The truth about living with Rheumatoid Arthritis

depression

Rheumatoid Arthritis and depression and breaking the rules sometimes

anxietyOk, so depression and pain and chronic conditions. I’ve done this to death, right? No, wrong. I haven’t spoken much about it at all.  I usually I just ride it out, because I don’t usually stay down for long.  I don’t let myself.

Right now I don’t really want to get up.  I know what I have to do. It’s a process.  I have done it before.  It works for me.

I just don’t want to do it.  I’m tired of being strong. I’m tired of doing it all.  I’m just tired.

I’m doing the bare essentials –taking care of my kids.  I’m not really taking care of myself.  I can’t eat much. I have no appetite and nothing appeals. I am hungry, but as soon as the food is in front of me, I just feel nauseous.  I can, however, drink.  And take my pain killers.  And let the lines blur.

I know I shouldn’t be doing this. I should pick myself up. I should go to the gym. I should go get some fresh food and cook some healthy meals.  I should pour the rest of the red wine away, and not buy any more.  I should only take oxycodone when I absolutely need it, not because I just don’t want to deal with the pain today and I want to be dumbed down. I should make some plans with friends and get out of the house, even if I don’t want to go.  I should get out of my track pants.  I should decide on a direction and find the course that will get me there.  And then I should enrol. I should keep my brain engaged and focussed and forward thinking.  No looking back.

This is how I get back on my feet. I don’t do all these things at once. I do one each day.  Maybe even two.  And before long I am OK.  I’m back on the treadmill, literally and figuratively.  I tell myself I’m strong and I pat myself on the back and give myself heaps of credit, because few people know how hard all of this stuff is for me, so therefore no one else is going to do it.  But I know, and I tell myself I am awesome. And that’s enough for me. Throughout this process the physical pain still remains.  But as I’ve written before, you can be in pain and be happy.

But I’m tired.  I just don’t want to do the work.  I want to stay down here a while.  I want someone else to do it for me.

My depressive bouts don’t happen that often.  I’m generally a ridiculous optimist.  But sometimes enough problems hit at once, and I do fall into periods of depression.  But it’s not clinical depression.

Clinical depression, as it has been explained to me, is a medical condition all of its own.  It has no definable cause.  It is a chemical imbalance in the brain that renders the person unable to feel joy and happiness.  Studies have linked these feelings to low serotonin levels in the brain, and therefore serotonin reuptake inhibitors can increase serotonin levels and improve mood.  Other medications work on dopamine receptors. I’m far from an expert, but I have taken a few anti-depressants of various classes.  I didn’t believe I was depressed, but sometimes doctors bully you into trying their drugs.  They say things like ‘If you don’t WANT to get well…’ and make it clear that if you won’t try the medication, don’t bother complaining to them.  You start to question yourself…because if you are depressed, you might not know it, right?  So I have tried several. They don’t work for me.

I think this is because there is another type of depression.  A type of depression where there are clear causes for depression.  When any thinking, feeling person looks at the circumstances, and they can understand why you might be depressed. Why you might be feeling beaten.  Why you might be down.  It’s possible to see a clear cause and effect.

Maybe this isn’t really depression. Maybe it’s unhappiness.  But knowing and understanding the reasons for your unhappiness is one thing.  Changing them is quite another.

My situation looks bleak.  43. Painful, progressive disease.  No employment prospects.  No financial future.  Two kids to care for, one of whom has special needs.  Alone.

I can’t change any of that. Ok, maybe I could change the ‘alone’ part.   I am tired of being alone.  I miss having someone to love. Someone to share things with.  The important things and the trivial things.  But it’s hard to meet people from the couch. And you can’t decide to love someone.  And you can’t decide to stop to loving someone. It’s out of your control.  And loving someone would ultimately mean depending on them.  Uh-uh. No.

So normally at this point I go into damage control.  I follow my rules and I get off my butt and start putting myself back together.

