Valentines

Thursday morning, another week heading off to an end, and yes I do know it is Valentines day. To me it is one of those over hyped days that is due only one thought ‘forget it!’ I really don’t get the worlds desire to follow like sheep and spend money or things that no one actually needs, if you want to tell someone you love that you love them, then just say it, everyday! I just realised how grumpy those opening sentences sound, I’m not grumpy just making a point, because I can. Love is incredibly important to all of us but I think it takes on a new importance and validation when you are chronically ill. Although Adam and I make a point of saying “I love you” several times each day, and although I smile and feel lifted by the words I know in my heart just how much he loves me, without any words at all. He is still here!

I have read so many blogs of others who like me, have a chronic illness, where the writer is totally alone. Their partners simply couldn’t ‘cope’ with them being ill. No matter how it is worded or what the excuse attached, I personally just can’t see anything but a person who has had their love challenged and it came up short, they didn’t really love partner, it was just a convenient way to live and when that convenience became anything but, they have left, there was no depth to their love. That may be a sweeping way of dealing with all the reasons they gave, but I always come back to that core point, they didn’t love them. If you truly love someone, I can only think of just a handful of reason why ending a marriage would be the right thing to do.

I have tried many many times to put myself into Adams shoes and see what he is feeling and going through because of my illness, and I have in the past written in detail how he took the initial news and how he went through a long and painful adjustment. But he went through it and he stayed, he has told me that he never thought of leaving, he loves me and he had married me. My illness was all part of the deal, all be it not one either of us expected. I know in myself if it had been the other way round, I wouldn’t have questioned looking after him, just like Adam I would have seen it as a totally unfair thing to happen to us, but never a reason to leave.

If you are lucky enough to have the love of someone who truly loves you, it does clearly make living with chronic illness much easier. Just knowing that they are going to be there with you throughout what ever is going to happen in the future, give you an amazing strength to call on when needed. Although so far there have been few times that I have physically needed him to just hold me, while I went through bad spasms which have debilitated me totally. Having him supporting me physically was boosted beyond that, as I couldn’t only feel his arms, I felt his love and that gave me just that bit more belief that I can survive all of this with him by my side. My body lets me down frequently and when any of the list of embarrassing things that I don’t like happening when I am alone, happen when he is here, he just takes it in his stride and assists where needed with no sign of disgust or reluctance to help me. If I try to stop him he answers the same thing every time, that he is my husband and it is his job as such to do these things. It is hard for me to imagine the rest of my life without him and when ever we talk about the inevitable end stages he clearly doesn’t even want to think about it, far less talk about it.

So it is Valentines day, so what. It’s Valentines day every day when you have unquestioning and unlimited love by your side, in your life and in your heart.

The Elephant in the room

I used to believe that life was written out for you in advance and that what happened to you was really not in your control, all you could do was go with it and survive. It’s strange how you change as you grow older. Although I don’t think I am following a script any longer I do still believe that things happen for a reason and we just have to work out what that reason is. With everything that is happening in my life now between Twitter and here I often wonder if this is why I have MS. I seem somehow to have developed a talent that I didn’t know I had, to inspire people and to reassure them that life is never over, until it’s over. I sort of fell into this and there was never a great plan of what I was doing other than I gave myself a couple of simple rules, the first that I told and wrote nothing but the truth, as I see and feel it, the second that I was going to do thing my way and not follow the crowd. So here I am suddenly with so many people reading what I write that keeping up with them all is almost impossible but I do what I can, when I can.

I have to say that all of this has really gives me a huge boost everyday and confirms constantly that having something, anything that makes you feel you are achieving, that there really is a purpose to your day, you will be able to manage your illness better as well. At times I know I make it hard for myself writing the things I would rather not think about but for me it can actually help at times, writing it down helps me process it all and settle it in my mind as well as lay it all out so that others can read what really happens.

The reality of last weeks visit to the hospital is I am still not back to normal, last night I again couldn’t stay up and only managed to stay awake as long as I did because I was watching TV with Adam. I actually really like our evening together, just sitting in the same place at the same time brings a closeness that we really don’t have as we used to. It is hard to do things like curl up on the settee together, I can’t physically get comfortable in anything less than sitting or lying out flat, pain isn’t only when you move around the pain is there through everything, just the simple thing of having a cuddle is painful. I haven’t written a great deal about the effects of chronic illness on a partnership and I feel that maybe I should as something like MS is not just a personal condition it is a life condition for all those who are around you and care. We hadn’t even been married for a year when my health nose dived and it was as hard on me, as it was on him. Both of us were helpless and both of us were in our own personal hell, while we both tried to adjust. I think it could have been easier if we had possibly talked about it more, but MS was the Elephant in the room and neither of us wanted to anger it. I think that is another reason that I would have liked to have an information pack at diagnosis, as reading it would have given us focused point to discuss, rather than wondering around each other trying hard to pretend nothing was wrong, individually reading up about it on line, when the other wasn’t there. I guess that is how it is for many, there seems to be little point in talking, as talking wasn’t going to change it or heal it. So we both silently tried to work it out in our own ways, finding information that was different from the others and expecting very different things of what the future might hold.

Those first couple of years although I was ill, life did carry on very much as it had before and we talked less and less about what was happening to me. I have heard all to often that marriages don’t last past that point, too many times I have been told that the partner left, so I am more than lucky that we survived as we have. Yes it did worry me that we wouldn’t, and there were times when I wondered if we would be split by it, but we survived. No matter though how much we love each other, MS is like having a third person in the marriage, it has a say in everything, and neither of us can do anything about it.

marriage, partner, partnership, love, talking, together,