I'm interested in learning all I can about anything related to Chronic Invisible Illnesses affecting the mind and everyday living. I am myself a Fybromialgic 'warrior' battling with life...
I fight each day with something I cannot understand but have come to accept as a part of me. I have become a warrior and stopped feeling like a victim or a sufferer even though it makes life really difficult I insist on having a life, however large or small depending on the day.
Is this how you feel? And if not, why?
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Mentesanas
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I have to even wonder myself if I really have FM because of its invisibility. Of course, I know I do. My fiancee won't even use the word fibromyalgia. Yesterday I was napping with my head back, suddenly couldn't breathe and sat up with a sharp inhalation. He didn't even look up from his laptop. Was he just so absorbed he didn't hear?
I find Zeb's "It's FIbromation TIme" series really great for us to participate in. Here is a link to the first one:
I did some more googling and found this link to a long discussion but well worth reading in my opinion. Well, OK, I haven't finished it yet. (There is evev controversial discussion over whether the TPT should be a diagnostice tool . . . )
Thanks for that Clare. I find that not even my nearest and dearest get it but I do make a point of being respected as I do make a huge effort to make things work around me and when I say I am not well they know I mean it... even if they can't see it... Take care and warrior on!
Any link with UNUM needing a condition described as psychiatric rather than physical avoiding paying medical insurance blacktrianglecampaign.org/2... may or may not be relevant
All I can say is Holy Cow. No wonder efforts have been stymied. (I won' get on my political soapbox though.) Thanks for sharing those links. They were eye opening. And Emily's story is sad but brave, an inspiration.
I sincerely hope that you are feeling as well as you possibly can be today? I must admit that I have never considered myself either a warrior, a victim or a sufferer? I perceive myself as being sentient and individual. My entire life is holistic and I can only break it down into 4 categories, including family, friends, interests and possessions! These are what hold my mind and my thoughts, and of course, my heart.
Therefore I cannot attach any such labels to myself, and I would caution anyone who does, as many people can become down and depressed about their medical issues. I truly believe that we, as human beings, are at our happiest and most content, when we can simply be ....
I genuinely hope that you can find the answers that you are looking for?
I always feel as well as I feel and don't make a fuss about it. I simply do as much as I can and if I can't... as Whitney Houston sang once 'It's not right but it's ok '
I go with the flow and live in the now and it seems to help and I have no intention on labeling anyone let alone me but right now I do warrior on so that one fits me quite well...for the time being
Thanks for your kind reply. I know exactly where you are coming from and what you mean? We all find people in our lives who will simply not let us be! However, I do not allow them that power over me. Gets me into a few arguments here and there, he! he!
I have a beautiful family who truly understand how I feel and what my pain is like. My wife has Primary Progressive MS and is in a wheelchair, and my grown up children are wonderful about how we are? And constantly offer their help.
Take care an I look forward to bumping into you around the forum.
YAY! Only 11 days to go!! I am seriously considering getting this Dalekanium for Julie's wheelchair! She moaning that I can't so I probably will?
I dont think of myself as a warrior, it would be like trying to fight the wind. It would get you nothing except exhaustion.
But I am not a victim either, I am not just giving in. I always say that I am LIVING with fibro, not that I am suffering from it.
It is about accepting a new life and learning to live with it.
I know it is easier for me than for most, I dont have small children or have to go out to work. But I think that it is something we all strive for. So good luck every one on being able to find the ability and time to be able to pace.
Thanks for that Sue. I think most of us have adopted that attitude and in my very personal opinion I think is the best way. When I talk about being a warrior I don't mean I clench my teeth and go forth.. I mean that I want to still have a life and go out and travel, and have wonderful moments with my loved ones and, and... at a price of course but I will do these things knowing I will have to pace myself after or during the event. It is hard work as you well know and that is why I see myself more as a warrior. And yes, I am a mother, I do have to work so it does change the scene a little. Thanks for your time.
I suppose I'm a warrior. So determined not to give in. I have made as many lifestyle changes as I can to enable as near normal existance . my nearest & dearest now understand that when I say I can't I really mean it. As for others they will never understand it or me so I appear normal to them. Its not worth the effort of trying to bring them on line. I am not mentally able to sit in a chair & switch off there's something inside that won't let me. But I can understand that there are others that do give in. I believe that if you don't use it you'll loose it & I don't want to loose anything. It's not easy but this is my life now no going back. I do have patience issues, like no patience when people take time off work for the littlest thing. Something that I probably have everyday. In some shape or form but then I'm learning that we're not all the same...slowly. X
I can relate to your thoughts very well. I don't want to miss anything but there is a price to pay and I do so willingly as I keeping adding wonderful experiences and the memories that go with them... when I don't have brain fog that is ha ha
I too have been having this battle for 12 years. I get on with things as well as I can even though i have had mote flare ups in the last 6 months. At the same time caring for my partner who has had 1 back up and may yet be having another. But through this I keep going with head down as thats all we can do. My gp wont refer me to pain clinic as they are ignorant to this condition so I give up. Im only 38 so Im not letting it claim me yet. They say women are stubborn, well thats definately me.
