Rheumatoid Arthritis and how to keep chronic illness from taking control

I haven’t been posting much, because frankly RA has been kicking my butt lately.  So RA Warrior’s blog carnival about How do you keep the disease from taking over is very timely.

How do we all do that?

Firstly, sometimes I don’t.  Sometimes Rheumatoid Arthritis is my boss, and I do as I’m told.  Go to the couch.  Go directly to the couch.  Do NOT pass ‘Go’ and do NOT collect $200.

So that’s the first thing.

1.  Accepting that sometimes the pain is too bad, and you can’t win this fight today.  You have to rest, so that you can get up and fight another day.  Accepting this has allowed me to stop depression from taking hold.

What else?

2.  People.  My arthritic friends.  And one non-arthritic friend who gets it.  A very rare beast indeed!  Venting to a few people who do understand and don’t need to be reminded that I have RA, and that’s why I can’t come out to play today.  These people never tell me to just get more exercise, or get out more, or eat some sour cherries.  They sympathise, and tell me their stories too.  And they never, EVER play ‘my disease is worse than your disease’.  We sympathise and empathise and laugh and cry together sometimes.  These people let me be totally unreasonable and vent my emotions so that they don’t get bottled up and cause more disease.

Because I truly believe that negative emotions impact on our ability to heal.  So I need to get those feelings out…no matter how unreasonable, or silly, or painful to say.  Let them go, and take a little bit of pain away with them.

3.  Getting out and joining the world even though it hurts.  This is not the same as ‘you just need to get out more and everything will be OK’.  I painkiller up and try to join in with the healthy world, and if I can’t join in I get out there and watch.  So that I can still be included.  So that I can still be part of my child’s soccer game, or the back yard cricket game.  I tag along and walk slow around the dinosaur museum and take lots of candid shots.  I have the time to do that.  I don’t get out because I’ll magically be healed, as so many people seem to think.  I get out and try to be part of the normal world because isolation is the best friend of depression, which tends to hang out very closely with chronic illness.

Of course when I do this I need to steal myself against the people who don’t get it.  Those who say ‘I saw her out on the weekend and she looked FINE!’.  Or those who say “See?  I told you if you just got some air you’d feel better!’.

So that’s the next thing.

4.  I just don’t listen to the negative people anymore.  I smile and nod and don’t say anything, because let’s face it, these kind of people don’t listen to me, so why should I listen to them?  There is no use explaining to them that standing here watching the game is costing me dearly.  Costing me pain, costing me fatigue, costing me my afternoon, because I will probably have to spend it on the couch recovering from standing here for an hour and a half.  They don’t care enough about me to listen, so I don’t care enough about them to keep trying to explain.  They just take more of my energy, so I don’t waste it on them.

(Oh and when it all gets too much, see point 2 about ‘people’ and venting to the real friends who get it)

5.  Knowledge.  I have learned about my disease.  And I keep learning.  I don’t obsess…but I keep up to date.  I read about the latest drugs, and about those that have been around for a while.  I know what they do, and what to expect from them.  I read some very good blogs, and learn from others’ personal experiences.  And I don’t panic, or over dramatise.  The first time I experienced costochondritis, I felt like I was going to die!  But after reading a few blogs, I realised that this incredible chest pain was probably related to my RA, and not a heart attack, and it helped.  Knowledge is power.

6.  Hope.  As long as I have hope, I can keep getting up and fighting.  Usually this means hope for a new treatment option. At any one time I am either waiting for a new drug to be approved for me, have just started a new drug and am waiting for it to work, or I am accepting that the latest drug *didn’t* work for me.  When I get to the part of the cycle where I realise it’s been three months, or even six months, with no improvement, I really need that hope!  That something will work, that there is another option around the corner.  I keep up to date on the treatments that are available.  I look at medications, alternative therapies, and decide for myself if they might help me, or are worth trying.  Sometimes I try something, just because I need to feel like I am doing something.  Not passively waiting.

7.  Which brings me to exercise.  Exercise is key!  Some days I can’t exercise, of course.  Most days I can do something.  Riding a stationary bike puts very little pressure on joints.  Especially a recumbent bike.  Swimming is great, but I must admit I don’t enjoy it, so I don’t do it much.  Yoga/pilates is fantastic, even though it often hurts at the time.  Post class I feel stronger and more flexible.  No mean feat for someone with RA!  And I lift weights.  Very light weights for someone of my size and frame.  But I’m not in the gym to compete with anyone.  I’m there to improve my health and also keep depression at bay.  It’s another way that I feel I am fighting this disease, and not letting it take control.  I do as much with this body as I can.

8.  Perspective.  No matter how bad a day I’m having I always remember that there are worse diseases than Rheumatoid Arthritis.  And there are people with worse cases of rheumatoid arthritis than I.  I count my blessings.  I am still capable of many things.  I am not completely disabled.  I can still contribute to society, albeit in far smaller ways than before.

I once had a good career, and a husband who (I thought) loved me.  Now those things are long gone, along with financial security.  But I still have two wonderful children who love me and think I’m a great mum, even on my couch days.   I focus on what I have, and not on what I have lost.

9.  I blog.  Sometimes (as lately) I can’t blog.  I can’t write.  I can’t find the words.  But then, when I do get back to writing, it’s a release.  I still haven’t confessed to anyone in my real world that Arthrtic Chick is me…because it’s my safe place to vent and tell it like it is.  It’s where I can let my feelings out, and document my journey and share what I have learned.  And I have met some wonderful people through my blog, and I have been greatly helped by hearing their stories.

10. I give myself credit.  I am a single mother of two children, one with Asperger’s Syndrome.  I have severe Rheumatoid Arthritis.  I manage.  And I do it all alone.  I hope that one day I will have a partner again who will share some of this load.  But in the meantime, it’s just me, and I do a damned fine job of keeping the wheels turning.  I am very tough, because I’ve had to be.  And I’m proud of what I’ve achieved.  So I give myself credit.  And no one else has to.

EDIT!  Some of the great people who contribute to this blog have reminded me that I’ve missed a few things…so here’s a couple more.  Can’t believe that I didn’t mention them…they don’t belong at the bottom…

11.   I laugh!  I mean, I find things to laugh about.  I try to see the funny side.  Admittedly, not being able to open the juice bottle when you are thirsty and need to take your meds is not really funny.  But giving the bottle to your 12 year old son and asking him to open it for you kinda is.  I laugh.  I make jokes.  I see the lighter side (most days).  I subscribe to funny pages on facebook.  I watch a funny tv show.  Or a funny movie.  I find reasons to laugh and not dwell on how unfunny Rheumatoid Arthritis really is.

12.  I think positive.  This sounds trite…but its not really.  I am always looking for the bright side.  The upside.  The silver lining.  It is ALWAYS there…even if sometimes it seems dwarfed by the downside.  What you focus on is what gives you strength.  So I focus on the positives.  Sometimes the only positive I can find is that I don’t have cancer.  That still works.  There is *always* someone worse off.  And I usually don’t have to look far to find them.  And if I can, I help them.