I need total flexibility in order to have a social life
I am definitely battling fatigue much more often these days; even when I'm not in pain, fatigue can take me out as I've run into a wall. So friends have to be flexible and understand that when I cancel it's not because I am flaky; it's because I am exhausted. But I also try to honor my friendships by not abusing this flexibility; it's a constant give and take, and it requires transparency and communication. COVID has made socializing a little harder, but I have a bubble and we keep each other informed of how we feel, when we get tested, etc. A few of us do only outdoor meetups, which is hard when it's 18 degrees in NYC. But overall, my social life is one of the things that keeps me really happy (and happiness helps fight pain), even if I'm exhausted the day after.
Hey
I completely agree with you! I think honest communication is the best when it comes to this. When I make plans with my friends, I always tell them that if I am too tired or in too much pain I will have to reschedule or cancel. Often I feel guilty when I have to cancel because I know they don't fully understand the reason why. Before Covid, I would tell my friends that if I have to cancel there more than welcome to call over, lie in bed with me and just watch tv! Unfortunately, here in Ireland were still in lockdown so I can't do this right now. I hope your energy levels start increasing soon! Being fatigued all the time is so awful! And hopefully once the weather gets hotter it will make meeting up outside easier!
Ali.
I hear you! I feel the same at the moment. I was listening to a podcast today about the fatigue that we can experience at the end of Winter. They also mentioned the Pandemic fatigues as WHO defined, which is real and happening to all of us. And on top of the season and the pandemic, you can add our AxSpa fatigue!! So to be honest, we have plenty of reasons to feel like that for a start. Like you, I am struggling with my level of energy at the moment and with Covid, then my social life suffers. Yet, seeing friends can really give me boost and recharge my batteries. This constant juggling between the level of fatigue and level of commitments is tiering in itself 😉 It's like balancing on a rope for me, it requires so much attention sometimes. Anyway, I guess we are getting expert in that balance exercise with a lot of practice. Take care, Julie. 
Friends and family don't get this. I hear "it isn't all about you" or" don't let your disease define you." My symptoms and condition became life altering about 18 months ago then the pandemic hit. My diagnosis came just two months ago. So I am now finding myself in the position of being guilted for focusing on self care that is viewed as selfishness.
I am so sorry you are not getting the support and the understanding you need...It can be hard at the beginning to process the diagnosis and make some adaptations in your life so you can self care and still function, work, socialise, etc. Anything you can do to make you feel better, live better is not selfish, rather the opposite: if you practice self care and self compassion, then you can be available to your family and your friends, with care and compassion in the same way you do it to yourself.
How if the communication with your family and friends regarding your diagnosis and your condition? I remember at the beginning of my journey as a patient, It was hard for me to tell people what was happening to me...We have plenty of resources and articles on our site that maybe you can forward to your family and your friends so they would have a better understanding of what is happening to you? It can difficult for them to get it as our condition is not easy to apprehend, and so the changes you have to make might not make sense to them because they can't see how it's affecting you. I hope it makes sense. We are here if you need more support. Take care, Julie.