Keep at it girl! Life can be tough but we get what we put into it.
Take care and pace yourself when needed and go forth...
When I was first diagnosed I set up a pinterest site with a board for fibro. If it interested me I pinned it.
After a time I got fed up with pins telling you to fight, dont give in. we are tough and not for the life of me could I think of anything worse than fighting it. The only thing you get by fighting it is more pain and worse symptoms all round. I am not saying give in, I am saying to go with the flow. Dont stop doing things that you enjoy just space them out more to give your body a chance to rest.
It is up to us all how we deal with it, for some doing what they always have is worth the pain to others it is better to slow down, having less pain is worth not doing things so often.
I found the pin that I will post. at the time when all you could find was how to fight. This pin said it for me .
I will also post the comment that I made at the time. I would be interested in what others have to say about it.
Psst! Please send the pin, I'm intrigued now... And yes, I too have a Pinterest board like this but I simply won't even pin the 'ra ra' we are strong pins as it is a total contradiction to what we really feel anyway but I also reject the 'we are so very ill we can't do a thing and how awful can this be' sort of message...
I suppose in my case it's more about the attitude you decide to adopt to having any type of ailment, do you want to live the rest of your life in bed or do you want to still experience life as far as you can go? Whatever makes you happy.
I pace myself and sometimes i have no choice in the matter and simply grind my teeth and not do much knowing I will at some point in the week, :), be coherent and strong enough to get on with things.. I do not punish my mind or my body unnecessarily unless I have work to do and then I brace myself knowing I shall have to take the rest of my day off to be able to continue working later on... anyway, I could ramble on so I shall bid you farewell and thank you for your input Sue.
Well said we just learn to live in pain, really enjoy the good days, muttle through flare ups, just try to get as much out of life that's become so limited.
Great Post Sweetheart!!! I've been through a lot in my 52 years. First I've had RLS since I was a small child. Then I was sexually abused at the age of 9 then raped repeatedly at the age of 20. Then while going throughout the court system I lost my grandma and dad. Then I had my daughter which I love to death but a year later had a miscarriage while dealing with my first of many kidney stones. Then I had endometreosis from not getting a D&C and at 30 had to have a hysterectomy. Just went back to work and got Chicken Pox Ugh... Then I hurt my back ruptured disks at work and then in 2004 I was finally diagnosed with Fibromyalgia, after years of wondering why I was always hurting, tired, and sick. Now I'm awaiting results from my blood work as I feel even worse. I've also found out that many health issues comes along with Fibro. Such as inflammation of the eye, or eye's, fungus on the esophagus, IBS from He11. And the list goes on. I always say what don't kill you makes you stronger....but I'm about at my limit. Hope you are well sweetheart and keep soldiering on. xxx Mitzi
Gosh you've been in the wars haven't you darling? By the way I'm older than you so I'll pull rank haha!!
I'm not surprised you're at your limit, so would I but... do what you can do at your own pace and do things that you find rewarding, comforting things that give you as much inner peace as possible, anything from watching TV, to listening to the radio while you tend to a flower in a pot or listening to audio books from the library if your eyesight is not good... there are tons of things one can do and still be part of life even if it is in an indirect way...
By the way I haven't read anything about us having other health issues due to Fybro and would be very interested to hear how you found out as I do research anything I can get hold of on Chronic Invisible Illnesses not accepted or understood by those who are supposed to be supporting us, i.e. The medical world.
I am determined to find ways which do not involve drugs that do not cure but do help us to become drug dependent and walking zombies so any information helps...
We are all having to struggle a bit more than others who don't but then again others may have to struggle with other things, an ailing relative, no work and little money, kids, living alone etc This is life so it's up to each one of us to LIVE it as best as possible.
Thank You So Much Sweetheart!!! I have found the things (health issues) after I get them and google them in relation with Fibro, and wow what do you know they are found to be related. For me, one was inflammation of the eye, another is the fungus the doctor found in my esophagus. Plus the IBS and RLS. I'll let you know if anything else pops up though. I have a folder on my computer and have posts of my Health Block Buddies. That way I can keep in touch with certain people who I message more. Again thanks so much honey, you are a doll. xxx Mitzi
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