I am having a particularly rough time right now. I am in a dark period. Hope is hard to find. I try so hard to beat this illness but I just can’t seem to win. I lay in bed unable to sleep each night and hope and dream about the future. I think of all the things I want to do. I make plans. I am always confident that I will be able to accomplish them. Then I finally drift off to sleep and dream about my life as it was only to wake up to the reality that all that was and all that I dream of is gone.
I really am trying to accept this and fight to live life to the fullest, but I don’t want to accept it. I don’t want to change the way I do things. I don’t want to be limited. I want my life back. I want to be the person I was before. I want to go hiking again. I want to walk and run and work in the garden. I want to take a shower without becoming exhausted. I want to cook and clean and do my own laundry. I want to go to the grocery store.
Spring is coming, or so the calendar says, but I don’t want it to. Spring is the birth of new life. Spring is a beginning. Spring is hope. I always look forward to spring. It is my favorite time of year. The flowers begin to bloom, the air smells fresh and clean, the birds sing, it is just such a beautiful time of renewal. But how can I face another spring from my bed? How can I continue to watch time march on without me? This year spring means one year. It means one year of this hell, one year in bed, one year of relying on others, one year of not being able to take care of myself, one year of sickness, one year of struggle, one year of sadness, one year of pain, one year of watching life go on around me. One year.
I don’t know if I can do this.
14 comments:
I've had CFS since 1989, so I know exactly what you're going through.
I too lived "burning the candle at both ends" for years. I thought I was indestructible. I wasn't. I'm not.
I'll share with you what has worked for me, although I know I'll never be "the same".
1. I take Doxepin, 50 mg nightly. It's a non-therapeutic dose of an anti-depressant. It was prescribed to me because "it sometimes works" to help get more restful sleep. I'm very lucky that it DID help me achieve that.
2. Stress and over-exertion are my two main triggers of my CFS. If you bottle things up inside or take on others' drama, this will negatively affect you (whether you know it or not).
3. Weight gain will sneak up on you. It's easy to do when you're so much less active and eating is one of the only things that feels "normal" and "satisfying" in your life. Even though you can't exercise, at a minimum you should stretch daily. NEVER push yourself, by the time you realize it's "too much", you'll pay for it.
4. Only YOU know your own body. All of your decisions from now on should me "me first", regardless of what others think. You'll find that you will make "sacrifices"; things that will make you feel good (normal), but that come at a price. For example, you might decide to go to dinner and a movie on your anniversary, even though it might cause you to feel worse. ONLY YOU can determine what is worth it and what's not. To manage this illness, you have to develop a selfish streak.
5. Everyone with CFS is different. What works for me, may not work for you. You need to accept that you may very well never be the same. Your attitude should be "I'm going to make the best of my time here on earth", regardless of how hard it is. You're not alone. There are millions of us out there. Don't fall for the BS health supplements, diets, injections, etc. There are A LOT of people that will not understand what you're going through. You'll be surprised and disappointed at how ignorant some people will be about your illness. People who should know you, will be among the non-believers. Don't fight this, you can't change their minds. Move on. Surround yourself with positive and supportive people.
In an odd way, having this horrible illness has made me a better person. I appreciate the small victories and the things I can accomplish. I take nothing for granted. If you look hard enough during this journey, you CAN find the occasional silver lining.
Good luck.
I read your story on the CFIDS monthly newsletter today.
I was struck by two things: I became ill in March 2004, exactly two years before you. Also my reaction on recieving my diagnosis was much like yours. I was very angry and even insulted my doctor telling him CFS really stood for Can't Figure-it-out Syndrome.
You have a wonderfully supportive family as do I and believe me that is a blessing. Hang in there. I know it is hard, especially at first, to accept that you aren't the person you used to be.
Good Luck!
Kristy-my heart goes out to you. I know how challenging this disease is. I was diagnosed three years ago, but I have had CFIDS for much longer than that. Although I am still dealing with it, I have much better days than I used to. The main reason for that is my doctor, Dale Guyer, in Indianapolis. He is an alternative medicine doctor ( a real MD, though.) He is innovative in his treatments and has helped a lot of people with various medical conditions but especially CF. I don't know "blog" rules, so I am unsure if I can post his phone number. However, if you would like to check him out, his website is www.daleguyermd.com. Keep believing.
