The Long Haul

It is very hard to stay optimistic, content and positive when pain and symptoms have you bedridden for any length of time. .., I don’t care who you are! 

All those well meaning memes and positivity gurus have no idea what it’s like to face pain and debilitating symptoms for an unknown, and unknowable, length of time. 

Most people can’t even imagine it let alone have to live it! 

It’s hard waking up each day knowing that another day will be a repeat of the last, as you watch the clock wind down yet another day. A day you won’t have back or refunded to you. Ever. 

It’s a physical and emotional battle. The hardest battle ever. And you must fight it alone. No one can take your place or fight it for you. 

You can’t have a time out, holiday, coffee break or walk away… ever. 

For most of this year that has been my reality and I feel I am not coping very well as I approach my eighth month. Today the concept of forever sat heavily on my heart. 

Being bedridden is nothing new for me. I have been here before. In pain. Deeply frustrated.  Sad. Confused. There have been many times over the past 10 years. Sometimes lasting  weeks, sometimes months and even over a year. But it has never gotten easier for me. I don’t know why. I don’t seem to get better at it. 

It’s still torture. 

It’s actually difficult writing this as there doesn’t seem to be adequate words to describe how truly challenging and heartbreaking it is. 

I know that there are chronically ill and Autoimmunes out there who are more able, higher functioning and more mobile than me and there may be some that are more disabled than me. But there doesn’t seem any way of predicting who may be at the same point as me or who may be able to understand and identify how it feels. We are all so different. 

It’s important to me that I always recognise that we will all be at different stages and have tried different things in our life with these illnesses. I have always wanted to give respect to this. Always. 

In the meantime I have been trying to tell myself “when I can, I will … [insert activity]” or give myself pep talks like “you got this… tomorrow will be the day!”  But it isn’t easy to say these things everyday and watch another day go by. 

What is the magic answer to handling these times? I wish I knew. I apologize if you thought I would be able to give you a magic answer that makes it all better or easier. I really would if I could! 

It is difficult for my husband too. He must watch me suffer, struggle, cry, curse and give into terrible emotional pain. And there is nothing he can do to make it stop. It must be torture for him too. I am in awe of him sometimes. 

I have been doing the medications, meditations and mindfulness to help cope with this long haul, and I can’t afford to let myself think about what if this is the new normal?! What if this doesn’t improve?!! 

It would be a difficult emotional place to climb out of. Although, it would at least be an answer to some questions. I find the unknown so terrible to deal with sometimes.  

So I have done my best to push through this trying time by starting a charity in the hope that a cure will come one day and doing some advocating to educate people what it is really like for some of us, and hopefully remind others that they are not completely alone. 

This is all I know how to do at the moment but I hope each little thing I do or try will be meaningful in time. 

… And I keep hoping. 

Gentle hugs, 


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