Resignation

[digital dog]

Has anyone got to the point where you can accept your condition and limitations? Where you are no longer searching for the next doctor, cure or treatment?

I think I am nearly at the point (after decades of trying things that only make me worse) where I will have to accept my lot in life. It is not so much that I have lost hope, it is more that I am not going to actively look for it.

It is quite a change for me as I have spent my life searching for something or someone that alleviates my suffering.

At the moment I feel empowered by this realisation (and I feel dreadfully sick this weekend) but the truth of the matter is I will probably continue to have a life that is governed by sickness, grief, loss, frustration and sadness and one that has very little pleasure but a great deal of pain.

It has taken me 18 years of constant researching and striving for the holy grail of health. I think it is time for me to accept the reality of my life.

Does anyone else feel the same and what made you come to this conclusion?

 

[Invisible Woman]

Yes. I came to this conclusion a few years back. I realized that I was actually causing myself more harm dragging myself from one "cure" to the next. I also found that having false hope raised and dashed repeatedly wasn't doing my mental health any favours either.

So.... for now I wait. I only follow advice from very highly trusted people and keep my fingers crossed that someday, before I am too old to get the benefit from it, some treatment will be discovered/developed. I am starting to feel that time is running out though. Rituximab looks promising but there's a long way to go with that and I might not be a responder anyway.

If I can leave home for an hour or so I would rather go somewhere quiet with my husband and have a decaff tea or coffee and a chat and a laugh. Far better for my health and wallet than searching for "cures". If I am well enough to leave my bed but not go out then I cuddle and play gently with my dog. She is the best therapist ever and worth her weight in Prozac. All 40kg of her!

 

[snowathlete]

I am very hopeful of Rituximab and other efforts to figure the disease out but having tried a few things including seeing KDM and only making matters worse I have concluded there is almost no chance of any current treatment making me any better. Not ready to write my life off yet but I am in a waiting room at the moment and will likely be here, suffering, for years yet. That's my reality. I'm doing the little I can to speed progress along, that's a better use of my limited energy, I think.

 

[mermaid]

Yes, I am almost at that point myself after 5 years of trying various approaches. I have run out of ideas and reluctant to throw any more money at it.

However in my case I do feel that I have had some improvement so that at least is worth holding onto. I visit a medical herbalist regularly and take her mixes, and in the year since doing so my immune system has shown definite signs of modest improvement (along with some other things I did previously to support it). Viruses have given me the worst setbacks and relapses in the past so if I can help to avoid them it will be worth it.

 

[Gingergrrl]

It's a great question and I am not quite there yet and still trying to figure out what illness I truly have in the hopes of finding something to improve my quality of life. I do not believe there is a holy grail that will cure me but I still feel there are options that I have not tried and maybe I can find small things that each give me a 5% improvement (actually that would be amazing at this point.)

I will be trying to arrange appts with a pulmonologist and rheumatologist (both something I have not ever tried) and then in Feb I have a consult with Dr. Chia to investigate the enterovirus angle and then the following week at Stanford with a Neuro who specializes in autonomic issues. If none of these four leads go anywhere, then I will accept my fate b/c I will truly be out of ideas to pursue.

But in the meantime, I am also trying to enjoy the smaller moments with my family and dog as someone else said in this thread and trying not to view it as an either/or kind of thing.

 

[SB_1108]

I go in phases... right now I'm trying something new again but like you, every time I try something new, I typically feel worse and tell myself "never again"

Takes me a bit to forget that I said "never again" and even more time dwelling on the fact that I want to be well again.

 

[Rick Sanchez]

I feel you OP.

I have personally stopped chasing the elusive dragon of a CFS cure for now.

I have accepted that fact that I will most likely only get better once the world of medicine actually finds out what is wrong with us.

The only thing that scares me is that it might be something other than CFS, so I do go to the doctors to get everything checked once in a while (free healthcare FTW), but sadly after having tested me for ''literally everything'', they always reach the conclusion that I must be depressed (free healthcare FTL). Sadly the psychobabble is extremely strong in Denmark.

