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My Battle with Chronic Fatigue

Ranked #20,632 in Healthy Living, #304,759 overall

Every day is a fight

In March 2009, I realized that I wasn't becoming refreshed after rest. I kept waiting for that weekend where I would just relax and then feel better... but feeling better never came.

It is currently Nov 2010, and I am worse than I was in March '09, but around the same as I as in Nov '09. Having a stabilized chronic condition is a mixed blessing, I'm not getting any worse, but is there any hope for getting better? In this lens, I plan to share my experiences and struggles with accepting that I suffer from chronic fatigue. I hope that sharing my experiences will serve two purposes: 1) To help others who may be in the same situation and 2) To help me continue to fight and accept my condition.

This is a personal lens. Every photo in this lens has some personal significance, something that is positive, happy and uplifting (Such as the image of my friends' sleepy puppy, Pita).

The most common response:

"Oh yeah, I'm tired all the time, too."

Spoon Theory

But you don't look sick!

This is the story of how the author describes living with a chronic condition, Lupus, to a friend. The spoon theory illustrated can be applied to any chronic condition, whether there is pain or not. My mom shared this with me, and I feel that it applies:
Spoon Theory
"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions."

I love holidays, and decorating my home with a theme. 

Do others understand me?

A huge component of the struggle

When I try to explain my disability to someone, I frequently hear in reply, "I'm tired all the time, too." I think the spoon theory story is a wonderful description of how it feels, but I figured that I would take a crack at it myself:

Think about a really hard day at your job, and how exhausted you feel when you get home. This is how I feel in the morning after I wake up. Sometimes I have so much trouble thinking that I am incapable of making a decision.

Communication can be a struggle. When I am completely drained, I feel as though it is apparent to everyone around me. But my symptoms don't have much of an external manifestation. Because fatigue is something that everyone feels, and often with some frequency, it is hard for someone to comprehend what it means to have chronic fatigue syndrome.

“The healthy have the luxury of a life without choices, a gift most people take for granted.”

NHM #7 Mittens

Knitting and blogging about knitting elevate my spirit. 

Pacing Myself

I may be okay today, but if I do this then I won't be tomorrow

The hardest thing for me to learn was to not overexert myself on days were I was feeling good. If there is a concert I want to go to on Sat afternoon, then I won't go to a bar on Friday night even if I'm having a "low" fatigue day.

I am getting better at shutting off my brain. If I can let myself exist, go with the flow, and not think about how tired I am, I last much longer. This does sound strange, but I look "normal". Decision making is difficult, as is multitasking. I am learning to relinquish control.

For example, at New Years 2010 we had a 3 day retreat in a cabin, with many friends who were visiting. I only stayed up late for new Year's eve itself, and the rest of the time went to bed early. I seemed to fair okay during the weekend. As soon as I got home, I went to bed and slept through the night, even though it was only 4pm. I was so drained that I was unable to do anything for days. But the people who see me don't see the consequences.

Balance

Take it one day at a time, but try to budget for tomorrow.

Humuhumunukunukuapua'a in Maui

Snorkeling on the last trip where I was tired for reasons I could understand. 

What do you do...

...when every test result is negative? Yes, it's great that you don't have anything bad.... but then what is making me sick?

You can call me Dr.

As of Feb 7, 2011!

I am thankful for the support that I have received from my friends and family. I have also been fortunate to receive support from the program administration and adviser in my PhD program. These amazing people found a way for me to finish my degree instead of going on a medical leave of absence. I am so grateful that I did not have to put my greatest academic goal on hold because of chronic fatigue.

On Monday February 7, 2011, I defended my dissertation. I am proud to say that I am now Dr. ChemKnits!

Walking along the Charles River with my fiance. 

Treatment

I am a fighter

My doctors have been unbelievably supportive through this whole process. I joke with them that my treatment is to live a frivolous, active lifestyle; avoiding stress and anxiety which can make fatigue worse. I try to do some kind of physical activity each day, even if it is just 10 min of aerobics in my apartment. I am not going to stop living my life because I am sick.

