Top Tips for Living with a Chronic Disease

I love sport, I love food and I love adventures. Unfortunately I was diagnosed with a disease that has made doing the things I love very difficult. Late last year, October 2015, I was diagnosed with a Chronic Autoimmune Disease, Inflamed Bowel Disease called Crohns Disease. Most people have not heard of Crohns unless they have it or know someone who has it. I have gone through the wars with this disease and currently in remission and on the road to recovery to do the things I love! 

 

I decided to collate my top tips for anyone living with a Chronic Disease, in particular tips from my own experience that have helped me cope with Crohns, specifically with exercising/training.

 

Health

Know and Respect your Limitations

Listen to your body. In my case, my gut. You know the saying gut feeling? It’s a thing! Your gut is your second brain. If I had a dollar for every time I have felt drained and unwell but I have tried to keep up with other people, I’d be rich! A friend named me Astro Girl as I am usually full of energy “Go! Go! Go!” and then all of a sudden I run out of batteries and will just turn off. At first (before diagnosis) it was very frustrating as I loved to train (swim, bike, run) on weekends and then go out at night and could not understand why I would feel so ill and fatigued. It wasn’t until I was diagnosed Crohns and was informed that my intestines were so inflamed nutrients were not being absorbed resulting in anaemia.

Fuel your Body

Keep a food diary. Not only does this help you keep track of trigger foods but it is also important to take note of your intake of food especially when training to ensure you are getting enough energy. Some illnesses you need a higher intake of food as your body is working overtime fighting the disease. Your appetite will vary along with symptoms and it is important to keep your body fuelled even if it is through liquid form (if you can’t handle solids). It is beneficial to see a dietician if you are unintentionally losing weight as you may require a nutritional supplement.

 

Rest and Recover

Fatigued? Exhausted? Similar to knowing your limitations and fuelling your body, I can’t stress enough that everyone has different requirements. I need a good solid 8-9 hours sleep per night otherwise I get completely run down, compared to other people who can handle less than 6 hours. It can be hard to keep on track with your training program when you don’t know how your body is going to handle the day. Playing it by ear, or in my case playing it by gut. Don’t push through as you will probably make yourself sicker. For me the best thing is to rest and rehydrate and if I am feeling up to it some active recovery (walk, yoga etc).

 

Share Experiences

They say misery is always better with company. Although I don’t wish this disease on anyone, it is comforting to know that I am not in this alone. There’s a small army out there fighting to find a cure. It is a very scary prospect being diagnosed with a disease or undergoing surgery, therefore hearing feedback and advice from ‘veterans’ help ease the uncertainty. For instance, before my surgery I was told that sneezing, coughing and laughing will really hurt after surgery and that pressing a pillow against my stomach will help limit the pain. Thanks Emma for that advice!

 

Support Network

Similar to sharing experience, a support network will be you rock throughout this journey. Your support network does not have to have a team of disease sufferers, they can include your partner, your parents, your friends, a counsellor, a doctor, a nurse. It is really up to you who you can rely on to support you on your journey. For me it is my partner, my parents, my sister, a few close friends, my doctors and my dietician.

 

Seek Medical Advice

It is very important to have a reliable, trustworthy, caring GP. Your GP will co-ordinate/ refer you to a specialist, surgeon, dietician, physio etc. Don’t be afraid to ask questions (no question is silly!), bring your own research to the table and ask for their medical advice. Your GP can also assist you with your current quantity of training and if you are in a state to continue at that level or need to back off. It is also very important to discuss with you doctor / physio a gradual return to exercise plan after any surgery.

 

My biggest tip is find the doctor that is the best fit for you. If you like asking lots of questions and don’t settle for someone who rushes you along. This may take time as it may not be your current GP. I was so fortunate to have a great medical team, GP, dietician, gastroenterologist, IBD nurse and surgeon. Forever grateful.

 

Research

Research. Research. Research. I’ve learnt that no one is going to help you unless you help yourself first. It’d be lovely for someone to come knocking at your door with a big bunch of answers but it’s really up to you to determine what you want to do and how you want to live your life. Be proactive, not reactive… I want to be cured not just treated. Like I mentioned before, medical advice is vital however do not just settle for an opinion of one doctor, explore your options, seek different opinions until you find the best fit.

 

Another topic to research is nutrition. Everyone has different perspective on what your ideal diet should be and an opinion on diet and it’s role in autoimmune diseases. To determine if diet can help you, research and experiment. Explore different diets to see what best suits you, whether it is the elimination diet, raw foods, paleo, GAPS, plant based, the list is endless. Remember do what works for you!
crohns

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