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ME/CFS people working full-time (or close to)? What is life like for you?

Messages
2,087
@leokitten I am in a similar position to you. Still working full time and have almost no support if I can't. I am still in my first year of this and hoping I can keep working for as long as possible.
Reading this thread scares me a lot, I would like to know how many people out there are still working with ME. I am hoping this forum is biased toward the non workers but that is hope more than anything.
Also would like to know how many people get progressivly worse and if exertion is linked to this or if it would happen anyway. It's probably hard to know this, I think a lot of people believe if they rested more initially they wouldn't be in as bad a situation now, however do we know this ?
 

meandthecat

Senior Member
Messages
206
Location
West country UK
I wish I could work less, but I need to work. I need the money but I also need the structure. If I do too much much I crash but if I do to little then I slide way down. It feels like Orthostatic stuff. It seems that the activity holds it at bay but too much and payback is a bitch.

I am really good at pacing, I know when to stop to the second, there is a sensation like a quiet voice that it is too easy to ignore. I can do this at work but elsewhere I find it so tough and often fail. I feel like a shark that must keep moving.

The more I move the more I hurt but that gets worse when I stop so I start again postponing the pain, endorphins rule, whiskey is good and anger is a gift.

Someone get me out of here
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Only just discovered this thread for some reason. The general impression of all the messages seems to be that trying to carry on working will lead to a severe crash sooner or later, which, like @leokitten, is just what I don't want to hear. 6 months ago I could work 20-25 hours a week and be fairly symptom free the rest of the time with very disciplined pacing. Now I'm down to 15 hours a week, 20 at a real push, and the rest of the time I am fairly symptomatic (mostly headaches and exhaustion that put sitting at my computer at home out of my envelope). I seem to have had a very gradual decline over the last 6 months, but am still a lot more functional than most here.

Being self-employed, I have stopped looking for new work. I should be in my prime now, working at least 40 hours a week, getting new customers, having ideas, building things up etc. etc. Instead I am just about managing 15 hours a week, often teaching feeling tired with a headache, and spending the rest of my time on the sofa or in bed. I'm very lucky to have a supportive family, so I'm excused from shopping, cooking and housework and can rest during the day. Without that support I'm sure I'd be completely stuffed and unable to look after myself, work or anything else.

I'm not giving up work voluntarily any time soon because a) we need the money and b) I love my job and haven't spent years building it up and getting good at it to just throw it away. The messages on this thread suggest that I might regret that decision, but what else can I do? I am just about navigating the German medical system, but the thought of navigating the German social benefits system (which officially classifies "CFS" as psychosomatic) makes me feel more ill, it's a last resort that I'll only do if I absolutely have to or they change their guidelines. Court cases, clueless psychiatrists sent to my house to write lies about me - not unless I have to thanks.

As far as colleagues are concerned, they still know nothing (except for a couple). A couple of nights ago I went for a meal with my colleagues (I shouldn't have done, but I did). I walked from the car to the restaurant with one colleague and said "I'm sorry, but I have to walk slowly". She of course was immediately concerned and asked what was wrong, so I said "It's complicated, I just have to walk slowly" and left it at that. She can think I've got a dodgy ticker if she wants. If pushed I would have said that I have a neuro-immune disease that is being investigated and left it at that. I managed two hours in the restaurant, it was too much and I've been paying for it for the last two days.

On Thursday I'll be sleeping in my car again between customers. So much on this thread is familiar.

I am still hopeful that my baseline can improve back to where it was with discipline and pacing.

@Ellie_Finesse I remember your first thread here and was recently wondering how you were doing, as another teacher who doesn't want to stop. Hope things go well for you.
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Like many of you, I suspect, I read this thread thinking:; " I thought I was the only one who felt like that!"
In our society it is a badge of honour to work long hours, to overdo it, to push through the pain, to keep really busy. I spent so many years in a fog of shame of what I was unable to do, of how I had to spend most of the weekend and every evening in bed...no social life...and I was sick all the time, and pushing myself on coffee and sugar and painkillers to keep going... I had several episodes of long periods off work and then returning after some weeks/months off only to repeat the pattern.
I haven't worked for 2 years and at the moment can't see how I could work even a few hours.

