Like most of us that have been in ICU for some time and have had interventions for all different medical issues to save our lives the route back to a new normal is generally a long and complicated time for a myriad of reasons both physical and Mental.
When my ICU and ward hospitalisation came towards the end I was actually dreading the thought of going home, mostly because my partner had only been out of hospital a month with sepsis pneumonia herself and weak and reeling from her own ordeal .
in the phone calls prior to me getting home I could feel the trepidation in her voice when speaking about that event. I was not ready to go home and in fact I’ve found out recently that I was supposed to be going into a rehabilitation centre so I could build some strength and cope doing some small functional things like making a drink etc. because of my partner being poorly
That didn’t happen and I landed with a big bump in more ways than enough. I still couldn’t walk properly without a wheeled frame, unfortunately before I went into hospital I had pulled the downstairs WC out as part of a whole house renovation I was doing, so no downstairs WC. I must admit the aftercare outreach team did afford me lots of aids, commode, purchase chair etc. But all the aids in the world do not help if you can’t physically move. This meant my poor partner was forced to be my carer for personal hygiene, food etc
Unfortunately this I think was the tipping point for us! She change rolls from partner lover friend to the carer. This is a year ago now and things have got a lot better but she’s still having to do things for me to a lesser degree but still in that roll.
Holding hands in the early days was the order of the day but even though I had been home a long time I still felt not wanted or I was a burden? and that was sad as I knew there was nothing I could do about it. I had and have still got brachial plexus in the left arm and should cuff issues on the right, but, I could manage a cuddle.
Moving on further I got to a stage where I felt I was physically sort of fit enough to take it to the next stage. By now I think my partner had been in her enforced toll for 9 months and mentally for her although she loves me very much the thought of making love felt wrong and the normal urges had not been awakened for so long that they have gone? We still hold hands and cuddle but bringing up the subject leaves her nonchalant now and if I do make a move ist met with resistance.
Like I’ve mentioned it’s not the only thing in a stable relationship but it’s important part, I’m not saying that relationships can’t survive without it, as unfortunately some people become physically incapable of participating and still have a happy fulfilling relationship. I am a person that wants that closeness from time to time, I don’t know what the answer is but I always hope things will return to normal what ever that looks like. Anyway if this generates conversation for those that didn’t want to ask or talk about it then that’s good for all.
I will leave it to everyone to think, add, or suggest things in general.
Best wishes BigH
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BigH63
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thank you for this post, your honesty and bravery in speaking about this is appreciated. It prompted a conversation between myself and my wife tonight. Your situation must be more unique with both you and your wife having been poorly. I am a woman, with a wife, so maybe I approach this a bit differently? I don’t know, but I certainly know the feeling of having to rely on your spouse for personal care. It was never a comfortable feeling for me, although I’d do it for her in a heartbeat. Maybe others will share advice, I’m only weeks home so haven’t yet crossed that bridge! But I just wanted to say thank you
Thank you for your reply. I’m glad it sparked a conversation between you and your wife, this was my aim to give this subject some light on the ICU recovery process, and open up a conversation generally and not be so Victorian in our approach.
I read your bio and you were hospitalised with nearly the same medical issues as me ( see bio) an apart from the Covid pneumonia which I had the year before my last hospitalisation in jan23.
All I can say to you it is a slow marathon that will win the race for all of us. We are all here to walk through this journey together and help each other the best we can
Please don’t take my reply as gospel! I can only talk from experience/ wife-to-husband’s point of view, with some physio thrown in. Please don’t judge me, I don’t need anyone to agree / disagree / like / dislike….it’s just a share of my experience, rightly or wrongly.
I can not entirely remember how long I was home for, before sex / intimacy got back on the agenda…..as initially, there just wasnt the strength, power, stamina, oxygen, confidence, desire, energy.
I remember deciding initially that life became about survival and sex / intimicy was a past memory - I resigned myself to just finding the beauty in every day, make one person smile everyday, rehab rehab rehab myself and just get as much function back as I could!
