Life with ME

  • I find mild to moderate ME such a blanket label for the majority of sufferers in this category- we are still drastically affected by the illness in the sense we may no longer be able to work or work very minimal hours, for many of us our careers are lost , years of opportunities lost on being able to be financially independent. We lose our dignity, the respect of others snd face disbelief due to the stigma attached to the illness snd the fact that many of us appear well on the random occasions that we look our best .

  • Community Moderator

    As a term, I very much agree that 'mild ME/CFS' does a very poor job of sounding as debilitating as it is (while not taking away from the fact that severe ME/CFS is very, very tough). I'm not great with names though - but a 'tiered scale' that started with a less 'gentle-sounding' bottom tier could well be helpful. Alternatively, continuing to raise awareness that 'mild ME/CFS' is still a tough thing to manage could be an approach?

  • I agree Maria. I've had the mild to moderate version for 8 years and have have been unable to work full time since I came down with it. I'm much better now and can do a lot of things I couldn't do when I first came down with ME/CFS, but I can't do the 9-5, 5 days a week thing. Most casual work is in retail and can demand double shifts or 6 days straight or early starts one week then night shifts the next. Its tough and I just can't access that kind of work. A further point on the mild to moderated label is that it can be the median condition over the course of your illness. Many of us can spend weeks in the 'high' moderate to severe category then return to mild to moderate. So these terms are a bit elastic.

  • @MariaMaria
    I tend not to categorise myself. I usually tell people that I have a chronic medical condition that requires me to pace myself and imposes alot of restrictions on me. If people ask any more detail I tell them but most people say nothing . There is a big difference in reaction if you say you have ME ( in full) or just CFS.

  • I find it very hard to categorise myself into mild/moderate/severe. For me it's the fluctuations in severity that make it so hard to define. I have gone through weeks at a time almost completely bedbound, and the overall trajectory of my condition has been one of continuous decline. Yet during this last week I've been nearly asymptomatic (besides having to pace myself as usual). Of course even a 'good' week like I've just had involves taking 10+ pills a day, constantly monitoring my vital signs, and stopping what I'm doing immediately if any symptoms rear their head. So "asymptomatic" for me is still unimaginable for the average person.

  • @Rusty precisely! We can often have severe payback or post exertional malaise leaving us bed bound sometimes for several days to several weeks ! That is what I find exasperating and disheartening- when we suffer severe PEM we can be almost at the moderately severe end of the spectrum . Many of us still can’t work, perform everyday tasks that require a great deal of energy such as housework, shopping , looking after others and any form of exercise we may be fortunate enough to do is inconsistent day by day 🙏 Many of us don’t have a fraction of our lives back .

  • @Noel Great point!

  • @river yes I find that with myself also - it is so hard to catergoride oneself when one’s symptoms change and fluctuate and ones level of functioning can significantly vary from day to day and week to week .

  • For me, outsiders and even close friends don't really see the reality of the disease and I think that's why there is such a sense of isolation. Only on my very good days can I talk on the phone or have someone visit for a very short time (1/2hr -1hr) before I start to feel myself going back into PEM. During that time I'm told I'm looking well or sound well, but it's the aftermath that they never see.... The week in bed in a crash and the weeks after that trying to get back to the point where I was at before the visit. No one except my family sees me when my symptoms are most severe and I think this is why the disease is so hard to understand for others.

  • @SandyAtHome I agree. I tell people if the see me, then I’m having a good day. They won’t see me on a bad day. It is such a complex, fluctuating illness that I myself have difficulties understanding it, let alone trying to explain. I say complex chronic medical conditions and leave it at that. I agree that the term of moderate or mild is an understatement of the symptoms of the illness.

  • Community Moderator

    @SandyAtHome totally agree. No one sees the aftermath of even the effort of a phone call and very hard to explain to people that saying "you look well" makes you wonder how awful you must've looked the last time you saw them if this is an improvement of if they see you at all.

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