I feel so sad for all of us reading this thread..and yet it also feels so healing that we can support each other in our struggles.
 
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Ellie_Finesse

Senior Member
Messages
192
Location
UK
@Ellie_Finesse I remember your first thread here and was recently wondering how you were doing, as another teacher who doesn't want to stop. Hope things go well for you.

Hi @TiredSam I am managing a lot better than I was and thats thanks to the advice of everyone telling me to stop. I took the advice and did exactly that, stop! I went on the sick, again, and all I did was spend most of time resting Mostly in bed and if I felt well enough I pottered and sat in chair. Then in August I spent the next 4 weeks doing a little more adding in little walks once a week and normal everyday things with lots of resting in between.

When I went back to work in September, I made the mistake in trying to keep up with activity levels outside work. Hence the crashing again. So I made a decision to cut all activity level outside work. Am hoping its foing to work! Now, if I'm not working I do nothing. I often forget that doing nothing includes having breaks from anything that stimulates the brain o_O

This pacing is very hard to work out and am only just about managing it I think. My inner child came out yesterday, was the first time I felt almost normal at the weekend for a quite some time. I did rest lots but I got over excited and sort of forgot that excitement is just as bad and can set me back a bit. Whoops..... Am sort of feeling it a bit!!

I'm not giving up work voluntarily any time soon because a) we need the money and b) I love my job and haven't spent years building it up and getting good at it to just throw it away. The messages on this thread suggest that I might regret that decision, but what else can I do?

I can echo that, I absolutely love my job, its working with these amazing kids that makes me smile and keeps me sane. It gives me the most satisfaction to watch these kids achieve even the smallest amount. I feel privileged to be apart of that! So for me, yes I do need the money, we need it to survive, but being part of something so rewarding is what I need more.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Hi @TiredSam I am managing a lot better than I was and thats thanks to the advice of everyone telling me to stop. I took the advice and did exactly that, stop! I went on the sick, again, and all I did was spend most of time resting Mostly in bed and if I felt well enough I pottered and sat in chair. Then in August I spent the next 4 weeks doing a little more adding in little walks once a week and normal everyday things with lots of resting in between.

When I went back to work in September, I made the mistake in trying to keep up with activity levels outside work. Hence the crashing again. So I made a decision to cut all activity level outside work. Am hoping its foing to work! Now, if I'm not working I do nothing. I often forget that doing nothing includes having breaks from anything that stimulates the brain o_O
That sounds exemplary, thanks for sharing, I should probably do the same thing. I think there are still some things in my free time I could stop doing and feel better for it, for example I should tell a friend who comes around once every couple of weeks to drink a beer that I don't have the time / energy for it any more, I should stop my voluntary work teaching homeless teenagers, and I should stop trying to keep on playing music. I'm down to the things that would be really, really painful to give up.
 

Ellie_Finesse

Senior Member
Messages
192
Location
UK
Volunteering to teach homeless teenagers is a very kind and selfless thing to do @TiredSam! I admire anyone who goes above and beyond to help others, especially when they are either sick or struggling with life themselves.

I am guessing that your reasons are similar to why I have this need to find a way to continue doing the job that I love. I believe that doing what you enjoy, is what will help to keep you sane and not cracking at the seams. It brings some normality and purpose!

I maybe wrong for saying this, but I think, if you can, you should keep doing it and if you feel that your health is worsening then stop.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I think I'll keep going for a while longer, and if I have to I'll try reducing it (once every fortnight rather than once a week) before stopping. As you say, the things that tire me out in one way are also the things that keep me going in another.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
Me, personally? My short term disability covers about 12 weeks at full salary, which I've used when I've needed to...

And then after 12 weeks, the short term disability goes to 65% AS DOES the long term disability.

I'm saving up as much money as possible with tax deferrment and trying to get as many raises as I can before I reach the point of being completely unable to work to try to maximize that 65%.

