
A Little Poisoning Along the Road to ME/CFS
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Im sad

Discussion in 'Lifestyle Management' started by shrewsbury, May 14, 2010.

  1. shrewsbury

    shrewsbury member

    I think Ive always been the type of person who acknowledges my emotions most of the time, but also can let them not be all of me, if that makes any sense.

    I had a conversation with a friend last week. I had said something to the effect that for over 6 months now, along with the deterioration of other physical and mental capabilities and/or shorter periods of functionality, its been getting more difficult for me to communicate in speech and in writing. (as Ive noted here on the forum, to stay involved I tried posting new info as reading, comprehending, posting and then trying to follow and respond are beyond me most of the time).

    So the circle of who I communicate with has been shrinking, and the frequency, extent and quality of communication with those I continue to be able to stay somewhat in touch with is deteriorating. And Im feeling a bit isolated, dis-connected, despite being so fortunate that most of them try to get it and continue to stand by me.

    The people in my life have always been my main priority and pleasure, and Ive been lucky to have a wonderful core circle of family and close friends + a broad circle of very good next layer out friends. I guess Id call myself a social hermit. Love my loved ones and value my time alone. Now, I find that Im just not functionally capable of engaging much, and when I do, I dont communicate well. And sometimes am not able to perceive that til later, or when I do see it, am unable to think on my feet and problem solve. All things I used to be good at.

    My friends comment was sad. And that has stayed with me. Ive realized that I am sad about losing, hopefully temporarily, the ability to maintain closeness with my circle and to communicate well with the outer world.

    And I think Ive been hiding that sadness from myself as I carry on, try to manage, try to cope, try to reach out and often not do it well, slowly fumble around trying to find new ways of maintaining quality of life with less juice to do so. As tomk so profoundly states when we try to add something (eg exercise), something else has to be given up. In my words (stolen from Rohinton Mistry) its a fine balance. The same is true for me when a bit of energy disappears. I thought I had everything pared down to the bare bones. But now have to figure out what else I can give up, reconfigure, reduce..... so that I can maybe be able to improve my ability to communicate.

    So this post is my (rather public) acknowledgement that Im grieving a loss of an important part of myself. This has always been a private process before this. Not really sure why Im sharing it maybe because I know most of you will get it (unfortunately).
  2. laura

    laura Senior Member

    Southern California
    Not having the clarity of thought and energy to connect with people, not being the person we once were, is one of the hardest parts of cfs. Especially because positive, supportive relationships are so critical to our well-being. It is truly a loss and an adjustment to find some kind of acceptance of who we are now, and tricky to figure out how to make the most of the energy we do have, while continuing the fight to get our health back.
  3. Esther12

    Esther12 Senior Member

    I also think that a lot of people don't want to feel too emotionally connected to someone suffering from a chronic illness. I don't think this is a conscious thing on their part, but it does seem that we are drawn to success - and that can't help but make us CFS patients rather unappealing. Sorry to hear you're find all this difficult. It is a bit of a bumer I'm afraid.
  4. flybro

    flybro Senior Member

    I for one am glad you did, I often find it too hard to organise my experiences into a coherent text, and when yourself and others do, it helps me to understand my experinces with this disease, so I'ld like to say thanks for this.

    tc & hugs
  5. Otis

    Otis Señor Mumbler


    Yes, you're right I understand - I'm right there with you it's been that kind of week. It's hard having to go through the loss, mourn & adapt cycle and then repeat the process over and over, faster and faster.

    I have no words of wisdom today (but I know others will!) except grab a hold of some shread of something positive as much as you can.

    All the best,
  6. Orla

    Orla Senior Member


  7. Misfit Toy

    Misfit Toy Senior Member

    Can I just thank you for posting this? For 2 years I have struggled with this. It's been horrible. I feel like I have lost that pep and energy needed and cognitive ability to communicate and seem excited about things. I also can't share sadness for someone or emotion that the normal population has. It's weird when someone calls you up and tells you that they are sinking in quicksand and you are too unwell to think of them or really show just how affected you are by their problem. I feel like they can read it. I want to offer them a wealth of sympathy and information to help them. Instead, I am on the phone trying to process it and I am so flatlined, that I sound.....flat and uncaring.

