Losing your hope and drive to get better?

[Jemima37]

Sorry if I’m repeating myself a little here but I’m wondering if anyone else went through this stage and does it pass?

I’ve had CFS around 3-4 years but it’s come and gone in severity. In the last two years it hit really hard along with debilitating anxiety and depression. I had depression in 2018 when the CFS became a lot worse, then last year the depression lifted a lot.

In the last few months I’ve lost my interest in my hobbies and kind of feel a bit flat and like my spirits tired. It’s hard to describe but I’ve always had a great passion for reading, knitting, crystals and meditation. In the last three months though I just lost my mojo for my passions. I have posted about this before so I won’t go further into that but what I’m trying to say is it’s as though I’ve lost my drive for life and recovery.

I used to love watching YouTube videos on recovery and I’d make notes and some kind of plan to get better. I used to like planning my food and anything else that may help with recovery. In the last few months though I’ve almost given up bothering to do those things and it’s as though I just don’t have the drive to do it anymore. It’s really unlike me. I score mild to moderate for depression and I know myself when my depression is bad and I don’t feel that way. I didn’t suffer depression until 2018 when the CfS returned worse than ever. But I do know how it affected me that year. I feel more flat emotionally and tired than anything. I still want my passions back and drive to get better otherwise I wouldn’t be so upset by this but I feel I can’t force myself if it’s not there. I still have depression but it’s far better than it was back then. I’ve come a long way. My GP said it was purely situational.

I do feel like my feelings are a little bit cut off so I know it’s an element of depression but it also feels as though I’m just too tired to try to get better at the moment or trying to enjoy my hobbies. This actually upsets me because it’s unlike me. I plan to read a book that day but it never happens, I’ve zero drive to do it.

Did anybody else lose their hope to get better or their drive? I’m just wondering if at times others go through this phase and if it’s quite normal? I think with it turning 2020 I’ve just felt a little deflated and it feels as though it’s just another year of nothing getting better. I spend all my time at home, I rarely get out because of the CFS so losing my hobbies and my drive to get better has been quite depressing in itself. I have a wonderful husband and 3 amazing teenage children. We laugh a lot, we have a good family home but yet I feel deflated and just exhausted emotionally. I do carry so much guilt that the last two years I’ve not been able to get out with my family to continue making memories, so my husband thinks that guilt has contributed to how exhausted and emotionally flat I am because all I feel is guilt so there’s not much room for much else that I used to enjoy or hope.

Sorry if this is similar to a past post I’ve made, I just wondered if anyone else has gone through times of losing their drive and hope?

 

[KenJT]

To be honest it kind of is what is going through my mind now. I honestly don't know what is going on with my body. Doctors blood tests come back clear but i have severe low energy levels if i don't take a wide range of vitamins etc daily (That is just to allow me to function however the brain fog and low energy is still there). The recurring thought i struggle with is am i going to be 80 and having to do this? With the issues i have i honestly think ill be gone sooner rather than later unless i find a fix for my current issues.

 

[Wolfcub]

I feel a little like you do, I might have mentioned this on your other thread. I have strangely, felt this from day one, March 27 2018, when I very suddenly became unwell (had been fine before that day!)
A group of symptoms suddenly hit me out of the blue at about 2pm while I was putting logs through the log-splitter (not terribly heavy work. The machine does most of the work!)

They were all pretty grungy (head/eye pain, heart racing, strong palpitations, vague nausea, shakiness, immense fatigue, hard to get my breath, going hot and cold (though no actual fever), bitter cold hands and feet suddenly, and an overwhelming fluey sensation of "coming down with something".)
Along with those things came a strange sense of separation from everything I liked or held most dear. I could not feel anything for anything....if you know what I mean. I suddenly couldn't find any special heartfelt connection to anything.

Since then in almost 2 years, that is something I do recurrently feel, which has been so unlike my "normal" self, and the way I always was before.

In my case I have never had depression or anxiety as a clinical condition, or any other mental illness, but of course, being human, I have had times when I felt anxious, and times when I was a bit depressed.

A T.I.A. or mild stroke was ruled out by two GP doctors and a hospital neurologist. Nothing unusual was found in my bloodwork except electrolytes a little unbalanced. All organs functioning normally, and heart got the all-clear.