If I end up not being long-term disabled, still ok... but I figure it's more a matter of just trying to keep going and maximizing as much as I can to prepare myself. (things like the house I bought being where I don't have to use stairs to take care of myself, kitchen 5 feet from bedroom and bathroom, etc.).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Reading this thread scares me a lot, I would like to know how many people out there are still working with ME. I am hoping this forum is biased toward the non workers but that is hope more than anything.
Also would like to know how many people get progressivly worse and if exertion is linked to this or if it would happen anyway. It's probably hard to know this, I think a lot of people believe if they rested more initially they wouldn't be in as bad a situation now, however do we know this ?

For some of us the over doing things eg pushing ourselves to work, it was very obvious it made us worst till we couldn't do so no more, just like it can be quite obvious for some myself included that aggressive rest therapy can be the one big thing which can bring improvement.

Ive had this illness long enough (over 17 years) to know that over doing things, something which work did cause, made me a lot worst.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'm not giving up work voluntarily any time soon because a) we need the money and b) I love my job and haven't spent years building it up and getting good at it to just throw it away. The messages on this thread suggest that I might regret that decision, but what else can I do? I am just about navigating the German medical system, but the thought of navigating the German social benefits system (which officially classifies "CFS" as psychosomatic) makes me feel more ill, it's a last resort that I'll only do if I absolutely have to or they change their guidelines. Court cases, clueless psychiatrists sent to my house to write lies about me - not unless I have to thanks..

I know that story too well, your post could of been me speaking years ago. I put off leaving work due to all those things in your post, the problem is when we finally have no choice but to quit work fully, we still have to go through navigating the social benefits system but while we are then so much sicker and even more unable to navigate it well. It may mean appeal after appeal while you are even worst then you are now.

If you can only work 15 hours a week now and that is making you ill, now is probably the better time to start navigating the system and start fighting to get onto disability payments. Easier now that probably later when you may end up so ill you may not even be able to get to doctors who could support you etc. Find yourself a good ME/CFS specialist who will be able to back your need for disability support now rather then wait (as for this kind of thing your dr may need to have been seeing you for a while so leaving finding good medical support can be a very bad thing).
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Find yourself a good ME/CFS specialist who will be able to back your need for disability support now rather then wait (as for this kind of thing your dr may need to have been seeing you for a while so leaving finding good medical support can be a very bad thing).
That's exactly what I'm doing, working towards getting a diagnosis from the most credible institution I can, which in Germany is the University hospital in Berlin, where I have an appointment next year. I also have an understanding local doctor who has been through excluding everything else with me, and I'm a member of an ME support group full of people who have been through the mill of benefits claims who can advise me if my time comes. So I think I'll be as well informed and prepared as I have to be if I ever have to claim benefits.

I've gone back to more aggressive and disciplined resting since writing my last post and have been feeling the benefits of it in the last few days, I survived a huge day at work yesterday (up at 5am, drive 2 hours, teach 4 hours, drive one hour, sleep in motorway service station, teach 4,5 hours, drive 1 hour, home at 9pm). I managed it virtually symptom free due to aggressive resting for the 2 days before, and I'll be taking it easy for the next 3 days. Reading it back now, it sounds like a really stupid day to have done, but it was an exception. I told myself beforehand that if it caused any headaches or a mini-crash it would be the last time I do a day like that, but I seem to have got away with it. Why would I plan such a stupid day? Because occasionally my best-paying customers all want their lessons on the same day, and I don't want to turn away good money when I'm only earning half what I should be these days anyway.

To be honest I'm hoping I can keep going at my current level by tightening up my pacing and resting if need be, and that I just have to stay at mild/moderate level until rituximab or whatever else is going to save us comes along.

Thanks for your replies and advice.
 
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hellytheelephant

Senior Member
Messages
1,137
Location
S W England
For some of us the over doing things eg pushing ourselves to work, it was very obvious it made us worst till we couldn't do so no more, just like it can be quite obvious for some myself included that aggressive rest therapy can be the one big thing which can bring improvement.

