5 Ways To Beat Fatigue In Myasthenia Gravis
Fatigue is arguably one of the worst symptoms of myasthenia gravis. Together with muscle weakness, fatigue can lead to a significant decline in the quality of life. It may sound familiar: sleepiness even after a full night’s rest, feeling too tired to participate in favourite activities, get involved in the community or do your job even when you feel internally motivated, too fatigued to make dinner, play with your children or have a date night with your partner or even some moments of intimacy. Fatigue really can take over what feels like every aspect of your life.
Some people who live with MG experience less fatigue than others and some days can be better in that department. Some patients respond well to medication or reach remission and fatigue becomes part of their past. However, for some of you, life with MG fatigue can be a tough challenge and it may feel at times as if your disease has taken away all of life’s joy.
Don’t lose all hope just yet because fatigue can be managed to a degree. Although no single ‘hack’ can do away with your symptoms and there are going to be bad days, you can still make life with MG easier on yourself.
Take your naps seriously
Your daily naps may come to be as integral for your treatment as the medicine you take, your nutrition or the therapy your treatment team prescribed. Don’t feel bad if you can’t get through the day without taking an afternoon nap and make sure that you schedule it regularly so that your employer or your teachers know that you’re not available during this time. It’s not a whim, a preference or an indulgence – it’s a requirement for you to be productive in any way and participate in societal life. You don’t just feel tired and you can’t ‘power through’ it or simply drink more coffee like your healthy peers.
Some people who live with myasthenia gravis, in fact, feel so fatigued that they can fall asleep at any time, in any position. If you’re one of them, make sure you have a safe and comfortable nook for your naps – you don’t want to wake up with sore and aching muscles, it’s the last thing you need with this disease. Create a relaxing space with enough pillows and ergonomic mattress because the right support for your body is now more important than ever.
Restful, not boring
One of the tell-tale signs of MG is that your muscles weakness improves with rest. You may need more than one nap during the day in order to stay productive or simply enjoy everyday activities like a walk in the park with your family, preparing food or grocery shopping. A few little breaks from physical activities now and then are ideal. But what does a break mean exactly?
You don’t have to sit and watch paint dry in order to give your body the chance to rest up. There are many things you could do while staying still and letting your muscles relax and regain some strength. For example, you can take up meditation – a practice demonstrated to have many benefits for your overall health. You can start watching or rewatching a favourite sitcom – the short episodes are not only perfect for ‘binging’ but they can also provide a much needed 20-minute break. Or you can listen to podcasts and use this time to learn a new skill, begin a journey of self-development or simply gain more knowledge about an interesting topic. Don’t think of the rest you need as time wasted, instead engage in activities that are going to better you or provide comfort and joy.
Portion your daily responsibilities
We all have things we need to get done day-to-day and modern life can be very demanding when we try to balance work, domestic labour and family life. If you live with chronic fatigues as so many people with MG do, it can feel daunting.
Try and break down everything you need to do each day into smaller, more manageable tasks and take a few breaks between them. Remember to take some time to feel accomplished at the end of the day and don’t beat yourself up if some days the only things you do is have a meal, take a shower and nap. However, if your quality of life is suffering this badly too often, it’s something you need to bring up with your treatment team.
Don’t ask too much of yourself, especially during a flare. If you can outsource some of your responsibilities, do so. Asking your friends and family for help is only part of the equation. And yes, you should learn to ask for assistance when you need it. The people who love you want to be there for you.
Something else to think about, however, is labour-saving appliances. If you can include it in your budget, a robot vacuum cleaner can make keeping the house clean so much easier on you. A voice typing software is another way to spare yourself some strenuous activity if your life involves spending a lot of time on the keyboard. As for the kitchen, maybe it’s time to give up chopping vegetable on your own and invest in a kitchen robot. It might be a good idea to prepare and freeze ingredients for a few of your favourite meals beforehand, so you can have an easier time when a flare makes your fatigue worse.
Aerobic exercises could help
According to a small study done on the effects of incorporating physical therapy and psychological support on fatigue in MG patients, aerobic exercise focused on resistance and flexibility can lead to a small improvement in fatigue levels. More research on these therapies could indicate how to better apply them so that they have a more significant effect on fatigue. However, if you want to reap the benefits in your own life, you can start by practising some light yoga.
And if you want to give other treatments in development a chance, you can search for a clinical trial on the FindMeCure website. Many clinical trials also test things like innovative physical therapy approaches, the effects of certain supplements or novel procedures. You can find a treatment that works for you better than what’s already available, while also helping the medical world advance its knowledge about myasthenia gravis.