What it is like Living with a Chronic Illness

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

six silver spoons

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength
Debs Random Writings
Twin Mummy and Daddy

20 Comments

  1. January 16, 2019 / 12:43 pm

    I admire your honesty and fight. Thanks for keeping it real.

  2. January 16, 2019 / 2:07 pm

    I will refrain from saying anything much, as it will sound trite, Anne. Deeply moved. Hope something eases for you and you get some relief and release. Love yiur observations and your writing

    • January 18, 2019 / 10:41 am

      Thank you Enda, I think you said enough to make me smile 🙂

  3. January 16, 2019 / 5:19 pm

    You really are a complete star. Never feel bad, you are amazing. My counsellor taught me to accept that sometimes you can’t do it just now. Build ‘me time’ into your day/week/hour. Some days you need a break and it is what keeps you sane – mental health time. 4 hours of Dr Who probably did you the world of good – as long as it wasn’t Sylvester McCoy…

    • January 17, 2019 / 11:34 am

      haha no it was David Tennant 🙂

  4. January 16, 2019 / 9:25 pm

    I can only imagine that degree of shock and pain. It’s just a coincidence that I talked about collecting spoons in my reply to your comment, but weird. That’s a good visual and I’m glad to be able to share your day.

    • January 18, 2019 / 10:40 am

      Yes, the spoon theory is a clever way of explaining and has really caught on.

  5. January 17, 2019 / 8:49 pm

    One of the hardest parts of chronic illness is admitting you can’t do it all and have to slow down. I think you are pretty amazing, your positive attitude always shines through in your writing. I hope you have had a much better week this week x

    • January 18, 2019 / 10:38 am

      OH yes, there is so much I want to go, so much I have to do, and so little I can do. It is hard to come to terms with x

  6. January 18, 2019 / 10:35 am

    I like the fact you have admitted it got too much for you. Then again, you rested, watched Friends and Dr Who and bounced back. We all need to rest from time to time. And you are right, it is difficult to watch a family member who is ill. Then again, we all need to be mindful and have empathy for what it must be like to live with a chronic illness. Keep polishing those spoons. Thank you for the insight.

    • January 18, 2019 / 11:04 am

      It is hard for me to accept that I need to rest, but I’m getting used to it. Thanks for your comment.

  7. January 19, 2019 / 8:28 am

    A truly honest post and well done for taking a rest. Hope something can be done to help improve your condition Thanks for linking to #Thatfridaylinky hope to see you next week

  8. January 20, 2019 / 6:58 pm

    You really are a star Anne! I think you do amazingly well, even if it doesn’t feel that way at times. I know all too well with having pulmonary sarcoidosis, how it feels to feel like total shit with no relief. Luckily for me, it has gone into remission, so I have had a break unlike you.
    You keep on winning Mrs, you are a true inspiration. 🙂

    Thanks for sharing with #MMBC. x

  9. January 21, 2019 / 12:25 pm

    I feel and hear you. I often wish I had a broken leg that others could relate to then they’d realise that I can only do what my body allows me to do. SOmedays I race off and do things, knowing I will suffer the following few days, the cure apparently is to go to bed, but with neck damage and migraines, if I gave into the chronic pain, I’d do nothing, ever #blogcrush

    • January 21, 2019 / 12:42 pm

      I’m sorry you are suffering too. I know what you mean though, although my illness is visible, my family still take it for granted that I can do as much as I used to. It’s only when I drop that they realise, then I get berated for doing too much! x

  10. January 21, 2019 / 4:00 pm

    Hi Anne, I love the spoon analogy, very descriptive. It must be hard enough facing each day with chronic illness without feeling you have to positive all the time for the sake of other people, but I am a great believer in trying to see the positive in things and doing it with a smile. That doesn’t mean not having bad days or taking time off to just ‘be’… The chap who started the walking group has deteriorating health and watching him struggle brings it home how life can change in a short period of time. He has bad days and worse days now, rarely good days and knowing it’s not going to get better is a hard pill to swallow… I admire your honesty and the way you write about your illness with no self-pity and I do keep my fingers crossed that, one day, they find a cure for yours and many other chronic illnesses out there.

    Thank you for popping by and sharing your story with #keepingitreal.

    xx

  11. January 23, 2019 / 10:28 am

    Oh this really resonates with me. I know I’ve mentioned it to you before that I had a chronic illness for 6yrs (but recovered despite being told it was highly unlikely). But it’s that constant day-after-day stuff that really drags you down, when you know there is no end in sight. But you absolutely have the right attitude – rest for a time, but don’t allow yourself to wallow – life is for living (in whatever form that takes) so make it the best version it can be. Sending much love #blogcrush

  12. January 24, 2019 / 6:46 pm

    It certainly sounds like you are in tune with how it affects you and what you need in order to get back to some sense of feeling better again. I’m sure in sharing your experience you are helping others. #MMBC

  13. January 26, 2019 / 6:50 pm

    YOU ARE AMAZING ❤️
    #BlogCrush

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A little Note About Positive Reviews on Raisie Bay

A little Note About Positive Reviews on Raisie Bay

Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I’ve also seen negative feedback with say things like, I had to return this item because the colour did not suit me…is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I’ve loved. If I don’t love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It’s always the latter.

This is my blog, my place and I’ll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.