Sometime after my surgical treatment for endometriosis I could literally feel like some around me were were thinking:
Right that’s it now. That’s you sorted. Back to normal right?
Unsettled, I went back to the doctor for what seemed like the hundredth time that year and got their opinion, and got the same sort of feedback.
It felt like I’d gotten a bit of a brush off from my health professionals, despite asking for more help and asking what more I could do.
That’s fine for some I suppose, my quality of life was better, but I didn’t really feel like I’d improved enough to stand alone with chronic pain for the rest of my life. Not just yet anyway.
Little did I know at the time, but being forced to figure how how to live with chronic pain on my own would be the making of me.
How to explain my pain management strategy
I just about manage with pain now – five years in I’d say I’ve settled into managing to a point that I am satisfied only very recently for the last year. I struggled with how to explain to all of you about the various ways I manage to live with chronic pain for many, many weeks. All the little coping mechanisms and work arounds that I’ve tried, failed at and repeated until it was a honed instinct.
All I knew it was that my once effortless life has become now a series of non-negotiable tasks I perform to live as close to a good quality of life as I can muster. It all looked more and more complicated the more I sat down and tried to step back and explain a process that I’d already worked so closely into my daily life.
Then I found the Pain Toolkit – a brilliant website with 12 steps that not only expertly explained the coping mechanisms that I’d slowly concluded over the years I’ve lived with endometriosis, but does so in a way that anyone can understand and follow relatively easily.
It’s a terrific website, and I highly encourage you to sit down and read through all the advice it offers. Part of me a little miffed that I discovered it about two years after I figured out everything that it recommends for myself, but more of me is pleased to have a wonderful, plain English resource for explaining how to live with pain.
There are no perfect methods for managing with pain, and unlike breaking a bone, or catching a virus, there’s no slow recovery and release, only a burden to carry each day. So, I’ve taken the 12 headings from the Pain Toolkit to explain how I do each of them each day with the specific examples where possible that help me.
1. Accept that you have persistent pain & move on
This is the hardest, and longest lesson in living with a chronic illness. It’s really easy to sink into the misery of being ill all the time and to let the despair of “why me?” rule your mind when it comes to the idea of being ill long term.
I spent about two years thinking like this until I decided enough was enough and that illness was now part of my life and something I had to take ownership of.
The day that I was able to start managing with endometriosis better was the day I stopped thinking about why I had become ill or dreaming about what I’d do if I was cured, and started putting my focus into accepting and working with my illness. Coming to terms with your illness has to come in your own time and it doesn’t mean that your illness is wanted or something that you want to keep, but it’s a very important step in empowering yourself to manage your pain day to day.
This was proved by the day I started this website, I was now firmly in the acceptance part of living with chronic illness, and the empowerment I get from writing factually about my experiences and ways to cope helps to keep me going.
2. Get Involved – Building a support team
My family, partner, friends and work colleagues are a big part of the reason I am able to live and work with endometriosis. This meant many often long (and repeated) conversations about:
- What chronic illness means and how I will not get better
- What endometriosis is and what it feels like
- How there is no miracle cure
- How much hard work my illness is to live with
- Any help I might need day-to-day
When you’re diagnosed with a chronic illness, some of the people around you will fall away, but the really superb people will rise up the challenge, stand up and support you. Surround yourself with good friends and loved ones who will never tire of fighting your corner or covering your back. These are the people that will “get your illness” and nurture you as best they can to help you manage with the burden of illness each and every day.
3. Pacing. Learn to pace yourself
We’ve always been told historically that as long as we push on and work hard then we can accomplish anything we want to achieve. Strangely the opposite is often true with chronic pain. Living and working with chronic illness means tackling activity in such a way that you’re never overdoing things or over-stretching.
The consequence of doing too much are days and days of payback of pain and fatigue. It’s really important to push back against people that ask too much of you and learn to say no once in a while.
For example experience of living with endometriosis tells me that I have a certain amount of energy for my day, and within that limitation of energy I also have a threshold of pain that once passed means I will feel worse pain that will linger for longer. We are the ones who will suffer if we overdo things, not anyone else. So don’t feel any pressure to be a martyr for pain on anyone else’s behalf!