The greatest compliment I've received from my doctors is that they are impressed by how hard I am fighting this. It is nice to be reassured that you are doing the right things to have a happy, "healthy" life.

My Blessings:

Chronic Fatigue Syndrome is not life threatening

I am not in any physical pain

I have loving, supportive friends and family

I have a fantastic doctor who has never questioned me

I'm not alone

this is not only my struggle

My EngagementLike any medical struggle, the people around me are affected by my decrease in health. My fiance has been by my side through this whole process. He chose to move in with me after I was already sick. He holds my hand when I cry. He does silly little things to make me smile, laugh and let go of the frustration. He has NEVER questioned whether this is real. And when I am upset about what I cannot do, he reminds me that he isn't going anywhere. I don't tell him enough how grateful I am to have his love and support. Less and less do I think about what I have lost due to fatigue, and more about the wonderful things that are about to happen in our future.

Knowing that someone has chosen to be a part of this battle makes me feel stronger, and drive to fight harder. Every day his presence reminds me that I am not alone.

The Middle

because the end of the story isn't written

11.5.2010: Thank you for taking the time to read my story. I want to add that I am a very happy, enthusiastic person, and that I have many things in my life that make me happy. Each month that goes by, I am getting better at accepting chronic fatigue as part of my life, and am therefore feeling less frustrated.

11:9:2010: I appreciate all of kind words you've left for me on this lens. My doctors are re-running some blood tests we ran last December... there is a chance we can expand on our hypothesis that I have a lingering viral infection, but a negative result to this test won't negate our hypothesis.

The Future

It is hard to plan for the future when you don't know what your capabilities will be. At the same time, keeping hope alive for improvement is important. I may not get better, and I may have to change what some of my dreams are... but I still have dreams and new hopes.

chemknitsblog predicts:

Wherever this disease takes me, I will be able to find fullfillment and joy.

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Share your own battle

Any comments and support are appreciated.

  • asiliveandbreathe Sep 22, 2011 @ 7:47 am | delete
    So glad you mentioned The Spoon Theory.
    This is an excellent way to explain the condition to people who have no idea what you have to deal with in order to just live your daily life.
    Some people do get pain with CFS, making it even harder to cope.
    To those who feel isolated by this condition, I would recommend checking facebook - where there are some very supportive groups.
    I will add a link to this lens on there.
  • Quickcutters Sep 18, 2011 @ 3:36 am | delete
    I love your lens. I also from chronic fatigue,depresstion, and have fibromyalgia.
    This is all hard to tell friends and family that i don't know if i can plan to be at there fuctions because i may not feel well enough to come. They just don't understand. Now mosy of my small family members don't even call me.
    I have NO support from anyone. Very sad and very hard for me to go through this alone.
  • stephanieelizabeth Sep 9, 2011 @ 3:54 pm | delete
    I have bipolar. Is a chronic disorder? I don't feel tired ALL the time, but somewhere between 11am-4pm I have to have a long sleep otherwise I'll be tired, grumpy and irritable.
  • Craig May 29, 2011 @ 11:06 am | delete
    Thanks for this post. It encouraged me. I have CFS, but I don't think it's as bad as most others. But, you didn't really say how you got it or even suspect how you got it. I know that I got mine from having unprotected sex with a hooker in Vancouver, British Columbia. This area is famous for extreme drug addiction and prostitution.

    Your boyfriend should not have moved in with you. Having pre-marital sex clouds your judgment (and his) about where you are at in your relationship.

