It’s a very strange thing when you stop working because of ill-health. The only thing I can really compare it to in any way is it must be a bit like what retirement feels like. It’s the end of an era, you’re admitting that you’re not able to function like you used to, you’re taking some time for yourself and you’re putting your working life behind you. But retirement is expected, and it’s a celebration in some ways as well. When you stop working 40 years earlier than expected like I did, you don’t get people celebrating your working achievements with you or praising your dedication and merits. I didn’t even get a leaving card or a cake. It was a bit like I died- I just ceased to exist in the working world and life carried on for everyone around me.
I get it, to everyone else – family and friends included, not just work colleagues- it’s a case of people don’t know how to respond. It’s not like leaving for a new and exciting job role, or a change in career, or going back to studying, where you can wish someone luck in their new projects. It’s not like giving up work to go on maternity leave or to concentrate on bringing up your family where you can at least make jokes about the perils of parenthood, while also wishing luck for the future. It’s not even like taking a break because I’ve got cancer or another illness with an end date on it and I’d hopefully go back to work sometime in the future. So people didn’t know what to say, and, truth be told, it’s only now I think about it that I realise what would have helped me at the time.
I realise now that I didn’t fail because I stopped working. But I felt like that was the case because of my feelings about it and because of the way people (inadvertently) made me feel by dodging the subject or the way they spoke to me about it. There should have been something to mark the successful bits of my career.It takes a bit of getting used to, being unemployed, even if you’ve been off sick for a while beforehand. It’s completely different and still comes as a shock. It also takes a bit of getting used to admitting you’re disabled. So until Christmas, I basically was trying to find where I fitted in the world without my job and all of the things I loved about having a job which came with it. Not to mention the sudden drop in income and the change in lifestyle which has to come with it.
I decided to knit everyone I knew Christmas presents, which kept me busy. But then I got to January, where everyone always feels sad and depressed anyway and it kind of hit me. What the hell am I going to do with my life now? The way I saw it, there was two options:
- Give up and become a victim-like personality and exist purely as my illness and nothing else.
- Find myself a reason to get up every day which gave me some sense of purpose. I can’t work but I can find something to do with my life which makes it actually worth living. I’m definitely not living the way I planned my life to be, but I can’t do much about the cards I’ve been dealt, so I may as well make the game as good a one as I can. Just because I’m incapacitated doesn’t mean I’m incapable. I still have worthwhile characteristics and qualities which didn’t just vanish when I stopped working.
Number 1 is by far the easiest. If people feel sorry for you, you get attention, and who doesn’t feel better from attention? You can use your illness as an ‘excuse’, some people will let you act in whatever way you want ‘because you’re sick’. But it’s more pity than attention, and it’s completely fake. And, if you’ve got a normal lifespan with your chronic illness, other people aren’t going to put up with you acting like that forever.
Number 2 is definitely harder. Most mornings I wake up and think ‘here we go again, I feel awful, I haven’t really slept, I wanted to do X today, but I probably won’t manage. Why is the kitchen so far away to make my breakfast? Can I really be bothered with this?’ In January, it was even worse and I really struggled mentally. So I decided to do something about it.
I sat down and thought about what I’d like to do with all my ‘free’ time if I wasn’t restricted by illness:
- support a charity
do sports play music start a business
- meet up with friends
- Take up a hobby I do every day
Then I put a line through all of the ones I can’t do because of illness. Meeting up with friends with no money wasn’t going to be a sustainable thing. Plus they have jobs during the day. Reading is something I struggle with. I’d been supporting Post Pals, a charity which sends post to seriously ill children to cheer them up over Christmas with their reindeer post scheme, so I contacted them and asked if there was anything regularly I could do. They said people send their kids post all year round. I know I like receiving post when I’m feeling poorly and depressed, so I decided to find something along those lines which I could do. I could do it from home when I could manage it with my illness, which was good for me too.
However, as much as sending post to children would give me something to do every now and then, it wasn’t really the regular thing I was looking for i.e. something every single day. What else can I do every day? Knitting. I was doing a lot of knitting. I could also write blogs on my phone. The thing with me and charity work is that I don’t do charity work for the ‘praise’ I get back. I actually prefer doing charity stuff if I don’t get feedback from whoever I’m doing it for, because it makes it feel less like I’m doing it for myself and more like I’m doing it for the ‘right’ reasons (in my head anyway). But, I was pretty isolated, and I knew that whatever I was trying to do every day needed to be something which involved a two-way interaction process with another human being, so that I didn’t get stuck in a depressive spiral.
