Living with pain on a daily basis is enough to drive anyone insane. The effect it has had on my life still carries its scars. When I was diagnosed with endo in 1994 I couldn’t have imagined that the pain would stay with me all the way down the line. Sometimes it feels as though my pain is no better now than it was back when it all began. Sometimes I also worry that I’m no better at coping with it now than when I was first diagnosed. I do have my coping skills and I do try to use them to my best ability. People who have known me all the way through, say that I am better now than I was back then, but sometimes it’s hard to see the wood for all of the trees.
It’s a horrible feeling knowing that the pain is here to stay, no matter what I do or try. I have tried to convince myself that I will get better and that one-day all will be well again. But as my symptoms continue to get progressively worse, so does my pain. Therefore knowing that the pain is here to stay, however hard I wish it weren’t, has meant more tantrums and tears from the depths of my emotional state.
I had hoped that life would improve somewhat after my hysterectomy in 2009 and for a while it did. But then it went horribly wrong both physically and emotionally which means that I feel as though I am back at square one and my pain is as bad as it ever was. The cause of the pain this time, though, is something that I could change if I so wished. Because endo just loves oestrogen and the more you feed it, the more it gobbles it up. So going on HRT after my hysterectomy was something that I had to weigh up considerably. What was more important to me – my pain or my mood? I went with my mood. I can live with the pain, but I couldn’t live with the feeling of complete and utter despair every time I woke up in the morning.
Learning to live with my pain is a daily task. It’s a constant roller coaster of emotional and physical symptoms. It’s also turned out to be a constant learning curve. Just when you think you’ve got the hang of things, something else comes along to stir the pot.
There are times when I do actually feel in control of the situation. I am able to manage my pain sensibly and don’t even have to rely on the homemade pharmacy by my bed. It means that I feel able to cope with anything that is thrown my way, without dissolving into floods of tears every five minutes. It also means that I’m given some much-needed time away from the pain and for a while, I feel free. But it then lulls you into a false sense of security and makes you forget what’s just around the corner, lurking there, waiting to pounce in order to bugger up your life once more. The good times away from the bad are far and few between. That means that everything spirals out of control and all of those coping skills fly out of the window along with my mood.
There are some days where I really believe that I’m doing well. I feel in control of the situation and I feel really positive about my life. But then there are other days where I feel very bleak and alone because the pain just won’t let me be. It’s there from the minute I wake up until the minute I fall asleep. And then, once I am asleep, I would much rather stay that way than wake up properly to face the pain all over again.
Sometimes the pain just seems to appear out of nowhere. There are no warning signs and no so-called ‘trigger points’. It appears like a bolt of lightning and hits me with such ferocity that it takes my breath away. More often than not, I am usually out with friends having a good time and once again, lulled into that false sense of security. It is almost as though it’s reminding me that it’s still there, still in charge of my life, but is allowing me some time off. I know it sounds ridiculous but after a while, when you live with something for so long, you do tend to personalise it.
There are times when it feels as though I have no say in any of this whatsoever. The pain is there to rule – staying put inside my belly – no matter what I do to make it go away. The pain just IS. At times like that it’s really hard for me to know what to do. Do I continue to make plans, in the hope that things will settle or do I just admit defeat and stay put? After all, my painkillers and ‘kit’ are all at home, where I feel safe. Therefore, surely it’s easier for me to stay at home? But when I think about it logically, I’m able to see that making plans isn’t such a bad thing, as long as I have a get-out clause, if I need it. Therefore if I have to cancel, then I have to cancel and so be it.
However, I’d still rather not have to cancel at the last minute or leave a party early, due to my pain. But because my pain is so unpredictable and persistent it can be incredibly difficult when it comes to planning ahead. The ‘what ifs’ and ‘wherefores’ never really go away and so if I am unwell, what am I meant to do? I know that if I push myself too hard, then I pay for it later. But I also know that if I’m really unwell and the pain is rubbish, then there is no point in me going anywhere because I’d be incredibly miserable and would just want to come home.
