The truth about living with Rheumatoid Arthritis

Excercise

Rheumatoid Arthritis and going back to yoga/pilates exercises

I went to my yoga/pilates based class for the first time in many months.  I just stopped going. Why? Because I was sick of it. Sick of the pain that I had to go through during each class, sick of giving up my Sunday morning, and just sick of doing a class I didn’t enjoy anymore because ‘I should’ or ‘it’s good for me’.

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Rheumatoid Arthritis and my gym and why it matters so much

It’s funny how the things that can sound like the most minor of minor problems can really knock me around.

Last week I was waiting on a biopsy result, one of my closest friends wasn’t speaking to me and I had no idea why and my mother was PISSED cos I couldn’t attend dinner on her 70th birthday.

But what was I upset about?

My gym.

Yep, that sweaty, dark place where I go to pretend I’m still a functioning human.

My ‘gym’ is actually two gyms. One membership allows me to attend either gym.  I am roughly in the middle of the two locations, each about a 10 minute drive, depending on traffic.

The first gym is beautiful and shiny and new.  It has great equipment, the latest gear, a massive group exercise room, a huge spin class room and every kind of machine you could imagine. Plus enough free weights so you never have to wait.   The whole place is modern and wonderful and  filled with light and energy.

The second gym is grungy and dark. The brickwork is old and ugly.  They have just repainted the ‘feature walls’ but the fact that the building is at least 30 years old is still apparent, and as I lay on my back stretching in a class last week, I marvelled that they painted a feature wall, but didn’t patch the holes in the cornices, nor paint out the gross dark, damp patches and fill the cracks that make you feel like that wall might actually come down on you given a half way decent storm.  It has a small group exercise room that is often cramped. The popular classes are overflowing, and it’s hard to find space.  The other classes are almost empty. There are no windows anywhere and the spin class room is also small, and dark and it’s like a dark little torture cave.  The cardio room is downstairs, round the corner and under the strange ‘too low’ ceiling, that at 5’10” I feel like I’m going to bang my head on.

It feels rabbit warrenish and tight and enclosed and claustrophobic at times.  And there is this one guy. He’s there every afternoon. And I give him the utmost respect, because he is there every single afternoon that I am (and I’m not there every day).  Working hard on the cardio machines.  But he has the worst body odour I have ever smelled. And because the room is small and tight and enclosed, it is overpowering and revolting.

Today when I went down there I remembered exactly why I started doing my afternoon cardio at the other gym.

Now these two gyms, that were owned by one franchise are separating.  All members have to choose one gym, or the other.  We can only be a member of one, for the price that previously bought us both.

Lots of us are pretty pissed off.

But as you’re reading this you are probably thinking it’s a pretty simple decision on which one to choose.

But then there’s the timetable.

The shiny new gym has lunchtime spin classes that I like to attend when I can.  Lots of them. They also have lots of 5pm spin classes.  Between the two, I can do a spin class every day, if I am willing and/or capable.

I used to work out hard at the gym.  I have been reduced to a re-habber.  What I do now, is nothing like the workouts I used to do.

But I love the gym, I love working out and I need to hold onto that aspect of me.  They gym junkie I once was.  And even on a pretty bad day, I can still do a spin class. Just make the wheels go around.

There are days where I can do nothing but lie on the couch. But it takes a lot to stop me. I make it to the gym 3 or 4 days a week now.

So the timetable becomes key. Having two timetables means that I can do what suits me.

Monday: Bad day?  5pm R30 at gym 1.  Good day?  5:30pm Viper class at gym 2.

Tuesday:  Bad day?  9:30am R30 at gym 1.  Good day?  Feel like zen?  Centergy at 4:30 at gym 2.  Good day? Feel like kicking ass?  Vipr at 5pm at gym 1.

Wednesday:  Bad day? 10am OR 12:15pm OR 5pm R30 at gym 1.  Good day?  4:30pm Power class.

And so on it goes. Having two gyms allows me to cater to my needs.

And gym 1 is shiny.  And gym 1 has most of the ‘bad day’ options.  And most of my days are, in fact, bad days. In all honesty, gym 1 has the most options, full stop.

But.

Then there’s the people.

And the stark realisation.

I am alone. Often. You would almost say always.  Except for my children, I don’t see many people.  People don’t often come to visit. They are busy. They have lives.  As they should.

I used to be very social. I used to in fact be quite the party girl.  We used to have ‘gatherings’ often.  The best one was probably when I invited half my son’s entire kindergarten class parents over for a curry night. Because I felt so bad about not including anyone (yep, whole other set of issues there, kids!) so I invited everyone.  I wound up with 60 people at my house and it was amazing.  It was about four months into the year, and after that we were all friends.  That ‘gathering’ became stuff of legend.

I didn’t have rheumatoid arthritis then.  Or rather, I did, but it was mild and I didn’t know it.

But barbeques, parties, pub nights, food, frivolity, wine, beer and song were a huge part of my life. They were a huge part of me. They were a huge part of my marriage.  They were a huge part of why my husband loved me.

