The truth about living with Rheumatoid Arthritis

#chronic illness

Things Rheumatoid Arthritis has taught me

RA has been a teacher.  Not my favourite way to learn, I’ll admit.  But I have learned a lot.

I, like many it seems, used to be a Type A, in charge, 25 hours in a day kind of person.  I had a good career, two children, one of whom is on the Austism Spectrum.  And I thought I was a pretty good wife.  I cooked and cleaned and generally took care of stuff.  I helped out at the school, I had time to listen to my friends troubles, and I was happy to help.

And then Rheumatoid Arthritis hit me like a freight train, and left me as a little puddle of goo on the ground.  The kind of thing people step in, and wince with disgust and scrape off their shoe.

Lots of people treated me that way…with disgust.  Disdain.  Disbelief.

They thought I was making up the degree of pain I was in.  The severity of the disease.  Very few bothered to educate themselves.  They didn’t care enough.

That’s people.  They have their own problems.

For me, my whole life changed.  Much as I didn’t want it to, Rheumatoid Arthritis occupied Centre Stage.  It controlled me.  So I had to learn to adapt.  I learned a few other things too:

 

  1. I am very, very strong.
  2. I don’t sweat the small stuff.
  3. A smile helps.  Mine or someone else’s.
  4. I need to be realistic.  Wishing things were different doesn’t help.  It just saps my energy.  So I work with what I’ve got, and make the best of it.
  5. Worrying about things I can’t change will only bring me down.  I will change what can be changed, and I have to accept the rest.  I have to make the best of what I have.
  6. I am luckier than many, many other people.
  7. I need to prioritise.  I have to choose what’s important in every day.  I make mental lists…What MUST be done. What it would be great if I could get done.  And what is just going to have to damn well wait until tomorrow.
  8. What other people think doesn’t matter.  This one was huge for me, but there is no changing other people’s opinions.  Some will always thing I am a malingerer.  Some will never understand.  Some will always make nasty remarks.  Some will always tell me their pain is worse than mine.
  9. Pain and happiness are NOT mutually exclusive.  I have to try and do the things that I enjoy.  There are some things that are now impossible.  Others that I can still do, but not without pain.  Others that I can do on some days, but not others.   I can still enjoy these things.  It’s very, very important to keep doing the things that make me happy, even if I can’t do them the same way I used to.
  10. Patience.  I can’t do it all myself anymore, or at least not all in one day.
  11. How to ask for help.  No wait, I’m still struggling with this…
  12. Who my friends are.  My real friends.   My real friends understand my limitations.  And they still want to spend time with me.  And not just when I am ‘well’.  The people that make me feel guilty for cancelling at the last minute, or saying no to an invitation, or not participating in their sky diving adventure are not friends.
  13. I can do most things that healthy people can do.  But it will take me a lot longer, and it will almost certainly hurt me a lot more.
  14. Doctors don’t know everything.  They are not gods.  They cannot fix every problem.  They can offer options.  The responsibility for my health is still mine.  I make the final decisions.
  15. Accepting my limitations does NOT mean I am giving up.
  16. I still have a lot to offer.  I am still capable of a lot of good.
  17. Did I mention I am very, very strong?

 

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Rheumatoid Arthritis on holiday

Ok, bad headline. Rheumatoid Arthritis, the way that I have it, is NEVER on holiday. Maybe it’s too lazy sometimes to make me really hurt badly…but it’s always there digging the boot in somewhere.

Going on holiday when you have Rheumatoid Arthritis is a serious business. First and foremost, many kinds of holidays are out of the question.

Camping for starters. Sleeping on a thin camp bed would equal not being able to move at all the next day. No microwave, no heat packs…if there are no hot showers, then it’s just pure torture.

Holiday’s aren’t supposed to be torture.

So it’s hotels or cabins. The cabins have to have the aforementioned microwave, so you’re talking 3.5 star at least. That would be about $150 – $200 a night minimum.

There is no cheap holiday when you are chronically ill.

Then you need your heated throw and maybe you need a fridge for your meds. There is no ‘roughing it’ with RA…not because you’re a sook, or you don’t like to (I used to enjoy it) but because it will cripple you if you try. The bed needs to be halfway decent or you won’t move the next day.  You will not enjoy it. It will NOT be a holiday.

