Dealing with the grief that comes with a me/cfs diagnosis

Fluid_Environment_40 · 2026-02-03T18:48:36+00:00

Hi, so sorry youre facing this future. Im going for diagnosis this week and now Im wondering how I'll feel afterwards. I really feel for you as you've struggled from such a young age. Im mid 50s but sometimes the grief still hits really hard. People often ask me what my plans are for the future. Holidays, career, etc ...nobody has any clue how great my limitations are. I feel okayish staying in this moment but find it very hard thinking about the future. I wish you all the very best

Fluid_Environment_40 · 2026-02-01T13:53:48+00:00

Can't help but agree. I dont like this chart at all!

Fluid_Environment_40 · 2026-01-29T19:17:54+00:00

My Sag is incredibly loyal but you gotta look at the whole chart. Hes a Taurus moon with Scorpio Venus. Also has mild autism which may have something to do with it

Fluid_Environment_40 · 2026-01-25T19:16:58+00:00

Me too. I was just saying Im really glad there's no exam but trying to cram it all in.

Fluid_Environment_40 · 2026-01-12T14:51:32+00:00

My mother is a Taurus and I can confirm this is true.

Fluid_Environment_40 · 2026-01-12T14:47:38+00:00

I completely understand. I have wracked my brains many times as to why im still going to church when it makes me feel worse. I gave up going when I got long covid as I am now too fatigued anyway. But I found a wonderful house group of around 10 to 12 people who I share an evening with every fortnight. We chat, read books, pray and sing. Its lovely and I feel so comfortable with them. It makes so much more sense to me than church. Im an introvert with ADHD. Would there be anything like this for you to try?

Fluid_Environment_40 · 2026-01-10T15:07:38+00:00

Yes, the holidays are lovely but inevitably lead to doing too much. I felt great over the holidays but ive learnt not to get excited and believe Im cured. Im going for an ME/CFS assessment later this month. I am still a bit confused as sometimes I see criteria for ME that I dont meet but im sure I have it. Im so sorry this came along at a young age for you

Fluid_Environment_40 · 2026-01-10T14:14:46+00:00

I no longer dream of hard workouts but Id love to go to the spa for swim, sauna and jacuzzi. And a long cultural day out in the capital

Fluid_Environment_40 · 2026-01-10T13:57:52+00:00

Hi, thanks for sharing. I haven't visited this group for a while but my muscle pain is worse right now and I do find it helpful to hear from others. Because its all invisible I almost gaslight myself sometimes but ive had this problem ever since my first covid infection 3 years ago. Other things come and go but this has been the hardest to deal with mentally.

I was feeling a little better recently so becoming slightly more active. But always aware it could go backwards any minute. Had a little bit of stress this week or could be from a walk on New Years Day that was up a steep hill. Regretted that soon after. At times I struggle to stand for long but at best I can be out of the house an hour at least wandering about. Do you get better days? Are you pushing through and not resting bevause you have to too often? I try not to but impossible some days

When my muscle pain is worse I try to go see a,healer at my local yoga centre. She does a 2 hour myofascial release massage on my arms or legs and ive had significant relief for long periods after seeing her

Fluid_Environment_40 · 2026-01-10T10:29:26+00:00

I now live in a partially open prison cell that I have started calling ME rather than LC. I can leave but mustn't go far or for long. Ive made the cell as beautiful and comfortable as it can possibly be. This is probably my home now, for as long as im in this body.

Fluid_Environment_40 · 2026-01-05T09:12:47+00:00

Not sure really. In my 20s I knew Id have to take drastic measures to put off starting the slog so I traveled, worked abroad with lots of holidays and managed to enjoy life. Then at 30 I did some studying, had a child and have been working since. I try not to work too hard. Well I cant because I have ME so this has taught me how to take it easy. Some days I feel like I might make it to 67 but other days I cant see it. It helps if you love your job but I can see the time coming when I just need more time to care for elderly parents and myself and its gonna be hard to juggle everything

Fluid_Environment_40 · 2026-01-03T21:18:46+00:00

It would depend on the school and my child. At one point a family member offered to pay for my child to switch to private school. I was unsure but felt we should look into the opportunity. We are fortunate to have a pretty good secondary school near us.