Ive had this illness long enough (over 17 years) to know that over doing things, something which work did cause, made me a lot worst.
I love the term 'aggressive rest therapy' which I have not heard before. Makes me feel as if I am really doing a lot as i lie flat in a darkened room.:cool:
 

minimus

Senior Member
Messages
140
Location
New York, NY
I have worked full-time with CFIDS for the last 17 years. When I got sick, I was 31 years old and my wife was pregnant with our first and what would turn out to be our only child. The first few years of work after developing CFIDS were unmitigated torture. My company had just gone through a merger and this created enough internal chaos for me to stay under the radar during the period in which I became extremely ill (viral-like illness in September 1998 followed by 50 pounds of weight loss, unrelenting nausea for about 2 years, swollen spleen, culminating in what is laughably labelled as "fatigue"...as if not having the energy to inhale without exhaustion is the same as feeling tired. Walking a city block felt like walking neck-deep through an Olympic-sized swimming pool of thick molasses.)

Now, I am 48 and I continue to work as our family expenses climb, as my daughter has had some significant health problems develop in the last 5 years. My wife does not work, she has recurring depression and really doesn't care one way or the other about much in life, including me, how the rent gets paid, how her twice weekly therapy bills get paid, etc. I am the donkey pulling the cart.

After the first three years of illness, I became a patient of Paul Cheney. His bicycle ergometry tests at the time showed I had a worse case of CFIDS than the average patient in his practice, and almost all of his other patients at the time were fully disabled. He has been surprised that I have managed to keep working this whole time, although he has recommended that I have a disability assessment a number of times. In any case, Cheney's protocol really helped my condition to stabilize, so that by 2005 I was having less trouble continuing to work. The constant suffering and anxiety about severe relapses, the emergence of new symptoms, and the severity of the usual symptoms of severe fatigue, pain, insomnia, and cognitive problems lessened a bit. I compensated for poor memory and flares of brain fog by using my "healthier" periods to develop complex models that I designed to essentially update automatically. (I am an economist/statistician by training.) During bad days/weeks, I could then use these models to "skate" because of the built-in automation of the models. It also helps that nobody I work with has skills that are similar to mine. In fact, most of them are not analytical in the slightest, which makes me look good in comparison.

But work has taken all of my energy and left almost nothing else. I do not have any friends -- most fell by the wayside after I first became sick and I don't have any energy to maintain friendships now. My marriage is in tatters -- my wife and I basically avoid each other and I resent that she refuses to work, to share the burden of supporting ourselves and our daughter. We have avoided a divorce because we believe it would be too traumatic for my daughter. One of my brothers is sympathetic about my illness. My parents don't want to know about my health or my struggles, and an older brother is fully convinced that CFIDS is psychosomatic. When I see him, he loves to tell me about his P90X workout routine, his long-distance running regimen, his ski trips. (He is my financial adviser. If I had a spine, I would fire him.)

Work has become progressively more difficult in recent years. I have found that memory problems have become far more severe and my thought processes have slowed as I have aged with this disease. I have to make "to do" lists for myself at work. If I do not keep this list in front of me, I cannot remember what I have already done, what I have to do next, how to prioritize, etc. In meetings, I often have what seems to be a coherent, cogent thought, but when I start to speak I forget mid-sentence what I was trying to say and try desperately to find the trail of my original thought, sometimes only after a long awkward pause. As a result, my anxiety level about being "found out" as someone with severe cognitive impairment continues to climb.

I have to fly to Europe for a dreaded week-long business trip tomorrow, the first one since late 2012 when my health was a bit better, and this trip will involve both meetings and socializing...I have an enormous inferiority complex because, while everyone else talks about their hobbies -- skiing, bicycling, running, cooking, wine collecting, etc., their exotic vacation plans, their seemingly enjoyable lives, I have absolutely nothing to say because I have absolutely no energy to do anything besides work. In my free time, I try to take naps, watch TV (although I have trouble remembering the plot from episode to episode) and ingest a vast quantity of supplements. My cognitive problems also snowball into full-blown dementia when I have jet lag, so that is another source of fear for this trip.

