Help me plan my life? How has your ME changed?

[alexa]

I have been sick for a little over two years and i am slowly understanding that my life will never be the same,
however, i get such different information on what i should expect, some say that it will get worse over the years, some say it comes and goes and some get slowly better,

I am having trouble wiuth my hope and i would really like to know how your illness has progressed, did it get better with time, worse, the same? i would love to have a poll so we can map this out,

i have gotten gradualy worse during these 2 years ( with an improvement after one year when i started with LDN, but this has plateued now) and i don't know if i should continue my plans ( or at least my plan B) and hope or just go to plan C, simply survive.
love

 

[Wonko]

I've got gradually worse over the years, I've had odd periods of improvement but on the whole i've got worse. However the longer it goes on the better my coping skills have got, which means that, on occasion, I can achieve more, with less energy and ability, than I could a decade ago, with less payback.

Life is certainly more comfortable than it was a decade ago even though I am more limited both physically and mentally. Acceptance is the key, this doesnt mean you stop fighting and give up, it means you re-define things, pick your battles and use what resources you have for what is truely important to you.

 

[maddietod]

I know this doesn't help, but the truth is that we're all different. I had a very gradual onset, my worst period, unsurprisingly, was during my divorce, and since then I wobble up and down. I've found that my symptoms are hugely affected by my diet, and I've recently had some testing done that explains what and why. So suddenly I have renewed hope, and I've gotten a bit better..........

You never know when you'll find a key. There are times when I don't feel hopeful, but I keep searching for things that might help anyway. Meanwhile, I try to stay very aware of what I need to do to take care of myself. I work very hard to prevent backsliding - I figure it's easier to prevent than to fix.

I think you should use up all of the letters of the alphabet, with Z being 'simply survive.'

Madie

 

[Graham]

Hi Alexa

Wonko and Madietodd have hit the nail on the head when they talk about rethinking the way you value life. That lies at the heart of improving. The statistics on recovery aren't worth looking at - nobody really has a clue (and that's me as a mathematician speaking). There are so many different patterns, and so many different ways in which this illness affects us. But - it is a real physical illness, and a serious one - don't let anyone ever let you doubt that. There is a bit of psychology to it, but not the way that it is often portrayed. The psychology is to make sure you do something you enjoy, that you don't waste time on things and people who drag you back, and that you don't bottle things up, but share with others (like us who have been there).

My son has had it since he was 8 (in 1989): I have had it since I was 49 (in 1999). Both of us have improved to the extent that we can go out and walk for perhaps an hour, we can spend time doing thinking stuff on the computer, and although we have good and bad patches, we don't often hit really bad patches anymore because we have at last got to grips with boom and bust.

There are some good local support groups around (and some frustrating ones), and there are several good small chatty sites if you find this one a bit too big. By all means send me a message if you want me to tell you more about that.

I'm in Sussex, in the UK, if that's of any use. And I apologise for getting all preachy - but it frustrates me the amount of rubbish that goes through the media and through "friends" about this illness, and there are so many things I wish I had known in the early days, especially the importance of breaking the boom and bust cycle, and getting rid of as much hassle and stress as you can, so your body has time and energy to recover. A group of us did produce a silly little "things you may like to know if you are new to ME" site, which may be too basic for you now, but we all felt frustrated that it took us so long to find out what it was all about.

The best part about the illness - there are lots and lots of really nice people out there with ME, friendly and supportive. They have helped my son and me so much.

 

[alexa]

thank you for your kind words. I feel like i am in a dilemma, i really have re evaluated life since i got this illness and feel like i could have a ok life with this disease. But i can't, I live in sweden, and we are so behind in ME, there is no way that i can get disability or any economic help from the goverment. So i have to find some sort of work that can support me and not kill me. I have no clue what this would be, right now i am studying to be a funeral home director and i love it, the classes are fun on 8/10 days i can barey manage, when i have gotten up, taken a shower, had breakfeast and biked there ( 6 min) i am exhausted. So if i am not going to improve i need to ditch all my previous plans and try to find work that i can do at home. I am 27 years old, is this how its going to be...

on another note Graham, how sick is your son? would you advise ME sufferers from not having kids? ( i want children....)

 

[Esther12]

I'm in a similar situation, but have been ill about 10 years, and am only just starting to realise that I'm unlikely to return to full health and be able to pursue the sort of career I'd previously expected.

Not too happy about it, and not too sure what to do about it. To be honest, my primary desire is to hold accountable all those quacks who thought that disability in CFS was perpetuated by the belief you will stay ill, so it was acceptable to tell me I was sure to recover despite the clear evidence to the contrary. Rather doubtful that I'm going to be able to earn any money from that particular bugbear though.

