My last post was about crafting helping me find a sense of purpose, and I’d mentioned being referred to the pain clinic and also using some of the things I’d learned from people in my previous job with the Expert Patients Programme to help me get better. So I thought that this week instead of skimming the surface of my story I’d talk about about how crafting helped me manage my pain and get better.
So to start, I have a spinal problem that causes chronic pain, fatigue and from time to time episodes of bizarre muscle spasms, which can be anything from mildly irritating to downright debilitating and embarrassing, but also handy for terrifying baby lifeguards at the pool if the water is a little on the cold side! Chronic pain is very different from the pain you get with headaches, toothache etc and often is hard to describe. Sometimes it can be a continuous dull, draining ache, at others it can feel as if 2000 volts of electricity are shooting into your spine and down your arms and legs, or perhaps like someone is sticking needles in your thighs with every step you take. Other times its like having pulled muscles in bizarre places or at its worst like there’s someone living in your spine who has large boots on and is attempting to use all their strength to put the boots through the bones, whilst another member of the body inhabiting team is taking all the muscles in your back and twisting them as tightly as possible, like string around a pencil. Another bizarre symptom is hypersensitivity – the worst area I have is my neck, shoulders, back of head and upper back and arms – if someone touches me gently I can go into such a severe spasm I fall off the chair I’m sitting on, and getting into the pool is a nightmare if the water is cold as that also sends me into spasm as soon as any of those parts touch the water – fortunately the spasm subsides as my body adjusts to the temperature but it does mean I need to choose my pools carefully and definitely can’t swim without someone with me. I also get weird sensations like ice being tipped down my outer legs or if I touch my lower leg on a table leg for example it feels like someone is holding a candle flame near my skin.
The most frustrating thing is that because your nerves are generating all these insane pain signals, your brain tends to respond by making you sit on your backside and because this is unpredictable, falls are pretty much inevitable. It also means that when walking different muscle groups can pull up into spasm without warning and I can end up in some very interesting shapes – so to go very far I need a zimmer frame or wheelchair. The spasm also makes the muscle tired and then my legs gradually seize and stop working, first my feet drop and the rest of the legs rapidly go and I literally cannot stand. All this is really tiring to live with and the medications I need to take are pretty heavy duty and can also cause feelings of tiredness. So another issue is fatigue, which means I have to plan my time carefully where possible and build in rest periods.
So where does crafting fit into all this? Well one thing I learned was that many symptoms interlink and feed off each other, making personal experience of illness worse. For example pain can cause fatigue, fatigue makes you feel down and useless, that in turn can lead to depression, depression makes your perception of pain and other symptoms worse, this leads to anxiety, which leads to muscle tension which leads to even more pain…… so basically living with any form of long term illness means you can get trapped in a vicious circle of symptoms. But it is possible to break the cycle and do things that help you lessen the impact of the condition on your daily life and gradually build up what you are able to do before the symptoms impact on you again.
Crafting and Pain Management an Example
The above “diary” is a condensed version of one of the notebooks I was keeping at the time to record my symptoms and what triggered them. Oddly its a very motivating read as I can see just how far I’ve come and I can also look at it during flare ups and realise I’m not back at the bottom of the ladder yet!
When I looked at my notebooks I realised that I was incorporating 3 key strategies to help me break the vicious cycle described above – distraction, pacing and goal setting…. all of those can be used to help you build some craft time into rest periods whether you are recovering from an acute illness or operation or living with a long term condition. I’ll explain how each technique works and then show you how crafting fits in:
This technique works by taking your mind off the situation you are in,and removes the focus from the illness and how it affects you.It effectively breaks the arrows that link pain, fatigue and depression by cutting right through the middle. This is because your mind is absorbed and you are focusing on something outside of yourself – so the symptoms recede to the back of your mind and become less important. Therefore you have taken back control and are able to do something about your situation.
Crafting is brilliant for this because it requires both physical skill and imagination, which keeps the brain very well occupied! When you create something, you first start with an idea, a picture in your mind which you can focus on – result, less pain as your brain is tuning into something different. As you take the idea and start making it into something concrete your hands are busy – you’re using a wide variety of motor skills, again keeping that brain occupied, so again the symptoms are staying put at the back of your mind! Time tends to pass more quickly too as you are not clock watching and waiting for the next dose of medication….
