One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the elevator is slow. Having to lie there and work out which option is viable, isn’t really what you want to do when your bladder is screaming at you to get on and move but still half asleep with an instinct to pull the covers up and drift off again. My bladder control isn’t brilliant like most people with MS, no matter how much you may think you can wait, it is inclined to disagree and then takes the opportunity to prove it. I decided to go with the elevator system, which by the way is working perfectly ever since I attacked it and tightened all the straps I could find, it hasn’t stuck once. 6:45 am and I had been ejected from bed and having moved as fast as I could, I was awake with yet another decision to make, go back to bed or get dressed and make it the start of my day. Nothing ever seems to have or be a simple choice, within in 5 minutes of waking I was already in my usual system of working out energy usage compared to which would work best for me and the rest of my day. Taking into account the everything, I opted for staying awake as it would take away the struggle of getting back into bed and out again, all I had to do was get dressed, something required in both options. I didn’t mean to wake Adam but I guess I had done when I went to the loo as I did notice a great lack of snoring once I was on the move, yet I had heard it clearly while still lying in bed, he had once again spent the night on the settee, regardless of walls and doors I had heard him the second I woke. As I settled myself onto my chair and turned the computer on, he sat up and turned the TV on for me, the first light I had seen other than when I opened the fridge to fetch my glass of coke, the day had begun for both of us.

Last night I wanted to go to bed when Eastender’s finished as I was in pain and tired but I stayed up as it was so nice for the pair of us to actually be really watching and communicating about a scheduled program. It wasn’t just the program but for some reason Adam had shifted from his end of the settee to lying propped on a cushion in the centre of the settee, bringing him within inches of me, instead of out of reach. It’s funny how unlike what I see in other families we are, we rarely talk about what we are watching, long conversations are started by it, but always they turn into what we know from our own lives, rather than what the program is telling us. I actually think that all to often both of us avoid talking about what might be called important subject, unless the TV gives us the option to do so. Despite having been married for 13 years we still gently walk around each others feelings, not getting into conversations that we know will upset or hurt the other, even when we know they are things we really should talk about. So we wait, well I do, I can’t talk for Adam as I have never asked him, but I wait for the door to be opened by an actor giving me the cue to take over. Once you are chronically ill, talking about the big subjects, the things that effect both our lives are all to often not talked about at all. Yes we talk about the small things when they are happening, we communicate but don’t really share much beyond that moment in time.

No one could spend all day every day talking about all of the painful subjects that come with bad health, in fact I think we might actually talk about it less then other people do. There is always those few hours when a doctor trigger a subject that we will then talk about, but it is almost as though we seal it off at that point and dismiss it as discussed and done. As people grow and life changes us, our opinions change, but somehow those closed subject still remain closed. I don’t have some major thing I want to talk about, that isn’t why I am writing this, it is far more a case that I wish the doors to every subject on both our sides could be open, without the danger of hurting either of us. I don’t think this is something totally unique to couples who are living with a chronic illness, I think that many many couples have the same taboo areas, places where because we don’t want to hurt those we love, we avoid, it’s just when one of you is dying, there are more painful places available to go. For me I know one of the problems I have with talking about anything serious, is the limited time we have together, when you only see someone sometimes for as little as two hours a day, simply because of sleep, those limited time slots have to be happy, not spent in tears or turned into even worse possible anger. My relationship with Adam is my world, he is the person who keeps me connected to the outside world, tells me his stories from work and lets me know that life goes on outside my world. A world that he is the centre point and as such the person I want to protect from anything painful, it is my nature and what I see tells me, it is his nature too.

There are so many things about living with someone who is housebound that I can’t write as they would have to come from Adam, I can only ever give my side of everything. I can only guess at the pressure that it puts on him, it can’t be easy to have someone who relies totally on you for so many things, but the one I guess must be the hardest is the fact I rely on him for much of my happiness. Yes we are married and yes that means we are in a partnership, one we vowed that we would care for each other in sickness and in health, but neither of us saw this coming and I don’t care what anyone says, it is a partnership that is totally unbalanced, as I can give so little to it, at all.

I have at last managed to work out my energy bills for the last year! It has taken Npower that long to give me an accurate bill and following my phone call earlier this week I now have the full picture. I have to say firstly how nice it was to find that at last they are using one of the most basic system on there phone server, the call back. It used to be part of my job to program and care for the phone server and it’s so basic and such an old addition that I have never understood why others didn’t use it. I made my call, the system asked if I wanted a callback and I accepted that option, no listening to loud music, no getting a painful arm holding the phone while I waited, I just hung up and they called back with in 15 minutes, brilliant! Anyway it turns out they had sorter the whole problem out, the issues was it was in three separate bills and only the last was on the web site, that is now fixed and at last I can say I am happy with everything. Even happier to now be able to see that my measures of energy saving I have been working on for 3 years has totally worked. I am guessing I am one of the few people in this country with bill that have only gone downwards over that period, in 2011 I was paying £86 a month for both electric and gas, in 2012 £78, 2013 down to £71 and now I have a price fix for 3 years at £67 and this is the first time I have used a deal. It is a lot easier than many think to keep your bills down, first step don’t use lights you don’t need, my TV lights the room, I have one storage heater in the hall and it heats the entire house, I set it daily to match with the weather forecast. The washing machine, tumble dryer and dishwasher, all used year round are used at night during the cheap rate and I don’t open the curtains from the start of winter right through to spring, even thought we do have double glazing. They are small things but once you are used to them, it’s a simple why to live and it keeps the money in my bank and not theirs.