Losing your hope and drive to get better?

[lenora]

I'm in a very weakened state due to recent hospitalization for 5th time since May. This time it was discovered that I have Autoimmune Encephalitis and I'm on cortisone, gradually being tapered off. Hallucinations accompany this, I've been down this road before. Horrible...I had no sleep for 8 days/nights in hosp. I managed to get some last evening, actually 7 hrs., which is a lot for me.

Someone else will be in touch with you about your thyroid levels, and what can be done for help. Also, I don't rule anything out, but I firmly believe this is caused by a virus, the govt. knows it, and helper will give you a short list of impt. books to read. I'm very exhausted & still recovering, which may take a very long time. Please pray for me, if you do such things. I was Agnostic for probably 10 yrs., but at this age feel a need for a Temple home. I've decided to b/c Jewish, who knows if this will work, I'll give it a good try, or what I'll end up being. I feel that Judaism is a good fit for me.

have always had a mix of friends. I miss the really young ones and their viewpoints. Sure, they look different than us, but there is so much to learn from them. I've promised that I won't bring up politics , but the onus is on us to learn about others & their life stories. We can then understand & accept them as people, mere people who also inhabit this earth. This place we call home...our world. I'm a people person & people like me and open up to me. Another of my strengths. Take good care of yourself. I improved over time, thanks to diligent husband who retired at age 65, good Dr.'s, food, etc. You may do it too, always have hope. You're stronger than you think; your family is also...learning is all. Yours, Lenora.

 

[lenora]

Get younger Dr.'s, their knowledge is incredible & they still read Research. My Dr.'s are old & retiriring even though we met in the prime of life when younger. Things change for everyone. That's all I can say. You'll grow stronger, acceptance and helping fellow man helps immensely. Makes your feel worthwhile & you realize you truly are different than others unless they stay informed via books. Good luck!

 

[lenora]

I hope you're doing better today. A restful night always helps (which mine most certainly wasn't). So, I know what that can mean.

Tell me about yourself and your family (even if it includes plenty of animals). I'm interested & you'll have to shed the shell of who you were and embrace a new "you." You'll find that it becomes easier with time. I've remade myself for jobs alone over 6 times until I was stricken with other, serious illnesses at age 40. We learn,......and we keep learning. Stay encouraged. Yours, Lenora.

 

[lenora]

Hi Starlily....I'm glad they ruled Thyroid Issues out, thank goodness. May I suggest that you learn to start accepting that you have a virus and it will continue to be thus until a Researcher hits pay dirt. Every spare penny (it doesn't matter how big or small it is) can be used for keeping them in their jobs and doing their work. There is only so much Research money around.

Make yourself over....I did it 6 times for jobs alone. I began as a nurse of 4 yrs., and I'm glad I got out of the profession. I went on to learn, learn, learn many professions. Yes, it's a waste to put so many eggs in one basket, but we do best if we keep changing. As for your illness, I don't know your life's circumstances, whether you're married (and this makes me want to keep helping the younger ones...I know there are only so many "windows" in life) but I'll help you adjust to your new reality. You'll find satisfaction in shedding who were you were, helping others and learning to be your own person again...when you're ready. May G-d Bless you and help you on your journey. Indeed, if you even believe in a Higher Power at this point. If you like having the chaplain @ the hosp. pray over you, then you need to find a new Church or in my case, Temple Home. I'll probably cycle into something else, who knows? But I embrace change and I'd like to see you also reach this point. I need your life story in order to help you best. Please send me your correct name and how I may help. I don't want to push you if you can't/or aren't ready. However, moving forward, with acceptance is the only way to go. By the way, I spent approx. the last 15 yrs. being Agnostic, but that's no longer working. Priest abuse in the entire U.S. began in our parish. One we helped found...you can imagine how that shook our foundation. Today, I can't even bear driving past it and won't. 3 boys we knew committed suicide in spite of $l,000,000.00 wins from the Diocese. Of course we didn't matter once it b/c natl. news on the e. coast, but those boys won't be forgotten by the likes of me. Until it hits your parish you bury your head in the sand. Abuse was so bad that the main priest, Rudy Koss, was given a life sentence in solitary. We all have so much to overcome...you aren't alone. That's just one tiny bit of my story. Yours, Lenora xoxo

 

[Jemima37]

@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).

