Home › Forums › Open Discussion › If you saw me wearing purple today would you ask why?
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May 12, 2015 at 12:49 pm #817407
JoBParticipantProbably not. I wear purple a lot.
But there are people who will wear purple today in support of international fibromyalgia and whatever they are calling chronic fatigue syndrome these days.
So if you know someone who deals with these illnesses or any other invisible illness.. today would be a good day to give them a hug…
a very very gentle hug
i will be out tiptoeing through my own personal tulips today but if you happen to see me please feel free to waft a gentle air hug in my direction.. like anyone else living with these illnesses.. i can use all the hugs i can get.
May 12, 2015 at 1:05 pm #824172
JoBParticipantJust a note… in spite of not being listed as the cause of death.. invisible illnesses are serious.. they do kill.
i read a statistic. The average age of death of someone diagnosed with chronic fatigue syndrome is 58. Considering that most of us have the basic blood test results of an incredibly healthy individual that is sobering.
today i turn 66. I have lived with the fibromyalgia portion of my illness my entire life… relapsing and remitting severe chronic fatigue syndrome since i was 15… and i still consider myself one lucky woman.
I have exceeded my sell by date. Too many of my friends haven’t been so lucky.
I no longer believe i will live to see a cure..
but i hope to live to see people suffering with an illness so intrusive that even their friends and family don’t believe they could still be functioning if they really felt like that receive the respect and concern they deserve from those around them.
far from being wimps.. it takes a real hero to face not only today’s pain but the certainty that today’s pain will likely only get worse and that there probably isn’t going to be any kind of quick fix on the horizon any time soon.
that takes a kind of courage that none of us would choose to live… not even for 5 minutes… if we had a choice.
i wouldn’t ask anyone to walk 5 steps in my shoes.. let alone a mile.
yet, today, if you see me out and about i hope it will be nearly impossible to tell that this well seasoned hippy chick is anything but joyous to be enjoying whatever the planet has on offer.
appearances can be deceiving.. but sometimes appearances are what we have to hang onto. if i have 5 minutes i will live that 5 minutes with joy…
and then.. i think i will take a nap :)
May 12, 2015 at 1:58 pm #824173
miwsParticipantMay 12, 2015 at 2:04 pm #824174
JoBParticipantMay 12, 2015 at 4:17 pm #824175
pattileaParticipantJob, as a fellow sufferer (in silence) I feel your pain. I know it hurts to hug, how do you explain that to someone?
Happy Happy birthday to you! and a special air hug too!!
I pray every night that I will wake up without pain!!
May 12, 2015 at 4:22 pm #824176
JoBParticipantpattilea (((hugs))))
i too pray we will all wake without pain.
it didn’t work last night.. but maybe tomorrow?
to be honest, i would settle for waking knowing what i could and couldn’t plan on doing tomorrow.
this illness takes the need for spontaneity too far
May 12, 2015 at 6:17 pm #824177
JTBParticipantWithout having read this, if I saw you or anyone else out and about wearing something purple, I would have thought, “purple, nice.” Definitely a power color, but one of deep strength, not harsh.
I marvel at how those who contend with fibromyalgia can avoid being overwhelmed by the multiple levels of distress. I’m very sensitive to how my body feels and am put off by anything out of whack, so I’m sure I’d require antidepressants just to begin to cope with it.
I know you’ve followed the research in this area. Sauna?
May 13, 2015 at 3:22 am #824178
JoBParticipantJTB
sauna doesn’t work so well for me though i have friends who swear by them. i haven’t tried the new infrared sauna though.
i do take a ton of hot baths.. and am always looking for a hot tub or steam room that does not reek of chlorine or eucalyptus…
and watsu.. i am looking for watsu
i don’t want much ;-)
May 13, 2015 at 3:25 am #824179
JoBParticipanti just looked up watsu again and this time a watsu practitioner in a salt water pool popped up..
i am going to check this out :)))))
JTB.. i can’t thank you enough for asking about the saunas
May 13, 2015 at 3:48 am #824180
JTBParticipantJoB, glad the question sparked a worthwhile bit of research. I had to look up watsu and noticed its genesis at Harbin Hot Springs for which I have found memories from my days in the Bay Area. If you find the experience beneficial, there are several thoughts that come to mind about promoting an increase in vagal tone that might be worth considering down the line.
I imagine you’ve looked into CBD (alone). I’ve seen some interesting research in other areas that might have some cross over with fibromyalgia. Must be a good reason we have receptors for those molecules.
May 13, 2015 at 9:47 am #824181
JanSParticipantI have had friends who have tried watsu…it’s sort of like water massage, but extremely gentle, soothing. JoB, I think your body would like it. Not as harsh or invasive as regular massage, more gentle than even Swedish :)
May 13, 2015 at 2:13 pm #824182
pattileaParticipantI am going to look into watsu also. I have had to stop any sort of massage. Even pedicure where they massage your calves. Cymbalta was life changing for me. Saunas do not work for me either. Thank you so much for sharing this information!!!
