If I had to estimate I’d say that I am in pain 95% of my waking hours.
Most people I know are shocked by this, but pain is my new normal. What’s unusual for me now are pain-free days. I average about four to five pain-free days a year. Not being in pain is weird. Not horrible, just weird. I’m not so much relieved about the pain being gone as worried about when it’ll come back.
It’s something I hear a lot from friends living with chronic pain, but it’s not an area of chronic pain many people talk about.
Is this what being normal feels like?
An absence of pain leaves me feeling fearful. Most people who are well have a hard time understanding why pain free days can’t be crammed full of all the things we normally have to avoid.
We survive pain by always doing less than we want to. We hold back in every action or motion. We worry about pain getting worse every day. So when it leaves us we’re more scared about the pain returning that we are thrilled that it’s gone.
Being pain free is always the goal, but we’re more pragmatic than the people around us do don’t live with pain so casually. They remain optimistic about a future where pain doesn’t exist whereas we appreciate that while it’s great that the pain has left us temporarily – it is exactly that and will return without much notice – at a time of it’s choosing.
Even if the pain doesn’t come back immediately, the payback for any pain-free days could be hours or even days later. In our temporary relief we worry for our future selves. The temptation to act like a healthy person is immense, but we know the pain will seem twice as worse once it returns.
We’re made to feel ungrateful for our ambivalence about days that are pain free, when we’re just being responsible. It’s not something that someone who is well can ever understand. A days relief is great, but it just makes the return of our pain that much more horrible.
It feels strange when the pain is quiet, because pain has become the white noise in my life, always boiling away while I carry on with things. it’s absence feels so messy and complicated in a way being pain free never used to be.
Even now there are still people in my life who believe that I’ll be well in some not to distant part of the future. They argue that I haven’t found the right solution to my problems. While well-meaning, these people can’t help by imply that old idiom of “you’re not trying hard enough”, that long term illness is something that can be pushed through, fought against or bargained with. The reality is that chronic pain isn’t straight forward, it doesn’t follow convention, it rarely follows a pattern, it defies being easily categorised or treated, and that’s why many of us spend years finding our new, refined level of comfort alongside pain.
That’s not to say that the way we cope each day is negative or wrong, we’re just being realistic. We live with this every moment of every day, not just in the brief moments of time that someone else decides to enquire about how we’re doing.
On getting better
I distinctly remember an occasion where a pain consultant said I was being too negative by thinking that there wouldn’t be a time where the pain wasn’t present in my life. Upon reflection, it was very easy for her to make statements like that while not in pain herself. Other people can look outwardly into my situation and be quite convincing about their hopeful suggestions about where things might go, but ultimately we’re the people living with these diseases, and when you feel pain all day every day, it slowly becomes as natural as being alive.
However I’ve lived with pain for around six years now, and I’ve seen the days where I am pain free gradually decrease, and I am okay with that, because I don’t have any choice. Like quicksand, it’s better to remain calm and still and develop the patience that will allow you to be carefully be lifted out.
It’s a bittersweet reminder of what your life once was – one I don’t want. It’s part euphoric and part tragic. I genuinely find myself trapped more than ever on pain free days. At least with the pain I know where I stand as I carry on quietly (yet triumphantly).
Hopefully that explains why pain free days feel a little… complicated. That’s the only way I can describe it. You should be overjoyed to have a day without problems, but you worry about overdoing things and the payback when it pain comes back – because it always comes back. It would almost be stranger if it didn’t. 🙂
I wish I could have pain free days! I am 20 and have been in pain for about a year now. I haven’t hit my 1 year diagnosis yet, but it’s coming in November. I am a college runner so the pain gets even worse around 3:30-6 everyday when I practice. Just wish it would go away. Having my second laparoscopy in December and hopefully will find some relief! Any tips of ways to cope or just a little relief? I’m willing to try anything!!!!!
