I suspect that it doesn’t matter if you are ill or not for us all to recognise the patterns that most relationships follow, starting with not being able to keep your hands off the other, through to a much more mellow and laid back approach to not just sex, but our lives together. Back in 2012 I wrote a post where I was honest about what had happened to our lives physically, sex has not been part of or lives not for 12 years, something I am sure there are some out there who couldn’t even imagine, well neither could I, but PRMS and MS can find us living lives we never expected.
Until my PRMS changed everything I was what most people describe as a tactile person, I was never happier than just being curled up on the settee cuddling into Adam. I remember driving him mad as I couldn’t even hold his hand without constantly caressing his skin by gently rubbing my thumb over his, i did it without thought, he just couldn’t stand it for too long and would either clamp my thumb to keep it still, or pull his hand away. When sex becomes something you have no interest in and to be honest in some ways are scared off as you know your body doesn’t need an excuse to cause pain or jump into a flare, nor do you have the energy to even spare, well you start to avoid anything that might have the slightest possibility of even the thought appearing. Slowly I stopped curling up on the settee, partly quite honestly as it hurt, anything other than the most basic position that my body can’t object to is preferable over anything that might annoy, but mainly I was keeping my distance. Adam equally knew that pain was a huge issue for me back then, they were still trying to get my medications correct and I honestly can’t remember at that time even considering it anyway near under control and he was really scared of causing me pain. I don’t remember it being a sudden change, more something that just happened, we slowly started both keeping our distance with my PRMS firmly sat between us, ensuring that we never became close again. In the morning or anytime he was leaving the house he would give me a kiss and whenever I went into the bedroom to sleep, we would briefly cuddle and give each other a kiss, that was the extent of our physical contact on any day. If either of us were upset about something, from the minor to the major, we would lift the unwritten no contact rule, permitting an extra hug here or there, oddly almost always standing, but once the trauma was over everything slipped right back into normal. That was exactly where I thought we were just now, that our talking and discussing and reassurance of each other over the last few days was just another repeat of making things right in the minute, but something changed yesterday.
I don’t know why but I had hit a point in what I was doing on my PC that I didn’t really have anything to do, so I closed it down and joined him on the settee, he was about to go out but I just wanted to be sure he was OK. Somehow we landed up with him lying on the settee with his head on my lap and me stroking his hair, he was holding me tightly and despite the slight lift in my pain levels it felt right, for the first time in years it didn’t enter my head that I had to keep my distance, just in case. I realised later that was because I knew he was going out quite soon, but it showed me something that I had also been pushing away, the need to just be close to the person I love. You tell yourself so many things that don’t make sense and somehow force them into make some kind of twisted logic just to get yourself through everyday life and as time goes on, you even start to believe the story you’ve embellished. I have been blowing all contact between us out of the water because of a few times where the pain of just being held, was too much to bare. In my mind it had become a true fear that anything other than the lightest cuddle or the slightest squeeze of my hand was out of the question, not to even be tried as pain was the only possible outcome, when in fact it probably isn’t now that my drugs have my pain under control a lot of the time. Adam had given up sleeping in our bed, as he feared waking me because he has seen over and over what a couple of bad nights sleep does to me, but bad nights still happen even when he sleeps on the settee as he has done now for years and along with his fear of causing me pain, well we landed up avoiding each other in anything than the slightest physical contact.
If we didn’t love each other so much, our marriage wouldn’t have survived half the things that it has and if there is a single person out there that doubted us, well how much more proof do you need. Chronic illness will push you to your limits and beyond and if you can survive that, not just the illness, you can I am now sure survive anything. We are now in a position to rebuild our relationship from what has to be one of the most solid bases possible. I will always be in pain, I will always have days when I just need to sleep and even talking has to stop as my brain is fried, we can’t change that, but we can change everything that goes around it and make things better. There are still two things that stand out to me as beyond coincidence but that is what they are, firstly my comment of just over a week ago that the finer points of our relationships where missing from what I had written to date and the fact I sorted out everything I do online and trimmed two hours off every day, giving me much needed time to spend just talking, both done before our chat last Sunday that burst the dam.
This week has been exhausting and painful at times, but it has also been incredibly uplifting and refreshing, to not feel like the only true communication beyond everyday chatter was done through my blog, to actually talk about everything and anything we have thought of concerning ourselves as individuals and as a couple. I thought my illness had stolen far more than what it was doing to me and wrote about, it hadn’t, it was Adam and I out of misplaced assumptions and fears that had done that one all on our own.
Please read my blog from 2 years ago today – 24/01/13 – The measurement of now.
Thanks to the responses I had to yesterday’s post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year………
THIS IS THE MOST PAINFUL BLOG/COMMENT TO SHARE. 11 YEARS OF NO PHYSICAL SPIRITUAL OR HUMAN TOUCH, I FIND MYSELF SOMETIMES JUST STROKING MY OWN HAIR: DESPERATE FOR A GENTLE TOUCH.AFTER 11 YEARS OF SEPARATE BEDROOMS,BATHROOM RUNS AND BAD NIGHTS, FOLLOWED BY WORSE DAYS:I CAN’T SEEM TO JUST SAY”15 MINUTES OF TOUCHING AND HOLDING, IS WORTH THE PAIN. PAIN IS A CONSTANT, BUT HUMAN TOUCH IS A BASIC NEED. HOW DO WE GET OUT OF THAT “COMFORT ZONE” FOR A FEW MINUTES, WHEN IT IS SOMETHING TO CHERISH, RATHER THAN FEAR. HOW DO WE ASK FOR A BASIC HUMAN NEED, THAT IS THERE, FREE, JUST FOR ASKING. I FEEL SAD NOW LOVE YOU PAMELA…..NEVI