If I went ahead and lived as I used to before I got sick I would be ill a greater proportion of the time, by trying to even out activity in a straight line (avoiding the times where I do too much or too little) I carve out a much better quality of life day to day.
4. Learn to prioritise and plan out your days
This is very much tied to the point 3, but a big part of how I manage each day is by planning out what each day of my week to strike a balance between:
- What I want to do
- What I can realistically do with the energy and pain for that day
Doing so has led to me being called organised, but truthfully the flippancy that comes with improvising through life is a luxury that I can no longer afford with an illness that constantly keeps me on my toes. Consistency and normality in my quality of life are worth far more to me now.
I use my phone to write down everything I’d like to accomplish in a day, and I prioritise each of these points by giving them a time that would be great to do these by. Some of these things are reminders to do things that I’d normally forget, some of them involve work or exercise, like cycling or going to the shops.
Crucially if I reach a point in the day where I cannot do something anymore, I push it back to another day. If it’s something that I know is too much for me, I forward it on to my partner so he can help me.
Having a plan for my day and my week makes me feel far more dependable than the days before I used to do this. My family and friends know about my day plans and know that if I’ve written it down then I will get things done, and that helps set expectations on the days where you can manage less. People are far more understanding, realising that you will get around to a promised task and it won’t be forgotten.
Having a schedule and diary for your activities allows you to better prepare for big energy events like parties, seeing friends or days out because you’re able to mentally prepare for them a couple of days ahead of time and set aside energy.
5. Setting Goals and Action Plans
I use daily goals as an incentive to not only motivate me, but keep me going. Every day at work I try to think of something that evening that I am looking forward to. They tend to be simple ideas, but sometimes the personal and most simple ideas are the strongest motivators. It might be watching a new movie with my partner or looking forward to a lovely home-cooked meal, or something new that I’ve bought myself that I know is waiting at home.
It’s really important to have bigger mental goals too. Even if you don’t write them down anywhere, reaching your goals will open up more doors for you. For example here are a few of my past ones:
- Learn a new hobby
- Start an endometriosis website
- Figure out how to cycle to work
Self motivation needs some discipline and that’s why giving yourself incentives is really key. Life shouldn’t be all hard work. Through completing my goals above I am now more realistically able to manage other things. I’ve met new people and opened new doors. Your goals need to be realistic and manageable. Start with small, achievable ones and work up slowly to what you’re dying to do.
Through gaining more energy from my past goals, it’s increased my confidence about other things. I’ve needed a holiday for the longest while, and for the first time in about five years I think I am strong enough to manage it.
6. Being patient with yourself
This is very much tied in the first point about acceptance, and there will be many points in self-management of endometriosis where you’ll get frustrated about little you can manage (despite improving). This is where you need to remember to cut yourself some slack and be more forgiving.
Others around you will see you starting to manage with pain and think that you’re doing okay or that you’re getting better. This can be very isolating too. It’s really important to provide clarity to yourself and others by reminding yourself that you are a chronically ill person and how set backs are normal and will happen. This doesn’t mean you’re failing. Being ill all the time is a immensely hard, and there are times where you’ll have had enough. These feelings almost always pass, and allow you to carry on.
Remember that you have to work twice as hard as everyone else and feel proud about how much you are managing, however small it seems at the time.
See also: A chronic illness is very hard work
7. Learn relaxation skills & keep relaxed
Stress definitely has a big impact on my pain, if I can keep stress and anger at a manageable level then those are the days I will definitely manage better. Illness can on occasion make you very angry (not unreasonably), and that’s why it’s really important to fill as much of your time as you can with things that you love and find calming or soothing.
These things are different for everyone, but I personally love finding time for knitting, cycling, seeing friends and playing video games. All of these things are treats that set my mind at ease so I can relax and looking forward to these things helps keep endometriosis more manageable.
See also: You can be ill and be happy
8. Keeping fit. Stretching & Exercise
Just to go to show you that I am still learning too, this incredibly important point only dawned on me in the last year when I realised that I could indeed start cycling again to give me greater mobility, independence and fitness.