There is no holiday from moderate to severe Rheumatoid Arthritis.

There are certain things you need access to. As I said, heat packs, showers, and microwaves are essential. Maybe even a fridge because some medications need to be refrigerated. Mine don’t, and anywhere that has a microwave will have a fridge, anyway. But it’s worth mentioning.

Along with the nsaids, dmards and corticosteroids, I also need to take a range of painkillers along for the ride.

I’m fairly skilled at juggling my meds for the best possible effect. Three days before I go on holiday I up my prednisone to 15mg. This will give me enough energy for the 3 hour drive, and means (during the day at least) my pain is mild to moderate.

Night time is still a bitch for the most part, and that’s when I reach for oxycodone. Slow release first, and if that hasn’t made things bearable, I’ll top it up with the fast acting formulation, that kicks in within 30 minutes. Then I’ll drink a glass of red wine to help it along a little more.

If I can sleep, the next day will be OK. I will wake up in pain, but it will be bearable. I will slowly be able to wake up and start to move. It usually takes about an hour and a half for me to feel human, and join civilisation.

I often feel very guilty on holidays. Especially now that I am single, and I am holidaying with my kids on my own. I am not even close to the person I used to be. I can join in the play with my kids, but then I need to rest. I feel like I am constantly saying ‘OK, back to the cabin to rest’ and then when I have recovered, we can go back to the beach again, or walk to the shops again, or ride scooters.

I’m lucky my kids are now at an age where they are starting to understand. My son is 11 and my daughter is 10. They both still say to me “I wish you didn’t have arthritis. We used to have much more fun before.”

I’m surprised they even remember anymore…it’s been 5 years now. But they do, and they, like me, hope that one day I’ll find the combo of drugs that might kick my rheumatoid into remission.

If I upped my prednisone to 25 mgs, I would only have mild aches and pains. But I would also have high blood pressure, and anxiety and total insomnia. I get these side effects more mildly on 15mg. It’s manageable.

It’s always a balancing act…the lesser of evils.  Right now I’m lucky that the predisone means I am here at all. Without it, I couldn’t take my kids on any kind of holiday.

But just once, I’d like to be able to go somewhere without taking a whole bag full of stuff (heated throw, wheat bags, painkillers, corticosteroids, nsaids, dmards) just to manage my RA.

Just once.

Rheumatoid Arthritis and treating the patient like a person

I saw rheumy last Friday.  I have been feeling pretty crappy, so it’s taken me a few days to get around to this post.  It wasn’t the best appointment…or at least it didn’t start that way.

It got me thinking about the importance of a collaborative approach to treating Rheumatoid Arthritis, or any kind of inflammatory arthritis.  Heck, any kind of chronic condition.

Normally a ‘collaborative approach’ means ‘lots of specialists who are supposed to talk but never do’.  What I mean is collaboration between the patient and the rheumatologist.  A partnership.

My usual rheumy was called away to an emergency in the hospital.  So I saw the registrar.  I’d never met her before, so she gave me  the 30 second history treatment…questioned everything I was doing and made remission seem like a very simple thing to achieve.

She criticised my methotrexate dose, my prednisione dose, my Naprosyn dose.  Lectured me on the importance of exercise, and didn’t stop to listen when I explained that I DO exercise, and basically treated me like an object that she needed to colour by numbers.

She was young.  She was going by the textbook – not the patient.

She felt my joints, felt the bogginess, marvelled at the lack of swelling – I told her I don’t often have swelling – and questioned me on the level of pain.  When I told her I’d been taking 15mg of prednisone for the last two months she launched into a lecture on prednisone and how terrible it is.

I know.  I take it every day. I know what a terrible drug it is.  But it sure does work.  And I needed the pain relief.  I had to make a hard choice.

Then I couldn’t take it anymore.  I gave her a lecture back. Very politely, but very firmly.

Prednisone is essential right now.  Until I took the prednisone I didn’t realise how much pain I was dealing with every day.  It sneaks up on you, gets a little more, and a little more, until it’s actually unbearable.  But you have to bear it.  Life goes on.  There is no one to take the pain for me.  Or even take on some of my load to make my life easier.  I am alone.

So I am very good at prioritising. I know what MUST be done to keep my kids safe and healthy and (mostly) happy.  Everything else is gravy.

