Yesterday I wrote about the bad side of Adam’s adjustment to ‘OUR MS’, well it is only fair of me to balance this with the good things that came through his adjustment period. If you think about any relationship it is often easier to remember the bad things, not because you are looking for them but the good side is what brought you together and keeps you together, sadly the good thing become everyday and often unnoticed for that reason. If someone says to you daily ‘I love you’ it doesn’t lessen the meaning or feeling when heard, as I know my heart still swells with it every time I hear him say it, but it does mean that 10yrs later the fact it was said daily leaves it lost and unremembered, we remember what was different from now what is the same. It instantly sounds bad when I said he would go out drinking and not come home until drunk, yet when we were together at weekends everything was great, he was caring and loving and a better husband I couldn’t of actually hoped for. The time together was wonderful, if I hadn’t had MS and if he had still been going out with his colleges nightly, I probably would have been with him and his drinking would have been less not because I would have stopped him but because we would have gone home together, just as we did before. Before my diagnosis we shared our social life, that sounds a little as though I stopped going out because of my diagnosis, it wasn’t like that, my diagnosis came after I had moved into the progressive stage my going out for the evening had tailed off as my energy did, I had to save that for work, so Adam went alone.
Weekends brought us together and any anger that I had slipped away, we were together then and it made up for the days before when things had been strained between us. At the weekends we would be just like any other couple, MS was only talked about or mentioned when it had to be, even thought there was no denying it was getting worse. My MS was jumping forward at silly rates at times, there is a two week period that left me and everyone round me, that Adam loved me totally and what was happening to me was tearing him apart.
It started on a Saturday morning when I told him that something I had eaten the day before was still stuck in my throat and I was having problems breathing. It was the start of two weeks were he later told me he thought I would die, strangely I didn’t and I found myself reasonably calm, which probably helped me a lot. He took me to the emergency department were the offending plum skin was removed, but they weren’t happy with me at all as even after removing it I was still not able to breath properly. I was taken to a ward which had single rooms, Adam came with me looking as white as paper. I still remember him not holding my hand, but squeezing it tightly, he seemed to not want to let go even to let me move into a bed from the wheelchair. I don’t think there is a human on this planet who if they had seen him then, could of had the slightest doubt of his love. Every second the hospital would let him, he was there at my bedside.
That was a major trauma, but I have seen and felt more times than I care to admit, were he has held me as I can’t hold my balance, taken the weight of my body, as he has led me to where it is safe to lie down or sit. Held me simply because it is all anyone can do, when I had sever twitches and spasms, sat with me until they had subsided and comforted me when I can find peace no where else but through him. Not once has he left me to struggle, other wise when I have told him to. Not once has he shown that he is fed-up with the tears and frustrations that build up in me and take over. He takes his time constantly to keep my life calm and ordered, as he knows better than any how change and disruption heightens all my symptoms. He checks on my constantly as he knows that OK now, may be hell a minute later. He watches and he supports, he cares and loves, he cleans up and sorts out, he fetches and carries and he does everything he can to help me through the whole mess. Not just when there is a flare but every day, from his waking to he sleeps he shows me nothing but love. The word Husband or carer, is beyond what he is as neither touch the surface of what he is to me.
A partner or carer is expected by those outside of the situation to do all these things, as that is there role, but no one has trained them, they haven’t spent years studying, gaining degrees. They have no better idea than the person who is ill, what is the right or wrong thing to do, what is to be expected or if there is something else wrong. Unless you are living in my side of our partnership or my husband, it will be almost impossible for you to truly empathise with either of us, I can only give you a window to glimpse through, but both sides of this relationship will kickback at it from time to time, it is natural. So if you are there right now don’t guilt trip yourself, you are human not superhuman.