"Can you eat that? Should you be having that? Is that ok for you to have? Does your doctor know that you’re having that? I hope you don’t treat yourself too regularly?
Annoying isn’t it? And how many of you get asked these same few questions more than you get asked how you’re doing and what you’ve been up to?
As a very, very grateful recipient of a kidney and pancreas transplant just over six months ago, these questions are all too familiar to me. Even now post-transplant, I get asked or subjected to a whole host of questions at any one of my three meals a day. I know fundamentally it’s because people care, but gosh, after living as a Type 1 Diabetic for 18 years and with Chronic Kidney Disease for two, I think I’m the best judge when it comes to knowing what I can and cannot eat.
It gets to the point where you actually start to dread eating meals with people because you’re worried that the only thing you won’t be able to bite is your tongue; at the risk of offending another questioning, ignorant human being about your supposed Diabetes appropriate diet.
Food is a massive part of our lives, culture, socialising and topic of conversations, it’s a shame that we feel that we can’t enjoy it.
Don’t get me wrong, there are food restrictions when it comes to living with and managing Diabetes and Chronic Kidney Disease, just as there are living a post-transplant life, but not to the extent that eating and cooking become a burden. Food is a massive part of our lives, culture, socialising and topic of conversations, it’s a shame that we feel that we can’t enjoy it. I think a lot of it comes down to how we choose to view the situation. I made the decision early on that instead of thinking about all the foods I could no longer eat, I was going to focus on the fact that I am going to having a very healthy, balanced diet- yes, I’ll have to limit desserts/sugary foods, salty crisps (my ultimate favourite), but then again, they were no good for me anyway.
I’m not saying that it’s always easy, and I’m not saying there weren’t days that I didn’t want to moan and scream at my friends, that while they’re all ordering burgers and fries, I’m having another poached salmon on a bed of salad leaves. However, at the end of the day, it’s not about not having and depriving yourself, it’s about allowing yourself to have that treat; to thoroughly deserve it, enjoy it and devour every little morsel of that burger bun; but similarly knowing when to stop. It’s about having the discipline and control to say, I had the burger yesterday, so I’ll make a more healthy choice today.
I found that talking foods, meal ideas, meal planning with my mum (she’s a great cook) and talented “home-cook” friends, really inspired me to make new dishes and experiment with flavours and sensible food substitutions. So again, instead of feeling that I couldn’t have something, I was just adapting a recipe to make it more suitable for my medical needs. This kept my food varied, interesting and creative. I went out and bought loads of spices and herbs; I went from raiding the clearance counter in my favourite clothes shops, to raiding the spice counters in my local Tesco Express and Sainsburys! The thing I struggled the most with, was salt. I LOVE salt. Or should I say ‘that I loved salt .The saltier, the better in my old pre kidney disease opinion, but not anymore. It’s amazing that in such a short time, my taste buds readjusted and instead of going for the salt nowadays, I reach for the garlic, ginger, lemon juice, paprika, chilli, cayenne pepper…..and so the list goes on.
Instead of feeling that I couldn’t have something, I was just adapting a recipe to make it more suitable for my medical needs.
As I said, I’m now just over six months post-transplant, and I’m quite sure that the enormity of the situation hasn’t fully sunk in yet. One day you get called into hospital for a transplant as a Diabetic with bad kidneys on insulin, testing glucose levels multiple times a day, carrying hypo treatment in every nook, pocket, bag, pouch and everyone else’s spare pockets, and then you wake up a few hours later, post-surgery supposedly a non-diabetic with a working kidney. A miracle doesn’t even describe my feelings of pure gratitude, disbelief, joy, appreciation and love for a stranger; my donor, someone that I didn’t know and will never get to meet, but they did this for me. They have enabled me to live this glorious life I am now living and living to the best of my ability. I am eating better than I have ever eaten, I am able to exercise more than I have ever been able to exercise and I am grateful every day that I am here and breathing. And again, however cliché it sounds, I vowed to live my second chance life the best I could for me, but more so in honour of my donor and his family and friends.
It has taken some time to adjust to this way of living. In my Diabetic days and even in my initial post-transplant days, I would miss out on social plans (especially those involving meals and food), because I always felt like a burden or the difficult one. I’d be the guest with the Any dietary requirements bit filled in longer than the menu itself; but I am now learning that there is always a compromise and a way around these situations; even if the ‘main event’ is a meal out in a swanky restaurant for a close friend’s birthday. After a bit of practice, I now have a few tools up my sleeve to ensure that I can attend, but on terms that suit me (and Patricia the pancreas and Kevin the kidney) Either I, 1. Call the restaurant beforehand and speak with the kitchen/head chef and explain my situation and ask them whatever I need to ask them, 2. I eat before I go and explain to my friend that I would love to attend but I won’t be eating because… (if they’re such close friends they will understand and support your decision as to why you have decided to eat your own food), 3. I make my own food and take it with me. If people have a problem with that, then that is their problem and not mine. I don’t even feel awkward or embarrassed anymore because I am doing what is best for me and my body. Again, if you end up missing out on social plans for the fear of the food aspect, you’ll end up getting angry and resentful due to the fact that you are missing out and there is no reason to, it just requires some planning and good communication skills to ensure that your needs are met and adaptations/adjustments are made.
I know from personal experience that when diagnosed with anything, you’re inundated with facts, statistics, do’s, don’ts, musts and must nots and it’s a very daunting position to be faced with. However, my advice would be (within reason) to find out what works best for you. It will be a bit of trial and error at the start, but find what you enjoy and what makes you happy. You won’t be able to do everything and you won’t be able to do everything 100% of the time, so do what you can and maintain it. Pick what is important to you and start there. For example, if you love bananas but have to restrict your potassium intake, still eat bananas. Not every day, and perhaps not a whole one each time, but allow yourself to have half a banana every Saturday morning.
…And remember, you will have wobbly days; you’re human, they are going to happen, but it’s ok because you’ll start again tomorrow. We have one life. We have to live it. We have to enjoy it, and if that means having a little bit of what you love every now and again, I say go for it (within reason)!"
(BLOG) Why the kidney PREM measure is your...
The 2019 kidney patient reported experience measure (PREM) opened on 1 June and is available online and in ...
(BLOG) Working together to ensure we learn...
Simon Gillespie, Chief Executive of the British Heart Foundation and Paul Bristow, Interim Chief Executive ...