Why Can’t You Work? – Invisible Illness From the Inside

Tala's Reflections

I’ve been mulling over how to address this very directly for a few weeks now.  As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out.  If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry.  If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today.  PLEASE.

I want to encapsulate as much pertinent information as I can here.  It does however require some insights that may be…

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Busy, busy, busy or tired….

I have been in hibernation mode, I suppose. I haven’t visited social media technology much the past few months. I have managed to accept my tired days and enjoy my good days. Getting to that point hasn’t been easy. I have gone through a long period of depression, sadness and trying to keep up the good fight. In the end, too much fighting and not accepting that fibromyalgia and chronic fatigue limit me, inevitably, makes things worse.

It isn’t easy accepting limitations. It is even harder to make others close to you accept them, as well. I know it isn’t easy to be on the outside and try understanding the fatigue and limitations. Just imagine being on the inside of the battle!

My pain is managed fairly well. I can live with pain and keep on pushing through. It is the fatigue that really gets me. I want to function, I want to go, go, go. I can’t, though. I just can’t. No one will ever understand the intensity of chronic fatigue without living it. It is alright though. I have accepted it. If I must sleep; I will sleep.

The insomnia cycle is where it really gets me. It never fails, insomnia strikes, when I need sleep the most. I really need to function the next day; I have no choice. I have figured out that my insomnia strikes with the hint of rain in the distance or a drastic shift in weather. But then, I have to sleep an insane amount of hours, soon after.

Awww, the crazy life of battling fibromyalgia and chronic fatigue. I am surviving. Some days I don’t feel like I am living, but I am slowly finding new ways. Now, hopefully, off to sleep, I must go….

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tsu website

I am exploring this website called tsu that is supposed to pay you for content. Sounds interesting, go check it out if you get the chance. It seems to have some potential.

http://tsu.co/litlangelkins

The Teal Pumpkin Project Takes Off

So great for kids with food allergies

FARE is thrilled that so many families across the country are planning to participate in the Teal Pumpkin Project! The idea is simple –pick up some inexpensive toys (ideas can be found on our website), paint a pumpkin teal and place it and a free, downloadable sign from FARE in front of your home to show that you have non-food treats to hand out.

tppporch

The campaign has been tremendously popular on social media – reaching nearly 5 million people on Facebook – and has been featured by national and local media across the country. Here are just a few of the articles, news clips, and radio spots that have helped promote this fantastic campaign for inclusion:

Teal pumpkins try to change Halloween for kids with food allergies (CNN.com)

How to Make Halloween Less Scary for Food Allergies (ABCNews.com)

Teal pumpkins make Halloween safer for kids with food allergies (TODAY.com)

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You see fall, I see fatigue

The weather controls my life!

sleepytime
I can’t plan too far in advance because the weather often changes and with each change; my body and energy decide to change, too. This can’t ever be a good change. I crash, and I crash hard!
Most probably don’t even notice a few degrees difference, here and there, but not me. I can tell you the weather is going to change, even if only just a degree or two, at least a couple of days ahead. My weather premonitions come with aches, pains and extreme fatigue.
My aches and pains come in the form of various joint pains and overall muscle fatigue. The joints that hurt are never the same, jumping from one to another, with each changing weather pattern. Yesterday it was my knee, two days before it was my back and the week before, my shoulders. My joints ache to a debilitating point, ranging from limited range of motion to inability to use them.
The muscle fatigue is like none I ever experienced before. It is like getting sick with the flu, but worse. Just lifting my arm or moving my leg seems like an extreme feat. My muscles don’t want to work, but resting doesn’t provide any relief. It is like I ran a race, but haven’t even gotten out of bed. The tension doesn’t ease with stretching or medication.
The fatigue is so amazingly extreme that it even shocks me. Who knew someone could be so very tired. I can sleep 12 hours straight, wake for an hour and go right back to bed for 8 more. It is insane, it baffles me; and drives me into misery. I do not want to be so tired; I do not want to sleep to the extreme. My body gives me no choice. I cannot stay awake or function, no matter how hard I try or how much caffeine I ingest. The more I fight it, the more tired I get and the sicker I feel. If I don’t give in, I get even worse. When my body decides it needs to sleep; I must sleep.

sleepyball
I have tried battling it all, to my detriment. See, if I don’t give in and allow my body to rest; I get worse. The pains come on stronger and more debilitating, the fatigue is even more extreme, and I physically get sick. My throat will start hurting, my lymph nodes will become swollen, I will run fever and, literally, become sick.
It sucks, I hate it, and I don’t want this for my life. It is the battle I have been given, though, so pressing forward is all I can do. I hope one day that my body will decide it is miraculously better. I hope to no longer have extreme fatigue, aches and pains. I hope one day there is a better treatment, cure or my body heals itself. I hope one day to feel that I can live life again. Until then, I must limp along and sleep when the weather changes. I must go with the flow of the constant changing of weather patterns and live my life for the good days.