Thank you so much for your kind words. That means a lot. I adore my children, they’re my world and the guilt I carry makes me so upset every day. it’s reassuring to know that they shouldn’t be affected. Your reply made me cry. I’ve been there seeing my children go to school events with just their dad, birthday meals with their dad, shopping trips, cinema etc all the things we used to do together. The guilt and pain that causes me. My eldest is 18 this summer and the pain I’m feeling is so bad already. I fear I’m going to let him down yet he’s so accepting of it all, more than my younger 2 and he bigs me up all the time. I’m truly blessed to have such a wonderful young man by my side. They’re all so beautiful and such kind, empathetic people:

The panic attacks I suffered were in 2018 thankfully have stopped now. My anxiety has never gone back to the level that was before but it’s nothing like it was in 2018. That was a horrific year of depression and panic attacks. I now feel more like a mild depression due to the situation I’m in with the CFS and grief for the life I had. I do have anxiety but I’ve been diagnosed anxiety for many years due to trauma. The anxiety just seemed to get worse in 2018 where it led to panic attacks I’ve never suffered from before to that degree. I had a difficult time at the end of 2017 so I know that was the trigger for the panic attacks and the depression. I also caught flu at the beginning of 2018 and a couple of months after the flu I had tonsillitis and that’s when the CFS hit me really hard. Anyway I’m over the panic attacks now and although the anxiety is higher than it used to be at least I’m not having panic anymore

I’m overdue tests but I’ve posted today about that as I’m upset and needed to let it out. Another stupid morning post from me, I bet everyone sick of me here haha.

 

[lenora]

Hi Jemima.....I found that I worked my way out of my panic attacks when younger, but finally had to go on Buspar (non-addictive), but it and Ativan stopped working after many, many years. I'm now on lowest dose of Xanax, which I've been since having Shingles (4 attacks altogether) 3 one after the other. Severely misdiagnosed by an Internist who had never seen a case. My neurologist quickly identified it, but I couldn't see him due to weakness while hubby was frequently (every wk.) out of town. I hope you can qualify for the long-lasting vaccine presently available. There is a wait time b/c it's in such demand.

As far as your children go... They'll grow up to be strong, dependable people who will gain a lot from their personal journey. You need to grieve and move along...and I want you to do so. It doesn't happen overnight; is subtle, but like I said, I've remade myself so many, many times & I know you have the strength to do it also. I had 2 girls, who fell away during certain times of their life, but are the most wonderful daughters ever created. Of course my oldest is now 48 and the youngest will be turning 45 in May. So, there's more of my story. We have to get you up, moving and doing so many other things. It's true that you have a virus and it's not going to disappear until Researchers come up for a reason for it. You'll go forward, I promise you. Yours, Lenora ( A big hug)

 

[2Cor.12:19]

@Jemima37 - not to worry friend- no one’s sick of you. We’re all in this together. I’m so glad to hear how loving your son is. A reflection of you no doubt . - Hang in there and be of good cheer. You will most likely have many better days in the future.

When I was where you are at now, I never dreamed I would one day be able to walk for 12 hours at Disneyland with all my kids - but I did! ME/CFS is definitely like being on Mr.Toads Wild Ride! . You’ll likely have many ups and downs over the years.

In the meantime, your kids are learning valuable lessons about compassion and empathy that will last them a lifetime as you all go through this trial together.

 

[lenora]

Shingles left me severely damaged & in a lot more pain

Hi Wolfcub.... 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 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. It's scarier than AIDS & at least I had the smarts to remove myself from blood giving. 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

 

[lenora]

Hello All....I'm convinced you're all very sick with these illnesses. You'll cycle in and out of feeling better. For the women (that's all I can speak to), I would based on my past, get estrogen tested and make a decisions about what's best for you. I went thru early menopause at age 42 after my lst butchered surgery (in 1970's). There are now good surgeons out there who specialize or at least know of our conditions. Get younger blood, if necessary. The younger ones are properly computer literate, respect elder patients and are the ones with the knowledge today. You may have to fill them in on some things; but that's to be expected. Don't let finding the right one take you down lower. Expect that all aren't created equal and you may have to take two of three times to click. I was lucky, I clicked with mine the first time we met...a good 'ol Calif. boy from LA and we've been together ever since. He's more like an old friend now and we enjoy each other's company. He's been happily married for almost 53 yrs., the same as us. You'll find the right one, and life will b/c easier.

