Background Check
Hi! (very original way to start but I really do have to introduce myself first)
(I have never blogged, followed a blog, or commented on a blog before so please bear with me as I learn the necessary tools)
My name is Simone. I am single, live alone and I have fibromyalgia. I was 40 before I heard about fibromyalgia.
Previously, I had worked in hotels, on cruise ships and in casinos.
Me – prior to breakdown/depression
Then I spent 6 years working (in the ‘real’ world) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.
I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life preserver – and definitely no photos from that time!)
With the help of my family, drugs and counselling (& some photoshopping for wrinkles) – graduation!
For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!
Unlike many, I have NOT learned to manage this condition so I am not working and I spend alot of time on my couch (AND not letting anyone take any photos of me!)
So I’ve decided to share this time with YOU (who may be a real person or may just be the ‘ether’).
I used to be a lawyer.
I used to be a student.
I used to be a croupier.
I used to have boundless energy.
I could do anything…
I CAN DO ANYTHING
Fibromyalgia has stolen my old life -
I’m fighting to get it back!
hi im suffering from all of these symptoms and not sure if its fibromyalgia or m.e i also suffer from ostiarthertis which iv had for many years im trying to learn to live with my conditions and take one day at a time.
I don’t know if you would call it “coping” as much as I call it managing. I am a Hair Stylist with Fibromyalgia, diagnosed in 97 after 4 years of tests and many doctors. I am single and work, because I have to, but luckily I can set my own schedule and I have very understanding clients. When I am off, I am TOTALLY OFF. I don’t take calls, they go to message. I need those days to recover, so I can make it through work days. I do not take the drugs, because I was tired of cocktails and I don’t want to be one of the statistics later that needs a lawyer for what the drugs did to me. Hope you have more good days. Gentle Hugs. Deb
I much like you have not yet learned to “COPE”. I am also 40 yrs old and just got diagnosed about 2 months ago. I have had symptoms for several years. I believe due to other medical problems it stayed low key, as I was on many different meds. First for migraines, back injury and last year a shattered elbow. Then I started falling down a lot, so I am now afraid to leave my house. So far I have tried 3 different meds. that have not helped, either allergies or they made symptoms worse. Finding your site for me was great. Because everything is not shiny and bright, so let’s not sugar coat it. THIS SUCKS!!!! The one good thing I have is a wonderful and caring husband. Thank you for the blog and a place to share. Take care Sara
I am so glad to see someone else say that they have not learned to manage this..me either…and I hate hearing ppl going on about do this do that..come on…it doesnt help all of us and we all know it. Thanks for being like me…helps me feel better.
Well Im 45 years old. I was officially diagnosed in 2006 but had problems way before that and I was always told it was in my head and not to worry about it. I have to say it has taken a toll on me and its so hard not to work a fulltime or partime job like I use to. It is so depressing having this as we all know we have good days and we have those really really bad days. Alot of people look at me and say you look fine why dont you work or why dont you get a life. Unfortuntely its hard to explain to people but I have great family support to that is a plus and my husband is understanding it more and my kids as well. Lord knows its hard enough to deal with this. We all have good days and our really really bad days. It has been hard adjusting to this not working thing and people judging me because I can no longer work. Even the simple things are so hard to do. I keep pushing myself and excercising and all the things my pain dr says to do regardless of how bad it hurts. On my good days I tend to over do it and then I suffer for it for a couple of days and then their are days just lay on the couch cant move or do anything at all. I sure hope they can find a cure for this. Until then we need to keep spreading the word. I belong to a couple of internet support groups and that helps to vent to others like us. I have made a couple of penpals so that is nice. Well I hope we can all keep spreading the word and people will listen to us more. Mary
So the last post I made was taken down for what reason I do not know???? This information will change lives–this actually works to eliminate the pain and brain fog of fibro–I have been eating this food since 2000 and would never be without it. I don’t want to go back to the pain-place I came from!!…..I have fibro and have found a “food” that is helping me eliminate the brain fog, and keep the pain at bay. It is called Sunrider and you can check it out at Sunrider.com. It is an amazing herbal food that are recipes handed down over 5000 years from one generation to the next. It is a nourish, balance, and cleanse system that actually will make you feel almost normal again….This food is all organic, grown in an area in China, shipped over to the states, and processed under pharmaceutical grade conditions in Torrence CA. Dr. Tai Fu Chen is the man who has these recipes and he is helping thousands of people in over 26 countries. If you want further information about this product, go to Sunrider.com and check it out. If you want to speak with me personally, call me @ 510-364-2943. My name is Phyllis Wilson and this product is life changing. This product is real…..If you are sick and tired of being sick and tired, check it out!!