But I was convinced the emotional blocking sensation was caused originally by something physical which happened suddenly. How it affected brain/ brain chemistry, etc....I don't know, and even the neurologist didn't have a clue!!
I avoided being prescribed anti-depressants. I didn't want that, for myself. I think I avoided it because I went home and decided to work it all out for myself, so never actually went back to doctors, following an appointment with a GP where she said "after 6 months, we would consider this to be ME/CFS." And I was already in the 5th-6th month at that point, with symptoms slightly improving from what they had been.


But I still get phases when I can't kind of "reach" my emotions and heartfelt things.

I do get phases also, when I can.

So....in a way I have lost my mojo too. I find it hard to get my head around the endless doctor/hospital appointments/tests (some of which are invasive) and the many approaches to treatment. I am scared of tipping a fine balance with myself by taking the wrong thing. I just do basic maintenance doses of vitamins/minerals, plus good food....pace myself.
I relapse and crash sometimes, and sometimes for quite a while I can feel fairly "normal -ish", but things are better than they were.

It's not a pleasant thing to say, but I think these low feelings are probably part of the whole ME/CFS experience, and I think it may be natural to feel some levels of depression and anxiety. It is quite devastating to our normal lifestyles. The knack is to know what is understandable when not feeling well, and what is intrinsic "depression/anxiety" which may respond to treatment?

(I made this larger print, as it seems you may be finding large text easier to read right now?)

 

[wabi-sabi]

I have been feeling like this lately as well. It's like a spiritual sort of exhaustion along with the mental and physical exhaustion. I'm not sure if I would classify it as depression, other than situational depression. My disease has been gradually getting worse and I'm terrified how much sicker I will get. That sure doesn't help my mental state!

But I really think this new level of exhaustion is the ME/CFS, and not really about depression. Just the latest in a string of symptoms. Maybe even my body's way of trying to get me to rest more.

 

[2Cor.12:19]

Hello @Jemima37. I can truly relate to everything you said and my heart sure goes out to you friend. I think most of us have (and still do sometimes) feel hopeless. I hope I can encourage you a bit.

I've had ME/CFS for 33 years and got sick when I was 36. I was bedbound most of the time for the first few years, and have been on and off since. When I first got sick I also enjoyed a happy family life with 3 kids at home. (They're all grown and we have grand-kids now ). But like you, I missed out on many of the normal things that families do together because I was too sick to even go out of the house most of the time. I often felt sad and guilty about this too. But I kept hoping for a full recovery and plugged myself into everything known about ME/CFS in the 80's--We've come a long way since then!

Although I never fully recovered, there have been years when my health greatly improved to the point of being able to travel, garden, and do things I enjoy like playing my guitar and writing. In recent years my health has down-turned again and I'm currently only able to go out a couple times a week (my husband driving) to shop and go to church. But, who knows? That could change again.

Regarding your low grade depression and feeling "flat", I experienced very "flat"and semi-depressed emotions when my estrogen levels were low, beginning in my mid-late 30's. I had a hysterectomy at age 39 and am on an Estradiol patch, without which I would definitely be experiencing flat emotions and depression again. Since you have teenage kids, I'm guessing you're at the perfect age for estrogen decline, so you might consider talking to your doctor about that possibility. Even healthy women can experience flat and depressed moods when in peri-menopause or full menopause.

Another cause for depression which I've experienced is hypothyroidism (Hashimoto's), which is common with ME/CFS. Diagnosis and proper treatment for that has also helped with my emotions and sense of well being.

Each of us has our own unique journey with this disease, but I think one thing most of us long-termers can agree on is that we all go through a time of grieving our losses. It is only natural to grieve when we've lost something so precious as our good health. But the only way we can begin to get past that grief is to accept the fact that we now have a "New Normal" and then try to find ways to enjoy life as best we can in the slow lane. Accepting our new normal doesn't mean we just roll over and die and stop hoping for a cure or treatment that will improve our situation. But it does mean that we can work on making peace with it and learn to appreciate the simple things in the life that we still have.

This might sound silly, but when I'm feeling really low, I start counting my blessings. I mean every teeny little one, like sunshine, loved ones, running water, good music, etc. Once I get going, I really can't stop! It has a way of lifting the dark cloud of despair.

