Generally at some time you may reach a point where your illness/es have become old news. Very old news. But sadly, they are still very real to you. Like the endless wars that rage on in parts of the world. There is no end and there is seemingly no solution. It is all just too awful to watch so we look away. We have to because it can become intolerable. The emotions. The pain. This is the reality of what Chronic Illness is like. Well it is for me anyway.

Your friends, whilst originally they were deeply concerned and connected, have now reached that point where it’s just too sad and unrelenting for them. What is there left to say?

For those who may have secretly thought you were faking it or attention seeking , even THEY must surely realise that if that were the case the simple fact that decades have rolled by and nobody is really paying attention anymore, well it would all seem a little pointless; even to those sad individuals.

Your doctors have probably seen you for years now, and you have either not improved or you have gotten worse; despite whatever drug they have given you or trialed you on. You may be considered complex and non responsive. Two words that make the average M.D. run for cover!

Even though I am sure that they all covered some rudimentary lessons on chronic care in Medical School, it is far different when you are face to face with it, and have exhausted all the known medications and complimentary care options. Doctors will start to treat you in a blank and disassociated manner and usher you out the door as soon as possible.

Because you have the misfortune of having an incurable illness and nobody knows what to do with you.

Your partner / spouse has watched you linger and struggle for years now, and so to them your pain and circumstances have become ‘situation normal’. And even the most loving and caring partner/spouse can now sleep peacefully while you are in agony. They may have even moved to another bedroom so you wont disturb them. Maybe you even want them to out of guilt and frustration.

Your social life can become non existent or episodic, where you may go out of the house out of sheer novelty or for yet another doctors appointment.

Time also takes on a different meaning.

Years can float by or linger painfully. Days can blur, until, what day it is no longer has any relevance or meaning. The passing of time is marked by the pain you are in and what symptoms you are currently experiencing. And by how long they will last. Perhaps you can even remember the year by how often you spent in hospital or in terrible pain. 2008 will always be the year I first lost my vision.

The only problem is…

That although the rest of the world may have become extremely bored and completely over your illness/es …but you have NOT gotten over them yourself. To you, the pain of them and the all the frustration is still very, very real. So you stop talking about it. You stop mentioning it. You even stop talking about it to your fellow sufferers because nothing has changed and somethings even worsen. But they haven’t stopped and they don’t.

I have gone from someone who always had something to say and something to do… to someone who struggles for something to say and struggles with everything I do!

My older relatives and friends lead much more exciting and eventful lives than I could possibly hope for. My 90 year old neighbor makes me envious as I see her walk past my house on the way to her hair appointment or social event… I am also completely in awe of her. She is the reason I still try and put on something nice to wear or struggle to the car to be driven to the cafe whilst my husband gets us a cup of coffee in a take away cup.

My pharmacist has known me for many years and yet we have never met. He, and many others, ask about me via my husband and he always replies “…she is managing… and she says hello!…

I guess I am managing. I guess I am coping; all things considered. But its not easy and some days the definition of coping means that I am not in hospital or not in deep depression.

I know that some people see my life as being similar to some sort of early retirement. With all the fun and freedoms that come with not working. I can say without fear or hesitation IT ISN’T!

If given the choice right now I would happily work until I died, as long as it meant I didn’t have one more moment of these endless and painful diseases.

It is 4 A.M. on Sunday as I write this, but it might as well be midday on my birthday; it doesn’t matter anymore. It is just time. And time is something that these diseases take and consume. Thanklessly, endlessly and without remorse.

I am painfully aware that every day is a day I will not get back! That is why I try with all I can to do something, anything, that will give this time meaning. Like writing these blogs.

I am painfully aware that I have nothing interesting going on in my life and that I struggle to have conversations with people. I am aware that the most entertaining thing may be something that my darling pets or my beloved garden are doing. It has not escaped my attention that my phone no longer rings and that, to the rest of the world, I am boring and a difficult concept to imagine… but the thing is… I am a person. I am me. I am someone who never wanted this and never chose this. I am the one that people write little memes about like “suck it up… and get on with it” or “Don’t let it get the better of you”. Meaningless platitudes uttered by people who have NO idea what it really means.

Which is why I struggle to relate and talk to people these days.

Nobody wants to hear about how I really am. Nobody wants to hear the painful minutia of what my reality is like… EVEN ME!

So this is the stage I have gotten to. And this is the stage I linger at. And I become grateful for the days when the pain was only moderately intolerable or when I can do something for myself. Most conversations that I have now are in my mind and in within my separate reality. Internally I have conversations and develop coping strategies to get me through yet another day. Or I relive the times when life was much different. I try to focus on ONE thing that I may be able to achieve in that day (a shower or time in the garden) and I do everything in my power to achieve that goal! Even if there is a price to pay for it… and there always is.

Most people reading this will either identify with it or find it deeply depressing… and that’s why I don’t talk about my reality anymore. Because I don’t want to burden people who are already struggling themselves OR I don’t want healthy people to deem my life depressing or boring… because…as they say… that is the hand that is dealt me and the one that I must deal with. But it’s not easy.

I may be the most boring person but I completely amaze myself on how I have managed to get this far!

Gentle hugs,

Trish