Hi Phyllis,
I remember reading your comment (didn’t I say something about being careful with handing out your phone number? Wasn’t it that post?).
I didn’t take it down – so I’m not sure where it went.
Glad you found something that is working for you.
I am 65 years old and have had Fibro for about 39 years now. I also have many other chronic conditions causing chronic pain 24/7. I have been reading the posts here and I see the word coping used a lot and I am not sure after half of my life span there is a true way to cope with this horrific illness and pain. I find that I have been able to find a balance. I have ;earned after years of working full time married with 4 kids and just trying to live life I have to set my mind that I can only do one thing at a time. When I was working on work days I just worked and of course fed the family but learned fast and healthy ways to do so. On chore days I did just one or two of my most important chores and saved the rest for another day. Shopping only one or maybe two stores a day and nothing else. It is a hard way to live but when we over do we are sunk and coping goes out the window.
I’ve been thinking about what you have said about coping. It actually made me look up the word in the dictionary:
cope:Deal effectively with something difficult.
So, I guess that I’m still learning to cope but, you seem to have worked out how to deal with your FM in the best way for you. i would call that COPING!
I too battled through the severe depression was so determined this was not going to beat me I am very strong willed also but there were times and sometimes still are that I think can’t do this anymore but I get up and keep on fighting have a lot of living to do yet I may be doing it slowly and painfully but do it I will
How many of us had depression first and then Fibro? I had a disconnection or breakdown if you like, and fought my way through it. I had a 6 year bout with depression and was on a medication for it and then I stopped taking the meds because I wanted to feel my emotions again and then I felt a lot more then just emotions. I felt pain and exhaustion and would spend days at a time in bed but not because of depression but because of exhaustion. I had reached a place in my life of peace and happiness after many years of hell, only to be hit with this horrible condition. I have been off work now for nine months and struggling with the insurance company and the time limits they have imposed on me. 6 months is considered enough for long term disability and now I am supposed to be all better. I sometimes worry that there will never be enough time in this life for me to be all better again. I try not to stress about it because that makes things worse. I worry about the burden on my family. I worry about my husband who is working long hours just to help me financially. I have a good day and think I should just force myself to get back to work and deal with it but then the next day I am in so much pain and suffering I realize that I can not just will or force myself no matter how hard I try. The pain is manageable as long as I am not doing anything at all except sitting around most of the time. Unfortunately this doing nothing leads to even more exhaustion because I am not active. I understand the thought that I need to keep active and work through the pain in order to have more energy but sometimes the pain is not worth the gain and it starts all over again. I have no answers, I am just shifting between acceptance and denial and guilt and fear. I have never in my life come across anything like this. I am a person who has always just fixed things. I have always met a challenge head on and battled it out but this is something that I can not fight. I spent 6 months of my energy trying to fix and cure myself and it left me spinning my wheels going no where but back to the couch and back to the counsellor. How do I explain any of this to another person when i can not fully grasp it myself. I look healthy enough. I usually wear a smile and I am not one to complain because I have spent my life as a care giver and it is against my nature to put any worry or burden or negativity on my loved ones. i am blessed with loving caring support in my life but even with all that I am still going through the stages of grief and loss of my life. I am either angry or in denial or sad most of the time. My anger fuels me to push to hard and my denial allows my mind to tell my body it can do things that are no longer possible and only after I try and fail yet again does my body then scream at my mind that I am a liar. The sadness then comes and depression and grief again. It is a cycle that repeats its self often. I understand I am only nine months into the discovery of this part of my life’s journey and I have a long way to go to enlightenment and hopefully peace and serenity along with coping. But as long as I am forced to fight insurance company;s who only care about money and as long as I am stressing over the unknown in my future I will continue to repeat this cycle because there is no way out for today. Time is the only thing that is going to change things for me now. Time to heal, time to become financially stable, time to learn to cope, time to allow my family to learn and accept my limitations and time to find things that will bring me joy and hope. Most importantly, time for the world to become educated and accepting, and time for a cure.