Take someone with you to write down answers for all appts., and always make a list of ???? beforehand. You'll be surprised at how this will help.

Make small talk with your Dr.'s....ask them how they and their families are. That way all become connected to each other & it's imperative to your recovery. I just love mine, but I'm realistic and know they'll soon be retiring. The neurologist will return to work...they're the highest among the medical hierarchy, lots of brain power. I was a nurse for 4 yrs., so I know.

I only had 3 hrs. sleep last night...back to old habits, and that's not helping this very weakened state I'm in. What can I say? I'm trying; trying hard. I'll surmount it all as usual, I'm unafraid and just feel a peace over me. Another reason for wanting to find a new Church/Temple home for myself. I'm now Jewish after many years of being Agnostic...please be happy for me; I have my reasons to think it's a perfect fit. I'm just stumbling through the dark, just like all of you. Thanks. Lenora xoxoxoxoxoxo

 

[Jemima37]

@Jemima37 - not to worry friend- no one’s sick of you. We’re all in this together. I’m so glad to hear how loving your son is. A reflection of you no doubt . - Hang in there and be of good cheer. You will most likely have many better days in the future.

When I was where you are at now, I never dreamed I would one day be able to walk for 12 hours at Disneyland with all my kids - but I did! ME/CFS is definitely like being on Mr.Toads Wild Ride! . You’ll likely have many ups and downs over the years.

In the meantime, your kids are learning valuable lessons about compassion and empathy that will last them a lifetime as you all go through this trial together.

Thank you.

Wow,that’s amazing well done. I hope I can get there. Any advice on recovery? You did amazingly well .

I posted today about what a mess I fear I am as I don’t get our, can’t do appointments etc it was hard to write if all and I shed many tears doing so. I’ve lost all hope, my inner spirit is asleep and I’ve lost my umph for life if feels like. This has never happened before. I don’t necessarily feel depressed as I had depression in 2018 and I know how awful I felt. This is more like I’ve just lost a focus or drive to get better and I’ve lost all interests in my hobbies. I just rest all day, Potter about around the house doing little jobs which makes me feel like a wife and mum but then when I sit I can’t bring myself to do my hobbies as I’m just not feeling it. It’s strange and so unlike me. I miss that part of me try ata vanishes these last 3 months. A fatigue of the spirit I think they call it

I carry so many negative thoughts about myself plus all the things I can’t do right now like in my new post today so I think all of that weighs me down and the guilt I carry too. The grief of who I was, losing my freedom and being the best mum I could be. It’s a horrible place to be.

Thank you for your kindness.

 

[2Cor.12:19]

Any advice on recovery?

I carry so many negative thoughts about myself plus all the things I can’t do right now like in my new post today so I think all of that weighs me down and the guilt I carry too. The grief of who I was, losing my freedom and being the best mum I could be. It’s a horrible place to be.

@Jemima37 You are so welcome. I love your new profile photo. What a beautiful family you have! You truly are blessed.

I wish I could give advice on recovery but unfortunately, I have never fully recovered. I'm in my late 60's and am still sick, though not nearly as sick as I was those first few years. My first 5 years were the worst in terms of being sooo sick that I was bed-bound most of the time. The following years were 1 step forward, 2 steps back, until about the 10 year mark. Then at around 10 years for no apparent reason, I suddenly took a big leap forward to about 75-80-% of normal. Since then it's been up and down, some years are better than others.

For instance, I live on the West Coast of the US and 7 years ago I was able to fly Washington DC and walk everywhere for 2 days - to the Smithsonians, Lincoln Memorial, etc - then we took the train the New York City and walked all over the there. Had a fantastic time even though I got PEM afterwards - but It was worth it But now I'm lucky if I can walk around the grocery store! I have to do my housework in small increments and rest after taking a shower.

