2am. I am awake because there is pain all over my body. My ankles and knees are aching. I want to throw off the sheet because it feels too heavy. But it is cold, so I keep it over me. My electric blanket is on, in the hope that the heat will help ease the pain. It does. Some.
My hands hurt too. And they have pins and needles. Not the kind that tickles…the uncomfortable kind. They are going numb. And yet they still hurt…how does that work?
My elbows ache, my shoulders, my shoulder blades….there is no way for me to lie without putting pressure on a flaring joint. I can’t roll over…my lower spine (SI joint) feels like someone has stabbed me with a screwdriver. Each time I breathe in and out my ribs feel like I am being stabbed with hundreds of knives. My rheumy tells me that’s costochondritis. Always nice to have a name for things…not that it helps at 2am.
Should I take pain killers? From long experience I know I would need strong narcotic pain killers, like oxycodone, to have any effect at all. I have tried everything from panadol right up to oxycodone. I have a range of pain killers of varying strengths.
If I take the heavy duty painkillers I will have a drug ‘hangover’ tomorrow. I’ll feel sleepy and dopey and won’t be able to function anyway. I already took oxycodone at 7pm. That wore off long before midnight. Now the pain has gotten so bad that I am awake again. If I am hungover tomorrow I won’t be able to work. But if I’ve been awake all night, same deal. I decide to tough it out. I’d rather be lucid.
My Achilles tendons are aching – I don’t want to stand on my feet because it feels like they will rupture. My feet feel like they are broken, anyway. Someone mentioned plantar fasciitis once or twice. My rheumy? My GP? Who can remember at 2am?
I stand up and the pain shoots through my Achilles tendons. Achilles tendonitis? My rheumatologist has explained all about enthesitis. The inflammation of the insertion point where the tendons connect to the bone. Very common in the Achilles tendons and people with inflammatory arthritis are prone to it. I also have a lot of trouble with the tendons in my hips.
Enthesitis. Just another word for ‘pain’ as far as I’m concerned.
It feels like I’m walking on glass as I hobble to the kitchen to heat up some wheat bags. Ten minutes later I am back in bed, on my back, with a heat pack across my hips, one across my knees and one across my ankles. I have wrapped one around my jaw as well, because lately it has been aching. My temporomandibular joint (TMJ) is inflamed also. I have been playing my own personal game of ‘Will it Blend’ at every mealtime for weeks now.
I hold the last heat pack in my hands. My aching hands. And I lie there and try to sleep.
3am. Still lying here.
4am. Still awake. The pain has not subsided. I am starting to drift though…at some point sheer exhaustion takes over.
6am. I am awake again. I must have fallen asleep sometime around 4am. I don’t feel rested, although the pain is not as bad now as it was. My heat packs are cold and heavy, so I push them out of the bed. My body feels heavy because I am so tired. I will try to go back to sleep for another hour. I don’t have to get the kids up until 7am.
6:30am. I am getting up. The pain is getting increasing again, and lying here is only making it worse. If I get up and start to move I’ll feel better than lying here. Oh and coffee. Coffee will help.
My eyes feel gritty and dry. Like they are full of sand. It stings. The light seems to make them sting more, but I can’t go around with my eyes closed all day. Is this iritis? Sjogren’s Syndrome? My rheumy has mentioned both. I have to put eye drops – fake tears – in my eyes several times a day. To lubricate my eyes, to prevent the discomfort. It’s just one more little thing.
Standing up again. Pain shoots from my feet through my knees and on to my hips. Looking in the bathroom mirror, my eyes are bloodshot and so swollen it looks like an allergic reaction. But its not. It’s inflammation. Attacking my eyes. Another of the joys of RA – it can attack anywhere. So much more than just sore hands and feet!
I can only penguin shuffle off to the kitchen to make coffee. There is no point in limping – RA is symmetrical. Which side would I limp on?
Thank the gods for those little rubber mini sized mat things that I use to open jars. They allow me to grip the coffee jar, and get it open. Things would be substantially uglier if I couldn’t get my morning coffee…
While the coffee is on the stove, I heat up my heatpacks again. I strap one to my lower back and hang another over my shoulder. I can’t raise my arm above half way this morning. The heat should help loosen it up soon.
I wish I could strap a heat pack to my jaw. I have a constant dull ache in my jaw, which gets worse if I move it. Even to talk. If I try to chew something the pain is sharp and intense. Lucky you don’t have to chew coffee.
