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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Realistic Expectations

My life since last March has been a joyful wonderland of new challenges, new people, new experiences, new feelings emotionally and physically as many pieces of ME/CFS melt away. Sometimes it has been an uphill battle, like my first few weeks back at work as a massage therapist, or looking at too many bills and not enough paycheck, or catching yet another virus and doing my best to muddle through. Somehow, it all works out.

This week makes an even five months since I landed my new job and moved back to "my" city. I've been in my apartment for nearly three months and it is starting to feel like home.

My job is relatively low-stress emotionally, which is greatly needed. My bosses are great and the job has a lot of autonomy. The clientele is mostly very healthy. (Thank goodness, they are also considerate so usually freshly showered!) It is a joy to help them with their pain issues and stress management.

Others often ask how anyone can do massage therapy with this condition. Believe me, it is a lot easier than sitting behind a desk. During a massage, I can move and stretch, lean into the table here and there as needed, and there are 10-minute stretches where I am sitting down to work, and close my eyes and breathe deeply and slowly while my hands are busy. Most days the short shift flies by and is no more than a session of wonderful stretching and rejuvenation, punctuated by some good laughs in the break room with co-workers.

My challenge is that as I feel better emotionally and physically, I want to do more. I am no longer going home from work and going straight to bed. My evenings are beginning to feel a little restless.

Three weeks ago, I had the wonderful miracle in my life of being given a car, straight out, title signed over. There are more singles activities happening in my area than ever before, and I need a pocket calendar again! One or two a week are penned into my schedule with high hopes and EXCITEMENT!! But then... at the activity I find that I am just not quite up to it and leave early, either because of tiredness or MCS issues, or realizing my throat is sore again. At least I was interested and got there in the first place.

Activity in my church is a high priority for me, and because of my work schedule, it keeps coming last, which is so frustrating. Saturday is planned carefully to make it to meetings on Sunday... and because of exhaustion from this week (including a flu bug and a bad reaction to a supplement), I slept through the entire morning today and did not get up until 1:15 pm. That is over 13 hours of on-and-off sleep, something I've not done for months. It feels like sabotage today, feeling wiped out AGAIN. After I get done posting this, it is back in bed for me. Most likely, I will not make the evening activity downtown that I have been wanting to go to for MONTHS.

The next hurdle ahead is because I am meeting new people, including some very nice single men. I have yet to explain ME/CFS to anyone. The situation arises where I am sitting there visiting, and realize that there is way too much perfume or cologne in the air making me ill. Although I feel honesty is the best policy, courage fails me to come out with it and say what is what. Others' reactions are still too much to deal with. It is far easier to say, Yes... let's DO go get refreshments OUTSIDE. Please.

It is easy to be impatient after years of inactivity, and to want to do EVERYTHING and anything that comes along. I'm thinking that my rule of thumb to be realistic is to choose maybe one activity a week for now, and maybe one or two a month in addition, knowing I could cancel. The trick is to be okay with canceling. It is NOT okay. It is more a battle in the mind now than in the body, even as I sit here physically wiped out having not made it to something important. It needs to be okay, as much as I am dealing with still. It is not okay only choosing one when there is a scripture study group on Tuesday nights, a temple group on Thursday, a dance on Friday, and the evening socials on Sunday night. That is too much for a "normal" person who is working anyway. So my reality IS only one of those. (Can't even consider volleyball or Saturday morning hikes.)

Evenings in front of movies with a bit of knitting just are not cutting it anymore. So how to find okayness... patience, patience. *Sigh.* It just isn't right, is it, to live perpetually in the "black hole" of being an automaton, working, sleeping, working, sleeping, and no more.

Funny how our perspectives shift. Of course, this is all okay when the alternative is a huge crash that could take out months or years of life once more. Such a dichotomy of shifting thoughts and feelings.


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