It’s another bank holiday weekend, which of course means I have three days ahead of me rather than the normal two of snoring from the settee, well at least he is happy. Apart from myself, who at least has an excuse, I have never known anyone who can sleep as much as Adam does. I used to think he would grow out of it as it is usually something even men grow out of in time, but well he is well in his 30’s now and still no sign of it. When we met I thought the 17 year age gap was so huge that it would never be breached but here we are 15 years on and if I am totally honest the age gap, has now closed, I no longer find myself biting my tongue all the time, scared that I might sound like a mother instead of a wife, which is honestly the only thing that ever once showed me, we came from different generations.

It’s strange how growing older doesn’t really change you as a person, that teenager that everyone once kept telling you, will feel different when you are older, is still there and at heart we don’t actually feel different, just a little wiser if anything. I am still at the core the same person I was then as I am now, I honestly don’t believe our core values ever change, things around them do, but we are at heart the person we always were and always will be. My moral values were formed before I was even aware of them and they are still there, probably felt more deeply, but otherwise unchanged. When so much else changes it is odd that those don’t, maybe that is why I have such faith in people to eventually do the right thing, despite being proved wrong a million times and more, I still have faith in people. I have lost count how many times I have tried to work out why I trust when there is no reason to, or why I accept what happens on face value without looking any further, but I guess the world needs some people like me, people who don’t judge, don’t fear and don’t question, just believe.

As strange as it might sound it is those core values that have helped me to get through a lot of what has happened to me in recent years, being able to accept and able to just get on with things is probably one of the most important coping strategies there is. I cringe every time someone says things to me like keep fighting, I fight nothing and that includes when I have taken beatings in the past, I learned early that just letting it happen, brought things to an end sooner than if I put a resistance. Try fighting a spasm and it really does make it worse, breathe through it, stay calm and possibly massage the area, just like all mothers are taught to with childbirth and it will let go and stop hurting far sooner than trying to jump about and screaming ever does. I know it is hard for those who don’t live with pain to see someone in pain, especially someone who they love, but from my side, I honestly think they too are on the worst end of it. I at least know what is happening, I know how it feels and I know what to do, or not do about it. I totally trust my body to not do something I can’t deal with, mad as that sounds, it is how I feel about it. My core values of trust, accept and believe can get anyone through even the most unexpected and traumatic events, truth, honesty, and righteousness, don’t help at all, other than when it comes to dealing with those around you.

I can’t help but try to protect Adam and Teressa from much of it, not because I don’t think they can deal with it or that they will react in a way that won’t help, but because I have always and probably always will try to protect them from the worst of it. I don’t lie about it, because I can’t, but I avoid talking about it unless there is no other choice. That also is part of me, I protect people, I always have and I don’t know how to do things any other way. I can’t and I won’t add stress to their lives that they don’t need especially when there is nothing either of them can do about it. Sitting telling them about the pain I am in that day, won’t make the pain go away, all it does is cause them pain and that is pointless. I don’t gain anything other than stress for myself when something happens that I can’t hide and I see Adams reaction to it, even if it is one of him actually helping me or at the least trying to. I am always left feeling worse than if it had happened without him knowing, I know that part of that might be some sort of stupid pride, but more than anything it is a feeling of letting myself and him down because I have failed to live up to my own core values.

I have seen the toll that my health has taken on Adam over the years and no matter how much I try to hide or cover up things, I still see him worrying every day about just going to work and leaving me alone for a few hours. As I keep telling him there is no need to worry, what will happen will happen whether he is here or not. Take yesterday, if I had fallen when he was here, yes he would have been there to get me back on my feet without all the problems that I had, but then I wouldn’t have learned what I did and I wouldn’t now know that I have reached a stage where I have to seriously start thinking about how I deal with that situation in the future. I also know that I managed and that if it happens again in the next few weeks, what will work and what won’t and how not to smash my face into the floor by trying to crawl normally, stay low and go with the commando crawl, regardless how difficult that is dressed in pyjamas and dressing gown. I have seen Adam go from a carefree 20-year-old to someone who now fears that at any minute something terrible might happen to his wife and there is nothing he can do about it. I see that fear and that pain all too often, so yes I do cover up, I do try to protect him and I do everything I can to not give him reason to worry. Most of the time I think I manage that not too badly but I can never change his core values of being someone who deeply cares and feels it is his place to constantly protect those he loves.

Chronic illness regardless of how many people you have around you is a solo journey. It took me a long time to realise that and get anywhere close to understanding it, regardless what your diagnosis is, it is you and you alone that has to live with and deal with the outcome. Yes, you need more than ever those that you love and who love you, but not one of them can change the fact that it is you and you alone living locked inside it. It doesn’t matter how much others know about how you feel, what is happening to you and what your current issues are, they can’t live them for you or protect you from them or even stop them happening, that is your job and yours alone. I guess that thanks to my writing Adam know more about me than most other husbands might about their wives, but no matter how much he knows, or any of you out there know, only I ever feel and have to live with the reality.

Please read my blog from 2 years ago today – 03/05/12 – Rehab returns

Rehab called round yesterday and as with all their visits, I didn’t remember to ask all I should and tell them all I should, maybe I should just give them the links to my blogs and say, read you’ll get a fuller picture. No matter how hard you try to, it’s always hard to make the conversations go the way you want them too. I’m sure we all do this, run through in advance what you are going to say and how you are going to stress things, even on some points what we expect their answers to be, just to find that on the day none of it happens anything like that. I have never understood fully how medical people manage that one, as I always used to prepare for business meeting be it, directors or staff, I usually got it pretty close to reality, put me in front of a Doctor or a Nurse and they continually curve ball me. I suspect it has to do with what they think is important, is usually…..