17 responses to “Fibromyalgia/CFS & Friendship: Seeing Through Invisible Illness”

  1. Jennifer

    Dear Lisa

    Thank you for this blog … I have had it said, “you look well” or “you’re always sick”, so identify with what you have written, and the feelings I end up with because of this. I have FM and one day I’m up climbing the hills and the next I’m out walking around our neighbourhood, and the next I wake in pain and am struggling to walk. It is like I have grown to the age of 110 in a few hours. For the past three years I’ve tried to finish University papers, but have had to end all three, because the difficulty to write an assignment became a huge challenge, which once it was not. I’ll be okay writing and finishing a couple of assignments and then I find I just cannot collate or remember any information to be able to write another, despite the encouragement from the tutor. I too have posted this on Facebook as it is written so beautifully outlining exactly what happens. Amy Lynn Hunt – I work from home and my work colleagues/supervisor will happily tell that one day I’m box-a-birds to work and the next I’m not. It makes no difference where I am! Blessings and love to you Lisa & you all who endure these ailments.

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  2. Benefits of Fibromyalgia Support Groups in Los Angeles - Pacific Institute of Medical Research

    […] the afflicted, confounded by the fact that those with the disease often appear healthy, states LivingWithCFS.com. Looking healthy may cause people to question the severity of the symptoms (or deny that the […]

  3. Marie

    Hello Lisa,

    I just wanted to take a moment today to thank you for your blog. I have psoriatic arthritis, fibromyalgia, suspected cfs, anxiety, adhd, depression, asthma, ibs, tmj disorder, spinal cord problems and a whole host of other health issues I just can’t seem to keep up with anymore.

    It can be very lonely sometimes and I don’t have many people that I can talk to about it or that I feel comfortable telling the truth about how I’m feeling. I tend towards the “oh sure, I’m fine.” response even when it’s written all over my face that I’m feeling awful. While I’m feeling so low, you’ve managed to put things into words that I couldn’t and helped me breathe a sigh of relief to know that I’m not alone. I’m still coming to terms with all of this and the incredible isolation that comes along with it. Your words have given me something to lean on when I feel like I might fall, and I want to thank you for that. I think it’s important that you know that when you’re exhausted and even spending ten minutes typing is causing unbearable pain, that the heart you’ve put into this has made a big difference in the lives of many and it’s so very much appreciated.

    Marie

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  4. Amy Lynn Hunt

    I was doing SO much better the past 2 years when i was able to move out of my parents’ house, it has mold in it and i am so allergic. But we lost our savings and i had to come back – and i am back in bed again, every day, all of the time. Everything i worked so hard for for 2 years is gone.

    I had 2 years of feeling like almost a normal girl again – it feels so cruel that i had that and lost it. I got through 20 years of this, and now i think …. i can’t any more. I am alone & cut off from everyone and have never been more depressed. And i can’t tell anyone. So at least i guess it helps to tell you guys. I don’t know how to do this anymore.

    Reply
    1. Shirley

      Dear Amy. I felt so sad for you after reading this post. It is so easy to feel alone, but I wanted to share something with you.. After becoming ill 2 years ago with something like flu/cold, I have never got over it. I did get back to work on a very slow phased return but after 3 months going in on bad day set me back and I am still off work. My condition got worse in August, I am convinced that stress, as well as stretching myself too far played a part, but stress most of all, as, since then I have got worse with ME/CFS and fibromyalgia.
      having an all out “discussion” with my daughter yesterday we both got very upset and she said how isolated and lonely she felt looking after me. No-one else helps -there are the 2 of us, and though my family is not that far away my 24 yr old daughter has done absolutely evrything for me from the beginning. She’s the one who says “you’re doing too much”, and I can’t thank her enough but yesterday, when I felt at my lowest for a long time I felt like no-one cared. She feels that no-one cares about her doing everything for me. It has always annoyed me that if I mentioned something to somebody they would say “can’t your daughter do it?” What is she- a machine? I don’t like people to talk about her like she goes on forever, because she can’t, just like I can’t.
      Anyway, my point was that, at your low points think of those who care for you. They do it out of love.

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  5. Sheelagh

    Thank you so much. I find people saying things like…”slowly build up what you can do (e.g walking distances) until you can do it and then you will be okay”. I have added this article to my facebook page for friends and relatives to read as most people don’t ‘get it’ that I can do something one day and even have difficulty showering the next. Thank you for letting me know it is ‘not just me’ and giving me somewhere to direct people. Yes, I have also ordered some of the books. You have given me more strength…bless you!

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    1. Amy Lynn Hunt

      I don’t understand why people think they are allowed or encouraged to give us advice, it is so odd. I would never think to say “If you just didn’t eat the wrong food, you wouldn’t have diabetes”. Because that would be stupid 🙂 And no one asked. And i don’t know anything about diabetes. But EVERYONE seems to have an opinion about Fibro and what we can and should be doing.

      If one more person tells me to *just* “work from home”, one of our heads will explode! Ack.

      Reply
  6. Lucy

    Hi Lisa!

    Thank you so much for your blogs, and for putting so beautifully, into coherent words what I couldn’t! I shared on my Facebook page, and hope that your beautiful writing will help people in my life to understand a little bit more about Fibromyalgia and the impact it can have on our lives.

    Have a great week-end x

    Reply
  7. Annette

    beautiful said, its exactly how I feel and couldn’t put into words, just found out blog today and looking forward to reading more. Bless YOU!!

    Reply

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