My decision yesterday to drop the third blog is looking to have been a good idea, yesterday evening felt totally different and I woke this morning feeling more refreshed from my nights sleep than I have done all week. It is so silly how such a small thing can make such a big change in my health.
A couple of days ago I received a tweet from another MSer who sounded distressed and she was clearly lashing out as we had spoken before and the tone of her post was totally different. I tweeted her back but it wasn’t until yesterday that I heard from her. I had by then pieced together what I think had happened as I recognised it.
I have had many years now to get used to the fact that the rest of my life is to be spent in the company of MS and it’s friends, but I can still remember the months just after the truth was known and how I read medical page after medical page, scared myself silly and crying more tears than I care to remember. I devoured anything I could find, searching and searching for the one thing that no one will or can give me, a timeline. The fact that I couldn’t find anywhere a list saying what I could expect at what point and how it would affect me, made the whole business of adjusting even harder. I wanted to be able to sort out my life in advance to deal with each phase and each step on the path to what we all, ill or not face eventually, death. In many ways looking back to that time, the more I couldn’t find one set place with clear absolute answers, the more frustrated and the worse my ability to cope became. I went through several stages of lashing out, times when I gave up for a while, then kicked myself back into life to just a few weeks later to give up again. There were periods of denial, when I tried to pretend it wasn’t happening to me, that they had got it wrong. That adjustment stage is terrifying in every way and the worst thing about it, no matter who you are with or how much they love you, you feel you are alone in a battle that no one else can understand.
I wouldn’t try to tell any newly diagnosed person how to handle that phase as it is totally something you have to travel through and find your own answers, I can though empathize as it is truly horrid. The people that I would give advise to, is their friends and families and that advise is very very simple. Be their, listen even if it is the 20th time they have gone over the exact same symptom or concern, listen to it again as if you have never heard it before, hold on to them, let them cry, let them get angry and don’t get angry at them. Don’t give stupid advise like telling them to be strong and positive, right then they aren’t and they can’t be, they are grieving, grieving for their own life and just as you would grieve for a loved one, they need to be allowed to grieve and they need to know they are loved.
There is no set time that grief lasts and to be honest, I do still have spells of grieving, times when I will seem to cry for nothing but there is a terrible sense of loss, it passes and life continues. Just as life has no preset timeline neither does illness, you have to make the most of every day you have, as if nothing has changed, achieve that and the rest will follow, and that would probably be my advise, if I had to give it, to everyone regardless of their health.