Lack of intimacy, constantly sniping

[ThisisaNC]

Been together 20 years. Two grown-up kids, one living at home.

We've not been intimate for a number of years including hugging, kissing, cuddling. Disability has become more prevalent this past five or so years, one of us is bedbound. We may say "I love you" occasionally sometime but feels empty on both sides.

We snipe at each other pretty much daily.

I doubt either of us feels able of leaving though; fears of how both children would be affected, especially the one living at home; lack of financial resource; the bedbound persons lack of mobility; one of us has a life-threatening condition that would potentially cause death within a few days non-attention.

We are both fucked, aren't we?

Thanks for your post Fairy. I cannot walk more than a handful of steps before excruciating pain hits my legs and my balance is very poor. I always make myself walk to the bathroom, holding on to a rail all the time, but it's harrowing to say the least.

I'm sorry to hear about your conditions too, and those of your son and DH

Your post has made me wonder if I could possibly find any support groups on something like Facebook... I'm also thinking even though my physical aspect is screwed, I like to keep my mind active. Even with the mental fatigue and sleeping I've just had a quick skim of the Open University's prospectii, and there's a few courses that excite me. I think I'll have one of their senior staff contact me to talk through things. Apparently enrolments start in Nov for Feb start and May for September start, so potentially in time for either!

Definitely look at Facebook groups. If you search up the various conditions you have you should be able to find quite a few. I find them really comforting and helpful, just be aware that obviously people tend to join them when they’re going through a bad time and others may manage their conditions much better and not feel the need to search/ join for them so always keep that in mind as it’s easy to become very negative about things sometimes. I find it also very rewarding to try and advise and help others going through similar situations. Like you my mind is very “with it” and I have to have things to do!

Good luck with the ou stuff. They also have a site of free online courses (I think if you search free ou courses) the site will come up, might keep you busy whilst you’re in the middle of registering etc.

Hey there :) Relationships with a disability is tough. Two disabilities, even tougher. Add a baby, I can't imagine.

I have ME, endometriosis and recently told that I actually have fibromyalgia which was apparently diagnosed years ago (news to me) and a rheumatologist won't even see me because I've already been diagnosed. So I'm stranded basically with just a crapload of morphine for company. I have 15 month old twins - we spoke seriously about having a baby, figured out how to make it work. Then my body decided to make two. Then one of them developed a very rare and serious illness. I can't tell you how hard all this is and I am not bedbound.

Keep talking to your DP. I'm sure you're both struggling with this. You need to try and find space to enjoy each other's company, even if that's watching a movie in bed and having a cuddle. Hang in there x

Thanks Tammy, sorry to hear about your disabilities. It's estimated from my research over 75% of people with both M.E and Fibromyalgia ALSO have CSS (Central Sensitisation Syndrome), also known as CPS (Central Pain Syndrome), Wikipedia has a great page on CPS - https://en.m.wikipedia.org/wiki/Centralpainn_syndrome

It basically causes us to suffer elevated levels of pain throughout our bodies, and is classified as a Rheumatological condition.

Sorry, I borked the link.

https://en.m.wikipedia.org/wiki/Centralpainn_syndrome

My DH has had CPS for years and suffers terribly. Is it this condition that you’re referring to as ‘early-onset rheumatoid arthritis’? I’m a bit confused. CPS is not at all RA. It may have rheumatological links but there is no arthritic component.
It’s interesting to see the Wikipedia article you linked to. Do you get much of the info about your health from Wikipedia/the internet I’m wondering?

I can’t imagine life with all those health issues. I get snappy and down when I have a cold. Hats off to you for pushing on through one day after another.

My neighbour has a severe physical disability. I don’t know how she does it but she is all smiles and sunshine, friends endlessly calling round etc etc.

Incredibly difficult though it must be, I think finding some positivity has got to be the only answer. As soon as people start on a spiral of thinking of all the crap that they are going through it becomes intolerable.

In your situation I would get myself a couple of little cats and focus some love on them.
🐱🐱

I should add- I’m a HCP and a few things about your posts lead me to feel that you need more contact with actual HCPs irl rather in order to be a bit clearer and less likely to fall into the Dr Google trap.

For instance, the way you describe your OHs diabetes is very odd, and your use of non-existent diagnoses such as ‘early-onset RA’ is a bit concerning.

I’m sure you are suffering in various ways- that is very clear and I feel bad for you. But I’m not sure your situation is helped by the frameworks within which you frame yours and OH’s physical conditions. I wish you all the best and hope you can get some clarity and help soon.

I have lost two friends in the last couple of years from similar conditions to me but their outlooks and ways that they dealt with things were polar opposite. One really did take to her bed, she revelled in google and the drama of the support groups (I know some are fab though) and she could not get over the hump which was her health. And the fact is if you were picked for surgery you want to surgery ready- lungs used to being pushed and pain Meds/ steroids down. You need to be match fit.
My other friend I didn't know she was dying until the last month. She had reams of surgery and chemo and it kept attacking her. She worked and was fit and they would find another tumour. She was not her illness, it was a part of a busy life.
I try and take guidance over her approach. I could be signed off forever. I have a lifetime DLA assessment (although I know this will change) I take 24-30 tablets every two/ three hours. Had 24 surgery's and desperately need another - had to wean myself off the steroids that keep me walking first. I have a GISt which is a bastard big tumour (it weighs nearly seven stone) and I have no bowel internally. It's all outside the wall and agonising
Thing is if I just said 'no more' who is going to look after my sons? Or clean the house and make the tea? I could have nursing care - they come once a week for medical care but I want to do it. I am not giving up. If you are down don't wait- why is the Doctors New year? You have wasted the last years. New approach is needed
Don't you feel you deserve a life? Even pottering around your house would help. You won't be doing much in the way of romance and just interacting being in bed.
You need to claim it back whatever it takes
I am not likely to life for much longer as my lungs are being crushed and I have such reduced lung capacity. Bullocks to spending it in my pit though.....
How old are you out of interest?

