10 Tips for Living with a Life Changing Illness

Absolutely brilliant post by Brigid for anyone with a chronic illness. Me and Dizzy shall be making note of them all. 🙂 xxx

Watching the Daisies

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In 2010, I was diagnosed with fibromyalgia, a chronic condition that affects millions of people around the globe. The majority of them are women. As yet, there is no cure.

I had enjoyed a successful career as a natural medicines therapist and teacher, but fibromyalgia forced me to stop working for 2 years, reassess my life and embrace a new normal. I eventually left my old career behind, and retrained in organic horticulture, teaching part time in schools until recently.

My illness taught me so much, and I will share some of my most important insights. Here are a few suggestions for living with fibromyalgia or another life changing illness.

Reassessing My Values

Illness forced me to reassess my values. Health is now my number one priority, before career, relationships, finances and all else.

I’ve developed a habit of asking myself ” Will this be beneficial to my health and…

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12 thoughts on “10 Tips for Living with a Life Changing Illness

  1. Stephanie says:

    Thanks for sharing this! I’ve lived with fibromyalgia for over a decade and it’s truly changed my life in ways I never imagined. This article was spot on with the advice. Even now I’m learning to make health number 1 because I struggle with thinking I can do it all…even though my body rebels. I’m in the middle of a flare up now that’s limiting me even more to what I can usually do, forcing me to stay in bed, and making me rest. Chronic disease and invisible diseases are very cruel since there’s often no cure and in many cases, like fibro, no outward sign of a disease. Thanks again for sharing! The more awareness of these diseases, the better understanding for the sufferer.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      I knew a couple of people with fibromyalgia and I know its difficult to live with. I have MS but there seems to be a lot of similarities between the two.
      I’m glad you’ve like the article. I read it and just thought how it applies to so many illnesses (I think even people without illness it would be beneficial for!). I still need to work on number 1 too. There’s often times I’ll do things I know my body won’t appreciate but I still do them and then end up having to stay in bed all the next day!
      I hope your flare up doesn’t last too long and you feel abit better soon. xxx

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      • Stephanie says:

        It really is similar from what I know of the two. They actually tested me for MS and for lupus before diagnosing me with fibro since I had so many symptoms that were consistent with either disease. That’s what makes fibro one of the hardest diseases to diagnose and treat. It’s comorbid with so many things and it’s possible to develop lupus, MS, Sjorgens Syndrome, Chronic Fatigue syndrome, etc along with it. Like I have 2 other autoimmune disorders as well and was told by my rheumatologist that once you develop one, it was more likely for your body to develop more since it was under attack.

        I really did enjoy the article! I’m having to force myself to put my health first. I’m having way too many flare ups lately, so that’s no good. I’m finally going to start working exclusively from home starting in August so I hope that helps.

        I think we protest our bodies control over us. I do. I want to do whatever I want and pretend it won’t make a difference. But yes, I find myself in bed or stuck on the couch the next day. It sucks for my 7 yr old when she just wants mom to play and I’ve had to explain why I can’t.

        I agree so many people need to read this article! I’m trying to be more open on my site about having fibro and my needs. I’m hoping to promote more awareness and understanding as I let people know why I’m taking breaks or can’t blog as much as I was, etc. There’s still so much lack of understanding of chronic disease that I really hope people can start to be more aware even if I make just a little difference!

        Thanks! I hope to feel better soon! I hope you’re feeling well!! ❤❤

        Liked by 1 person

      • dinosaursdonkeysandms says:

        I have heard fibro is more an elimination process to get to a diagnosis. Also have heard about once you have one autoimmune it’s more likely to get more. :/ I try to not think about that though!

        It is just very hard excepting that our bodies can’t do what they use too. I find it very frustrating at times that within a few months I went from being pretty healthy to having something that effects everyday.

        You will definitely make a difference by being more open on your blog! that’s the hard thing about chronic illnesses and especially if people can’t see them. I have a good knowledge on a lot of them now, but before getting MS I didn’t have any knowledge on them. Everything helps to make people more aware. 🙂

        I’m ok, but not great at the moment from doing too much. Maybe we’ll both put number 1 at the top of our lists. 🙂 Hope your Saturday is going ok. xxx

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      • Stephanie says:

        I’m so sorry to just be answering you! I’m still getting used to the WordPress app on my phone, and I’m missing comments if I don’t see them right away. So I’m looking under the comment tab from now on and not just All!

