So what if I’m nuts

If I didn’t know better, I would now be dialling 999 and praying that they arrived promptly. The right side of my face has just gone numb and feels as though it is hanging there, just as they show when describing a stroke. I know it’s not because it happens all the time. I used to run to the mirror and check, so convincing is the sensation that even if I was in bed, I would get up. Nerves can be very convincing when they decided to put on a show and trust me when I say, feeling as though half your face dead and falling off, is pretty horrific. It’s just one of an array of sensations that I have learned to live with, this one though is somehow the worst one. I suppose there is nothing in this world that is more our identity than our faces are, so this attack, as that is what it is, this attack, is a direct attack on me.

It can be very hard thing to accept that everything that is happening to you is actually being caused by you. Autoimmune conditions have to be the most difficult things to fully accept. Illness until you are diagnosed with an autoimmune condition is caused by some evil little bug or virus. Something that you can blame, give a face to and even a name. It’s not you, it’s this thing that is attacking you. Then suddenly this new word appears in your life, “Autoimmune”. Your body is attacking itself and it can’t be stopped. It doesn’t make any sense, how can your own body be putting itself through all this pain and be slowly destroying itself. You can’t give it a face, as it’s your face. You can’t give it a name, as it’s your name. Even logic says that you can’t hate it, as you are then hating yourself. “You have an autoimmune condition called Fibromyalgia”. That was the first time I heard either of those things applied to me. It’s one of those devastating second in life when the world stops and you sit there with everything echoing in your head. No matter how hard you try to listen to the doctor, all you really remember are those few words, the rest seems somewhat unimportant. The doctor could have diagnosed my MS at the same time, but she didn’t think that a CAT or MRI was needed. Fortunately, an ENT specialist that I saw a few months later thought it was important. It was another year later I found myself being told I had PRMS. It actually didn’t hit me as hard when the words were said, by that point I was ready for it, not the Progressive Relapsing bit, I was expecting the normal RR. It sounds stupid now, but it wasn’t until a few years later that I truly began to understand what my future held for me. It was also about that time that I fully accepted that my body could really be causing all of it.

I related all of that for a reason. Acceptance of your health isn’t a smooth straight forward thing. Being diagnosed is the easy bit, accepting and understanding can take years. I think we go into self-preservation mode. Somehow if we accept it, all of the horrid things that we have read will actually be real. It is something that isn’t just some horrid mistake and one that is going to be spotted during one of their annual catch up. Acceptance is slow, incredibly painful and totally essential. It happens in phases, the first phase is actually a false one, it’s not acceptance at all. I spent a few days at home feeling sorry for myself, just sitting there crying and crying until I couldn’t any more. I thought that I understood what was happening, that I was accepting, but I wasn’t, I was mourning. I was mourning a list of things, including the end of my fight to find out what was wrong. That phase of my life was over and gone, the fact that had gone from just one devastatingly crippling condition that was going to steal my body and my mind, to two and this one was going to take over my life. I thought the last tear was acceptance, but it wasn’t, it was coming to terms with it, realising I had to get on with life and putting the tears behind me. Over the next months, there were more tears, more grieving for what I had lost although none of us really know that, as we can’t know what life would have been, but we mourn it.

Acceptance is an incredibly slow process. It comes when your not looking for it. It grows through all the things that you discover haven’t been stolen from you overnight. It’s in all the new things you still learn and achieve despite this autoimmune monster. It isn’t a flash of lightning, it’s a gentle growing feeling and as it grows as you learn that life goes on, you adjust to your new title. I know the outside world thought I had accepted it long before I had, but that was because I was being me. Bravado was always part of my life. I always went into things full heartedly on the surface, but shaking and terrified inside. My appearance in this situation was no different. I was upfront, happy to tell anyone anything they wanted to know. I hid nothing from anyone and smiled as I spoke, even on days when I was dying inside. I can’t tell you the exact day that the two actually were the same thing. I don’t remember when I truthfully felt what I was saying, that the ‘I can do this with my eyes shut’, met head to head, with ‘I am happy, this is my life and I’m living it’. But they did.

I know many believe wrongly, that acceptance has to happen quickly and it’s the only way to get on with your life. There is no right or wrong time that acceptance will appear, but it does appear and it can’t be forced. Once you do accept, once you truly say this is what life has laid out for me and I am content to live with it, life changes. You can’t fight chronic illness. You can’t defeat it by being positive. Neither work as both are just showcases for the outside world, not healing on the inside. No one is given a diagnosis of something that is going to destroy them one day and next be smiling about it unless they have a screw loose. For me I know it was sometime around the point that I was given chemo to knock out my immune system so my body could heal, that I truly found my acceptance. That was about 4 years after my diagnosis. I found an odd positivity about what was happening to me, I might be dying slowly, but I wasn’t dying yet, I had too much still to do. If I had to do it full of radioactive chemicals and from a wheelchair, so what. It was like those chemicals were my wake up call. They don’t give you stuff like that unless you really need it and if they were going to give me a chance at living longer, I wasn’t going to let them down. My acceptance was complete.

I believe totally that we all find that point, somewhere along the path of illness is that wake-up marker and it doesn’t just happen once. They are there all the way through, there to remind us that life is still ours and we are still have living to do. It doesn’t matter how black and bleak your prognosis, once you have that acceptance, well nothing can hold you down for long. I am doing this to myself, not willingly, but because I was unlucky to have a screwed up autoimmune system. Not fair, but a fact. Even now when I know I am slipping once more, I can accept it. Right now, it’s not with an fully open heart, but with one open enough, because I have the knowledge that I will find it anew as I always have in the last few years. Once found, you never truly loose it, it just hides every now and then. Until it happens, you can’t see it, you can’t believe that it will ever happen to you. I felt the same, I thought people who were positive about their lives when they so clearly were a mess, well they were nuts. I am now and have been for several years, happy to be officially nuts.

Please read my blog from 2 years ago – 29/07/2013 – The start of a thought…..

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