 

[Graham]

Hi Alexa

Sorry to hear of your situation. I'm afraid I'm a lucky one in many ways - my ME is moderate, and I went down with it after I had been teaching for so long that I could take early retirement. We all live together, so financially it's not so bad, and I was healthy while Ian was young.

It's strange, but in the UK we think of Sweden as being so far ahead of us in terms of fairness and equality. But I guess everywhere has its strengths and weaknesses.

I know a number of people with ME have gone down the massage/reflexology lines to earn a small living - something they can pace at their own rates. My son could go into graphics, but he just couldn't manage the deadlines (he did my avatar - cruel lad!). It is so hard. I can do a bit of private tuition, but 3 hours a week is pretty much my limit (that means 5 or 6 hours a week of work at something I know inside out).

As for children, well there was a pretty controversial thread on here a while back about it with all sorts of strong views. But I reckon it's pretty much the same as anybody's decision to have kids - assess the facts, see if others cope, and decide for yourself. Unfortunately there aren't many facts around about ME that you can rely upon, and even fewer about how children fit in - even whether they can inherit the illness. There is a weak statistical link (but then, in the UK there is a statistical link between the number of consonants in a months' name and the average amount of rainfall that month).

My son and his girlfriend have ME and are 3 years older than you, so perhaps they will have to make that decision as well. Children put a lot of pressure on a relationship, healthy or not, so I think a crucial part of the decision is how much support you can get from people around you. But they also bring so much into your life ... There is an online site for mums and ME, but I'm not sure if it is for mums with ME, or with children with ME.

Have an e-hug!

 

[Sparrow]

For me, I recovered some from my initial bout in 1997, but the plateau I landed at was pretty much where it stayed from there for most of the years since. It seemed to get a bit worse every year, but I think that is mostly because I didn't know what was wrong with me, and consequently kept pushing myself to lead a "normal" life. The last year or two it started to get progressively worse for me. Earlier this year I crashed out majorly and am now bed bound. I wish I had known sooner in the journey what was wrong with me. I think that information could have helped a lot in preventing things from getting so bad.

I've found myself struggling with a lot of the same things you are. I keep looking at the plans I had for my life, then making a plan B, then scrapping plan B because I realize even that is probably unrealistic. I also have no kids yet (I'm almost 34), and feel personally like the timing of things getting so bad has probably made that decision for me. But I am coming to peace with it.

I think for me, I am trying to plan for the worst and hope for the best. It seems like some people do recover from this...but others really don't. And the strain of pushing to do more than your body can easily handle can really push us over the edge into a much worse state (that's what happened to me, struggling for so long to keep the job that was more than I could actually do, because I just couldn't come to terms with letting it go). I still have hope that someday I will be able to return to my job. But I'm also trying to plan flexible things I could do to help contribute if I got better but not fully well.

I guess I would suggest realistically that you plan to have the same energy level as you do now. Which I realize is a heartbreaking thing to come to terms with, and may involve a lot of mourning over the life that could have been. But there is a new life there, just a different one. And if you do manage to recover more fully, nothing can stop you from finding a way to go back to the job that you love.

Many hugs to you.

 

[November Girl]

A job you can do from home is a huge benefit. One PWME I knew learned medical transcription. Her clients or agency sent her tapes which she transcribed on her computer. It let her work at her own rate, and she didn't need to put the effort into grooming that most jobs require. The grooming issue can be a big one when you go through a patch of being worse than normal.

I would not consider a job that involved standing, as nearly all of us develop some form of POTS or OI.

There are no guarantees with this disease, but you can tilt the odds in your favor by taking care of yourself. The most important thing I'm aware of is not pushing yourself to exhaustion. Beyond feeling awful at the time, I think it sets you up for a decline in your average day to day abilities.
--------
OH, re the disability. When my doctor and I had no clue what was wrong with me, we did know that I had an irregular holter monitor (24 hour heart monitor) and very unpleasant GI symptoms. I had no trouble getting short-term disability on that basis. Even with Social Security disability, some people have gone in with enough irregular test results that it was quite obvious something serious was wrong, the judge/doctor were convinced they were unable to work. I've no idea if any of this will help, just want to throw it out there.

 

[Nielk]

Life is like a bowl of cherries - you never know what you're going to get. You can tell my thinking by just looking at my signature. No one here or anywhere can predict the future. Especially with this disease. We are so different. Some get better with time , some get worse. We each react differently to the same treatments. It is such an individual thing. I learned with this disease to just take it one day at a time. I can never plan ahead because I fluctuate a lot and sometimes it's from day to day. It is really disconcerting because it is giving up a level of control but, that is the reality for us right now. Hopefully, in the future, some real treatment will be available and we will be in a different position.
I wish you the best of luck,
Nielk

 

[alex3619]

Hi alexa, from talking to a lot of people for a lot of years, things can improve or get worse or stay the same. Once you identify things that make you worse and manage them, you can probably stabilize or better. Once you can find strategies that improve something, like diet or stress, then you might improve.