Wishing you all the best. I'm glad you're here at PR.

 

[Rufous McKinney]

But I was convinced the emotional blocking sensation was caused originally by something physical which happened suddenly. How it affected brain/ brain chemistry, etc....I don't know, and even the neurologist didn't have a clue!!
I avoided being prescribed anti-depressants.

This is just so different from- depressed....

this- separation....like its so hard to explain...

Engaging- takes energy. Maybe thats all it is.

can hardly engage with anything. Or its brief, superficial..and wanders away- like a spec of lint...wafting over there...and some brief shaft of lite..hits the lint. But then its gone.

so very very Odd.

 

[Rufous McKinney]

Along with those things came a strange sense of separation from everything I liked or held most dear. I could not feel anything for anything....if you know what I mean. I suddenly couldn't find any special heartfelt connection to anything.

I very strongly experience something very similar.....

But wanted to mention I also experience another kind of intense- very very INTENSE feelings. Perhaps this has aspects of manic involved.

I see something that moves me emotionally in a positive way and its like a Tsunami.

I can also burst into tears over emotional things- in an instant (the movie, the scene).

Like I feel things SO VERY INTENSEly...at times its something I'd never give up...(and I understand thats an aspect of what can be given up on the SSRIs)....but it is very intense.

Then when I was truely upset emotionally the other day over an ego, career thing,....(career now over, hence ego is sad)...I could only allow two tears. Then the entire emotional experience had to be curtailed. It costs too much in PEM.

 

[Rufous McKinney]

If I were to return, to the earth...and do over....Sickness Behavior is truely fascinating to me. Have it, so I might as well PHD myself on that topic. So I'll study that, with disinterest because I will be healthy!

This inability to engage..this losing drive, losing interest, unsure where to put hope...its coming out of the SickNess Behavior and is I believe an intensely physiological response.

You don't start a new project- Weave yardage for cloth- in the back of the cave..when instead your sick and need to recover. Its just there- this physiological message..needed to....secure recovery and ...feel better.

so in our bodies- that takes over because- we are sick in a real way.

 

[Rufous McKinney]

Did anybody else lose their hope to get better or their drive? I’m just wondering if at times others go through this phase and if it’s quite normal? I think with it turning 2020 I’ve just felt a little deflated and it feels as though it’s just another year of nothing getting better

I think its the time of year..when things are more intense what with- what we deal with normally plus holidays plus the notion the Year is now Newish-and therefore should glow differently.

there are alot of intense energies it seems like right now at least..time to hold tight...be cautious..proceed with calm and collectedness.

For various reasons- (primarily the stomach flu) my whole system has been off for two months now. And I'm flailing at times in the Dept. of Corrections and Adjustments.

So am stopping the flailing and putting one foot forward a few milimeters. got to get back on track.

 

[Jemima37]

Hello @Jemima37. I can truly relate to everything you said and my heart sure goes out to you friend. I think most of us have (and still do sometimes) feel hopeless. I hope I can encourage you a bit.

I've had ME/CFS for 33 years and got sick when I was 36. I was bedbound most of the time for the first few years, and have been on and off since. When I first got sick I also enjoyed a happy family life with 3 kids at home. (They're all grown and we have grand-kids now ). But like you, I missed out on many of the normal things that families do together because I was too sick to even go out of the house most of the time. I often felt sad and guilty about this too. But I kept hoping for a full recovery and plugged myself into everything known about ME/CFS in the 80's--We've come a long way since then!

Although I never fully recovered, there have been years when my health greatly improved to the point of being able to travel, garden, and do things I enjoy like playing my guitar and writing. In recent years my health has down-turned again and I'm currently only able to go out a couple times a week (my husband driving) to shop and go to church. But, who knows? That could change again.

Regarding your low grade depression and feeling "flat", I experienced very "flat"and semi-depressed emotions when my estrogen levels were low, beginning in my mid-late 30's. I had a hysterectomy at age 39 and am on an Estradiol patch, without which I would definitely be experiencing flat emotions and depression again. Since you have teenage kids, I'm guessing you're at the perfect age for estrogen decline, so you might consider talking to your doctor about that possibility. Even healthy women can experience flat and depressed moods when in peri-menopause or full menopause.

