Chronic Pain & Disability

[Nina327]

Hey everyone!!!

I am hoping this thread can shed some light on a few things. I cant really be the only disabled human with chronic pain within the BDSM community and I have questions!

How do y'all deal?
As pyl's how do you deal?
As PYL's how do you deal?
As a pyl how do you deal if your PYL is the one with a disability and/or chronic pain?
As a PYL how do you deal if your pyl is the one with a disability and/or chronic pain?

I have a few autoimmune disorders that cause chronic pain so this plays a part in everything I do.

I know I have more questions and comments but I'm a bit too effing foggy to make anymore sense at the moment! SO... Ok.. opening this up for discussion.


Nina.

------More questions will be added below as I think of them.
If your maso.... how much do you enjoy or do you enjoy any part of your chronic pain?

 

[catalina_francisco]

I have pain on a daily basis, some days worse than others, some where I get to the point of being nauseated from the pain and often curling up in a ball. Sometimes we still play, though usually not as hard, and with thought as to what the issues are. Sometimes he decides it is his wish to indulge me a little in other ways and use massage etc., to at least create some tension release for a short time. It isn't easy for either of us to know what is the best way to deal with it, but we do our best for now incase the future becomes even more difficult.

Catalina

 

[Bandit58]

Sir is diabetic and is on haemodialysis, He has end stage renal failure. He also has arthritis and is in pain 24/7.

We do dialysis at home. During winter it's every 2nd day, summer 3x a week with weekends off. I set up and take down the machine and put His cannulas in. The access is on the back of His left arm and He can't see or swing His shoulders around properly to do it Himself.

How do we cope - day to day. It is not fun having to stick needles into your Sir. The so-called anaesthetic patches don't really work too well. He's on the machine for 8 hours at a time, I am able to leave Him for short periods (usually at the beginning when He tends to sleep the most). That's when I get my errands done.

He can't take oral pain meds. They upset His stomach. We've found one which doesn't, but the pills make Him drowsy so He doesn't take them often. He mostly relies on pot for pain, insomnia and nausea. It gives Him the munchies when His appetite isn't good.

I use the gym as a stress reliever. I go 3x a week in the evening when Sir has finished dialysis, He insists I go even if He's feeling a bit wiped out. I read, watch TV, get on the net (I have some great online friends). Not many of our r/l friends live close, so I am a bit isolated but it's not a problem. I don't need a lot of human contact, I used to live on a farm in NZ so I'm used to being on my own and amusing myself.

Our play is often limited. Sir is in pain a lot plus I am dealing with the menopause which has affected my sex drive. However there is a LOT of affection, touching and cuddles. Even if we don't play or have sex for a few days, that bond keeps us very close.

 

[Nina327]

Thank you for sharing Catalina and Bandit, i do appreciate it!

 

[Nina327]

ok .... yay.. so both y'alls play is still there.. just in a different capacity. cool beans.

I know i sound rather off.. but I have never been able to discuss this with other chronic pain patients or there significant others. Not like you can go on a chronic pain board and truly out yourself on the whole sexual wiring.

catalina... i do love the massage and.. other play thoughts. Questions. Does the massage itself cause pain?... It does on me... but i like it so...

Bandit. I dont blame him for not taking pain meds. I really have a love/hate thing with them. They dull the senses, make me sick, dont work and rarely do what they are supposed to. Could you ask him if play helps with his pain levels? I know its a personal question.... I'm rather good at asking really personal questions so you can ignore it if he doesnt wish to answer. On the pot aspect; it used to work wonderfully well for me as it helped with the pain and reduced the inflammation quite well. I have since become dangerously allergic so its not an option anymore.

 

[Bandit58]

*smiles*
Nina - He's told me more than once that after a good bj He has no pain at all
So we have to do it more often....

Seriously, I believe the endorphin release of a good orgasm can and does help with pain, but it's often getting to that stage which can be a problem. You probably know that when you hurt, and it hurts to move, you really don't want to do anything

We have had to adapt. Certain positions are out because His back hurts too much. We mostly have sex with me on top, or we lie face to crotch so He can face fuck me He's expert at finding my g spot so I have NO complaints

 

[Nina327]

*smiles*
Nina - He's told me more than once that after a good bj He has no pain at all
So we have to do it more often....