I've learned to take it as it comes and roll with the punches. I just try to pace my activities as best I can and avoid stress whenever possible.

I know it's not easy, but I believe it's important to maintain a positive attitude. Everyone has their own way of learning to cope and mine has been to ask for God's help. Don't mean to sound preachy but turning my thoughts upward instead of inward kept me from losing my mind completely. When I'm too sick to read I read the Psalms.

Don't lose hope. Kick those negative thoughts to the curb and put them in their place. Your family obviously loves you. This illness has many twists and turns, and in time I'm guessing your current situation will be much improved. Try to be patient.

 

[EddieB]

Reading all these stories helps me to know I’m not alone.
Thoughts, hope, and prayers for healing for each one...
E.

 

[Wishful]

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

No one yet has answered that this (anhedonia?) does pass. I was recently thinking that mine is getting gradually worse. I can find the energy to do immediate tasks that need doing, but optional tasks just don't get started. Has anyone gotten into this state and then recovered their interests in hobbies or other activities?

 

[2Cor.12:19]

No one yet has answered that this (anhedonia?) does pass. I was recently thinking that mine is getting gradually worse. I can find the energy to do immediate tasks that need doing, but optional tasks just don't get started. Has anyone gotten into this state and then recovered their interests in hobbies or other activities?

Yes. Although relapse are common.

 

[YippeeKi YOW !!]

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?

I couldnt read your whole post because the size of the type was, for some reason, jarring and anxiety producing, like being repeatedly yelled at ..... I think I got the gist, tho ....

Yes, I also get waves of battle-fatigue that leave me wondering why I keep trying, fighting, researching, trying some more ..... tiresome, I know.

Thu time and trial Ive learned that this is a temporary condition, and that if I give into it fully I'll be totally lost. So I don't. I focus on gratitude, the temporary nature of despair, and anything external that distracts me if only for a moment.

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.

It doesn;t sound silly at all @Wolfcub. I'm a HUGE, firm, devoted believer in the power of gratitude, however small the thing you;re grateful for may be.

Gratitude feeds some ephemeral part of the soul, where despair and self-pity suck the air out of it and leave it in bleak, increasing darkness.

Some days I can only manage being grateful for the next lungful of air, for the beauty of any small thing in my periphery that catches my eye, for the PR site that gives me access to research and companionship, for the fractious laptop that gives me that access ....

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.

Actually, yes, Drs DO have access to those tests. They just prefer to rely on the lazy approach of only evaluating your TSH which isn't a function of the thyroid at all, but rather the pineal gland.

Do a little research and figure out what tests might be helpful, beyond a FULL thyroid panel, which would include free T3, freeT4, antibodies, etc, and should be the automatic action of any GP or PCP with half a brain and an actualized conscience.

Sorry for the vent. Some things just piss me off

 

[YippeeKi YOW !!]

No one yet has answered that this (anhedonia?) does pass.

See my post, above.

Yes, it does pass, but not if you give in to it.

It takes a little effort, sometimes a lot of effort, to force it back into the pit of darkness that it worked its way out of. It's stronger when you're tired and drained, a condition so endemic to this illness that those bouts of doubt and fear are pretty well-known to most of us, or at least many of us.

Gratitude is a strong ally, as is any kind of positive distraction you can find that works for you.

Repetitive rumination on the horrors of this constant little burrowing badger of an illness is counterproductive, as is protracted self-pity and self-focus, which is where distraction comes in so handy.

It WILL pass, at least it always has in my case. It's not a fun journey, but it has a beginning, a middle, and an end. It also has an unwelcome way of coming back from time to time. It's paramount to remember that despair is a temporary condition when it does.