It seems really obvious now, but exercise really does help with the pain, as a sedate body that is less exercised tends to experience more pain.
I now cycle to work every day to help keep my pain more manageable, and as a result have been able to wean myself off painkillers, but exercise can start as something small and simple. I started out with trying to walk 10 minutes every day, or standing and doing some gentle stretches while watching a TV programme.
The thought of exercise seems impossibly hard when the pain is at its worst, but I encourage you to ask your health professional for recommendations of activities that are doable at your stage of treatment.
The benefits of exercise often leads to more energy, natural pain relief and better quality sleep.
9. Keep a diary and track your progress
It’s entirely possible that my late twenties might be a tad old to have a secret diary, but I actually highly recommend it. Mine is a short online account of my pain – it’s basically where I complain about living with endometriosis so other places where I write about it (like here) can benefit from the pragmatic and optimistic elements.
In reality though I use my pain diary to write about how much pain I am in, what it feels like, the scale of my pain, and the multitude of symptoms I experience day-to-day. Over time it has developed into my health blog – a record of the conclusions of all my appointments, a detailed account of my surgeries. It helps chart my progress over time too. For example I’ve gone from taking an average of 25 sick days a year to to a humble four. Sometimes looking back at the very worst times helps to confirm just how far I have come.
I write this diary for me, and it helps focus my thoughts. Do start one if you haven’t already.
10. Have a set-back plan to fall back on
I fall off the horse occasionally, not taking my own advice occasionally, or sometimes knowing I shouldn’t overdo things, but do them anyway because that’s a normal reaction from time-to-time.
This is all fine, as long as you have a backup plan, somethings that you don’t draw on too often, but sometimes knowing you have a series of safety nets is a big comfort.
I have a series of backup plans – which spread from day-to-day ones, all the way up to emergencies, or if my illness gets worse.
Day to day plans are dead simple. I carry emergency food to keep my energy up. I have emergency cash on me for the sole purpose of if I need to get a taxi home or buy more painkillers.
Cycling to work I’ve arranged for a couple of people to come help me should I get stuck, or not be able to cycle home.
At work I have a chronic illness draw in my desk, and it’s purpose it to provide all the comfort it can when my days are at it’s worst. My favourite things to eat, various painkillers, heat pads and creams should I need some comfort.
See also: How I work with endometriosis
11. Team Work. Get involved with others
It’s really important to involve those around you with your treatment, to talk openly about what you’re going through and equip the people around you to be able to step in and help rather than flail and fall into silence when you’re struggling.
This works at every level too – keeping good lines of contact with your doctor and consultant, about what symptoms you’re finding hardest and what you could do with the most help with.
I try to be proactive when it comes to my illness, so as well as managing it myself I also make use of local support groups, attend information days and chat endlessly on social media sites such as twitter to help keep me going day-to-day.
There’s no reason to isolate yourself simply because you’re ill, and if you’re having trouble getting those around you to understand, surround yourself with people that do – seek out others that are similarly ill and take comfort from the fact that you’re not alone.
See also: Illness makes us all equal
12. Keeping it up. Put into practise tools, 1-11
Many of you have asked me how I manage and muddle through with endometriosis, well the points above are the long and short of it. There’s no one simple method, only a multitude of coping mechanisms, routine and schedules to keep me on the “good side” of chronic illness. Over time, living in less pain will become less about luck and more about you taking control of your illness, to the point where you know what will cause you to have a set back – so you can avoid these things.
Lastly, you need to make sure that you keep the routine I’ve described up, and you need to get used to doing do until it becomes second place, and you start to do these points without even thinking about them, and yes they need to be done every single day. The days where I slack on my chronic illness treatment are the days I feel worse – just like when you forget to take your tablets.
It takes practice and patience, but this is how I manage (largely successfully) now.
Credit: The Pain Toolkit
Thank you to Pete Moore for his work on The Pain Toolkit, which I’ve based the headings for this update on. It’s an excellent resource, so go read it for more help and advice for managing with chronic pain.