Seriously, I believe the endorphin release of a good orgasm can and does help with pain, but it's often getting to that stage which can be a problem. You probably know that when you hurt, and it hurts to move, you really don't want to do anything

We have had to adapt. Certain positions are out because His back hurts too much. We mostly have sex with me on top, or we lie face to crotch so He can face fuck me He's expert at finding my g spot so I have NO complaints

Alright- trying to reply for the third time... damned fuzzy head.

I will agree with the whole orgasms rock for pain removal! Though sometimes mine will backfire and give me a migraine... ... and totally if they are really good.. The next day i will feel like I have been beaten all over with a potato sack full of bricks..... but I gladly take all of that for the total zonage of O-bliss.

Yes.. I do know the whole... eff you I'm not moving thing.. but it really only borders on what i'm not moving to not do.. lol. Whether or not the pain level that i am at is more than I can handle.. as sometimes i wish my body knew WTF a safeword was.

Adaptation had really been key to my life in general. I am familiar with the back pain positions too.

 

[Nina327]

Fish or flax seed oil. (omega 3 fatty acids)

I suffered from chronic pain for several years when I was younger, due to a fatefull fall down a flight of stairs. While chiropractic care did help some, I ultimately attribute my recovery to a greatly increased intake of Omega-3 fatty acids.

Omega-3's are vital to your nervous health in general, and help on so many levels, but two points in particular relate to chronic pain;

1)They increase your pain tolerance. Precisely how was explained to me in detail ages ago, so the pieces are coming back a little fuzzy. Essentially, the pain receptors that fire most frequently get "tired," and require less and less stimulus to refire. Omega-3's aid the health of the nerves, allowing them to reset better and fire less often.

2)They help your body break down neuro-elastic loops. When you have chronic pain, the particular pain pathways that fire most often adjust to become more efficient, creating a feedback loop that requires little to no stimulation to begin firing. Once these loops have formed, normal pain killers do very little to help. Omega-3's allow your body to break down these loops.

hey Stag.

I have done research into the whole Omega 3's deal... very very interesting stuff.
My new vitamins have a really good source that I can finally take as I absolutely cannot do the Flax thing. Flax seed seems to really kick my nerves into hyperdrive and I end up being a ball of screaming gibberish. So doc says no more flax for me. The fish oils usually come from fish that eat shellfish.. and fk me if shellfish dont just make me flare like mad. SOO. while I am all for reprogramming my nerves... those options are not suited to me. Like I said, about my vitamins, for some reason i'm not having the reaction to their formulation like i do other Omega supplements so here's hoping they do what you describe. that would so rock!

 

[Etoile]

IMO, when a pyl has a chronic pain condition, the PYL cannot always be in control. This is one of those situations where, no matter how ideal the relationship is otherwise, no matter how complete the Power Exchange...there is no way for the PYL to know how the pyl feels, health-wise. It is the pyl's responsibility to report any physical issues to the PYL, and it is the PYL's responsibility to act accordingly.

Frankly, if a PYL will not dial down or otherwise adjust the interaction when a pyl is suffering the effects of their illness, I have no respect for them. It's not a matter of "PYL's wishes come first," it's a matter of "don't break your toys" and if the PYL wants to keep playing at the normal level, that's straight-up wrong. I have a wide tolerance for a lot of behavior, but that's one thing where I draw the line. When the pyl is chronically ill, the PYL listens and heeds.

My perspective is that of someone with autoimmune disorders and mild chronic pain, who is the daughter of someone with severe chronic pain.

 

[CutieMouse]

IMO, when a pyl has a chronic pain condition, the PYL cannot always be in control. This is one of those situations where, no matter how ideal the relationship is otherwise, no matter how complete the Power Exchange...there is no way for the PYL to know how the pyl feels, health-wise. It is the pyl's responsibility to report any physical issues to the PYL, and it is the PYL's responsibility to act accordingly.

