I had a few days of feeling better. It was so good to feel more normal. Then, of course, followed with the same...a crash. This is so hard. I try not to think, oh..this little bit of improvement means I will continue to improve, feel batter and then...I will be like I was before I became ill. I try not to do this to myself, but I do. Over and over again.  Am I  in denial?  How  can a balance be reached? Of having some hope and accepting that this is what I have to live with....with no effective treatments and no hope of ever getting well again?It only makes it harder for me when I crash. How do I maintain some hope while not falling into that way of thinking?    I miss my life before I became ill..so I know I am grieving.  The losses have been so great. Suggestions please?

7 Replies

  • Hi Tewa,

    Relapsing conditions are so hard to emotionally deal with - they get your hopes up then knock them all down like dominoes  again. Progressive ones are equally cruel, reducing function that you have to keep accepting and adapting to.

    Are you struggling with pacing ? Are you unable to recognise when you are starting to overdo things until it has gone too far and your body shuts down to enforce a long rest and recovery period ? I still do this ! ! ! I  am often unaware that I am too tired until too late but other times I know full well when I am pushing it ( naughty me ! )and have to accept the 'payback' as part of the process - it is worth it once in a while to achieve something I really want !

    All I can say is that although I hate the useless days when I am exhausted and sleep so much, I am grateful for the periods in between when I can at least get some things done/ go out etc.

    Psychology told me this is called 'boom and bust', when we go all out while we feel good then become useless for a while afterwards, as we recover. An overnight 'normal' sleep is not sufficient to restore our tired bodies and brains, as we work differently to others and have a far greater fatigue level.

    All I can advise is that you rest well, do as your body says, ( body knows best ! ) and use this time to reflect with pride and happiness upon  just how much you managed before you crashed ! Hoping you will be restored and ready to resume service soon : )

    Take care,

    Angela x

  • Angela,

    Thank you for your response. All that you have written is so accurate. Yesterday I had a Barium Swallow Test. Last night friends had invited me out to dinner. I did both, which was too much. I have been so isolated and unable to socialize for so long. It was good to get out...but...I was having difficulties talking, word finding.. and so on. You know the symptoms, walking, talking, thinking. I am having more cognitive issues, making conversing difficult.  I do know that if I go out, even for awhile, then it's crashing for the next two to three days or more. Feel like I need to have some sort of life. 

    Unfortunately, I am setting myself up when I go to thinking that any improvements will continue and I am on my way to getting well. ..leading to an emotional crash when all returns to a flare-up...or to the status quo...the progression of this terrible illness.  

    Sometimes I do better with it than other times. Today I have been in the pits about all of it. Having this site for support has been so helpful for me. I feel so isolated in my community since I can no longer participate in the groups and activities I so enjoyed. And...friends do fall away.  

    Thanks again. 

    Blessings to you.


  • I think the old saying of 'Prepare for the worst, hope for the best' is a good way to look at things. Allow that you will likely  have a setback after a very active period, then if the setback is less severe than you thought it might be, it's a nice bonus rather than a disappointment ! 

    Friends, family and partners often get fed up when we can't honour a planned arrangement, due to fatigue/symptoms playing up or are no longer able to be spontaneous like we used to be. This is the time when you find out who really wants to understand and is willing to make the necessary allowances.

     Chill out, listen to music, watch garbage on TV or Youtube, whatever your guilty pleasure ! Or just plain sleep yourself back to recharged again : ) x

  • Please don't give up trying.  Trying your best to keep a positive attitude is so worth it.  Its better than the alternative, that is for sure. For some reason, all of us on here have this goofy test to go through here on this earth, some easier, some harder, but if you can be grateful for the things you can do, and yes, little things count.  But like stated before, you have to learn to pace yourself.  I myself am,terrible at it.  I am used to being on the run, always doing something for myself and others, but I was reminded in therapy yesterday that overdoing it the way I do is not giving me the time to think, meditate, relax. By keeping so busy, I am continually stuffing my issues in a closet, and not giving myself time to reflect and work on them properly.  Take the time to breathe, relax, find something new you CAN do, and learn from it.  I myself have found that the drawing I used to do in the past has been so theraputic for me, and actually slows the movements down for me.  It is something I am grateful for.  Again, don't give up, keep trying, baby step by baby step and you will make progress.  I have found that if I keep a little journal, and a spreadsheet of all the symptoms I go througj, and rate them from 1 to 10 each day, I am finding that there have been more good or reasonably good days than bad lately.  Day by day I don't see it, but when you put them all in perspective it just shows how much the change is there good or bad.  Best of luck to you and everyone out thers, we can beat this! 


  • 'Goofy test' lol !  I like ! : )) x

  • I know huh?  More like a cruel joke some days, but yes a test in a way.  A test to see what we can do with it all.  Can we pull through, can we make the best of what we are dealing with.  That is how I look at it.  I personally want to fight my hardest to come out of this better than what I went in with.  Its a test of courage, faith, physical, mental and spritually.  It Can tear you down and make you feel like you are going to lose it, yet at the same time it can teach you so much, and you have the opportunity to learn lots and lots of patience.  Yes, I would call this a test!  ;0)  May we all get a passing grade!  Best of luck to all. 

  • Thanks for your kind and supportive words.  Yes, feels like a test of stamina, of character, and grace under fire!

    Wanted to mention that I am feeling some positive results the last few days from using Newton's Homeopathic Pro Remedy for Extreme Exhaustion/Epstein-Barr, in addition to Doterra Helichrysum Nerve Blend Essential Oil. Hope this continues.

    Positive thougths and wishes to you.

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