How do you cope?

Off-Topic Chat
41

Sorry if I'm repeating what someone else has said, but my concentration limit was the first page, and I wanted to comment before I couldn't do that either!

On the SH front - have you tried things like using ice on your skin instead, drawing on your arms with a red pen/red paint, flicking elastic bands around your wrist, just to distract yourself until the need passes.

With talking to drs, I always find it hard and downplay everything, or just don't go because it wears me out so much. Have you tried writing it down and giving it to them, or keeping a bit of a thoughts and mood diary and showing them it?

It's great that you can post on here - everyone really cares!

Can I ask for an edit though, that a trigger warning is put in the title? Especially for the SH, as it's not automatically expected.

42

kittencub wrote:

I'll second this hugs from all here talk whenever you need too.

Cuddles are good! I'm telling my bestie to come round tomorrow so i can get hugs lol!

43

Thank you so much MBE, you're extremely kind and your response means a great deal to me. I have followed you and tweeted to you on Twitter, it's from my very old personal account though which I haven't used in years!

It must be so hard what you're going through as well, and while it's terrible for you, it's almost a relief that I'm not alone (I'm sorry, that's cruel!). I'm also glad you're able to talk to us so openly about your personal struggles, it's one of the things that gave me courage to speak out as well as I've seen you do it before, and seen how supportive members of the community have been. So thank you for that as well, and I really hope we can keep helping each other out in any way we can. <3

NMK I'm so sorry I didn't even think to put a trigger warning in this post, hopefully if Jess/Cazz come across this thread they can edit it in for me. I could report my post to the moderators, but will that lock it or close it down?

44

Boogaloo wrote:

Thank you so much MBE, you're extremely kind and your response means a great deal to me. I have followed you and tweeted to you on Twitter, it's from my very old personal account though which I haven't used in years!

It must be so hard what you're going through as well, and while it's terrible for you, it's almost a relief that I'm not alone (I'm sorry, that's cruel!). I'm also glad you're able to talk to us so openly about your personal struggles, it's one of the things that gave me courage to speak out as well as I've seen you do it before, and seen how supportive members of the community have been. So thank you for that as well, and I really hope we can keep helping each other out in any way we can. <3

NMK I'm so sorry I didn't even think to put a trigger warning in this post, hopefully if Jess/Cazz come across this thread they can edit it in for me. I could report my post to the moderators, but will that lock it or close it down?

Ok, i cant see your follow yet but ill follow you back once i see it :)

I'm sure this post will be ok :)But they can change the title if needed :)

I have never in my life been more open than what i am here. It's crazy. I love this place, i love how supportive people are and how open i can be without judgement

45

MissBrownEyes92 wrote:

Ok, i cant see your follow yet but ill follow you back once i see it :)

I'm sure this post will be ok :)But they can change the title if needed :)

I have never in my life been more open than what i am here. It's crazy. I love this place, i love how supportive people are and how open i can be without judgement

No worries :) I did send you a tweet so you'd know it was me, I'll just double check my privacy settings in case I've hidden it from you somehow! (I don't understand Twitter...)

46

I don't have a lot to add especially since I'm knackered (fellow chronic illness suffer here, though not nearly so severe by the sounds of it - still, I understand pain and also the possibility of facing never getting better), but I wanted to send you a huge hug, and I'm so sorry you're having such a crappy time.

47

Thank you lindchilli, sending you a big hug too and I hope you're doing okay xxx

48

Can your gp not refer you for accupuncture? One of the gps at our doctors does it and it's on the nhs, its the only thing that helps a problem my dad has.

49

Hope your feel on the upper hun x

50

VA I've checked and they don't do acupuncture on the NHS in all places, it's very limited and unfortunately they won't do it in my area :/

Thank you so much for your reply Dani :) mutual masturbation is a good idea, we do do it sometimes, but often if my shunt pain is causing me too much trouble we try and stick to oral instead as we're both able to climax very easily from it and it's not too strenuous (most of the time!).

I do still have this sense of guilt though that I'm not good enough for him, because a few years ago before I got ill we were at it like rabbits and I used to have so much more stamina in the bedroom, even when we do have sex now I feel like I'm not as good at it and wonder if he misses the old days. He assures me that if anything, our sex life has improved because we're much more creative now and we try a lot of new things, but it's hard to feel that way when I'm not super slim and energetic any more!

The mood journal is something I really should start up again, and I totally get what you mean about not recognising yourself in old entries. A while back I dug up some of my old journals from years ago when I was still self harming, and they really creeped me out! It was as if some insane psycho had written them, but I guess that just goes to show how much you can change when you're in a bad place. I'll give this another go and see if it helps :)

Thank you Mrs. Hiskett, I definitely think chatting on here has helped xxx

51

Glad it helped hun. Justremember yoir beautiful and deserving

52

Sorry for my late response as I have only just set eyes on your thread as I don't often visit the off topic section.

It good to see that you have a very supportive partner in all of this who clearly understands your problems. But if you feel sex is too painful sometimes becasue of your condition then tell him . Going through the pain barrier ( i mean the undesirable pain here) will not be good for you in the long run as pain is the bodies defence mechanism telling you that something is wrong. He is obviously infactuated with you and probably understands you better than myself or anyone else on here .

As regards friends you have plenty on here but your key friend and soul mate is your partner . Keep communicating with him and I am sure I will be hearing wedding bells in the future assuming of course that you arn't married to him yet.

Good luck and take care

53

Thank you mysteron :)

You're right I shouldn't do it, and he wouldn't want me to be in pain when we're being intimate, it's just difficult because I miss sex if it's been a while. Sometimes we get going and I'm pain free, so it's great, but that doesn't happen all the time. I hate feeling like I've let him down, even though he doesn't give that impression at all.