Hi Cheryl, we all take different periods of time to adjust to the loss of ourselves. Have a look at this post: https://www.facebook.com/photo.php?fbid=498887993461623&set=a.494818290535260.129090.402121443138279&type=3&theater, although it sounds like you know that part – but we can’t stop fighting because it is us that will force some-one to find a cure (or, at least, better pain management)!
I think I may have to “steal” the list under your picture.
Here’s what it would look like if it was mine.
I used to be a Paralegal.
I used to be a student.
I used to be an Executive Secretary.
I used to have boundless energy.
I could do anything…
I CAN DO ANYTHING
Fibromyalgia has stolen my old life -I’m fighting to get it back!
I went back to school just before my 50th birthday to become a paralegal. I had full scholarship but I had to go full time to get it. I couldn’t afford to quit work so I worked 40 hours a week and then took a full load at school. I went to school 3 or 4 nights a week and took at least one if not 2 on line courses.
In May 2008, I graduated Magna Cum Laude with a degree in Paralegal Studies. Even at my age (52) people were encouraging me to apply to law school. I transferred to another department at work and began writing contracts. By November 2008, I had begun to forget things. As my memory got worse, my pain got worse too. I got to the point that I could be taught how to do a new task on Monday but my Wednesday not only did I not remember how to do it, I didn’t remember being taught to do it. After missing lot’s of work and being out 3 or the 4 weeks of March and the same for April, I couldn’t do it anymore. May 1 I walked away from my job. It was two weeks past my 1 year anniversary as a paralegal.
Some days I feel like I’m coping and other days, there’s no way I’m coping in the least. To say I hate this stuff is an understatement. I look forward to reading your blog so that maybe we can learn to cope together.
Have been going through a flare or will say several flare ups.I am a single parent with two children at home still.They don’t understand a lot about what I’m going through.Was diagnosed finally about 4 months ago. I would appreciate any info or any suggestions oncoping. I work retail as a cashier and on my feet all day.Hurt terrible by the time I get home. By then my day is done..wish they could find a cure..soft hugs to all..
One of the (unhelpful) things you will find is that what works for one person does not necessarily work for everyone, so all I can really suggest is you read a number of blogs and join some Facebook sites so you can hear about what others are doing – after some experimentation, you may find exactly what you need.
Don’t get discouraged if you don’t find what you need immediately – it can take some time. but, then again, you may be really lucky!
I have tried to follow other blogs and FB groups, but I found it hard to keep up. I work full time as a grain accountant at a coop, which takes pretty much all my energy for the day. I am online during my downtime at work, so I can catch up during that time, which lately has been a lot. I get very bored if I don’t have anything to do at work. I HATE THAT. Keep me busy or let me go home. Of course, that isn’t an option and I can’t afford that anyway.
I’ve been dealing with this stupid disease/condition for about five years now. They’ve stacked RA and neuropathy on top of it. My body has become my enemy. There are days I would like it all to be over with. Coping?!? Not really, just barely living.
I relate all too well. It’s so hard. I find myself thinking I don’t mind if I die.
I never studied to be a lawyer but we share the same passion with this fight. I wanted to start a non-profit org to support FMS patients with physical, emotional and educational support. So yesterday I decided to make a FB page to begin a healthier eating quest. This is my last ditch effort at being healthier. I say healthier because I know from long standing history that nothing seems to cure it. But I just wanted to drop in, say Hi, and let you know I love your page, your writing and your humour. Keep up the good work. And many blessings to you
Good luck with your page. Enjoy it! And thank you for taking the time to leave me your comments – I always LOVE good feedback!
