Dealing with high pain days
I’ve been struggling with the side effects of methotrexate for the last nine weeks.
Nausea hasn’t been much of a problem, thankfully. Drinking a lot of water helps a lot.
But, the Headaches are hell.
They easily trump my monthly migraines and regular sinus headaches. I can forget about moving when they all occur together.
I get one day of doubled vision and dizziness - on this day, I can’t do much. My head doesn’t hurt on this day, but it’s not overly safe for me to be out and about, or doing too much about the house - I’m a big klutz.
Following that, the headache arrives, usually before I’ve woken up. It sticks around for days before fading, until the next week.
I’m hoping the side effects will decrease over time as my body gets used to the medication.
But in the meantime, I try to make my high-pain days as enjoyable as possible.
Many of these tips are logical, easy to say and hard to do. But even a baby step towards the full ‘doing’ is great progress.
Minimize stress
Avoiding stress is one of the most important things for headaches of all types.
There are a bunch of ways you can reduce stress immediately - take a hot bath, read a good book before bed, drink a cup of tea, eat a piece of dark chocolate, meditate, go for a short walk, stretch, listen to your favorite music, cuddle someone or your cat, sit in your garden. Anything that makes you smile.
If you are as forgetful as me, write a list of 30-50 small things that make you smile and relax. Post that list somewhere visible, like in the bathroom. You’ll see it when you feel overwhelmed and it’ll remind you to take a few minutes to relax and smile.
My list of activities were small and simple ones I could enjoy, whether I was in pain or not.
For longer term stress management, the most oft given advice is to give up or minimize commitments and relationships that don’t bring you joy. I’ve only taken baby steps in this area, but even with such occasional and small changes, I’ve seen good results.
Live in the now
For years, I’ve been working on not dwelling on the past. Many of us with chronic illnesses long for the times when we could do more, when we had less pain.
Although it makes logical sense to say “you can’t change it, so don’t wallow in it”, actually not focusing on the past is a lot harder.
I’d replay conversations, classes I’d taught, exams I’d sat, beating myself up for how badly I’d performed. This isn’t healthy, and doesn’t change anything. I started working to reduce this bad habit 20 years ago, and I’ve made reasonably good progress.
For me, it’s harder to ‘let go’ of the things I’ve ‘lost’ to illness and cPTSD. But I’m working on it, every day.
Worrying about the future is similar. I used to catastrophize, a lot. I’d look into the future and play through conversations, situations and events to terrible endings. But they never happened.
Future plans I’d worked on in great detail, to account for all kinds of outcomes, almost never happened either - wasting a lot of time and energy, and piling on stress.
Using my list of quick relaxing things to do helps pull myself back to the present.
Listen to your body
I’m an over-deliverer, and I bet you are one too.
Like so many who have chronic illnesses, we push ourselves past our bodies’ boundaries to make others happy or meet work commitments. We pile stress on ourselves constantly and ignore the cries of our bodies - worsening symptoms, pain and exhaustion.
Fighting to do more than is needed is the worst thing you can do on a high pain day - it will make the pain both worse and stick around longer.
Slow down, relax, smile, and give yourself a chance to heal and recover.
Rest
Don’t fight your need to rest. And don’t beat yourself up about it too.
This is the hardest area for many - we compare our need for rest to healthy, normal people. And we always come up short.
If you feel better after a nap, take one the next chance you get.
After a taxing procedure, test or operation, don’t push yourself to be active too soon.
I heard time and time again, in person from healthy people - you’ll be 100% after a laparoscopy in a few days, healed after a hysterectomy in month. But these are the exceptions. Most people take longer, but perhaps hide that they are struggling.
It took me 3 months to recover from my last laparoscopy in 2008, and over a year for the hysterectomy in 2015 - I have other illnesses that are badly affected by such procedures. When I gave in to pressure to get ‘out and about’ when I really needed to rest, it knocked me flat for a week or more.
These days, I listen to my need to rest. Well, I listen a little more than I used to.
I go to bed earlier, so I can get in my 10+ hours of sleep, instead of staying up past midnight. I say no to or cut short some commitments on high pain days. I regularly become a couch potato, surrounded by heat packs and my cats, and allow myself to nap. It makes the headaches much more manageable.
Drink and eat well
Listen to your body and find out what it reacts well to.
Drinking 2+ litres of water helps prevent the nausea side effect, and decreases the number of migraine headaches I have. Water is good - drink more of it!
A cup of coffee can take my headache down a notch or two at times, especially if it’s a tension headache. Valerian and chamomile also help a bit.
Heavily oily foods, lots of sugar, prepared meals or meals using highly processed packaged ingredients seem to make my headaches worse. These days I cook from scratch, limiting oils and sauces. Of course, I don’t cook every day - I make larger batches and freeze portions for high-pain days.
Get support and comfort
Hiding how you feel and pushing yourself to perform is a recipe for even worse future health.
It’s also a recipe for relationship destruction, as you’ll distance yourself to hide your pain. Been there, done that. Hard not to keep doing though.
Tell someone who understands you how you currently feel, ask for help, or just vent. Ask someone to do some cleaning, cook a meal, keep you company, give you a hug or massage your neck (or feet).
Online communities are good when you don’t have anyone locally who can empathize. Alternatively, reading blogs or forum posts by people who have the same illnesses, symptoms or troubles as you is surprisingly comforting.
Most importantly - don't beat yourself up
It’s not your fault that you are ill, that you get terrible headaches, that you have side effects to the medications.
You are not to blame.
Beating yourself up because you feel ill will make you feel so much worse.
Would you berate your best friend in the same way if they had a painful day? No?
You don’t deserve to be told these things either, especially by yourself.
Take good care of yourself, especially when you are in pain.