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  1. Ali Duke

    It can be so hard to get people to understand things like these. My son has special needs and when he was younger I used to get people asking when he was going to grow out of it or get better. I can’t imagine how hard things must be for you at times. Finding something to be grateful for is good, even when you feel like crap, thinking of something good can give you a little smile.
    #MMBC

  2. Kim Carberry

    This is so interesting to read. To read more about your illness.
    The illness sounds awful how it progresses. I had no idea. I’m glad your IVIG treatment is helping with the jerking. I hope you get some of the things you desire. x

    • Anne Sweet

      I’m thankful for finding Sheryl’s link up party. Although it’s awful to know that other people are suffering, it’s also makes me feel less alone and more understood. It’s so difficult to make people understand what it’s like living with a chronic illness, especially when you’d just rather forget about it yourself. And yes, I’m glad the jerking is improved, there was a time when I broke the leg rest on one of my wheelchairs through jerking, but now it rarely happens which is a big relief. And seeing my family happy is all I really desire (and the wish I live long enough to see my little man grow up.) xx

  3. Niamh Kane

    You hit the nail on the head. People really do not want to get into it with us because they get so uncomfortable with what to say when all we really need is a kind ear that’s not dismissive of what you are experiencing. You endure so much its bound to make you more resilient and better at dealing with it. But it must be so frustrating to be told you’re looking or getting better when you feel and know it’s to the contrary. It really is those simple desires that can be so heart warming and fulfilling when not only the TV gets drowned out but a little bit of yout pain. I really hope you get to enjoy some of those days this month. Xx

  4. Sheryl

    Thanks for joining us, Anne! I’m impressed with your determination to look out for the silver linings, and be grateful each day. Btw thanks for sharing this app – it seems to be exactly what I need! My psychiatrist asked me to chart my mood every day to see if there are any patterns in relation to my brain fog, and so far I’ve tried Google Calendar and my own Pages sheet but they aren’t so intuitive.

    Sending hugs and hope you get even better at coping with the stiffness. It must be scary when it hits, especially if you’re outside or there’s no one to help.

    • Anne Sweet

      Thanks for hosting Sheryl x Daylio is a really good app. and for a small fee you can fully adapt it to suit you, your moods, your activities, your feelings. And you get weekly, monthly and yearly charts to hand to see how you’ve been getting on. I love it.

  5. Laurie

    Thank you for helping all of us to understand this condition. You have raised a lot of consciousness today. And you were very effective at using all the prompts. I am desiring a cure will be found also.

  6. Jenny

    This really resonated with me. I think because we live in a time of such advanced medicine that everyone assumes that everything is curable. That if you get sick you’ll get better. And if you’re not lying in bed, or looking fevered then you must be fine.

    Really enjoyed reading this – it was wonderfully honest.

  7. Jayne @ Sticky Mud and Belly Laughs

    Although I haven’t gone through what you’re going through right now, I can totally relate to what you say about how people just don’t get it. A little different I know, but some people seem to think that just because Craig has now had his heart transplant, everything is solved and all is good and yes it has saved his life, but the future is still unknown to us. They don’t see the amount of drugs he has to take each day (42 meds a day) and how they effect his body and limbs. How he has to cope mentally with somebody losing their life to help save his and the list goes on. I think some people although not intentional just take things at face value. I’m so glad that your IVIG treatment is helping you and hope you get to do lots of things that make you happy, both big and small. xx #MMBC

  8. Alison

    Hello Anne,

    Thank you so much for sharing! I hadn’t heard of your condition before, though I, too, have myoclonic jerks! That feeling of not understanding is so hard to deal with – and with a rare condition, it’s hard to find fellow zebras who can truly empathize with what you’re managing. I’m going to check out Daileo too, but wanted you to know that you are not the only one dealing with your symptoms, even when you feel like it!

    thinking of you and wishing you the best!
    Alison

  9. Rhiann

    Hello Anne,

    Thanks again for writing such a wonderful and diverse post, love how these prompts can delve into so many different parts of living with a chronic illness. Like you, I have so many issues with people not understanding, and like you so how can we and get others to understand when often the doctors what is happening with our bodies! I love your sheer determination to continue to look for the silver linings in everything despite the limitations and difficulties created by your conditions! I hope you continue to be able to do so!

    Rhiann x

  10. Mrs A

    Thank you for being so honest in your post. I can see how difficult it must be when most people are able to offer
    only sympathy rather than real empathy. I won’t add further sympathy but instead will offer my admiration for you being willing to educate us via your blog, and because of your determination to still look for a positive in every day.

    #abitofeverything

  11. Naomi

    I’ve also used Daylio before, so I’m glad to hear you’ve injected some positivity! I have found with numerators tracking apps that however helpful they are, they often don’t help you be positive much of the time…plus health systems tend to help those who list more/higher pain problems so it’s a tough balance. Hope you know there are many out there who understand or can at least cross-condition empathise x

    • Anne Sweet

      It’s both a relief and very sad to know there are other’s that understand chronic pain. My Daylio lets me know if I’m suffering too much and then I can do something about it. But it’s also nice to see the positive additions throughout the month. You have to have something to live for x

  12. Lydia

    Anne,
    Thank you for sharing all of this. You are a very strong woman to be able to see that while others may want to see you as getting better, you realize you are more acceptance. I know what you mean about wanting empathy and understanding. I don’t have a rare disease, just a bunch of common ones that people prefer to deny (bipolar, fibromyalgia to name two), but I can empathize with you in so many ways. I look forward to reading more of your story.

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