The truth about living with Rheumatoid Arthritis

Must Read

Depression can sneak up and knock you down so you can’t even come up with a snappy blog post title

agonyThis morning I felt great.  Things were looking up.  I was happy.  And then suddenly everything changed….Why? I don’t know.  But suddenly my world shifted and the wind was knocked out of me.  That’s the thing about depression. You can’t predict it. Sometimes you sail through stressful situations that you’ve been dreading. And other times an ordinary day sends you to the pit without warning.

Grief.  It is grief.  That crushing feeling deep in your chest.  You can’t breathe…you don’t even want to.  You can’t cry, because in order to cry you need to breathe,  and you can’t. You can’t move. You can’t think. You can only feel.  A pain so deep and rending that it’s almost exquisite in its agony.  Perfect in its torment.

You now understand why artists struggle to capture this pain.  Words are ineffective…words are blunt instruments, and you can’t put them together in a way to make anyone understand how this feels.

Sometimes it’s a song. Sometimes it’s a poem. Sometimes it’s a sculpture, a painting.  Something reminiscent of… a teardrop, a heart, an embrace.

If it’s grief for a child, there is no hope. Your soul will mourn forever, and these attacks will always come.  For nothing can return that piece of your soul to you.  There is only hope that the gods will reunite you one day.

If it’s grief for a romantic partner, there is hope that one day you might love another person more than the one you have lost.  But you don’t want to. You can’t imagine how. You can’t imagine to even begin a search…because you are faithful to your love, regardless of the fact the he doesn’t love you.  Because you love him as deeply and utterly and completely as he rejected you.

If it’s grief for a life you used to have, a body you used to control, an existence where pain was not the overwhelming, controlling feature of every day and night, there is hope of sorts.  Hope for remission.  Hope for a cure, even.  But the longer the life of pain continues, the more that hope fades. Pain changes you. Pain has changed you. And there is no going back.

If I were pain free now, and forever, I would still never be the same carefree person I was eight years ago.  Because I know what it is like to lose everything.  Your love.  Your friends.  Your people.  To be abandoned.  To be left behind.  To have all that you gave, reduced to rubble.  Because you got sick.  And they didn’t believe you.  They didn’t support you. They only wanted the ‘other’ you. The healthy one.  The one that fetched and carried and kept them smiling with silly jokes and surprise dinners and those special moments where you thought you were carving your love into stone.

Instead it was all built on sand…that shifted and lost strength as surely your body did.

You are different now.  There is no going back. The hope now, is that you can find a life where you can be happy along with your limitations….and forgive the unforgivable.

And while it has been many years, and logic has overcome most of the hurt, sometimes that familiar pain intrudes uninvited.  And crushes me.  And I can’t breathe.

I try to live my life as if what I want most in this world was never a part of it.  I banish it from my thoughts whenever my mind dares wander there.  Even while I do all of this, sometimes, out of the blue, my heart breaks all over again.

Today was one of those days.  Why today?  I don’t know.

Sometimes I know why. Sometimes I run into people I used to know and talk about things we used to do.  And then I am desolate for days while I pull my senses back into equilibrium, and wait for logic to reassert itself.

Sometimes I don’t know why. Perhaps a dream that disappeared on waking, leaving just a shadow in my heart and on my mind.

Whatever the reason, the searing, hot pain has followed me all day.  I have forced myself to try and DO something. Anything. NOT stay in bed and wallow. NOT stay in bed and dream. NOT stay in bed and remember.

I went to the hardware store to try and take care of a few ‘fix it’ jobs that need doing. I bought some screws and something metal.  I think I may in fact be a man, because I felt slightly better after doing all this…lol.

Walking through the endless warehouse of all things home improvement, my body started to ache in that familiar way, and I knew the fence would not be fixed today.  But at least I had gathered the necessary equipment.  By the time I had paid I was wishing I hadn’t come at all, because the 15 minute drive home (to my couch) seemed insurmountable.  Turn up the car stereo and play ‘Roar’ by Katy Perry.

My children are both going out tonight – dinner with their Gran, for her birthday. I very much wanted to go.  Because even though I am now the ex-wife, my (ex) inlaws still treat me as one of the family and make me welcome at family functions.  It would have cheered me up to be with them tonight, but arthritis pain means that I am home on the couch.  Alone.  With my thoughts.