    My circle has come down to only ill friends. I have one well friend who has been my best friend. 1.5 years ago, I had ill friends, well friends and the superficial good time friend. I can't have that type in my life at all! They are gone. I can't go out and drink or socialize with people who only talk about Versace, vacations and the never ending party that is their life. I miss that I once could. I had fun with them even if it was superficial. I am now too sick.

    I have decided to cut down my work load, concentrate on myself for 3 months because I am exhausted and I have to. This whole turn in illness is making my world smaller. I like my space but having so much space is not good for me. I am alone most of the time and I feel like sometimes I need it and yet...I am craving emotional and spiritual bonding.

    What you say hits home; if you have x,y and z on your plate...you can't have a,b,c and d. I am right there. RIGHT THERE. Working causes me to have no time for anything. Not even my illness. No other people, etc. I am sad. I am grieving.

    I have to make room for just me right now. And so do you. Sometimes you will be able to talk and communicate and other times, you won't. It's horrible because communication is vital, but it is where we are.

    Acceptance is so hard. You are not alone...not one bit!
  8. Kati

    Kati Patient in training

    Shrewsbury, I have noticed for a while that I don't have energy to maintain friendships, and when some friends visit, it becomes harder to find things to talk about- In some ways I am stucked in the symptoms that overwhelm my life, the grief from my past life and it's rather difficult to stay connected if talking gives me a headache and sensory overload prevents me from going out and do things with them.

    I really really hope this is only temporary and that we will be able to build back once "this is all over".

    Thank you for sharing this important discovery about what's going on. And know you are not alone.
  9. Adam

    Adam *****

    Sheffield UK
    Sad made me take a look

    It is too late to say anything much, let alone what might make sense. I'll try tomorrow.

    The best of times...the worst of times.

  10. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA
    Oh my dear shrewsbury. I'm so sorry to hear of this. It's easy to forget what each of us is going through when we see our careful contributions to this space. You bring so much here that I see your wholeness, rather than your struggle.

    My biggest grief with this illness is on a personal, relational level. I have one healthy friend who I keep coming back by finding ways to pay her for some of her help I think she would love me anyway, but I make myself irresistible (ha!). I have another healthy friend who does not live close by and of which I am quite happy even when she tries to match my energy level, she's too intense for me. My other friends are sick. We're all so "needy" that it's hard to have flourishing relationships.

    I struggle to stay in touch with my children and grandchildren, my siblings and my mother.

    Until I found Phoenix Rising, and found that I was able to post and have people reply to my posts(!), I felt I had gone mute. I felt silenced. This place isn't everything, for sure, but it is a whole lot of something.

    It is hard to watch the years go by and my world grow smaller. It ought not to be this way.

    Thanks shrewsbury for sharing. I'm sorry you're feeling sad; you have a right to your sadness. I hope you can find comfort, too.

  11. CBS

    CBS Senior Member

    Western US
    Dear Shrewsbury,

    If it helps, you're not alone. I've started a few threads hoping to encourage people to recognize and mourn the huge losses that define CFS. At least for myself, failing to recognize these feelings just leads to longer, deeper periods of difficulty & pain down the road.

    I'm finding the present particularly hard as most of of wait in limbo (reading as much as we possibly can into every public pronouncement) waiting to see what new knowledge and treatments may come of the XMRV research.

    While in scientific terms, the process of replication, determination of causation, and treatment analysis is actually moving at a decent pace (the amount of interest in XMRV is impressive and should lead to many answers in the relatively near future), personally, at times all I can see are the pieces of my life that I'll never get back. Everyday there is something significant that leaves each of us behind.

    A week ago my wife moved to a very small town 300 miles away (once in a life time job opportunity). The plan is for me to move soon but first she needs to find a place for us to live and where I can get the rest & respite that I need. I just got off of the phone with her. She's going to a "locals social" in the new town. She's building a life some place else and this damned disease is keeping me from being a part of it.

    Thanks for sharing your sadness. None of us would have chosen this for ourselves but now that we're here, I'm glad that I have you (and so many other PR members) here with me.

