We have now been without our settee’s for a week and I really can’t wait for them to come home again. Despite the living room looks totally wrong without them, I was at first surprised that I was finding myself walking around the area’s they filled, rather than crossing is, but as I have known for a long time, I don’t usually rely on my eyes to know where I am. I actually managed the other morning to walk over where one of the normally sits, I couldn’t believe how soft and springy the floor felt, when we laid the carpets, I insisted on good underlay but it appears that in the past 12 years, it has given up the ghost and become a pancake, I guess nothing lasts forever. It’s odd how short a period our homes are actually in that perfect condition that we somehow believe they will remain in, somewhere in my head I still have this belief that we shouldn’t ever need to replace anything, it should last as long as we do. Even the gas engineer exclaimed that our fire was really old when he arrived to service our living room fire the other week, not to me, we only bought it 15 years ago. I can’t quite work out if it is just I am living in a bubble or I am refusing to let what surrounds me age, as that would mean I am aging too.

When they took away our settee, they managed to lend us one chair as other than the office set I am sat on right now, which by the way, is broken or the dining room chairs which aren’t that comfortable we have nothing to sit on. This has meant that I spend my evenings sitting on the old fashioned wing chair which I had to cover with one of the throws as it is the most horrid colour and smells a little odd and Adam has taken to sitting on the floor leaning against a pile of scatter cushions, which he assures me is comfortable. After having just relearned how to sit as a true couple, actually touching each other rather than either end of a long settee, suddenly we are separated again. Clearly I can’t sit on the floor with him and he has tried every different possibility to find comfort closer to me, we really have no other option as to what we can do. The other evening he suddenly appeared kneeling beside me and places his head on my knee, for some reason it felt totally wrong, as though he as a child trying to gain my attention, but I understood that he just wanted to be close and there was no other way we could be at that moment. It made me remember though just how long it has been since I was able to cross the width of settee that kept us apart and sit leaning on him with his arm around me. I used to love those evening, doing nothing other than cuddling and what ended it was my PRMS and my awkwardness about flipping the position along with Adams fear of causing me pain. I worked it out a long time ago as to why I felt it was wrong, it was down to a stupid problem that existed in my head and is still there to some extent caused by the age difference between us. Adam is almost to the day, a year older than my son Jeffery and the last thing I ever wanted was for him to feel that I was treating him like a mother, rather than his wife. Clearly the age difference does show itself occasionally, but it is normally in nothing other than knowledge, so yes I am sure he would agree he has learned from me, but that is no different from any relationship, we all learn from each other as we all have different experiences, clearly on that level I do have rather more than him. I know I have failed at times and I have if only in the tone of my voice, but not in my heart, reacted more in a motherly fashion on occasions. It doesn’t matter if it is today, or from when we first became a couple, if he comes to me wanting to cuddle up beside me, well it somehow feels wrong because of I suppose my past. The only people who have ever cuddled me in that fashion are my children. I realise now that this is going to have to be something that I have to get over, as I become more and more unable to lie in any other position other than like a plank on my back, that the only way we can be close to each other is for him to come to me. I have tried in the past to reroute those feelings and failed spectacularly, but unlike my home, I know I can learn new tricks and keep up with the world. The old fashioned protocol that say men don’t display affection in this way are long dead, just because I can’t switch us into something I am comfortable with, which is what I did in the past, means I have to be comfortable with the new ways things must happen.

When you are diagnosed with a chronic condition, you never think forwards far enough to see all the small, but extremely important thing in life that will have to change. Being ill every single day of your life, is nothing like being laid up for a few weeks, it is like some kind of insidious caterpillar that munches away constantly at the edges of everything. Nothing is that big or that small that it can’t nibble bit by bit through your entire life, you simply don’t believe that it could possibly remove so much of your life. Yes, you expect things like having eventually to give up work or becoming housebound, but you don’t even think that it is also quietly nibbling into every single relationship you have. That the day will come when just having a cuddle or a simple kiss can be turned into either impossible or painful or that you will have to rethink everything you have learned about how to live. Eventually, it will nibble away until there is nothing left if you let it, I am so glad that at least one thing is now slowly being surrounded by a fence that it’s no longer allowed to climb over. The love Adam and I have for each other has taken us through now 10 years without anything beyond small passing displays of affection, just enough to have reminded us daily that we love each other and need each other. I don’t believe either of us saw what was really happening and that my PRMS was sitting there laughing at us as it thought it had won. We can’t go back and fix it at the points where it went wrong, but we can learn how to work around what had become an impossible line to cross, enough for both of us to get the affection we both actually need not to just feel, but to show.

Ill or not, life can distort thing, change them from what they were into something totally different, we have been lucky to have a second chance to sort it now, many marriages wouldn’t have survived the life we have been living for far too many years. It is now clear to me that one of the side effects of pain is a desire by both members in that relationship, not to make it worse, but just because yesterday holding that hand caused pain to great to bear, doesn’t mean that today the same will happen, every day has to be a new discovery of what it possible, not a memory of the impossible.

Please read my blog from 2 years ago today – 10/02/13 – Not all symptoms apply

Every step of living this housebound life has seemed easier than I had expected, I’m not sure what I thought would happen or how my life would turn out, but I never thought that I would be as content in my life as I am. So when the Dr on Friday started reeling off the list of things he thought might be of help, as they couldn’t do anything about my pain……..