        I’m sorry your not doing so great right now! I hope you are resting today…if not do it, lol! My just kinda started lol. It’s just 10 am here in America, well in North Carolina, and I was plagued by fibros evil insomnia last night and finally fell asleep around 3, but was up at 8,fell back asleep and am now up. I feel like I didn’t really sleep and my body doesn’t want to leave the bed, so I haven’t made it yet. I know fatigue is a common MS symptom; do you also have trouble sleeping? I think that’s one of the hardest things with fibro …you are so exhausted all day but at night the insomnia is so severe you can’t sleep then you get a couple of hours so you wake up more exhausted. It’s a vicious cycle.

        Fibro is so hard to diagnosis. I started having symptoms around age 15 and only recently realized it as I’ve done more research. They still test me periodically for both Lupus and MS since I still have symptoms consistent with either or. I have constant pins and needles in my hands and arms, tingling of my head and face, tremor in one hand if I’m trying to do something really precise, and coordination problems at times. It’s odd and just gets worse. I don’t know sometimes what to think.

        Don’t dwell on the autoimmune issue!! Hopefully you will never get another! Good thoughts ❤❤

        It’s amazing how rapidly it can affect us. I’ve had this since I was 15, was diagnosed a decade ago, so I’ve technically had it 25 yrs and have been being treated for it for 10. I felt pretty okay until the past 3 years and it’s been a decline since with the past year especially being the worst. I can rest all day and still have something trigger it where I feel awful. Right now the heat is the worst. We’ve been having 95 and 96 degree days with the humidity so high it actually feels over 100 degrees. I can’t go outside for long or I’m done. And the heat triggers whole body itching which baffles my doctors. All I know is if I’m outside in heat I itch but as soon as I cool off it stops. I hate it!

        I hope people are interested in reading about fibro on my blog. It’s mostly been book related things since I started it in May even though I started it to be about books, sharing my life…raising kids, marriage things, just balancing life, and other stuff. That never happened since I had so many books to read and review when I started that every day when I started my blog I was posting a book review. Then I ended up on hiatus with pneumonia then I had surgery. Then I came back and announced that there was no way I could post 7 days a week anymore, sometimes 2x a day and would have a new blogging schedule. That #1 my kids needed me this summer and that was my priority. And #2 I had fibro and the stress of being sick, having surgery and stress had caused a flare up and I had to put my health first. The feedback was positive of do what you have to for your health. And some people asked about fibro.I thought about writing a post about living with it, but I wasn’t sure since I’ve mainly done book reviews. Do you think my followers would be interested? It’s definitely a topic that needs more awareness!

        Take care and rest today!! If you ever need a listening ear,I’m here! ❤❤

        Liked by 1 person

      • dinosaursdonkeysandms says:

        I have been resting and had my first hot stone massage today which was amazing! Did you manage to sleep any better last night? It’s very up and down with me. I can have a week of hardly sleeping at all and then sleep like a log all the next week! Not being able to sleep is awful though, especially when you do really feel tired. Do you manage to nap at all in the day?
        That is strange. They all sound like MS symptoms but if it was that they should be able to see it on an MRI scan. How long have you had them for? Is there medication for fibro?
        The heats terrible. I’m such a Summer misery but I just feel so much worse in the heat. I’m going through a lot of magicool this year. 
        I hope you’re ok after your surgery. I think people would definitely be interested! It’s one of those conditions people don’t know much about and I think they would be really interested to know about it, especially if they already know you through your blog. I say do it!
        We have also nominated you for these awards. https://dinosaursdonkeysandms.com/2017/07/17/10-blog-awards-have-made-a-happy-dizzy/
        And thank you, that’s so kind of you. I’m here too if you ever need a someone to chat too!  xxx

        Liked by 1 person

      • Stephanie says:

