts with a great amount of diversity of content.  

The women who I talked with last month were independent of each other and our discussion related to fibromyalgia and chronic fatigue.  Both had sisters who had one or the other, and both verbalized how difficult it was for them to understand the condition so I wanted to write something here for people who have family members with these conditions.  The one gal made a comment that I could easily imagine my family having said in the past: "She seems to have the energy to do things SHE wants to do."  So I will respond to that here.  

The other actually said she was sending the blog to her sister and was going to apologize because the family really hadn't believed the woman had 'really been sick'.  She had read a blog I'd written around the 10th anniversary of 9/11 where I was showing the parallel between the firefighters' increased incidence of some chronic illnesses compared to the same firefighters in the decade prior to 9/11, when they were being tracked for incidence of different illnesses.  I was trying to make two points with the piece: 

1. Since there was a big, dramatic event with lots of photos and film shot of the pulverized dust coating people and objects, it's very visual and so a good example of how it is someone might get sick from being around toxins and
2. Those images of dust are throwing the people investigating and with the illnesses 'off', and they're not thinking the way 'integrative medicine' embraces the whole mind/body/spirit of a person, and by only looking at the material and not the psychological stress aspect, they'll not be able to have as good an outcome with the heros.  

I titled the piece something like "What is YOUR "9/11"?" because I had, for years and years after I fell into chronic health problems that lead to horrendous chronic fatigue syndrome and later fibromyalgia, aimed my "light" related to "what caused it" on the thing that seemed the most obvious: an immunization I had in the early 1980s for German Measles which within a decade was on 20/20 on a Friday night when I was home without the energy to be out and about, for having the biggest class-action lawsuit to date been won proving it had caused autoimmune dysfunction in 5% of adults who received it.  Laden with thimerosol (a mercury derivativve/preservative), I went about looking into being tested for heavy metals and having them chelated out of my system, then having the handful of mercury amalgam fillings replaced in my teeth.    

This was beneficial, I'm happy to say, but it took a LONG TIME for me to do since I had to find the providers to do these things AND have a little extra money to do the things required (about $1,000 for the provider/expertise and testing and another $1,000 for the treatment, another $1,000 for the amalgam removal, all of which dental and health insurances won't pay for).  I have not had more than a long weekend of "RnR/vacation time" since I got fibromyalgia while I was in occupational therapy school and had a significant other/life partner who was defraying the cost of living for me.  (He did not provide health insurance benefits since we were not married and I had gone to a really good major medical policy to save money when I was in occupational therapy school as COBRA of my insurance from Colorado State University where I'd worked for a decade was quite costly, and my onset symptoms were like that of MS/multiple sclerosis, and the MRIs cost $10k, which was the amount of my deductible, the beginning of years of medical costs).  

However, over the years before getting 'the lead out' as I refer to it (as I was high in mercury, lead and cadmium, the last two of which were the result, per Dr Spurlock (see forum in this section on FMS specialists, he is an environmental medicine specialist as well), of the papers that tobacco or marijuana/cannabis are cigarettes/joints are rolled in.  My mother and grandmother smoked a lot of tobacco cigarettes in the house and car, and it was a VERY small house without good air circulation -- there was literally a cloud that was about head-height at the dining room table where I likely spent an average of four hours a day for 18 years.  My mother also set an example of alcohol indulgence that set me up for going to college and living in a huge dormitory at a well-known 'party school' and having my adulthood habits get started similarly to what she and her friends had modeled for me.  Is it the alcohol or the laughs that everyone has when they relax a little that's the reason? Fortunately I had one friend who was adamant about no alcohol and one night I hung out with her group of friends who were into drama at the University and also weren't big drinkers, and we walked around campus with everyone singing show tunes and just having the BEST time.  (And no holding anyone's hair at the end of the night! ) 

What I wanted to share here about my experience with fatigue and what I would chose to go and do or chose not to go and do, is one has to remember a time they were exhausted -- due to having the flu or chemotherapy, and imagine that this is how you felt for weeks, months, and sometimes years on end.  If a person puts energy out to something they 'want to do', it is essentially contributing to wellness, or inching a person a bit toward it.  If a person spends the energy to do something that's a 'drag' to their body/mind/spirit, then it works against wellness, which is 'contributes to the illness'.  

There were years, back in the timeframe that I met Karen and my health once again 'went down the drain' due to having too much 'weight' on the teeter totter and not enough 'uplift' -- I had a family member who required weekly assistance to remain in their own home and property in the mountains, and my family was expecting me to help every other weekend while they helped on the other.  I have a very small family and that was all the helpers there were -- there wasn't anything leftover to help me! My longtime friends all had big jobs and small children, or were out of the country in the PeaceCorps, and I'd moved to another city -- so they weren't even coming to my home to see that things weren't the way they used to be.  