At least I can cry now.  I can breathe…the ache is duller, the torture just a twinge.  But tears need to fall, this wound needs to be cleansed yet again.  How many more times?  I don’t know.  Perhaps writing these words will make it one time less.

The narcotics that work so well at taking the edge off the physical pain also numb emotional pain. So tonight I will be very careful not exceed 40mg of oxycodone.  Numbing physical pain with oxycodone is appropriate.  Numbing emotional pain with narcotics is the first step to addiction, and a world of new problems.

I do not need more problems…certainly not ones of my own making.

And so I will put on the song that broke my heart this morning, and the tears will flow.  And perhaps I will try to draw, to sketch.  And I will read this back, and decide whether I have the courage to post it.

I decided late last year that I hadn’t been honest enough in my blog.  I am so focussed on being positive, I didn’t write about depression.  Only telling half the story is only sharing half my life, half my experiences, and while I believe we are all entitled to privacy, if I am going to put out there that I am living successfully with autoimmune diseases and trying to be positive, it is a lie to say that I never get down, that it never beats me, that I am always able to smile.

I hate liars.

So, unsure of what people want to read, I lost my way.  Now I have resolved to tell more about the hard days but still, I  find it absurdly difficult.  To find the words.  Perhaps my positive attitude is a manifestation of my denial.  My refusal to admit that I am ill. That I am suffering.  That I will never again be that fit, healthy person who could run and run and run, and work full time and raise two beautiful kids…and…keep my husband happy.

I still have two beautiful kids.

Please don’t worry about me.  I will be OK.  I have people to call if the sadness becomes overwhelming. I have a wonderful psychologist and general practitioner and I have 24 hour support lines to call.  I will be OK.  I wanted to write this down…but I don’t want to make other people sad.  But maybe if you’ve felt this too, you’ll know you’re not alone.  maybe you could try writing it down too.  I think it has helped. 

Rheumatoid Arthritis and pain – pain and happiness are not mutually exclusive

happiness-painI gave up any expectation of ever having another day without pain a few years ago.

This doesn’t mean I gave up. 

It was actually a liberating experience.  It allowed me to stop wishing for things I can’t have, and start finding ways to make the best of what I still DO have.

Once I stopped waiting for the pain to go away, I started living again.  Really living.  Not the way I lived before Rheumatoid Arthritis, of course.  I have physical limitations now. There are many things I will never be able to do again.  But I appreciate every moment that I am upright and moving, and able to work and play.

I am mindful, and I am grateful.  And I am happy.

It’s not possible to be happy while you are focusing on all the things you can no longer do.  On all the things you have lost. On the people you no longer see.  On all the cruel things people think its OK to say to you.

Letting all the negative thoughts go is hard work.  It’s a process, and it takes time to get through.  There are no time limits.  Everyone is different, and everyone gets there in their own way, and in their own time.

The day that shift happened for me was the day I was able enjoy life again.

Don’t get me wrong, I still have my pity-party days.  They are totally allowed.  In fact they are essential.  RA sux bigtime.  Being in contstant pain sux bigtime.   Ignorant, arrogant, insensitive people who say the most appalling things to me suck bigtime!

Sometimes I watch people moving around, knowing it doesn’t hurt them to do so, and I feel the most intense jealousy I have ever known.

I listen to them complain about their minor niggles, or a bad hair cut and I struggle to be supportive and NOT tell them to suck it up and be grateful that their whole body is not on fire.

Some days I just cry.

I have to get these emotions out, but believe me, it’s not easy to do.  I don’t like to admit I can’t do something.  I don’t like to admit I can’t cope.  I don’t like to admit defeat.

I have a very good psychologist whom I see about once a month.  To vent. To explain (endlessly) what it is like to be locked in a body that hurts every day, and how strong I need to be to live my life in a meaningful way.

How hard it is to take each breath and accept that it’s just going to have to hurt.

Because that is the only option. 

The alternative is to spend my life on the couch, or in bed, waiting for the day the pain goes away.  But what if that day never comes?  What if the pain NEVER goes away?  If I am depending on being pain-free, haven’t I then wasted my life?

When RA first hit and knocked me down hard. I waited for a few months.  I believed in the promise of remission. I had to believe in that promise, I had to have that hope, in the beginning.

