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  • I don't know how much longer I can keep going like this

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    Old 04-22-2013, 06:07 AM   #1
    luminescent
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    I don't know how much longer I can keep going like this

    I've been saying that for over a year now, being at the end of my rope and wondering when I finally will hit the end (and what will even happen when I do). I'm so behind in life. I'm just behind on everything. I've stopped seeing friends and I've even started cutting back on seeing my boyfriend, the one person I do have in my life, so that I have more time to take care of things. Everything takes a massive amount of time because I have to make sure that 1) by some miracle I feel awake enough to do something 2) I get all the pre-reqs to actually doing something done 3) take my nap because I'm now exhausted for the day and 4) by some miracle that I feel awake enough to do something, actually do it. In between these already difficult phases, I have to take my daughter to school at 8 am, pick her up from school and take her to an after school place from 2-3, then pick her up again at 6. I'm not given any proper time to even take a restful nap or get much done if I actually am in a mood.

    Speaking of my daughter, here I am fighting with this as a single mom, and I have not even spent time with my daughter in years. I can't be here for her - I'm not awake enough to, and if I am, the energy just simply isn't there to deal with the ADD she inherited from me (of course she gets the hyperactivity while I obviously don't), and then if I am awake with energy, I have errands or homework to be done!

    Because yes, I am in school again this semester, and even though I quit my job to be able to focus on school, I ended up dropping a class (so I now fall below full-time) and I'm still absolutely struggling to stay caught up on work. Errands in life (especially dealing with DSS to get aid so that she and I may even continue to fight this battle) are always behind, always miss the date, I'm always paying fees out and spending extra energy to continue functioning in the every day world, but I can't remember anything enough to get it taken care of well. I write notes, I have to do lists, white boards, notebooks, reminders in my phone, everything everywhere, and no matter what I try, nothing actually helps.

    I'm getting more and more trapped in my mind trying to figure out what is wrong with me since no doctor cares, but it takes more and more time away from the little I do have that I could be sharing with my boyfriend, or gasp, trying to enjoy being 25.

    I'm losing my age to this. I'm losing my life. Every day is a battle to get through the day without serious repercussions. Today's battle? I skipped a class last week because I've had perfect attendance so far and I judged the day as being more helpful to me if I stayed home to work on homework rather than going, but then I didn't check the syllabus to see what was going on that day and turns out the class watched a film and a response is due this morning. Now I don't have time to find it, watch it, and respond before class and the teacher has already said she won't accept anything late (of course I'll ask anyway, but now fear has already creeped into my day and it's only 8:45 AM). It's a small thing, sure, but I have at least two things like this every single day, always something new, and with my scatter brain, I just can't keep up. Then I'll spend the rest of this week struggling to get things done with my seemingly endless free time, realize it just isn't possible with my daughter's constant needs throughout the day, eat dinner and fall asleep right around her bedtime and look forward to the weekend giving me all the time I need. Then Saturday comes and I sleep all 24 hours of it!

    And then I can't remember anything. Thinking wears me out. And I love thinking so much... philosophy gets me going so quick. But I can't think, I can't stay awake if I don't take a strong dosage of Adderall or sometimes even ibuprofen helps, eating puts me to sleep so I get fearful of eating, but then I can't take Adderall if I don't eat and it makes me scared to take my antihistamine and decongestant pills without eating too, plus I start feeling *awful*. If I shower, I feel awful so I don't enjoy them much either. It seems like the only times I do feel okay are if I am out of my home and just don't come back. I tend to actually stay awake and mentally feel better then, but I can't actually do my homework away from home, I can't afford to eat out, and I do have a child that can't hardly be taken out in public...

    I see doctors, my primary doctor ran so many tests but ultimately concluded IBS, gave me antihistamine and decongestants for a year and sent me on my way. A lot of the problem is that I appear so completely fine to everyone else and especially with my intense brain fog, I can't even begin to explain to someone what's wrong. I can only remember rehearsed key points: memory, fatigue, digestion, post-nasal drip, headaches, etc, and symptom lists don't convey much of anything (I'm sure you've all noticed by now that we have the symptoms of almost every disease out there).

