I’m still here… But still going to stay away.

Hi family and friends,

I just wanted to thank you all for your kind messages and support. Sorry I haven’t been able to respond yet. I’m still in bad shape. Sleep has disappeared once again, pain has skyrocketed, daily headache, neck stiffness, back pain, tight chest. Im swollen, sore, cowering from noise and utterly exhausted. I haven’t been able to wear my cpap for weeks because my nose has been stuffy and that makes any sleep I do get unrefreshing. I’m panicking, of course. What’s causing it? What’s my next move? New drug? Start supplements again? I’m cycling through the sleep drugs again with no luck.

I’m thinking of you all and hope you understand my lack of communication. XOXO

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36 thoughts on “I’m still here… But still going to stay away.

  1. Jackie says:

    We understand! Don’t worry about us, worry about you — that’s all we want from you. 🙂

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    • E. Milo says:

      Thanks, Jackie! When I feel this awful, you all mean more to me than ever. I’m not alone, I’m not alone, I’m not alone. 🙂

      Like

      • Jackie says:

        You’re not! I think of you all of the time and I know you are a thoughtful, caring woman, as does everyone else, so never put pressure on yourself to reply and “catch up”. I know I just leave comments so you’ll know I care or to share thoughts, I don’t sit around thinking, “Now when is that Elizabeth going to reply? It has been x days!” If I could have you reply or have you save even as little as 1/1,000,000 of an energy unit, I’d choose your energy every single time.

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      • E. Milo says:

        What a great comment. You say it like it is, always. Thank you!:)

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  2. Can I offer something from my own experience? Don’t panic or stress, accept it because sometimes the downs just happen, they don’t have to a reason or a cause! I know it’s easier said than done though. Thinking of you. 🙂

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    • E. Milo says:

      I know, I know, thank you, I appreciate this. It’s just that I had a stable baseline for so long and I just need a bit of respite from this to see the light. My fear comes from not making a move today to improve tomorrow. What can I change to improve my chances for a better tomorrow? Because obviously what I’m doing isn’t working. Rhetorical question, of course, just explaining what my brain does: “what’s my next move??” Thank you for the comment!

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  3. Trisha says:

    I always feel disappointed, scared and, frankly, more than a little pissed off when I have a setback. We just had a huge weather change – from summer straight to winter – I wonder if that could be part of it? It’s definitely messing with me. Take care and I hope you feel better soon.

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    • E. Milo says:

      I would welcome pissed offness! I seem to be able handle anger better than sadness. Anger comes more naturally to me (is that a good thing?!), so I’ve found the sadness of the last few years really draining. Thank you for the comment. Maybe it does have something to do with our weather. Did you see this week? High of 67 Sunday and then high of 55 the next day? That sort of drop can’t be healthy! It does affect my sleep for sure. I was too cold so the next night I turned the heater on its lowest setting and I woke up too hot… I’m like Goldie Locks and the too hot too cold porridge! Nothing’s ever perfect. 😉

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      • Trisha says:

        I agree about the sadness/anger issue. Sadness is so much more draining than anger. Sometimes anger is the fuel I need to get some housecleaning done! I haven’t found sadness useful for anything yet though. I’m right with you on the Goldilocks too hot too cold thing too. I have trouble regulating my temperature anyway, but this week was particularly challenging. I thought it was hormonal but, after hearing you’ve had trouble too, I’m thinking it is a weather thing. At one point today, my core was too hot and my extremities were freezing, icicle hands, goosebumps and everything. It’s so crazy!

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  4. MCS Gal says:

    Take care of yourself.

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    • E. Milo says:

      Thank you! I have a question for you. Before I realized the extent of my sensitivity to chemically smells, we painted one of our rooms with cheap paint and put up an ikea wardrobe (it stank and my husband opened the boxes in the room and and it left a film of dust over everything for months). It’s been about a year now and that’s where I do my meditating and try to ignore the faint smell. I don’t know if it contributes to my symptoms – I don’t think so. Anyway, I’m thinking of turning that room into my bedroom- do you have an opinion on when new paint is “safe”? This is all convoluted since I spend half my life in that room anyway and try not to think about it… But I wonder if sleeping in there would be a poor choice… Thank you!

