Losing your hope and drive to get better?

[Jemima37]

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.

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 ....

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

Hello,

Im sorry my original post caused you that. I’m guessing you mean the type style rather than the way I wrote it as that wouldn’t be my intention to sound like I was yelling haha.

Gratitude definitely helps and I do Chung my blessing daily, I just need to get back to gratitude journaling.

Thank you for your reply.

 

[Jemima37]

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.

Thank you for your reply. I agree with a lot of what you have said to be honest.
I am a very motivated person and like to do my hobbies and have plans, lists etc and did until recently. I guess that fighter in me is still there or she wouldn’t be here.

I do think our gut has a lot to do with our mental and physical health, most definitely.

Thank you so much for your reply. Very helpful.

 

[Jemima37]

@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.

Thank you so much. I truly am blessed to have them. That photo was 4 years ago, they’re all so grown up now.

I can relate to you, I have to rest after ten minutes of activity, showers etc. I’ve done a lot of housework the last two days as I’ve felt a bit stronger, my husband has told me off for it haha. Tonight I’m feeling out of breath which means I could be crashing., always a sign for me so I’m going to rest tonight. I’ve cooked dinner the last two nights aswell for us all which is a huge achievement. And I’m very proud of myself but now I just rest.

Thank you for your kind words I so appreciate them.
J

 

[YippeeKi YOW !!]

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.

If it isn't, it may be relevant to someone else reading this thread, either now or down the road .... y'never know, eh ??

 

[YippeeKi YOW !!]

@Jemima37
Instead of filling up a thread by hitting the 'Reply' button at the bottom of whatever post you're responding to, you can just highlight a small portion of it so the poster and subsequent readers know what you're responding to.

When you do that, a pop-up box will appear with 'Quote' or 'Reply' buttons. Click on the 'Reply' button and your highlighted portion will appear in your reply box, and you can write in your reply under that .... saves a lot of time and space, and encourages additional readers who might be daunted by the length of your quoted portion otherwise.

 

[YippeeKi YOW !!]

I’m guessing you mean the type style rather than the way I wrote it

Totally ..... it was posted in about 22 point type. Don't know why it jangled me that day, but there it is ....

 

[Jemima37]

No worries.

 

[Rufous McKinney]

Feeling just generally more unmotivated than normal, plus the protocols- the ME protocols...not motivated hardly there either.

Its just hard day after day to stay on whatever it is we are trying to stay on.

I can tell I'm just fed up at the moment and likely this will pass.

 

[starlily88]

being self critical for having mental issues which society often treats as less important than the physical (although this appears to be shifting),

Great post, thanks.

 

[YippeeKi YOW !!]

@Rufous McKinney

I can tell I'm just fed up at the moment and likely this will pass.

I sooooooo know what you mean, Red, at least I'm deeply familiar with my version of that, which I'm guessing isn;t too different from yours, from all of ours.

There just comes a time when I can't ram down one more supplement, suck up one more organic veggie juice, whip up another of my quirky little herb-and-spice-teas which usually seem to help, when I can't stand another effing round of research for whatever will-o-the-wisp I'm chasing this time in the hope that it will totally turn this lumbering bus around, or read one more research paper or science-y thread.

When even the effort to be positive slips away, waving at me and disappearing merrily around a bend in the road. When I can no longer kid myself that the toll that this shoddy little pick-pocket of an illness has taken hasn't left tracks and traces all over me, some probably irreversible ....

It WILL pass. It always does. Just remember that. This too shall pass. It helps to find anything to be grateful for ....

For one thing, you are NOT alone Red, we're all here with you .

 

[Wishful]

Feeling just generally more unmotivated than normal, plus the protocols- the ME protocols...not motivated hardly there either.

Me too. I'm wondering whether it's a symptom of ME or caused by the limitations from ME: lack of some food/nutrient, lack of socialization, lack of satisfaction of working on a project. Our lifestyles are drastically different from non-ME people.

 

[EddieB]

For one thing, you are NOT alone Red, we're all here with you .

Hugs to everyone...

 

[Rufous McKinney]

Me too. I'm wondering whether it's a symptom of ME or caused by the limitations from ME: lack of some food/nutrient, lack of socialization, lack of satisfaction of working on a project. Our lifestyles are drastically different from non-ME people.

Well, it seems totally understandable that we experience cycles and episodes and This too Shall Pass. Or persist longer than invited. So its fall, dust self off, bootstrap, lift. Try Again.

Be kind to self.

 

[SlamDancin]

I’ve had considerable gains and I still get extremely frustrated at times and sometimes just give myself breaks where I know I’m going to trigger PEM but that the recovery will be there we just need to get there and it may be a long road for some of us

 

[Jemima37]

Thank you all for your help when I posted about this.
I have still lost interest in reading but weirdly I’m fine about that now. I’m interested in crystals again. Enjoying cleaning the house, sorting and decluttering the house, meal planning, playing with my pets, focussing on keeping my pets happy, time with my kids, tv, etc.. Yes I’d lost all interest in my hobbies but I think a lot of that was just my interests had moved away from certain spiritual things and because I’d always been a reader, crystals, meditation, yoga etc I beat myself up. I also think I was just too tired to read as I couldn’t retain the words I read. I’ve given up worrying about it now and my other interests are back plus some new ones. I think I did lose my mojo for a while due to the worry of Christmas that I do each year thanks to CfS, but I realise now it wasn’t the dreaded depression from 2018 returning like I feared it was as I don’t feel depressed at all. I know the way depression affects me and I won’t ever forget that awful year as depression made me very unwell and it was a worrying time.

Of course losing interest in things can be a depression symptom but I realise now I was just tired and worried about Christmas so I was too tired to read and so my hobbies.

I’m still not doing my research to get better from CfS etc like I used to writing my lists and I’m not reading books on anxiety like I used to do to help my recovery. I now just accept where I am and don’t try anymore. I still have anxiety and I’m learning to live with it and it’s no longer as bad as it was that bad year, and I accept it. I’m still in recovery from my breakdown in 2018 but life is now so much better and I feel much happier than I have in a while. Last year was me coming back from a horrific year in 2018 but now I’m rebuilding a new me who has learnt many lessons along the way. I know my social anxiety, agoraphobia and attending appointments etc will take time as I still have the CFS on top of the anxiety issues, but again I’m more accepting of the CfS.

Thank you all for supporting me. I’m getting there after that bad year, I am much better physically and mentally so I have to remember that. I wake up grateful every day for that. I just miss my gratitude journaling, evening bed yoga and meditation but hopefully my head will want to do those things again soon. It is strange I still have zero drive for those things as they were such a huge part of my day and if who I am. Weird, but I’m not worrying about it anymore. I just feel like my spiritual side has gone to sleep for now. I wish she would wake up as I miss that side of me 😉

Jem