The me no one knows - SI warning

@Flutterbug9 my chronic fatigue impacts me mostly through:

• inability to work fulltime, and part-time work taking everything I have causing inability to look after myself
  • inability to then cook, clean,
  • inability to exercise (5 min can be tiring even depending on what it is)
  • inability to tolerate social situations (unless they are 1:1 with a meaningful conversation)
• increased pain and tenderness in muscles (fibromyalgia is possible, but there is no set diagnostic criteria/test really, however a rheumatologist did not diagnose this but did not say why he did not think so - but he only did a video consult, not a face to face)
• often when I am sick with a cold/flu it can be for a prolonged time. I have been fortunately that when I had covid it was not severe or prolonged (but I did have vax, so maybe that helped too). Once I had flu with continued symptoms for 6 months, after which night sweats remained for 1.5 years until my next major flu infection

I found out the other day that when my uncle had long-covid the local government paid for him to have a cleaner whilst he recovered. I am glad he had this, but it also is disappointing that these clinics & supports are only available for long-covid and not chronic fatigue, given that it is now well accepted & recognised that both conditions are very similar (albeit cause by a different infection or sometimes unknown for CF). However pre-covid many doctors did not believe chronic fatigue was a real condition, and some would tell patients it was all in their head. Thankfully my doctors never said this - although I have had doctors (like my current one) who just completely ignore it without comment. There is no reliable thing that helps most people. Some people say acupuncture helps them, others find herbal supplements / neuropathic treatments... I manage by lifestyle modification and also remedial massage.

I don't remember if I commented yet re: your pdoc appointment? I know I was planning to and knew what I wanted to say! @Flutterbug9

I hope it goes well 😊. How do you feel with the wait between now and June? (knowing also that sometimes they can get moved closer if someone cancels - my MH GP appointment this actually happened for which was nice and unexpected).

I really like that you are writing everything up and giving that to them. I hope it makes it much easier on the first appointment. I think this is a really good idea, and I liked your suggestion to me also (I think it was you? if not it must have been CS. Gosh my memory is being bad sometimes lately) about doing this with my medical history for the MH GP to avoid the inaccuracies of the other report. She can always get the other report if she asks or if they want to get a copy of my medical history from the current/normal GP.

I am impressed they have a system that you upload to yourself. 😍. This is such a great idea! I just haven't been to a practice that allows this before. 😊

Back to cooking for a bit now!

Woman I knew couple yrs ago and turned out to be narcissist ‘friend’ has MECFS. I’d get in trouble for not considering her health and limitations. When asked to have the limitations, impacts explained to me, she would change subject, distract etc. vicious circle. My nervous system starts to detect any even with slight connection and projection walls go up ie, shutdown @AlwaysMyself

@AlwaysMyself Suggestion to make your own notes, part from previous job, part from personal experience.

I’m used to the routine by now. GP provide health summary plus blood test info (where appropriate). Patient info form from specialist request me to provide info about current meds, past medical history etc.

I’m a person who prefers to have the info so I know specialist get correct info.
with my medical history of procedures, meds, allergies, is a lot of work first time, well worth it though

’trauma spreadsheet’ was suggestion from person on BB. Allowed me time to deal with the associated emotions, allowed me to provide timeline using various sources. Less emotionally taxing then trying to remember time line and events in person, specialist can read and then ask questions.

put bits of explanation who is who in relation to me etc. OMG, 2 A4 pages with normal margins and average size font

the ‘complete waste of time’ (as gets referred by) pdoc I had initial appointment with only few weeks after referral. Due to having been trying to find new pdoc with vacancies for last couple yrs, 5mth wait is nothing.

program Halaxy. Appears to be very interactive. Both my MH specialist also use an AI program which assists with all the notes. Way it was explained, program runs during the appointment then condenses everything into small file which (can’t remember is 1 or 2 steps), get electronic linked to my file. Idea also being, easy, quick retrieval for specialist to assist with knowing what was discussed at previous appointment

@MissGremlin @Captain24 @AlwaysMyself @Cuddlebear

3 out of 5 jobs done today, better than recently. One took longer than was planned and emotionally draining.

ordered some Lego …. Yeah!!

managed to get 2nd floor of Lego building done in between one cat wanting affection (thinking she’s knows I’m far from my best).

boring grocery run and chores tomorrow morning. Hoping to find out more about new activity I saw glimpse of info about yesterday.

1hr croquet demo game late Saturday morning. Local management promoting different activities here that day. Saturday predicted to be 38, Yuck!! Monday and Tuesday both predicted to be 30 and over.

Want to investigate few local specialty stores, appointment etc for fitting on supportive female upper undergarments. Be at least 2 weeks before will have 💰to do anything

saw this earlier and immediately thought of @MissGremlin @Captain24

Food and try for early night. 4hrs sleep max a night for about a week is taking its toll. Not even my sleep meds are helping ☹️☹️🥱🥱

@Flutterbug9 you've done so well to get 3 of 5 jobs done today sweetheart, well done ☺️.

Oohhhh yay to ordering Lego, it's always so exciting.

Great job of getting the 2nd floor of Lego building done. Animals are amazing at picking up when we are feeling off.

Hope the grocery run and chores go smoothly and quickly for you tomorrow.

The hot weather coming up is horrible we have a couple of days where it's going to be 40⁰, I'm really not looking forward to it. Hope croquet goes well though even with the heat.

Hehe oohhh i love that picture, so relatable 😂.

I feel you on the sleep sweet, i get 2-4 hours of very broken sleep a night and it's most definitely not enough. Hope you can get a good night's sleep tonight, sending you love and hugs ❤️.

@AlwaysMyself @Cuddlebear

Thoughts re whether to share something’s with me or not

(not intending to sound rude, nasty, condescending etc)

- does decision have potential to be viewed as controlling what and who is tagged?
- this is a public forum where everyone can read any post

- if, for whatever reason, choose not to tag a person, they can view, read and know who was tagged.

Last post on this subject, giving bit of insight how I’ve been feeling.

Won't mention it again. no benefit to any of us

@Flutterbug9 i hope i didn't say anything wrong to upset you sweet.

You ok @Flutterbug9? If you have some concerns about the forums please do reach out to us 💜

All good @Jynx

Bit of confusion happened. Focussed around concerns about tagging me in somethings might upset and/or trigger me. Care and concern that bombed and resulted in opposite happening.

@MissGremlin you have not done or said anything that upset me.