I am super woman. I get back up and do it fast before the depression takes hold. I do all the right things. I tackle it like I tackle everything. Head on. And for me, it works.

But I am viewing it differently this time. I don’t need to be superwoman. My body, or my mind, or both, are telling me to rest.  And for once, I am going to listen.  I am giving myself time.  I am taking it easy on myself.  I don’t need medication to alter my mood, or suppress my feelings. I am not going to override my feelings and tell myself I shouldn’t care.  My feelings are valid.  I’m allowed to be angry. I’m allowed to be sad. It’s understandable that I am tired, and lonely. I thought it was stronger to forgive, not dwell, and move on.  This time I don’t care about what the ‘strong’ thing is.  I don’t need to be strong all the time.  I don’t have to forgive people who have wronged me. I don’t have to work at getting along with them.  I don’t have to spend time with anyone if I don’t want to.  There are a few people who can make me smile just by walking in the room.  Those are the only people I want to be around right now.

I have potentially brilliant or potentially devastating news due next week.  It’s most likely going to be the latter.  I’m not going to paint my smile on and pretend all is well, as I usually do. I’m going to lay low until I feel better.

And I will feel better.  That’s the advantage of being 43 and having been through some crappy experiences. I know exactly who I am.  I know what helps and I know what hurts.  And I know that I will be happy again.  When I am ready.

Rheumatoid arthritis and failing humira

humiraNormally I would be injecting Humira tonight.  But no more.  I have done my 12 weeks, and have felt no benefit for at least the last six of those.  And the side effects, particularly the depression and anxiety, are not worth it.

In truth, I can’t believe I managed to stick it out this long.  I see rheumy next week, and I don’t believe she will be pleased,  because we are almost out of options.  But I do believe she will understand.  She is a caring doctor.

To everyone experiencing depression, my thoughts are with you.

It’s hard to get up (or not) every day and fight RA, lupus, MCTD, PsA, Ank Spond, IBD…the myriad of autoimmune diseases we deal with.

Depression and/or anxiety make fighting impossible.  Depression will take away your motivation. It will take about your will.  It will tell you that you need to stay here, in this spot and not move.  Make a nest and stay in it.  Protect yourself.  Don’t risk more pain.

And some days that’s all very true, and exactly what you need to do. But depression tells you to do that every day.  And pretty soon you have no life left.

Anxiety will tell you to do the same things, but for different reasons.  Anxiety tells you that the sky will fall if you leave your safe place.  Something terrible will happen. What?  You don’t know. But it WILL happen. So you have to keep yourself safe.  And keep everyone safe that you care about.  You can’t go anywhere or do anything.

And again, you have no life.  No fight.

I experienced depression in my early 20s. There were reasons.  I worked through them, with help. And I recovered.  I learned a lot of techniques to deal with depression. And they have served me well through stressful periods in my life since then.  No one is ‘depression proof’ but there are mind sets and habits that are protective.

I do not pretend to understand how or why, but some medications bring out the depressive tendencies of my nature.  I believe it is part of me, because I don’t believe that medications can ‘create’ feelings.  But they can amplify them.  The things that I feel when I am depressed or anxious on a medication are things that I feel when I am not on these medications. It’s just that I manage these feelings. I don’t let them take control. I can keep them in perspective.

On some medications, there is no perspective.  There is no control.  There is only a slow slide into emotional turmoil that is difficult to understand, and to arrest.  Adding depression to chronic pain and disability is not a good thing.

I am lucky, because I can get rid of the depression by stopping the medication.  Methotrexate is the worst, but Humira is a close second.   The two drugs have nothing in common.  Completely different classes of medications.  Methotrexate is a DMARD, low dose chemotherapy.  Humira is a TNF blocker, a biological DMARD.  And Enbrel, a TNF blocker like Humira, did not cause depression nor any other emotional side effects.

