Sunday, May 13, 2012

Anonymous Comment

I would like to share a comment I received on my last post. The first four comments were supportive. The last comment was the first negative reaction I have received. 
'us fibromites'.... there's such a self-pitying group-y tone to all this. Oh, it must be really difficult for you if a page changes shape or colour...

I can understand why moving house or changing jobs might be difficult for people who are ill, but seriously? You need an adjustment period because a webpage changed? I think thinking of yourself as a 'fibromite' who can't cope with anything can't help you to get on with life."

Ms or Mr Anonymous, I would like you to know that you have ruffled my feathers. If you had said these words face to face with me, we would have been in a heated discussion. I can only assume that you are on a Fibromyalgia site because you either have Fibro or someone close to you does. I suggest if you are friends or family of someone who has this chronic disease, that you begin at the beginning and read through my blog. In the beginning, I list my Fibromyalgia symptoms. If you have Fibro, you may recognize similar symptoms and realize that you have a friend who understands. If you know someone with the disease, maybe you will be more sympathetic. You may realize that others have the same symptoms and she is not crazy or that they have a disease with the right to be "self-pitying" periodically. In case you have not noticed, this blog is about MY journey with Fibromyalgia. If you do not have a positive comment, please do not leave one. If you do not understand Fibro, I am wide open to field questions.

YES you can ..... be patient and kind, eliminating negativity.
YES you can ..... be sensitive to others.

33 comments:

  1. what a rude comment! You are not a whiny self pitying type. Anyways, I do hope this month is being kind to you with the new job on the campsite! I look so forward to your posts! I hope your Mother's Day was awesome too!

    Heather

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  2. If you've been recently diagnosed with Fibromyalgia or are wondering if you might have it, you probably have a lot of questions. Some of the most common questions about Fibromyalgia are addressed here.

    ultrameal diet

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  3. I posted my various problems with your approach to fibromyalgia under the article '10 things not to say to someone who has fibromyalgia', which is how I found the site. I simply don't think the identification of yourself as someone who not only has a disease but is their disease, 'a fibromite', can be at all helpful. People with mental illnesses are generally encouraged not the consider themselves as mentally ill, but to simply learn to manage their symptoms and carry on, I do not see why fibromyalgia should be different. Reading what you had to say in the article 'what not to say to someone with fibromyalgia' did not make me more sympathetic to 'fibromites', and I explain why underneath it. (the penultimate comment and the one preceding it, not the last one)

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  4. Hello Deb - Please check out my blog to see if it is one you and your members might be interested in following. I am an MD/PhD and long-time fibro researcher who now has become passionate about spreading the word about fibromyalgia as a scientifically-proven physical illness... and I do so using humour, music and even occasional magic to make everything positive and fun. Anyway, my blog page is http://thefibrofog.blogspot.ca/

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  5. To be clear, my field question is 'why do you think defining yourself by an illness which will clearly get worse the more you focus on it (since symptoms such as pain and fatigue are heavily psychologically dependent) is a good idea?' I don't think believing that you're going to be troubled by even the most minor change, and 'accepting' that you're not going to be able to do as much as other people can ever be helpful. I've had serious, life-threatening health conditions that caused incredible pain and fatigue and it never once meant I couldn't keep up with other people, had to give myself extra rest or had to stop doing something I could previously do (unless I had to physically spend time in hospital in treatment). The mental fog I had as part of my illness was severe, obviously I don't know how severe anyone else's is, but neither do you. For all you know your mental fog is nowhere near as bad as anyone else's is. I accepted that was a possibility, 'fibromites' seem less keen to do that. I carried on completing a high-level academic course even though I had to spend hours on each page. Not thinking of myself as someone who couldn't do things is what meant I could do things, so I don't look well upon people who 'accept' that they're going to need to rest and look after themselves and take time to adjust and complain about pain and fog and tiredness. Those things are mental, whether their cause is mental or physical, and that means you can get over them.

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    1. It appears to me that you have done more to pigeon hole this blogger than she did. You are the one making assumptions as to what someone else can cope with. I think it is unfortunate that your personal experience has not made you more understanding. The truth is that every person is different and circumstances change the color of any illness. As a person living with this diagnosis I can tell you that one of the most important things you can do is understand your limitations and make adjustments so you can live your life to the fullest. I play Roller Derby, but if I tried to do everything in the same way as the other women I would fail every practice. I have to be honest with myself and others about what the reality of my capabilities are.

      There is an element of truth to your claim of mental control. Pain is a response in your brain, but one's control over it is also biological. Chronic, wide distribution pain is not something one can just think away. There is a cause that needs to be dealt with. Some of dealing with this pain is learning what your body can take. I have had to learn what kinds of stress I need to avoid and at what points I need to take a time out. Over time I have less pain and can handle more. But as soon as I stop paying attention to my levels of stress and I try to ignore and push through I find the pain come back worse than ever.