    Thanks
  • cloudiosify Mar 5, 2011 @ 10:24 am | delete
    I am still healthy but I guess that one day if I were to be really sick, this lens will inspire me.
  • MagnoliaTree Feb 25, 2011 @ 9:43 am | delete
    I also have Chronic Fatigue (23 years) In the beginning I ran fever and it was obvious I was very sick, but every test came back negative. I did not even have enough energy to walk across the room by myself. I have gotten "well" twice and was able to work a couple of years each time, but the stress was so much that I had to stop and go back on disability. You have expressed my present situation so well! Few people even know I have this illness because they don't see me at the low points! It is so hard to pace yourself on the "good" days! But so necessary or you will end up in bed for a week! I hear you, my sister, and fully understand what the true meaning of "fatigue" actually is. You are not alone.
  • chemknitsblog Mar 9, 2011 @ 3:17 pm | delete
    Thank you for sharing your story. I hope that you find balance, too.
  • thisnathere Feb 20, 2011 @ 11:52 pm | delete
    I often wonder if I have chronic fatigue or if it is simply depression. I've been diagnosed with depression before so that may be it. Some days feel like a battle just to get out of bed and get to moving. It is difficult to explain and I can't really talk to anyone around me unfortunately. I hope you continue to manage your condition well and I also hope it gets better. Thanks for sharing.
  • marketmasterpro Feb 15, 2011 @ 7:45 pm | delete
    I had fibromyalgia. I am healed. I stopped used amino acids, vitamin c, multi vitamins with minerals, essential fatty acids, vitamin a and no gluten. Hope all is well! Thanks for the awareness on this. It is real.
  • tembrooke Feb 12, 2011 @ 11:43 am | delete
    I can totally relate to your struggle. I have depression & anxiety issues, and my Mom has fibromyalgia which I may be developing too -- everyone thinks you look normal and they don't get it when you say you aren't up to doing something. It's very frustrating.
  • Nibbled Feb 10, 2011 @ 9:28 pm | delete
    Thank you for sharing this lens. My mom has a disease that when flared up fatigues her and she battles similar issues... people not understanding why she sighs so heavy and doesn't have the energy or mood to do normal activities. It's not something anyone can see, she looks perfectly normal so people, myself included, struggle with understanding what's going on. When I was still in school I use to get upset and take her unenthusiastic disinterest as a personal issue and not about her health. I know better now.
  • Lady_Gotrocks Feb 10, 2011 @ 8:36 pm | delete
    Really Great Lens. I have Lupus. Not very many people know. I try to live as normally as possible, but some times I just crash. My body with say "Your Done " and I will sleep for days. It's like living in a fog some times.
  • capriliz Feb 9, 2011 @ 7:41 am | delete
    I really admire the way you are handling this issue. Instead of being mad at the world, you continue to move forward and find ways to accomplish your goals. You are a very strong woman. Thanks for sharing this, because I know this is not an area that most people are very understanding about.
  • Ramkitten Jan 25, 2011 @ 11:01 am | delete
    Thank you for sharing this. I learned a lot here. I have a feeling I know someone who struggles with this, even though she's never actually said so.
  • genglo Jan 21, 2011 @ 11:32 am | delete
    I'm sorry you are dealing with this. I have RA, which ncludes incredible pain and fatigue but I often don't "look sick" In the way that people tell you they are tired, too. I get people that say they have arthritis, assuming it's like RA and wondering why I'm disabled. I have faith that we will find the answer for these chronic illnesses in our lifetimes. Your positive attitude and forcing yourself to move your body should help you greatly. Blessed by an angel.
  • pkmcr Jan 19, 2011 @ 1:58 pm | delete
    Thank you for having the courage ot offer such a powerful and informative lens
  • emerald125 Jan 18, 2011 @ 9:20 pm | delete
    A good friend had chronic fatigue and at the time I did not really understand just how terrible things were for her. Well done for sharing your story
  • HorseAndPony Jan 5, 2011 @ 7:44 pm | delete
    I have a very similar story that began many, many years ago. I understand your exhaustion. It is far more than just being tired. At one point I was so bad that I would put my car in park at red lights and wait for someone to beep me awake. I first was diagnosed with extreme chronic fatigue, it progressed to fibromyalgia and then after I thought I had recovered I started having thyroid issues. The thyroid problems went undiagnosed for many years because the symptoms were so similar to my earlier problems. I was told that I would never recover and would most likely just spend my days at home. I refused this answer, stopped going to the doctor for help and after years of research and a huge change of lifestyle I was able to go to college and have a family. I am now doing so amazing that I have started riding and training horses again. I have a bad day here and there but nothing really to write home about. My recovery started with the book Patient Heal Thyself by Jordon Rubin. I think he now has specific books on these health issues. I would say that the two things that caused me the most difficulties (and still do) are food and chemical sensitivities. If you want any additional info about my recovery feel free to contact me. I hope you find your way through this.
  • chemknitsblog Jan 6, 2011 @ 12:21 pm | delete
    I'm glad that you had the personal strength to keep looking for an answer. I have blood tests done every few months, and I still appear to be healthy in every other respect. Of course, I'm waiting on the latest series of a gazillon tests, so who knows, maybe they'll find something!

