Living well with a chronic illness like Lupus.


Having any chronic illness can be a trial and is, obviously, viewed as negative! Whether you are watching a loved one battle or you are struggling with a chronic illness it can be a hard lonely road! Is it possible to live well in spite of illness? I hope to show ways it is possible and maybe help you to find sunshine in the rain.

Living well with a chronic illness like Lupus! It sounds like an oxymoron doesn’t it? But it is possible it definitely takes effort to change your thinking and patterns of behaviour and it can feel almost silly at times but the pay off is worth it! You become easier to be around for yourself and others and life somehow opens up to you once again, albeit different than before!

So how do you get to this better balance, where you acknowledge your illness and its limitations but it doesn’t define you? It’s not easy and I believe there is a period of mourning and acceptance to go through! Mourning for your ‘old’ self and life. I used to run, I loved it as a stress reliever and it was my happy place… I wasn’t fast or particularly good at it but I loved it! I ran the London marathon and power walked several marathons for a breast cancer charity… I can’t do that anymore!

I used to be someone who rushed around got sh@t done! I was helpful and reliable … then I became unreliable and slow! It didn’t happen overnight of course but there became a point when I realised that person was gone and how wrapped up my identity was in being helpful, productive and ‘useful’. There was a period of mourning and acceptance before I could move on and reinvent myself!

One thing to realise is although you feel your body is to blame and is faulty, it is far better and more helpful to view your body with compassion! Your body is literally doing what it can it is trying to function and it is managing to but not like before! Have gratitude for what it can do.

Learn to let go of the old and make room for new! Maybe you aren’t well enough to ‘do’ much but you can let your compassion and appreciation of others shine through! You could be that listening ear someone so desperately needs, or maybe you can snuggle up with your partner/children and watch a movie when if you were well you might be too busy! You really can get good at looking for the little things which can mean an awful lot! I had a lovely older friend who was chronically ill and she couldn’t entertain as she used to, cooking amazing curries having loads of people around at once, being the matriarchal hub of our circle… however she would still love to see people and chat and offer advice. Sometimes you would go over and end up helping her cook, sometimes you would make a coffee and sit and chat with her in her lounge, sometimes she would welcome you from her bed and you’d chill there chatting! She was able to keep the essence of herself despite her illness.

Don’t blame yourself for being ill! You, likely, can’t help it and it’s not going to help you to apportion blame! Our self-talk is so important! Think about how you talk to yourself and compare it to how you would talk to your best friend! Be encouraging and affirming, the chances are you are doing the best you can and you are probably constantly researching and trying new ways to live and function better! After all you found this article so I can tell you are not just accepting being ill, you are looking to be the best version of yourself you are doing your best… be your own cheerleader however silly that feels!

Forgive yourself if you do something that doesn’t help your illness! You can’t be perfect and yes sometimes you will stay up too late. over do things and end up feeling worse for a few days or so! It will happen its part of living with a chronic illness.

Forgive others, they will let you down sometimes, they will lose patience with you, they are also human! However if someone is constantly putting you down and questioning your illness and generally being very negative towards you try to educate them otherwise let them be, they don’t understand and it’s not your problem!

Don’t worry about other people’s opinions on your illness! Even if someone has the exact same illness as you they aren’t you so it will be different!

Remember to be thankful to those around you who are helping you and just loving you! Maybe you can’t repay them how you would like to but you can be thankful and gracious! Being ill doesn’t give you an excuse to be rude or demanding! It can be hard to smile and an effort to be nice when you just feel so rubbish but you will feel better for it and so will your loved ones!

The overriding message is to be loving to yourself and to others! Dish out compassion and respect to yourself and extend it to those around you!

But what else can you do to help yourself on maybe a more practical way? I picked up this book, Despite Lupus by Sara Gorman! She has some great tips for living well despite your illness. She looks at getting the best out of your doctor’s appointments, asking for help from others, really looking at your symptoms and tracking what works for you and what doesn’t. She advocates being proactive and learning how your illness affects you and how best to limit its impact on your life!

I found tracking my symptoms helpful, I also tracked what I was doing so I could see if there was a pattern. I looked at my sleep habits and what I was eating, sugar affects me badly as do diet sodas! I found that I slowed down and instead of rushing through my days, in my head as much, if not more than physically, I started to evaluate and observe myself and then troubleshoot! Being clearer-headed helped me to put in place things like a regular yoga practice, only 15 mins most days but it helped me physically and mentally. I started to carve out rest times… maybe not to sleep but just relax, taking those times meant I could be more productive! I planned ways to feel comfortable and safe on the days where I truly felt too awful to do much at all! I create a ‘nest’ to settle in where I feel safe a comfortable and I can rest! I use a body pillow on my bed and a weighted blanket, I can’t usually watch t.v at those times so I listen to music and feel at peace.

I like to look groomed so I devised a minimal makeup and hair routine that I could easily do even if I was feeling awful, on other days I do a bit more but at least I feel put together on bad days too. I also have paired down my wardrobe and have outfits that are comfortable and I like wearing for rough days and outfits that take a bit more effort when I want to make that effort!

For you, this might not be important at all, you might hate your house being messy and you might carve out a routine and help to manage that aspect! I have a routine in place that way if I can’t do it I know what to ask someone else to help with if they ask. I would also look into getting a cleaner if I needed to or at least aids like a dishwasher, easy to use hoover, washing machine and tumble dryer…  I get my grocery shopping delivered so I don’t have to expend energy walking around the supermarket, and I have a shopping list and menu saved if I am too poorly to be on the computer for too long!

It is truly like you need to work your illness like a job! It really helps you feel more in control and less at the mercy of your illness. Even small steps will help and I have found that as I managed my illness better and worked to find ways around it I actually felt better, I coped better with the pain and tiredness and I felt less depressed. I had a focus and a purpose, I started to be nicer to myself and those around me… I found my smile again.

Being chronically ill sucks, I mean it can literally suck the life out of you BUT I do believe it is possible to regain some control and live your best new life, find new ways to express yourself and add value to your life. Sometimes it can feel selfish to take time out to rest or to spend money on a cleaner or appliance to help you but it isn’t if it means you can feel a bit better, be more productive and just be your awesome self every change, every expense, every nap is worth it because you are and so are those around you. xx

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