It is not unusual to attempt to deal with disappointment in people with chronic illness. Much that was important for me, including the loss of friends or people I once considered friends was stolen from fibromyalgia. My life has always changed Fibromyalgia. Your girl was a frequent visitor to the ER hospital from being an active and socially committed teenager.
It has been a challenge to adapt to this “new” life and together with those that love me most, every day, I learn new ways to cope.
The whole world sees only 2 kinds of diseases: those which take little time to overcome (e.g., flu) and those which cause death (e.g. cancer). There is little or nothing about long-lasting diseases, whether it be Fibro, Lupus or MS.
We appreciate you and those new to this lifestyle for those of you who have hung in with us, and I hope the following tips will be of help.
I know you might think we are not interested in having multiple declined invitations, but nothing is more than true. We ‘re sick about another gathering missing and probably have our own party. It is not that we want to let you go and, above all, it is very painful to hang out and have fun from time to time. If I must cancel AGAIN, please don’t be upset. When I can go with you, I just know that there has been a lot of time, energy and serious consideration. I don’t just give you my time for that day but also I give you my time for the next morning, very probably also, because after spending a few hours making your party legendary I will not be able to do anything.
NETFLIX & CHILL
Now, I am not talking lol, but just visit and chill with me, seriously. I’m not talking lol. I can’t go and kick it all out always but I would love it if you thought you would visit my home.
PLEASE DON’T GIVE UP ON US!
Because of my illnesses, I am an EXPERT to drive people away. I don’t want more than I do to become a burden or to feel like a burden. The first one goes hand in hand. We might fall twenty-five times, but I tell you … Charm lol’s 26th time. This is the saying, I’m pretty sure. We tend, especially during flares, to isolate ourselves. Send us a few times, but maybe text can take a lot of energy for some people first as phone conversations.
JUST LISTEN WITH THE INTENT TO JUST LISTEN
Listen only if we ever sell to you. To solve our problems, we don’t need you. Just listen. Just listen. Don’t let us know how strong we are. How strong we are. We are most likely tired of being strong, EVERYTHING, in that moment allow us to be vulnerable. If you say to your friend how inspired they are, I understand you mean well, but they may not take it that way. How does chronic disease inspire you exactly? Some of the skilled people tend to find disabled people inspiring for some reason. We realize that you’re trying to be nice or inspirational, but we’re not here to really inspire people with a good capacity to appreciate their lives.
Bring snacks if you choose to visit! We can’t get the energy to go shopping, and not to cook dinner all by ourselves. So, chips, and the bottle (or whatever your boat floats), (I like flamin’ Hot Cheetos) and a boat (or marijuana) are a great start for me to a night that shows you funny (to me) videos about YouTube and Instagram.
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