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.