Hopefully Creative 3 – Managing Pain Through Craft

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.

Pain circleSo 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

Diary

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:

Distraction

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.

Stitchlinks

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!

Pacing

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.

 

Goal setting

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.

Hopefully Creative 2 – Purpose

I think we all need a purpose in life and that could be anything  – its the thing or things that get you motivated to get up in the morning and face your day. At the time of my relapse my purpose had evaporated if I’m honest, my daughter had become my carer so I felt that I’d even lost the “Mum role”. Although that was returned pretty quickly as she was being horrendously bullied by a local gang and was unsafe even at home at times. We had windows put through and even a “happy slapping” on the doorstep. And social services weren’t interested in helping as I wasn’t putting her at risk. The school were even more frustrating until I nagged the GP and he wrote to them and pointed out they had teachers off sick with stress, for far less serious reasons.

She at just 14,  had to cope with the death of her Grandmother, my worsening illness, the bullying and a glandular fever type virus all within a couple of months. We spent huge amounts of the time I could sit up in police stations doing video interviews and goodness knows what else. But I persisted with social services on a daily basis until the poor woman that answered the phones either cracked under the pressure or was fed up with hearing me, not sure which really! And they referred us to Connexions, as fantastic local youth service, who provided Lucy with a brilliant support worker for a year. One of the deputy heads at school also started to realise there were huge issues and took her under his wing. He had an unofficial mission to look after the “misfit” kids and worked with me to organise a flexible timetable, guidance so that I could teach her from home when she really couldn’t cope and he got the school counsellor, youth advisor and Young Carers worker helping her too. After about 6 months she was doing 3 days at school plus home schooling and was very much better, although she never really settled 100%…and on top of all that she was told she was likely to have an autistic spectrum condition too! The interesting thing for me was that she got better exam results etc when I home schooled her part time than when she was in full time school the following year!

As I said it was around this time I became a Christian, mainly through my daughter. She went to a local church youth club and the people there had been great too – if I couldn’t cope or needed to get her to an appointment they were more than happy to come and help with lifts or just providing her with a space for time out. Which also gave me the space I needed to get my head around things. I wanted to give her the confidence to go out again and she had been invited to do their Alpha course, so i rang and asked if Mums could go too as I knew she wouldn’t go otherwise. They made me very welcome and we sat with an elderly couple who were brilliant – they even told me how to pray to protect our home and I can honestly say within a few days of that, the problems ceased……..it was almost miraculous and it showed me that there definitely was “Someone Up There” who was willing to help!

To say it was a time of insanity and chaos is an understatement. The one thing that kept me sane was doing anything or everything creative. As well as cross stitching, knitting and crochet I learnt how to use paintshop pro via the “tag” groups that were around on MSN. I really enjoyed just taking things and being creative with them. It was an escape from the madness going on around me. I also researched and had a go at all sorts of other crafts from needlelace – bit disastrous! to creating handbags from plaited newspaper – decided not to pursue this due to the great English weather, but it was fun. I even tried sewing machines again when I was starting to improve and could be up and about longer.

I was also referred to the pain clinic at around the same time and I distinctly remember a meeting where the staff got a whole group of us together to teach us about the nature of chronic pain and how it could affect the body. It was surreal as I was the most disabled of the whole group, yet the most positive and I sat in silence until the end of the meeting just listening to the despair around me. I chatted to the nurse after, as I knew him from my previous job and we discussed the differences in attitude within the group and it made me realise, far more than ever before  just how much despair comes from a diagnosis of long term illness, whatever its cause. But I had no idea how I could help and they’d already told me that I was far too well adjusted for any of the groups they ran…. so I did a year of very slow physio with a fantastic lady who got me walking short distances again. We put together a programme of exercises I could safely do at home and then later in the pool – the theory being falling over in water was the far better option! And I think for months I was the entertainment at the local baths as I tried to regain balance and walk half laps of the slow lane! It worked well, once the carer had medicated all the lifeguards for anxiety lol! It did used to terrify them until they got used to me behaving like a very un-cordinated porpoise!

And as I improved I realised I wanted to teach, but had no idea what……. so being me I talked my way into an adult ed “Preparing to Teach in Lifelong Learning Course” to get some qualifications. The idea was that you were either teaching already or had a plan of what you wanted to teach – so I came up with an idea of training health care staff in better ways to work with people with long term illness, but ultimately I had to accept that it would be physically far too demanding for me. However I got alot out of the course, including my qualification and also I think managed to show some members of the group that disability wasn’t the end of the world. For my final assessment I took some real life scenarios and got them to think about the day to day life of a person with a disability and also how that could affect a person in the classroom… it went down really well and at times I think it might be worth thinking about either dusting it off and offering to run it for teachers or developing a series of blog posts exploring the issues I raised, in the hope it will help other creative skills tutors to come alongside learners who for whatever reason are at times more challenging to teach. What do you think?

So to sum up this post, which feels as if its rambled somewhat from despair to taking positive action along the way. I think the thing that I learned from all the above, was that it actually doesn’t matter what the impairments you have are, or how unwell you are, you still have a purpose to someone. It might be your child or children, your partner or spouse, your friends or even people you don’t really know who see you “putting on your big girl pants and doing life”. For me faith helps as I know I have someone bigger than any problem I can go to and lean on when it gets tough – and even now life is and can be very tough at times. But the difference is I know that “this too shall pass” and also through other support groups, self help books, the things I’ve learned from the Expert Patient Courses, the support I’ve had from other Christians and from some very good friends who have often walked into the fire with me, I know that I am in charge of my thoughts and my actions far more now. So when I start negatively thinking and feel like I’m being sucked down a drain because of life and its hand grenades I can stop the tape running and do something constructive or creative that will help me “change course” and move on.