I also hate being restricted by my pain. I am unable to work part time, let alone full time. I’m fed up with not being able to go out when I want and I hate that I can’t look after myself nearly as well as I used to. I very rarely go shopping on my own and even walking round town for an hour or so can wear me out. If I do go out and am up all day, then I end up paying for it afterwards. One good day out will usually mean I’m recovering for the next couple of days. When I am really bad I just don’t go out as much as I’d like as I dare not leave the house in case I can’t get home again. When we lived in a village, it was even more restrictive. Now we’re back in a town, it is easier to get around, but I still find it incredibly difficult when I’m at an all time low.
I hate that I have to rely on my husband to drive me everywhere. I used to be much more independent and used to drive all of the time. But I’ve not driven for years now – partly due to my meds and partly due to my pain. I also rely on my husband far too much for other things around the house. I know that I should learn to do things for myself again, because I hate being so dependent on one person. I hate the fact that he’s now taken on the role of a carer, as supposed to being my husband. Somewhere along the line things have changed and once again, I want to get them back to where they were before.
I know that I can get through this and I know that deep down I am much stronger than I was as a 24 year old. Sometimes though, it all gets too much and I just don’t want to fight it any more. It’s draining my resources to the point of no return and I sometimes think that it would be much, much easier to shut myself away and let the pain ride over me for good.
Why continue to fight this battle, when I know that the pain won’t go away? I think it’s because I’ve fought for so long and have refused to give into it. I refuse to become a full-time victim of endo and I would much rather be a survivor. But it’s bloody hard work and sometimes I just don’t have anything to fight back with.
My mood and my pain go hand in hand and it’s a well-known fact that the pain and mood receptors are close together in the brain. But just because I’m low, it doesn’t mean that my depression is the cause of my pain. The depression is a symptom of my pain and when my mood is low, my pain threshold is low. I am unable to see the good in anything and the pain just ends up driving me insane. Some days it doesn’t seem to matter what I do, I just can’t rid myself of that never-ending mind-numbing pain. I end up climbing the walls in frustration and wonder why I bother trying to fight back.
Coming to terms with the fact that I’m never going to get better is a very bitter pill to swallow. I was always convinced that there would be a time where I would have little or no pain whatsoever. I’ve come to terms with the fact that I’m never going to have a family, but as to my pain I’m finding it that much harder to let go. Why is it that I’m one of the unlucky ones who continues to have pain, no matter what? How come there are women out there with endo and they’re able to carry on as normal? Their pain comes and goes and isn’t constant like mine. Mine is there from dawn to dusk and it never seems to let up. I just don’t know if I can face the rest of my life knowing that there’s a chance that I’ll always be in this much pain.
It’s a tough one – I’ll admit that – and recently my mood has been so incredibly low, I have seriously thought about ending it all. Life would be so much easier all round – for everyone involved. I wouldn’t have to fight this pain any more and Lee would be free to move on and live his life to the full. My family would stop getting so cross with me all of the time and to be honest, I really don’t know how much more I can take.
However, if I gave up now all of this fighting and all of my battles will have been made in vain. I have continued and managed to live with pain since I was a teenager. Ever since I had my first period I have experienced gut-wrenching, nauseating pain. Things only started to get really bad about two years after I was diagnosed with endo. Though, even then, I was still able to live a semblance of a life. I think that what I’m finding difficult at the moment is my being stuck at home in too much pain and with no obvious way out.
I do know, however, that if I don’t come to terms with my pain, then it will eventually eat me alive and life really will not be worth living. As I have said, I’ve already been down that path and I refuse to let it get to me again. I know that at some point in the future all of this will make sense where I’ll be able to take stock of my life and will learn how to live it again. As long as I have decent pain relief that gives me some quality of life, then I know that I can manage and will somehow come through all of this. It’s just that right now, at this very minute, I can’t see how. Still, stranger things have happened & who knows? Maybe this time next year I’ll be wondering what all the fuss is about? I do hope so, I really do.