Bonnie
Kristina
I also just read your story in the email CFIDS monthly newsletter. I am sorry you are struggling so much with this devastating illness. I have been diagnosed for 16 years and I know NOW that pushing and crashing are the worst things I did to myself. It just made my CFIDS worse, so my advice to you is to pace, rest as much as you can, and never give up hope. We can live with acceptance and hope together. Acceptance is not resignation or defeat. It is just what it is...
Renee
Wow! One paragraph really grabbed me. When I read that you were not able to raise your arms and had trouble swallowing and speaking...I could really relate to that! Not to mention the weighted, horrific tiredness. It was difficult to describe. It was, and still sometimes is, terribly frightening.
I was diagnosed 4 years ago, have had a mild, gradual improvement, though I am "sick" for a part of every day. Mornings are best! I think the improvement has been due to my accomodation of the illness...learning to manage it, not actual recovery from it. Treatment has been centered on maintaining a level blood pressure and managing pain and discomfort.
When I was diagnosed, I too, was mad, sad, frustrated. I thought "not me, I'm so active, so upbeat, so...normal." I became sick after a nasty sinus infection which cleared with antibiotics. Physical therapy has helped with neck and head pain from whatever drives this stuff-my doc says autonomic dysfunction, failure to regulate blood pressure, orthostatic hypotension. The failure is there, yes, but, I think something more specific and underlying drives that. I get chills, and feel that I MUST lie down or I will collapse. I sleep for about an hour every day, sometimes more.
Because I haven't been working, I've gone back to school. I've been taking a limited course load for a year, done very well and have applied to nursing school. It's kept me sane and I've enjoyed the challenge and the learning! If accepted, I don't know if I'll be able to handle the physical challenges of nursing school, but I am taking it one step at a time trying not to project too far into the future. The important part is...I'd never have returned to school if I hadn't gotten sick! It's a silver lining!!!
I enjoyed reading your story and others' comments. It is indeed helpful to know that others are suffering with these very specific (not vague!) symptoms and that they, too, are as frustrated as I am at facing this level of disability with so much uncertainty. It's been very life changing (I try to stay away from saying "it has ruined my life").
Staying functional requires discipline or certain "selfishness" as another writer put it, to balance activities.
It is very hard for others to understand the nature of this beast, but fortunately, my immediate family can see how devastating it is. They, unlike people who see me "up and about", understand and accept my ever changing condition. I try to stay focused and involved in school, I am ever hopeful that research will yield benefits, and I try to forgive people who don't "get it." I am not always successful. This is perhaps the second greatest challenge of this illness for me.
I also try to stay physically active; walking seems best and helps me feel more in control. I foolishly try to return to running every now and then. Though the mile seems longer, I can always accomplish the run. I pay dearly with painful headaches and unbelievable weakness and "fatigue" -a word I've come to dislike-it's hardly appropriate to describe the phenomenon- that lasts for days.
This is a cycle that's been hard to break-an example of the challenge of accepting my new reality.
Thank you for giving me this opportunity to type a message. I haven't wanted to spend too much time in the problem, or bogged down in the sadness of it, but THIS has been cathartic. Thanks and good luck to you...to all of us!
Catherine
Hi Kristy,
I also learned about you from the CFIDS newsletter, thank you for talking about this, you are so brave.
I know my CFS could be much worse, I'm always tired, don't sleep at night also, and have chronic UTI's, very painful. I also get major pain in my chest and arms, it used to send me to the hospital in fear I was having a heart attack, I have learned to live with the pain since I don't care to be on drugs all the time, although I do use allot if Asprin and Ibuprofen.
It (CFS) has been hovering around me for many years but made its major attack a few years ago when I had a UTI so bad that kept me in bed all summer until they could find the right antibiotic to kill it. I too get depressed by this illness although I've had depression for some off and on for many years, I don't know if the depression has been related to the CFS all this time of if the CFS was brought on by the depression. The worst part is that my family and friends cant see it and think I just need to make myself do things, I even feel that maybe I'm just crazy or lazy. The worst part is I ' loose ' words, they fall right out of my head, I can laugh at it but it really scares me, when I lost the word for pen or pencils at the vets when I was signing my check I was so humiliated, luckily my daughter knew what I needed and reached over the counter and handed me one.
