I always suggest that people verify my claims especially since they seem to go against what is considered normal or standard(for example exercise and any amount of small exertion in general harms us with ME. This is a bit counter intuitive as people seem to see exercise and beneficial if not curative).
Thank you. small joys is a good way of expressing it. But I also feel a lot of grief and trauma. Grief that I am too ill to play with my pets. Grief that I never had a chance at a successful life or to express my talents an hobbies. Grief and trauma watching how this illness effects my husband. Grief from being abandoned by my family (very common in disabled people in general).
I wasn't always as sick as I am but this illness is progressive and only gets worse as time goes by.
I do get small moments of joy-but they come with a price. One of the most insidious parts of this disease is enjoyment/anticipation can often cause debilitating crashes (this is known in the medical community as PEM/PESE. I highly recommend a video series from The Bateman Horne Center on Youtube regarding PEM for more information). Our immune systems cannot handle exertion be it mental, physical or simply experiencing joy. We pay dearly for these things.
We also cannot do things that most people can to cope with the stress of out illnesses or the stress of life. I cannot go for a walk, exercise or even listen to music or watch tv at times. I cannot visit friends and socialize. I cannot take up a hobby or any sort of activity.
I am on the severe/very severe spectrum of the illness but even those with the "mild" classification struggle to do these things and they always come with a price.
I spend a lot of my time in a quiet dark room because I cannot handle sensory inputs(lights sounds etc). It is like solitary confinement though no crime has been committed.
Video 1 from Bateman Horne regarding PEM. There are 7 videos in this series.
That's a good suggestion. Grief and trauma are very human. Can you tell me about your pets? What kind of animals are they and what are their names?
We have 6 guinea pigs. 2 are "rescues"/abandoned. We started with Oreo (m) and Nutmeg(f). Oreo was misgendered and we thought we were getting two females. OOPS!
Nutmeg had 3 babies Squeaky and Nougat and Loki (Loki passed away last year).
The two rescue piggies are named Lucky(m) and Tilly (f). Our males are neutered so no more surprise pregnancies.
6 piggies seems like a lot and it is but it's also not much more work than having 4 (we also have hired family members to come to our home once a week and help us with the cleaning in general and of the cages to make sure they are well taken care of). Guinea pigs are herd animals and having the two extra "rescue" piggies has had a positive effect on all the piggies.
Maybe I will post pictures of them here on Hive on this account or my main when I am feeling better. They are cute hilarious little animals.
For now I must rest. Thanks for the conversation. I really appreciate it. ❤️🦄
Thank you very much, that means a lot. Animals bring so much joy into our homes. I have had pet rabbits in the past and was really surprised at first how unique and individual each one can be, if given the space and freedom. Hilarious and cute is how I would describe them too!
Please tag me if you do post pet photos on your other account.
Yes take your rest, I really ought to do the same. You're welcome, I appreciate it likewise! Have a good one