        Oh, hot stone!! I adore hot stone massages! I’m so glad you enjoyed yours! Did it help any? Massage is one of the things that is highly recommended for fibro although deep tissue kills me if I am in too much pain! I will literally tense in pain and start to cry if my muscles are already so tight and the therapist starts digging in, lol. So I like the stones a lot.
        Sleep last night was not so good until I finally fell asleep and then it was deep, deep sleep. It was so hard to wake up because I was so exhausted. I still am though and have been nauseated since last night for some reason. I have a bit of a migraine, so I hope that is all it is. It’s really aggravating.
        Sometimes I can nap but that depends on what my 7 yr old is doing. She’s good about playing and things if she knows I need a break and my older son is 16, so he is really good about watching her if I need to. I just hate to take a nap, but I know that I need to on the nights I’m not falling asleep until 5 am!
        They do sound like MS symptoms but apparently, the tingling and numbness are also fibro symptoms or can be attributed to having aura symptoms of migraines and I have chronic migraines too! They never did an MRI; they did a brain CT and 2 spinal MRI’s…those showed 3 disc herniations in my lower back and a disc bulge in my neck but no lesions. I’m not sure why they didn’t do a head MRI; they did a lot of bloodwork for every autoimmune disease under the sun from what I understand and tested for all the markers, etc and nothing came back positive even though I have symptoms that fit in pretty much each disease….but that’s the problem with fibro! It can be misdiagnosed as anything from MS to Lupus to Sjogren’s.
        They generally prescribe antidepressants to treat fibro pain like amitriptyline. It did nothing for me but make me gain 15 lbs. The only approved antidepressants for it are Cymbalta and Savella (not sure if that is the same name not in America, sorry…I believe they are duloxetine and milnacipran for their generic names). The Cymbalta worked for a while, but again, I gained more weight which only made my symptoms worse because of excess weight on my back, etc. So I made them take me off it. They use muscle relaxers, and those help when I’m really in pain. And antiseizure meds are the other drugs used the most for pain for some reason…either Pregabalin or Neurontin is prescribed. I take Neurontin every day, and I guess it helps, lol. I know when I’m having bad nerve pain that it does but I know it makes me dizzy since that’s a side effect and I think it makes me have some other symptoms since I’ve increased my dosage lately. I was on pain pills, but not anymore since they make me feel so loopy. There really isn’t a lot they can do. It’s mainly trying to rest, take care of yourself, I use heat a lot for pain, take supplements that are supposed to help, and hope for the best!!
        Ugh! I am trying not to go outside! I hope you stay cool and don’t go out if you don’t have to since it makes you feel so much worse!! That’s just not worth it 😦
        Thanks! I’m feeling better from my surgery just worse with my fibro, lol. All the stress triggered a flare up, but that is what happens when I get any kind of illness or severe stress. It’s certainly not as bad as it could be though so I’m thankful for that!
        Thanks so much for your feedback!! I will have to think of how to write something up without it sounding like I’m complaining or whatever. I don’t complain about having fibro; it’s a part of my life, so I just deal with it! And I don’t want to sound like I want sympathy. I guess since people have reached out and asked about it, I could maybe start the post out that way…maybe write about my typical good day and a typical bad day and put links to sites with info for anyone who wants more info. What do you think? I’ve never written that kind of post before, lol!!
        And thanks for the nomination!! I think I will do the Unique Blogger since I was somehow nominated for the Liebster Award 3 times last week, lol…that makes 5x since May, so I’m just going to put all 3 on 1 post and answer the questions! I’m not even sure I’m tagging anyway after that many awards!! And I was nominated 2x for the Sunshine Award in the past 2 weeks…that makes 4 times, so I think I will do the same thing. I love the awards, but I almost wonder if there is a limit to some of them. At least to the Liebster since it is to new bloggers. I don’t know though, lol!! Tags and awards are fun though!! But definitely the Unique Blogger I will take…I like being Unique since I apparently am according to my doctors anyway, lol!!

        You’re very welcome!! I know after living with a chronic disease for as long as I have how rough it is and sometimes how very lonely too when other people don’t quite get it. So anytime! Feel free to email too! 🙂 ❤

        Liked by 1 person

      • dinosaursdonkeysandms says:

        I loved the stones! They are so relaxing. Can’t wait for my next one now!

        I really like my nap times but that must be hard with a 7 year old to be able to just take time out. I hope you get a good nights sleep tonight. I always think deep deep sleep must be doing some good.  It might be partly the heat. I get sick a lot when the weather warms up. I’ll just be randomly really sick during the night about once a week for the first few months of Summer. It’s very strange.

        Can you ask them to do a brain MRI just so you know abit more about what’s going on? That’s really good your spine ones and blood tests came back normal but I think the brain one needs to be done too to rule out MS. I had to have a lumbar puncture aswell. What’s Sjogren’s?

        You sound like you do all the things I do like resting and taking supplements! The medication for fibro doesn’t sound great. I wish they had things that at least didn’t come with side effects. I always think what we have is enough without adding more to the list! But I know some can really help people. It just seems to be abit of luck with how your body reacts to it.

        That sounds good! Or even do a mini series of posts, like one on what is fibro, one on how it effects you and maybe difference between days? I don’t think people will think you want sympathy, its just sharing apart of your life and helping to raise awareness.

        That’s an amazing number of awards! I really like them too and always feel really happy when I get one but because I only post once a week I don’t like to do them all as separate ones because that would be a lot of weeks and I worry how many people really want to know that much about me! I like the Unique one too. That’s always a compliment to be called that.  I get called it all the time aswell. 

        Hope you’re had a good day and your migraines gone away. xxx

        Like

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