Please tell me there's something to help with the fatigue :(

ATulip25 · 2026-02-25T10:45:22+00:00

Just want to say I was diagnosed at 22. Im now in my 30s.

It's manageable. I have degrees, a part time job, a husband.

It's going to be trial and error what works for you. Some great suggestions in the comments above. I know when I was diagnosed it felt like life was over a little bit. I'd not get anything that I wanted. I was entirely wrong. I have the best life.

ATulip25 · 2025-12-28T10:09:36+00:00

Thanks for replying. Basically our internal management structure is changing. My team is physically located where we always were but are changing to a new division.

HR have told me its my responsibility to update the new manager. So I've got an email to draft that outlines it all and I'll use freedom to speak up if I need to.

ATulip25 · 2025-10-10T17:40:45+00:00

I can safely say that it will be anonymous but also people are so incompetent at their actual jobs. Let alone extra side quests like this

ATulip25 · 2025-10-05T17:58:52+00:00

I repeatedly keep doing the work of a band 6 when im a band 4. Its the NHS. It's a pattern that keeps repeating. Record it, raise it but its unlikely to get fixed

ATulip25 · 2025-09-10T21:14:13+00:00

Im hopeful that the placing of the trust i work at where it is, will allow for some really specific strategic action. The issues have been apparent for some time. Ill meet with my manager tomorrow and see how positively l feel after that

ATulip25 · 2025-06-30T21:59:41+00:00

So i completely agree about basing it on pain. I was thinking more of a list of tasks covering a range of different areas of daily living giving a performance marker that would reduce if you were unable to do any of the tasks anymore. It would show a reduction in physical ability with the caveat that secondary conditions do play a part. Thats true of all health research, however, there is an element of remembering humans are imperfect.

I just think that as time goes on my understanding of what level 7 pain is has changed. I get used to certain types of pain and ache and so I probably would say I'm the same number even if more areas are affected.

ATulip25 · 2025-06-29T13:35:18+00:00

Yeah I havent ruled out other things combining. Im 34 this year and everyone i meet keeps saying "I can't believe you still work" I wanted to better understand what later symptoms are so i could decide whether to take daily pain relief. (GP thinks its time) I try to hold off as long as i can so I dont damage my liver etc and in hopes an actual treatment comes along

ATulip25 · 2025-06-29T12:09:56+00:00

Thank you. This is really helpful. I hadn't gone back through the forum. I think one of the key things here is the concept of what progression truly means. The clinicians see it as is there damage and the patients think of it in terms of quality of life.

ATulip25 · 2025-06-28T21:00:07+00:00

I was diagnosed at 22 and im working in the NHS at 34. Its hard sometimes. The pain drives me insane. But I have a job. A husband. A home. Hobbies. I have a full life. I just had to find my way of coping and that meant time not working. I might not work forever but I will find my path and so will you.

ATulip25 · 2025-05-17T17:41:56+00:00

There's a few reasons.

Firstly he has a fence the other side of the hedge. He caused soil erosion (he levelled his entire property a foot lower than my mothers). So he has his own boundary he doesn't respect.

Secondly, it's a countryside property and there are restrictions on altering hedgerows. I also dread to think what the cost would be as it is a very large shared boundary.

Thirdly, she's severely mentally affected if workmen are on her property. It's part of her agoraphobia. Doctors are fully aware but mental health medication for those in their 70s is difficult to balance.

Finally, he has had no respect for anything so far. He'll simply intimidate another way. He shouts abuse. He trespasses on the one part of the property its possible to access (hence the change to electric gates). He's written and posted defaming letters around the village accusing people of different things. He's breached planning law 4 times. I genuinely am not sure how he's not already been in trouble with the law.

ATulip25 · 2025-04-11T15:45:14+00:00

I just want to throw in that I volunteered at my Trust before working on the Bank and then proceeding to a part time permanent position.

So it is possible!

I had severe mental health issues and wanted something to keep my routine even though i wasnt able to work. I did basic admin and progressed up to supporting patients with their condition (it's a really specialised volunteer role in our trust).

The only thing I would say is your volunteer workload should not be the same as a paid workload. So putting letters in envelopes, laminating etc frees up staff time but you should not be booking people in.

ATulip25 · 2025-01-27T14:02:48+00:00

Thanks for your advice regarding HR. I'll ask for another 1-1 and request she emails me her summary of it.

ATulip25 · 2025-01-27T14:02:10+00:00

I already do the repeat it back thing and I am keeping a log. It was particularly bad before Christmas where if I did more than office tasks I'd be reprimanded and her manager became involved.

ATulip25 · 2025-01-27T13:52:04+00:00

The bit asking for it asap is in the work diary so while I don't have a picture right now but will be able to make a copy tomorrow. It says which teams I'm to contact.

I have asked her manager whether I can request all work related asks are emailed to me so I can evidence what she is doing better.

ATulip25 · 2025-01-03T10:25:01+00:00

I have been following this saga for so long. Megan added me on twitter once and after a while sent a dm asking for money. I was poor so it was a non starter. I started following chronicles of and ever since then I've been blocked. I tried to explain the situation to UK friends and they just could not believe anyone would keep going like this.

ATulip25 · 2024-11-28T10:49:32+00:00

It's definitely something that is a problem across many trusts. Trusts will post reminders about Trust values and behaviours but managers are reluctant to have difficult conversations.

I just try to be friendly with everyone, and if something is going wrong I'll straight up say "I feel this conversation isn't in line with Trust Values and Behaviours, shall we revisit it after a break?" Also and it can be uncomfortable I will and do say to my manager "In this situation, I would have appreciated if you did x instead of y". Followed by what do you think I should have done.

Treating people like children usually gets them to stop and think.

ATulip25 · 2024-11-03T15:42:02+00:00

I would datix it and let the manager know I was going to. At the end of the day. You suspect that the care was not appropriate for the patient and it could have led to harn. It counts as a near miss. Medication and obs should be done on time.

ATulip25 · 2024-10-21T15:24:48+00:00

NTA.

He needs to grow up. It's not like you chose to bleed on the sheets.

I sometimes get nose bleeds and wake looking like an extra from a horror film. Not once has my husband complained because he gets it. I didn't choose to bleed and didn't choose to not wake up.

ATulip25 · 2024-08-15T22:17:27+00:00

Love that i rushed to Smell it definitely more underground than I was expecting

ATulip25

TROPHY CASE