When I got sick, I got hit hard. I woke up one morning and I was in so much pain in my entire body that I couldn’t stand up.  Of course I DID stand up. And I kept on going.  Because it took another year to get a diagnosis or any treatment.  I have no idea how I did that.

But that year destroyed my marriage.

First, because I became a different person. A lesser person. Not the person he loved.

And second, because my husband didn’t believe me.  And I could never forgive him for that. For expecting me to clean toilets and iron shirts when my body suddenly imploded around me.

I survived on sheer force of will. And that will survives. The body improved with treatment for a time, but is largely going back to that place again.

Point?

The gym is my social life. My only social life.  In any given week, the only people I might chat to in the real world (not on facebook, not via email, and I hate the fucking phone) are my friends at the gym.

It’s five minutes. It’s nothing important to them. It’s my entire social life.  It’s my entire connection to the ‘real’ world. That five minutes before class, the light and fluffy small talk as the class begins, the banter with the instructor, the eye rolls and gasps as we pretend we wish we were somewhere else.

So on paper gym one is the obvious way to go.

And I’m going with gym two.

Rheumatoid Arthritis and hydrotherapy

Last week I did my first hydrotherapy session.  I have been on the public waiting list for several months…maybe even years.  It’s a very popular service, and there are not many warm water pools in my area.

I have to admit, I wasn’t keen.  I don’t really enjoy swimming, or getting into the water.  When I go to the pool, it’s to play with my kids.  My daughter is a water baby, so I basically go to the pool for her.

But hydrotherapy is an excellent form of exercise for people with rheumatoid arthritis.

What is hydrotherapy?

Hydrotherapy is essentially doing exercises in a deep, warm water pool.  A gym program done in the water, if you will.  An exercise physiologist designs a program of exercises to strengthen your muscles, improve mobility, reduce swelling, increase range of motion and improve your circulation.

Many people with chronic pain conditions would benefit from exercise, but find it’s too painful to work out in a gym.  The water, however, supports your body weight and takes pressure off your joints, and also provides resistance to work against.

The pool I attended is kept at 34 degrees.  The warmth is soothing and it almost feels like a warm bath.  It was far more pleasant than I was expecting. It felt wonderful on my inflamed and painful joints.  Just the feeling of weightlessness alone, for a little while, was worth the trip.

The pool has varying levels, so that you can work in different depths of water.  On entering the pool the water was about waist height, and the other end of the pool was so deep I couldn’t touch the bottom.

Because the water supports your body, I could do exercises in the pool, even though I had several flaring joints.  The water helps with stability and balance, and the exercises can be made harder, and more targeted by using paddles, floats and dumbbells.

Each person’s program is specific to them, and a wide variety of conditions can be improved with hydrotherapy, including inflammatory arthritis, fibromyalgia, post surgery rehabilitation and neurological rehabilitation.

I began my session by just heading down to the deep end of the pool, and hanging off the side rail.  Completely weightless in the water.  It was absolute bliss!  All pressure taken off all my joints.  I would have been happy to spend the whole half hour session just hanging there.  I could almost feel my spine stretching out, my muscles relaxing and my joints loosening.

But we were here to exercise, so I actually had to do stuff.

I walked up and down the pool a few times.  Walking at just below shoulder depth against the resistance of the water was harder than I expected, but not painful.  I had to walk forwards for two laps.  Then rest.  Then walk backwards.  Rest.  Then sideways.

Next I did some arm rotations, as we are focussing on my shoulder.   Then I headed to more shallow water and did some squats.  They had a chair in the pool, and another exercise was to simply sit down and stand back up again.  It sounds so easy, but I could feel my muscles working, even though I am quite strong (for someone with RA).  And it was so much more gentle.

I force myself to do exercises in the gym, because I firmly believe in ‘use it or lose it’.  And it’s a lot harder to get it back once you’ve ‘lost it’, so I work hard to maintain the function I have.

But it is much less painful to do this work in the pool.

I did a few more exercises, bicep curls with floating barbells, forward shoulder presses, I can’t remember what else.  The session went very quickly.

The hardest part was getting out, and feeling gravity attack my body again!

I didn’t experience any soreness either later that day, or even the next day.  I am used to exercise however, and relatively fit (for someone with RA).  In fact the day after my hydrotherapy session was one of those amazing, and very rare, low pain days.  Co-incidence?  Probably.  But it sure was a bonus.

If you want to start exercising, I highly recommend hydrotherapy.  It is expensive if you are doing it privately, but I believe the benefits would be well worth it.  Exercising means stronger muscles and tendons, a stronger heart and a more functional body for longer.  And exercising in the pool reduces the pain to very low levels.

Hydrotherapy means that almost anyone can exercise, I just wish it were more widely available.  If you have the opportunity, I highly recommend giving it a try.  Even if you’re like me, and think you hate the water.

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 how to keep chronic illness from taking control

controlI 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.