What Management Means – #life #Autoimmune #whattheydonttellyou #bedlife #truth #respect #goingon

I am always surprised where the will to go on comes from. Yes, even now.

I am going through a double flare at the moment and like many other fighters out there, I find myself asking myself constantly “why go on?” I expect we all do.

When the days are just one blur of pain, tiredness, resting, meds and reflection. OH the thinking!! Hours and hours spent thinking about the meaning of life and ‘what is the point’ sort of stuff…

I awoke from a dream today and said to my husband “If I had been born this way and known no other life than this then I guess this would be normal. Bedlife would be ‘normal’. PAIN would be ‘normal’. I would accept the way it is. But I can see that I still don’t. Even though I say all the right things sometimes, there is a part of me, maybe at the molecular level, that will ALWAYS yearn for the other ‘normal’. Not this one. Not this way. I guess that is the source of a lot of my emotional struggles really. Because, strangely enough, I have adjusted to losing friends, adjusted to losing my job, adjusted to giving up a whole tonne of things… but I just can’t accept that this is how life has had to be. I still hate ‘bed life’.

My husband smiled and nodded. He can see the inner struggle all the time. He knows I am always waiting for the magic cure to pop up in the media or via some magical doctor or specialist. But it hasn’t. In fact I am now seeing that they are right when they say in the small print “Some Autoimmune diseases are progressive and debilitating and require life long management”…

Management? What does that even mean?

I think the real management is being able to find the will to go on, finding the people to share your new life with, finding a peace in the darkest places, finding the things that can distract you from the realities and finding those who will respect you, even if they never really understand. That is what real management is; knowing when to cry and when to save your lungs for breathing. Learning when to attempt doing something outside the house and when to say “I know I can’t… and that’s ok.” Knowing how to say goodbye to people (and things) in your life knowing that through no fault of your own, illness caused too much of a gap to sustain the relationship. Knowing how to find dignity in the most hateful of circumstances. Learning how to try and find a new interest or ability that shows you have some purpose in life beyond the shadows of our challenges.

Its my opinion that real ‘disease management’ isn’t found in a medicine, in a doctors office or in the glossy pages of some diet manual. Its in the heart and soul of everyone who finds the ability to make it through until tomorrow.

Gentle hugs,


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