What does someone with severe Rheumatoid Arthritis do all day?

woman-wake-upFrom time to time people have expectations of me that are totally unrealistic.

Usually it’s from a healthy friend or acquaintance, who has no idea of the limitations that rheumatoid arthritis puts on my life.  They see me for a few minutes looking fine, and well, you know the drill.

Sometimes people even ask me what the heck I do all day.

The truth is I only have a few functional hours each day, most days.  Those ‘good’ hours are still pain filled.  Sometimes the pain is mild.  Mostly it’s moderate.  Some days the pain is severe and I have no functional hours at all.

But, depending on what I am doing, I have several hours at my disposal.  I need to plan carefully.  If I need to go out, I will need to rest afterwards and it will probably be the only thing I can do that day.  If I am doing things around the house, I need to build in rest and recovery periods.  Do dishes. Rest. Fold washing. Rest.  Make lunch.  Rest…Rinse and repeat ad nauseum.

What I want for people to understand is that my ‘day’ is not the same as their day.  They have a full 24 hour day, minus 8 hours for sleep.  So 16 hours. Take out 8 for work and you still have 8 hours to enjoy.  You can do whatever you like with those hours.

I have the same 24 hours, but the hours don’t unfold the same way.  I don’t usually get to sleep 8 hours.  But I do generally spend up to ten or eleven hours a day in bed.  Most of that time is spent lying on a heated blanket.  I sleep 4-6 hours a night.  I get up and wander around the house in the middle of the night sometimes.  And then I go back to bed and try again.  When it’s bad I take another dose of oxycodone.  I have learnt that waking up with an oxycodone hangover is better than having not slept at all. My body physically needs that rest.  So I stay on my pain meds, round the clock. Slow release and immediate release for breakthrough.

And I function OK. But the pain meds don’t give me a ‘normal’ life. Pain meds add to the fatigue and brain fog.  They cause nausea and dizziness.  They don’t take all the pain away, but they take the edge off.  They allow me to perform a task, or attend an event.

I have to do all the normal things every week that a healthy person has to do.  But I don’t have the same amount of energy with which to do them.  And I don’t have full use of my  hands, and usually several other joints are complaining as well.  So I have to plan very carefully.  And even with the best laid plans, I know that at least two days a week, the pain will be so bad that I can’t do much of anything at all.  So I have to plan for that as well. Except I don’t know which days those will be…just that they will most likely happen.

I take other medications as well.  Disease modifying medications that are technically chemotherapy, and some that are even scarier (biologicals).  The day after I take these medications I have increased fatigue and nausea.  Severe rheumatoid arthritis is NOT treated with ibuprofen.

And then there are all my medical appointments.  I average one or two a week.  Some weeks I have three or four appointments.  That’s a lot of time in waiting rooms.  Not to mention travelling.

Currently I am seeing my psychologist regularly, I see my GP once every two or three weeks.  My rheumatologist every 8 weeks.  I am doing a weekly hydrotherapy session with an exercise physiologist and I have one session with her in the gym every week as well.

After each of these appointments, I need to rest.  My appointments to improve my disease control are wearing me out! Irony…

I have two children. One has special needs.  While I am lucky my children are older (12 and 13) they still need care and attention.  I am aware that they miss out on a great deal because of my disease.  But I am determined that they not be expected to do more around the house than any other typical 12 or 13 year old.  They are entitled to a childhood.  I care for them, not the other way around.

Oh and one more thing.  I am dealing with this nasty little disease called RA (and all my other diagnoses) on my own.

On. My. Own.

I have no partner to help me.  No one to come home when I need help.  No one to cook for the kids when I can’t.  No one to pick up a few essentials from the shops . No one to vacuum the filthy floors.  No one to clean the gross toilet.  No one to do the dishes, or even unpack the dish washer.  No one to mow the lawns or keep the weeds down.

No one to give me a hug.  No one to hold me at night and tell me we’ll get through this together.

So my time is precious.  Very precious.

Which brings me back to the original thought for this post.

One of my hours is not equal to one of your hours, my healthy friend.  When you are asking for an hour of my time, you are asking for a lot more than an hour of your time.  You are possibly asking for the only good hour I have that day. 

And after that hour is over, I then need to recover from that hour. So that’s probably another hour. Gone.

Being friends with me is not an equal equation.  I am very sorry for that, and I wish it wasn’t so.  Because I know I cannot return favours, I often don’t ask for help.  I just find a way to get things done…or they go undone.

I am not reliable.  I cannot car pool.  I cannot promise I can pick up your kids from school on a given day.  I cannot promise I can look after them.  I cannot promise that I can make it to your Tupperware party.  I cannot promise that I will make a dish for your pot luck dinner.  Or that I will show up at all.