Another cause for depression which I've experienced is hypothyroidism (Hashimoto's), which is common with ME/CFS. Diagnosis and proper treatment for that has also helped with my emotions and sense of well being.

Each of us has our own unique journey with this disease, but I think one thing most of us long-termers can agree on is that we all go through a time of grieving our losses. It is only natural to grieve when we've lost something so precious as our good health. But the only way we can begin to get past that grief is to accept the fact that we now have a "New Normal" and then try to find ways to enjoy life as best we can in the slow lane. Accepting our new normal doesn't mean we just roll over and die and stop hoping for a cure or treatment that will improve our situation. But it does mean that we can work on making peace with it and learn to appreciate the simple things in the life that we still have.

This might sound silly, but when I'm feeling really low, I start counting my blessings. I mean every teeny little one, like sunshine, loved ones, running water, good music, etc. Once I get going, I really can't stop! It has a way of lifting the dark cloud of despair.

Wishing you all the best. I'm glad you're here at PR.

Thank you for your reply.
I recently turned 40 so yes I’m sure that has something to do with it. I also am hypothyroid so on thyroxine but levels are ok.

I’d say it’s more likely the situation I’m in. I had CfS in 2016, better in 2017 so I could get our far more and then 2018 it all hit again with the worst anxiety I’d ever had. It’s been better over the last year but still not good. I guess it’s so disheartening after 4 years.
Thank you
Julie

 

[Jemima37]

I have been feeling like this lately as well. It's like a spiritual sort of exhaustion along with the mental and physical exhaustion. I'm not sure if I would classify it as depression, other than situational depression. My disease has been gradually getting worse and I'm terrified how much sicker I will get. That sure doesn't help my mental state!

But I really think this new level of exhaustion is the ME/CFS, and not really about depression. Just the latest in a string of symptoms. Maybe even my body's way of trying to get me to rest more.

I totally agree. It’s like a fatigue of the spirit like it’s just given up for now. I don’t feel truly depressed at all as I suffered that in 2018 so know the signs. It’s more I feel flat for life right now. Not crying, or all the other symptoms I had with depression, more totally fatigued in my spirit. I guess after 4 years that’s a normal feeling at times.

 

[Jemima37]

I feel a little like you do, I might have mentioned this on your other thread. I have strangely, felt this from day one, March 27 2018, when I very suddenly became unwell (had been fine before that day!)
A group of symptoms suddenly hit me out of the blue at about 2pm while I was putting logs through the log-splitter (not terribly heavy work. The machine does most of the work!)

They were all pretty grungy (head/eye pain, heart racing, strong palpitations, vague nausea, shakiness, immense fatigue, hard to get my breath, going hot and cold (though no actual fever), bitter cold hands and feet suddenly, and an overwhelming fluey sensation of "coming down with something".)
Along with those things came a strange sense of separation from everything I liked or held most dear. I could not feel anything for anything....if you know what I mean. I suddenly couldn't find any special heartfelt connection to anything.

Since then in almost 2 years, that is something I do recurrently feel, which has been so unlike my "normal" self, and the way I always was before.

In my case I have never had depression or anxiety as a clinical condition, or any other mental illness, but of course, being human, I have had times when I felt anxious, and times when I was a bit depressed.

A T.I.A. or mild stroke was ruled out by two GP doctors and a hospital neurologist. Nothing unusual was found in my bloodwork except electrolytes a little unbalanced. All organs functioning normally, and heart got the all-clear.

But I was convinced the emotional blocking sensation was caused originally by something physical which happened suddenly. How it affected brain/ brain chemistry, etc....I don't know, and even the neurologist didn't have a clue!!
I avoided being prescribed anti-depressants. I didn't want that, for myself. I think I avoided it because I went home and decided to work it all out for myself, so never actually went back to doctors, following an appointment with a GP where she said "after 6 months, we would consider this to be ME/CFS." And I was already in the 5th-6th month at that point, with symptoms slightly improving from what they had been.


But I still get phases when I can't kind of "reach" my emotions and heartfelt things.

I do get phases also, when I can.

