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@Holinger Thinking of you and everyone else. Always reminds me of my time in Sydney back in 1982 on my OE (overseas experience) and we had a heatwave for a few days, 42 degrees C, never experienced that kind of heat in NZ. I didn't know what to do with myself, no air conditioning where I was...

I wake up Ok these days at moderate the majority of the time but I have had my share of feeling awful when I was severe. I am still needing a lie down throughout the day and trying to keep PEM at bay as much as I can.

It does sound like you experienced the same thing. And you are right in that it wasn't vertigo in the way that makes you be sick. Mine has improved but it is still there. Yes, I could be vulnerable to falls the older I get because of it. I get through 5-6 liters of milk each week so hoping...

Thanks Mij. I wouldn't be surprised if it was a separate thing from the OI. I had so much going on it wasn't funny. I also have POTS like symptoms. I had mentioned about shower thing a number of times and I don't think anyone apart from you had the same problem with needing to place the feet...

I will have to check whether I have already post in this thread but just while I remember a few things I found it really hard for years to move my head quick enough to cross a road. It felt like my head was filled with fluid and turning my head from side to side made me off balance and my gait...

I can't recall oversleeping since I had ME. I've lost so many hours of sleep these 30 years that whenever I manage a extra hour here or there it is a thankful bonus. One thing that I did find extremely unpleasant in my severest years was having fallen asleep in the afternoon for a few hours and...

In my severer years the OI was so bad I would have to stand with my legs as far apart as possible to keep a balance. Some days I was so weak I was even trying to hold myself up with the added legs far apart. Not a comfortable feeling and very concerning experience over and over. I eventually...

I don't drive but if I did I think I would avoid these car parks for safety.

I've only noticed colds and Covid having the affect of what feels like the ME being switched off temporarily. From what I could gather from my Covid infection a year ago it was about the 8-10 day after infection when I noticed the ME brain heavying back in again. I spent two days feeling shocked...

This is really getting interesting and I have been thinking more on this this morning. I do think this is a strong lead and has quite a heavy bearing on what I think caused my vulnerability to getting ME. I had a significant reaction to a medication at 20 years of age that left me with...

Yes same here with the weakness that comes with delayed PEM. For me, fatigue is only a part of ME and I don't always have it. ME has always made me feel very ill with many multitudes of symptoms. Also, very severe and severe ME symptom wise were like x 100 compared to what I experience now at...

For me it felt like the impact of side effects on top of the ME were too intolerable and it did feel like the ME severity was interacting and messing up metabolism of some medication. I did not tolerate antidepressants, prednisone, and the Panadol brand 'Pams' dropped my blood pressure suddenly...

I tried to Verity but it is night time here and my brain is fried after a big day. I will come back when rested.

I've just spent the last hour trying to write another post and what a mess that all was. I will write more another day when more rested but for now it felt like the ME chemical processes were very antagonistic in my severer years, so meds were creating further impact and not helping but...

This was a very real problem for me in my severest years. It was significant and something I will never forget.

Some symptoms yes but overall I don't think so. I think we would be more aware of elderly hitting very severe ME after 60-70 years of age if there was a ME process going on.

The first thing I do in the morning when I get out of bed is to go straight to the jug and turn on for a cup of tea, then off to the bathroom. Once the jug has boiled I make a cup of tea and head back to bed and I won't get up again until I have finished that cup of tea. The purpose is to...

I've always been a big milk consumer and get through 6 liters a week. I hope this helps keep my bones as strong as possible. I have wondered about the impact of all the bed rest I have had to do the last three decades. But I would rather the bed rest and any impact of that than returning to very...

Interesting. Yes, I am coming around to this now. I think in the future when people ask me what illness I have I will say ME/CFS. I can't bear saying CFS alone. I will still say ME on the forum though?

I had to force myself to eat as well. I did have some windows of opportunity where I suddenly had an appetite, usually late in the evening. Not often due to severe PEM but when I did I would eat as much good food as I could when this happened. I should add that this was in my severer years.