Sometimes things seem to happen for a reason, although those reasons aren’t always clear to start with, like loosing one job and actually landing up in a better one, an example of events that all of us have been through at sometime in our lives. I don’t think we ever see things as good, at the point they are hurting us, as they say hindsight is wonderful thing. As we grow older what does happen is we learn, we learn that nothing is actually as terrible as we first think it is, for me I can say the same about having MS. I think when I was first diagnosed like most I thought it was an almost immediate death sentence and that my life was over. I honestly don’t know what Adam thought at that time as I was hurting and confused, to to great a state, to be able to think about the effect on him. To me that now sounds terrible, I can’t believe that I was so self-centered and so self-possessed, that I didn’t think about him at all. Thanks to me wonderful memory I can’t even remember when it was that it happened, but I do remember a conversion where for the first time Adam broke down and really spoke to me about how he felt and how it was effecting him. We are both the same when it comes to talking about serious subject, we are avoiders, if you don’t talk, you don’t have to admit it exists. OK that is not always the best way to sort things out or to live your lives but it is just the way we both are, but one evening the walls all shattered and we spoke, we spoke from our hearts and the pain flowed out of both of us.
That was several years ago, but it was his declaration that night that he wasn’t going anywhere, that was to me a turning point. Although I loved him with all my heart and he said the same back to me, we had never before talked about the change that MS could have on love. Adam is 17 yrs younger than me and when we married he wasn’t if you like signing up to be a carer, I was very much young at heart and as if not more energetic than him, so I was scared that he would run away from me, not because he no longer loved me but because our entire lives and been changed by two words, Multiple Sclerosis. That conversation really did change things in my head and knowing, having it actually said with conviction and my having my doubts swept away changed a lot for me. I was suddenly free to put my energy into dealing with my illness, free to be honest about how ill I was on bad days, the feeling that I had to pretend I was OK, because it might be too much for him to deal with, was shattered and I was freed to really learn about, experience and understand my illness, even when he was there.
It was a major change in everything, if you are acting out what you think others can deal with, you are so busy doing that, that you don’t learn because in a way you are also hiding it from yourself. I had to do that all day long at work and I had been doing the same at home. For the first few years I was in living in fear of loosing everything my job, my husband, my life, suddenly I only had one that required me to pretend I was fine and that was work. I have said it before and I will probably say it again, getting to know your own personal illness is the first key to being able to live well and live a true life, not just a pain filled existence. I now knew I had his support now, and I felt free to talk to him, checking if he had noticed something happening or was it in my head that I was blowing it out of proportion. Having another set of eyes and another mind to work on the things that were happening was a huge boost, not just psychologically, but also physically, I didn’t worry about asking him when I truly couldn’t do something, to help me, nor to asking him for physically support when I found myself marooned in the knowledge that I was dizzy enough to fall but too far from somewhere to sit or lie down.
Reassurance that someone isn’t going to leave you, that they are committed to you regardless of and in the knowledge that they will have to be a carer and carry out all those embarrassing things that you never thought of, is probably the most important thing you can have. It doesn’t need to be your partner, we unfortunately aren’t all as luck as I am, but that commitment from even your family is incredibly important to have. They may think that you know without asking, they will be there for them, WE don’t KNOW. When you have had your future destroyed by a chronic illness you can’t take anything for granted from then on. I expected to work in an office dealing with statistics until my retirement, I expected to be able to do simple things like go out for dinner, go to the pub or visit friends and family. Nothing I had taken as my future was now there so why would my husband even want to be around to witness my demise? I need to hear the words and to any of you who are carers, partners or family of someone with a chronic illness I would ask you to vocalise your commitment, don’t expect us to know, everything we knew has changed, we need new expectations to replace the old and we need to know it 100%.