Tuesday, 21 July 2015

5 Ways To Cope When Living With A Chronic Illness

Disclaimer:  I don't mean this blog post to act as medical advice, please talk to your Doctor before starting extra exercise or making any other life changes.

Hi honeys
I'm writing this post as much for myself as to share with you.  I find myself in the position of having to sit myself down and give myself a sharp telling off.  I've been allowing stress, worry and upset to get to me. To knock me off course from where I should be, where I try to stay, namely ahead. Coping. Not letting illness & pain win.

Thing is dear ones it has been winning recently.  My Dr has increased, actually doubled, the dosage of my blood pressure medication recently and I'm trying so hard to not be stressed that it's stressing me out!

5 Ways To Cope When Living With A Chronic Illness

So I thought, in order to both remind myself and to share with you, I'd post my 5 favourite strategies for living & coping with a chronic illness without letting it win. Ever.
So here they are honeys, for what it's worth.  If you are a fellow spoonie, I wish you gentle hugs and a spoon filled day and if you're here to better understand what a friend or loved one is going through, then bless you for caring x   

1.  Concentrate on what you CAN do and never, ever on what you can't. 

It's far too easy to become lost in thoughts of what was & what might have been if only.... If only I didn't have arthritis, if only I didn't get tired so easily, if only my mobility wasn't so limited... if only, if only, if only...  We absolutely have to kick these damaging, self depreciating thoughts immediately to the kerb!  If these thoughts are allowed any room they'll take root and will rob us of any happiness we might ever have honeys. 

These negative thoughts simply can't be allowed to control us.  Easier said than done I know, but they have to be beaten in order for us to live the fullest life we can.  Years ago, when my health had prevented me from working for some time, I decided that enough was enough. I needed & desperately wanted to go back to work.  I was lonely, hubby works long hours and is away from early mornings till around 6pm each day, and I was unhappy.  

I had trained as a paralegal, a legal secretary, and indeed had always loved my work.  I had worked primarily in the field of conveyancing, the buying and selling of property, and had always adored that each letter I typed brought someone closer to owning their own home.  I knew though that I couldn't go back to this.  My hands had become so stiff and I had such pain in my hands, and elsewhere such as my spine, that I would never have been able to match my former typing speed for instance. 

At first this realization thoroughly flattened me.  I thought if I couldn't do the job I'd trained for, I wasn't worth anything, there's that negativity I was talking about.  I sat down one afternoon and I made a list of other things I'd done.  I'd had temp jobs through agencies while I was at University for instance and one of those had been working in a retail environment. I had been so happy there! There it was then. 

I decided I would look for a job in retail. It took me around three months of applying, and dealing with rejections (some of them terribly rude, it's amazing what some potential employers will say when faced with someone who needs a cane) but I did find a job with a large retailer, where I still work very happily to this day.

I had concentrated on things I could do, such as communicate easily with people, I'm very much a "people person" and I choose to ignore the things I could no longer do, such as extra speedy touch typing :)  This opened doors dear ones, maybe not the ones I might have expected, but I've been really happy and that's priceless.

2. Maintain your interests & hobbies

You are so much more than a collection of aches, pains and symptoms, honeys. It's so easy to think this way when sometimes the only outside contact we have is at the Doctor's surgery or at hospital appointments, but you mustn't allow it! You are amazing because each day you face challenges and you get the better of them, you don't let them win.

You are a person with interests and passions.  These interests are what makes you an individual.  Refuse to let go of them. Are you a gardening enthusiast? Why not lend your skills to a local horticultural group or apply for an allotment from the local council and then grow your own veg?  On a smaller scale why not grow a wonderful collection of herbs on the kitchen window sill?   There are so many local groups & clubs you could join. Are you a fan of history? crafting? reading? why not look for a local book club?  Do you enjoy gaming? There are online gaming groups now.  So many choices that offer opportunities to continue hobbies and interests.

Not a fan of joining clubs? that's fine too.  In these days of the internet there are so many online resources that allow you to follow your hobbies.  Are you a knitter? Do you crochet? Cook?  Head to Pinterest for a truly inexhaustible supply of patterns and recipes to try :)  I adore history and recently have been loving that YouTube have lots of history documentaries to watch, and of course I'm currently reading my way through the latest additions to our home library :)

Living day to day with a chronic illness can be very isolating honeys, it can rob us of any pleasures we have in our lives. Don't let that happen dear ones, find a way to stay the wonderful, unique, amazing person that is you x

3. Move more - even when it hurts a little 

My dear Grandmother believed absolutely in the tenet or principle of "use it or lose it."   For instance, If we suffer from chronic pain the first reaction is usually to try to avoid anything that might cause us pain so we stop doing anything that hurts. However, if we avoid moving around because it hurts to move, our body's joints will increasingly stiffen or muscles will weaken and it will become even more painful to move.  It is truly a vicious circle.

Years ago, while at university I used to run everywhere, I was always on the move, now I can't walk to the end of our street without being in awful pain.  It would be so easy to just say to myself well I can't walk very far, I'll never go outside again, that's my lot in life so I'll settle on the sofa and be a "couch potato", but that's giving up, that would be admitting defeat and I'm too stubborn to do that :)  

I can't walk any distance but I do make sure that I stay on the move.  I find excuses all day long to move.  I'll walk to the kitchen where I'll wipe my worktops down or I'll let Jade, our furbaby, out into the garden and make admittedly pathetic attempts to throw her ball for her, it's ok, she knows her mummy can't throw but she seems to love me anyway :)

My limited mobility might make things a little challenging but the rest of my life is at the other side of that hurdle so it needs to be gotten over.  Our nearest bus stop is a good 8 - 10 minutes walk - for a healthy person.  Even if I were able to do it, it would take me much longer.   We don't own a car & I don't drive anyway even if we did.  So, this hurdle I cope with by having a local cab company take me to work and bring me home again.  I work two shifts a week and yes, cab fare makes quite a dent in my tiny salary but it allows me to work and that alone makes it so worthwhile.

