How To Enjoy The Holidays Despite Myasthenia Gravis
December is supposed to be the most wonderful time of the year but for people who live with myasthenia gravis, it may not feel so. It’s hard to be in a jolly mood when you’re experiencing a flare of symptoms like muscle weakness and fatigue and the typical holiday activities i.e. wrapping presents and even having your favourite meal become challenging and exhausting. You may even start to resent things you have always loved like gift shopping and decorating the house simply because of how much energy they take from you and how drained you feel afterwards if you can even get to do them.
We at FindMeCure want to help you live your fullest life not only by linking you to treatments in research that can greatly improve your symptoms but also by supporting you during difficult times. There are ways to enjoy the holidays despite myasthenia gravis, you just need to shift your perspective and hack your way to a magical time with your loved ones.
Release unrealistic expectations
It may be a hard pill to swallow but if you’re experiencing a flare around the holidays (or even if your average condition isn’t ideal) some festive activities are off-limits. You may not get to enjoy snowball fights this year or maybe you won’t be able to participate in decorating the house, cooking a special meal or even having your favourite gingerbread cookies.
It’s certainly disappointing and it can make it very hard to get in the holiday spirit. However, ‘the most wonderful time of the year’ is not all about shopping, decorations or food – it’s about cherishing our loved ones and the non-material gifts we’ve already been given. A heart of gratitude can turn everything around, so we’d encourage you to think about all those worries and limitations you’ve been spared. In other words, focus on what you have and what you can do, instead of everything MG has made difficult.
Don’t be hard on yourself and release all expectations of what you were supposed to be doing around the holidays. Accepting your current condition is how you make sure you have a chance of actually enjoying this time of the year. Once you’ve come to terms with where you are now, you can start building your tomorrow on a solid foundation of self-compassion.
Get your treatment team involved
If you’ve been feeling a flare approaching or if you just want to be prepared for the unexpected, you can address that with the specialists in charge of managing your MG symptoms. A sudden worsening of myasthenia gravis fatigue and muscle weakness can ruin the best of times. If you’re already familiar with your symptoms and the pattern you go through with your flares, however (and a journal can help with that), you can take some precautions.
For example, you can do what Retha does when she’s planning a vacation with myasthenia gravis – since prescriptions are refillable every 25-30 days, you can think about it in advance to make sure you’ll have all the medicine you need during the holidays, especially if you’re going to be travelling.
It may be jingle bells time but in many parts of the world it’s also the flu and colds time and a weakened immune system does not respond well to viruses. Talk to your treatment team about getting the flu shot, selecting the right over-the-counter medications and other precautions to avoid getting sick around the holidays. Especially if you know that most pharmacies in your area won’t be open around that time or if you won’t be able to have immediate access to healthcare services.
Save your energy
Depending on the severity of your symptoms, it’s important to pick your battles wisely. Get your loved ones involved in this so together you can make a plan around your naps and rest time. Schedule shopping for presents or decorating your home after one of your naps when you’ll have more energy. Alternatively, you can start baking cookies in the morning when your energy levels are the highest and then do more relaxed things like watching movies in the afternoon.
Make sure you have a lot of assistance and don’t hesitate to ask for help when you need it. If you suddenly feel very fatigued in the middle of carolling or setting up the Christmas tree, it’s okay to stop and rest. Participating half-way is better than not participating at all, so let go of perfectionism.
Make your rest time festive
There are little things you can do to make even napping a holiday activity. There is no shame in feeling exhausted and needing to rest for most of the day. You can still have a good time even if strenuous activities are out of the question.
Get yourself some holiday-themed pyjamas, sweats or cosy slippers and make napping more festive. Watching a Christmas movie while cuddling on the couch with your spouse, your children or your pet is also a form of rest. Just being around your family as they prepare a delicious holiday feast without having to do anything is also an option. If you have the energy for it, you can contribute in small ways, pacing yourself to avoid overexertion.
Make eating manageable
The holiday season is when most of us go home to our family and come back after a week of festivities a few pounds heavier. For people who live with myasthenia gravis, however, even activities as simple and essential as eating can feel like a battle.
There are many ways to go about it, depending on the severity of your symptoms. Now is a good time to soften foods with gravy, cut meat into tiny pieces (or have someone else do it for you, don’t feel bad for needing assistance), or try some festive smoothies like apple pie smoothie, some cosy creamy soups and comfort foods like mashed potatoes. If your treatment team gives you the green light, take some anticholinesterase medication (Mestinon) right before having a meal. You can also have all the delicious food you’ve been looking forward to for breakfast, instead of lunch or dinner, as earlier in the morning your energy levels are going to be higher.
If it feels like your symptoms are not improving despite taking medication or the side effects outweigh the benefits you’ve been experiencing, it may be time to start looking for treatments in development. Clinical trials don’t simply test novel drugs and therapies, they make sure that the new treatment either provides more benefits compared to others already available or has fewer side effects for the same general improvement. Joining a myasthenia gravis clinical trial could lead to finding a better drug or therapy and in turn – living your best life despite chronic illness.