Sex sex sex,

itsafeething

hi I’ve been with my partner 9 years, sex was amazing until I got ill., for a bout 2 years I’ve not been interested, Im fat and feel very ugly, I’m scared he will leave me, he does everything for me and our children, am 32 he’s 50, he deserves so much more, I’ve fibromyalgia I have borderline personality disorder , chronic fatigue syndrome, under active thyroid, physical issues, sads, post traumatic stress disorder, also emotionally unstable disorder and depression, am on so much meds that pile on weight including quitiapine, I don’t know what to do , I can hardly walk, breathing is difficult, doctor now thinks I’ve sleep apnea.... I don’t know what to do x 

mossycow

Hey  again, cool name again
Couldn't read without posting (I'm just poorly today so typing utter ****, sorry) 

But the main thing to say is talk to him. Have you talked to him? Like, deeply... Even if you have to turn the lights off in bed to talk so you don't feel embarrassed (like er... I did)

We are in a similar way. The change is really hard. Ad you've said  everything you have and are taking are working against you. What is not against you is his love and desire for you. He has a choice whether to be with you or not and he is. And I suspect he wants to take care of you  same as you love and care for him. 

janejr

I know that feeling. I've gained weight since being ill and feel so not sexy. Fat old and ugly is how I feel about myself and that's despite my man telling me I'm sexy and that he loves me. The feeling of not being good enough have always been with me. Lucky I have an understanding man don't know how he puts up with moody me. Roll on the summer as I'm always happier in the sun , even the heat helps lift me and eases my pain

PSHEexpert

Hello all and I apologise for the slow answer - I had a little bit of leave and didn't pick up notifications while I was away.  It's very difficult, when you're feeling really low in yourself, to see a way forward and I really sympathise with you feeling overwhelmed by it @itsafeething.  I second @mossycow - have you talked with your partner about all of this?  It's hard when it's such a deeply personal thing that's so tied to our sense of worth, but I think that has to be your starting point.  When the things you're facing up to combine in your head to make you feel rubbish about yourself it can be very challenging to hear someone else's take on things, but it's really important.  Have you any opportunity to seek any talking therapy from anywhere?  

mossycow

I know it's cheesey too but, maybe explore other ways of being physically and mentally intimate during this time. A lot of medications causes low libido but often this wears off. I have found that it took 3 years plus to get in a tiny bit back to more normal.

I think sometimes, the fear, anxiety and change stuff can make the whole thing bigger and worse. Perhaps try and chip that away soon. Have the confidence to say what you need. Have the confidence to say "I need reassuring that I'm still attractive etc". Me and Husband have had many many discussions and things I have found are that he was really really worried about trying to touch, pat, hug me etc cos of the pain. I've tried to get better at saying when my skin feels bad and when I like to be touched. Other stuff like him being tired not just from being 'the carer' but also normal stuff same as any other chap, being a working husband and dad etc makes him tired and distracted too. 

I think as well  I got scared that if I showed affection, it would mean... Folks getting worked up.... Then me not being able to... Continue what I had finished... So at one point we were both not trying. 

It was really hard talking. We're madly in love for (then) 10 years... Close... Open about stuff... But still really really difficult. 

I had some talking help from a counsellor and from my pain therapist support worker... That helped us talk and gradually it has got better. We... Er found a few bits and bobs that helped too.... Especially some how do I put it..  Adult chats. .. I found I could live out physically impossible fantasies by saying them and that often really helps. And if all we do is the talking and nothing else wants to happen. . Then it's still something we've enjoyed together. Without pressure. And.. If its a bit one sided.. Then one sided sex is fun to watch too. Sorry if tmi but I think bluntness is needed. 

Sex is not the same... But... It's not a worrying issue now. We're getting better at post-pain/disability sex and more importantly better at keeping touch  sex-wise. 

I know it's really, well, you grieve your previous body. In terms of work  social life, mummy life and certainly your wife life and sex life. 
But you are really only at the start of the new you. This is not how it will always be. 

PSHEexpert

@mossycow thank you so much for sharing such a frank and open response - I think it can be such a turning point when you realise you're not on your own amongst it (and feeling horrible about yourself IS really isolating and scary).  Your points about your husband feeling scared about touching you in case he hurt you or made it worse, and yours about not wanting to rev the engine and then feel unable to carry on (as it were) are so familiar and it can be properly misery inducing.  

mossycow

Well, only my opinion but, it was someone sharing with me that helped. And we find talking about sex tricky, especially here where we're not anonymous.