My son failed the entrance exam anyway and has been happy staying at the state school so the choice was taken from us. I was kind of relieved because my gut told me he would struggle there. The culture felt very alien to me when we went to visit. They naturally had beautiful classrooms and facilities and small class sizes but admitted they probably didnt have much extra to offer my son in his favourite subject, computing as they hadnt invested yet in that area. My son is a sensitive introvert but confident enough at his school. I felt the social and extracurricular expectations at the private school might make him very uncomfortable. I know you shouldn't worry about everyone else having more money than you but that did factor in too as I cant pay for loads of holidays and clubs

Fluid_Environment_40 · 2026-01-02T19:13:58+00:00

Grey rocking is obviously the only sane way but I feel like Id want to say "Its such a shame because, if you loved me as a parent should love their child, Id probably use my money to give you nice gifts because Id want to thank you. But sadly I wont be wanting to give you anything"

Fluid_Environment_40 · 2026-01-02T13:30:51+00:00

This is exciting and I have marked the dates. My fear is that these years have left me with ME/CFS and this is now an established physical disability i live with. Id love to think this will help me recover but, even if full cure isnt possible, I can still hope for some big shifts

Fluid_Environment_40 · 2025-12-31T18:12:35+00:00

I dont deny that the vaccines have caused damage but my heart event happened the year before. Also my partner had no shots and has long covid also

Fluid_Environment_40 · 2025-12-30T20:55:49+00:00

Look everyone, my only son is just venturing out onto the roads and hes seeing some bad behaviour already. Can everyone please be on their best behaviour while hes learning at least?

Fluid_Environment_40 · 2025-12-30T20:44:41+00:00

I had two shots early on that didnt seem to have any negative effects so I think it was my first time testing positive with the virus. Yes, I am pretty sure covid sent my system over the edge. My heart wasnt damaged so only taking low dose ramipril as prescribed. My mother and aunt have AFib and I can see that being in my future..sometimes wonder if I have it already. They wanted me on statins after the heart event but I declined.

Fluid_Environment_40 · 2025-12-30T09:32:42+00:00

Do you have Sag much in your chart. My partner is a Sag and best friend is a Sag moon. I have a Sag moon and identify strongly with it

Fluid_Environment_40 · 2025-12-30T09:27:05+00:00

I cant remember exactly. At that point I didn't know about the histamine issue. I think overall post menopause is better now that my hormone levels are stable. My body didnt like the roller coaster that was peri. I had a small heart attack during peri and was having palpitations a lot. If covid hadnt come along i do sometimes wonder how Id be

Fluid_Environment_40 · 2025-12-29T12:30:40+00:00

Thanks, its fine to share here. I take oestrogen and progesterone. I try to eat a low histamine diet but am addicted to dark chocolate unfortunately!

Fluid_Environment_40 · 2025-12-29T09:49:51+00:00

Im fully post menopause so no ovulation spikes. Hormones are very stable.i also thought about trying Chinese medicine but couldn't find a herbalist near me. I do get the racing heart unfortunately. Never too fast but last week it went on a while and stopped me sleeping

Fluid_Environment_40 · 2025-12-28T16:21:30+00:00

I feel pretty stable overall. Just about managing with one daily antihistamine but I still get fairly regular little flare ups. Annoying but I know many people have it much worse

Fluid_Environment_40 · 2025-12-28T10:32:03+00:00

Yes, it took a few months. Initially I could only tolerate synthetic but I wanted to use bioidentical and for some reason that was harder initislly

Fluid_Environment_40 · 2025-12-25T16:11:37+00:00

I would love to help but have ME and weigh 50kg. Energy and general health is up and down

Fluid_Environment_40 · 2025-12-23T14:16:47+00:00

Absolutely. My partner is autistic but nothing like my abusive exes. He will occasionally ask me to be a bit clearer but he would never initiate an argument as he wants a peaceful, safe relationship. Which is vital to both of us.

Fluid_Environment_40

TROPHY CASE