What really frightens me is I'm a single parent, my youngest is 13 and still needs me, and I just had my first grandbaby 6 months ago, I don't want to be this tired unmotivated person, I want to have a life, enjoy my family, somehow. It seems this has been plaguing me since my late 20's or early 30's. It used to be I had bad days here and there, now its the good days that happen less than the bad
The doctors have been useless, but I have found some help with taking B12 lozenges every day. I function better I think. I'm not sure how much B12 you can safely take, I'm taking 500 mcg and so far so good. I get them at Walmart and have heard you can get them at GMC also. I've tried to eat better and remember to take vitamins, I also have short term memory loss, CFS related?, I just don't know anymore. I was diagnosed by disability with Fibromyalgia, but I belive that its the CFS not the fibro. This is just so frustrating, I used to hope for cancer or something bad but curable, anything to have an answer.
My mother-in-law also has CGS, I remember her, many years, ago having to take a year or two off from work and life, I cleaned her house for her just as my oldest daughter now dose all the cooking for me. She is fully functional now, told her CFS is in remission, so you have brighter times to look forward too, just hand in there through this dark one.
Hang it there and hopefully soon they will find an answer for us.
Much Love, Debi
It was very helpful for me to read your blog as it voices a lot of what i feel about myself all of the time. The feeling that you don't want to be this person you are because of cfs. How you want to be beautiful, positive, active, helpfull, productive, active, inspiring, patient... all of these things seem to diminish because of cfs. I don't know what approach you are taking to get better, but I would say that the first comment on this blog has some great practical advise, many of which I have followed and have dramatically improved my condition. I was bed ridden at my worst, but it was not so severe as yours, I could at least get up to make myself food and take the girls to school. (I am a solo mum... they are 4 and 7, were 2 and 5 when i got cfs) I won't go on about my story, I wanted mainly to say to you that it has helped me to read what you have written.
Also to share what I have done that has helped me recover to a semi-functioning state:
Mild antidepressent, I took Norpress, which is a tricycloid, at 5pm every night for 7 months. It meant that my body got the restorative sleep it wasn't getting because of cfs. Side effects: wicked mood swings, ups and downs both at start and withdrawl, acne and liver affected
Stop all toxins ingested: so, that means no coffee, no chocolate, no tea, no alcohol (especially). This had a dramatic affect. Some people respond also to cutting out gluten and dairy. If you are going to do this i would recomend doing one thing at a time for a few weeks, then having it again and waiting a few weeks to see the results.
I had B12 injections once a week for 6 weeks. The theory is that there is B12 lacking not in yr blood, but in your brain stem cells. I don't know if this was effective or not.
Flax seed oil or evening primrose oil high dose every day. I took epo for a while and then figured it triggered mood swings, so switched to flax seed oil and that was much better. I don't know if it was effective or not.
Keep a health diary every day for 6 months at least, including your activity level, all of the food you eat and drink you drink, and then you can see if there are any triggers or any patterns. This helped me to see what foods made me feel worse, also made me aware that I had developed quite severe pms (which i was unaware of because i generally thought i felt like crap because of the cfs) which i am able to alleviate. There are articles about types of pms, depending on yr symptoms there are different things you can do. I take magnesium, and it decreases tension headaches and moods very dramatically.
Counselling - i had a counsellor, but didn't seem to help the depression which has been triggered by cfs, so now i am looking for another one. I think it is important to find someone who helps you. keep looking untill you find someone. One positive thing i do which changes my mood is to think of something i can do for someone which will make them happy, maybe buy them a present, write them a letter... That always seems to make me feel better about myself.
Exercise: I started with 5 minutes a day, because even that sent me to bed. But i have increased it very slowly, and now I can do 30minutes! No more than that though. I consider that i am recovering from cfs, simply because I am able to exercise now and before i couldn't. Yoga is the best thing for me, it reduces the muscle pain dramatically. Walking is the other exercise i do. NOTHING STRENUOUS EVER.
This letter is so long now that you probably are sicker from reading it!
Find out your triggers (mine are chemicals, toxin in food, stress, doing too much, changes of plans) and minimise them. Keep looking for doctors who understand cfs, that was a good help for me. Find things you can do which don't tire you out which make you feel like you have been productive...
Sometimes I get sick of trying to get better, and so I just stop trying for a few weeks, and then I start again. This tends to be depressing because I get sicker cos i eat things which make me worse.
Pain relief: accupuncture sometimes works for me, massage really works (only from a great massage therapist - get people you know who have been to a good one to refer you) exercise, especially yoga - stretching, and when the pain is really bad, take some pain relief, it's better to take something than to have the draining effects of the pain.
I really hope that this can help someone...
