Breaking bad habits. It’s my 1 year post-op anniversary. This is what I’ve learned.
This time a year ago I was lying in a hospital bed up to my ears in painkillers recovering from my second laparoscopy while all my friends were sinking beers and playing two up. I was looking forward to reaching this ANZAC weekend and my 1 year post-op anniversary fighting fit – the way I’ve felt for months. But unfortunately I’ve had a relapse and lately my health has not been great. Getting the flu coincided with an Endo flare up, both of which have stuck with me off and on for the past 4 weeks. (To me this is a real indicator of the link between Endo and the Immune System.)
15 days of antibiotics has trashed my gut and my liver. 5 weeks without training has had a major impact on my energy. My muscles feel like they’ve been stitched together with a rope of crunchy glass. My body has been knocked around and its protective layer which I’ve spent months building up has been chipped away at. But unlike the last time I had an Endo relapse, this time I have backup. I have tools in my belt to help my rebuild. Everything I’ve been taught, everything I’ve learned, read, diarised and practiced over the past 8 months is going to help me gradually get back to where I was before. But getting to that point wasn’t easy. It meant growing up, being real and breaking some bad habits.
Happy one year anniversary Me.
8 months ago, I made the decision to start making changes in my life that would give me a better chance at feeling healthy. I’ll admit that that decision did not come from some excited revelation to turn my life around – but rather out of necessity. I was not coping but it took a big wake up call and a good kick up the arse to make me realise that. This meant accepting that I have a chronic illness – something I was in serious denial of for a long time. Being so young and realising I just couldn’t live the same fast life I was living before was a bloody hard pill to swallow. It was emotional and I fought it. Hard.
On some kind of mission to outmaneuver my diagnosis, I continued to push my body to the limit. I accepted every shift from work and even applied for a second job even though I was physically crumbling from the one I already had. I partied twice as hard and three times as often. I was so fatigued from Endo that the energy I felt from alcohol and drugs (briefly) gave me a boost and better yet, numbed my pain. I craved escapism. I didn’t have an off switch. I’d smash myself at the gym till I couldn’t see straight and my legs barely carried me out. If I wasn’t aching from my eyeballs to my toes the next day, I hadn’t done enough. I’d failed. If I wasn’t capable of something I set out to do, I gave myself an emotional beating. I was competing against myself. But my body couldn’t keep up with the things I was forcing it to do.
It was around this time that I started seeing my pain psychologist or my ‘life coach’ as I call her. She was really the one who alerted me to this pattern of cyclical behaviour I’d made a habit of. She also made me understand the damage it was doing to me physically and mentally and explained why it’s so dangerous for people living with a chronic illness to push themselves to burn out. I did a stellar job of resisting change. I even pushed the envelope a little more! Huzzah! But finally, THANKFULLY I snapped out of it and started to listen to the advice she was giving me. Considering the threat of chronic pain, chronic fatigue and infertility I decided to take my health much more seriously. That’s when things really started to change.
Now I have more knowledge. I have more self-awareness. I’m content without the need for escapism. Looking over my journal I can see my pain began decreasing until it reached zero. My mood on the other hand was going up and up and up until it was hitting 10s on an ordinary Tuesday. I know my triggers and I’m learning how to combat them. I feel empowered and challenged. Above all I’m really, really happy. Not just when I’m with friends, not just on weekends but consistently happy each day when it’s just me hanging out with me.
A rare smile in hospital last year. Painkillers must’ve just kicked in.
Yeah it’s been shit being sick again. I’ve missed out on things, I’ve been in pain and my carefully crafted routine has been derailed. I’ve had a reminder of the cruel spontaneity of Endo. Although I never take my health for granted anymore, it has reminded me just how wonderful I felt before. It had felt too good to be true. Maybe it was. And at a weak moment on a stormy night, I felt those feelings of hopelessness, sadness and dread sink their claws into me. Will I be like this forever? Who will want me?
But unlike before, I refuse to be ruled by those feelings. I let them come if there’s no stopping them, I ride them out and I let them go. I know that if I let them stay then they will erode all the hard work I’ve done. They will break my spirit. And I do not want to go through life with a broken spirit.
