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

 

 

 

11 thoughts on “What’s it all about, Alfie?

  1. Glo

    Thank you! Such a good way to look at things. This has made me count up the things I do and see them as something useful and needed. You are a wonderful inspiring person.

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  2. Beth

    .thank you, you always write what I need to hear and can never put into words myself, followed your blog for years now and I can’t tell how much you’ve helped me, especially since I have continued to deteriorate, (Severe M.E) I always look forward to your posts and they help me deal and process everything in a way no one else could, want to express my love and gratitude in a non creepy way but this is all I got

    P.s LOVE your pictures

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    1. Jak Post author

      Awww, that comment has made my day Beth. So very sorry to hear you are continuing to deteriorate – severe M.E. is indescribable to anyone who doesn’t have it. Sending big hugs to you xoxo

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  3. Elaine Stammers

    I think you have done a lot more than ‘OK’ in your version of a meaningful life Jak! Furthermore, given that you only spend 6 hours upright, then what you do is quite astounding. It’s clear that much of the time you are pushing the boundaries in all areas of your life and suffering a lot of pain and exhaustion while you are doing it. I think that yours is the only blog I read consistently even if i don’t post much – first drawn to it by your writings on histamine which I was exploring at the time, and then discovering other issues on the blog that I also shared if not in such an extreme way.

    As a further aside I wanted to ask you about the knitting/crocheting that you do for charity, and I have wanted to do the same for a while as I have loads of yarn accrued in odd balls. I looked into the charity that you support in Africa re knit-a-square and struggled to find the info about posting though I did I think find it in the end. There’s a lot of info on the site, but not much about posting details that I could see. Do you post yours off there by Royal Mail? Does it work out very costly? I did look up and see that there is a cheaper rate if it goes more slowly.

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    1. Jak Post author

      Thanks for the kind comments Elaine 🙂

      Re posting to the knit-a-square charity, if you click on the front page, then click on the circles numbered 1, 2 and 3 it tells you everything you need to know.

      I post several items in a jiffy bag via royal mail and it costs me around £9 via land mail. As well as squares they also accept beanie hats, hand warmers and knitted toys – there are various patterns on the site x

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      1. Elaine Stammers

        Thank you so much Jak for that info. Ah yes, now I see that you can click on those numbers – duh! hadn’t noticed that!! Blame the foggy brain and worse than usual this week due to fighting a cold….x

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  4. danieljuk

    I think you are right about finding meaning in life Jak or it is just too awful! I mean a meaning that we can manage at the time. I have had horrible mental health the last 2 months and trying to find the tiniest positives in the day, like in nature or the sunset. I have found in the past that looking at small details positively takes your mind off a lot of negative thinking. But also I have noticed since losing a dog that although I am no longer mourning, I miss the obligations or responsibilities in my routine with him. With him we had 2 cats at the start and this is the first time there hasn’t been a pet in the house since 1993! I am really missing responding to a pet’s needs, especially when I am by myself! The good news is we are looking for a new dog but huge arguments / debates about our next dog 🙂

    But I think finding the meaning is really a way of distracting us from our regular day, I notice this a lot in my life. Our hobbies and interests that we love and our pets give us some respite from the regular day ❤

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    1. Jak Post author

      Had no idea you’re having such a bad patch Dan – biggg hugs. I know exactly what you mean about missing your pet’s routine etc. I thought when I lost my last cat I wouldn’t get any more pets, as they are a burden at times and really hard work to look after when you feel really poorly. However, I missed having structure to my day so much, as well as obviously missing the company, that 2 weeks later I got Bert! Really hope you can all agree on your next dog soon – I can totally vouch for mini Schnauzers 😉 xoxo

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