If I read one more article telling me how to beat my fatigue I swear I am going to scream! Honesty.
I just marvel how these so called experts dispense their advice and opinions without ever actually having an Autoimmune disease, let alone several! But [they] will dispense the most erroneous and harmful information that can have the most disastrous and painful results. Physically and emotionally!
I shake my head because what [they] will write or say the average nonsufferer tends to believe, even all the misinformation and conjecture. And what [they] write makes sufferers feel more and more demonized, confused and rejected.
The type of fatigue that I experience does not respond to exercise. How do I know? I tried!!!!!
Everyday that I tried to push myself my body has punished me for it. The more you kick these diseases the more they kick back. And they kick back hard. Harder than anything I have ever encountered. Ever.
I have tried everything from swimming, yoga, Pilates, weights, stretching, walking, recumbent cycles … and so on. Nothing has worked to stop this symptoms progression or this feeling of drowning and lead weights tied to my entire body!
And then they will start talking about diet…!
Oh my god don’t get me started!
Do people honestly think that an intelligent, dynamic, career orientated, educated and outgoing woman like me would not have tried anything and everything? Really??
Gluten free? Tick. Paleo? Tick. Dairy free? Yep. Juicing? Yep. Low carb? Yep. FODMAP? Yes. Supplements? I think you can guess what I am about to say…
And NO I don’t drink or smoke!
This type of fatigue is crushing and everyday I am reduced to tears as I crawl my way to the shower after sleeping for 10 hours, and then needing to go back to sleep for another 2 hours. A far cry from the woman that slept for merely 4 hours a night and worked over 120 hours a week!
Today I haven’t been out socially for months or taken a holiday in almost a decade.
Each day I have a window of maybe 6 hours in which to love my husband, hug my furries and maybe sit in my garden before the fog engulfs me again; like quicksand
For those who still have relatively good control of their fatigue then I suggest you cherish this closely. I hope you can keep it and I hope it never leaves you like this. I truly do!
For those who may be in a similar place as me where you have to measure what you do each day carefully, including showering, eating, dressing etc than you will have some idea of what I am writing about. And you also have my sincerest respect.
We can not afford to listen to the noises of those who have no idea of what this is like, no matter how convincing they may seem, don’t let them get in your heads or hearts! Don’t let them tell you you must be depressed or some other diagnosis simply because they don’t understand this symptom better. We need to be strong and teach them. They must listen to us if they are ever going to be of use in solving this.
In the meantime our focus must be carefully aimed at managing the life we have and the few chances we have to get something from living. That is all I try to do now. My precious time can not be wasted. Not a second.
Fatigue is a grossly underrated part of autoimmune life and I would gladly live with more pain if I could trade in the fatigue that haunts every waking moment of my life. I would even live without a limb to be rid of this insidious life taker.
I try to keep doing all the things I know people in my position should do like eating healthily, drinking enough water, avoiding stressful things and drama, doing whatever movement and physical thing I can and trying not to look down on myself and my disabilities.
I take my meds. I take my supplements. I don’t smoke. I don’t drink. I meditate. I think of others. And I refuse to let people tell me things that only I can truly know for sure… like what life is truly like for me and how hard I try every day of my life.