Join the Conversation on
262 people
0 stories
22 posts
Explore Our Newsletters
What's New in
See full photo

Cross Road Blues

Considered by many to the first ever rock star, allow me to describe some of my healthcare(less) journey, by borrowing a few words from master blues artist Robert Johnston: “I went to the crossroad, Fell down on my knees / Standin’ at the crossroads, tried to flag a ride / Didn’t nobody seem to know, everybody pass me by / Standin’ at the crossroad, rising’ sun goin’ down / I got the crossroad blues this mornin’, Lord / I am sinking’ down.”

After finally getting the results of the much anticipated private test I did, yesterday, it showed multiple issues, many of which were no surprise at all… but highlighted some issues, of which I had no awareness at all. Made worse by the fact that I do not possess the skills for an in depth understanding of the intricacies of hormone and neurotransmitter cascades, enzyme carboxylation and so on. Yet it is apparent this is where at least one major issue rests for me, and it seems from the literature I’ve read thus far, that serotonin syndrome is so little understood, just finding someone who is familiar with it, may be another mountain to summit, just to reach the starting line.

The private endocrinologist I consulted with over 3 months ago, has still not come back to me with the results of the blood tests he ordered, yet the hospital has sent me the bill for said tests. It’s clearly a dead end in terms of the support and interest he has in my case, yet my GP won’t do much of anything until I get his feedback which leaves me in the proverbial catch 22.

I’m sick, I’m always tired, and have been forced to treat myself for going on 5 months now, which the medical establishment has already weaponised against me by declaring my interest in my own health to be clear evidence that I am a hypochondriac seeking attention—to the point of manifesting test results showing conditions I could not have willed my body to produce, even if I wanted it to. And truth be told, I think if I could think my way into an illness, I probably would have focussed on something that would be easily treatable and fit neatly into their “I have hammer, therefore everything is a nail” mentality.

To my further detriment I did not opt to attend medical school armed with the prescience of mind to foretell that I would need this knowledge later, and there’s also the cold harsh truth that if I had boatloads of cash and a posh upper crust accent, doors I don’t even know exist would probably be being flung wide open for me because power respects power.

This in my opinion, is the cruel side of healthcare being both political and transactional: when you are considered wealthy, you get all manner of perks and doors opened to you—often for free. Yet when your means are limited and your need for this kind of assistance is greater; is when when this support would be most beneficial.

Tomorrow is another chance at this thing called life, but for today I’m feeling the Cross Road Blues because like Robert Jonhston; I feel like nobody seems to see me, everyone is passing me by… and the weight of it all has got me sinking down.

#WritingThroughIt #Thoughts #FunctioningDepression #Insomnia #MyCondition #ChronicFatigueSymdrome #Fibromyalgia #FibroFog #BrainFog #HealthCare

6 reactions

D&D and Doctors Appointments #Fibromyalgia #sciatica #Pain

It's been almost a year since I started seeing my rheumatologist, and unsurprisingly, not much has happened there. A couple extremely brief conversations (I clam up in medical environments) and some basic blood work.

I've spent my weekend playing a game similar to D&D (Pathfinder 2e) and planning out the character for the next campaign setting.

I keep trying to psych myself up to advocate for myself but I have no idea how to do that. I want to tell her what's new and continuing with my pain, what I've found that does and doesn't help, ask her questions about some things I've read, tell her what I suspect about what I've got, and request she test for everything she has thought in relation to my pain, so long as my insurance covers it.

Is that what I do?

I will be using my pain has gotten to the point I am a part-time wheelchair user hopes that it says "This is serious. I cannot function at full capacity." In fact, I can hardly function at all. I startle myself on days I feel well enough to hold a conversation and not just space out. I sleep all day....I can't even force myself to stay awake.

I even apologized to my boyfriend (whom I live with) for being "a useless lump" all day. I've been cleaning at night, when I can't sleep. I'm so grateful for him, he just gave me a funny look and said, "You don't have to justify yourself to me" like 'duh, pain is draining, of course you sleep a lot.'

Pathfinder, the ttrpg, has been helping me every weekend. I interact with our friends (over Zoom) and lots of laughter is had. It's honestly the highlight of every week at this point. It's too cold outside, people won't wear their masks, my state is out of control with the pandemic. Through Zoom, we socialize and have fun. We look forward to the future when we can all gather around one big table and play in person. This current game is the first I've ever played, so that's really an exciting prospect.