 

[geraldt52]

I have accepted that fact that I will most likely only get better once the world of medicine actually finds out what is wrong with us.

+1. This is not the same thing as "giving up", this is realizing that donating whatever I can to research has made me feel much better than 30 years of nonsense "treatments".

 

[digital dog]

I still get excited about treatments (old habits die hard) but I'm training myself to take everything with a pinch of salt.

An example of this is that the other day someone said I should try aloe vera juice drink as it has given them a lot of energy. Anytime in the last eighteen years I would have brought some and given it a go but this time I had a quick nose on the internet and talked myself down.

I do need a drug and I do need improvement but I have had so many life-changing adverse effects from things that I am too scared to try anything again. If I could tolerate medication I would be on an antidepressant as I feel that it would make things slightly more bearable psychologically (probably worse physically).

Saying that, I would like to try rituximab. That, the menopause shifting my hormones and time are my three pillars of hope.

Suicide is never far from my mind (am I allowed to say this?) but I am a mother and that it what keeps me fighting. If it wasn't for her I would find it very hard to convince myself that it is worth being here.

And just for the record, I don't blame anyone trying EVERYTHING to get better. I am just too tried to continue with having my hopes dashed and raiding my pathetic piggy bank for things that make me worse.

 

[BurnA]

I still get excited about treatments (old habits die hard) but I'm training myself to take everything with a pinch of salt.

An example of this is that the other day someone said I should try aloe vera juice drink as it has given them a lot of energy. Anytime in the last eighteen years I would have brought some and given it a go but this time I had a quick nose on the internet and talked myself down.

I do need a drug and I do need improvement but I have had so many life-changing adverse effects from things that I am too scared to try anything again. If I could tolerate medication I would be on an antidepressant as I feel that it would make things slightly more bearable psychologically (probably worse physically).

Saying that, I would like to try rituximab. That, the menopause shifting my hormones and time are my three pillars of hope.

Suicide is never far from my mind (am I allowed to say this?) but I am a mother and that it what keeps me fighting. If it wasn't for her I would find it very hard to convince myself that it is worth being here.

And just for the record, I don't blame anyone trying EVERYTHING to get better. I am just too tried to continue with having my hopes dashed and raiding my pathetic piggy bank for things that make me worse.

I am the oposite to most here in that I have never sought treatments. I am sure some things might work for a few people but ultimately the science will tell is what works or not. In fact I get angry if people suggest something that isn't science based.

I am excited for rtx and hopefully cyclophosphamide too. Regarding antivirals I am less enthusiastic but I am not saying they don't work for some.

Of course over time my experience my change and I will become more desperate for a treatment but for now my plan is to wait for rtx and cyclo results.
I am aware that even if these are positive results I may not respond so until we have a biomarker too, the picture won't be complete.

 

[Invisible Woman]

Suicide is never far from my mind (am I allowed to say this?)

It is important to express how you feel and acknowledge it. You sound as though you are in a pretty dark place. I think most people will struggle psychologically from time to time. I find it helps me to just stop and take another look at my life. Sometimes when you've spent your personal resources searching for the cure it is easy to forget that your life is TODAY. Of course there must be some planning for the future (especially when trying to pace yourself) but looking at what is important in your life right now - family, pets, that bar of chocolate in the back of the cupboard - allow yourself some time to savour and appreciate these things every day. Even just for a few minutes.

I don't know how ill you are - but is there any way you could get away from home for a couple of days? Be by the sea, in the mountains, near a forest - whatever. Sometimes just getting out from the same four walls can trigger a fresh perspective.

Hang in there.

 

[digital dog]

Thank you Invisible. I appreciate your response. I am in a dark place but all it takes is a little improvement in my health and my outlook becomes bright. It doesn't take much...just a good hour here and there to keep me focused.

My family are important and I may one day be well enough for a pet but I find it hard to savour things as they are so coloured by feeling dreadful.

Going away is out of the question because I get worse insomnia and that causes a great deal of trauma to me. I live by the sea so I do go and sit on the beach which is beautiful here.

I find beauty in so much but rarely have the health to really enjoy it. On the rare occasion that I feel functional and clear headed I appreciate life to such a degree I am usually in tears (happy tears).