    Thank you for sharing part of your story.
  • Bookworm25 Jan 5, 2011 @ 2:31 pm | delete
    I think this a wonderful lens and really moved me. After a heart illness three years ago I have been exhausted everyday since. It has improved but every morning I wake up just as tired as when I went to bed.

    I have felt sorry for myself and angry at the world, like you saying I was exhausted people would say I know I get tired, it is frustrating.

    However I have learnt coping strategies and although I would like to say I am mostly positive I have days where I want to rage against the world for it being unfair or just curl up and sleep for a week. I found your lens to be moving and inspiring, I liked the small mantras and the positive outlook on life, I think your family and friends are very lucky to have you. Take care and thank you.
  • chemknitsblog Jan 6, 2011 @ 12:18 pm | delete
    I still have bad days where I want to rage against the world. Writing has helped me a lot, and it has given me an outlet so I feel productive and valuable.

    I wish you the best of health!
  • JustinNapier Jan 5, 2011 @ 11:57 am | delete
    That certainly doesn't sound fun, but I'm glad you've learned to excel anyway. Have you been tested for low thyroid? My mom would simply fall into a permanent sleep if she went without thyroid supplements for too long. I know testosterone can affect energy level too, but mostly in males. It seems like there has to be a chemical reason for this problem that could be fixed with supplements and make your life so much easier.
  • chemknitsblog Jan 5, 2011 @ 12:09 pm | delete
    You would think that there is a chemical reason for the problems... but they haven't found one yet. My thyroid is fine.... They just took a lot of blood to run some other tests... but the hypothesis is still that it is related to some low titer virus.
  • supermom_in_ny Jan 4, 2011 @ 9:54 am | delete
    Wow. I feel like this often too, except I suffer from migraines and sinus headaches 3 times a week. I also have a weak stomach so I have to watch everything I eat. It wouldn't be so bad, except I am a mother to 7 kids-the youngest is autistic...
    The only way I am able to function is because of a lot of prayer. I don't even know how I wake up and make it through the days without acknowledging it's a miracle. I have gone to the doctor repeatedly. He just laughs and tells me it's stress due to my kids. I have to change my doctor because this one doesn't want to bother doing tests. He's the type that loves to write prescriptions and I don't like to take meds unless I absolutely have to. I am already messed up, don't need crazy side effects!

    Thanks for sharing this. Your positive outlook on life is inspiring...
  • chemknitsblog Jan 5, 2011 @ 12:11 pm | delete
    Thank you. I try to have a positive outlook, because I don't want to be frustrated by this forever!

    Having a supportive doctor is one of the best blessings I could have asked for. So far, no medical professional has brushed this aside, and they're all trying to help me get to the root of the issue.
  • PipPipHooray Jan 3, 2011 @ 9:16 pm | delete
    thank you for your honesty and for sharing your story. I admire your truth. thank you.
  • Serenia Dec 31, 2010 @ 5:30 pm | delete
    Well I certainly know how your fiance feels. My DH was diagnosed with Fibromyalgia about 8 years ago and has been on disability ever since. Then 5 years ago he suddenly started sleeping a lot more than he usually did. Now he sleeps most of the day and is up at nights. The problem is that what little sleep he gets is NOT REM sleep. It is not the deep sleep that a body really needs to recover and relax.