 

4kcbwday6 A Tool To Covet

Hmmm today’s post is not easy as its hard to identify a physical crafting tool I prize above all others. Sorry for the lack of images but my tools collection and I are some 120 miles apart today. … Why? Well some have been given to me by lovely people who have passed on the story of the hooks or needles and their owners. One friend passed on her mum’s lace hooks shortly after she died for example and as I knew her mum I think of her each time I use them, even though they are not the best quality hooks out there. .. Other items I value because they’ve opened crafting up to those who appeared excluded due to physical impairment. Extra chunky needles that can be tucked into armpits or splints so someone with the use of one hand can have a go at knitting.  Knitting looms that have opened up all sorts of horizons for my headway group, discovered in a pound shop. Not my first choice of tool personally but they’ve changed lives. .. The huge bag of needles of all shapes and sizes I bought for £5 from a local charity is another plus.  I often give them to people who want to learn but lack the finances. Yes I do have the odd pair I won’t part company with as they’re perfect for my recycling projects but again no one glaring favourite I think the closest I come to a tool I love is within my crochet hook tub. I collect hooks from magazines, sales, charity shops and pound shops so that there is   always something to suit everyone In a taster class.  From basic 4mm hooks to chunky rubbery plastic kids hooks I usually have something for everyone.  But there is one hook I prefer to use if possible. … a pink, metallic, double ended 5 and 3.5 mm hook I picked up on a magazine somewhere.  Its weighted just right for me and is lovely and smooth to use. But as I write this I realise that the tool I most value is my ability to hunt down bargains and find tools that wuden access to crafting to all those who want to have a go….

Discovering Hope – The Role of Creativity

I had a completely different topic in mind for this week’s post but having spent a lovely morning teaching 3 ladies with learning disabilities to crochet a chain and make a bracelet it occurred to me to explore the role of creativity in building a sense of hope.

Ability

I honestly believe that we all have a creative ability…. it might be handicrafts, art or even building a wall – it doesn’t matter what it is you like to create, the only thing that matters is that you put your heart into it and are pleased with what you have achieved. It actually doesn’t matter what anyone else thinks of your finished work – they might love it, they might not but that’s not the point. The point I believe is in your personal achievement.

I’ve already shared bits of my own story – how I’ve rediscovered that I can be creative and the journey I’m taking into freeform work. However if it wasn’t for crafting I have no idea where I’d be now! 5 years ago I was pensioned off by the NHS following a massive flare up of the complex pain syndrome I have. I was pretty much bed / chair bound and came out of a discussion  with a back to work provider feeling pretty fed up – I was told if I wanted to work I’d have to find a job to do laying down!! I sent my daughter off to the shops for a kids knitting kit and had ago and found I’d not lost the ability so started making things – I hunted down yarn and fabrics on Freecycle and in charity shops as I got a bit stronger – thanks to the pain clinic and their brilliant and very inspired physio – and eventually opened a Folksy shop. Things gradually grew from there, I gained an adult teaching qualification about 3 years ago. It was pretty scary going into the classroom in a wheelchair – I wasn’t sure what the group would think etc but it was great and I found I could still teach! Since then I’ve run workshops and classes with the help of friends and family and attended fairs etc. And met some equally amazing people along the way….

 

I’ve mentioned the Headway group before – currently they’re embarked on

knitting preemie clothes for Lisa’s Stars. The loom knitters are producing hats, one lady who hates knitting is making tiny blankets and another lady who has not been able to follow a pattern for 8 years is now churning out tiny hats, mitts and booties from simple patterns and has decided to attempt a tiny cardigan over Easter. I’ve rewritten the pattern so its a bit easier to follow and I’m sure she’ll do it as her confidence is really growing. Our next project is to make a wall hanging / quilt. Its going to take some inventiveness but our sewing star has promised me she’ll make sure I’m teaching things well so I’m sure it’ll be fine. When I first met the group I had no idea what would be possible but to see them grow and gain confidence through their achievements is amazing and no matter how bad a day I’m having I always come out feeling better. Its easy to look at the label and decide on people’s capabilities but its only when you give people a chance to do something creative and forget labels that you discover their potential.

 

I’ve recently started working with a group of ladies with mental health issues on a monthly basis. I support them in working on projects of their choice. Some can already knit or crochet and need a bit of confidence and others are beginners. The rule I work to is progress not perfection so until the person can confidently do something I don’t spend time on mistakes because it actually doesn’t matter. What matters to these ladies is that they are doing something and achieving something that they feel good about. One of the group has already joined the Friday Knit and Natter group and is making new social contacts too.

And talking of Knit and Natter, we’re a diverse group sometimes all female, sometimes with the odd man coming along. Some can knit or crochet well, others are complete beginners. We talk about all sorts, help and support each other and I think encourage each other to achieve. For some members the group is a break from a fairly isolated lifestyle, for others its a chance to learn something new or pass on existing skills. One girl had never tried knitting or crochet at the beginning and is now making toys and dolls clothes for her children.

And this morning was amazing – I worked individually with each lady and their helper. Ok the correct crochet grips etc went out the window but everyone was really proud of the chain bracelets they’d made. I was kept busy making flowers to add to them and everyone took one home to give to a friend or relative as an Easter gift. One lady has asked if I can come again as she eventually wants to make a blanket and I’m really looking forward to it.

So based on my experiences, I think hope for the future comes from feeling positive about yourself and one of the best ways of feeling positive is to have a sense of achievement. And creativity definitely has a role!