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I don't like the use of 'bluerrgh' to describe how a ME patient can feel.

One of my many symptoms that I have experienced with ME is swelling around the eye and eyebrow area. Sinus problems has been a part of my ME, and it may not be the run of the mill kind of sinus problems but extra ME input weird stuff. I notice the puffiness from time to time. I have had the 120...

Yes, I agree. I know all about it. I have experienced the hell of it.

When I first came to the forums I use to wake up in the mornings hoping no one had quoted any of my posts and even today I still feel a sense of relief when I can post freely and not worry about having to reply to one of my posts being quoted. If I do get quoted, often I can only do a like in...

One of my first bad bouts of PEM in my earlier years when I didn't know I had ME was from a long 5 hour return car trip. I remember when we got home to my brother's house I sat down in the lounge and told him and everyone that I feel really ill. It was all going to get so much worse years later.

Cognitive and emotional exertions (goes both ways, input from environment and my efforts) will make me nauseous, more sensitive to light and sound, irritable, great need to lie down and away from any noise, insomnia will worsen, wired and tired, poisoned feeling. I can't take a lot of other...

I wish I could show a photo of me taken with my mother and brother 2 years after my very severe ME onset. My mother and brother had healthy tanned beaming faces and my face was pale, my eyes had the ME look. I've seen that same look on other ME's. It's quite shocking for me look at that photo...

Paracetamol works for most headaches but I do have bouts where I need to follow up the paracetamol with Ibuprofen within a hour for a more severe headache. I haven't tried aspirin in over 40 odd years. I did buy a packet recently as I heard it was good for a sore throat but have still yet to try.

I see I missed adding 'Immediate PEM' to my list of PEM types. Cognition is always affected with my ME, which I think made my earlier years of ME very hard to work out what was happening to me.

Just to add to this @Louie41 It wasn't until I hit very severe ME that I was able to look back and recognize PEM in my earlier years. In my earlier years I was describing symptoms as unusual and ' something very wrong'.

I'm now trying to get my head around how managed ME levels fit into the picture. Do I call myself a very severe ME that is now a managed moderate or do I call myself a managed very severe ME that is now moderate.

@Louie41 This reminds me of my early years of ME when I didn't know I had ME. When I knew something was very wrong. It is possible that you are managing to keep at this particular level all these years. Are you resting lots each day? It wasn't until I reached very severe ME that PEM was without...

@Louie41 For me ME is PEM. It is what keeps us locked in to this illness. A repetitive cycle. The differences are in ME levels and type of PEM experienced. The severer the ME level the worse the PEM will be. Then there are the PEM types: 1. Rolling PEM, experienced to the degree of the ME...

@Hutan Just for myself. I remember when I was at my sickest I was too sick to talk or sit for long. I was very distressed that someone would make me do things that would make my terrible situation worse. The less involved the better it was for me. If anyone remembers having to go to A@E in a...

The switch occurs from usual to unusual when healthy fatigue/tiredness/exhaustion becomes an obvious disease, illness. You know there is something very wrong. Same with other symptoms of ME.

I haven't caught a cold, flu or Covid for the last 3 years which is very unusual for me. I still go out double masked and sanitize my hands. I catch buses and trains around people with obvious colds, probably Covid as well. The masks do work very well along with sanitizing. To leave masks off...

I didn't reply their email due to other health problems that surfaced.

Glancing at mention of the cognitive side of things a good example of how ME has affected me cognitively is that I only read a tiny paragraph of rvallee's post and even though I liked everyone's post I still have yet to read. This is because I get too mentally exhausted to post so I quickly say...

Just recently I was speaking with a neighbour about plans to travel to America for a very short trip in the next couple of years. I said the problem I will have with ME is that I will have to spend afternoons and evenings lying down - so I would not be able to do much sightseeing. Not to mention...

I think I might have been too quick to answer this poll. I can't remember back to 1995 and the first weeks after my ME onset. ME has always felt to me that once I got it, it has never left me. I feel it there. I know how subtle ME can be as well at times. But that is not accurate enough for a...