Living with Rheumatoid Arthritis – You’re lucky because you love exercise

“You’re lucky because”

“It’s easier for you, because”

Just like any apology that contains the word “but” is worthless, telling someone they are “lucky because xyz…” is an excuse for your own shortcomings.

I’ve had many people tell me I’m “lucky” because I love exercise, therefore I can push through the pain of exercising, because I love it so much.

Um, no I don’t. 

I love what exercise does for me. It boosts my mood, reduces depression and anxiety, increases muscle strength, and tone.  It improves co-ordination, proprioception, and balance.

Nowhere in there did I say it’s fun.

Usually, it’s not fun. Usually, I don’t enjoy the exercise itself.

What feels great is that time AFTER the exercise. AFTER the gym workout, or the class or the jog or the hike.  It’s a feeling of euphoria if I worked hard enough.  At the least it’s a feeling of satisfaction.

When you tell me that I am ‘lucky’ you are diminishing me.  My hard work. My determination.  My motivation to do the best I can for myself, my body, my health.  You are dismissing ALL of that to make yourself feel better and reducing me to ‘lucky’.

And I am most certainly NOT lucky! 

I am very unlucky.  The things that have happened to me are insanely unlucky. The things I’ve endured, the situations I’ve survived.  And I am sick. Very sick. Every single day of my life, I feel sick. I never feel good. I am always in pain. That pain is severe for at least part of every day.

I am NOT lucky. And I am sick of people excusing their own shortcomings by telling me I’m lucky. 

You don’t like exercise?  Fine. Don’t exercise.  But don’t pretend you can’t. Most likely, you can.  It will be hard. You’ll have to take it slow. You will experience more pain in the beginning. Heck, you might always experience pain from exercising.  Exercise costs pain but it gives back in a myriad of other ways.  And the increased pain that exercise cases is temporary. EVERYONE experiences it, healthy people, AND sick people. It does NOT represent a disease flare.  It does not represent damage to your body or worsening of your disease.

Its just muscle pain, from using muscles you haven’t used in a while. It will happen in the beginning, and it WILL go away.  If you DO experience severe pain the day or two after exercising, its NOT a reason to stop (as many people like to say). It IS a reason to do less in your next session – lower the intensity and/or duration of your exercise session.  You need to pace yourself and increase your exercise gradually. And gradually, you will get stronger and fitter and start to feel better.

It takes time. It takes work. And in the beginning, you might feel worse.

But.

Everyone who has inflammatory arthritis accepts that the medications we take will take time to take effect, sometimes weeks, sometimes many months. We know that. We accept that.  We even understand that in the beginning the side effects might make us feel worse for a while.  We know and accept this too.

Exercise is the same!  We have to see exercise the same way as our medications. We have to be patient for the benefits to start showing and patient for the side effects to wane.

There are huge benefits to exercising.  It’s been said over and over that if they could make a pill that does everything that exercise does, the whole world would be taking that pill.

If you don’t want to exercise, that’s fine, but admit you don’t want to exercise.  Its your choice and it’s a fair choice.  Arthritis can be terribly painful. Far more painful than the average health person has ever contemplated or can understand.  I’m not blaming anyone for not exercising, because its not easy. Its bloody hard.  But that’s exactly why I will NOT accept people telling me I’m lucky.  Its not good luck. Its hard work.

Exercising with a painful disease IS possible, but its not easy. It might be the hardest thing you’ve ever done, in the beginning.  It takes planning and knowledge.  And the belief that there is always something you can do.  When I was partially paralysed, I stretched.  That was all I could do. Lying in bed, stretching my toes.  That’s where I started from.

As I got stronger, I increased my range of motion and I increased the number of body parts I moved. I bicep curled nothing. No weight.  I could’nt squat, but I held onto the bench and did slight knee bends. Slowly, very slowly, over time, I made these bends deeper.  Later, when I was much stronger, I added light weight.  I did bodyweight exercises when I had control of my whole body back.  My left leg is always weaker, it will always be weaker, I work around that.  I also do extra work with my left leg BECAUSE its weaker. I don’t favour it, or baby it, it needs to do more work because it’s been damaged more.

I worked my way back and it was very, very slow and it was very, very painful. I am proud of how hard I worked and what I achieved.

I can walk now, but not very far.  I do far less exercise than I used to do, before my spinal injury. But I do what I can. I do use a wheelchair most of the time now.  But I also do exercise routines to keep my body as strong as I can.  It’s a discipline. Its like I have to do the dishes every day.  Or load and unload the dishwasher. It’s a basic thing that I have to do every single day. 

It’s a discipline. It’s a mindset. Its NOT luck.