      Let's be honest, every person deals with limitations. For example I may not be able to push through a very intense academic course some times, but maybe another person wouldn't be have been able to take a hit on the derby track. Does that mean either of us is living in a state of personal futility? No, it just means we know what our limitations are and where we can shine and take advantage of it.

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  6. Here is a website that talks about related matters, take a look at it and, I’m sure you will find it interesting.
    www.fibromyalgiahandbook.com

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  7. I too have Fibromyalgia, its comments like these that made me want to create my blog! People just dont understand and it is so frustrating! I am glad to see your blog, I love it. Mine is not only about fibro, but also the anxiety that comes with it. I hope you will take a look TheOverUnderachiever.blogspot.com

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  8. Deb, I enjoyed reading a few of your posts. I just found your blog in searching for other Fibro blogs. I look forward to reading other posts when I have more time. To the Anonymous person with the question. "why do you think defining yourself by an illness which will clearly get worse the more you focus on it (since symptoms such as pain and fatigue are heavily psychologically dependent) is a good idea?"
    I will answer that though not directed at me :) I like you have things to say about everything so to start off with talking about having Fibro, sharing your journey with it, is not defining ones self with it. Your comment that it will "clearly" get worse the more you focus on it. Says who? I find that comment quiet ignorant, I don't mean to be rude just honest. Having fibro you deal with symptoms on a daily basis, pain often on a daily basis, it takes great strength and concentration to keep the pain volume turned down as much as possible allowing one to function the best they can. I agree that the thought "Oh I have fibro I can never walk/move/do anything at all every again" would be a thought I would try to help someone change. Though believe me there are days when that is exactly how bad it is and worse. Something I think you are missing here, or not aware of maybe? To give you the benefit of the doubt. Someone with a DX of fibro becomes what I call a FibroFighter, one very important task that fighter has is to spread the word about fibro. Spread awareness. We have medications that do just about anything, a pill for everything, we are cloning for goodness sake. Yet fibro is still a mystery. Fighters fight so that their children, your children, grandchildren do not have to. The lab rats if you will, trying out medications such as Cymbalta which can help pain or turn your life upside down. Alternative methods, supplements ... trying it all to see what works and what doesn't until someone finally figures it out. Not to mention a fighter who might be down, very down, wondering if this is something they can handle for much longer as it taxes us in mind, body, spirit, family, friends, work, everything. That person stumbles on this brightly colored blog and sees Deb had the same experience, same symptoms ... she is still going, she can relate, some times in a world where fighters are often brushed off as lazy, or imagining things, relating is what gives the strength to fight another day. One last note, paying close attention to symptoms is VITAL with fibro, sadly as things stand a doctor is more likely to lump all symptoms you present with as a fibro symptom ..this was the case in my sitation, which for me meant missing a serious problem that might not be so serious if it had been caught sooner. Being aware of our bodies, symptoms we have, aware of our limits, what we can and can't do or give is how one with fibro fights. More power to the positive "think right through it" people. I don't see many people following posters such as yourself around asking why you don't pay more attention, spread the word, or even have the grit to let yourself be known. Whether you have fibro, or simply heard of it .. education, knowledge ..that is power and now it is free via google ... best wishes to you in your own journey whatever that may be.

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  9. Here is a website that talks about health matters, take a look at it and, I’m sure you will find it interesting.
    www.fibromyalgiahandbook.com

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  10. I am going to answer as well, even though it is also not directed at me. :) It seems to me that everyone has different ways of dealing with illnesses like this. The commenter obviously did not agree with this method. Well, if you don't like it, go find another blog that aligns better with how you would like to deal with it and get your support there. That's totally fine. Who's to say what's the "right" or "wrong" method of dealing with fibro? Let's just admit it, we are all pretty lost here. Nobody can tell us much about it, so we just have to figure out what works for us. Different things work for different people. The blogger is entitled to her opinion, and many people agree with and are helped by her. Leaving nasty comments is pretty inappropriate considering this was made to support people, not bring them down.

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  11. I just found your blog and I think it is wonderful. I relate to so many of the posts you have shared and appreciate you.

    It is very sad that someone who clearly does not understand Fibromyalgia so easily lumps it in with other difficult diseases and then has the gall to say the Fibromyalgia is mostly a psychological issue in terms of how you chose to focus on pain and fatigue.

    However, I think it is probably good that this person is reading a blog about Fibromyalgia. Perhaps, they will learn something and become a little more understanding, because with the increasing diagnosis of Fibro, this person will most likely have someone they love in their life get diagnosed with it at some point.

