On Chronic Pain and Disability,On Everyday Life

What’s the best way to manage change?

There have been a lot of changes in our relationship over the last 2 years, some caused by this ruddy covid thing, and some caused by my disability, but one thing we have become pretty good at is working out how to manage them. But first of all let me add a teeny tiny disclaimer: What works for Mr H and I may not work for everyone – but as they say if you don’t try you’ll never know! So that said, how do we manage change? Well, we Assess, Adapt, Assess, and Adjust……. let me explain.

Assess what needs to change.

There has been a loss of intimacy, and connection between us, this has been caused by a number of things but the result is we were going through the motions of our D/s without ‘feeling’ the D/s. Within the kink setting, Mr H and I have really missed our hotel stays and going to the munches. We have missed the time alone and because of the inability to be freely intimate at home our sex life has been affected too.

I’ve spoken in the past about the challenges of having an adult child living at home and many of you have expressed similar issues. There is a certain freedom to being in a hotel, being anonymous in a way, that allows us to play with more freedom and relaxation than is possible at home. I swear our son has a sixth sense when it comes to us even thinking dirty thoughts… no sooner has it gone through my mind to give Mr H a blow job than we hear his bedroom door open, close, the bathroom door open, close, then open, close, and then he heads downstairs…. you get the picture. Essentially the moment, the mood is gone…

We needed to get back some alone time and so when the hotels were open again in the UK we booked some nights away, however, the lockdown had not been the only thing that had caused our lack of intimacy, my chronic pain was also a massive contributing factor.

Mr H has become my carer and in having that caring role thrust on him by our situation, his role as the lover and partner changed, became secondary. He spends so much time advocating for me when I am unable to speak from upset or pain, and focused on how much pain I am in, it is difficult for him to let those concerns go and relax. Any sexual activity is overshadowed by concerns like, am I comfortable, how is my pain, is he making anything worse…..

We spent some time talking about all the things we were not happy with and working out what we needed to adapt in order to make the change happen.


One of the things we needed to do was accept that my disability was not going away. Don’t get me wrong this isn’t an easy thing, and isn’t something we wanted to do, but there is no magic pill that will take away the pain I live in, and there isn’t a plan for surgery. There are too many of my joints causing pain. Spinal fusion is rarely done in more than two vertebra and I have five causing issues in one way or another. Therefore there is a risk that if they fuse one it will simply cause more problems in the joint above and so on. Instead the focus is now on helping us to accept our lives as they are, adapt as much as we can, get as much independence for me as possible and practical, and find a medication regimen that keeps my pain at a manageable level. We have to change our view of the situation, because we can’t change the situation – if that makes sense?

This is of course a work in progress. Accepting being disabled isn’t easy. Losing the ability to jump in the car and drive myself to the shops, is not an easy thing to adjust to. But, it is something I am going to have to do.

Now, as with all situations, there is always a number of little things to change and the trick is to break it down into manageable pieces.

Starting with something simple.

Very early in our D/s we began a ritual of changing a day chain for a night collar and as I gained weight my collar became too small. As my day chain was safe to sleep in we simply missed the exchange but continued with the verbal exchange. As with many things, when one thing changes, it becomes difficult to maintain the rest, and without the need to put on the night collar Mr H would often forget to instigate the verbal exchange. We realized that we need a collar to help us maintain that ritual, and so Mr H made me a new night collar. Since then we have successfully re-established the routine of the collar exchange.

Building Intimacy: step by step.

We hoped our nights away would help us to reconnect on an intimate level.

Unfortunately, the first hotel stay was in a room that is mean to be disabled friendly….. I say meant to be.

The advert said ‘height adjustable bed’ it wasn’t. There was no adjustment to it… none at all and it was really low. Now if I was unable to stand and had to transfer from a wheelchair to the bed, it would be fine, but, when you struggle to stand being low is not good. The bed was also a standard double (4’6″ wide) and yet every other bed in their chain is either a King or Super King… why they think a disabled couple wants a smaller bed I have no idea! Oh, and the room had a door connecting it to the next room – which freaked me out. Mr H put a chair with a lamp on top of it and I still struggled to sleep.

We were home by 7am.

