Change isn’t always the easiest thing to accept, especially when that change means your entire world has been ripped away from you. You would think that by this point in my life, having been so ill, for so long, and having lived what to many appears to be a more than bizarre life, that change would now be easy. It’s not. Oh, I know, that I seem to have dealt with it all in my stride, but appearances are often deceptive and in my case, I’d say that it’s a wonderful deception. Not that I am trying to deceive anyone, it’s just the way that it’s happened. At first, like everyone else, I put on a face, I thought I was doing it to put other people at ease with what was happening and so that I could just get on with life. I had a job, a responsible job and if my staff thought that I was crumbling in my office, well life was going to be hard. I had brought that all into a meeting just days after I was diagnosed and told them what was wrong with me. I thought it important to do so, as I didn’t want gossip flying around, or the possible thought that I was drunk in the office when I wove my way up the call center. I suspect that bravado is what gets all of us through those first weeks and months, but, there is one person that doesn’t work on, ourselves.

I wish that I could sit here and type out a piece on how to get through that time, the things to do, the things to say and just as importantly, the things not to. I can’t. That is an incredibly personal process, not something that is universal in any way. What I can tell you is, it is without a doubt the biggest mental shift that you will ever have to make. A short while before, regardless of how you felt healthwise, mentally you saw yourself still a fit person. You still saw your life trailing out into the distant future and it held all the dreams that the average person has. Depending on your age, those things vary, but for most whatever our dreams are, they are the dreams of a physically and mentally able-bodied person. The idea of climbing Everest might not have been in your head, but if you decided to, you could. You could do anything and everything that life put in front of you, there was nothing to stop you. Then that diagnosis arrives and life stops. Stamped right there in the middle of your forehead is the word, “disabled”. It doesn’t matter what you suspected, or thought might be wrong, you walked into your doctor’s office able-bodied and left “disabled”. This is without a doubt the biggest change that anyone alive has ever had to deal with, short of becoming paraplegic and you have to make it.

Bang, it feels as though everything you dreamed of, has been wrenched out of your grasp and has been replaced by that stamp on your forehead. Not only have your dreams been snatched away, but so has any chance of a normal life. Work, family, home, nothing is ever going to be the same. So how do you deal with it? How do you put things back together? How do you do anything ever again? It isn’t just about change, as change means replacing one thing with another. At that point, there isn’t anything to replace it with, you’ve lost everything and how do you possibly replace all of that. Personally, I would recommend not even trying. No, that isn’t the same as giving up, it just means that you stop and you get used to the facts, you allow yourself time to absorb the truth of what has happened and you grieve. That’s where bravado comes in, that face to the world, the you it knows, is what I believe gets us through. I see no problem what so ever with putting on an act, as long as you have one person, the special someone who you are free to be the new you in front of until you’re happy to show the world who you now are. If you really don’t have a close enough friend to confide in, then behind closed doors, you must cry, you must scream and you must let all the pain caused out. Don’t ever let it grow into an uncontrollable monster, as that is the fast-track to depression.

Even now, change can be hard. Even though the changes are smaller and often progressive, every change has to be recognised and accepted before you can move on. If you fight change, well it becomes like one of those multiple car crashes, where car piles into car into car, but in this case, you are in every single one of those cars. It doesn’t matter how big or how small the change is, you have to deal with it and accept it before, the next car comes along. Just like that first huge change, there is generally no hurry, taking at your pace, means a better and smoother transition. I know that many will think it is something you get used to, that you don’t even really react or notice much, but you do, you notice even the tiniest. It’s your body, your life and there are no two things that are more important than those. For example, I know that discovering that your pinky finger has gone permanently numb, doesn’t sound like much, but I can tell you that by the end of the first day, you will have discovered maybe twenty actions or things that you never knew it was involved in, but it was. Every one of those things will require adaptation, thought, time and surprisingly a lot of emotions, other than just frustration. It will cause extra fatigue, exhaustion, and stress, things we really don’t need. The knock on effects can, in fact, be enough to send your health on a downward spiral, so you have to take time, give yourself the space you need to rebuild a new way of living, yet again. Nothing is ever “just change”, it will have and does have an enormous impact.

Chronic illness is never just one symptom, it is a myriad of pain, emotion, disability and mental impact. Change is going to be part of your life, like it or not and the sooner you open yourself to that fact, the easier your life will be. As I said, there is no magic bullet, but once you have successfully gone through the process that works for you once, it does get easier. The fact that our lives are unpredictable at the best, well oddly, it’s good to know one thing is a fact, even if that fact, turns out to be change.

Please read my blog from 2 years ago today – 17/04/2014 – Who do you trust?

Sometimes once I have sent out the notifications of a new post being available here, I sit and watch the globe at the top of my page and I wonder what it is that has drawn readers from all over the world to come to my page and read the ramblings of a middle-aged woman in Glasgow. I am always amazed to see the flags of countries I have never heard off, just as I am on Twitter when I can’t even make sense of the profiles, but here are people who’s first language is clearly not English, still finding something in what I say so compelling that they are happy to spend times reading and translating my word and in the case of Twitter retweeting it, often translating it for those in their friends circle. I sit there watching flags appear and disappear, different……