Having a chronic illness is hard work. To keep things under control requires daily planning, strategy, dedication, mindfulness, a smorgasbord of coping mechanisms and positive psychology. And even with all of that, it can still get the better of you. Sometimes it only takes one little thing to trigger a flare up and suddenly you’re back on the couch feeling like shit. Your body has let you down again. Despite your best efforts to look after it, it’s falling to pieces. It’s just Too. Fucking. Hard.
But that’s when you have to dig deep. Have a rest, have a cry, scream into your pillow if you want. (I’d suggest a yard glass of wine and a bucket of chocolate but that’s no longer conducive to my routine. Although if you’re willing to deal with the consequences, rip in!) But after that, plan your next move. What will you do to make yourself feel better? What’s causing you pain or making you feel flat? Could it be food, drink, medication, stress, being stuck inside? What could you do differently? Go through your options. Make a plan. It’s empowering and it costs nothing.
The thing that’s made the biggest difference to was finding my Ikigai – what gets you up in the morning. I know that my happiness is largely due to the work I’m doing. Before EndoActive I was starving for something meaningful and looking in the wrong places to fill that void. Now I have a sense of purpose. Finding my Ikigai was unplanned and it happened in my lounge room while I was clutching a hot water bottle. So don’t think for a second that being stuck at home in pain means you can’t be doing something meaningful and fulfilling.
You CAN still win at life in your PJs!
Syl x
May 30, 2015 @ 9:20 pm
Kia ora from Nz Syl, just wanted to say thank you for sharing your highs & lows. I too am an endo sufferer & have just celebrated my 1 yr anniversary from 3rd laparoscopy (took them a few goes to diagnosis) & while I’ve been doing heaps better with little to no pain I’m now having a flare up along with the flu. So when I googled flu & endo flare up I was stoked to find your post. It’s the fears that creep in of “oh no please not again” that take sooo much strength to fight. One thing of many I’ve learnt on my endo journey is how the mental dialogue of fear & anxiety amplifies pain. I have a strong Buddhist practice which helps me a lot but I think I need to connect with my support crew again; pelvic pain physio, pain psychologist & accupunture. I’ve had a lot of success with a herbalist in managing periods & period pain is heaps less it’s pain the rest of the month I struggle with. Is it adhesions, Ibs, more endo or an alien life form growing in my guts? Is this the best place for me to ask questions or do you have another forum? Thanks , Kia kaha (stay strong).
May 31, 2015 @ 3:29 am
Hey Lara, wow that’s great that you found my blog post by doing an organic search like that. That’s exactly why I made it actually (you can read more about that on my About Syl page).
Isn’t that interesting that we both had Endo flare ups at the same time as getting the flu! I find that with my immune system either as a result of having Endo or the other way around (having Endo as a result of a shoddy immune system) I always get sicker than most. For example if I get a cold or the flu, I’ll have it for 3 weeks rather than 3 days. So eventually once I recovered from the flu, my Endo pain subsided and hasn’t bothered me again since. It was like a simultaneous flare up.
Similarly to you, I’ve found that acupuncture and particularly pain psychology has been enormously helpful. I haven’t tried pelvic floor physio properly yet or herbs but I focus a lot on what I eat/lifestyle/supplements and find that has really helped me get things mostly under control.
You can ask me whatever you like on here although I can only give you my experience. My mum and I recently started up a Charity called EndoActive so come over to our facebook page if you’d like! I’ve struggled with the same things you have and still have many of the questions you have too. It is really hard to find answers. I know how frustrating that can be. For example I’ve had pain in my ribs both front and back on my right side for years and nobody can give me an exact answer of what it is or what’s causing it. NOBODY! So I do acupuncture and stretching and anti-inflammatories and osteo sometimes to reduce the pain. Anyway my point is you’ll find answers for some things online, through support groups, from doctors, specialists, acupuncturists, naturopaths, gynaecologists, endocrinologists – wherever you can! And other things maybe you won’t. But don’t give up and keep pushing for answers. Research is a great thing to do so you’re an expert on yourself. Syl x