So it’s impossible to predict.  I just have to take that chance when I start a new medication.  And when  a medication is a monthly dose, if the side effects are bad, you know they are going to last for at least a month.

Methotrexate takes a week for the worst to be over.  In two weeks I feel like myself again.

Humira takes a week to feel improvement. After two weeks I can feel myself returning.  Another week I hope, and I will feel normal again.

The next drug on the agenda is Actemra.  It is a monthly infusion.

I am not prepared to risk it right now.  I will see rheumy next Tuesday – the 11th of February.   I am going to tell her that I can no longer tolerate Humira.  And that I need a break from medication. I need a wash out period.  I need to feel like myself again for a while.  I need to regroup. I need to regather myself and get stronger.

Because I am fighting a tough battle, and I need every ounce of my emotional strength to get through the levels of pain I am experiencing every day now.  I need my mind, my emotions, within my control again.

I hope she understands.  I believe she will.  Inflammatory arthritis is breaking down my body.  I cannot allow the treatments to break down my mind.  As the saying goes, where your mind goes, the body follows.

 

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 the paradox of exercise

Young beautiful woman in the gymExercise hurts.

Exercise hurts normal people.  Exercise hurts people with inflammatory arthritis even more.

But exercise helps.  It really does.

But first it hurts.

Over the last few months I have been able to exercise less and less.  And depression has reared its ugly head…partly as a side effect of medication, partly as a side effect of rheumatoid arthritis and mixed connective tissue disease and partly as a side effect of life!

Depression is most certainly worse when I can’t exercise.  The irony being that it’s so much harder to motivate yourself when you are depressed.  Especially when you are also dealing with constant physical pain.  Each feeds on the other…it’s a vicious circle.

So I started doing less and less time in the gym.  And when I did get there, I did shorter workouts. Easier workouts.   Mostly because it hurts so damn much!  Not like normal people hurt in the gym…much, much more.

But it also ‘hurts’ that I can do less than I used to.  Lift less weight.  Perform fewer exercises. Make adaptations.   Always having to leave a class half way through really has a way of getting you down.

My instructors are wonderful. They know me, and they understand.  They are supportive in every way.

But I wasn’t supportive of myself.  I wasn’t accepting of my body’s limits.  I let it get me down.

So I decided to take a break and see what would happen.

As you would expect, I got worse.

And I lost my only real social outlet.  I lost touch with my gym buddies.

And the depression got worse.

Solution?  Get back to the gym.  In any capacity that I can.  And be satisfied.  No comparing myself to other people.  No comparing myself to what I was doing this time last year.  Just take every day at a time.  And be proud of whatever I achieve.

Sounds easy, right?

It’s not.

It’s extremely hard.  Not only does it get me down emotionally, it hurts physically and it’s much easier to just give up and tell myself I can’t exercise anymore.  It’s so tempting to ignore all the benefits of exercise (cardiovascular health, keep joints mobile, mood elevator) and just give in.

And then my little girl asked me to get fit with her.  She’s 11, and she wanted to go walking and running, because they have been learning about the importance of fitness at school.

I wanted to tell her I couldn’t do that anymore.  But the words wouldn’t come.  I remembered my own words…”there is always something you can do, on all but the very worst days”

So I dosed up on my ms contin and oxycodone and we started with a 500 metre jog.  I’m not sure it was really a jog. It was more a shuffle. I’m not honestly sure if both feet were ever off the ground at the same time.  And it was all downhill.

The second day we did 1km.  Still all downhill.

The third day we did 1100metres.

And then I had one of those knockdown flare days where I could do nothing but lie down.

But two days later, we did another 1100meters.  And we stopped at the playground on the way back.  And we played.

And you know what?  It hurt! It really hurt a lot!  Trying to jog, however slowly on these joints is not fun.  But afterwards?

I felt better.

My mobility is improving again.

My mood is improving again.

