Just wanted to introduce myself! I’m Jody, a fellow #Potsie I am 56 yo, however I feel so much older as I have a total of 15 dx chronic diseases. Unfortunately, a little more than 2 years ago, I was fainting just a little too much (lol… 🤣), as well as having "gray outs", and my wonderful doctor told me that I could no longer get behind the wheel of a car!! It’s really nice to have to depend on your 85 yo mom to drive you around (who we are not sure if she should/should not be driving distances & freeways) to doctor’s appointments, etc.
#livinglifeinafishbowl #PosturalOrthostaticTachycardiaSyndrome #saltlick #Dysautonomia #SmallFiberNeuropathy #MastCellActivationDisorder #Gastroparesis #EhlersDanlosSyndrome #Subluxations #dislocations #Fibromyalgia #ChronicMigraines #ChronicNausea #ChronicDiarrhea #chronicconstipation #MyalgicEncephalomyelitisChronicFatigueSyndrome #Osteoarthritis #RheumatoidArthritis #Facetarthritis #ChronicPain #Depression #Lonliness #bored #icantpeople
I see a therapist to help me with chronic pain management related to erythromelalgia, peripheral neuropathy, and crps. My latest "assignment" is to keep track of how I feel by putting a number to it. (I know, I know.) But then track what I can and can't do with pain at that level. Then, I log my physical and emotional response.
The idea is to get my body accustomed to the idea that I can do things, and it will be safe. Also, it lets me see what I can do and when. It's like exposure therapy. The more you expose your mind and body to certain activities, you won't be too afraid to try. Yes, exposure therapy has plenty of its own issues.
I've been doing a form of this record keeping on my own for years. But in the past few days, I've pushed myself just to see. The verdict?
I have a pretty solid understanding of my body pretty well, and I know what I can do and when. Even so, it's only been a few days. Maybe it'll be more effective with time. I'm committed to giving this a fair and open-minded effort. We'll see how it turns out. Not every form of therapy is right for every person, and no therapy works magic.
Thankfully, Erythromelalgia Warriors is out there helping people understand what a dreadful disorder this is. They have been a true source of encouragement to me over the years. Just knowing that you're not alone and that you're not the only one is a source of strength.
Today I found an earthworm where he shouldn’t be in my garden . So I gently placed him in my hand
But I didn’t feel the familiar coolness of his touch , the slithers of his movement .
Or the slime of his skin
It was hard to understand
How something so familiar , something I’ve experienced my whole life . Something that to be a sensed so strong .
Was all the sudden.
My mind flashed back to sterile doctors offices as a child
Reflex hammers to the knee
The baffled looked when my legs didn’t jump , the same result happening when they tried different parts of me
Wheels in the doctors brains spinning in hyper drive as you could see their brain pouring over the possibilities.
Then as I grew , their seemed to be a growing collection of “ things wrong with me “
For years , I’ve been a mystery .
As answers has been slowly appearing .
I’ve sat with doctors as they have tried to help me understand
Why my body works like it does .
Why I “am the way that I am “
But when I didn’t feel that earth worm move in my hand .
The neurologist workups and worries made more sense to me
I’ve always cracked jokes when they have mentioned “ Neuropathy “ .
I didn’t see it as a big issue . Just something small .
Not a sign to a bigger issue .
I mean isn’t it better than more pain to just feel nothing at all?
But when I knew how that worm was suppose to feel .
Then felt nothing at all.
It made my “little worry “ feel less small .
As I put the worm in a different container
Watched him slither away as I set him free .
I couldn’t help but mournfully wonder
What will be the next little thing I’ll loose about me?
#smileon🐷 #spoonie #chronicillnes #chronicpain #neurology #Neuropathy #poetsofig #poetry #spoonie #rareadult #raredisease #themighty #mightytogether #mightypoets #SmallFiberNeuropathy #autoimmunewarrior #epilepsy #undiagnosed
The constant -- and I mean constant -- pain is exhausting. The fatigue affects my thinking and my body. The erythromelalgia flares create burning on the inside of my body. Can you imagine your body being on fire every day, several times a day in your feet, hands, ears, face? Then when it happens around 1:00 AM almost every night, that's not fun.
All that breaks down my normal "defenses" and makes dealing with ordinary life issues extremely difficult. For me, it brings a lot of regrets,
The pain in my legs has prevented me from getting out of the house this week. My wife is away on business of a week, so it's just me and my cat. Thank God because without her, I might not make it.
All of this has increased my anxiety and depression. And yes. I'm taking my meds and using my strategies. This is just one of these times.
I'm not a threat to myself. I'm in no immediate harm. I'm just having a hard time tonight. I might want to eat some ice cream.
If anyone is out there, I'd appreciate some human interaction. Thank you.
I watch a lot of sports. It's the NBA playoffs tonight. Sometimes, when I see all the running and jumping, I can feel the pain in my own legs and feet. It can even cause an erythromelalgia flare or peripheral neuropathy spike. It triggered an EM flare tonight. The weather front and high winds are the causes of the neuropathic spike. So, there's that. The mind-body connection is remarkable.
My chronic pain is always there, but it is very fussy about the weather. For me, erythromelalgia is extremely sensitive to temperature. 70 degrees F causes an immediate flare, but flares happen at lower temps too.
However, cooler weather causes spikes with my small fiber neuropathy.
Then, there's barometric pressure. Anything above 30 inches of Mercury (~1016 millibars) causes neuropathic spikes. Often to the point of tears and complete inability of walking. Rapid changes in barometric have a similar effect.
I could go on, but you get the idea. How does the weather affect you?
Chronic pain is not just feeling bad all the time, and chronic fatigue is not just being tired a lot.
It sometimes feels like my life is nothing but finding an occasional respite between bouts of chronic pain.
I've been exhausted all weekend. More than usual. It could be because my "normal" levels have been higher with less "down time" between spikes and flares.
On top of all that, I've had a headache. Not a migraine like I often get. This has been a very sharp pain in the back of my head.
The constant high levels of pain drain all the energy out of my body. Does this happen to you? How do you handle it?
This may come as surprise, but my legs hurt. Shocking, I know. But between erythromelalgia, CRPS, and peripheral neuropathy, my legs have had about all they can take.
The buzzing, burning, swelling, spasms, general pain, and weakness. Tonight, I needed help "walking" to the bathroom again.
A lot of people have it far worse than I do, and that makes me ashamed to complain. Everyone should have access to care and comforts. It's a human right to be cared for in our illnesses.
Tonight, though, even with all the comforts and care I have, the chronic pain is just too much. Maybe it is for you too. If so, solidarity. Either way, thank you for accompanying me in this.