Five things I’ve learned #RABlog

I’ve learned a lot of things, thanks to my favourite teacher, Rheumatoid Arthritis.  Things about myself, and things about other people.  About life.  About priorities.  About finding meaning and letting things go that do not mean anything.  Cutting it down to five things is difficult.  I’m scrambling to write down what the really important lessons have been.   I can’t decide what has been the most important, but here’s a few, in no particular order.

I can keep going through more pain than I ever thought possible.  Everyone can.

Pain is now a non-negotiable.  It’s a part of my life now, and most likely always will be. Some days it will pick me up and throw me down and there will be nothing I can do about it. Other days I will be able to work through it, or work with it.

The thing is, I will always be in pain. But how much I suffer with that pain is up to me.  If I choose to focus on the pain, on the things I can’t do, on the misery it causes, I will suffer more.

If I accept my limits.  If I make the most of the better days.  If I focus on the small achievements.  If I remember that I am better off than so many other people. If I am grateful for the life I have, my family, my friends, that I have a roof over my head and food on the table…I will suffer less.

Pain is inevitable.  Suffering is optional.  I used to really hate that saying. I thought some idiot made that up.  Because the fact is that there is an inherent amount of suffering involved in being in constant pain. There is a degree of suffering that just comes along with that deal.  Pain hurts.  Hurting is not fun.

But what it means is we can minimize our suffering, or maximise it, by the way we think.  By the way we respond to that pain.  By not letting it be the centre of our world, always. By having a vent and a complain sometimes, sure, but by not making a lifestyle out of complaining.  By remembering that all life is precious, and damage is not death.

I have learned to appreciate the little things.  My kids laughing.  The warm sunlight on my face.  The bliss of soaking in a hot bath.  The smell of clean sheets.  Good coffee.  A glass of wine at the end of the day.  Talking with friends – really talking – about stuff that matters.  So bored of small talk. Hugs.  The sound of rain.  Birds singing. My dog’s slobbery kisses.  My cats’ purring.

So many little things every single day that make me happy.  So many little things I never really noticed or focussed on before I got sick.  I was far too busy.  There was too much work to do.  There are definitely ways that RA has improved my life.  I just wish that I’d been smart enough to work them out WITHOUT becoming chronically ill.

Rheumatoid Arthritis is incredibly varied. I have met people who have one joint flare once a month or so. And some people who are completely crippled by the disease. And everything in between.  And that the world at large does not understand this, but even within the RA community there is a lot of misunderstanding about this.

There really isn’t a ‘typical’ RA. But it does tend to follow a few main courses.  Wherever you fall on the spectrum, RA will certainly cramp your style.  But it may be anything from an inconvenient pain that you know will be gone tomorrow.  To a whole body disease that attacks your heart, lungs, kidneys, liver, eyes…almost any internal organ.  RA is not one disease. It is many. Some are mild, some are severe.  Each person has their own story. And each is important.

Doctors are not gods.  They are just people, doing a job to the best of their ability.  They are flawed and they make mistakes.

For me the sign of a good doctor is one who’s prepared to listen, and work through options and ideas with me. I’m a very informed patient, at least when it comes to autoimmune arthritis.  My doctor knows a whole lot more about medicine than I do, but I know a lot about a very narrow subject.  The best outcome for me is when we work together as partners, with mutual respect.  He or she has the theoretical knowledge and access to studies and statistics and a wealth of experience with many patients. But I have lived experience.  I know how it feels to live with RA.  I am the only one who knows what my RA feels like (see the point about – RA varies)  and he/she needs to listen to me, just as I need to listen to him/her.  We both have our part to play.  His/her experience will guide me to the treatments most likely to be effective for me, and it’s my job to take the medication.  Deal with the side effects. Not give up too quickly on a therapy.  And be honest at all times.

I have nothing to feel guilty for or ashamed of.

As long as I am doing my best every single day, that’s good enough.  My worth is not based on the money I earn.  Or the size of my house. Or the newness of my car.  While at times I wish I could do better for my children, provide a better life, give them more, doesn’t every parent feel like that sometimes?

Rheumatoid arthritis has made me a kinder, more compassionate person.  It has also made me a tougher, more independent person.  I’m far less judgmental than most.   I spend a lot of time trying to help other people, but in truth I always did that.  I’m a good listener, and if there’s one thing that society is sorely lacking, it’s people prepared to listen to other people’s problems.  And care.

I have value.

Once upon a time I was a driven career woman.  A computer professional, at the top of my game.  I was earning big money, three times the average wage at one point.  I wasn’t even sure I wanted children, it was all about career.

Things changed.  And that’s OK.

That’s five, but there’s one more. When I’m out of steam, I’m out of steam. It’s not negotiable. Goodnight 🙂