Frankly, if a PYL will not dial down or otherwise adjust the interaction when a pyl is suffering the effects of their illness, I have no respect for them. It's not a matter of "PYL's wishes come first," it's a matter of "don't break your toys" and if the PYL wants to keep playing at the normal level, that's straight-up wrong. I have a wide tolerance for a lot of behavior, but that's one thing where I draw the line. When the pyl is chronically ill, the PYL listens and heeds.

My perspective is that of someone with autoimmune disorders and mild chronic pain, who is the daughter of someone with severe chronic pain.

Agreed... but it is somewhat depressing. (Said as someone who is currently looking at a chronically moderate pain issue. sigh.)

 

[Etoile]

Agreed... but it is somewhat depressing. (Said as someone who is currently looking at a chronically moderate pain issue. sigh.)

Oh I know...believe me, I have been angry about my health issues many, many times...and that's just one example of why.

 

[CutieMouse]

Oh I know...believe me, I have been angry about my health issues many, many times...and that's just one example of why.

My orthopedist is starting to think the issues with my hand aren't carpal tunnel syndrome, but dystonia. CPT is curable; dystonia is not. And I feel like such a whiney baby for being this teary-eyed over "writers cramp" (because I know so many people suffer much more than me), but it's like a permanent cramp of my right hand that extends up into my entire right arm. Any fine motor skill triggers it. I can't hold a glass, grip the steering wheel, write a note, use a fork, brush my hair, cook without pain. Shaking hands sometimes hurts, so being pinned by my hands [during sex] is probably out. Masturbating has gotten too uncomfortable to be worth it. Hand jobs are impossible. Thank goodness I'm not into bondage, as it causes numbness in that arm after only a few minutes. Sigh.

(Don't mind me, I'm just being grumpy.)

 

[Nina327]

IMO, when a pyl has a chronic pain condition, the PYL cannot always be in control. This is one of those situations where, no matter how ideal the relationship is otherwise, no matter how complete the Power Exchange...there is no way for the PYL to know how the pyl feels, health-wise. It is the pyl's responsibility to report any physical issues to the PYL, and it is the PYL's responsibility to act accordingly.

Frankly, if a PYL will not dial down or otherwise adjust the interaction when a pyl is suffering the effects of their illness, I have no respect for them. It's not a matter of "PYL's wishes come first," it's a matter of "don't break your toys" and if the PYL wants to keep playing at the normal level, that's straight-up wrong. I have a wide tolerance for a lot of behavior, but that's one thing where I draw the line. When the pyl is chronically ill, the PYL listens and heeds.

My perspective is that of someone with autoimmune disorders and mild chronic pain, who is the daughter of someone with severe chronic pain.

Oh.. I agree with you 100% on all that!

I so love that phrase... it's a matter of "don't break your toys"

It really does hike up the communication levels too. Not hat I am saying there isnt open communication in the first place but a pyl must be able evaluate their own condition and truthfully tell their PYL whether or not they can play, at what level and at times stop play because they were incorrect in their original assessment of physical availability.

I know personally that I will play even with my pain level very high merely because, well, sometimes the pain is pushing my buttons. On the flip side though there are times when i just can't even though my pain scale is extremely low, just because other symptoms are playing havoc with my body. Tis the crapola of multiple autoimmune disorders.

 

[Nina327]

actually, my wife had problems with the cholesterol in fish oil. So we switched to a more expensive one for her; a molecularly distilled, cholesterol free omega-3 suppliment. Found it at super suppliments. Might work for your issues too? (if that other one you found doesn't work for you)

I should mention that you have to take omega-3's daily for about a month before you'll notice any difference, then then the only difference you'll really notice is that you won't notice the difference, except that.... hey wait, I don't hurt so much now!?

When I got my mom to start taking fish oil she almost swore it off after a month or so, claiming it didn't really do anything, until I pointed out that her shoulders weren't bothering her as much as they were before she started taking it.