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      • triciaruth says:

        Try and find out about clay-based natural paints. They’re more pricey but no harmful chemicals.
        I hope your sleep returns and things start to improve soon.

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      • E. Milo says:

        Thanks so much, Tricia Ruth! I really appreciate the sentiment. I will look into clay-based paint. Thank you for the tip!

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      • MCS Gal says:

        I really don’t know. I do know that when we have used stain barrier paints, I have had to be out of the house until the paint was totally dry and then I was fine.

        Sometimes I haven’t realized something was a problem for me until I have totally eliminated it. You might try staying out of that room for a couple days and see if you have a reaction when you walk back in.

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      • E. Milo says:

        Thank you for the advice. I’m kind of happy to know paint hasn’t affected you terribly adversely before!

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      • MCS Gal says:

        Just remember that you are your own best judge. If you think something is bothering you, it probably is even if it doesn’t bother someone else.

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  5. stacie says:

    Stay strong. It wont last forever. Relief will come again.rememver CFS is the rollercoaster that is NO FUN.lots of ups and even more downs. You are nt alone or forgotten. We are here for you.

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    • E. Milo says:

      Thank you, Stacie! Damn, it’s amazing hearing from people who get this! No one deserves to ride this roller coaster. And, by the way, where is the arms-raised, wide-eyed, big smiley weeeeeee fun part of the roller coaster?! The part that makes you want to wait in line to do it over and over? I can’t wait for that part of the ride. 😉
      Hope you are hanging in there.

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  6. Zuz says:

    Yore not alone, even if it feels like it!
    And the paint idea is definitely one to explore more….
    Love you!

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  7. Stina says:

    Oh my, hang in there!!! I will send you whatever positive thoughts and prayers I can that this time will be temporary and SHORT!

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    • E. Milo says:

      Thank you so much, Stina! Right back at you! Your last post broke my heart (and made me laugh- because you’re a great story teller), so I know you’re going through your own rough patch. I’ll keep you in my thoughts.

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  8. I’m thinking of you and sending you as many happy positive vibes across the pond as my poorly body can manage! What is up with the universe at the moment? Are the planets out of line or the ME/CFS gods having some kind of major bust-up up there? There are so many of us suffering worse than our ‘usual’ at the moment; so many of us mid flare. Something must be going on. Maybe the change in seasons is to blame, who knows. All I want is for things to settle down for you, for me and for all of our other lovely virtual blogger friends who are suffering so much at the moment. Rest, try not to stress and ride the rollercoaster out until more passive waters arrive. xxx

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    • E. Milo says:

      Oh no, I didn’t realise you had been struck down because of your appointments – I was still imagining you taking nice walks in Sussex! I guess I’m a little behind the times. Weeks disappear when you are just waiting for some relief. Maybe the season change, maybe my bedroom change (from when my mum was here), maybe hormonal from period, maybe my brain being ruled by my body… Whatever it is, please let it stop! I’ll send My healing energy and peaceful thoughts right back to you. 🙂

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      • I’m with you on that one – don’t care what’s causing it just make it stop!! Sussex seems a long time ago, tho I have a horrible feeling the trip was part of the problem. Thank you for your healing thoughts, mine are still coming your way too xoxo

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  9. You are not alone, wishing you well, try not to stress, ME is just a bitch at times, there is no explaining her. Who knew a visit to the dentist would leave my left leg not wanting to work? She defies logic. Sending you hugs and thinking of you. xxx

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    • E. Milo says:

      Oh no, Marie! I’ll have to read your posts to find out what happened. I’m so sorry! I have a bad tooth I have been ignoring, eek. Thanks for thinking of me – and I you. X

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  10. dawnhosking says:

    Hope you feel much better soon, stay strong girl 😉

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  11. rachelmeeks says:

    Keeping you in my thoughts!

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  12. Christine says:

    I completely understand! Thinking of you and hoping you have an upswing soon. You’re such a strong person!

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  13. Curiosity says:

    So sorry to hear that you’re suffering, but very glad that you’re going to be taking some time focused on recovery. I know how hard it is to give up those little ways we get to still feel like we contribute to the world, but I also know how draining they can be when we’re running on empty.

    Take good care of yourself. Don’t you dare push yourself to get back here writing before you’re really ready. We’ll still be here, and will still be thinking of you the whole time. Rest well.

    Like

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