So I had knitting, Post Pals and writing as my ‘things I can do most days’ list. I’d been making a lot of animals for my nephew because I’d got bored of making conventional things like scarves. The animals were good to make because they only took me a couple of days each and they knit up in sections, meaning I can start and stop them when I needed a rest without getting lost. Except my nephew was quickly developing quite a zoo in his bedroom, so that couldn’t continue much longer. But I thought ‘if he likes animals, then other kids will too. Maybe I’ll make some for the post pals kids‘. Another thing which I realised, is that I always have some kind of stuffed toy in my hospital bag because it gives me some kind of comfort when I’m feeling vulnerable in a hospital. Now, if I like to have something pocket sized to take with me as a 30 year old, those kids from Post Pals definitely will. What if the animal was their friend? And wrote a letter to them to say hello when they got sent to them? Or, what if the animals talked about what they’d been up to before they got sent to the child, and then the child could introduce them to their world?
Basically, I came up with: knit an animal (daily habit), persuade a friend to take out an animal and take photos of it doing things (2 way interaction for me), write a story (daily habit), post the animal and story off to the post pals children (charity). My doctors, especially my psychiatrist all heartily approved of me doing this.The friend who took the first animal out for me works in comms, so suggested social media to get more people involved, and because she found the whole concept quite amusing! I was having to work hard to convince people that they wanted to take a stuffed animal out with them places and take photos of it ‘pretending’ to be on an adventure (people thought I was a bit nuts), so I set up twitter, instagram and Facebook profiles, as well as an online blog for the stories, under the name ‘Out with Animals‘.
I was quite enjoying being sent photos of the animals doing fun things (and seeing what my friends were up to) and using my brain a bit to write stories- it appealed to the creative side of me that had kind of got covered in dust since stopping music teaching. Then around Easter time, a lot of people I know had holidays planned and, instead of me thrusting an animal on them and begging them to take photos, suddenly a lot of people asked if they could take an animal with them. And I’ve had some really imaginative photos from lots of people! I started using the social media pages I set up to ‘chat’ to places the animals visited- I had a lovely chat with Monarch Airlines about Lizzy the Lizard’s travel sickness from having eaten too much Easter Chocolate, I managed to get Eric the Elephant a City of Culture Badge by tweeting them about his adventures and the Kennedy Space Centre tweeted me back about Oscar the Octopus’s attempt to be the first octopus in space. Not only were the animals getting more and more adventurous- they’ve been to places all over, from Italy to Japan, but it really was helping me and my mental health. Around the same time, another charity called Help for Dominica emailed me and asked if I could send some animals over to Dominica to help with their school education and outreach programmes following Tropical Storm Erika. That was also pretty exciting, and I’ve sent 7 out there so far.
Now I’ve constantly got a ‘list’ of animals that people have requested to take out, and I’ve also had a few random strangers who have come across my page ask to be involved either by crocheting animals or because they want an animal to take out. Groups and organisations like primary schools, Scouts, Rainbows, Hospitals, the army, a mayor, and the police have asked to be involved somehow. That’s pretty cool for an idea that came out of me sitting in my PJs knitting one day in January!
Making animals is in no way filling the massive hole that teaching and having a job left. But it’s something I can do which helps other people, gives me some kind of a sense of purpose, and stops myself from hiding away and exacerbating my illness by isolating myself. I can do it at my own pace and stop when I’m having rough patches with illness. If you follow my social media, I tend to do an update before 8am when I’m doing my whole ‘here we go again….’ monologue- that’s intentional. It’s the hardest time of day for me, and even when I’ve been in hospital, I’ve still managed to post an update. It means that I can feel like I’m contributing to life even though I’m not out of bed yet and everything is really hard work. I’ve achieved something even if I manage nothing else for the rest of the day. It’s only a small thing, but it’s quite important for me to be able to do it. It’s not the same as having a career, but I enjoy doing it, and it’s a lot better than giving up and letting my illness take over completely. If nothing else, I’m proud of myself for that!