It can be hard not to feel pathetic sometimes.
If I have big plans in the evening, and by big plans I mean leaving the house, I tend to spend all day just sitting and waiting.
It would be lovely to be able to potter around beforehand, but my energy is so precious that I can do nothing more than wait until it’s time to go out.
Sitting and waiting doesn’t do much good when you think of the anxiety that I have come to experience. I cannot trust my body to behave and so I tend to sit and wait and worry and overthink about what the evening will bring. It is my whole day – those couple of hours out of the house. More often than not they are my whole week.
I feel utterly pathetic. And it almost takes away the joy and excitement at having plans.
Life feels quite hard on these days. I feel desperate to be normal; not special, just someone who doesn’t have to plan and live life as if it’s a military operation.
M.E. myself and I 
Hello!
I hear your frustration. I have been somewhat unwell since a severe mono at age 21. An even more severe hit came with a bad flu as I turned 40. It suddenly flipped my autonomic nervous system into orthostatic intolerance, when I am sitting or standing. I traveled, in 2001, to hear Dr. David S. Bell, (from the 1980’s U.S. CFS outbreak in Lyndonville N.Y.) , speak to an auditorium full of fellow M.E. sufferers in Toronto. Came home and did his ‘poor man’s orthostatic intolerance test’ . (find on Health Rising/ Cort Johnson). I took a series of blood pressures, and noted my symptoms as they appeared. I stood very still. Very enlightening! I had not made the connection to heart rate and blood pressure before. I understood now why shifts in barometric pressure affected my energy, stamina, and short term memory.
It is not at all pathetic to pace your day so you can get out in the evening. It is a practical strategy. There are other tips in the context of dysautonomia. See the dysautonomia international website and the Dr. Blair Grubb, Dr. Satish Raj and Dr. Peter Rowe videos for more info. There are videos around by Dr. David Bell as well. I work these days on preventing blood pooling in my legs and abdomen and that helps quite a bit. I have even progressed to exercises while wearing very light ankle weights while lying flat. What a challenge this illness is, but some things seem to make a difference. Sugar is evidently not my friend. Loved the photos of your tea cakes though. 🙂
Hugs, from a former registered nurse in rural Ontario Canada.
Ps. The Dr. Ron Davis research at Open Medicine Foundation, Stanford USA encourages me, along with the Norwegian Rituximab study (Fluge and Mella)
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