Having to work in a different order today as I don’t know when the ambulance will be, it could be any time after 11am which will cut my day right through the middle. So it has to be write first today and fit the rest in where I can. I have done what I was asked to and had a lighter breakfast than normal and there is now no food until I get home. Breakfast has given me what I bet is a false hope, as within minutes of eating I had terrible pain in the right side under my ribs. False hope, well regardless of the pain I would bet almost everything on them finding nothing, and I will be handed another piece of paper telling me that it is down to my MS.
I have noticed over the last week or so that instead of my long hoped for return of not sleeping for most of the day, that I am actually still heading into needing more sleep. Although I haven’t given in I am tired and ready to sleep most evenings by 8pm, which is just taking it a little too far! It is odd how our brains work on these things, why am I OK with sleeping at 9pm but want to fight like hell to no go to bed any earlier? I suppose it is really down to my wanting to spend time with Adam. When he is working some days due to the level of work he doesn’t get home until around 7pm, seeing him for just an hour a day just isn’t on. Chronic illness puts all kinds of pressures on a relationship and this is just another of those, but to me it is an important one. You don’t realise when they give you your diagnosis that probably one of the hardest and most painful thing that lie a head is what it does to you marriage. From what I have heard all to many marriages don’t survive. Some partners just can’t cope with all the extra work that falls on to them and the never being able to have a social life. Others can’t deal with watching the person they love disappearing, others still can’t accept that the sexual side of their lives will go and seek it else where, and I am sure their are many other reason out there, these are the ones I have come across. I am luck, so very lucky that Adam has adjusted to our position although it took him longer than it did me, but the important thing is, we are still together.
We have talked many many times about what lies ahead of us, but some things are still very difficult to talk through as well there are things so personal to you, that talking to anyone even your partner isn’t always easy. Adam has told me repeatedly that there is nothing that he wouldn’t manage and he is going nowhere, but with our future so uncertain, having no idea what will happen to me in the years to come, makes that promise one that could turn out to be impossible to keep. Adam is 17 yrs younger than me but we like everyone else assumes that his health will remain good, but assumptions are dangerous things to make as the future is out of our hands. The problem with a partner being a carer is the pressure that this puts on them. Adam is now the chief bread winner, the cleaner, the cook, dishwasher and carer, everything that needs doing, he has to do. That kind of pressure I am sure causes many of them to become ill as well, then what? I know that none of this is Adams fault and to be honest, I feel guilty that he has had to become a different person because of me.
When you are ill your partner become even more important and even more loved, but that illness makes it harder and harder to show that depth of feeling. I tell him several times a day that I love him, but I can do little to show that love and feeling. That love for him is a difficult thing to find ways to show and it seem to become harder and harder, not because I want to pull away from him, but simply because of my health. Even something as simple as a cuddle, can cause real pain, cuddling up on the settee is a total no for less than a few seconds, all those simple tiny things that we all do because we love someone, like cooking their favorite meal, disappears as time goes on, because it gets more painful and more difficult. Imagine how you would feel if your partner suddenly became a person who did little to nothing other than sit there or sleep, how would you feel? If the tables were turned I know I would still love him and I would do everything that he does for me, but I know I would feel unloved at times, with little to no physical contact it is hard to not feel that way. We are tactile creatures, we need contact with people not just words.
Relationships can be hard when you are fit and healthy, they are harder still when you are not, that is a fact. But they are so worth working on in anyway that you can, as I really believe that loving and being loved is the thing that keeps us all going, without it, what is the point?