Thanks so much,
This is so spot on, I feel like I could have written it! I opt out of pain meds because I prefer to be aware of and monitor my pain level from day to day. As much as I am in pain, I have realized whether I do something or not, the pain doesn’t change, it’s still there. So, mine as well enjoy myself no matter how badly I’m hurting. Those days where I want to rip someone’s throat out, I tend to keep to myself for the sake of their life haha. There are lots of things that can help alleviate the level of the pain, but it typically doesn’t go away. Every endo gal I know has different experiences with things. I have and still try different things out all the time. Had surgery in 2011 and will be scheduling my second one in the next few months. It doesn’t get easier, it just becomes your normal. There is no generalized “normal” in life. We each create and develop a “normal” that works best for our bodies and lifestyle. Sending endo hugs. Maria
I probably get 2 pain free days a month if I’m lucky and I spend the whole day waiting for it to hit. 5 years, 8 surgeries and a constant supply of morphine. Can’t see an end to this.
I find it very strange that I read this post today. I can’t say whether I am happy or sad to read it. I was writing in my own journal about this exact thing. I’m in pain most of my waking day. I have been trying to find more coping strategies so I can work and function. Currently I require opioids and anti-emetics (I get extremely nauseous with opioids) just to bring the pain down to a tolerable level. I get about 1-2 hours of relief, down to a 1-2/10 if I take two tablets, less relief if I take a lower dose. Without the pain meds I get into a pain crisis and feel like I’m losing all control over my ability to cope. I’m waiting for my appointment with a gyne specialist in endo treatment. I’ve been in constant pain since April. I have had this disease for many years. It invades my sleep and all aspects of my life now. I’m still going to work, but adjusting my day so that I do most of my work in the earlier part of the day and can take some medication in the late afternoon and rest. Because of the meds I can’t drive and find I’m losing some of my independence which causes me more anxiety. I have wonderful friends and a very supportive husband.
It’s very hard to think that this is it, that there isn’t a light at the end of the tunnel. My hope is that a hysterectomy and another round of scraping away the endo that’s inside will give me relief. That’s why your post has hit home. Some days, I’m too tired of constantly trying to cope. Those are the times that I feel dejected and need a good cry. Some time by myself, to find the good things in life. To be thankful for all that I have and try to forget about the pain. I have recently started horseback riding, the endorphins from getting excited about something are the best possible pain relief. That’s what I need to focus on. There isn’t an alternative. I try to keep my mind busy so that I’m not focusing on pain but on the good things in my life.
Thank you for putting this into words. I feel less alone in that complicated emotion now.
Thank you, I’m so glad you understand, some people have said “I’d love to have a pain free day” but it’s just not as simple as that.
I’d love to get into contact with you to tell you a little about me journey through Endo. I also would like to ask you a few questions as well! You have such a wonderful webpage!
Hi Emily, always happy to chat and answer questions. Thank you for your kind thoughts. I normally ask that questions are posted here (or on my about me page) so that that others can benefit for the answers.
Thanks, for that, you are so right, lack of pain is always complicated emotionally. 10+ years of constant pain…the past 4 no pain free days except for 3 whole weeks after my hysterectomy in April 2015 – I was like Snow White singing in the forest with all the birds, it was magical, amazing, I’d forgotten completely what no pain was like…I realised how much tension I carried all the time in my face (I could feel my face as if the skin had melted away it was surreal) my whole body and how the pain gave me no patience whatsoever – that indeed, as one of your other posts explained, it made me sharper, snappier and meaner than I ever intended or wanted to be…then it returned…I’m trying to work through that still…the cruelty of 3 whole weeks without pain…it would have been better to have remained in pain than have my body trick me like that…I am awaiting another surgery…but am less hopeful about any real relief, I feel disappointed in my surgeon who never, ever said that Endo could or would still continue to grow and spread within my pelvis even without a uterus, tubes, cervix and right ovary. The left was left as it was, they said, completely unaffected by Endo, unlike the rest of my lady bits…now the surgeon says, well maybe we should have taken the right one too (thanks, instant menopause) but I am doubtful of any relief from pain…and that is the only outcome worth pursuing as in, if I’m still going to be in pain then why add menopause to my pain? To those looking for hope, relief, results I’m sorry if this post seems a little despondent, I’m not, truly, I have a wonderful, amazing life, super husband and 3 beautiful (and now I realise, miracle) children, but pain has been and still is a constant unwanted, unasked for companion. 10mg of amyriptylene at night is taking the edge off – or perhaps it’s only my will to believe that it is working that it is. Take a deep breath on a pain free day…as the return always seems worse than consistency of pain, try not to let it get you down xxxxx