One day, I had a wonder if it all still worked? Not for the emotion of feeling turned on, literally to just see - from a rehab / physio / medical / point of view - can I still feel / get turned on / orgasm physically? I think I needed to work this out, like I approached every aspect of rehabilitation and getting this body back to a whole new quality of life…..I survived, but getting back to living life was a different story. So I initially tried myself, with the help of a sex toy as I just didn’t have enough power.
Once I got that physical trial ‘over & done with’, I wanted & needed to talk, talk, talk. I learned to ‘use my words’ more than I had ever done. We communicated. I asked what life was like for him, when I was in ICU, I listened to his story - his worries - his hurt - his point of view. We have always enjoyed sex / intimacy as a hobby, as an important part of us being us.
So we got more toys! For me, for him, for us both….we laughed, cried, failed, succeeded, no two days are ever the same …. but always got back to talking. We learned how to incorporate O2, got strong on boundaries and honesty, listened to podcasts.
Initially, we made time - set a specific date / time - this sounds clinical, and maybe it was! It was sex-rehabilitation time, and for us, setting time aside worked & was important as we both needed to be present, help eachother. And really, is it any different than setting time aside to garden, eat, watch a film, walk the dog 🤷🏼♀️🤗…..it worked for us. The goal wasn’t orgasm, penetration, the goal was to have time together / touch / relearn this new body / rehabilitate together.
Another thing we purchased, and I woukd recommend as a physio, is a ceiling hung (get a very decent joiner to hang the ceiling hooks!) sex swing. It assists the body so much, for both parties! It has been a total game changer (we do have children and have to wait for moments / ship them out / be inventive haha).
I am coming up to my 3 year ICU anniversary in July / Aug. Life totally changed in 2021. I dont compare myself to before 2021, as that has been / gone / changed forever. I dont expext to be 100% ever, not even sure what 100% means. But…..I shall continue to rehabilitate, learn, get stronger until the day I no longer have a pulse.
I am sure there is more, but I shall leave you with this snippet for now.
I think you definitely rid us of the Victorian perception of this subject lol. 😂
I totally agree with (there just wasn't the strength, power, stamina, oxygen, confidence, desire, energy, deciding initially that life became about survival and sex / intimacy was a past memory) it was all I could do to was think about getting well. Interesting you mention sex toys as I think they definitely have a place in this journey and also for people that can not engage physically for one reason or another, ( noted thank you, had not thought of that avenue)
On the lines of putting time aside for intimacy that does sound a bit clinical but if it works for you then great, who’s to say that can’t work for us if the discussion is not had? I agree it’s not about orgasm! It’s quality time together and to relearn like I had to learn walking and climbing stairs, in its basic form it’s another function albeit an all encompassing body function.
Along with sex toys the idea of a sex swing sounds intriguing! and hilarious at the same time, but very practical solution to the problems of physical ability I’m an engineer so that idea resonates with that side of my make up….(But has bought back memories of having the undignified experience of being stripped naked put in a sling of a hoist to hover over a commode with all my jewels hanging out and then just to cap that experience the sister asked the nurse if she could go underneath my hoisted body and take a pictures of my bed sores,🤷♂️ that’s not an experience I want to repeat)
You say (Life totally changed in 2021. I dont compare myself to before 2021, as that has been / gone / changed forever. I dont expext to be 100% ever, not even sure what 100% means.) I and others and relate to that see my bio , 2021 for me was Covid isolation ward November came out start of December then back in Xmas day with bilateral Embolisms on the saddle of my lungs then came out in Jan 2022, then January 2023 my near death ICU enforced holiday experience , so I completely understand the above comments, but more importantly your mind set moving forward! That’s a place I still have to get to, acceptance!
I’m full behind this comment and join you in that
(I shall continue to rehabilitate, learn, get stronger until the day I no longer have a pulse)
Thank you again for you’re suggestions and openness towards my questions on this subject
Hopefully I can reply in time moving forward that things are improving
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Issues with traceostomy and agitation 
Still feeling mentally lost after almost 2 yrs
10 months after induced coma
