I am writing this in response to trying to explain to someone else what it is like to live a life feeling pain to some extent. It is not an easy thing to do, I mean have you really ever tried? All I could come up with to say was, try and imagine permanent flu ache, that doesn't give it justice or even explain it at all. I would like to say before I start, that this is not a cry for sympathy. I didn't start this blog so that I could gain sympathy, but so that I could help others to be strong, know that they are not alone and keep smiling. I hope in some way that this post will help even one person to explain to a loved one what chronic pain is like.
So here goes....24 hours of me and my pain.....
Mornings - burning joints, aching muscles and problems weight bearing
Pain changes, it is not always the same pain and certainly not always in the same locations for me. In fact, throughout the day it can change even as quick as hour to hour. Mornings for me are always a throbbing ache period of time. Stiff, achy joints, coupled with that soreness you get after excessive exercise in your muscles. Every morning it feels like I have run a marathon during the night.
The worst pain is generally located in my thighs that feel wobbly and weak, my shoulder blades that ache like I've been lifting weights and the soles of my feet that feel like they have needles jabbing them. Sometimes I also have swollen ankles upon waking, that tend to lock up on me. The hardest part of mornings is definitely the first step out of bed, putting weight onto stiff joints and aching muscles can be excruciating at times.
This type of burning ache will last as long as it lasts. Sometimes I can get to the train in the mornings and the pain will have evolved to the next stage - I will come to this. Sometimes this pain will last until early afternoon, making sitting down extremely uncomfortable on my thighs and knees. I will generally take 2 Naproxen at around 8 am and do without them, if I can, when I am getting up. Yes this doesn't always work, yes I have woken up and reached for the pain killers before 6am and yes it is not a great way to start the day. Waking up to pain certainly sets you up mentally, for a day you know will be constant pain. I no longer remember how it feels to wake up to no pain and refreshed - that is the saddest thing to type.
Afternoons - stabbing pains, stomach pains, headaches, swollen joints
So after a full morning of throbbing muscles, aching joints and shoulder blades that burn, you would think it would begin to calm down. Well, for me, the majority of these do for a while, only to be replaced by different pains that completely depend upon what I am doing. Monday to Friday I work, so I sit in a desk for the full day and this sitting begins to get to my back and knees at around 12pm. This makes me squirm at my desk for the rest of the day, it is the reason I have a hot water bottle in work and space out my pain medication so that I can continue through the working day. Along with this, I also begin to suffer IBS symptoms in the afternoon, namely stomach cramps. Some of this is because I am sedentary, I do find my IBS is better when I am walking around. The cramps from IBS can be so severe they only add to the overall pain I am feeling.
Along with this, I am a writer and come the afternoon my hands become so sore, I have resorted to placing a desk fan directly on the to cool down the burning joints. For this I apply deep heat, cooling patches or fans and pain killers; but none of them work 100% so I put up with it.
If I am out and about at the weekend for example, the afternoons are when my ankles, wrists, hands and feet swell up. I am not sure why they do this, I am guessing it comes down to the walking around town or whatever I am doing at the time - or it is simply another lupus enigma. The pain from these swollen joints can only be described as feeling like my bones are breaking, especially the small bones within my feet. It's a weird sensation, like I can physically feel my skeleton at all times. I will also, 80% of the time, develop a headache, this goes up to 100% of the time during summer when it's sunny. This is not a blinding headache, more like a dull throbbing right behind my eyes. This wont go for the rest of the day either, no matter what I take for it.
Night time - Swollen ankles, swollen hands, sore shoulders, nausea and neck pain
Night time is the one time of the day we all get to relax, we get a break from work and we can wind down after a long day. That is unless you have to deal with yet more pain. I never get a break from it, it is always there, just somewhere out of reach. In the evenings, after work or play, I will experience similar pain to the mornings. It is when I start to get stiff joints that don't want to move. This is worse for me in my shoulders, ankles and hips. The burning ache that comes with them is only exacerbated by the fatigue, some nights I literally cannot get up from the sofa to get a glass of water. Just the thought of moving makes me feel dread as I know I will suffer just making it to the kitchen.
The evenings are also the worst time for side effects from the medications. I am not sure why, maybe it is because they have built up over the day and now they are coming back to bite me. The sick feeling works alongside the aching to create a rather lovely duo....yes the Brits are known for our sarcasm!
Now, you may be thinking that lying own in bed will help. Firstly, no one wants to go to bed at 7pm and secondly lying down just brings with it new pains, mainly for me within my neck and spine. Some nights, simply lying on my back makes me feel like my spine is breaking. I sleep on my side now, causing my hips and neck to hurt. There is NO comfortable position and I have tried them all.
So with all of this pain throughout the day, sometimes the only answer is to sleep. Well that would be great if I didn't wake up every hour from having rolled over, causing stabbing pain to shoot through me, or I wake up from the headache, or I simply can't sleep due to the pain in the first place.
Then I will wake up when the alarm goes off at 5.30 and do the whole thing again. Yes this may well be 24 hours on the blog, but the reality is this is the rest of my life. So now you know why I wake up an hour before I have to so I can get moving, I get grumpy in the evenings and I often burst into tears.
You see, for someone in 24 hour pain, there is no single cure, no simple answer, you just develop patterns to cope. I am now an A List actress! No one would look at me and think I live in pain, my colleagues wont see it - apart from last week when I had a little break down. I am a fighter, resilient and compassionate. At the end of the day, that person you see on the street may be carrying the weight of the world on their shoulders, so next time you meet someone new, just bear this in mind.