I suspect that working non-stop while suffering from this illness will end badly for me. Although CFIDS is not a "respectable/real" illness to the general public, doctors, or insurance companies, I certainly have developed plenty of "downstream" objectively measurable health problems in 17 years of being sick (impaired kidney function, chronic sinusitis, vocal cord paralysis, uncontrolled GERD, recurring bronchitis, severe muscle cramps...all documented by medical tests ordered by doctors who still look at me like I am speaking Swahili when I tell them I have CFS.)

I am not sure what drives me anymore. To a large extent, I think CFIDS has destroyed my self respect. I feel it has twisted me over time into a defeated, worthless person who is not deserving of happiness or joy. So I keep working, because I deserve the suffering. And why not? There will be nothing left of my identity and I will be of no value to anyone else when I cannot work anymore.

Oh well, I apologize for this diary-like post. CFIDS is a catastrophic illness, whether you are able to work through it or whether it forces you to stop working or going to school. I suspect that at some point in the future, someone will have figured out that we really were objectively suffering from a severe disease and that we were deserving of scientific research, fair treatment, accommodation, and sympathy. That time cannot come soon enough.
 

meandthecat

Senior Member
Messages
206
Location
West country UK
Hi minimus. Wow I recognise alot of what you have experienced and the pain. The keeping on and pretending because otherwise the economics don't stackup.

I have not recovered but things have got better. It was the cognitive impairment that was the worst, stripping me of Myself. It has taken years but 'I' is back and with it an optimism.

I don't know if keeping on made things worse, it didn't feel like stopping would have made it better.
I have no answers, all I can send is my best wishes.
 

Battery Muncher

Senior Member
Messages
620
I have worked full-time with CFIDS for the last 17 years. When I got sick, I was 31 years old and my wife was pregnant with our first and what would turn out to be our only child. The first few years of work after developing CFIDS were unmitigated torture. My company had just gone through a merger and this created enough internal chaos for me to stay under the radar during the period in which I became extremely ill (viral-like illness in September 1998 followed by 50 pounds of weight loss, unrelenting nausea for about 2 years, swollen spleen, culminating in what is laughably labelled as "fatigue"...as if not having the energy to inhale without exhaustion is the same as feeling tired. Walking a city block felt like walking neck-deep through an Olympic-sized swimming pool of thick molasses.)

Now, I am 48 and I continue to work as our family expenses climb, as my daughter has had some significant health problems develop in the last 5 years. My wife does not work, she has recurring depression and really doesn't care one way or the other about much in life, including me, how the rent gets paid, how her twice weekly therapy bills get paid, etc. I am the donkey pulling the cart.

After the first three years of illness, I became a patient of Paul Cheney. His bicycle ergometry tests at the time showed I had a worse case of CFIDS than the average patient in his practice, and almost all of his other patients at the time were fully disabled. He has been surprised that I have managed to keep working this whole time, although he has recommended that I have a disability assessment a number of times. In any case, Cheney's protocol really helped my condition to stabilize, so that by 2005 I was having less trouble continuing to work. The constant suffering and anxiety about severe relapses, the emergence of new symptoms, and the severity of the usual symptoms of severe fatigue, pain, insomnia, and cognitive problems lessened a bit. I compensated for poor memory and flares of brain fog by using my "healthier" periods to develop complex models that I designed to essentially update automatically. (I am an economist/statistician by training.) During bad days/weeks, I could then use these models to "skate" because of the built-in automation of the models. It also helps that nobody I work with has skills that are similar to mine. In fact, most of them are not analytical in the slightest, which makes me look good in comparison.

But work has taken all of my energy and left almost nothing else. I do not have any friends -- most fell by the wayside after I first became sick and I don't have any energy to maintain friendships now. My marriage is in tatters -- my wife and I basically avoid each other and I resent that she refuses to work, to share the burden of supporting ourselves and our daughter. We have avoided a divorce because we believe it would be too traumatic for my daughter. One of my brothers is sympathetic about my illness. My parents don't want to know about my health or my struggles, and an older brother is fully convinced that CFIDS is psychosomatic. When I see him, he loves to tell me about his P90X workout routine, his long-distance running regimen, his ski trips. (He is my financial adviser. If I had a spine, I would fire him.)