I stopped her dead and explained just how bad the pain had become.  I told her very frankly what it felt like, and what I was and wasn’t capable of.  And then something strange happened.

She apologised.

And slowed down, and started again.

She stopped telling me I need to up my methotrexate to 15mg immediately.  (I refused to do that, anyway – 10mg is screwing me up enough already!)

 

She read back over her notes and thought for a minute.  She looked back over my file, where my significant problems with methotrexate are well documented, and acknowledged my desire NOT to up methotrexate for a long while – I need a break from side effects.

She suggested I add in salazopyrin in a few weeks when my side effects have stabilised on methotrexate.  She wrote down a slow, long taper for the prednisone instead of the sharp quick ‘you have to get off this stuff’ taper she originally wrote down.

I guess she had a light bulb moment and suddenly understood that after dealing with RA for five years, and all the meds and the pain, I’m worth consulting in my own treatment plan.  I have studied every treatment protocol, I understand what each drug does, and what it should do, and what it shouldn’t.  I accept the risks and the side effects, unless the toll is too high, and then I refuse.  This is my choice.  As I often say, there are no longer any good choices on the table.  The mild drugs like plaquenil and simple nsaids don’t do the job.

It is my body, and my life and it’s in my best interests to be informed, and proactive.  And it’s in my treatment provider’s best interest to respect that, and respect me, and discuss options with me, and talk to me, not just talk at me.

We both need to view it as a partnership.  But ultimately I am the one who has to live with the consequences of these treatment decisions.  And some of the consequences can be heavy, these are some powerful medications we’re talking about.  But the consequences of NOT taking these drugs can be just as severe.  It’s a crap shoot.  But because I am the one that needs to live with it, I am the one who has the final say.

Ultimately it was a good appointment – but it took a lot of bridging of the communication gap.

Which really highlights the benefits of seeing a regular rheumatologist, one whom you can get to know, and they can get to know you, as well as gets to know your disease.  I know I am not ‘textbook’ case.  I know I experience side effects that most people don’t experience at such low doses of methotrexate.  I also know that I am a well informed patient, I have researched my disease, and I have suffered it for five years.  I am proactive in my treatment.  I look after my general health, I exercise even when it feels too hard, too painful.  Because I know I need to do all this if I am to have any hope of a normal life again.

And my regular rheumy knows this too.  He knows not to lecture me, because he knows I am already doing all I can, and I don’t need telling.  My health is my biggest incentive – and I work hard. New registrar rheumy learnt a lesson in listening, and taking a moment to assess a patients personality and state of mind.  It only really took her an extra five minutes.

I go back in 10 weeks.  I hope my regular rheumy is there.  I need to see him.  He knows me best, and I trust him completely.  But if I see new registrar rheumy chick again, I will be OK with it.  We will continue to build a relationship – because in long term, chronic conditions, there needs to be cooperation between the treatment provider and the patient.  There needs to be communication and mutual respect.   There needs to be an honest partnership, and there needs to be understanding of the disease, and the person.  They are not one and the same.

Rheumatoid Arthritis and Friendships

When you think of the casualties of chronic disease, you don’t immediately think of friendships.  Our relationships with others are built on a variety of factors.  Sometimes a disease like rheumatoid arthritis changes our ability to do the things we used to do, be the person we used to be.  Some relationships don’t survive.

Many relationships don’t survive.

I had coffee with a fairly new friend yesterday.  ‘New’ as in I haven’t known her very long.  We’ve started getting together for the odd coffee, talking about life, usual chick stuff.  It’s been really pleasant.

Yesterday we met for lunch.  After about 15 minutes of chat she asked me if my jaw was giving me trouble.

It was.

I asked her how she knew?

She said ‘The way you’re talking.  I can see that you’re trying to open your mouth as little as possible.’  Then she laughed and said “Also, you ordered the soup!”

She remembered from a few weeks ago, when we’d only just met, that I’d make some crack about everything in my meal plan needing to be blendable that week.  We had talked briefly, and in a light hearted way, about my RA.  It was a quick conversation – I try to educate, but not drone on.

But she remembered.

It didn’t go in one ear, and out the other.  While she was listening as I briefly explained about arthritis in your jaw, and TMJ disorder, she wasn’t just faking the right noises and thinking about what she was going to say about herself next.

She really listened.