Now, seven years on, I have to believe in my ability to enjoy my life with pain.

Pain and happiness are NOT mutually exclusive.

My pain is in my body…in my joints, in my muscles, my tendons, my skin, my eyes…so many places.

My happiness is in my heart, my soul….myself. 

 

Note:  I take all my medications religiously.  I am still searching for a combination of medications that will get me closer to pain free…and I still believe I could be pain free one day. BUT I don’t let the pain stop me from living a meaningful life.  Each new medication gives me hope.  Each new treatment option is a chance to get my old life back.  And if I get that, I will feel like the luckiest woman alive.  But if I don’t, my life will still be worthwhile and wonderful.

 

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?

 

[amazon_template template=”2″ id=”B0069RJJ00″]

Rheumatoid Arthritis and prednisone – there is no cure for Rheumatoid Arthritis

Prednisone is NOT a cure for Rheumatoid arthritis.

There is no cure for rheumatoid arthritis.  There are treatments.  There are ways to manage the disease.  There are therapies to manage the pain.  There is no cure.

Recently I’ve been posting on my personal page about the physically active things I’ve been doing.  Things like running.  Doing a Step class.  Hitting the gym often, sometimes doing two classes a day.  I’ve been posting this stuff because it honestly makes me so happy to be able to do these things!  It is bliss!  It is as close to normal as I have felt in five years.  I haven’t had a knock-me-on-my-butt-full-body-mega-flare in nearly three weeks.

That is the longest I have gone without a mega flare.  I’ve had twinges.  I’ve had aches.  I’ve had one or two moderate pain days.  But I haven’t had a severe pain day where I can’t get up off the couch.

In five years that has never happened before.

So I think it’s understandable that I’m feeling a bit of euphoria about my current physical state.  I know it can’t last…I am tapering down on the prednisone and with each milligram less, I feel the pain increasing.  I know what is waiting for me when I am off prednisone, and so I am making the most of this time.

The interesting thing is the comments I have been getting from people.  Some of whom should know better.  Some of whom are genuinely happy, if misguided.  Some of whom have darker motives.

People keep telling me how happy they are that I am cured.

*dumbstruck silence*

I am NOT cured.  Prednisone is NOT a cure.  It is a reprieve.  A pain holiday.  A short, and very necesary break from the pain, stiffness and fatigue of rheumatoid arthritis.

It is not a cure.

Prednisone means I can run and do step classes.  It also gives me a resting heart rate of about 95 bpm, anxiety, insomnia, and shoots my blood pressure too high.  Long term it will rot my bones and give me osteoporosis.  It will mess with my blood sugar levels and cause diabetes.  It causes cushings syndrome.  It can cause depression and other psychiatric symptoms.  The way my doctor put it was pretty succinct…’every bad thing a drug can do to a body, prednisone will do’. But when it also takes severe pain down to mild pain, and allows me to live a relatively normal life, it is oh so easy to forget that.  It is oh so tempting to just forget that.

Anyone who has a moderate to severe form of inflammatory arthritis has probably been on prednisone at some point.  It’s often used to get a bad flare under control.  It’s also used long term, but this is a last resort, for those that don’t respond to anything else.

So far that has been me – prednisone is the only thing that can get me close to normal.  I am on a bunch of other drugs.  Most notably methotrexate…I’m waiting for that to work.  I’m only just at a therapeutic dose now, however.  So IF it helps, I might start to feel some improvements in about 6 weeks.  If it helps.

It’s all so slow.  In the meantime, I need some prednisone to get me through a very tough patch.  I have been in pain for five years.  I need a holiday.

I am not cured.

A day in the life of Rheumatoid Arthritis

what does a rheumatoid arthritis flare feel like

Image source: http://www.anesthesia.org/images/pain3.jpg

2am. I am awake because there is pain all over my body. My ankles and knees are aching. I want to throw off the sheet because it feels too heavy. But it is cold, so I keep it over me. My electric blanket is on, in the hope that the heat will help ease the pain. It does. Some.

My hands hurt too. And they have pins and needles. Not the kind that tickles…the uncomfortable kind. They are going numb. And yet they still hurt…how does that work?