Years ago I used to do 5km as a ‘short run’, but that no longer matters.  I did 1100 metres!  With my little girl and my son in tow.  (Actually they were ahead of me…LOL). We did it together, and I’m so proud of them.  And I could see they were proud of me too.  We have something we can do together, whenever I can.  They feel like they are helping me, and I feel like I am helping them.  And that is what matters the most.

The most important gift that mixed connective tissue disease has given me is time with my children.  I was a career woman before.  I miss my career very much, but my kids and I are close.  Some people would kill for the opportunity to spend that much time with their kids.  I have been given this time, and although it has come at a very high price, I am still grateful for it.

And I am back on track. Yesterday I went back to the gym, and did a 30 minute spin class.  I bought myself a heart rate monitor, so I can keep track of my exertion levels.  I am not as strong as I used to be. I can feel my muscles fatiguing very quickly.  And I can’t get my heart rate up very high…I just don’t have the strength or the power, nor the stamina.  My muscles actually feel like they are ‘melting down’ sometimes.  I don’t know if this is a new symptom or a side effect of Arava.  I seem to remember it caused muscle weakness last time I took it.  But I can work up a sweat and put in a decent workout.  And I’m not competing anymore.  Not even with myself.

Each day is a new day.  Each day I have different capabilities.  Today I think all I will be capable of is a few stretches.  And that is enough.  I’m being grateful for what I can do.  And every little bit helps.

And the depression is receding.

Rheumatoid Arthritis and depression

DepressionDealing with depression is almost definitely part of the chronic illness experience.  With a disease like Rheumatoid Arthritis, you can go from someone who runs 5km each day, has a full time job, raises children and keeps a house neat and tidy (well mostly) to someone who can’t take two steps without pain.  Someone who can’t make a fist.  Can’t hold on to a cup of coffee.  Can’t hug someone without it hurting.

It’s a shock, to say the least.

Then the process of trying to find a medication that relieves the pain and inflammation begins.  For some, that process is endless.  For some, no medications help much.  For some, they have to learn to live with unrelenting pain.

This quite naturally brings with it a fair amount of depression.  I don’t think that’s hard to understand…even though most people seem to find Rheumatoid Arthritis hard to understand.

This complete lack of understanding, lack of caring, lack of empathy and lack of support also contributes to the isolation and depression of suffering a chronic illness, or chronic pain.  Some people leave you.  Friends, lovers, husbands, wives.

Most people are on multiple medications, often including an anti-depressant.

I have tried anti-depressant medications – many of them!  They made me feel worse…much worse.  I gave them a fair shot, but I they weren’t of help to me.

So what do I do to keep depression at bay?

I have rules.