    This leaves me to be a "single mom" to our 8 year old son. Our son was born before DH started sleeping all the time. I do get frustrated that the doctors cannot do anything to help. Every blood test or other test they do, shows that there is nothing wrong.
  • chemknitsblog Jan 5, 2011 @ 12:13 pm | delete
    I'm sorry that your family is suffering. Chronic Fatigue and related illnesses affect the people around the patient too, and they deserve just as much support.

    It is frustrating to have every test come back negative... but at the same time I'm thankful that there isn't anything "scary" wrong with me. I hope that you can find a way to help your husband get the deep sleep that he needs. Best of luck to you.
  • asiliveandbreathe Dec 30, 2010 @ 11:32 am | delete
    It is really hard to make people understand that you may look OK, but you're not.
    They cannot see the invisible illnesses and disabilities, or chronic pain, that some of us have to battle daily.
  • rikadopaul Dec 16, 2010 @ 9:19 am | delete
    hey.......... cheers man............. you presented it so beautifully.... really loved your lens.... great job dude..... you will be fine.. dude............................................... :) :) .. hugs.....
  • rikadopaul Dec 16, 2010 @ 9:19 am | delete
    hey.......... cheers man............. you presented it so beautifully.... really loved your lens.... great job dude..... you will be fine.. dude............................................... :) :) .. hugs.....
  • nightbear Dec 15, 2010 @ 7:05 pm | delete
    Thank you for sharing your personal story. It is a very difficult syndrome to deal with and very misunderstood by those that don't have it. You are very brave.
  • chemknitsblog Dec 15, 2010 @ 7:14 pm | delete
    Thank you. :)
  • TamaraKajari Dec 15, 2010 @ 10:51 am | delete
    What a deja vu. My sister has this problem, although she's in the middle of medical testings and waiting for the final diagnose. She's only 22, just started working, but just always tired. When under a stress she's even worse and almost depressed. Basically her mood is an ongoing sinusoid of ups and downs. However, support of friends and family is the best therapy. Thank you for this very important and sharing lens:-)
  • chemknitsblog Dec 15, 2010 @ 7:13 pm | delete
    It really sucks to have a disease that is a diagnosis by exclusion... but the upside to that is that while you life is majorly affected, it won't kill you. I wish your sister all of the best.
  • Momsbusy247 Dec 14, 2010 @ 10:25 pm | delete
    Wow, thank you for sharing your experience, I am sure that when others read about your experience they will realize they are not alone and maybe they will find solace in your words.
  • rockycha Dec 14, 2010 @ 3:01 pm | delete
    Great lens! Big Thumbs up! so sorry to hear that you're struggling too, I know the battle well - it can get better - I still call myself 50% cured, which means that I'm no longer bed-ridden. My prayers are with you. Also lensrolled to my Is c.f. killing me lens.
  • chemknitsblog Dec 15, 2010 @ 7:14 pm | delete
    It is nice to believe that it will improve :)
  • termit_bronx Dec 14, 2010 @ 7:38 am | delete
    This was my problem too. I had 2 trainings a day and I was tired all the time. Even if I rested all day, it didn't help.l
  • jptanabe Dec 13, 2010 @ 11:57 am | delete
    Wonderful lens! Thank you for sharing your personal struggles and victories - love everything you are achieving!
  • JewelRiver Dec 12, 2010 @ 9:14 pm | delete
    You are so brave!
  • AllyVuitton Dec 11, 2010 @ 12:59 pm | delete
    I love people like you, who are willing to let others feel your personal issue!
  • aesta1 Dec 7, 2010 @ 7:10 pm | delete
    There was a time in my life when I felt this, too. I was always tired but that changed. Maybe with age. I can't really pinpoint when but I just woke up one day and just felt well. Maybe when I finished my dissertation. I did seriously some self-development courses. And those years were long years and I was well, doing very well in my responsibilities. Am happy it was over. I hope the best for you, too. And good luck in your dissertation.
  • AddaptAbilities Dec 7, 2010 @ 4:52 pm | delete