If I ever win lotto, its OK for you to tell me I’m lucky. Even then, I’d think it was my life balancing back to centre, after decades of loss, pain and illness.  But under those circumstances, I will accept that I am lucky. Until then, don’t you dare try to take the credit for my hard work away from me with a simple “well, you’re lucky”.

People have also used the fact that I exercise as evidence that I’m not ‘really’ sick. That I am not ‘really’ in that much pain. That my arthritis is not so severe, that I can’t have peripheral neuropathy, because if it was ‘that bad’ I would NOT be able to exercise.

One word – opioids.

I use opioid pain-relieving medications to reduce my pain enough so that I can exercise. My usual routine is to take an immediate release opioid capsule one hour before I intend on exercising.  That means that I will be at peak pain relief during my exercise session.

Does that mean I am not in pain? Nope. Opioids reduce pain they do not eliminate it.

Does that mean I will exercise through severe pain and do damage to myself?  Nope. Because when pain is severe, an opioid will not reduce the pain enough for me to exercise.  I skip my exercise on days where pain is too severe. I generally aim to do something every day, but the truth is I average four sessions per week. The other days my pain is too severe.  I might do some stretches, or range of motion work.  But there are most definitely days when I can’t exercise. The thing is, I don’t allow those days to dictate my life.  In my head, I am a fit and active person.  I keep that image in my head, even when the evidence says otherwise.  Its how I keep getting back up and keep getting back to work.

Does exercise mean I am doing damage to my body?  Nope. Exercise has been shown to improve arthritis, both osteoarthritis and inflammatory arthritis.  Exercise increases the viscosity of synovial fluid and improves the lubrication and the nutrition the joints receive.   Exercise is therapy.  Exercise is good for your joints. Wait, with one caveat. Appropriate exercise. There are all kinds of options – walking, swimming, playing tennis, riding a bike or exercise bike, doing a gym class. Or just climbing the stairs instead of taking the elevator. Every bit counts. Every bit helps.

If you don’t want to exercise, That’s fine. If you don’t like exercise that’s fine.  I don’t judge anyone on their choices, because I don’t know everything that goes into those choices.  But don’t try dismiss, diminish and demean me because I DO exercise.

If you want to exercise, but don’t know how, go see a physiotherapist, exercise physiologist or even personal trainer with rehab training qualifications.   In Australia, you can get a chronic disease plan which will allow five sessions to see a physiotherapist or exercise physiologist at a subsidised rate.  Either of these professionals can help you get started with an exercise regime that is safe for you.  Yes, its still expensive, but what price your health?

If you realise that its your mindset that’s preventing you from moving forward, or moving at all, find a health coach who specialises in chronic illness and behavioural change.  They will offer support and strategies to change your way of thinking about illness, pain and exercise. 

Because most of the time ‘can’t’ is a mindset.  It’s a belief. And the mind-body people are right, that your mind leads the body. That most times the mind will give up way before the body will. And that untrue beliefs often limit us in our lives.

But again, if you don’t want to exercise. That’s OK too. It’s absolutely your choice. Some people truly hate exercise and can’t find anything that they remotely enjoy.  It is utter torture for them.  And I don’t advocate for putting yourself thought something that you hate that much.  Its NOT going to help your health, if that’s the case.

But don’t disparage others.  And don’t make the assumption or the assertion that the person with inflammatory arthritis who manages to walk 2km, and even jog a little, has less severe disease. Or that they have less pain. Or that they are ‘lucky’.

Note: My idea of exercise is walking my dogs for 15-20 minutes.  I sometimes do treadmill work, short sessions.  I want to start doing weights again, but I haven t found the time or the motivation yet. I am working on it.  What I do is very difficult, but its appropriate for me.  It keeps me fitter and stronger and healthier than I would be if I didn‘t do it.  In my mind I am still super fit and go to the gym for two houirs daily. Thanks to COVID I haven’t seen the inside of a gym in many years.  Its not a safe space for me anymore.  It’s a place where disease spreads very readily. So I workout at home, to the best of my ability. 

Back when I was fit, people constantly told me I couldn’t be that sick if I could exercise the way I did.  And I resented it. And even now, though my exercise level is much less, people are still telling me that I can’t be that sick.  This idea that if you are really, really sick and in lots of pain that you should lie in bed all day is flawed. It’s not the right thing to do and it’s not the right thing to expect.  People who DO lie in bed all day disable themselves far more than theho don’t. They experience muscle wasting, and loss of strength. They become frail and helpless.  That does NOT have to happen. At the least, it can be delayed. Exercise, some form of movement, prevents deconditioning and disability.   And it doesn’t take much, that’s the thing. I don’t do much anymore. But it is enough.