After I was again 'better', one of my family members said to me how 'creepy' my home had become for a while.  I still don't think they ever 'got it', and with the family member who needed the assistance having died a while back, I thankfully am freed from the additional 'uck' from having people around who are not beneficial to my overall well-being. So I hope that by my having experienced this and sharing it here, it will help people understand their own family and friends who have chronic fatigue/illness and fibromyalgia.  

As for me with Telluride, it was worth it for me to sleep for one night camping and not get a great sleep, but since I've had one of my 'down the drain a bit' stretches due to not having a good enough balance of 'yay' and 'nay', it was many days to recover.  It took me a week to get the stuff out of my car and another week to wash and put things away.  But it was WORTH IT because I have the memory of seeing the legend of Willie Nelson live for the first time, I can say 'I went to Telluride Blues most of the past 10 years' and I got to spend a little quality time with good friends.  In Karen's case, a GRATE friends, as she writes here in the Forums.  Her husband, Don, gets a "Grate" from me by taking 45 minutes to get through the crowd in front of me to get this awesome photo!  Thanks Don, and Karen.  A retired fireman, I joke that he's truly The Fire Man -- you never have to worry about being cold when you camp with them.  Nor being hungry, they're wonderful cooks and bring fun friends too! 

Karen surprised me when I'd barely met her through a professional organization for driving rehabilitation experts when I said I'd been so sick I couldn't get to the doctor, and despite it being a long way out of her way to my house and that she worked full time in another city, she said 'Don't you ever not call me if you need something."  THAT is a 'good girlfriend'.  That was probably the beginning of a stretch of months and years where I literally felt I was being pulled down into quicksand!  And Karen was literally the ONLY person in those years who offered to help me -- not my 'family'.   So that's when I started thinking about what I now call 'FRAMILY'.  

This is not an 'indictment' but a statement of truly: My family of origin was simply not ever focused on what I was doing or what was going on with me; the habits established when I came along as the youngest many years after my sister somehow was to just push me aside and I learned to keep a 'low profile'.  

The greatest example of that which is totally funny to me, is when I was finishing up two grueling full time years in occupational therapy school and going off to internships in Denver which started in June, I had a phone conversation with the family member who was the main planner with me for getting together for something in May, and I said that one of the weekends was graduation weekend and the family member didn't register that it was MY graduation and went on to say what they had on their schedule that weekend.  So they didn't come to my graduation and I wasn't all that offended by it -- and later the statement was '.... it was YOUR graduation? ... I thought you meant it was the high school's graduation up there....'.  None of my friends or job in the past had anything to do with graduations, I'd actually not been able to work while in OT school, it's like medical school, it's all consuming. I'd not been to a graduation since my high school graduation eighteen years earlier.  

So after all I went through with learning disabilities known and not treated by my family of origin, having the setback of chronic fatigue in my late 20s and recovering from that, then getting divorced as my husband wasn't in favor of my going back to college to become an occupational therapist, I FINALLY graduated from the most competitive program at Colorado State University to get into and ____________  people in my family thought I was talking about someone else's graduation and they went on about whatever their calendars had on them.  

In closing, I encourage ALL people to look very closely at their family dynamics and open the communication channels for discussions and open your ears, eyes, hearts and minds related to each other.  This past weekend I went down and watched a FUNdraiser for the battered women's shelter where men ran short sprints in relay teams wearing women's shoes/heels.  "Run a mile in my shoes" was the marketing slogan.  My father had fibromyalgia and chronic pain, fatigue, migraines and when he died my relief was for him to be out of pain finally.  The same people who didn't ever 'get' me, clearly also never 'got' how much pain he was in.  I'd advocated for a long time for hospice to get included in the 'mix' of providers he had access to talking with and knowing about, and nobody seemed to 'hear me' for the longest time.  Today when I say something  about not thinking I'll live into old age, some people will say 'Oh, Mardy!', but if they could spend the time to learn what I've really dealt with my whole adult life related to fatigue and pain and all the costs (financially and on my body/mind/spirit), I'm willing to bet they'd 'get it'.  So please, do your part to 'get it' with those you care about.  

Thanks for reading! Live and Learn --- Learn and Live Better!! ~~ Mardy

Thanks to Karen's husband Don for the photos and it doesn't show with the fire pit as it is in the photo but he puts a whole new meaning for the word fireman!  Grins, and thanks "Old Guy", for everything.  Mardy