 

[lenora]

We all have to find whatever works for us. Please rest assured that it's a long and winding path to constantly keep re-making ourselves, but I've found this to be more worthwhile than anything I've ever undertaken (& I remade myself 7 times in different careers). Surround yourself with positive people who bring light into the world. Don't isolate yourselves, and ask them about their lives. It's too important not to do so. I've lived with many, many concurrent conditions over the years...ME/CFS was never my primary diagnosis, but I developed it over or perhaps even before my original diagnosis of SM/ACM . I've survived spinal cord (the worst of all) and brain surgery and multiple hospitalizations in between times. If I can do it, I have every faith in your abilities. Go, in kindness and enter a new day and a new you. It can be done. Oh, by the way, there are plenty of people available today to help you with SSI or whatever your needs may be.

One other thing: Yes, I'll definitely check on the TSH levels. It's hard for me to believe that I dropped the ball on this one, but I did. Although at this point, I'm no longer interested in cures for myself. I'll be turning 73 in another mo. and my hubby's going to be 76. If we just return to the life we had, I'd be one happy camper. True, most other people see it as limited, but I know...and he knows, what I (we're) capable of. Thanks for your interest.

 

[lenora]

See my post, above.

Yes, it does pass, but not if you give in to it.

It takes a little effort, sometimes a lot of effort, to force it back into the pit of darkness that it worked its way out of. It's stronger when you're tired and drained, a condition so endemic to this illness that those bouts of doubt and fear are pretty well-known to most of us, or at least many of us.

Gratitude is a strong ally, as is any kind of positive distraction you can find that works for you.

Repetitive rumination on the horrors of this constant little burrowing badger of an illness is counterproductive, as is protracted self-pity and self-focus, which is where distraction comes in so handy.

It WILL pass, at least it always has in my case. It's not a fun journey, but it has a beginning, a middle, and an end. It also has an unwelcome way of coming back from time to time. It's paramount to remember that despair is a temporary condition when it does.

Yes,

 

[Rebeccare]

This thread has been re-opened. If you have not yet taken the time to do so, please review the forum rules.

 

[hb8847]

If it hasn't already been mentioned there are lots of recent medical advances linking depression with chronic inflammation. (There are tons of articles about it online). And inflammation is itself also obviously linked to CFS so it's understandable that CFS would also be heavily linked with depression.

And not depression like sadness or whatever but the clinical term that you seem to be describing - a loss of interest for doing things you previously enjoyed etc.

Speaking from personal experience depression (in this sense) has very much been a factor in my illness and was present actually before getting my CFS (in my case whatever has caused the CFS was also causing depression, and I know now the latter was the 'canary in the coalmine' of these deeper physical health issues, so to speak) and I completely empathise with the feeling of losing interest or motivation in things. For clarity my health issues appear to be mainly gut (SIBO) and methylation related.

Regarding my depression, the weird thing is, there are so many things I want to want to do, if that makes sense? Like when periods of inflammation die down for me, I can feel my motivation coming back and it's great to know it is still there, waiting in the wings for when I'm better.

This is the attitude I now try to take with it. I believe that depression is in many cases your body's way of forcing you to lose interest in these things, because being highly focused being very mentally active expels a high amount of energy (the brain being the biggest energy sapper in your body) which leaves less for your body to fight off whatever is causing the inflammation.

Kind of like when you've got the flu and your body is fully wiped out and in bed - it's because it needs every ounce of energy to fight off that flu and so forces you to lie in bed feeling like crap. Same with depression (not all types of depression, but at least some, and I've no doubt more than most people give it credit).

Anyway my point is to maybe see it as your body trying to tell you something, that perhaps something is causing your inflammation to be high and that this is in turn causing at least some of your loss of motivation. You've got this far and you've got enough desire to write this post here concerned about where your motivation has gone - it doesn't sound to me like you're someone who's mentally checked out and just isn't bothered. You want to live, you want to be motivated, it's just not there for whatever reason. This is what the situation is like for me anyway and I know from experience that it can come back.

I hope this isn't out of line for me to say all this, and sorry if this isn't your experience or if you don't think it's relevant to you. It is to me though, and if there are other people out there going through a similar thing I think it's wise to consider physical inflammation in the body as the cause of a lot of weird and worrying things going on in their head.

It's very easy to feel with depression a sense of self loathing, or being self critical for having mental issues which society often treats as less important than the physical (although this appears to be shifting), when It could well be something being done to them and their body reacting to it, rather than them failing to do something and it being their "fault", or whatever.