I just wish it would happen more often....as we all do.

 

[ahmo]

I've been on a healing trajectory for the last 4 of the 13 years I've been unwell. The last thing for me to consider is injecting B12. Other than that, I'm accepting that this is as good as it gets: no noxious symptoms, very limited energy. Some days I'm fine with this, relaxed and accepting. Some days I have to overcome misery, feeling fed up. Feeling suicidal from time to time feels natural, not shameful. Some days I get the bear, some days the bear gets me.

 

[Marky90]

As BurnA, I*m optimistic because of rtx and cyclo. If that wouldn`t work, i will stick around for the research to progress,and other treatments.

I will never give up, because i know there is a answer. Something can stop the underlying pathology.

Resignation?

"rage
rage,
against the dying of the light"

 

[lansbergen]

Has anyone got to the point where you can accept your condition and limitations? Where you are no longer searching for the next doctor, cure or treatment?

Acceptance is the first step to healing.

 

[ScottTriGuy]

accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference. (truncated version)

 

[halcyon]

Has anyone got to the point where you can accept your condition and limitations?

No. I don't see how it's possible to accept a life lived in bed surrounded by four walls. I can't accept losing everything that makes you human. I'll never be OK with that.

Where you are no longer searching for the next doctor, cure or treatment?

I don't think this is mutually inclusive with your first question. I don't accept my condition but I have stopped searching because I have found ostensibly what is wrong with me. I had the benefit of getting sick in 2014. I have the Internet, Pubmed, and the combined knowledge of 60 years worth of research at my fingertips. I was also lucky enough to get sick in the US and have access to testing that many do not. I remind myself daily how lucky I am.

 

[Sushi]

Has anyone got to the point where you can accept your condition and limitations? Where you are no longer searching for the next doctor, cure or treatment?

I think these are two different questions. I accept my condition and limitations because that is the reality, but I don't accept that it cannot/will not change. I think there are many hopeful avenues of research and treatment that are opening up. I am watching...and cautiously trying things that have a good risk/benefit ratio and which are affordable.

 

[Keela Too]

I'm not long ill - soon will be 4 years - but I found that in order to stop pushing myself in the early stages I had to go through resignation and acceptance.

Although perhaps that was acceptance that I had become ill, rather than any form of acceptance for my long term state.

I still have a sort of naive feeling I'll wake one morning and be well again.... but so far that's not happened.

I guess I still hold out hope that there will be a treatment that works - so I haven't given up hope. And in the mean time I do my best to slow the progression of my condition.... not easy as some things are beyond my control.

Ho hum. Some days (like today) I feel more frustrated than others when I seem to be more content.... no easy answers.

 

[Gingergrrl]

No. I don't see how it's possible to accept a life lived in bed surrounded by four walls. I can't accept losing everything that makes you human. I'll never be OK with that.

@halcyon I totally agree and I will never accept this either.

I don't think this is mutually inclusive with your first question. I don't accept my condition but I have stopped searching because I have found ostensibly what is wrong with me. I had the benefit of getting sick in 2014. I have the Internet, Pubmed, and the combined knowledge of 60 years worth of research at my fingertips.

I don't think the two questions are mutually exclusive either. I am the opposite in the sense thought that I have not stopped searching b/c I am still not certain what is wrong with me. For me having the internet is both a blessing and a curse b/c I find so much stuff that contradicts each other and so many different things to investigate or ways to proceed. I am trying to make 2016 the year that I pursue every avenue that I can until I am more certain of my real diagnosis (to the extent that this is possible.)

I think these are two different questions. I accept my condition and limitations because that is the reality, but I don't accept that it cannot/will not change. I think there are many hopeful avenues of research and treatment that are opening up. I am watching...and cautiously trying things that have a good risk/benefit ratio and which are affordable.

I am also trying to be cautiously optimistic and try things with a good risk/benefit ratio. For me right now this is glutathione and very minor versions of mold binders. Not sure yet what the next step will be. But feeling that there is still something to try always gives me some level of hope.