Learning to live with an invisible illness: my battle with MSK

I’ve wanted to write this blog for a long time but finding the words to explain something that has literally changed my life hasn’t been easy but, here goes…

The best way I can think to describe Medullary Sponge Kidneys (MSK) is, imagine a piece of natural sponge, the way that looks, well, that’s how my kidneys look.


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Because of these holes it means I am also riddled with calcium deposits, or kidney stones. This then leads to increased risk of urinary tract infections (UTIs) and Kidney infections, which can lead to sepsis and death as worse case scenarios. MSK also causes chronic pain in the lower back and can lead to Kidney failure.

My MSK journey started in my last year at uni. Every month I was having at least one UTI and they came on really suddenly and got bad quick. Doctors fobbed me off as not drinking enough, despite my pleas that something was wrong.

I continued battling with doctors until one day, in the middle of the night, I woke up in complete agony and collapsed in the bathroom.

I was urgently admitted to Poole Hospital’s urology ward, where I was finally diagnosed. I was put on low dose antibiotics to control infection, which I take once a night for the rest of my life and I regularly have blood taken to check my kidneys aren’t failing. Eventually I was also referred to a dietician who broke the news that my meat loving self would have to be more vegan.

As well as being a ‘part-time vegan’ I also have to eat a low sodium/salt diet and need to avoid refined sugars. Alcohol, however, is fine; a small win. I really struggled at the start, many foods low in salt are high in protein. However, practise makes perfect and eventually it became easier.

Since changing my diet (and sticking to it) I’ve found I get infections much less frequently and even the back pain is essentially gone. However, I’m still learning the things I can and can’t do and how to manage my condition.

I went to Greece with my partner last summer and whilst there had a UTI. I carried on taking my medicine but towards the end of our first day we agreed I needed to see a doctor as I was struggling to walk and was bleeding when I went to the toilet (sorry TMI). But getting a doctor to come out was going to cost a couple hundred euro and we didn’t have that kind of money so instead the hotel recommended we go to the hospital. What I haven’t mentioned was that we visited Greece during late June 2015, you know, when money just didn’t exist within the country? We entered the hospital and it was like one of those zombie apocalypse films. It was deserted, many of the lights weren’t switched on and it was eerily silent. Eventually we found someone and I was given stronger antibiotics.

I struggled along, hoping the antibiotics would work. They didn’t and on our last day I became delusional, my temperature rocketed and I couldn’t move. Finally, it was time to get on the plane and head home, it was the longest three hours of my life.

We landed and drove to the closest hospital where I stayed for a week while they managed my severe kidney infection and temperature of over 40 degrees (that’s over 104 Fahrenheit). Before being discharged I was warned about the seriousness of sepsis and how close I’d come.

In hindsight the heat of Greece, combined with the high salt and protein food, it’s no wonder the infection took hold and I realised how important it is that I drink plenty and eat right if I want to carry on doing these things. I’d also never go away without backup antibiotics now too.

The other part of my condition I’m slowly learning to manage is exercise. I’ve always been an active person so when I realised that exercise was making my back pain flare up and triggering infections I feared I would never be as active again. However, recently I’ve been slowly introducing it back into my life, building my workout each month. I’m now training to do a 5k run for charity in July, something I didn’t think I’d be able to do again.

But the one good thing that’s come out of all this is I’ve really learnt a lot. I’ve learnt that being vegan is actually super yummy. I was terrified at first, thinking I’d miss meat and struggle to cook without it, but actually I find I rarely miss it and vegan cooking is not only simple but introduced me to a lot of things I wouldn’t have tried otherwise.

The other thing I’ve learnt is to listen to my body, it’s taken a long time but I find I’m healthier now I know my limits and know when to take care of myself. It’s not been easy, and it certainly reminded me that no one is invincible but I’m getting there. It’s changed my life but I refuse to let it change me.


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