Generally I think that we tend to get worse but learn to manage better over time, so that overall it is an improvement - provided our circumstances allow us to manage the illness well. Some who improved a lot and went back to a normal life then crashed very badly and are much sicker. If you improve a lot, do be kind to yourself so you wont crash.

Bye
Alex

 

[heapsreal]

Yes once we have stabilized i think its easier to take one day at at time, if u work try not to change employment unless its a cause of greater stress or maybe cut back, i seem to bounce between full time and part time depending on how i feel and financial situation at the time. Sometimes i think of doing something else work wise but retraining and finding new work is more stressful and now look at work as a source of income, not my enjoyment. I look for simple things in life to enjoy and there normally free. Even things i propably wouldnt have noticed or realised i enjoyed like watching TV with my kids and laughing, moments like these i tend to recognise now. Im sure there are others things people now recognise, music, old tv shows, catching up with relatives. looking at things from a different angle i guess, there alot we have taken for granted but recognising them can bring contentment.

cheers!!!

 

[taniaaust1]

No one can tell you if you will stay the same, get worst (which could happen esp if you are doing too much still) or get better. I think this early in the piece you still have a fair chance of having a remission. Take care if you do as many of us think we are safe when that occurs and end up getting sick again due to pushing ourselves.

In the 14 years Ive had ME... its changed so much. I went from on and off case with flu like symptoms, to being long term bedbound unable to care for myself, to getting a full remission, to crashing back into ME but when it came back it came back very neurological (like Parkinsons) to it changing to where I are now where POTS is my worst disabliing symptom.
What symptoms you have right now.. may be not the dominant symptoms you have in the future with this illness. Its completely unpredictable what your outcome will be.

Plan for the worst but stay positive as you just dont know.

There are some good threads been done at this site in the past on our illness and on if people think having children are a good idea. I just say whatever decision you make.. be realisitc and be prepared for the worst time if you did have kids and the worst happened. (You'd need a very supportive partner who would be prepared to take over the care of the children if you couldnt yourself).

I have two children when I first got ME and was a single mother. My 9-10year old daughter had to became my carer as I ended up bedbound. She not only had to take care of herself but also her younger sister and me.. and our whole house. My youngest child who was about 6-7 years old, struggled with me being unable to care for her and it destroyed our relationship... to this day as an adult she dont speak to me and believes I didnt love her as I didnt take care of her. She ended up with depression which she still has today... the illness not just destroyed me but has left her with life long emotional isssues too.

Be aware that one ME/CFS specialist has said that 25% of her ME patients have a child with ME themselves (this illness does seen to have a genetic component... I have 3 members of family affected).

My only advice would be seeing you are only in mid 20s would be to hold off of having children for the time being... you still have plenty of time to do so in future and right now.. who knows.. maybe they will know a lot more about our illness in 5 years time.. if its a hidden virus responsible or whatever. Right now you do have time on your hands to just focus on how you are right now and possibly still in future be able to live your dreams.

With time, you will also come to terms with the illness more and as others said, become better coping with it. The life you live now... new things are found to replace. Im nowdays quite disabled but at peace with it. One learns to enjoy the simple things in life more and more.

I wonder if you could catch a ride to work instead of bike riding and being exhausted when you get there. Maybe you could arrange with a neighbour to take you or something. It sounds as if you need to find ways to cut back a bit on what you are doing.

best luck

 

[Nielk]

from Alex3619

Hi alexa, from talking to a lot of people for a lot of years, things can improve or get worse or stay the same.

No wonder Alex3613 that you have Einstein as your Avitar picture. I had a good laugh! Thank you.
It is so true though. This is one of many frustrating components of this disease.

 

[heapsreal]

from Alex3619


No wonder Alex3613 that you have Einstein as your Avitar picture. I had a good laugh! Thank you.
It is so true though. This is one of many frustrating components of this disease.

Next time i see Alex i will get him to poke his tongue out and compare it to his avatar, i think theres a similarity,lol

 

[Nielk]

Next time i see Alex i will get him to poke his tongue out and compare it to his avatar, i think theres a similarity,lol

With a brain like that, who cares how you look.

 

[heapsreal]

With a brain like that, who cares how you look.

I was refering to his brain, lol. He does have a good brain on his shoulders which was probably alot better in his day.

 

[m1she11e]

I would absolutely say "dont go by any of our stories."

