At first, it may seem like your diagnosis only changes the big things – you now have to manage a chronic illness, adjust your treatment as needed, learn to recognise symptoms, be prepared for a myasthenic crisis, etc. Fatigue makes everyday life harder and you may feel frustrated, ashamed or vulnerable for needing assistance with simple tasks that took no effort before. 

Myasthenia gravis, however, can affect ‘the small things’ too, areas of your life you never expected to change. MG can target the muscles you need for breathing as well as those you use when having a meal. You may find swallowing food as challenging as chewing it and even if you wanted it, this is one area where you can’t get assistance. That’s true but it’s also true that you can make eating easier on you with some easy to remember tips and tricks. And while we’re at it, let’s also talk about proper nutrition for people who live with MG. We at FindMeCure want to help you make living with chronic illness easier, so today we’ll talk all about food and nutrition. 

Some things take figuring out.

People who live with MG can often share their journey with food as if it were a tale with a classic narrative. It may leave you feeling anxious if you can’t seem to follow the same structure of trial-and-error resulting in a lesson learned. You are not the exception, however, and you too will learn your limits and triggers. 

You may find out after trying it that most alcohol drinks don’t agree with you now and instead exacerbate your symptoms. You don’t have to give up alcohol altogether if you don’t want to but you can cut back on it and avoid spirits that make the slurring worse. “Floppy” foods like lettuce, spinach, cabbage and so on can be difficult to swallow but you may find out that chopping them into manageable pieces can help. 

Many people with MG find meat hard to chew. If you enjoy meat and you need the nutrients, don’t go vegetarian over it – instead, opt for fish or tender chicken. Maybe a few small meals throughout the day work better for you, maybe you need a big breakfast before fatigue settles in or maybe you have a lot of smoothies and shakes. The truth is that the only important thing is getting enough nutrients to your body in order to keep it in optimal fighting state.

There are different tricks to try. 

You’re not the first person to get diagnosed with MG, so you don’t have to do it all alone. There are other people struggling and coming up with solutions everywhere and you can either reach out or search on blogs and websites for myasthenia gravis. Eating doesn’t have to be a chore and you can still enjoy it with some preparation. 

To soften solid food you can try moistening it with different sauces, broths, butter, condiments or yoghurt. Though some people find that yoghurt makes their saliva “stickier” and more difficult to swallow, so you’ll have to figure these things for yourself. Avoiding dry and crumbly food can help prevent choking and taking anticholinesterase medication like Mestinon can turn out to be a gamechanger. Try and find different pathways for your food when you swallow by tilting your head in different directions. 

Keep in mind that your doctor may recommend a consistency that is ‘safe’ for you, so thickening your food could be necessary sometimes. Avoiding thin fluids like fruit juice – the one fruits release when you chew them – can be a smart idea if you have a hard time swallowing those. Some people with MG report that even swallowing saliva can be difficult and make it hard for them to lie down and relax. If you’re one of those people, taking your medication may turn out to be a challenge. 

Crushing tablets and mixing them with a smoothie or a shake if your doctor knows about it and has given you the green light can be one possible solution. Mixing powdered superfoods or supplements (but not with your medicine!) in shakes can also be an easy way to get more nutrition. Just make sure your doctor knows about your nutrition plan because some supplements can interact with your medication in undesired ways, for example weakening the effect. 

Good nutrition is still important and achievable. 

Although it may seem like eating healthy is a luxury now, don’t get discouraged. The truth is that any nutrition is better than none at all and many people with MG count themselves lucky to be able to have mashed potatoes and baby food. Don’t be too hard on yourself – having a few meals a day will always be better than striving for perfection and ending up not eating anything, even if those few meals consisted of pureed veggies. 

Actually, that might be a good idea. You can pack a lot of nutrients and vitamins in a veggie or fruit smoothie or enjoy some egg salad instead of eggs sunny side up if those are difficult for you to chew. A healthy diet is especially important now for maintaining your weight if you’re on corticosteroids, since exercising may be out of the question for some (but still achievable for some). Even though you may not have the option of resorting to physical activity, you should still strive for healthy weight as putting on pounds can make everyday life with MG more exhausting. 

Avoiding water retention (a common side effect of some medications) can mean lowering sodium by saying no to frozen meals and salty snacks. To relieve stomach upset, part ways with dairy, except for yoghurt, high-fibre and fatty foods as well as spices. Remember that prednisone can speed up the bone loss process that occurs with age, so ask your doctor about calcium and vitamin D supplements or foods rich in them that you can safely consume. 

Learning to feed yourself after myasthenia gravis symptoms manifest can take some time. It can be frustrating and disheartening and it can lead to feeling like meals are a chore to get done – it takes the joy out of having dinner with your family or friends. However, you will find your pace eventually and it will get easier. 

If you feel like your medication isn’t doing enough to relieve your symptoms or if comes with too many side effects that make life seem bleak, you can search for an alternative. Treatments in development enter clinical trials all the time and you can become one of the first people to have access to them. 

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