Making Special Occasions 'Hallmark-Worthy' When You Have a Rare Disease
I love celebrating special occasions. I’m a real “Hallmarks moment” kind of girl. Always have been and I suspect I always will be. Cakes, balloons, lots of presents and good food. I especially love making the person who is celebrating their special day feel like they are the most important and loved person in the world.
You would think though I would realize those days may be a bit beyond my reach now, wouldn’t you. Wouldn’t you?
I have a rare disease; my bones break spontaneously. I have two non-healing broken femurs and feet plus other bone-related issues. I also have rheumatoid arthritis and a permanent colostomy. Saying I’m a little limited in what I can do is a slight understatement.
Despite that, I apparently still think I can be a picture of perfect health and energy when it’s my husband’s birthday. He is so special to me that there is no way I am not going to make his day as extra special as possible.
Our first plan is always to go out for lunch, and we pretend in the lead up to his birthday we will be doing that. We pick the restaurant or cafe, check out the menu online and get excited. We do this knowing it most likely won’t be able to happen. The effort for me to get out will spoil the day. By the time I get to a cafe I’m so exhausted it’s hard to talk, let alone make it feel special for my husband.
We know that at least at home I can pace the day and have the energy to get through all I want to do for him. At home I can lie down for 10 minutes here and there whenever needed to recharge a little. I will be determined to make a great lunch with my husband as my kitchen hand. Instead of a restaurant we will sit in our courtyard and both agree it is the nicest café we have been in for ages…even if we do say so ourselves!!
We will eat way too much and my husband will open a special bottle of wine he had been saving for a special occasion. I won’t drink because of my medication but he will say it was fantastic. He always does!
After lunch we will watch a movie on DVD in our living room, in Gold Class style and drink coffee and eat more cake. It will be a really lovely day, it always is. Although it will just be the two of us and quiet in so many ways in comparison to what most people would consider a celebration, it will still be a “Hallmark moment” – no, actually it will be a “Hallmark day.”
If history repeats, the next day I won’t be able to move, and apart from the physical pain, I will be struggling with unbelievable exhaustion. All from doing so little. I’ll remind myself it was worth every moment and I will definitely be gearing up same time next year to do it all again for the man I love so much and who cares for me so beautifully every single day!
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Thinkstock photo via nyul.
Sam retired early, from a successful Executive Management Career in financial services, due to chronic disease. She has a rare disabling bone disease, Rheumatoid Arthritis and a permanent colostomy. “When health gets complex, I’ve come to realise it is really important to find others who are also battling multiple issues, to share the never-ending complexities that arise”. As Sam’s disabilities progressed she started a blog called, My Medical Musings. She also set up an online support forum for anyone wanting the hand of friendship as they journey an often lonely and difficult path living with the effects of chronic disease. “Both my blog, My Medical Musings and online support group, Medical Musings with Friends, are a place to laugh, cry, share and vent together”. Sam is a member of the Chronic Illness Bloggers Network and she is passionate about promoting and supporting other chronic illness bloggers. You can follow more of Sam’s story at her blog "My Medical Musings" https://mymedmusings.com/ She is also author of the book: "My Medical Musings, A Story of Love, Laughter, Faith and Hope; Living with a Rare Disease. More details about the book can be found on Sam's blog.
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