So....in a way I have lost my mojo too. I find it hard to get my head around the endless doctor/hospital appointments/tests (some of which are invasive) and the many approaches to treatment. I am scared of tipping a fine balance with myself by taking the wrong thing. I just do basic maintenance doses of vitamins/minerals, plus good food....pace myself.
I relapse and crash sometimes, and sometimes for quite a while I can feel fairly "normal -ish", but things are better than they were.

It's not a pleasant thing to say, but I think these low feelings are probably part of the whole ME/CFS experience, and I think it may be natural to feel some levels of depression and anxiety. It is quite devastating to our normal lifestyles. The knack is to know what is understandable when not feeling well, and what is intrinsic "depression/anxiety" which may respond to treatment?

(I made this larger print, as it seems you may be finding large text easier to read right now?)

Thank you so much Wolfcub.

I agree, I think after. 4 years it’s quite normal to experience this fatigue of the spirit and lose hope.
As a mum I think that also causes so much guilt that, that also flares these low feelings. Guilt consumes me daily, I can’t look at photos before this illness because I cry about the things I can’t do with them now and how much of a good mum I was for them before. Very sad.

I don’t feel depressed as I know the signs as I did suffer it badly in 2018 but that flares due to a difficult out time in my life and then the CfS flares again after a better year in 2016. I know the signs in me as I got better last year. It is more a flat, fatigue for life right now. Very strange.

I’m not sure how my text got so large but thank you haha.

 

[starlily88]

I feel a little like you do, I might have mentioned this on your other thread. I have strangely, felt this from day one, March 27 2018, when I very suddenly became unwell (had been fine before that day!)
A group of symptoms suddenly hit me out of the blue at about 2pm while I was putting logs through the log-splitter (not terribly heavy work. The machine does most of the work!)

They were all pretty grungy (head/eye pain, heart racing, strong palpitations, vague nausea, shakiness, immense fatigue, hard to get my breath, going hot and cold (though no actual fever), bitter cold hands and feet suddenly, and an overwhelming fluey sensation of "coming down with something".)
Along with those things came a strange sense of separation from everything I liked or held most dear. I could not feel anything for anything....if you know what I mean. I suddenly couldn't find any special heartfelt connection to anything.

So sorry you feel like this. So you were now diagnosed with CFS/ME??
I have had this disease for years - but on March 18, 2018 I was suddenly hit by symptoms I have never had in my life, even with CFS. Felt like I couldn't get enough oxygen, heart racing, terrible fatigue (then 5 weeks of not being able to sleep at all, like on speed, freezing to death, I would go from being hot to cold - anyway I am sure you have what you have........................................
I ended up being told by my Endocrinologist a few weeks later that I had a rare form of thyroid disease - he sent me for this 2 day test, swallow a radiated pill, they take pics, etc. Plus blood work. I have de Quervain's thyroid disease. Only 1 in 300,000 people get this disease, and I was hoping after 18 months it would go away.
Oh could not swallow without pain - my whole thyroid was in awful pain.
I am sure you don't present like I did - but would feel remiss not to tell you because my symptoms came on after going outside to shovel 9 inches of snow - and staying outside for one hour - came inside - felt like I was getting the flu or bacterial cold.
Before I got this diagnosis I could laugh more readily at jokes/comedy on Netflix. Now nothing makes me laugh except my girlfriend.
Sending you light - hope you have some good days come upon you.
Starlily88

 

[2Cor.12:19]

.
As a mum I think that also causes so much guilt that, that also flares these low feelings. Guilt consumes me daily, I can’t look at photos before this illness because I cry about the things I can’t do with them now and how much of a good mum I was for them before. Very sad.
.

@Jemima, Oh Jemima, please don’t feel guilty because you’re STILL a good mom! I used to sit in the window and cry as I watched my husband drive off with our 3 kids to Christmas plays, their school concerts and sporting events. I constantly worried about the effect of my being “absent” would have on them.
But guess what? Because I was always home lying in bed I was the only one of their friends moms who was there to listen to their problems every day after school. They (and their friends) would come over after school and plop down on my bed amid stacks of laundry, and chat. Me being around was a safe haven for the wonderful teenage girl who has now been my precious daughter in law for almost 25 years!
When our son went away to college he wrote a paper on ME/CFS and dedicated it to me. (And that was before anyone had heard of it)
To this day my kids insist my illness did not have any negative bearing on my parenting.

