Tag Archives: meaning

What’s it all about, Alfie?

I can’t believe I’m going to tackle the meaning of life at 7am on a Wednesday morning before I’ve even eaten breakfast and with severe brain fog, but I like a challenge 😉

Most of us spend our lives searching for meaning and purpose.  It’s so easy to trudge along on the treadmill of existence, repeating the same steps each day yet going nowhere, and in the blink of an eye we’re 70 and wondering what our life has all been about.  I’m sure that’s why most people have children – to give their life meaning – while others are married to jobs or causes.  It’s difficult enough to find a reason for existence when we’re healthy, and a different kettle of fish altogether when we’re ill, having a family is out of reach and we’re unable to work or take part in society as healthy people do.

When I was bedridden with M.E., lying alone in solitary confinement for 23 hours each day for years on end, I had to find some meaning to my life or I might as well have just topped myself.  I’ve always had rescue pets and at the time I first became ill I had a cat, Pudding.  He needed me and without him I had no reason to stay alive – he saved my life on more than one occasion.

After a couple of years I joined an online M.E. support group and eventually became involved in the running of the group and its website.  Sharing my story with other sufferers, particularly those new to the disease, gave purpose to my suffering and it’s something I’ve done ever since – if I can help just one person not to feel alone then the effort involved is worth it.

Over the years I’ve written several articles in charity magazines and my story has appeared in the press.  I try and educate whenever I can because there is so much misunderstanding and lack of empathy for people with not only my diseases but chronic, invisible illnesses in general, and that can only be changed through education.

I’ve also taken part in various research projects so that hopefully people with my diseases in years to come won’t suffer the way I’ve had to.

I can both knit and crochet, so for all the hours I am forced to spend in bed I make items for charities, particularly the knit-a-square foundation in Africa.  Helping others less fortunate than myself is a reminder to count my blessings – I may be sick but at least I’m not an orphan with AIDS living next to a public sewer in a shanty town in the baking heat and surviving on less than $1 a day.

Photo of crocheted children's vestsWhen my last cat died, and I had started to improve somewhat from M.E., I took on a rescue dog instead!  Abandoned animals are out there in their millions waiting for a loving home, so it’s a win win – they need me and I need them.

As I entered my forties first my Mum got really sick and then my Dad, so I was forced to take on the role of Carer.   It’s not something I would have chosen but I didn’t hesitate because I love them and it gave my life new purpose.  It’s not been easy and can be really stressful but they spent years looking after me when I was really poorly and now it is my turn to look after them.

In my late forties I discovered photography.  It’s really the only thing in decades I’ve done solely for me rather than to help other people.  Having any kind of creative hobby feeds the soul and for the first time in years I woke up excited for the day ahead.  I now also give back, teaching as a volunteer and sharing my passion for photography as a guest speaker.

I’ve also, over the years, provided employment for 9 people as either cleaners or dog walkers. And while it’s tempting to think of ourselves as burdens on the NHS and social services we also help provide employment for doctors, nurses, social workers, OTs, physios and all the other people involved in our care not to mention the companies from whom I buy equipment, aids and adaptations – yes we need them but without sick people they’d all be unemployed, let’s not forget that.

I was bedridden for a decade and still spend 18 hours of every day under the duvet.  It’s easy to think of myself as useless, a burden and unable to contribute to society but that’s not the case.  I possibly have time to contribute more to society than someone with a couple of kids who works full time!  The biggest stumbling block is society’s view on what constitutes meaning.  If earning shit loads of cash and popping out a couple of mini me’s is what makes a life successful then I’ve failed miserably.  If educating, advancing research, helping others, caring for the sick and elderly, looking after abandoned animals and sharing passion through art is what constitutes a meaningful life then I think I’ve done OK.

To pinch a recent quote from my friend and fellow blogger over at Musings of a Dysautonomiac

It is here that we encounter the central theme of existentialism: to live is to suffer, to survive is to find meaning in the suffering.” – Viktor Frankl




Chosing joy

I’m a bit reluctant to write this post.  On my really bad days if anyone says to me it’s not the situation but the reaction to the situation that’s important I want to poke their eyes out with a blunt stick.  You cannot feel joy when you are sleep deprived, in relentless pain and sick to the very pit of your stomach, or when you can’t pay your electric bill.  You are miserable and rightly so.