Kristina,
I was diagnosed with CFIDS 16 years ago & can relate to the experience that you are going through. It took several years before I learned to accept my "new life" & even embrace "the silver lining". I feel I am a better person since I've had to deal with this terrible disease. My relationships are more meaningful because I've given up any that were the least bit toxic & the ones that remain are so treasured because I know they are true. I appreciate nature more as now I have the time to sit & watch it unfurl. I know that I am a great person,not because of what I can do, but because of what's inside of me.
Hang in there. It does get better!
Sincerely,
Val Madison
Hello,
Hang in there! I can tell you that my CFS lifted a little after a year and a half. I think you really have to watch how the depression can creep in. You may not even know it is there. Of course this illness is depressing but it does not kill us..it makes us stronger. I have been sick for two years. The hardest part for me is trying to be like a normal 29 year old. I want a family and I want to enjoy married life. We were only married for a few months when I got sick. I know I got my CFS from stress and too many things in my life. I was just doing way too much and wish I would have slowed down sooner when everyone told me to. I will tell you that the best things for me have been hypnosis, eating well, guided imagery every day for 45 mins, acupuncture and being around people that lift you up. Also rest..I get chills and a fever if I do too much even mental activity.
I found that I have lost most of my friends but from that I learned that they really weren't good friends. I had to cancel a lot of plans and eventually I guess people just think you have control over this when you really don't. Trying to get people to understand is just too hard and not worth the energy. I still ahve a hard time copign with peopel that just think I am better because I look good.
Again hang in there b/c it does get better just keep thinking positive. That is the best thing we can do for our minds and body.
My diagnosis came in April of 1999. Like you, I was healthy and active, then suddenly wearing the lead suit, feeling as if I were walking through mud, too tired to move. I've been through a lot of doctors because some retired, some stopped being on our insurance company's list of providers, we moved, etc. In the beginning I took a lot of medications for sleep, depression, and pain but none of them ever made me feel "whole" so I finally gave up all but one medication that I take daily for chronic GERD, not related to my CFIDS.
My first crash put me out of work for 6 months. I went back to a low-stress position with a 25% reduction in pay. I managed to work for 2 years before two bouts of the flu that hit within a month caused a crash that lasted 18 months.
For the last 2 1/2 years I've been working part-time. Some days it's all I can muster. Some days I want to give up and give in and some days I kinda do but I never give up the hope that there WILL be an effective treatment for this disease in my lifetime.
What works for me (sometimes):
1. Eating a high-protein, low-carb diet. Not easy because the fatigue makes me crave carbs.
2. Drinking plenty of water.
3. Sticking to a bedtime routine. When my sleep cycle gets really messed up, I take Ambien for one or two nights to get back on track.
4. Supplements-Olive leaf extract and Pau D'arco.
5. Yoga
6. WRITING DOWN plans for my future and believing I will make them happen.
7. Being grateful for each and every day I wake up; being extra grateful for the extra-good days.
I'm so grateful to have a caring and supportive family. I'm so grateful to have the internet where we can find people who know how this feels and know this is real.
Don't let this ugly thing get you down. After losing my mom last year and dad in 1998 to cancer, I realized this illness ain't so bad.
Hang in there...putting your feelings into this blog, good or bad, is a great way to deal with them.
Where there's life, there's hope. Keep hoping!
I, too appreciate the first respondent's comments. I have had CFS since 1999. I can't believe it has been that long. I spent the first several years certain I would wake up one day and be fine again. As with many, I was also very active prior to this; working FT as a nurse, mom, and runner. I have learned a lesson in this I probably would never have learned otherwise, in that in slowing down I can find serenity and peace. I don't always have to be "doing" to be worthwhile, (but often I revert to my former busyness anyway) and pay for it later.
Please know that things can get better, even if there are good times cycling with not so good. Learning when to slow down/cut back BEFORE it is too late is a common theme, and one that has been extremely hard to learn for me. Thank you for starting this blog where we can learn from and support each other. As others have stated, one of the cruelest things about CFS is its lack of credibility to the wider world, so we need validation that it is real. Peace to everyone.
Sandy
I have had Gulf War Illness (a greater extension of Chronic Fatigue Immuno-Dysfunction Syndrome) since 1990 -- 16-1/2 years. I have not finished grieving the death of the person I used to be. I don't know if that is humanly possible. So I have not made it one of my goals.
I have two years of law school, and will probably never be able to leave the house long enough to finish. I also worked on my career for 30 years before I became the housebound, shut-in I have been since early 2005.
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