Being a good mother has nothing to do with all the things you can do - it has everything thing to do with who you are and how much you love them.

Please do get your hormones checked. Anxiety and panic attacks go hand in hand with peri menopause (as can a need for thyroid medication adjustment).

 

[Wolfcub]

when I'm feeling really low, I start counting my blessings. I mean every teeny little one, like sunshine, loved ones, running water, good music, etc.

I really liked your post very much! Yes, this is what I also do. I have learned a greater gratitude, I think, as a result.

this- separation....like its so hard to explain...

Engaging- takes energy. Maybe thats all it is.

I think that might have a lot to do with it. I think fully engaging with brain and Heart DOES take a lot of energy. We didn't used to think of that before; it seemed automatic somehow. But when energy stores are depleted, that's different.

Also, I was always told -all my life, by my dear mother, and by doctors, that for instance Influenza, always creates a mild depression for a short time afterwards. (That is regarding normally healthy people.)
Now if flu can do that, I can imagine that long years with ME/CFS (many times developed after a viral illness) -can do much the same.

 

[lenora]

Sorry if I’m repeating myself a little here but I’m wondering if anyone else went through this stage and does it pass?

I’ve had CFS around 3-4 years but it’s come and gone in severity. In the last two years it hit really hard along with debilitating anxiety and depression. I had depression in 2018 when the CFS became a lot worse, then last year the depression lifted a lot.

In the last few months I’ve lost my interest in my hobbies and kind of feel a bit flat and like my spirits tired. It’s hard to describe but I’ve always had a great passion for reading, knitting, crystals and meditation. In the last three months though I just lost my mojo for my passions. I have posted about this before so I won’t go further into that but what I’m trying to say is it’s as though I’ve lost my drive for life and recovery.

I used to love watching YouTube videos on recovery and I’d make notes and some kind of plan to get better. I used to like planning my food and anything else that may help with recovery. In the last few months though I’ve almost given up bothering to do those things and it’s as though I just don’t have the drive to do it anymore. It’s really unlike me. I score mild to moderate for depression and I know myself when my depression is bad and I don’t feel that way. I didn’t suffer depression until 2018 when the CfS returned worse than ever. But I do know how it affected me that year. I feel more flat emotionally and tired than anything. I still want my passions back and drive to get better otherwise I wouldn’t be so upset by this but I feel I can’t force myself if it’s not there. I still have depression but it’s far better than it was back then. I’ve come a long way. My GP said it was purely situational.

I do feel like my feelings are a little bit cut off so I know it’s an element of depression but it also feels as though I’m just too tired to try to get better at the moment or trying to enjoy my hobbies. This actually upsets me because it’s unlike me. I plan to read a book that day but it never happens, I’ve zero drive to do it.

Did anybody else lose their hope to get better or their drive? I’m just wondering if at times others go through this phase and if it’s quite normal? I think with it turning 2020 I’ve just felt a little deflated and it feels as though it’s just another year of nothing getting better. I spend all my time at home, I rarely get out because of the CFS so losing my hobbies and my drive to get better has been quite depressing in itself. I have a wonderful husband and 3 amazing teenage children. We laugh a lot, we have a good family home but yet I feel deflated and just exhausted emotionally. I do carry so much guilt that the last two years I’ve not been able to get out with my family to continue making memories, so my husband thinks that guilt has contributed to how exhausted and emotionally flat I am because all I feel is guilt so there’s not much room for much else that I used to enjoy or hope.

Sorry if this is similar to a past post I’ve made, I just wondered if anyone else has gone through times of losing their drive and hope?

nn

 

[Wolfcub]

I am sure you don't present like I did - but would feel remiss not to tell you because my symptoms came on after going outside to shovel 9 inches of snow - and staying outside for one hour - came inside - felt like I was getting the flu or bacterial cold.

Thank you so much @starlily88 One of the first things my doctor looked at was Thyroid levels. I asked him to fully investigate it, as though I've never had thyroid issues, some symptoms could possibly fit. They didn't all fit though for thyroid imbalance.
I wasn't sent to an endocrinologist, as the initial investigations turned up no abnormalities, and I spoke with him about this on the phone to be really clear what they had done, and found. I was sent a pdf of the results. All normal.

