The Ultimate Myasthenia Gravis Gift Guide
If you’ve been following the blog you know that we mainly address patients here, yet once in a while, there will be a post that’s aimed at their loved ones and caregivers. Friends and family are important components in the treatment of any chronic illness – all you need is love, as the lyrics go. Well, not entirely. You also need to find a drug or therapy that works for you and your lifestyle, which is where FindMeCure steps in.
Loved ones, however, can offer the kind of support and acceptance no treatment can. As the holidays approach, people who live with myasthenia gravis may feel excluded from the fun because of the restrictions their disease inflicts on them. Some warmth and kindness go a long way but so does a thoughtful gift meant to make life a little easier for them. This year as it’s the beginning of December and we know you’re starting on your holiday shopping, we composed a gift guide for your loved one who lives with this rare autoimmune disease. And if you are someone who has myasthenia gravis, you can share this post on your social media so your spouse, your mom or your best friend knows exactly what to give you for the holidays. It’s not a subtle move but it’s guaranteed to work.
As suggested by the blog 365 days of myasthenia on a low energy day, someone who lives with muscle weakness and fatigue will appreciate a source of entertainment such as a streaming service subscription, new headphones for their favourite podcasts or a kindle. You can add to this gift a pair of sweats for them to relax in, cosy knitwear, fluffy socks or a soft sleeping mask for their daytime naps.
Myasthenia gravis merch
You know your loved one better than we do so keep in mind that merch might not be a good idea for someone who is still coming to terms with their disease. If you don’t run the risk of upsetting them, however, you can choose from a wide variety of MG merch. For your spouse, your child, parent or friend who is somewhat of an advocate, a myasthenia awareness shirt or tote bag can be a thoughtful gift. You should check if your local MG organisation sells merch as a percentage of the price would typically go to a charity or you can add a donation certificate to your gift. Being giving and charitable is the holidays’ spirit.
If you’re more on the creative side and you want your gift to be as practical and helpful as it is sweet, you can start working on some handmade vouchers for free services provided by you. Some things you can include are grocery shopping, cleaning the house, cooking, driving your loved one to work or an appointment, doing laundry, helping them with grooming or any other assistance that you know they may need on a bad day. Remember to include fun things like watching a movie with them or singing karaoke or reading to them – you can be as creative as your heart desires.
Giving them the present of your presence when their symptoms worsen is not only a thoughtful gesture – it also makes accepting assistance an act of receiving a gift already offered. It lets them know you will be there for them on their bad days.
A helpful book
This summer we interviewed Dr Kemi Olawaiye-Dampson for our blog. After a long struggle, Dr Kemi Olawaiye-Dampson decided to make lemonade out of the bitter lemons she had been given. This is how her book “Living With Myasthenia Gravis: Finding Hope In Life’s Challenging Crisis” came to be. Share her story of despair and hope with your loved one to show them that there is always a silver lining even in the darkest of times.
“Living with Myasthenia Gravis” is the perfect gift for someone who recently got diagnosed as it gives a vivid description of the disease and the path to management of symptoms. In her book, Dr Kemi Olawaiye-Dampson also addresses the psychological and emotional difficulties that people with MG experience as a result of their condition and presents strategies to handle them.
Around the home assistance appliances
If they don’t already have appliances to make their home life easier, now is the time to think about simplifying difficult tasks. There is no need for them to chop the cooking ingredients if they have a chopper and a good powerful blender will make them want to add even more nutrition-packed smoothies to their diet. A robot vacuum cleaner is also a great choice – the fewer physically demanding tasks your loved one has to perform around the house, the less anxious they’ll feel when a flare occurs. Gift them some peace of mind by reducing their household chores.
Voice typing software
Nowadays it’s increasing rarer to find a job that doesn’t involve any typing – most such jobs demand some form of physical labour which can be equally challenging for someone who lives with myasthenia gravis. Just as home appliances make domestic tasks easier, dictation software can make work-life more manageable and even increase your loved one’s efficiency. It can be used outside of job-related purposes as well and finally make keeping a journal easier (activity recommended for people who live with chronic illness) or even inspire them to share their experience with the world.
Remind your favourite person that life doesn’t end with their diagnosis. Not everything should revolve around MG now that they live with an autoimmune disease. They’re still a person, not just a patient, and they still have interests, hobbies and goals. Think about an experience they have always wanted to have like a road trip or going to a music festival and research how to make it possible for them – either during a time of improved symptoms or by managing a flare so that it doesn’t pose as many limitations. You know them and their disease symptoms better than we do, so checking off an item on their bucket list can be achieved when it’s most convenient.
The gift of empathy
In her blog post on Myasthenia Gravis News, Margarida Azevedo shares that her disease came with the unexpected gift of deepening connections, support and understanding. This is exactly what we mean when we say that a diagnosis can turn out to be a blessing in disguise, revealing our truest friends and our greatest strengths.
The best thing you can give someone who battles MG is your unconditional support and understanding. Learn about their disease and know how their symptoms may fluctuate. Believe them when they tell you a certain task is strenuous to them even if you can’t imagine why. Muscle weakness and fatigue are invisible, so people who live with MG rely on their loved ones’ trust and empathy.
If you are a caretaker or a person who lives with MG reading this and you noticed that there is no significant improvement in symptoms or the side effects from treatment are more than anyone should have to deal with, there are alternatives. You might want to consider treatments in development and start looking for the right clinical trial. Researchers are working every day on developing better drugs and therapies so that you can live your best life despite myasthenia gravis.