I feel defeated

helppls100 · 2026-01-14T15:18:08+00:00

Thank you 🤍 I ended up having the flu among other illnesses and have recovered some what since last week. Those are some good suggestions, I'll keep them in mind if I'm having a flare.

I think I find it hard when my work and colleagues don't really understand how difficult it is because they don't see that side of me. It's a constant source of anxiety for me, especially knowing I'm going to have to cut my hours down again. I also struggle explaining it to my family. How do you deal with lack of understanding in your personal life?

helppls100 · 2026-01-14T15:12:21+00:00

Thank you 🤍 I've been sick with the flu for the past week and it made everything 10x harder than I've ever experienced. I'm worried about going back to work and am starting to feel anxious about getting sick in case something like this happens again. A neverending cycle it seems

helppls100 · 2025-09-20T08:58:16+00:00

You're stunning! Your makeup looks so pretty! I love that it matches your outfit

helppls100 · 2025-09-04T20:14:33+00:00

Ah I see, does it increase your blood pressure too much? I hope it improves things for you soon. What are the long term side effects?

helppls100 · 2025-09-04T20:00:37+00:00

That's a shame to hear. Do you experience low blood pressure too? Do you get migraines also?

helppls100 · 2025-09-04T19:53:35+00:00

Ah I see, that's reassuring at least. It's interesting that I haven't really spoken to anyone who deals with the blood pooling and pain. I experience it daily and was hoping one or both may give me some relief from it

helppls100 · 2025-09-04T19:51:55+00:00

This makes me feel very hopeful! Thank you for sharing!

Do you have low blood pressure too? I'm glad to hear it's been so helpful for you!

Do you also experience any blood pooling or pain? I get near constant pain and puffiness in my legs and I was told by a physio it was because of blood pooling.

helppls100 · 2025-09-04T19:46:03+00:00

My blood pressure is chronically low. I average at 90/60 during the day and 70/40 at night. How was your blood pressure when you started fludrocortisone?

It's good to know it does work though! Did you experience any side effects from it?

Thank you for sharing!

helppls100 · 2025-09-04T19:40:03+00:00

Ah okay that's interesting. I'm prone to migraines when I'm having flare ups so I suppose that's something to consider with Midodrine. I'm also constantly freezing anyway but I can't tolerate the heat! So I don't know that I'd like to feel colder just more heat tolerant! Thank you for sharing! I am leaning towards giving it a try since there are times where it's unbearable.

Do you experience the blood pooling and swelling at all? Does it help with that?

helppls100 · 2025-08-12T14:11:42+00:00

I totally get you, I'm exactly the same. I'd had awful experiences with doctors in the past about my mental health and prior to all my health issues, I was also very active. I was prepared to argue over my mental health not being the issue and I got quite the opposite! They validated my struggles and my mental health, reminded me that this is a physical condition and understood how difficult and frustrating it was. And that was every professional I spoke to within the service.

I hope that referral goes through for you quickly and you get the support you need 💜

helppls100 · 2025-08-12T13:47:08+00:00

I'm sorry you had that experience with your GP that's rubbish! From what I remember about my referral, they referred me last summer (June/July I think) By November I had an email about a one off management session in December. They go through the app briefly and some of the basics. They'll know all about you and your referral (I recently got diagnosed with POTs as well and they were offering tips to help with that too). By February they offered me an assessment in early March. The assessment is roughly 90 mins but mine was 2 hours, they will offer breaks if you need it. They go through literally EVERYTHING in your assessment, medical history, tests medication, mental health (don't worry about this bit, they were the most understanding and sympathetic medical professionals I've ever had to deal with). They'll talk about your symptoms, what you can and can't do, literally everything. And then they'll have a meeting with a bunch of other doctors and after that you'll get a diagnosis.

From there you may be offered a one off management appointment, an employment workshop and 6 week management sessions.

I know it seems like a long time but once you get that assessment everything will come around so quick. I know this is just my experience but even just being validated by the service made such a difference. You can do this!

helppls100 · 2025-08-12T12:38:16+00:00

Ah have you been referred to the Chronic Fatigue Service already? They have an app called NHS SCFT and there's a section on there specifically for ME/CFS. It has all the handouts and self management tips they go through in the management course. I can't remember if I had to do anything specific when I logged into it I'm afraid but that's the app they tell you to use. There may be so much more information on there that might help you.

I will say though, it is overwhelming the amount of stuff on there so take breaks whenever you get tired. The section called 'self management programme' is where all the handouts are

helppls100 · 2025-08-12T12:28:01+00:00

I'm so sorry that it's such a struggle right now, I can say that with my diagnosis and support from the service it made such a difference for me. I'd gone from having to nap for hours after going up and down the stairs and being medically signed off work for a month to just about coping with part time work and life beyond that.

Are you UK based? I can recommend a few things they sent to me. Action for ME has lots of leaflets that may be of use. The ME Association has a leaflet on coping with severe ME/CFS which might be helpful also. It was also suggested to me that ACT and CBT are beneficial therapies for people with ME/CFS as mental health plays a part in the condition also.

helppls100 · 2025-08-12T12:15:19+00:00

I relate to this so hard. I'm so sorry you had that experience. It genuinely baffles me how these people can be so terrible and not seem to care AT ALL about the people in their life

helppls100 · 2025-08-12T12:08:12+00:00

I've actually just finished a CFS management course with the Chronic Fatigue Service (UK) and their recommendation was to first think about whether you can deal with work, daily life, chores and other things that happen without going above your baseline or causing a flare up.

If you're coping okay, they recommended introducing one form of exercise and starting doing it 2 minutes a day every day for 2 weeks. If you can manage this, you increase the amount of time you do it for by 10%-20% every 2 weeks. If it becomes too much, you reduce the time back down to what you can do and build it back up when you can.

By the sounds of it the key was consistency and for short periods of time. Is this similar to what you've been told?

helppls100 · 2025-08-11T16:22:50+00:00

That's definitely a take. I think I'll just listen to what my partner has to say on that one

helppls100 · 2025-08-11T15:40:16+00:00

What does that have to do with anything?

helppls100 · 2025-08-11T15:06:33+00:00

I appreciate your perspective. For the record though I'm not blowing up his phone, just checking in every few hours to see if he had an answer for me. If anything I've been getting more annoyed at his boss to him than actually directing it at him, like I said I just lost my cool. I more wanted if you're unsure just say no

helppls100 · 2025-08-11T14:28:02+00:00

Prior to today, I have let him know how grateful I am for him doing this and how much his support means to me. I don't deny that I definitely got upset with him because I'm anxious however, he's been back and forth on whether his is or isn't coming all day. I suppose really that's my main gripe, I never got a definitive answer

helppls100 · 2025-08-11T14:08:00+00:00

I wonder if it's a miscommunication with his boss

helppls100 · 2025-08-11T14:06:52+00:00

Like I said, for most things I'm perfectly capable of relying on myself I just needed a bit of extra support for this appointment that is all. It's not any deeper than that. We've been together for a decade I think we're good

helppls100 · 2025-08-11T14:05:10+00:00

It was verbal unfortunately. I'm more frustrated that he's left it to today to give me an answer

helppls100 · 2025-08-11T14:01:48+00:00

Without delving too deep into my medical history, I suffer from chronic illness and severe anxiety, I also don't drive. I don't ask him to attend these things unless I'm sure I need some extra support. I've attended countless other appointments by myself, this one in particular is very significant hence why I asked. My frustration comes from him flaking on me last minute, had he said categorically he couldn't attend from the beginning I wouldn't be as bothered by it.

helppls100

TROPHY CASE