    I can totally relate to looking well while being very, very sick. I have severe allergies and asthma, depression and anxiety disorder, and ADD which went undiagnosed until I was in college. On the good days, the smallest tasks in life are a major challenge. On the bad days, they're too overwhelming to manage. Congratulations on surrounding yourself with people who know your struggles are real, and who show their love by supporting you in that struggle.
  • hotbrain Dec 5, 2010 @ 7:24 pm | delete
    I am very happy to be bless this terrific lens!
  • ajgodinho Dec 2, 2010 @ 7:27 pm | delete
    Wow, you're right, we take out health for granted, it's so easy to do, eh? I'm so impressed by all that you're doing, you surely are a fighter ~ I mean, look at the lenses you've made so far in such a short time and so much more that you're working on! Wishing you the best as you look to put this behind you and live a healthy life! **Blessed by a Squid-Angel**
  • chemknitsblog Dec 2, 2010 @ 8:32 pm | delete
    Thank you so much. I am so healthy in so many other ways that I often feel strange considering myself disabled... but the truth of the matter is that I am not capable of doing things that I used to be able to. Multitasking in any form is something that I can no longer do, so now it's all about learning what I can do and what I can accomplish. I believe that I will get better some day, but if I don't, I have many things to look forward to and new goals that can fit in with my energy level.
  • Tipi Dec 2, 2010 @ 7:16 pm | delete
    Doctor, ...ur...wow, that's is some accomplishment with the battle of chronic fatigue. Congratulations on winning this fight, its a good fight. Thank you for sharing this and keeping us posted on things. You will be in my prayers tonight and in my warmest thoughts from now on. ~ You knitting is awesome! ~ Sleep with the Angels!
  • chemknitsblog Dec 2, 2010 @ 8:30 pm | delete
    Thank you for your kind comment. I am so fortunate to have a committee who believes in what I can accomplish when I'm not sick. Once I've finished my degree, I can focus on getting better for a while (which I'm sure will involve more time here on Squidoo!)
  • Cheryl57 Dec 1, 2010 @ 1:24 am | delete
    Everyone who has a chronic illness should direct their family and friends to this lens. I have Lupus, so I can really identify with the challenges of CFS. I no longer take one day at a time, but more like one hour at a time!
  • chemknitsblog Dec 1, 2010 @ 5:36 am | delete
    Thank you for the comment, Cheryl. I hope that you have many more good hours coming up.
  • bsblmike2 Nov 30, 2010 @ 5:08 pm | delete
    good lens. appeals to pathos
  • GeoffSteen Nov 30, 2010 @ 11:09 am | delete
    Your lens is beautifully written. A close relative has suffered from CFS. It was never proven by the medical profession, but we too think that a viral infection lurked behind the condition. I'm happy to say that she has now recovered. It's good that your doctors are supportive; we found that it is all too easy for them to say that it is pyschosomatic in origin.
  • chemknitsblog Dec 2, 2010 @ 8:28 pm | delete
    I'm glad to hear that you relative got better, it is always nice to think that there is a light at the end of the tunnel. Thankfully, any doubters I've encountered are not people I"m close to, and the ones I am close to stick up for me :)
  • Cari_Kay Nov 29, 2010 @ 5:03 pm | delete
    I have been struggling with severe anemia since my daughter was born. I have total empathy.
  • -jhr Nov 19, 2010 @ 7:42 pm | delete
    Hang in there!
  • Nov 19, 2010 @ 3:55 am | delete
    Chronic Fatigue Syndrome is horrible in so many ways Just keep remembering you're not alone. I know it's not much to offer, but I hope it helps in some way.
  • chemknitsblog Nov 19, 2010 @ 7:59 am | delete
    It absolutely helps! Thank you so much for your kind words.
  • poutine Nov 18, 2010 @ 5:02 pm | delete
    Hope you find some relief.
  • howtocurecancer Nov 12, 2010 @ 12:13 pm | delete
    I know how hard it can be day by day. My mom is a breast cancer survivor, not yet a thyroid cancer survivor. God will help you, keep your faith. This lens is blessed by a SquidAngel.
  • chemknitsblog Nov 12, 2010 @ 12:15 pm | delete
    Thank you so much for the blessing and kind words. I send my best to your mother, and hopes that she can beat her cancer.
  • Timewarp Nov 10, 2010 @ 10:10 am | delete
    Sounds very frustrating, good luck with your recovery.
  • chemknitsblog Nov 10, 2010 @ 10:12 am | delete