No, we're not married yet, but hope to be soon :) It's a shame we've lost our house because we were waiting to move in together before taking that step. Hopefully won't be too far in the future though!

54

Hang tight Hun im sure the ring just round the corne:) he does sound lovely im sure ur not letying him down if u give it ago and say "sorry to much pain" may make hin proud that your thinking of yourself

55

Hang tight Hun im sure the ring just round the corne:) he does sound lovely im sure ur not letying him down if u give it ago and say "sorry to much pain" may make hin proud that your thinking of yourself

56

I know I'm new here, but I just thought I'd chip in and say I'm thinking of you - Having your sex life wrecked by disability is one of those things that nobody ever prepares you for (I think the NHS still think that the second you've got a chronic pain condition, you're going to stop having a "normal" life)

I did a long rambly blog post about it a while ago, and it may be gauche to self-promote, but it's all stuff I've found useful before; https://biteyzebra.wordpress.com/2015/03/11/more-cripplesex/

With respect to actually having sex when in pain - Have you tried having sort of "Experimental sex" when you're not hugely in the mood, just to try out positions and practises and find out what works when you're having different kinds of problem. Even if not actually sexy, it's a bit of intimacy, and it's both "showing willing" and giving you and your partner time to think/talk about what you actually need and want from sex at the moment. And sometimes it goes from "Oh, this is a really good idea!" to "Oh, now I'm really up for it... rawr..." And knowing that you can usually rely on oral is good.

I'm worried (from a non-medic's perspective) that your doctor wants you off opiates and onto GABA-analogues; They treat totally different kinds of pain (Musculoskeletal+visceral and neuropathic, respectively) so if you have musc or visc pain, GABAs and amytriptaline won't help at all. Might be time to go and argue with the GP, if you've got the energy.

Sounds like your partner is really supportive, which is definitely a good start. All I can say is "Talk more, hope for the best".

And good luck :)

57

Ozzie Princess-Mary wrote:

I know I'm new here, but I just thought I'd chip in and say I'm thinking of you - Having your sex life wrecked by disability is one of those things that nobody ever prepares you for (I think the NHS still think that the second you've got a chronic pain condition, you're going to stop having a "normal" life)

I did a long rambly blog post about it a while ago, and it may be gauche to self-promote, but it's all stuff I've found useful before; https://biteyzebra.wordpress.com/2015/03/11/more-cripplesex/

With respect to actually having sex when in pain - Have you tried having sort of "Experimental sex" when you're not hugely in the mood, just to try out positions and practises and find out what works when you're having different kinds of problem. Even if not actually sexy, it's a bit of intimacy, and it's both "showing willing" and giving you and your partner time to think/talk about what you actually need and want from sex at the moment. And sometimes it goes from "Oh, this is a really good idea!" to "Oh, now I'm really up for it... rawr..." And knowing that you can usually rely on oral is good.

I'm worried (from a non-medic's perspective) that your doctor wants you off opiates and onto GABA-analogues; They treat totally different kinds of pain (Musculoskeletal+visceral and neuropathic, respectively) so if you have musc or visc pain, GABAs and amytriptaline won't help at all. Might be time to go and argue with the GP, if you've got the energy.

Sounds like your partner is really supportive, which is definitely a good start. All I can say is "Talk more, hope for the best".

And good luck :)

Hi Ozzie, thank you for offering your advice, it's really helpful :)

The GABA-analogues are prescribed for neuropathic pain, as I suffer with severe headaches from my neurological condition. They're pretty useless to be honest, they supposedly help with chronic migraines which can be secondary to the condition I have, but that's not my whole problem so I didn't get much benefit. The opiates are prescribed for chronic back pain (as I've had lots of lumbar punctures in a short space of time) and post-surgical pain caused by my shunt, which doesn't seem to be improving although I've recovered from the operation itself.

I've been to my GP a few times for pain relief, but unfortunately just been brushed off again. I think that they don't like to interfere with my meds too much and leave it all to my neuro to sort out, as the condition I suffer with is rare and they don't know what the consequences would be.

Your suggestion about trying new things sexually is a good one, and something we've been playing around with lately :) We've invested in some massage products and new toys which we use on each other, as well as some bondage/spanking gear. I know that may sound extreme given what I've just said haha, but like you said it excites us and can help take my mind off my other pain. Sometimes it's just nice to experiment together, even though it doesn't always go as far as actual penetrative sex.

Thank you again :)

58

I didn't mean to pry, I just know my GP is a bit... backwards when it comes to palliative care, so I worry that everyone else's is just as bad :) (My things are EDS, migraine, and three slipped discs - I spend a lot of time arguing about painkillers)

Not surprised by the spanking - Strangely, I find that a good session with a riding crop makes me feel a lot springier and in less pain.

Hope things perk up for you soon :)

59

Ozzie Princess-Mary wrote:

I didn't mean to pry, I just know my GP is a bit... backwards when it comes to palliative care, so I worry that everyone else's is just as bad :) (My things are EDS, migraine, and three slipped discs - I spend a lot of time arguing about painkillers)

Not surprised by the spanking - Strangely, I find that a good session with a riding crop makes me feel a lot springier and in less pain.

Hope things perk up for you soon :)

The reason behind this is your deflecting the intense pain of your condition, to a different area which is more sudden short/ sharp, which sort of over rides the bigger pain in the brain. It works on a similar principal that the midwives in my pre natal class put us through an experiment. As you feel pain...pinch the thin webbing skin between your thumb and index finger... You pinch harder while focusing on breathing... As you go through that wave of pain...and you divert your brains focus to a smaller but intense sensation, so the bigger pain gets less.
60

Yeah I think you're right NM, it definitely works as a distraction and I find it gets me in the mood (most of the time). It's a bit nuts that what helps with pain is more pain!