May 13, 2015 at 3:33 pm #824183
JoBParticipantJTB
a prominent fibromyalgia researcher once called successful support group leaders amatuer cognitive behavioral therapy practitioners :)
Although i am now retired, I did that work for a couple of decades.
I have also had the dubious pleasure of furthering the education of several cognitive behavioral therapists when it comes to application to these illnesses.
While i agree that cognitive behavioral therapy can help you find ways to cope with some of the challenges these illnesses create.. it isn’t a cure… coping better doesn’t lessen the impact of the illness.. it simply helps you to find ways to function in spite of it.
for instance, cognitive behavioral therapy won’t stop every step being painful but it will teach to walk “normally” so you don’t compound the problem by creating stress injuries with “maladaptive” behavior… that is.. favoring the body part that is in pain.
while that understanding can help a person dealing with this illness appear to function more normally.. there is a huge gap between outward appearances .. standard outcome measures… and actual improvement.
this is one place where faking it till you make it doesn’t work.. i can fake walking normally and make everyone think that wearing flip flops in the winter is a measure of my eccentricity but that doesn’t change the fact that i am not wearing shoes because the pain of the pressure they exert on my feet is that little bit extra that prevents me from bearing my weight.
if i want to be able to walk tomorrow I have to walk today no matter how much it hurts.. and it hurts a whole lot more than people think it is possible to hurt and still walk and talk and smile.
The biggest problem with CBT as it is commonly practiced within this patient community is the same one that so often frustrates patients.
Practitioners hear the word fatigue and they relate it to the fatigue they understand.. not that which can be the hallmark of both fms and cfs. They hear pain and they relate it to the transient pain they have experienced.. not the unrelenting unpredictable pain of fms and cfs.
They hear cognitive difficulties and relate it to the cognitive difficulties they have experienced or seen.. not realizing that when you have difficulty word finding or processing small numbers that memory tricks are not going to be terribly helpful.
CBT is too often practiced on patients without the practitioner having any real idea of the challenges actually faced by the patients.
They see a patient walking “normally” and assume that the patient can’t be in that much pain if it’s not affecting the way they walk.
just like people on the forum assume that i don’t have cognitive difficulties because most of the time i write with a reasonably educated voice.
they don’t see how long it takes me to construct the simplest post or speak with me on the days when i can’t find the words to locate those things that sit on my face to help me see… and if they should encounter one of my colorful descriptions substituted for the word i can’t find.. because i have learned to smile and laugh at my own failure to communicate efficiently … they generally find me charming.. they assume my care with words means i am thoughtful not that my mind is racing trying to find the words to put together a simple sentence.
unless of course they simply express their irritation at my overuse of ellipses and their impatience at waiting to hear whatever it is i might be struggling to say.
I much prefer that people find me charming.. but even that’s both a blessing and a curse…
Sadly..the obstacle that patients encounter is CBT is the same one they encounter pretty much every day when reacting with anyone who does not live with these illnesses.
what people see on the outside doesn’t accurately reflect the difficulties they are facing on the inside and there is no vocabulary beyond “i am in pain” that accurately describes either the intensity of that pain or the distress it causes in daily life.
I don’t know how to change this.
I can clearly see that this is a communication problem but can’t see how to make anyone understand that people with these illnesses are walking around and functioning with a level of pain, fatigue and cognitive deficits that regularly send healthier people to bed…
It is simply nearly impossible for someone to understand how you can function if you feel as bad as they feel when they can’t… so they fall back on the only explanation they understand.. that you must be exaggerating.
Unfortunately, in practice, cognitive behavioral therapy has taught me more about how other people hear what i say than it has about how to talk to myself about what i experience:(
if you have any ideas about how to change that.. i am more than willing to listen..
i am fighting through the complete lack of understanding of the actual challenges of this illness with a new medical team on the hill as we speak ..
when i fall over in their offices they see a sweet little old lady who needs to be pushed to comply with the therapy that they think will restore function.. not someone who doesn’t have a clue whether they will be able to stand in a dressing room today and put one leg after another into that pair of pants and who hasn’t been able to stand the pain of shoes since they started helping her to walk more “normally”.
Social Security retired me from disability this month.. i have aged out into retirement.
The only real change this creates in my life is that i now have a choice whether or not to agree to well intentioned “treatment” that can sideline my ability to function for months.
but even that is a catch 22. i get to decide whether to endure treatments that make me far less functional than i was when i walked in the door long enough for the practitioners to maybe figure out that they aren’t working and that maybe they need to try something that doesn’t work with “everyone” or forgo medical treatment altogether.
At my age that isn’t a good choice.. but the chances of finding a single medical practitioner that will remain employed in the medical system your insurance pays for and that won’t retire before you age out isn’t such a good bet either.