My job helps me to maintain my level of mobility.  I work at a checkout and this does require me to move frequently. I use my hands, typing codes into a keyboard, my arms and shoulders have to turn and lift in order to continually scan items.  I take every opportunity that presents itself to stand to avoid the swelling I suffer from in my legs & feet if I don't.  I use splints on my wrists that help protect my joints while I work but again, like my cane which helps me get about, I think of these as just tools that allow me to function, to carry on doing what I love.

I see my two shifts each week as incredibly valuable mini work outs that help to keep my muscles and joints as flexible as they can be, in spite of my health issues.  Of course my shifts are also social for me too, I look forward to chatting to regular customers and of course spending time with co-workers too, some of whom I'm lucky enough to call friends.  

4. Try to eat healthily

Developing a chronic illness can be life changing, literally.  We are forced to constantly make choices all day long.  Choices we would never have considered in our previously healthy lives.  This concept is illustrated beautifully by the wonderful Spoon Theory written by Christine Miserandino.  If you haven't read it honeys, please do go to her website and read it here.

So, we make choices of how to use our limited resources of energy, but if we also have limited mobility, and so are less able to burn off the calories from our food, we also have to make changes to our diet.  Sounds easy, but again there can be difficulties in this that are not faced by non "spoonies." 

Do you remember I mentioned the isolation so often faced when chronic illness robs someone of their job, their regular routine, hobbies, interests and social interactions?  This can often, understandably, lead to low mood or more serious forms of depression. There is still, unfortunately, a stigma attached to depression or any mental illness.  In a perfect world this would not be the case.  It is unfair and acts as a barrier to asking for help.  Don't let others opinions ever make you feel badly about yourself dear ones, I did that for too many years.  No one has the right to judge anyone else, ever.  If you do feel low please go tell your Doctor?  It can be wonderful just to talk to someone about it and your Doctor can, and will, help.

It isn't always easy to make the right food choices when also trying to cope with the sort of enforced isolation caused by living with a chronic illness.  In fact it's very easy to "comfort eat."   My comfort food of choice is chocolate I'm afraid.  I actually use it to judge my mood after all these years.  If I'm craving chocolate then I know to stop, sit down for a minute and take stock.  Something is upsetting or stressing me.  I have to admit I'm still struggling with this one honeys, but Hubby and I do eat far more healthily that we used to.

I cook from scratch (and love it) rather than order take out food, I actually can't remember the last time we had take away :) I've swapped us over to a more veggie based diet, with Hubby's agreement of course, bless him.  We always have lots of fresh fruit at home and junk food is just not on our shopping list.  We eat oily fish such as tuna or salmon at least once a week (with fresh steamed veggies and brown rice... yum!) I use olive oil where we used to use vegetable oil, and I'm constantly looking for healthy eating information on Pinterest

No one is saying never eat chocolate or ever go near a chip again, I think I'd cry if anyone did :) but  spoonies need all the help, all the nutrients from our food, we can get.  We often take drugs that suppress or affect our immune system, we are often anaemic (low blood iron) or just feel run down and lovely fresh fruit & vegetables in our diets can make such a difference, they can help to boost both our mood and energy levels.  It really is a win, win honeys.

Last but by absolutely no means least is.....

5. Be kind to yourself

This is where we go back to that awful, damaging, negative self thinking honeys.  It's so important to stop this in its tracks the moment it starts.  We need positivity in our lives dear ones.  We need to feel optimistic about our future and that can be incredibly difficult when trying to cope with pain, lack of sleep and maybe even a lack of understanding by our friends, family members or work mates.

It takes practice, a lot of practice, to adopt a positive mind set and hold onto it no matter what but it's so worth the struggle to get there because positive thinking will support you through all of the ups & downs we have to cope with.  It won't make them any more pleasant to face but it will give you strength to face them honeys.  Speaking of strength, many of us are lucky enough to have wonderful supportive people in our lives. Why not tell them how much they, and their support, mean to you.  It will feel great to make someone else smile and smiling is so infectious you'll smile right back :)

Do one thing, at least one thing, every single day to make yourself smile.  Listen to your favourite music, phone a friend, read, potter around in the garden or play with your pet. Our baby Jade adores hugs and she has a mummy who adores hugging so yaaaaaay! 

Find something that is all yours honeys, something that makes you happy and use that as a treat for facing the challenges that life throws at us, for managing to get through the day or just because :)

You deserve to be happy, to smile every day and to laugh at the ridiculousness of life now and again :)  A customer at work recently, on seeing my cane folded at my checkout, asked me if someone had wandered off without their cane.  The look on his face when I said it was mine was marvelous :) I grinned all through the rest of my shift because it obviously means I don't look as ancient or as  rickety as I sometimes feel :)

I hope you're having a fabulous day honeys, full of smiles and hugs, here's a huge hug from me <<<<<<<<<hugs>>>>>>>>>>  Till next time dear ones, love always xx


  1. Great post Rosie! I agree with it all, particularly 1 and 3. xx

    1. Thank you honey! I'm so sorry! I've only just found this comment while tidying my blog, I don't know how I missed it :/ I seem to get more done on my more ouchy days because I know that to keep moving helps (mostly) prevent the pain from becoming worse. Keeping busy also helps take my mind off the pain too. Hope you're having a fab week honey, sending heaps of huggles xxx