Our second hotel stay was not much better. We arrived at the hotel later in the day, and the disabled parking was full (two of the bays taken by vehicles not displaying disabled badges) and the hotel had no lift. Thankfully they moved us to a ground floor room. The room above ours was filled with stampeding rhinos or something of that ilk and the journey round to the restaurant was uncomfortable, with uneven paving and large lips at the door ways. Mr H did get his floggers, the squealer, and crop out for a play, his concern over my comfort meant he called halt to play long before he would have in the past.

Assess Again.

The proof is in the pudding as they say – although who they are I have never worked out…. Anyway, the new collar has certainly done the trick. We do the ritual twice a day again, and it is nice to have that moment back.

Our nights away didn’t really rekindle our intimacy in a way I would have liked. There are so many things that are in the way of our relaxing into it.

There is the pain side of things, and Mr H’s fear that he will make the situation worse – which he won’t – I may be more tired but we have been assured my spine is stable.

There is the pee problem, where on occasion I don’t know I need to pee, so we have to put mats on the bed not because of the fun squirting orgasm, but because I might pee. This is one of my biggest worries. I know water sports are a legitimate kink and I do not judge anyone who enjoys them – it is not something I enjoy.

Finally Adjust….

Over the next few months we will work on spending more time alone, and trying to build confidence in what I can manage comfortably. Unfortunately the majority of that lies on Mr H as he holds these worries and no matter how I reassure him, he is the one who has to believe it.

Making a change in mental belief isn’t easy but this is what Mr H and I have to do. We have to stop ourselves from focusing on the worry we have in order to relax and enjoy our time together.

We are not away again until our anniversary in September and at the moment I am very unsure of how this will go. We have a lot of work to do, change is slow after all and we will continue to assess and make adjustments, so that ultimately we can reap the rewards.

Sweetgirl x

Sweet Autumn Rose  


planing for change
Photo by Bich Tran on Pexels.com

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  1. David says:

    Good to read the way you are both adjusting to your situation, feels like a very positive post. Excellent! Yep, adult child at home is not good for the ability to relax……..

  2. Learning to live and interact when one or both have a disability is a challenge. Like you say, assess, adapt, assess, adapt, and overcome step by step. Thank you for sharing. I am not or I should say we are not in the boat alone, are we?

    1. We definitely are not!

  3. Sounds like a lot of adjusting and adapting for both you and Mr.H, Sweet, but through all your words I read the hope, and I know you will get there, because both of you want to! Take care.
    ~ Marie xox

    1. Thank you I’m sure we can and will x

  4. HeartsHope says:

    *hugs* That hotel sounds awful! Often the disabled are either seen as inferior (and thus not deserving of the same quality accommodations as everyone else) or are invisible. I stayed in a disabled room when traveling with my sister once, and the only thing disability accessible about it was the bathtub. The staff had been using it as their smoke room despite it being non-smoking, and had even put rags in the sprinkler so they wouldn’t set it off.

    Amazing how something as simple as changing from one collar to another can have such a positive impact. 🙂 I’m glad you both have regained a ritual that obviously means so much to you.

    Adjusting and adapting can be a challenge. Dad always said he had the body of an 80-year-old (in his 40’s) but the mind of a teenager. Adapting to his disabilities was hard but he made it work. I know you and MrH will come out the other side just fine.

    1. Thank you HH xx the state of accessible rooms is ridiculous. Most hotel chains that we have contacted only do accessible rooms with two separate beds. I don’t know why they assume a couple would want separate beds because one or both of them require the disabled facilities?!?! But it’s infuriating..

      I’m sure we will too

  5. Everything is so problematic in this life. I wish you good health and Mr. H patience.

    1. Thank you he needs it!

  6. I love these steps! Sometimes I feel like all you need during change is to slow down and really process what’s going on. What a great way to do that!

    1. Thank you

  7. […] What’s the best way to manage change? […]

  8. Thaniel says:

    I just happened on your blog one night wandering the web, and I’m so glad I did! I struggle with chronic pain and medical issues as well. The effort to maintain an intimate life is unbelievably complex and draining at times and I draw energy from hearing other folks out here also fighting the good fight.
    Best wishes,

    1. Thank you.

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