    Thank you. It is frustrating, so having a list of things and activities that make me happy help a lot. Writing this lens has been a good outlet for that frustration.
  • CDT Nov 9, 2010 @ 5:11 pm | delete
    I think your output (and the quality of that output) here at Squidoo is incredible given that you've been here for so little time - and then to find this lens and read about your battle with Chronic Fatigue Syndrome it's even more amazing! I remember having Glandular Fever a few years back and even after I'd got over the worst of it, having months and months of feeling more tired than I had previously realised it was possible to feel, so I can empathise with you a bit (even if it's not really the same)! Best wishes & I look forward to reading more of your lenses :)
  • chemknitsblog Nov 10, 2010 @ 10:11 am | delete
    Thank you so much. I love that I have found an outlet where I can share my hobbies, interests and personal stories.
  • LisaAuch Nov 8, 2010 @ 1:36 am | delete
    Rebecca: you did a great job on this, the most important thing is as you say, explaining to the family, sometimes I could not even lift my head, and I had slep for (I kid you not) 2 days! the mental battle, that you Do have a disability is the hardest, and to get you family to understand is so hard. Only when my husband attended a consultation, did he seem to fully understand, now he just knows...I also suffer Chronic pain which is a vicious circle sometimes) but i try to pace, but you end up frustrated, and sometimes angry at the wrong people, meeting other people who are also in the same boat has helped me greatly, and i like you have found other ways to channel my frustration... I wish you well on your journey.
    keep us updated on how you are doing, from one sufferer to another.
  • chemknitsblog Nov 8, 2010 @ 7:34 am | delete
    Lisa, Thank you so much for this comment! I have family members who have been suffering through chronic pain for years, and I know that it comes with many of the same symptoms that I am experiencing. I am in awe of people who can live through so much physical pain and the inner strength they have to keep fighting. I wish you well in your fight, too.
  • hotbrain Nov 7, 2010 @ 8:48 pm | delete
    This was a helpful page. It should would be nice to find a medical explanation and treatment! I don't have chronic fatigue, but I have bipolar disorder. Although it's not the same, the conditions share the same unpredictable energy levels. I'm familiar with the spoon therapy - it's a good one!
  • chemknitsblog Nov 8, 2010 @ 7:31 am | delete
    Thank you for your comments! I plan to add more about the diagnosis story in the future. The biggest problem with Chronic Fatigue Syndrome is that there isn't a series of medical tests that prove you have it, it is a diagnosis by exclusion. (I present with these symptoms that cannot be explained by any other test.) Because of this, the treatments are very individualized. I absolutely intend to extend these areas.
  • the777group Nov 7, 2010 @ 4:49 pm | delete
    Since I don't have Chronic Fatigue, I can't relate to this lens at all. However, I have heard so many times that it a syndrome that can ruin people's lives.

    Best of luck!
  • chemknitsblog Nov 8, 2010 @ 7:29 am | delete
    Thank you very much for at least taking the time to read!
  • darciefrench Nov 5, 2010 @ 7:36 pm | delete
    Thank-you so much for sharing your story. I loved what you said about the spoon theory. It's good to raise awareness about how people are actually feeling, vs how they look. For me, I simply could no longer participate out in the world due to energy level variations and retreated into my own world at home. I'm featuring this on November Mental Health Blessings personal stories. Many thanks and much love.
  • chemknitsblog Nov 5, 2010 @ 9:11 pm | delete
    Thank you for this kind comment. I'm planning on eventually sharing this with my friends, once I work up the courage.

    (A funny note, the security word right now is "humorous", oh the little things that make us smile!)
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chemknitsblog

I have a PhD in biochemistry and spend my spare time designing knitting patterns and writing online. I have been blogging as ChemKnits for the past two... more »

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