Talking of which... I did write a little blog post about this, cos I do think it's something so important. By the time we've seen doctors and consultants and benefits advisors etc and sorted out our kids.... We don't think sex is important enough to get help with. 

I was lucky that my pain support worker taught me it was important. And worth spending time on. 

mossycow

Well  it's only my experience and opinion, I'm no expert.

I just think we find it so difficult to talk about. 

We spend ages with doctors, consultants,  sorting medication,... Getting benefits, wheelchairs, devices etc sorted, making sure our kids are OK... We just don't think sex is important enough to sort it really.

I was lucky I had a support worker at my pain clinic who DID see this as an important part of my recovery into a new life. 

Don't know if this helps but... I did write a little anonymous blog post about it here. 

Do take with pinch of salt, might not work for you but even if it just makes you feel less... Isolated with it. 

https://community.scope.org.uk/discussion/36005/lets-talk-about-sex-and-disability

mossycow

She gave me the leaflet version of this:

https://www.bhf.org.uk/heart-health/living-with-a-heart-condition/sex-and-heart-conditions

I think age uk do one too... Which is a bit depressing as it implies this only affects older people but  we'll, get support from where you can get it I reckon! 

@PSHEexpert Does scope have any literature on sex. E. G. Physical things that might help, where to get support etc... Sex in a wheelchair heeheee. . In all seriousness though. Do Scope do any... And if not.... Could this be thought about? 

mossycow

Oooh! I just found this! 

https://www.scope.org.uk/awkward/a-z

mossycow

Me and my other half are due a chat about stuff.. Might shoe him this link and us read it together... Sometimes that's less awkward than saying 'hi... Let's talk about sex dear' heehee

Waylay

I can still have sex some of the time, and still want to sometimes, but it has definitely changed. I can't do a bunch of positions anymore, and I can't do any position for very long. About 1 time out of 3 I have a back spasm at some point and end up curled up in a ball (I have to stop, take more meds, apply heat, etc. No more sex that day or maybe for a few days). I always feel bad, because sex with me is complicated, and often frustrating.

I'm lucky in that I've been polyamorous for years, so I don't feel the pressure to keep my partners satisfied - they have other partners, so at least I don't feel bad that they're not getting any. However, their other partners aren't disabled, so I sometimes wonder why they still want to be with me. I try to remember that sex is part of love, and they love me, so even when it's difficult, or frustrating, or when I can't or have no libido for months, they still want to share sex with me. It's really hard, though.

123_Bear_321

Hey, just responding to the OP's OP. Don't quote me on this, but you can't allow yourself to be labelled a burden. I imagine you and your partner got into your current relationship because of ****. You are worried that you are a burden on him and your children, but you are not: **** is not a burden, its tiring at times, but rewards so much more than the simple physical exertions which it causes and costs, even any negative emotions when moods flare are physical responses, take care: allow yourself rest. Sorry if this remark was more for my own good than anyone else's. I'll try and be the one with the problem/question next time Oh wow, "these days" by foo fighters just came on Spotify automix!! sorry to be crass. I've pretty much spent the last week at home as I do not have enough money to go anywhere (I rely on public transport). I used to always go out and "do everything", I'm feeling its important to be "gentle to ourselves", kind to ourselves. People do not normally stand idly by and ignore suffering. Perhaps (and I appreciate this may have been mentioned in a response further down from the OP's OP): perhaps you should look into getting a carers allowance form for your partner? Don't think of it as "looking after you has now become a paid job" and the change in the relationships between yourself and your partner that that may suggest, think of it that both of you and your family will benefit from the extra financial help that may send your way, to ease the additional physical strain this has placed on you all regardless of there now being a "cash incentive" to continue in the situation together. If it helps, start with the agreement that you will split the additional money 50/50 each time it comes in, and get yourselves and the kids some respite, as much as is offered. As for sleep apnoea, I am fairly sure that is a side effect of the neuroleptics, and a side effect that is massively eased by abstinence from alcohol (it is mentioned in the PIL, alcohol is contra-indicated for many psychiatric drugs, and the one you mentioned you take: I dont think is at all an exception... )  do you drink? Try to reduce the frequency of drinking alcohol, and the amount you drink when you do drink. Perhaps also try a (wine/beer) in the afternoon but not in the evening before bed (try not to nod off now!!!) I am assuming too much perhaps, but its now 2am, and my knees hurt and my eyes keep closing... nn take care.