Holiday? …What holiday?! (life for the #chronic ill #Disabled and #Autoimmune)


If you are anything like us, holidays and celebrations can fill you with hope and anxiety nearing that of a space shuttle launch!

Will it happen? Can we do it? What could go wrong? When do we call it off?? Its one of the things they wont tell you in the doctors office or Imaging wards, is that you will never be able to know if you can celebrate another holiday, birthday, wedding or anniversary again; even your own. I have lost count of the birthdays, weddings, Dinner parties etc that we have been unable to attend and all the disappointment that goes with having to tell a friend or loved one that you wont be attending. Again.

I even go through a post-celebration depression where I can beat up on myself and my illness for days (even weeks). My hubby has learnt to use words like “we will try” and “we would really like to make it” and “We will see” to help protect me from the times that I might hit the wall when I cant do something. I am STILL learning how to be kind to myself when my illnesses are so unreliable and unpredictable. I was even weak, half blind, dizzy and too weak to walk at my own wedding!! – That is actually a sweet story and a story for another time… But back to the story of holidays/celebrations!

As with life, there are no easy answers for this one. Its one of the things that ‘symptoms’ of these diseases and chronic illnesses that there are no cures for and hurts just as much as physical pain; sometimes more.

So what do I do? Well here is what I try to do for my own spirit and for those I love and care about.

1. I forgive myself and reassure myself that it is NOT a failing in my heart or priorities, its a failing in my health. I have genuine chronic and challenging diseases.

2. I try and remind the people I love and care about that I love and care about them throughout the year and not just at a particular time or celebration. For example I will email them, text them, call them, send them a hand written card and things like that, regardless of the date on the calendar so they never have to doubt what is in my heart from them.

3. My hubby and I treat everyday that we are together as a mini celebration of its own! Yes, it may not be an official day of the year but there is NO time more relevant to enjoy your partner than today.

4. If I have energy, mobility, strength to go for a drive with my hubby and a cup of coffee, we will sneak out in the car and park up like two love birds and make out … (wait I should probably stop there!) … you get the picture.

5. The internet is a wonderful way to send flowers, buy the odd well timed gift and have it delivered to someone special!

and finally…

6. If it is someone who really does feel comfortable with your illness and all the things that means and looks like, there is nothing like being able to lay next to each other, holding hands and making a bit of small talk when you can get together. Like a hospital visit only without the terrible florescent lighting and constant noises. I am lucky to say that I have a couple of people in my life that have climbed into my sick bed and cuddled up and watched a bit of TV, listened to some music or just chatted softly. Priceless!! When I was a child my parents called it the blanket party (when they wanted by to go to bed) and so I am happy to say that I can still throw some of the most amazing blanket parties and some of the best times of my life have been holding a friends or loved ones hand while laying beside each other.

7. When I cant go on holiday… it comes to me! Yep! Derek and I have bought Mexico, Finland, Norway, Scotland and even some parts of Asia to our own homes and we will read, watch, discuss, youtube… anything and everything about that country and travel in our minds and hearts, until the day we may be able to go.

After all a holiday and celebration is a feeling and state of mind and so even the chronically ill and Autoimmune can still share in some of that too!

Gentle Hugs,


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