Having said all that, I’m happier in my life now than I have ever been so I wanted to share with you why that might be, bearing in mind most people would say my life pretty much sucks.

After 6 years of being bedridden with ME I just stopped fighting it.  I stopped looking for the non-existent miracle cure, I stopped being frustrated, I stopped yearning for my old life.  It hadn’t helped and just made me depressed on top of already being sick as a dog.  Instead I accepted I would be horrendously ill for the rest of my life, however short or long that may be, and started trying to find some joy in each day. If I was going to die I didn’t want my last days/months on earth to be crap.

I started playing the “what if this were my last day on earth” game and now I play it every day.  If this were my last day to be alive  I would be ignoring my sickness and my pain and I would be relishing everything – a beautiful sunset, my best mate ringing for a chat, a cuddle from my dog, a soak in a hot bath.  If this were my Mum’s last day on earth I’d relish her voice, her smell, her friendship, her little mannerisms.  Try it.  It really makes you appreciative.

I also needed a purpose, some reason to open my eyes every morning.  So I volunteered for an ME charity from my bed and volunteered to help with an online ME support group.  I could only do ten minutes here and there but I felt I was contributing to the world and helping other people through my experience of chronic illness.  My suffering stopped being meaningless and started being meaningful.

As far as was humanly possible I stopped dwelling on the negative.  I stopped listing in my head all the things which were wrong and started listing all the things which were right.  Every time a negative thought came into my mind I replaced it with a positive: I’m in pain became I’m thankful for my hot water bottle.  I’m lonely became I’m thankful for my dog.  I’m skint became I’m thankful for my beautiful home.  I feel dreadful became I’m thankful for my peaceful country, my peaceful home, my security – can you imagine being sick in Syria or the Congo?  It works much of the time and the times it doesn’t I allow myself to wallow in self pity – it’s impossible to be thankful when you have your head down the toilet vomiting.

The other thing which has helped enormously is to live in the moment.  It’s a much over-used phrase but really stop and think about it.  My biggest fear is having a reaction to something I’ve eaten, and I have to eat at least 3 times a day.  That’s a lot of anxiety.  When I start to feel panicky about an upcoming meal I tell myself this “are you having a reaction now?  No.  Enjoy the moment.  Will worrying yourself stupid about having a reaction stop a reaction from happening?  No.  So quit worrying.  And if you have a reaction you’ll cope.  You have before.  It will eventually settle.”

When your life is literally down the toilet it’s easy to play the “when x, y or z happens I’ll be happy” game.  When I lose/gain 20lbs I’ll be happy.  When I find Mr Right I’ll be happy.  When my pain is under control I’ll be happy.  When I can eat chocolate again I’ll be happy.  When I’m over the menopause I’ll be happy.  When I’m well I’ll be happy”  And all the while your life ticks by and you’re miserable.

I have a friend who has a well paid job working in the one of the most beautiful places on earth.  She has no responsibilities: no children (she never wanted any) and her parents live 300 miles away so she doesn’t have to take care of them.  She works from home so no soul-destroying hour long commute on a packed underground train and, although she does travel a fair bit with her job, it’s in the Lake District with some of the most beautiful scenery in the country.  She is (apart from a few minor niggles) healthy.  She has 3 months of holidays a year, where she takes off to the wilderness for total peace and tranquility surrounded by nature and wildlife.  Most people would kill for her life yet she is depressed and constantly asks me “what’s the point to it all”?  I want to shake her.  If, tomorrow, she’s killed in a car accident or gets diagnosed with terminal cancer her last 5 years on earth would have been miserable.  Why would you waste your life like that?!

I’ve found that, because I’m ill, people want to share their ill-health with me because they’re fed up and think I’ll be sympathetic.  Er, nope.  Are you dead yet, cos if you’re not I can’t work out why you’re moaning.  I’m happier than 90% of the people I know and everyone comments on how passionate and excited about life I appear to be.  That’s because I am excited about life – it’s the only one I’ve got and it fucking beats being dead.

Today is all there is.  Fill it with joy.  Fill it with gratitude.  Fill it with purpose, passion and meaning.  Don’t sweat the small stuff.  Stop worrying about things over which you have no control.  Embrace life – it’s the only one you have.