She learned that rheumatoid arthritis is not a disease that old decrepit people get.  She learned that it is a serious illness.  She learned that it can affect all kinds of joints, not just hands and feet.  She stopped and really thought about what a pain in the arse it truly is to not be able to open your jaw all the way.  Or to have it locked shut.

She learned.

She did all of this because she is a special person.  A person who is not completely wrapped in her own problems.  Someone who is able to empathise with others.  Empathy is a trait sorely lacking in our fast paced, instant gratification world.

It’s a trait I have found in many people who have suffered tragedy or illness.  I suspect as I get to know her better, and she trusts me more, I will discover something in her life that causes, or has caused her, great pain.  I hope she trusts me enough to tell me one day.

I hope even more that there is nothing, that she is just a naturally kind and caring person.

I have always said that saying that rheumatoid arthritis is an invisible disease is a fallacy.  At least in moderate to severe cases, the signs are clearly there, easily able to be seen.  But only if you know what you’re looking for.  And only if you care enough to pay attention.  And I’m not talking about deformed hands…thankfully we don’t all suffer obvious joint deformity.  But the other signs are just as clear.

My new friend listens, learns and remembers.  She’s an amazing person.  She’s a keeper.

 

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Rheumatoid Arthritis – chronic illness and marriage breakdown

I’ve heard about it a lot.  I’ve read other people’s accounts.  I understand why it happens.  But I didn’t think it would happen to us.

My marriage has broken down.  We are separating.  Not permanently, perhaps.  But we are taking some time to think things through.

Is my disease the reason?  Not the entire reason.  But it is probably the main one.  It is certainly the catalyst.

The bottom line, fact of the matter, is that I am no longer the same person that my husband married.

The rules have changed a lot, and he liked me better the other way.  Yes, we all promise better or worse, sickness and health…but do we really think anything bad will happen when we take those vows?  Do we really know how we will react until it *does* happen?  Aren’t we making promises we have no way of knowing if we are capable of keeping?  We like to think we will step up, but we have no way of knowing until we are tested.

So I’m not angry at my husband (well, not most of the time – I’m not a saint).  I am in pain every day, and I guess talk about it a lot.  My life revolves around medications, side effects and which joint is hurting the worst right now.  I can’ walk very far, and some days I can’t really walk at all.  I swore than RA would not rule my life.  But it does, I guess.  I am not the person I used to be.

When I go into a flare, my husband walks away.  Literally, figuratively and emotionally.  He spends more time at work, at the gym, or just in another room.  Anywhere but with me.  So I feel very alone, and I tell him all the more that I am in pain and I need him.  So he feels even more trapped and pulls away more.  I can see the cycle, I just can’t break out of it.

And the truth?  If roles were reversed, how would I be?  If I could walk away from RA, and all that goes along with it…would I?  Or do I love my husband enough to stand by him no matter what?  It’s not a question I have to answer…I would stand by him forever, through whatever, no matter what.  But I’ve thought hard about it enough that I at least understand where he’s coming from.

He feels terrible about it.  He feels truly guilty that he can’t support me.  He feels awful about the fact just wants to get away from me whenever I’m in a flare.  He feels horrible blaming me for the negative environment in our house.  And blaming me for his own depression.

Rheumatoid Arthritis is forever.  Not all marriages are.  I understand that  he feels his whole life has been rearranged without anyone checking with him, that all of his choices have been rudely taken.  I understand how that feels…the fear, the uncertainty…the sense of the trap clicking shut.

I understand because I went through all of these emotions as well.  And I have the added distinction of actually living with the pain and disability as well.  But my lack of ability affects him just as surely. And his pain is there, its just a different kind of pain.

So I set him free.  And, irony of ironies, now that I have said ‘you’re free to go’ he doesn’t want to.  He wants to try again.  He is promising me the world to just give him another chance.

But I can’t trust him.  I can’t rely on him.  I don’t believe that the next time I have a full body mega flare, or an issue with my heart, or my kidneys, or whatever else, that he will be there.  That he will be my rock, that he can be strong.  That he will stand next to me, and put his arm around me and tell me everything will be alright.  Because he’s never been there before, he has always walked away.  And we’ve been around this issue for the last year or more.  I have told him its over,given him another chance…and around we go again.

No more.  I have to draw the line now. He has to go.  And if he loves me, if he really does, he will find his way home.