My elbows ache, my shoulders, my shoulder blades….there is no way for me to lie without putting pressure on a flaring joint. I can’t roll over…my lower spine (SI joint) feels like someone has stabbed me with a screwdriver. Each time I breathe in and out my ribs feel like I am being stabbed with hundreds of knives. My rheumy tells me that’s costochondritis. Always nice to have a name for things…not that it helps at 2am.

Should I take pain killers? From long experience I know I would need strong narcotic pain killers, like oxycodone, to have any effect at all. I have tried everything from panadol right up to oxycodone. I have a range of pain killers of varying strengths.

If I take the heavy duty painkillers I will have a drug ‘hangover’ tomorrow. I’ll feel sleepy and dopey and won’t be able to function anyway. I already took oxycodone at 7pm. That wore off long before midnight.  Now the pain has gotten so bad that I am awake again. If I am hungover tomorrow I won’t be able to work. But if I’ve been awake all night, same deal. I decide to tough it out. I’d rather be lucid.

My Achilles tendons are aching – I don’t want to stand on my feet because it feels like they will rupture. My feet feel like they are broken, anyway. Someone mentioned plantar fasciitis once or twice. My rheumy? My GP? Who can remember at 2am?

I stand up and the pain shoots through my Achilles tendons. Achilles tendonitis? My rheumatologist has explained all about enthesitis. The inflammation of the insertion point where the tendons connect to the bone. Very common in the Achilles tendons and people with inflammatory arthritis are prone to it. I also have a lot of trouble with the tendons in my hips.

Enthesitis. Just another word for ‘pain’ as far as I’m concerned.

It feels like I’m walking on glass as I hobble to the kitchen to heat up some wheat bags. Ten minutes later I am back in bed, on my back, with a heat pack across my hips, one across my knees and one across my ankles. I have wrapped one around my jaw as well, because lately it has been aching. My temporomandibular joint (TMJ) is inflamed also. I have been playing my own personal game of ‘Will it Blend’ at every mealtime for weeks now.

I hold the last heat pack in my hands. My aching hands. And I lie there and try to sleep.

3am. Still lying here.

4am. Still awake. The pain has not subsided. I am starting to drift though…at some point sheer exhaustion takes over.

6am. I am awake again. I must have fallen asleep sometime around 4am. I don’t feel rested, although the pain is not as bad now as it was. My heat packs are cold and heavy, so I push them out of the bed. My body feels heavy because I am so tired. I will try to go back to sleep for another hour. I don’t have to get the kids up until 7am.

6:30am. I am getting up. The pain is getting increasing again, and lying here is only making it worse. If I get up and start to move I’ll feel better than lying here. Oh and coffee. Coffee will help.

My eyes feel gritty and dry. Like they are full of sand. It stings. The light seems to make them sting more, but I can’t go around with my eyes closed all day. Is this iritis? Sjogren’s Syndrome? My rheumy has mentioned both. I have to put eye drops – fake tears – in my eyes several times a day. To lubricate my eyes, to prevent the discomfort. It’s just one more little thing.

Standing up again. Pain shoots from my feet through my knees and on to my hips. Looking in the bathroom mirror, my eyes are bloodshot and so swollen it looks like an allergic reaction. But its not. It’s inflammation. Attacking my eyes. Another of the joys of RA – it can attack anywhere. So much more than just sore hands and feet!
I can only penguin shuffle off to the kitchen to make coffee. There is no point in limping – RA is symmetrical. Which side would I limp on?

Thank the gods for those little rubber mini sized mat things that I use to open jars. They allow me to grip the coffee jar, and get it open. Things would be substantially uglier if I couldn’t get my morning coffee…

While the coffee is on the stove, I heat up my heatpacks again. I strap one to my lower back and hang another over my shoulder. I can’t raise my arm above half way this morning. The heat should help loosen it up soon.

I wish I could strap a heat pack to my jaw. I have a constant dull ache in my jaw, which gets worse if I move it. Even to talk. If I try to chew something the pain is sharp and intense. Lucky you don’t have to chew coffee.

7am. I am nearly finished my coffee and I am feeling more human. I am still stiff all over, and as I go through my gentle stretches to try and ease some of the stiffness and relieve some of the pain. I envy all the people who can jump out of bed and tackle the day. Emphasis on the ‘jump’. Without pain.

But these are pointless thoughts, and I push them away. For 36 years I was one of those people. I never appreciated the sheer joy of free movement, of not being in pain. I also know that many people get RA much younger than me. I remind myself that I am still luckier than many people.