  12. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    shrewsbury, so sorry to hear you're going through this. Social isolation is one of the worst parts of having this damn sickness, that's for sure. I hope your abilities return soon, allowing you to expand your circle. :hug:
  13. Dreambirdie

    Dreambirdie work in progress

    N. California
    Sweetie Pie Shrewsbury~~~

    I understand and can relate to "sad" these days. Love to you
  14. jeffrez

    jeffrez Senior Member

    Completely get it - I feel like I could have written that post. Well, except the parts about having family and friends and people around (that is such a thing, right? "people?" Is that the right word? I forget :-o).
  15. Dr. Yes

    Dr. Yes Shame on You

    Big warm hugs to you, shroo... and to all the rest of you.

    I'm glad you posted; this forum is the one thing I know of that relieves some of that maddening isolation.
  16. Greggory Blundell

    Greggory Blundell *****

    New Jersey, USA
    What strength you have, despite the illness. The courage that you display in just standing up and declaring in soft voice "I am not quite the same" is the ultimate bravery as it acknowledges a life...not lost, but clearly diminished. Marginalized. You're being assailed with no defense, and no one hurrying to offer his body to plug the breach. In the mean time, people close posture at best and at worse, walk away. And with every friend/family lost, you are self-defined as lessened. Self-defined. It's personal. Okay, ok. So. Screw them. Never forget you. You cannot allow yourself to be defined by their shortcomings. You are watching as they fall short...Not the other way around.
  17. dancer

    dancer Senior Member

    Midwest, USA
    Shrewsberry, you said it so poignantly and beautifully. Thank you. It puts into words some of the most painful losses I've been feeling recently. Helps me acknowledge that it IS so difficult and WHY it is so difficult. And sometimes just recognizing it all (and knowing others are fighting this same battle) helps me go on a bit more.
  18. starryeyes

    starryeyes Senior Member

    Bay Area, California

    I understand. Losing our social selves is one of the hardest parts of dealing with this illness to me. I'm not able to communicate well either. I am very sorry about the losses you're dealing with. What Greggory wrote is so profound. I think Esther makes a good point too. I think a lot of people do unconsciously or consciously step back from us.

    It helps me when I remind myself that this is normal for our situation and happens to everyone that has a major chronic illness that's not immediately life-threatening.

    Reaching out to others here is a great comfort. I'm glad you're here Shrewsbury.


  19. 2bushes

    2bushes Guest

    I am glad you wrote as well. This is all so hard and we are the only ones that understand. I have a roller coaster of feelings. It makes it doubly hard having had an 8 year 80-90% and was a very good actress. Just hang on, it will be a while but things are beginning to happen.

    A big hug!

  20. shiso

    shiso Senior Member

    I'm sorry Shrewsbury that you're feeling sad.

    I can totally relate to what you said in your post. My core family and closest pre-illness friends have stuck around for the most part (mostly by email and phone, since I had to move to a more affordable city when I got sick, which makes it easier for them), but even friendships that I never doubted would last a lifetime have changed and lessened since I got sick.

    My friends are having their first babies, steadily rising up in their careers or exploring second careers, and continuing to participate in formerly shared leisure activities (travel, exercise, shopping, etc.). I don't want them not to share these things with me, and I can talk about them and "relate" from memory of my pre-illness life, but those memories are becoming older and not having the "me that used to be" (successful, independent, intellectually energetic, fun, adventurous, etc.) to share the same kind of experiences has altered the balance in even my best friendships.

    I think it's also natural that we feel the losses more acutely when we're going through a downturn physically. I'm also going through a period when I'm doing worse after what I thought was some slow but steady improvement, and in my low moments I get a resigned feeling that it will be a matter of time that even the friendships that have survived so far (I haven't been sick very long compare to many others here) will fade away completely.

    When I'm too sick to keep up with emails or attempted plans to meet, doing my part in friendships feels stressful. At the same time, if I don't hear from anyone for a while, I feel impossibly isolated. I've been trying to get to a kind of equanimity about these things, but when the sadness hits I remind myself that anyone would feel sad under these objective circumstances; that I've already "survived" a lot.

    Thanks to you and everyone for sharing their thoughts, and hope you feel better (physically and emotionally) soon!

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