Self care with friends who inspire me: Part 1 – Learning to live with lupus

Pretty much all of my blogs so far have been about my experience of living with Parkinson’s. However, it isn’t always about Parkinson’s and it isn’t all about me. For self care week – which starts today – I have written a series of blogs about self care when you have a long term condition. To do this, I enlisted the help of some very special friends who all live with different long term conditions and who all inspire me by the way that they do this.

First up is Karen

I’ve been friends with Karen since we were at school together many years ago. Karen is extremely kind, caring and loyal. She is also one of the most inspirational, resilient and bravest people I know and I am so grateful to call her my friend.

Karen was misdiagnosed with ME at 12 years old and was in and out of hospital during our school years. She was diagnosed with lupus aged 17.

I spoke to her recently to find out more about living with lupus and what self care means to her.

Lupus is an autoimmune disease, where your immune system attacks healthy parts of your body. Lupus can affect any part of your body. And like Parkinson’s, it affects different people in different ways.

She explained that her biggest challenge was several years ago when she started walking again after not being able to for some years.

Another challenge is the unpredictability of the condition. She cannot easily make plans as she does not know how she will feel each day. Some days she can feel almost normal and others she can be in severe pain and unable to do anything.

The severity of her condition also means that she is extremely susceptible to any infections and was on the ‘shielded’ list of people during the peak of the Covid-19 pandemic. This was also a very challenging time for her.

But being the strong, brave and resilient person that she is, she somehow copes with all these daily challenges. I asked her how she does it…

Coping strategies and self care

Top of the list when I asked her how she copes with every day life with lupus is her beautiful dog, Poppy – who she says helps her so much and gives her a focus.

Poppy


One of the most difficult things she’s had to learn in order to take care of herself, is learning to say no to people and more importantly not feeling guilty about this.

Like many of us, she finds watching TV helps her to switch off.

She has learned to take all of her medications* every day instead of thinking she doesn’t need all of them. *about 20 tablets a day. And I thought my previous 10-12 tablets a day was a lot.

She finds not planning too far ahead helps as well.

She told me that she really values all the support she receives from her family. Being around people who understand helps a lot too, so you don’t have to keep explaining yourself.

One thing Karen talked about – which I think applies to lots of us with various conditions – is accepting her limitations. Which is absolutely not the same as giving up or not trying hard enough.

Finally, I could hear the smile in Karen’s voice as she told me that she had recently discovered a RHS garden near her and loved getting out in the fresh air in such beautiful surroundings. Here are just some of the beautiful photos she shared with me:

Photos taken by Karen

Thanks so much to Karen for sharing your remarkable story.

For more information about lupus visit https://www.lupusuk.org.uk/

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