...As for why I'm sharing this at 3:30am... I sleep all day but can't sleep at night. No matter what I do.

#chronic Pain #Disability   #MyalgicEncephalomyelitis   #ChronicFatigueSymdrome


It’s beyond a bad day physically

My pain is unbelievably bad. Like last night it was so bad I couldn’t coupe. I just cried and cried. The one thing that keeps me going, that kept me going through last night, that keeps me going through today. Is the knowledge that one day I know there’s a rainbow🌈 at the end of this hurricane⛈. Things will get better. They will change. I don’t know when, I don’t know how. But they will. I want everyone to know that. It isn’t helpful now. Someday though you’ll find that it couldn’t be more true. Even with this knowledge I can barely coupe because of how overwhelming and debilitating my symptoms are. But I just wanted to remind myself😊💕 #elherdanlossyndrome #Fibromyaliga #ChronicFatigueSymdrome #anixity #Depression #mentalhealthawareness #Scoliosis

See full photo

Somewhere outside of Reno...

Welcome to our new members. I hope you're having a great day, a somewhat better day, or at least a day! 😄
Feel free to post the places you've been, the places you want to be, the places others have been, or new recipes for travel (armchair travel counts!).

#AdaptableTravelers #ChronicIllness #ChronicPain #ChronicFatigueSymdrome #MultipleSclerosis #CeliacDisease #Autism

1 comment

I’ve been diagnosed this week with Fibromyalgia and CFS. My GP has asked me to research some self help ways to aid during flare ups, can anyone help?

#Fibromyalgia #ChronicFatigueSymdrome

See full photo

Raised hot rash on 1 forearm. Photo does no justice. Help ? #Fybromyalgia #ChronicFatigueSymdrome

This is the 3rd time this rash has come up. Photo does not do it justice, quiet purple in colour, swollen and raised, hot and itchy. Has anyone had this?
Only on one arm.


not very interesting but very real to me

I guess I've kind of thought, ON SOME LEVEL, that my CFS was really a matter of needing more rest and down time. well, it's here-rest and downtime. I don't have to be anywhere or do much at all but I'm still exhausted. constantly. how can this possibly surprise me? I've been dealing with this for decades... #ChronicFatigueSymdrome #CFS #tired #exhausted


I suffer from extreme CFS. Has anybody found a treatment or medication that has improved your CFS? #CFS #ChronicFatigue #Fatigue #Fibromyalgia

I have had Fibro since 2009 and I still have not found anything that helps with Chronic Fatigue Syndrome For me it is one of the worst symptoms of Fibromyalgia. Very interested to read responses #ChronicFatigueSymdrome


can you tell me about #ChronicFatigueSymdrome ?

I’ve noticed a lot of #EhlersDanlosSyndrome people also have chronic fatigue syndrome as well. I think this might be a problem for me but my doctor blows me off when I bring up my tiredness because I take a medication that’s an “upper” for an unrelated issue. even so, on the days I don’t take it I don’t think it’s normal to be able to sleep 20 hours. I never feel like I’m “finished” sleeping if that makes sense, like if I was in a video game my sleep bar would never be full. if I don’t have anything to do and I lay down, I will fall asleep. sometimes this happens on the days I take the upper too, I used to be unable to fall back asleep if I woke up before my alarm to wee and took it since it was close to my wake up time, now I will still struggle to wake up...oddly I sometimes have trouble falling asleep during the week which is weird. it’s always a Herculean struggle to get up and moving. for this of you diagnosed with #ChronicFatigueSymdrome does this sound like that? it’s possible I’m way off base, but I feel like people’s experience will make me feel more comfortable that I don’t have this issue than my dr blowing me off.
thanks in advance.

See full photo

How did you know you had CFS/ME? I was given a “temporary” diagnosis of CFS...

How did you know you had CFS/ME?
I was given a “temporary” diagnosis of CFS, but I’m finding it hard to differentiate between depression symptoms and med side effects. But I spend so much time in bed because I’m truly exhausted.
What is the difference between CFS/ME and being tired all the time?
#ChronicFatigueSymdrome #ChronicFatigue #Depression