Work has become progressively more difficult in recent years. I have found that memory problems have become far more severe and my thought processes have slowed as I have aged with this disease. I have to make "to do" lists for myself at work. If I do not keep this list in front of me, I cannot remember what I have already done, what I have to do next, how to prioritize, etc. In meetings, I often have what seems to be a coherent, cogent thought, but when I start to speak I forget mid-sentence what I was trying to say and try desperately to find the trail of my original thought, sometimes only after a long awkward pause. As a result, my anxiety level about being "found out" as someone with severe cognitive impairment continues to climb.

I have to fly to Europe for a dreaded week-long business trip tomorrow, the first one since late 2012 when my health was a bit better, and this trip will involve both meetings and socializing...I have an enormous inferiority complex because, while everyone else talks about their hobbies -- skiing, bicycling, running, cooking, wine collecting, etc., their exotic vacation plans, their seemingly enjoyable lives, I have absolutely nothing to say because I have absolutely no energy to do anything besides work. In my free time, I try to take naps, watch TV (although I have trouble remembering the plot from episode to episode) and ingest a vast quantity of supplements. My cognitive problems also snowball into full-blown dementia when I have jet lag, so that is another source of fear for this trip.

I suspect that working non-stop while suffering from this illness will end badly for me. Although CFIDS is not a "respectable/real" illness to the general public, doctors, or insurance companies, I certainly have developed plenty of "downstream" objectively measurable health problems in 17 years of being sick (impaired kidney function, chronic sinusitis, vocal cord paralysis, uncontrolled GERD, recurring bronchitis, severe muscle cramps...all documented by medical tests ordered by doctors who still look at me like I am speaking Swahili when I tell them I have CFS.)

I am not sure what drives me anymore. To a large extent, I think CFIDS has destroyed my self respect. I feel it has twisted me over time into a defeated, worthless person who is not deserving of happiness or joy. So I keep working, because I deserve the suffering. And why not? There will be nothing left of my identity and I will be of no value to anyone else when I cannot work anymore.

Oh well, I apologize for this diary-like post. CFIDS is a catastrophic illness, whether you are able to work through it or whether it forces you to stop working or going to school. I suspect that at some point in the future, someone will have figured out that we really were objectively suffering from a severe disease and that we were deserving of scientific research, fair treatment, accommodation, and sympathy. That time cannot come soon enough.

This is a brilliant, highly relatable post (for me, anyway). I wish I'd seen it when you first posted.

I wish you the best of luck, and I hope 2016 is a breakthrough year for all of us.
 
Messages
2,087
This is a brilliant, highly relatable post (for me, anyway). I wish I'd seen it when you first posted.

I wish you the best of luck, and I hope 2016 is a breakthrough year for all of us.

While difficult to read and my heart goes out to you, @minimus, @leokitten and everybody working, this post also gives me some hope.
I need to keep working to pay mortgage and have some form of life. My biggest worry is having to give up work because I can't bear to think what would happen then. So knowing that people have managed to work a long time with this disease at least gives me hope although I do know that everybody is different.
 

markielock

Senior Member
Messages
319
Thank you to everyone posting on this thread. Although it's not good that we are all going through such difficult times, it's good to know there are others to relate with.

I'm 25 (I developed the symptoms in 2010) and have already been made redundant from my first job in 2014. I had to make a couple of attempts at finishing University before I found a good balance with managing my symptoms, which allowed me finish my degree. I followed the 'natural' path after getting a degree and found myself in a job. I thought that I could bring my paced, balanced routine with me but I had never worked a proper 9-5 commuting job before and didn't know any better. After a horrendous year of anxiety and compounding and worsening symptoms, which I don't remember most of because it felt like hazy dream, I was back to where I was in 2010: bed-ridden and in pain; I could only muster a 5 minute walk to the nearest convenience shop for food and back again etc...I was made redundant on the grounds of ill health.