7am. I am nearly finished my coffee and I am feeling more human. I am still stiff all over, and as I go through my gentle stretches to try and ease some of the stiffness and relieve some of the pain. I envy all the people who can jump out of bed and tackle the day. Emphasis on the ‘jump’. Without pain.
But these are pointless thoughts, and I push them away. For 36 years I was one of those people. I never appreciated the sheer joy of free movement, of not being in pain. I also know that many people get RA much younger than me. I remind myself that I am still luckier than many people.
Time to wake the kids and get them breakfast. Get them to school. Have a shower.
I take a long shower every morning. It is the single most important part of my morning. It washes away the last of the stiffness, and eases much of the pain. But not all. And when the shower stops, so does the relief.
I have tried many morning routines and this one works the best. It takes a full two hours for me to feel human. And to look human. My eyes are much less inflamed now. I still look like the elephant man to me, but I must admit to others I would just look a bit puffy eyed. They would probably think I drank too much last night and am hungover, I suppose. Whatever.
9am. Kids are at school. Yay! My most important task for the day is complete. Now I need to try and work. I am a web developer and I work from home. I’m very lucky to have this arrangement. I am only capable of working about 15 hours per week. About 3 hours per day. Usually broken up into two lots, with a break in between. So essentially it takes me most of the day to get 3 productive hours in that I can bill for. But as I said, I am lucky. Part time work is very hard to find. Understanding employers, even harder.
Again I strap some heat packs to me, and sit down at the computer. The pain has gone down to background noise, and I focus on my work to take my mind off it. Because I am not actually in a ‘flare’ right now – all of this is just ‘normal’ for me – the pain has become mild. Annoying. But it doesn’ t stop me working.
10:30 am. I need to take a break. Walk around. I do some dishes. Dunking my hands in the warm water feels amazingly good.
11am. Back to work for a bit.
12:30pm. Lunch break! I should be able to do another hour of work after that. Or some housework. I will have to choose one, the other will have to wait.
2pm. I will have to pick up the kids soon. Head for the shops, figure out something for dinner. I’m still feeling pretty good. When I go outside in the cold my hands start to turn yellow and bloodless. Then they turn purple. It hurts! This is Raynauds Disease…another sign of Rheumatoid Arthritis and other autoimmune diseases. My hands are numb and its hard to grab the steering wheel. I need to warm them up – why didn’t I put my gloves on??? Oh yeah, because its not actually that cold and I keep forgetting.
3pm. Pick up the kids. They are happy and excited, and telling me about their day. We have afternoon tea and do some homework, and again I realise I am way luckier than a lot of people.
4pm. I am feeling OK. Starting to stiffen up, but there is a pilates based class on at the gym. I will go. It will do me good. I head down there and warm up on the recumbent bike. My knees crack and grind as I force the pedals around. My ankles are giving me trouble too – they don’t want to bend. The first five minutes of exercise always hurts. But once I start to warm up, I have learned that the pain decreases. So it’s worth pushing through. There is a reward. A reduction in pain, albeit temporary. There are all the other benefits of exercise as well – increased muscle strength, improved cardiovascular health…exercise is good for everyone.
It is especially good for people with Rheumatoid arthritis.
Of course there are some days when exercise is completely impossible. When standing up is hard work, exercise is off the agenda. That’s when I am in a true flare. Not just everyday pain. And there are some people with severe rheumatoid arthritis who never feel good enough to even attempt exercise. So again, I realise I am luckier than some.
The first half of my pilates class is strength based, using my own body weight to build muscle. The second half is composed of lots of stretching, which is so good for arthritic joints. Other days I life light weights, or do a light workout on the cardio machines. The recumbent bike is good for people with lower back pain. The elliptical trainer is low impact cardio. On my best days, or really determined days, I run on the treadmill. Or jog, really. I do whatever I can do on the day.
I leave the gym feeling much better than when I arrived.
6pm. The pain has returned with a vengeance. My ankles, knees, hips, shoulders, elbows, ribs, jaw are all taking turns at feeling the worst. I have to get dinner prepared, then I can painkiller up.
6:15pm. Endone (oxycodone). Ahhhh.
6:45pm. Narcotic pain relief has kicked in to a point. A glass of red will hurry it along. The dishes will have to wait. The kids and I will watch TV until bedtime now.
9pm. Exhausted. Everything hurts again, the endone has worn off. If I take another, I’ll probably be hungover tomorrow. If I don’t, I probably won’t sleep tonight.
I take another. I don’t want another night like last night.
10pm. Drifting off to sleep.
2am. I am awake because there is pain all over my body.