  1.  Smile!  Make it a habit.  Studies have shown that just by smiling, the body physically produces endorphins as a result.  And endorphins are the feel good chemicals in the brain.  So make smiling a habit.  You’ll also find that people are drawn to people who smile, so as a result you’ll be less isolated.
  2.  Don’t isolate yourself.  I know you don’t want to be around people.  You may not want to be alone either, but it does seem a hell of a lot easier sometimes .  You don’t want to bring other people down. You know they won’t understand what you’re feeling. You can’t relate to their conversation…it’s all too hard and bright and senseless.But don’t isolate yourself.  Once you lose touch with people, it’s so very hard to re-connect.  Being alone becomes a habit – and connecting with people becomes a skill you have to relearn.  Stay in touch with people…just a few people.  No matter what.
  3. Only one pity party day allowed.  When a bout of depression hits, if it’s really bad, you are allowed to stay in bed, or on the couch and watch TV and do absolutely nothing, for ONE day.  Only one.  Not the next day as well.  Definitely not the day after that.  Your day is a mental health day and it is for you to rest, and recover.  And  gather strength, because you have to face your life the next day.  Good chance you’ll be feeling a bit better, but even if you  don’t, you get up.  You get dressed.  You go. To work, to school or wherever. But you go.
  4. Baby steps.  You didn’t fall into a big heap overnight…it took time.  And lots of factors came into play.  When everything seems overwhelming, just choose one thing to tackle.  I have a ‘to do’ list that’s about a mile long.  But today I am going to do my tax return.  And that will be enough.  Tomorrow I’ll tackle something else.  I’m not going to freak out about how long it’s going to take me to get through everything at that rate.  I’m just going to set myself the task of one thing.  And slowly you will find you are able to tackle more things…tackle one thing and the other things will follow.  Even on your worst days, achieve ONE thing.    That way you won’t then put yourself down for not doing anything…for wasting a whole day.  You achieved something.  Even if only one thing, it counts.
  5. Give yourself credit.  When you have achieved something, even something small, take the time to pat yourself on the back.  You COULD have sat on your butt and felt sorry for yourself.  But you didn’t.  You went for a 20 minute walk around your suburb.  It was hard to get yourself out there, so be proud of yourself!  You took a step forward, you helped yourself, and congratulate yourself for it.  DON’T wait for someone else to congratulate you.  It’s not about what they think.  In fact, they won’t even notice, because they don’t understand how hard that was for you to do.  Give yourself credit. You have to find that in yourself.
  6. Realise that you have depression for life.  It’s a tendency you have.  Sometimes when people have been broken, they don’t quite go back together the same way again.  There’s a hole, and it becomes gaping wide when depression hits.  But it’s always there.  Sometimes you’re managing it really well, and it’s not even noticeable.  Sometimes not so well.  .  If things get too much, you might fall down again.  So never forget these steps.  Never let yourself fall too far.  If you feel yourself start to fall, get help!  Talk to someone.  Never forget how far bottom is, and realise the further you fall, the harder it is, and the longer it takes to get back up.  But remember you WILL always get back up.  And the only one who can do it is you.
  7. Exercise!  I don’t care if you hate it.  You will love it when you realise how much better it makes you feel.  You need to find something you don’t completely hate…luckily there are a million options.  Work out at the gym, do a class, go for a ride on your bike, go for a run, go for a brisk walk, swim.  You have to get your heart rate up, and you have to sweat.  That’s the only way you’ll get the endorphins going.  After about 15 mins, the depression will be background noise, and the feeling will last a few hours.  So do a bit every day!  Admittedly this one is doubly hard with a painful, chronic illness. There are days when you can’t exercise.  You just can’t.  But on the better days, start small. Increase slowly.  Improve your strength and endurance slowly.  Just walk.  Stretch.  It doesn’t take much to make a difference.
  8. Diet.  Fuel your body properly.  Don’t cut carbs – it’s been shown to lower serotonin levels in your brain.  You don’t need that!  Don’t starve yourself.  You may not be hungry, but eat something nutritious…fruit is fairly inoffensive.  A sandwich.  Some soup.  You will feel worse if you eat nothing.  Find something you can keep down.  On the other hand, some people become ravenous and eat everything in sight.  Try to curb that. You will only beat yourself up for it afterwards.  Keep healthy foods around you, so they are the only option.
  9. Medication.  Anti-depressant medication can make the world of difference.  It takes time to work, and it can interfere with other medications.  So go see your GP and talk about options.  As I said, I’ve gone down this route, and it didn’t work for me. But I tried.
  10. See a psychologist.  One who specialises in depression and chronic illnesses.  I see my psychologist once each month.  I vent. I complain.  I talk about my illness, my pain, my medications, my side effects. The crappy way people treat me, and my fears for the future.  I get them out of my head. And it makes me feel better to get it out.

 

These are the things I am doing to keep depression at bay.  Some days are better than others.  Some medications definitely bring out depression in me.  Methotrexate certainly had a side effect of severe depression.  Humira is causing depression and anxiety.  But humira also appears to be helping my pain.  So I will persevere and try to keep working within my ‘rules’ and hope that the depression improves and the side effects wane.

I’d love to hear how you deal with depression….what helps you?