Time to wake the kids and get them breakfast. Get them to school. Have a shower.

Ahhhh shower.

I take a long shower every morning. It is the single most important part of my morning. It washes away the last of the stiffness, and eases much of the pain. But not all. And when the shower stops, so does the relief.

I have tried many morning routines and this one works the best. It takes a full two hours for me to feel human. And to look human. My eyes are much less inflamed now. I still look like the elephant man to me, but I must admit to others I would just look a bit puffy eyed. They would probably think I drank too much last night and am hungover, I suppose. Whatever.

9am. Kids are at school. Yay! My most important task for the day is complete. Now I need to try and work. I am a web developer and I work from home. I’m very lucky to have this arrangement. I am only capable of working about 15 hours per week. About 3 hours per day. Usually broken up into two lots, with a break in between. So essentially it takes me most of the day to get 3 productive hours in that I can bill for. But as I said, I am lucky. Part time work is very hard to find. Understanding employers, even harder.

Again I strap some heat packs to me, and sit down at the computer. The pain has gone down to background noise, and I focus on my work to take my mind off it. Because I am not actually in a ‘flare’ right now – all of this is just ‘normal’ for me – the pain has become mild. Annoying. But it doesn’ t stop me working.

10:30 am. I need to take a break. Walk around. I do some dishes. Dunking my hands in the warm water feels amazingly good.

11am. Back to work for a bit.

12:30pm.  Lunch break!  I should be able to do another hour of work after that.  Or some housework.  I will have to choose one, the other will have to wait.

2pm. I will have to pick up the kids soon. Head for the shops, figure out something for dinner. I’m still feeling pretty good.  When I go outside in the cold my hands start to turn yellow and bloodless.  Then they turn purple. It hurts!  This is Raynauds Disease…another sign of Rheumatoid Arthritis and other autoimmune diseases.  My hands are numb and its hard to grab the steering wheel.  I need to warm them up – why didn’t I put my gloves on???  Oh yeah, because its not actually that cold and I keep forgetting.

3pm. Pick up the kids.  They are happy and excited, and telling me about their day.  We have afternoon tea and do some homework, and again I realise I am way luckier than a lot of people.

4pm.  I am feeling OK.  Starting to stiffen up, but there is a pilates based class on at the gym.  I will go.  It will do me good.   I head down there and warm up on the recumbent bike.  My knees crack and grind as I force the pedals around.  My ankles are giving me trouble too – they don’t want to bend.  The first five minutes of exercise always hurts.  But once I start to warm up, I have learned that the pain decreases.  So it’s worth pushing through.  There is a reward.  A reduction in pain, albeit temporary.  There are all the other benefits of exercise as well – increased muscle strength, improved cardiovascular health…exercise is good for everyone.

It is especially good for people with Rheumatoid arthritis.

Of course there are some days when exercise is completely impossible.  When standing up is hard work, exercise is off the agenda.  That’s when I am in a true flare.  Not just everyday pain. And there are some people with severe rheumatoid arthritis who never feel good enough to even attempt exercise.  So again, I realise I am luckier than some.

The first half of my pilates class is strength based, using my own body weight to build muscle.  The second half is composed of lots of stretching, which is so good for arthritic joints.  Other days I life light weights, or do a light workout on the cardio machines.  The recumbent bike is good for people with lower back pain.  The elliptical trainer is low impact cardio. On my best days, or really determined days, I run on the treadmill.  Or jog, really.  I do whatever I can do on the day.

I leave the gym feeling much better than when I arrived.

6pm. The pain has returned with a vengeance. My ankles, knees, hips, shoulders, elbows, ribs, jaw are all taking turns at feeling the worst. I have to get dinner prepared, then I can painkiller up.

6:15pm. Endone (oxycodone). Ahhhh.

6:45pm. Narcotic pain relief has kicked in to a point. A glass of red will hurry it along.  The dishes will have to wait. The kids and I will watch TV until bedtime now.

9pm. Exhausted. Everything hurts again, the endone has worn off. If I take another, I’ll probably be hungover tomorrow. If I don’t, I probably won’t sleep tonight.

I take another. I don’t want another night like last night.

10pm. Drifting off to sleep.

2am. I am awake because there is pain all over my body.