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WHAT ON EARTH IS GOING ON?

Thoughts and Feelings Invoked by my Pain

What the hell am I doing here, sitting at my computer at 12.38 in the morning? I'm in pain, feeling miserable and should be tucked up in bed and fast asleep.

Why is it that when my pain is at its worst, I can't sleep? I can't seem to get a grasp of normality, and end up spending my nights awake and my days asleep. It's so crazy, it almost makes me want to laugh.

My world is completely upside down at the moment. I've lost track of who I am, what I want and where I'm going. Every now and again, I find my feet and feel sure of my future…to the point where I practically persuade everyone else that I'm OK. Hey, I can cope - I've done this before? Right? Wrong.

I think that I end up kidding myself as much as everyone else. I get myself into this false sense of security, where I think that I'm able to cope with the levels of pain, stress and grief that I have to deal with on a day to day basis. But then it all just falls apart. I end up having one bad week, which then turns into two and three and four - and it seems to snowball from there. I can't seem to keep track of where I'm heading - or how I'm feeling. I get confused about what I want to do, who I want to see, and where I'm going with all of this. Not only does this end up frustrating me, but it also ends up frustrating my husband.

In a way it's really scary. I sort of feel as though I'm losing control of my life all over again, and worry that I'll end up as depressed and desperate as I've been in the past. At least this time around, I have a good support network and know roughly what I'm meant to be doing. I know that the endometriosis, for now, is in remission - and know that the only way forward for me at this moment in time, is to learn how to manage my pain.

I also know that I'm not helping myself by shutting myself away. I don't eat because I feel sick, or am in pain. I don't exercise, because of the pain - and I know that if I continue along this path, I'll only make myself worse. I know that I should start to take better care of myself, but it's finding the motivation that's the hard part. I know that when I'm like this, nothing or no one can get through to me. Everything they say, or suggest, goes in one ear and out of the other. Either that, or I take affront and accuse them of not understanding where I'm coming from. The trouble is, I don't know where I'm coming from either - so it's not exactly surprising that they're confused.

I know that deep down, I'm incredibly strong. I know that I give in easily when I feel as I do now, but I also know that when push comes to shove, I do fight for what I want. I've fought all the way with this wretched disease, and sometimes I just don't have the energy to carry on fighting. Sometimes I just want to wrap myself up in cotton wool, and hide away from everyone and everything. Sometimes I just want to give up completely - and I think to myself…what's the point? What is the point of my struggling day in and day out? Why do I push myself to these limits and then make myself ill again? Why do I struggle on a day to day basis with the pain and the misery and the grief? And do you know what? When I'm really low, I don't have the answer.

I know that if I had given up, then I probably wouldn't be here. I know that there has been many a time where I did feel like giving in - but I suppose it's not in my nature. I'd much rather fight this thing all the way, than let it win. Why should I let it get the better of me, year in and year out? I know that at times like these, I find it hard to think of ways and means - but eventually I do pull myself out of it, and do get back on track.

I know that I have the love and support of my husband, who is incredibly tolerant of me - unless we've both had a bit too much to drink...!!! But he can't be tolerant all of the time, because that's just impossible. He gets frustrated as much as I do - even more so, perhaps…as he watches from afar, while I shut him out of my life. Sometimes I wonder how he manages to cope with me, especially when I'm like this… full of negative feelings and thoughts.

I've been unwell for such a long time, I can't actually remember what it feels like to be 100% healthy. I know that I've had times where a drug or surgery has worked, and where I have actually felt and looked so much better. Even now, though I'm under-weight, people still say that I look better than I have done for a long time. It's just a pity that I feel like death warmed up.

I think that so far this year, has been one of the worst years I've had to deal with. I've not yet had a moment since the beginning of the year, where I've felt well and full of life. I was shattered after Christmas, and so it took its toll. It took about two weeks to recover from that, and just as things were bouncing back, I got my period. It seems that each month comes around too quickly, and just as I'm beginning to feel relatively normal, my period comes back to haunt me. My pain and my health have deteriorated rapidly these past few months, to the point where I'm pretty much house-bound all of the time. I've even had to resort to going into hospital, for help - something I never thought I would do again. All those thoughts and plans I had for the year, have flown out of the window. I had an idea that I would get my life off the ground this year, but right now, I can't imagine how. Somehow I need to find that positive energy once again, and start afresh, before I completely lose the plot.

At the moment I'm either up or I'm down. There isn't any in-between. It's not overly drastic…I mean I don't have moments of manic depression followed by moments of sheer joy. I just seem to have really bad mood swings - especially when I'm on my own, wallowing in my pain. I suppose that's the worst thing, really. Being awake, in the middle of the night, knowing that your pain will keep you awake. Sometimes I don't even go to bed…because I don't see the point. And so the vicious circle begins.

What a life eh? Is this the way I really want to live out the rest of my days? Not particularly. I think that it would be so much better if I could wave a magic wand, and take this hell and pain away from me. But then, would I still be me? Have I been living this life for such a long time now, that I wouldn't know what to do, if I did have my health back? I have to admit that the thought is scary. Would I walk away from what I know completely and never look back, or would I continue with the work that I do - and try to help others in similar situations?

I know that if I continue on this track, though, I will drive myself up the wall. I know that I have to do something other than surround myself with endometriosis related e-mails and support groups. I have to break away from it, even if it's just for a few hours a week.

I have set myself some goals - and have managed to achieve a couple of them. We've signed up for evening classes in Greek, which will be fun. I'm also going to do some voluntary work in October, which fills me with fear, as well as a sense of achievement. So at least something is happening in my life, other than this pain. Of course I'm able to get out and about - and as much as I can, I maintain my social life. But it's nights like these that really get to me. They're just too much. Being awake night after night, coping with the pain on my own.

I know that life isn't all doom and gloom. I know that I'm better off than other people out there in the street. I know all of that, but it still doesn't help me when it comes to how I feel right now. I don't need lessons in how to think about other people. I don't need lectures either. I have enough understanding and support, so why can't I pull myself out of this? Where am I going wrong?

I know that sooner or later, I'll have pulled myself out of this foggy mess, and know that I'll aim to get back on track. I will try to organise my life once more, and just hope that my health improves to the point where I can function once again. All I'm after is that sense of normality, that sense of achievement...that sense of belief in myself once again. Is any of that too much to ask for? I do wonder sometimes.

I know that I have too much to live for - and that I will eventually learn how to control my pain. I also know that there will come a time where I can live with my pain on a day to day basis. I'll learn how to live within my limits, rather than push myself. I'll learn how to cope with stressful situations, and how to cope when I don't want to.

I also know that at this particular moment in time, all of that seems impossibly far away - which is stupid really…because I've done it before and I can do it again. I'm a fighter, after all…aren't I?