I do feel terribly guilty about this.  But it is outside of my control.  I am doing the best I can.  And my first priority is always going to be my children.  It took me a long time to realise that it’s OK to put myself first.  That in fact it is essential that I put my health first.  I am not being selfish.

And that people who care about me, will understand this.   That there are people who still want to spend time with me, even though it’s not an equal playing field.

Most importantly I realised that there is a huge difference between people who like me for who I am, and those that like me for what I can do for them.  And that the people who were in my life because I did things for them, are now long gone.

And I am better off without them.

3 Comments

  1. Avatar of Cathey Olds Cathey Olds says:

    Best description of “A Day in the Life Of”…I’ve ever read. Yes, that’s my day too. Sometimes the days like this are great! Other days are awful. Not just the RA but the depression that goes with the disease. Even my best RA days are tinged with the sadness of knowing what my former life was like. I’ve had RA for 20 years but was able to work until two years ago. I didn’t realize how much I would miss working. I was in education for 25 years. First as a teacher, then as a school counselor, then as a private therapist and artist. As my ability to physically do things declined, I changed my jobs to be more mentally challenging rather than physically demanding. My husband has encouraged me to retire for several years. Finally, I did in 2012. I think I slept through the first year. It felt wonderful but soon I began feeling…unnecessary, boring and useless. What does a person who lays around all day talk about? If I could have done things differently, I wish I’d kept working longer. I miss the interaction with other people. I miss working with children and I miss being creative. I miss being relevant. But mostly I miss being needed. RA steals your soul, right along with your body but you’re so focused on what’s happening physically, you forget that you are more than a body. Sometimes your soul hurts more than your joints…and that kind of pain is the kind that kills. When my soul hurts more than my hands and feet, those are the times that life seems pointless. I’m glad someone has so eloquently described how someone with RA spends their physical day. It validates my experience and I feel less guilty about laying down 22 out of 24 hours. I just wish someone could express what many of us feel emotionally. Feeling that not being here would be easier than being here is painful, too. And that’s the kind of pain that oxycodone doesn’t ease, unless permanently….RA sucks in so many ways. It’s an extremely slow death that replaces any semblance of the life you used to have. A cure cant come soon enough.
    Thank you for your extremely accurate description of my last 24 hours, and probably the next 24 also. You did an awesome job.

  2. I have gout arty in all my joints how do I spend 24hrs well I try n get up not dressed that comes after having a rest with coffee n take pain killers I have to sit or try n put feet up for an hour or so till tabs kick in then sorely try n stand up hobble back to bedroom n get dressed it seems to take 4ever cos my hands hurt so much.then its hobble back to lounge n rest again open door n let my yorkies out put heater on to keep warm let dogs back in put coat hat gloves on get on my scooter n ride to cafe in town (skeggy) where I have a poached egg on toast not much but even trying to do that at home hurts so its the least line of resistance.waitress will cut it up for me if she sees me struggling to hold knife with misshapen fingers n thumb…then after hour in cafe its back on scooter n off to shop where I get help to put groceries in my frontbasket then checkout where she puts my card in machine n puts my pin number in for me fingers dont like pushing buttons…then its to market for coffee n another rest.then back home where I struggle to get shopping in flop down on couch n rest again feed my furbabies n have something out microwave sit back diwn take tab n fall asleep wake up n stand up with some effort I count to 3 at 103 ime still sat n saying this time…try n wash up but dont dry can I vaccuum I try but no hands hurt bit too much today so its coffee n rest again oh well watch tv soon be time for bed get undressed at 6pm so ime ready to just fall onto ged just lie on top cos covers too heavy on my legs put elec blanket over me on low to keep my joints warm..try n sleep but need to get up 3/4 times during night for bathroom finally fall asleep wake up n think my oh my I get to go through this all again today…

  3. Oh my… Your life almost the same as mine. I’m so thankful my girls are in their 20′s, but i live in a handicapped apt myself with aid service, and meals on wheels. I pray i can stay as independant as i can and that my govt. will always let me have the services i need. I resent so that my days are centered around my self care and doctors appointments. I’m just 62 and there is so much i’d rather be doing at this time of my life. (It’s been 17 yrs). Thank God for the internet. I used to be a natural health consultant, and now have sites and blogs about RA and chronic pain, and involved in a few Facebook and skype groups.
    I’ll add you and your commenters to my prayers.. and see if i can check out your site.
    Thanks for sharing. I’m new to Creaky Joints.
    Linda Basta

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