With that said...I was able to work full time and raise two daughters (not giving 100 percent to either job...) until only 3 or 4 years ago. Neither of my girls have health problems. (I dont want to hear any "so fars...") This illness came on suddenly when I was 15, and I am 44 now. I always had hope, I never treated myself as if I had CFS/ME. Being into alternative medicine for most of my life, an illness didnt need a name. I focused on diet and taking care of my body as a whole. Now that I have spent some time on these forums, I realize that I have done much better than many for many, many years. I never realized how sick some people were and I too experienced about 2 years of rock bottom myself about a year ago.

I do recall very early on finding the Prohealth message boards because I was ordering supplements. I went on a chat and was hoping to learn of "positive" treatments that I had not yet discovered. Instead, I found a group (mainly women) who obviously knew each other very well. When I asked about treatments and what they were doing etc, they basically all agreed that I had better just get used to being sick as there was nothing to be done. They almost got mad that I still intended on being well one day. A lot has changed since then but it was a very sobering experience. It took the "hope wind" right out of my sails for quite a while.

We are all so different. Im not sure why I did as well as I did for so long and then got so sick. I believe if I had truly realized the magnitude of the illness and how sick so many were long ago, the course of my illness would have been far worse. Without hope, there is only desperation and depression and that is the worst possible place to be in.

I believe we need to have plans A through C. (maybe more...) I try to live each day as fully as possible and not in a state of "PEM" fear. I did experience housebound and now I work part time and get out almost daily. I never thought I would come out of it but I did. Im working on disability because I dont know what the future holds but I think of it as an escape plan. I too love what I do and even on days that I barely push through (and fall into a heap when I get home), I feel satisfied that I made it. I personally believe that giving up on work, for me, is one of the worst things I could do. I also realize there is a time I may need to. (Escape/disability plan...)

I check these boards to see about latest treatments, how others that seem to have "my kind of CFS" are doing on different protocols, etc. I try very hard not to get pulled into despair. I know that despair is worse than this illness itself. I think about Plan C every night before bed. In Plan C I am athletic and healthy again and loving life. We have to be smart and realistic but I believe that not letting go of "Plan C" is vital.

As much as we dont know why some end up bed bound and stay there, we dont know why some actually recover. We cant forget that some DO RECOVER.
I believe you have to write you own story with this illness!!

 

[Tristen]

I have been sick for a little over two years and i am slowly understanding that my life will never be the same,
however, i get such different information on what i should expect, some say that it will get worse over the years, some say it comes and goes and some get slowly better,

I am having trouble wiuth my hope and i would really like to know how your illness has progressed, did it get better with time, worse, the same? i would love to have a poll so we can map this out,

i have gotten gradualy worse during these 2 years ( with an improvement after one year when i started with LDN, but this has plateued now) and i don't know if i should continue my plans ( or at least my plan B) and hope or just go to plan C, simply survive.
love

Very wise questions. Not only for making the best plans, but also because it will help you manage this disease in the best way possible allowing for maximal recovery potential. I believe during those early years that we have a lot of control over how this disease will unfold. This option loses it's effectiveness as the years go on.

I've been progressive since onset years ago, but I do believe that could have been prevented had I known then what I know today. Nobody knew a thing about pacing back then.

Your still early in this disease which means you have the highest potential for recovery to whatever extent that is possible, as long as you do everything you can to encourage healing. As you know, number one is strict pacing. Number 2 is to get in with the right doc asap. Don't waste time with those who don't know this disease. You have to act now while your new. Get the exclusionary diagnosis' ruled out right away. Get on it with treating the me/cfs if that's what you have. Get a good diet going, which I have found to be more helpful than decades and mountains of recommended supplements.

Take care of yourself in all ways possible. Do all you can now in these early years to arrest this disease, and at least to minimize it's progression. You are asking one of the wisest questions I have seen in some time. We are all willing to help.

 

[valentinelynx]

Let's see. I got sick in 1993 but ignored it for 2 years, during which I started med school. Crashed hard in 1996 thanks to a true nightmare of a resident stressing me out on top of the schedule and performance pressure in clinical rotations, became nearly bedbound, got a scooter, etc and did med school 2 months on 2 months off for the next 4 years. "Recovered" to 85% in 1997 (about 18 months after the crash) and thought that was the way it would be for life: did internship (with some 110 hours weeks) and residency straight through (very painful, spent all of the minimal off time in bed), after finishing residency worked part time, which let me recover between shifts. Decided to do pain fellowship in 2006, which was harder than residency despite easier hours, so my health was slipping. After that, took 2 years to find a position that suited me, and when I tried to do it (full time), collapsed into a quivering mess. Now I'm not as bad as I was at my worst back in 1996, but darn close, and working only rarely. This story spans 18 years. I really want my 85% back! Wish I knew what, if anything, was the "magic bullet"!