I have heard of a few people whose thyroids just "flipped" like that.

I think the main thing that was worrying them at the time was whether or not I'd had some kind of stroke, but further investigations ruled that out.

But sometimes it's possible for doctors to get a bit blinkered perhaps? And start to pay attention to one main thing instead of holding in mind the bigger picture. Fortunately I like my GP. He is pretty d. intelligent. And not at all dismissive.

But thank you for that insight because it is very helpful.

 

[Wolfcub]

Being a good mother has nothing to do with all the things you can do - it has everything thing to do with who you are and how much you love them.

Beautifully said! I wondered how to say that just now....and you did it wonderfully! That is SO true!!

 

[lenora]

HI

Thank you so much Wolfcub.

I agree, I think after. 4 years it’s quite normal to experience this fatigue of the spirit and lose hope.
As a mum I think that also causes so much guilt that, that also flares these low feelings. Guilt consumes me daily, I can’t look at photos before this illness because I cry about the things I can’t do with them now and how much of a good mum I was for them before. Very sad.

I don’t feel depressed as I know the signs as I did suffer it badly in 2018 but that flares due to a difficult out time in my life and then the CfS flares again after a better year in 2016. I know the signs in me as I got better last year. It is more a flat, fatigue for life right now. Very strange.

I’m not sure how my text got so large but thank you haha.

 

[lenora]

HI

Hi Wolfcub....You have a tough job being Moderator on top of everything else. I'll never be able to text b/c of severe nerve damage to my hands, although I'm able to take care of myself. Thankfully!! Recovering a bit more day by day. It's hard....do look into Autoimmune Encephalitis. I'd like to see all of you avoid that, if possible.

Sitting here listening to light opera mixed in with our beloved Musicals btw countries (hubby is British), and it's our way of connecting to the real world. Like I said, I'd like to give Light Opera a chance, but our new Music Hall (probably 15-20 yrs. old now), just doesn't have good sitting and it always throws me into a Fibro Flare. Such a pain!!

I'll/we'll be putting as much into REsearch as possible. I'll stay out of political talk, make everyone's job easier. I understand as I founded a Forum about 33 yrs. ago. Well, we did it by phone @ the time, later cycling into a BB, and I'm in 3 other groups wherein I was forced out due to changing times, but that's OK, I was ready to go after doing this work for 25+ yrs.

Please get message to man suffering from low thyroid. Dr.'s can/don't have the tests available to detect out of range. He needs to go to an Endrocinologolist(?)...that's the only way to get a proper reading. Yes, I believe the way he contracted this, but I wholly believe it's caused by a virus. Thus, the reason for continued Research even if we have to pay for it ourselves. I also believe the govt. has kept this a secret for a long time. It's scarier than AIDS & at least I had the smarts to remove myself from blood giving. Others still do, and it's wrong. We need to get that word out. I'm still very weak from recent hospitalization...my 5th for the same reason. Very hard to get back to "normal." Whatever that is for us!!

Please tell others to read Osler's Web, followed by Brain on Fire (Easy read...describes my illness), and Through the Shadowlands by Julie Rehmeyer. Very good books for those able to read in depth. I'm reading Osler's Web for the second time, simulateneous with

Thank you so much @starlily88 One of the first things my doctor looked at was Thyroid levels. I asked him to fully investigate it, as though I've never had thyroid issues, some symptoms could possibly fit. They didn't all fit though for thyroid imbalance.
I wasn't sent to an endocrinologist, as the initial investigations turned up no abnormalities, and I spoke with him about this on the phone to be really clear what they had done, and found. I was sent a pdf of the results. All normal.

I have heard of a few people whose thyroids just "flipped" like that.

I think the main thing that was worrying them at the time was whether or not I'd had some kind of stroke, but further investigations ruled that out.

But sometimes it's possible for doctors to get a bit blinkered perhaps? And start to pay attention to one main thing instead of holding in mind the bigger picture. Fortunately I like my GP. He is pretty d. intelligent. And not at all dismissive.

But thank you for that insight because it is very helpful.