    Wouldn't it be great if instead of likening it to their own experience with a different issue, they actually took the time to realize that everyone's experience is different and Fibromyalgia is most definitely not like every other disease or illness in the world?

    Sadly, for me the Fibromyalgia has never been easier simply because I tend to focus on the positives in life and try to focus on what I can do.

    The reality is it took a major change in perception to even be able to cope with the major life changes I've had to go through in the last ten years while doing my best to deal with Fibromyalgia.

    Additionally, I have had to accept that doing too much in a day causes me to be unable to do anything for days sometimes weeks afterwards. I must focus on what I can do and be careful not to overdo things. Frankly, this requires me to be focused on my body and symptoms. I still do my best to focus on positives and not let the difficulties bog me down too much.

    I just started a blog a few days ago on my experiences with Fibroat http://myinspiredlifewithfibromyalgia.blogspot.com/
    Please come check it out sometime.

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  12. To Anonymous,
    If you don't understand us FIBROMITES then just get off the site. We suffer from so many symptoms, they change daily. It IS a disease and we DO focus on it because we LIVE WITH IT everyday day 24/7. It is disabling to some of us and we cannot work, think clearly, sleep at night, etc. etc. There are 100's of symptoms. And believe me we just WISH we could go thru each day like a normal healthy person. We don't pity ourselves or fellow fibromites, we just try to help each other get through this, not GET OVER IT!

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    1. I have not been diagnosed with fibro, but have been with other autoimmune illnesses and have been told fibro is a possibility. Testing to come soon. Anyway, I tell people to acknowledge that it (illnesses) are there, but do not treat me like I'm sick. Basically meaning, understand my limitations, but other than that, don't treat me differently. I think your posts are quite positive and I love the "you can..." at the end of a lot of the posts! :)

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  13. To anonymous,
    I am happy that you seem to have been able to deal with all the bad stuff in your life. You are indeed blessed. Remember though, you are not in the shoes of other people and whilst you may have meant your comments to be helpful, you do not walk in Deb's shoes, you do not know her life or that of others, so please do not pass judgement on her or others and hopefully we will also return the compliment by not passing judgement on you.

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  14. Hi,

    Thanks for sharing some information about Fibromyalgia Symptoms with us because i do not have more information. But i think it is not enough information for me, so please share more information about Fibromyalgia Symptoms.

    Thank You.
    =============================================
    Chronic Fatigue Syndrome Symptoms

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  15. Deb, Thank you so much for your blog! The person that left the negative comment does not rate a reply. If they have Fibro then they will understand someday on their own journey. If they don't have it they will never understand. My husband has Post Polio Syndrome and you would think that with similar problems that he would be one of the first to understand the difficulties of Fibro... Unfortunately he is so used to my many years of perfect multi-tasking that I have to remind him that Fibro comes and goes and if I tell him that I am temporarily unable to do something that he haa to listen to me. How many Fibro patients have had a fight with their spouse because they had a bout of FIBRO FOG where the brain and the mouth do not want to function together and their partner thinks that not answering a question means that the Fibro patient is mad at them? I had that happen once and could not get my husband to understand that it was the fibro fog after the problem corrected itself. A few months later we were stuck in a traffic jam and my husband witnessed a bout of Fibro Fog from the onset to the return to normal. His comment was,"That was scary!" And I calmly explained that was what I had tried to tell him before. We have explained that situation to a husband who had not spoken to his much beloved wife for 5 days. So maybe the ill humored commenter will be lucky enough to find someone that can explain things to him or her face to face when they need the answer. I see Fibro as a disease that I have to deal with. It can change my life from moment to moment but I HAVE IT... IT DOES NOT CONTROL ME! I may have to juggle how I do things but I will not have FIBRO be how my grandchildren see and remember me! Hang in there everybody! We are not alone!

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  16. I wanted to share something else. I want everyone to know that it can get better!! I was diagnosed several years ago with fibromyalgia. At the time I could barely remember my own name most days, my hands shook so bad I didn't recognize my signature and I was in so much pain I could not work or do much of anything but stay home and try to survive each day. I found a great rheumatologist who specializes in fibro and my life has totally changed. I can work full time now, my hands have been steady for almost 2 years and I went a full year without any major pain! Fibro fog is a distant memory. I still have pain from time to time but it gets less and less frequent and I hardly ever have to take prescription pain meds anymore.

    I highly encourage anyone with fibro or who knows someone suffering with this affliction to read Dr. David Dryland's book The Fibromyalgia Solution. He is my doc and he changed my life. http://www.drdryland.com/

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  17. Wow, just wow. You know I support you Deb. That's all I'm going to say because I don't like to get caught up in blog debates - but I feel your pain and understand how discouraging a comment like that can be. They just don't understand. Hang in there. We're in it together!!