Oh gee, you think that's related? (my mom's a nurse, no less)

Since then she calls me for advice on nutritional supliments, as if I'm some kind of Guru.

i'll keep the time issue in mind.. thanks! this one should work. I was almost up to a month when I had to stop taking them last week. new antibiotic says no vitamins sooo I'll be restarting it next week.

guru... I get that too sometimes! Just because i know about my freakishly strange autoimmune disorder and i research the hell out of it doesnt mean i know what the rash on your leg is .. go see a doctor...

 

[Nina327]

Agreed... but it is somewhat depressing. (Said as someone who is currently looking at a chronically moderate pain issue. sigh.)

depressing... yea... can really be that way. .... It will also give you a wicked strange sense of humor too. well it did me...

Oh I know...believe me, I have been angry about my health issues many, many times...and that's just one example of why.

I don't think i know anyone with an autoimmune disorder that hasn't repeatedly been pissed off by it... just sayin

 

[Etoile]

*puts hands over eyes*

Let me know when the ear pain discussion is over.

 

[Nina327]

precise definitions of masochism are perhaps best left to their own thread.

That said, I have found myself to be mildly mashochistic; depending on how it's inflicted, feeling pain sometimes makes me feel closer to the person inflicting it... similar to good efleurage (a light touch massage technique). I still don't like the pain, but I accept it as nurturing touch.

I'm certain that's not how 'typical' masochists function, though I would be curious to now how common it is.

That said, I cannot fathom my chronic pains of yore, nor the 'normal' back pains I suffer from day to day now, and especially not the migranes that have been plaguing me more and more this past year, ever ever ever pushing masochist buttons of any kind. Clearly I don't seem to have those particular buttons, but that kind of dull, sometimes throbbing, persistent, unabaiting pain, defy me to see it as a turn on for anyone.

Then again, there are plenty of well established fetishes that are just as alien to me.

I'm curious though, do nauseating headaches ever turn you on? How about ear pain? ... I could go on for a couple pages; to be more specific, can you articulate where/ how your pains are that push those buttons, and which ones don't?

LOL.. see .. i kinda feel like a purple people eater now.. LOL..... and i also have no clue how normal people function.. normal isnt part of my vocab.

Um... lets see. nausia has never happend from pain. yes I lose my appetite but its never made me nausious. I dont know if its from having chronic pain all my life or my brain doesnt associate the two like it does for other people.


ear pain... no that just makes me pissed off. I get sensative to sound to frequienly so pain there is associated to negative feelings.

I have quite a bit of muscle pain and i greatly enjoy massage. yes i know most people like massage.. but most dont request one when they are in that much pain.

Hmmm... leaving it a rather broad topic kind of leaves me with far to many things to list.. as i have muscle pain, joint pain, backaches, pinpoint nerve pain... (yes there are times when I wish for the pain to stop, absolutly.) So if you want to ask a more specific question i can answer it much more precisly than an open ended one.

Dont get me wrong.. i greatly enjoy the sensual and non pain inducing play but with my pain.. damn near everything causes pain any damned way ya look at it.

 

[catalina_francisco]

catalina... i do love the massage and.. other play thoughts. Questions. Does the massage itself cause pain?... It does on me... but i like it so...

Sometimes the massage helps, sometimes it increases the pain. Arthritic pain is one which gets me to the point of throwing up at times, and for that massage can be worse rather than better. I also had a broken tailbone early on and that was difficult to work around and continued to be so for around 3 years. We still played in terms of flogging etc., but if he went too close to the area, it would often send me flying into the air, We still have to be careful because if he hits directly on the area which was broken, it can bring back the pain almost as if it were new.

Menopause has also created a lot of pain issues along with a few others which impact on carefree play. Just had an appointment last week and found out the physical issues iof menopause have increased over the last 18 months, but thankfully the doctors are still backing our choice to not opt for a hysterectomy or HRT as wise and acceptable as it all is a matter of time and the problems will fix themselves. It is a long time coming, but I prefer that to the possible alternatives for now.

Catalina

 

[graceanne]

There are a lot of people here who have chronic pain and/or a disability or are in a relationship with someone with one or both of those.

I have crohns disease (along with a host of complaints piggy backed on that like chronic anemia and chronic diarrhea), a form of arthritis similar to rheumatoid arthritis, and several other small things.

K has permanent cranky-itis.