From the groups I am involved with, my clients often talk about how crafting is helping them deal with symptoms from pain through poor concentration to depression and other major mental illnesses. They all say apart from the opportunity to get together and chat to other, that it really takes their mind off things. I hope that I can gain permission to write up a couple of individual case studies as this series develops so that you can “hear” similar stories from others.
If you want to understand the science behind distraction and therapeutic crafting, Betsan Corkhill is a physiotherapist who has set up an organisation called Stitchlinks, to support people with long term illness who use craft in this way. She has been involved in many research projects and even runs conferences. Even if you don’t want to sign up for anything the site is well worth a visit and I promise you’ll learn alot!
In one of my notebook entries, I said ” my shoulders seem to be more painful, perhaps I need to have some rest breaks” This is the one “danger” of distraction, that you get so into what you are doing that you overdo things and forget to rest and that is where pacing comes in!
Pacing is important because trying to continue living your life as you did before, means you quickly come unstuck! When you start pacing yourself it can seem restrictive and frustrating but over time it allows you to gradually and sensibly increase what you are able to achieve, without putting your body into flare ups. However if you can pace yourself then you start to notice small improvements in what you can do.
Pacing isn’t easy though and sometimes its fine to say “I’m doing what I want today” and just go and enjoy yourself, whilst having planned a rest day a day or so later. Pacing works by never pushing your body to the point where your symptoms worsen, which can be difficult when your symptoms fluctuate or you have a flare up / relapse as you do need to start virtually from scratch again.
How Do I Pace Myself?
Using my example I developed shoulder pain after around 40mins stitching. So I knew that was my limit at the time.
To reduce the likelihood of pain I halved the time I stitched to 20 mins and took 10 min stitch breaks initially. Over time I was then able to up the time I stitched by 5mins a week i.e. 20mins per session week 1, 25 mins per session week 2 etc, but I kept the 10min rest period. Once I could stitch comfortably for 40 mins at a time with no pain I was happy. However if I had wanted to continue to up my stitching time, I could have continued to add on 5 min increments, but in this case it wasn’t necessary.
However when I swim I continue to add lengths and reduce the rest period between lengths – so currently I can do 6 x 2 lengths but my aim is to swim 3 x 4 lengths and then once I have fewer rest breaks increase the distance by 1 length at a time.
This is the key to using the tools I’ve described above. The idea is to take a long term goal and break it down into weekly or even daily steps that you know are achievable. Goals must be something you know are within reach over time, otherwise you are setting yourself up to fail and you end up feeling more depressed and hopeless. I know I’ve done that many a time and its really not worth going there! I usually aim to do an activity 2-4 times in the week. Why? Because I would need to plan for bad days, perhaps the great British weather and family stuff – so I make my goals achievable by being realistic about my condition and the demands on my time. Goals also need to be measurable – have a set target in terms of time, distance or the amount of work you plan to do.
A personal example, which isn’t crafty is my swimming programme
Long term goal 1: Swim 6 x 50m lengths of the pool within 3 months
Where I was at: I was able to get into the pool, do my physio programme and swim 20m before I was exhausted
Goal 1: To swim 2x weekly and increase the distance from 20 to 25m over 2 weeks
Goal 2: To swim 2x weekly and increase the distance from 25 to 50m over 2 weeks – swim 2x half lengths
Goal 3: To swim 2 x weekly and increase the distance from 50 to 150m over 4 weeks – swim 3 lengths
Goal 4: To swim 2x weekly and increase the distance from 150m to 300m over 4 weeks – swim 6 length
Did I achieve it – yes and in under the 3 months I allowed as I paced myself carefully and added on an extra half length each time I swam.
I’m currently swimming just below this target as I’m recovering from a flare up and viral infection so when I swam last week I made sure I was aware of my body and my fatigue levels and reduced the distance accordingly. I have also changed pools to one which is both warmer and cheaper, so am now in a 25m pool, so need to swim 12 length to reach my target. Next time I go I will assess how I am after 8 lengths and if not too tired will add a 9th.
I hope this post has helped, my aim was to to demonstrate to my readers that crafting can help you change your focus when you are going through as rough spell, whatever that might be and to explain how the tools I use work, so that you can apply them to your day to day life. You don’t need a long term illness to use them either, as we all tend to have extremely busy lives these days and often don’t take the time out we need to rest or do things we enjoy.