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  18. I just can't stand people who acts negative in such situations like this. Maybe he or she had a very severe case of Fibro but he or she should be sensitive enough not to leave a comment like that.

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  19. i love how this person is anonymous. seriously just say eff off lol

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  20. the Anonymous comments were quite harsh.
    I was diagnosed with the condition about 2 years ago and had led a really active life and started to feel pains, it can be upsetting when someone doesn't understand or consider your feelings. I like your title of Fibromite, it made me chuckle.
    We all need to keep positive and i know the feeling when something familiar is changed it can really throw you. I thought I was going crazy until I realised I must be getting fibro fog. Hope your job goes well and keep the blogs coming :)

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  21. Hi there everyone! I also have fibro and just wish people could understand what we go through. Im 33yrs old with 4 kids and used to be very active and never complained. Till today most of my friends don't even know that I have it. I don't tell people because they either don't understand it or they just think Im putting on! After my doctor told me a week ago that I now can't even do the part-time work I was doing and that I mustn't even try to make extra money for at least the nest 6months (because the emotional and physical stress) I decided to start a blog! At least this way I get to communicate to people who understand exactly how I feel! Please go see my blog too. I really feel the need to talk to fellow Fibrosites! Great comments btw!

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  22. I do sympathise with all Fibro sufferers, and I am really sorry that many of you are still suffering. I have been helping people to resolve their Fibro problems for many years (13 in all).

    Please, do yourself a favour and check out my FB site, https://www.facebook.com/phil.watson.733/photos, or by all means email me philipwatson170@btinternet.com, for information on how I can help.

    Please do not dismiss this as anything other than a genuine offer to all who are suffering this nightmare. My customers and their results will speak volumes, many of them will gladly speak to anyone else about what we have done for them.

    kind regards

    Phil Watson

    Changing Lives

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  23. Hi again, sorry I meant to add something about fibro, and our experience with what we have seen from sufferers of this issues over the years.

    The most common things that have happened to Fibro sufferers are 1) viral infection (Glandular Fever being the most common) 2) stressfull events (traumas, car crashes, even studying for a degree for one of our customers was enough to finally trigger it. 3) anything that produces stress.

    Therefore the chemical effects of all these events is a massive production of adrenalin and cortisol (stress hormones).

    This affects the body pH rapidly (lowers body pH by the massive production of lactic acid). This is why our treatment is so effective, as it raises blood and cell pH, including muscles by a complex set of chemistry called 'buffering'. It does this rapidly, hence why we get such fast and dramatic results.

    Sorry should have mentioned that before.

    xx
    Phil

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  24. Basically, this: http://jrheum.org/content/30/8/1666.full.pdf+html

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    1. And as for the commentor noting my anonymity, that's because I can't be bothered to make an account. My name is Pippa Ryan. I have literally no idea why you think me not leaving my name is relevant in any way.

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  25. Fibromyalgia is a chronic condition affecting mainly females yet men and children can also be affected by this illness.
    Fibromyalgia Symptoms are characterized by widespread pain affecting all four quadrants of the body.

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  26. Just had to share this with somebody. My grown step-children are "know-it-alls", seems to run in the family but I love them anyway. On two separate occasions, here is their "advice" for helping my FM. My stepson said I should get a massage ( I stopped massage long ago because it would make me sore for 2 days afterward.) My stepdaughter told me to exercise (some people think exercise is the answer to everything! I wish it were.)

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  27. How nice to see a blog about fellow sufferers. I too enjoy writing as you do. This winter is the worst one I remember for pain, I finally decided to take Cymbalta as the pain was too intense and too long already. I am having trouble standing, sitting or walking, very hard when one has pets, has to shop. We are retired thank goodness, I would not have the energy for kids anymore. I had four. I "think" my hysterectomy triggered my FM but then I am only guessing. Cynthia

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  28. I understand what the person was trying to say with the anonymous comment. There have been times when I have been looking for help to deal with fibro and gone to a forum or blog and ended up feeling worse. Some people let the illness taint every part of them and reading them whine and carry is not comforting to me personally. Some may find it cathartic to both post and read these, I am just not one of them. That said I did NOT feel your comment about adjustment was like that. As I have learned to live with fibro I have made many similar comments. Usually in an exasperated but joking manner. Fibromites have a terrible time adjusting to change of any kind. Physical change is an obvious one, but I get annoyed every time my favorite webpages change. Mostly because if I'm in a flare I can't think straight anyway and its added frustration!

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  29. http://www.hyperantivirus.com/?id=gkEYf1AAMdAfYfEx

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