No I am not on about the types of flares you find on a boat for sending up in times of distress, although they might come in handy because having a flare feels like you are sinking! I am talking about the distressful type of flare that everyone with chronic pain can relate to –
- the kind of flare where the pain is so high you feel like there is no end in sight,
- the kind that can last from a few hours to days, and even to weeks,
- the kind that leaves you feeling exhausted for a long time,
- the kind that stops your life dead in its tracks until it passes.
As for pacing, I am not on about the kind where you pace the room with anxiety, or where you pace the length of a bus, or keep pace with everyone in a marathon. The pacing I am talking about is the managing life kind of pacing when you live with chronic pain, those intricate decisions that everyone takes for granted, decisions between making a cup of tea or going to the toilet, whether you wash your hair or get dressed, basically the kind of pacing that chronic pain sufferers need to do every single day to be able to live some kind of life.
The reason that got me writing this today was a couple of things really –
- A post by The Princess in the Tower
- A post on Facebook by a friend who is suffering terribly with Fibromyalgia pain
- Because I too am suffering terrible pain from both the Fibromyalgia and the CRPS, especially over the last 24 hours.
Yesterday I did a very basic chore that most people can do without blinking an eye – they can do before work, after work, at the weekend, in their lunch break, really whenever it suits them – it doesn’t leave them feeling tired, they don’t have to wait for someone to be there to help them, they can do other things afterwards, they can reach things without help, they can go on and do other stuff afterwards, all without having the detrimental effect that this one insignificant chore had on me!
Oh to be able to do this chore and for it really not to be a chore! Believe me if you are in good health you may see this task as a chore in comparison to everything else you can do, you may even enjoy it – I know I used to feel both of those. However if you are a chronic pain sufferer then this chore really is a chore. It’s a chore which seems to need more preparation and planning than what is needed to climb Mount Everest, and makes you feel like you have climbed Mount Everest once it is done!
Ready for the big reveal?
Have you guessed what this chore is?
Yes, you read right, I said shopping. I went grocery shopping after work last night. This is something that usually the hubby does either on his own or with me tagging along for the ride, it’s not something that my son and I do on our own.
There is a reason why I wanted to do the shopping, and that reason was to release some of the burden on my hubby. He, after all, is my main carer, doing absolutely everything that I can no longer do, and doing everything else that would tire me out or increase my pain levels. Apart from being the love of my life, he is also my pacemaker! Without him I would not be able to do all the things I love and my life would certainly become one big long chore of struggling to do the mundane tasks in life that most take for granted, the ones most can do without that task affecting everything else.
I also want to do the shopping on a Wednesday after work for selfish reasons – those selfish reasons are that I want to spend more quality time with my hubby at the weekend doing stuff we enjoy together, plus I am off on a Thursday so I can collapse in a heap to recover ready for the weekend. I can do this without having a pang of guilt that vital rest time is eating into quality time that I could be spending with my hubby and son. Oh and I also want to build my stamina for my trip of a life time this year.
Going shopping is at the extreme end of the pacing scale in my books. To be able to manage what I did yesterday afternoon after work, I had to watch what I was doing in the couple of days before hand, I had to make sure my daily pacing was spot on. To help with pacing during the shopping trip itself, I had to use my wheelchair – this both sped up the process and enabled me to rest at the same time; I only wheeled myself for short bursts otherwise my son pushed me – again this enabled me to rest when I could and took the pressure off my damaged shoulder (another story!), my son packed the shopping and loaded it into the car, again whilst I rested. Then today I have had to rest for practically the day so that I am fit for going back into work tomorrow.
Even with the pacing I did in the lead up, during, and after the shopping trip, I have still ended up in a bad flare. I suffered greatly afterwards with CRPS pain from the tip of my toes right up to my hip and left buttock and also Fibromyalgia pain every where else. I am still suffering today with the pain, along with the tiredness and exhaustion that comes from increased pain levels. In the “spoonie” world my spoon drawer is practically empty – so any spare spoons at this point will be gratefully received!
I find shopping is a hard one to pace for and I don’t think you can rest comfortably for long enough periods during the trip to prevent a flare, so I tend to try and get it over with as soon as possible so I can get home and comfy enough to start the recovery process. This is a good, or should I say bad, example of the “Boom Bust Cycle”, click this link for more information on Pacing for Pain Management and an explanation of the “Boom Bust Cycle”
I know that pacing works far better when you do a little bit, stop and rest, then do a bit more – making sure you are resting long enough to recover before continuing, by doing this your body learns that activity is good and does not go into flares quite as much. With this said, when you suffer with CRPS or Fibromyalgia (or probably any other pain condition) you don’t have to do anything strenuous to end up in a flare, flares can happen for no reason whatsoever, however I have found that pacing can really help minimise the number of flares, along with their severity.
Pacing and resting is truly the key to being in control of your pain, rather than the other way round. When a flare happens then the pain is in control of you – it makes you stop, it makes you miserable, it makes you feel sorry for yourself, it also makes you grumpy. The only way to recover from a flare is to rest – that is where the pain has control over you – it makes you rest, you have no choice. I find my body shuts down, completely stops, even my brain hurts with trying to stop the pain, which means that distraction techniques (I use this one a lot, really works for me), relaxation and breathing goes down the pan because the pain takes over your head and your body. There feels like there is no escape! It feels never ending! Have faith though if you are in a flare because there is escape – the pain will ease and you will get back to more manageable levels of pain. It is only once you get to this point that you can take control back by starting to pace again.
If you are practicing pacing, especially if you are new to the art of pacing, do not feel like a failure if you end up in a flare. We all push our bodies beyond their limits, even the healthy among us. After all we are all human beings, and right from an early age we constantly push the boundaries to find the outer edges of our existence and ability (and just to be plain naughty sometimes). Being older, and supposedly wiser, does not stop the human instinct to push boundaries and try to push ourselves beyond our capabilities, after all that is how the human race has evolved from drawing on cave walls with chalk to the modern computer age where we can communicate with the world at a touch of a button. So to flare is not a fail – to flare is a way (albeit a debilitating and painful way) of finding the outer edge of your existence, learning from that, and recovering with the knowledge of how far you can push yourself the next time!
Footnote: Pacing is far better for your health and general well being than the “boom bust cycle” that causes flares, however I am a realist and know that life does not allow for proper pacing all the time, plus I think that sometimes you just have to go for it and suffer the consequences afterwards for that moment of being able to live life “normally”, or to be able to experience a precious moment you can’t relive.