How we deal with is a day to day basis. We don't have like set rules for dealing with it, but there has been times where I'm sure we'd have had sex, or played, but my pain tolerance was nil (cause I was already in pain). We have issues with certain positions during sex bump into my colon and that HURTS. And not in a good way. Honestly, though, energy causes more problems than anything. Or should I say, lack there of. It's really hard to get good sex when I'm flat ass exhausted.

 

[KissKitt]

I am lucky enough to have fibromyalgia, which, as my doctor explained to me, essentially means that they don't know what the heck is wrong with me. My aunt who also has fibromyalgia told me that she believes it's muscle spasms throughout your entire body. That's certainly what it feels like! Some days are better than others, but then again, I've been in the ER 4 times in the past year because the pain got so bad i was literally curled up on the floor, crying my eyes out and gasping for breath.

How do I deal with it? One simple combonation, pills and a growing pain tolerance level. The medicine I take is not meant to cure or fix my problem, merely the symptoms.

 

[Etoile]

Unfortunately fibromyalgia is a full-body condition - if only it were restricted to one area! It's incredibly debilitating. My mom has it too, but she was never particularly active; I can't imagine how your friend must feel, knowing what he used to be able to do.

 

[dexwebster]

I'm an owned switch, so my dealings with this are mainly from the pyl side, and with chronic pain from malformed knees (currently jumping through insurance hoops for the first of many possible surgeries) and, we suspect, hypermobility issues.

How do I deal? Not well, would be the short answer. I get cranky when I can't do everything I want to be able to do.

Realistically, I deal by:

a) telling myself that my job is to take care of my partner, and the better I take care of myself, the better I'm able to do that.

b) keeping careful tabs on my emotional state: it is common for someone who is used to being able-bodied to become frustrated and depressed when they can't anymore.

c) Pursuant to that, making myself useful. I prioritize what I do and spend my energy carefully, and make sure the stuff that is within my limits is done and that my service is well-honed. He loves homemade lasagna: it's now a careful, all day process done in chunks. And while I may be not be able to cut the grass, his clothes are laid out and ready down to the shirt stays every morning, and his tea is ready when he wakes up on the weekends. I've picked up knitting again recently, and it's made a world of difference just to have something else to do when I don't feel well enough to get up and do anything else.

d) I try to accept with more grace than I feel (and less than I'd like to) when my partner makes a choice for my sake that I don't like. When he fetches something from the basement instead of asking me so I don't have to go up and down the stairs, or makes me use a wheelchair in a big-box store instead of doing it all on crutches and exhausting myself.

there is no way for the PYL to know how the pyl feels, health-wise. It is the pyl's responsibility to report any physical issues to the PYL, and it is the PYL's responsibility to act accordingly.

I basically agree with everything else Etoile said, but I will add something here. When a pyl is the one with health problems, I think a PYL sometimes needs to stop things or rein them in before the bottom indicates it.

It's easy to say that it's the pyl's responsibility to report physical issues, but it's very easy for them to lose sight of that--especially a very service oriented person, who may be more inclined to push themselves to the point of real injury to accomplish things.

And for me at least, the more spacy or bottom-y I get, the less able I am to determine those issues, especially if it's "How will this effect me tomorrow?" I realistically shouldn't kneel for more than a few minutes if at all. But if I'm in a scene it's very easy to not think about that. Sure my knees feel fine right then: I'm full of endorphins and other fun chemicals and completely focused on my partner/what's happening. Right then it doesn't matter that I'll barely be able to walk for two days. Right then it's perfect and I'm just fine--I'll stay there all night if it's what you want. So sometimes really can take my partner stepping in and saying, "No, I don't care what you think, you've had enough."

Yikes, this got long. Oops.

 

[CoupleFromOhio]

I have multiple sclerosis so my chronic pains comes and go. I have mild diabetes. My wife has diabetes. Our medications often make us want sex less but we do enjoy sex in many different ways. We just love intimacy. We both are highly and sexually couple. We both are working. I work full time. My wife works 2 part time jobs. We have one disabled adult child living with us. So, our lives are busy but not busy enough for erotic stories.