If you will excuse my impertinence.. i think the medical delivery system in this country really needs to find a good cognitive behavioral therapist to teach them to treat patients.. not charts :)
that would be useful.
May 13, 2015 at 3:40 pm #824184
JoBParticipantpattilea..
i will let you know how it works
JanS
LOL.. you may be driving miss daisey because i am pretty sure i can’t guarantee i would be able to walk out the door and find my way home after..
May 13, 2015 at 4:15 pm #824185
FranciParticipantHappy Belated Birthday!
Watsu is wonderful. I did it at Breitenbush in Detroit Oregon many years ago. I tried to find someone up here that was doing it back then and wasn’t successful. Hope you have more luck than I did.
May 13, 2015 at 4:34 pm #824186
JoBParticipantFranci..
i too experienced watsu at Brietenbush..
but that’s a bit far for everyday therapy:)
this is what a search turned up. I checked out the facility and it is supposed to be a salt water pool.
i will post what i find out when i explore further..
May 13, 2015 at 4:51 pm #824187
SueParticipantI tried watsu a number of years ago at m’illumino, but with a different instructor (who was a friend of mine). Really beautiful outdoor setting – there are stairs to the pool, in case that’s a problem. Yes, it is salt water – it has to be in order to make it more buoyant so you don’t worry about whether you can float or not. It was quite relaxing.
May 13, 2015 at 5:36 pm #824188
JoBParticipantSue.. i am hoping that salt water means that i will be able to tolerate the pool..
May 13, 2015 at 5:40 pm #824189
JTBParticipantJoB, I appreciate your comments about cognitive behavior therapy. It’s indeed striking that some clinicians are fairly insensitive to input outside of their area of focus. That’s particularly so when you’re talking about mind/body issues where the “scientific” knowledge is so limited. It seems you are facing a really challenging decision.
I have learned a lot about post concussive syndrome/symptoms in my marriage and perhaps the most important thing is realizing I can only have a glimmer of what it is like for someone who has to deal with a “hidden” disorder every day.
However, it wasn’t a typo in my earlier comment; I did mean CBD in relation to cannabidiols and emphasized “alone” because my impression is THC introduces an element that isn’t necessarily desirable. There is so much research going on in this area that the main thing I’m getting is it’s just getting started.
I started following this after a friend sent a Youtube link about juicing raw cannabis for purported benefits against multiple chronic inflammatory and degenerative disorders. The notion of someone having to harvest a small plant every day for juicing had obvious limitations. However, that led me to GW Pharmaceuticals who has some interesting products and a presentation about areas of cannabidiol research on their website. None involve fibromyalgia at this point, but I think you can see some intriguing overlap.
I agree with your comments about the limitations of the healthcare delivery system. My sense is you are probably very adept at “managing up” when it comes to getting your providers to work with you. However, I also realize that sometimes means determining some providers just don’t have the necessary temperament. And starting over is so involved. I hope you will be able to get this new group on board.
May 13, 2015 at 8:03 pm #824190
JanSParticipantJTB..thanks for bringing up CBD. I’ve been reading about the effects, and the fact that it’s different than THC, that it’s more of a non-stony help with inflammation, etc. Very interesting.
May 14, 2015 at 12:37 am #824191
JoBParticipantJTB..
thank you for another timely post.
i have about a month to use my medical marijuana prescription (before the law and the shops change) but didn’t have the brain cells to look up what i wanted to ask for.
i am not expecting this to be available through our local commercial dealers.. but maybe i am wrong.
THC laden marijuana doesn’t work for me… I am allergic to the smoke, sensitive to the smell and so far have been unable to successfully use either tincture (maybe because of the alcohol used) or edibles :(
maybe i can sort through the medical paperwork again tomorrow and take myself up the street.
May 14, 2015 at 3:22 am #824192
JTBParticipantJoB. If you heat cannabis, you’ll activate the THC. Most commercial strains have been bred to yield more THC relative to CBD. My sense is the most likely way to check out if CBD produces a beneficial effect would be to get a supply of green plant and puree it in water then strain it. That’s probably a big wa$te if you are using store bought product. If someone could direct you to a source of shake or even better, young plants that are deemed undesirable for some reason, you might have something to work with. The Youtube video on juicing raw cannabis appeared to be using a small plant, perhaps 1-1.5 feet tall and running it through a Vitamix.
The information at GW Pharm makes clear they are breeding strains that are high in CBD content and very low in THC. There are a number of clinical trials under way on some GWP products for managing symptoms of epilepsy and MS. Who knows if an enterprising researcher might obtain some samples for another application?
May 14, 2015 at 8:49 am #824193
JanSParticipantCannabis smoothies…now there’s an idea !
May 14, 2015 at 1:45 pm #824194
JoBParticipantMay 14, 2015 at 4:00 pm #824195
JTBParticipantJoB, I was curious enough to search and to my surprise, found LeBlancCNE.com appears to have high CBD strain seeds available in WA.
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