Runcible - No, the CPS and the (potential) RA are separate diagnoses.

I linked the article from Wikipedia as I found it the best from my very quick Google search.

Regarding my medical information, I have a medical degree from a couple of decades ago. Granted I've forgotten much of it, and not been in a position to action all of it (although I did a stint in various departments and as a GP Registrar).

Also Runcible, Ive not helped myself with my descriptions in this thread through being purposefully vague and going round in circles to try and avoid being outed/recognised. If I could have just described things correctly the errors you mention would never have happened.

So much for internet anonymity eh?

I m another one with ME and I really get where you are coming from.
Chronic illnesses are tough. On the person, on others around and in relationships.

I have found that the most important thing I can do for me and my relationship is to look after myself.
On a physical level : anything from diet, supplements, medications, complementary therapies etc...
On a MH level: things that keep me happy, meditation/mindfulness, finding something that I have a real interest for and that I can do etc... In effect, learning to be happy even though my life has shrunk so much, i can’t do anywher as much as I want etc...
On a relationship level: the first thing that has made a difference for me is to feel better in myself. Because then I am not as snappy and therefore things are easier.

Last, one thing that has helped is to know I have an outline in my mind of what could be put in place if we had to separate. That I could have a system around me wo H if things were going really badly. So if, for example, your H had a major health issue. It gave me some peace of mind and I am Wondering if this woudnt do the same to you and your DH.

Last but not least, I am pretty sure I have come across the idea that diabetes is always harder to control when people are under huge stress. Would that be a possibility for your DH? And if so, what about him taking time to look after himself too so he is feeling less stressed out?

I'm wondering if you could be lonely and looking for company / something to fill your life with. Do you have friends that call around for a chat and a cup of coffee ? Are their any befriending services about your area that could perhaps come to your house or some areas do a telephone service.

Wanted to check in.

I wanted to thank everyone who's posted on this thread. You've really helped my state of mind and being ab,e to think about what really matters in life and in my relationship.

Short version is that despite being bedbound with M.E (and the other conditions I mentioned) I can still help my state of mind, even though my physical body isn't tolerant of activity of any form. The amount of pills I take each day (sans painkillers) is astounding. I counted 18 at "bedtime" last night.

I was able to have a talk with the OH last night. I'd been formulating in my mind that being bedbound made me unwanted, a pain in the ass, a burden and of bringing no quality of life to them. Allowing my confused, muddled state of mind to infuse these feelings on a day-to-day basis, and once you're in that infinitely repeating loop there is little you can do. THAT is where this thread has helped - giving me a short, sharp shock. OH and I actually kissed last night, and I think we are on the road to recovery, although there is a long way to go to redevelop full intimacy. Knowing OH doesn't see me as a burden meant so much to me, and there is no fucking way I would have opened up in any way without the replies in this thread.

Baby is off the table. IF I recover in the next couple of years (highly unlikely due to the severity of my conditions), and OHs diabetes control improves (highly unlikely due to numerous attributes I can't open up about for fear of being outed), we will revisit the discussion.

Thanks for your post @HermioneIsMe , it resonated on so many levels. I really don't think m(any) professionals truly "get" M.E - after all it's just a bit of pain, bit of tiredness, right? Let's fuck this person off to CBT, graded exercise and chuck some pills at them and they'll be find.... that so many STILL refer to M.E as " Chronjc Fatigue Syndrome" really pisses me off. It's a severely debilitating illness that a large percentage never recover from, and the likes of GET makes tings WORSE...

Due to severe issues with my DSS from an early age, and health problems with DD (and health problems and lots of operations for both myself and OH) there's no doubt that we have been under tremendous amounts of stress for close on 18 years. It's been unrelenting, and trying to catch a break is so fucking hard. There is no doubt, no doubt at all this amount of stress has had on BOTH OUR state of mind.

Being so disabled, it's hard to get motivated. I was feeling upbeat at like 3am so I emailed some professional acquaintances I developed some years ago, and they've given me access to lots of resources for a field I was once very interested in. I've also decided to say "fuck it", and logged a request for the OU to call me to discuss options and signing up for a degree - there's a few fields I'd be interested in...

Namethecat- yes, there's no doubt I'm lonely. When you're essentially stranded in bed except for getting out to appointments (and perhaps an occasional supermarket trip every four weeks or so) it's hard to be happy, and motivated. Friends all drifted away when I became disabled, they showed no interest, even those I would class as good friends. One actually FB messaged me saying essentially "Sorry. I can't see how you can get out anymore and have fun with us." This is likely a message that was prevalent amongst most, and the rest of the pack just developed the attitude I don't exist.

Thanks again for all the posts, they've really helped. There are some that have stung, but I kind of expected that, and I'm happy that people have been honest, without ripping me a new ass. Just one post that hurt and was unnecessary. to you all for taking the time to post.

Thing is, I spent years being positive and hopeful. Chasing up referrals. Researching new treatments. Crying when yet again there was no improvement. Beating myself up about every day I couldn't get to work, or cancelled on friends.

Actually accepting that this is how it is, and I have to work within that, is what saved my sanity. People who haven't experienced this sort of illness will tell you "oh but you can't give up hope". Actually I find hope isn't productive when you're in this situation, just another way you're failing.

This is how I cope, others will be different, as will you. Hang in there. I think cats are a good idea - they brought me a lot of comfort.

Thank you for the link. I've been having burning pain in both legs for months now. Doctors aren't interested as usual. Will discuss this.