I have been recovering all year, my health has hit a reasonably good 'base line', I have found Myself again and can explore my passions within reason, i.e. I can remain flexible and deal with the symptoms as and when they flare up. However, I lost a fight with the benefits system, whom literally denied that I had a condition despite a diagnosis from a team of specialists from hospital and a long documented medical history. As a result, I've been forced to look for employment while on Universal Credit because I simply have student loans to pay. I'd like to work: I couldn't look after myself very well so I had to move back to my parents home in remote Scotland where there is no mobile signal, no public transport, sketchy Internet and I can't drive myself anywhere (the nearest small city is 45 minutes by car). It's personally not a very nourishing existence here so it would be liberating to pay my way but I am limited to part time roles because that's all I feel I have a shot at succeeding in. I have no idea if 20hr weeks are the answer or will let me have balance and I have no choice but to move out of the area (away from my support network) due to the remote location. These are my only options right now so I just have to try and keep on fighting. I guess there's trying to work freelance online, or starting another type of Internet-based business but it is not an immediate answer to pay off loans.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I work part time (~30 hours a week) and in addition have about 3.5 months of vacation a year.I'm very lucky. I was in really bad shape (too weak to pick things off the floor or to bend over the sink to do dishes) but being consistent with the meds/exercise below has really helped rid myself the any decline

Here's what I have found to be of great help:

marijuana: .05-.1g a day. It works great for brain fog. It knocks me out for maybe an hour but then motivates me to do exercise (usually strengthening, lots of lying down between exercises) and hobbies. Without it most evenings I would just lay on the couch with bad brain fog doing nothing. I take this everyday

ldn: great for brain fog as well and boosts sex drive (for a few weeks anyways)but tolerance seems to be an issue

ritalin - 10mg at work if my brain isn't quite working right. I take 20mg before doing cardio on an exercise bike. Works pretty good. I can usually get my HR up to 130-140bpm for 30min or so with no negative effects

kratom + phenibut - great for dates. Women usually get that there is something wrong with my brain (memory sucks and poor at recalling words) but because these drugs allow me to be myself and be outgoing and fun they don't care, they just latch on to the sex appeal :D

I also found out that getting rid of negative influences like my family, has really helped too. Mental stress really I think is a big contributor to making me crash and the related confusion
 
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Messages
13
Location
Somerset
I've been meaning to write this post for a while, I don't really see any posts on PR about people who have ME/CFS and are still working full time. I wanted to share my life experience and hear about yours. I think we struggle with different problems that others and I want to talk about them.

I have ME/CFS for over 2 years now and have been fortunate enough that I can still work full time. The first 1.5 years I had many times where I was so sick that I thought I was going to lose my job, but because I started aggressive treatment early over time it has helped to stabilize my disease.

I still spend all of my time outside of work resting and have almost no social life outside of work. Before I got ME/CFS I had a big social life with lots of friends and activities but that is now a distant memory. I also still crash severely from time to time because it's very difficult with ME/CFS to have a full time job and keep within my energy/exertion envelope.

Please tell me how your life is, how you manage, how your ME/CFS has been, etc. and ask me any questions you might have...
Hi,

I manage to work full time but it wipes me out completely! There are days where I literally drag myself into work. Work/life balance is completely disproportionate... I crash when I get home from work and spend all weekend recovering. This puts a huge strain on my relationship with my family. My social life is non-existent!

I am terrified that I will end up losing my job due to my illness. I have used half of my holiday allowance on sick days to avoid getting a reputation as "sick note". I keep going in order to support my family financially but they are missing out on my lack of physical and emotional support. I am also terrified of losing my family!!!

I'm sick and tired of people telling me to cheer up and asking what I have to look miserable about!!! My professionalism wanes at times due to pain, brain fog and the constant whirlwind of this awful disease!!!

I have spent my life pushing people away because I do not want them to see me when I crash... It's not a pretty sight!!! People say they just want to help... That's great but I haven't yet worked out how they can....

I haven't drank alcohol for 3 years but I wake up most mornings feeling hungover like I drank 10 pints of beer the night before.

Every day is full of peaks and troughs.... Well, the peak is usually half way back up a trough before I crash again!!!

Whinge over! Life is tough, but I hold onto the day that the clouds clear for good and the sun shines bright!!!

Keep smiling everyone!

Xx