Thank you. Love your page.
Thanks for this. I’m not coping yet either.
omg it’s like looking in a mirror ( well you are far prettier than me and I was never a lawyer, but your FM life…) you even have the same name as me, and I also love purple.
I am sitiing wrapped in an electric blanket in so much pain I cannot do any of my long list of things to do. Looking at fibro websites in desperation. Not coping.
Seriously impressed by the website ( I really struggle to keep up with mine) and your positivity. <3
You impress me, girl…. You say studying was very important to you, and you turned the fibro problem into a study as well, you know, by looking for new info and sharing it with us, it seems to me you made yourself a kind of teacher/ student/ supportline, and actually it’s exactly what you’re doing! your texts and shares are a real support to me, in the way I find often info I didn’t know about, so I learn a lot from you, and in the way it’s a relief every morning to realize I’m not alone …
IN short, you turned your disability into a sort of strength, maybe it doesn’t feel like this for you but believe me, it does for me!
so Thank you…
I discovered I had Fibro in 1987. Fatague, headaches, & everything else that has been mentioned. I’m so glad you started this blog, it has made such a difference knowing I’m not the only one with Fibromyalgia. It has helped a lot knowing all the other things that go with Fibro. Thank you for starting this Blog
I cried when I read your words – ‘ you are not alone in this’. It’s easy to feel that way sitting on my couch in pain, depressed & so very tired. Thank you for this site. I’m going to enjoy reading the rest. Take care of you. You’re not alone
Don’t tell me you’re actually going to start at the beginning and work your way through? That could be excruciating and very tiring!
I’ll see what happens
my attention span is on par with a goldfish these days. Little by little is my motto.
College saved me from my major depression. My advisor and collegues knew of my situation which enhanced my Major depression. It was all the support and learning that kepr me going, like you! Best to you! Peace, Roxana
Hi Roxana,
I think that’s why I continue to research and write here on my blog – the support and learning that I receive from writing articles and (hopefully) the support and learning you get from reading them keeps us going.
Hey Simone! Jenn here from FibroFighterz! I just wanted to let you know that we’ve included your awesome blog in our “Other Blogs We Love!” page on FighterZine, our Fibromyalgia e-zine!
Thanks Jenn. I’m subscribed (I think) and waiting to see it!
Hi! This is for Simone and anyone else reading the comments. I’m glad to know that I’m not alone in this, and I hope you all remember that you aren’t alone either. I’m only 22 y/o (diagnosed a little over 1 year ago), so I feel very trapped by this illness. I’m an ambitious full-time college student and part-time volunteer researcher who will be attending graduate school on a fellowship in August, and my only wish is that I can handle this illness long enough to get my graduate degree. I do not want to see my life melt while I’m so young, so I put a lot of effort into “managing” my health.
I know we are all helped by different things. Regular medicine does me little to no good. So I currently spend a lot of time doing biofeedback, deep breathing, and meditation. I have several heating pads and blankets at my disposal at all times, and I stretch every chance I get. I always drink a lot of water and try to eat as healthy as possible. I avoid any foods that cause me to flare up (in my case, aspartame and MSG). I also exercise, although it is the absolute hardest thing for me to do. Research shows that it can help, so I just do what I can.
My personal tools don’t necessarily “fix” anything, but they make the difference between me going to class and me laying in bed all day. Of course, sometimes I have no choice but to lay in bed (during flare-ups). On those days, I remind myself that there’s always tomorrow. Acceptance and patience go a long way.
Peace and gentle hugs to you all!
I’m sorry. I forgot to mention the whole point of my post: Don’t give up, and always be willing to try new ideas! It will pay off. Keep up the spirit!
You’ll do it – just work one day at a time…and we want to see graduation photos!
Also, would you be interested in writing an article for my emag on biofeedback? I’d love to know more about it, as I’m sure some others would too. Submissions for the next issue are due Feb 1st (if that’s too soon, we can put it in the issue after that). Let me know by emailing me at fibromodem@bigpond.com
Pingback: Chatterbox « fibromodem
Pingback: The First One « fibromodem