    I start getting off into tangents of trying to figure out what's wrong on my own, and I always get so far down a road somewhere, something seems interesting, but either I can't hit the end of learning about it before exhausting myself, falling asleep, and forgetting that I ever was looking into it (or if I do remember, being able to pick it back up or "I'm so tired, I can do it later when I have more energy"), or it's something that relies on a test that a doctor won't do. You know, I've asked to have my adrenals tested for four years now and a doctor just won't do it. Of course it's rare when it isn't tested for, ever!

    At the same time, there's just no support. I think for all that I have to deal with, for everything that's on my plate and the extreme fatigue, exhaustion, and pain I deal with on a daily basis that I am doing really damn well for myself, but once you can hold that face that everything is reasonably okay, people will believe it and you can't convince them otherwise. So now I have a roommate hating me because I may take half a day to do my dishes, probably a boyfriend who thinks I'm hopeless because I moved into my current apartment 9 months ago and I still haven't fully unpacked and set up my room and it's a mess with clean clothes everywhere because I can't ever get the energy to get *all* of my clothing clean and in the closet at the same time, organizations who think I'm just another delinquent young adult trying to get freebies, teachers and other school officials who think I'm a horrible mother because I'm late a couple of times in picking up my daughter (like 5 minutes), etc etc, just constant unspoken or obvious judgements from the world around me about how well I'm doing as a human being, not having any clue what a day in the life is like and how quickly I *know* all of them would succumb.

    But now I'm the one succumbing, finally. I don't know what to do. I need treatment and I understand that seeing a doctor is likely not going to be my best route, but there's so much information all over the internet on CFS that I just don't have the mental energy to sort it all to figure it out.

    Why can't we all work together in piecing together info in a usable format for everyone? Wouldn't that be really nice, just one source to turn to?

    Sigh... I don't know. I don't feel to know anything anymore. What am I to do? I get scared to even take the ibuprofen pill every day. As it is, I need double the regular dosage for possible energy control, and I know how bad ibuprofen is for your digestive system. But Adderall isn't a much better alternative either! At the very least, aren't there some anti-inflammatory herbs? I've researched them before, but of course got too tired before deciding which one would be best to take.

    Last edited by mod85; 04-26-2013 at 12:30 AM.

     
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    Old 04-22-2013, 11:26 PM   #2
    Berlian
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    Re: I don't know how much longer I can keep going like this

    Can you make a description of
    your problems or symptoms with more detail? So we can
    easily understand and see if I
    could help.

     
    Old 04-24-2013, 02:47 AM   #3
    Madeofglass
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    Re: I don't know how much longer I can keep going like this

    Hey.

    I'm pretty much the same age as you and feel the same way. I've been to so many doctors, they've tested me for everything and the only thing they can sort of find is "fibromyalgia" (which in itself is a very complicated disorder that can't be explained or understood by anyone, including me) . So since there was never no blood test confirming fibromyalgia, I get paranoid wondering if I actually have _something else_ like CFS or if I'm just "nuts".

    I hardly have any energy to do anything either- and I'm the sorta person who's always like "throw everything at me, I'll manage!"

    Then at the same time I feel bored/feel like there's so much stuff I'd like to be doing and researching but I'm not sure if i'll have the energy.... and it's scary.

    I don't know if i'll ever study again or do anything to support myself financially. I just CAN'T wake up at 7am five days a week, study, do my homework, do all the chores, and then try to spend quality time with my boyfriend (yeah and I'll probably lose him soon anyway..)

    The society and life in general is just so damn hectic these days that you really don't have to be incredibly ill in order to not be able to cope with it.

    Even the so called "healthy, normal people" are drinking coffee while popping vitamins at the same time hoping to get everything done. So really, it's not our fault.

    I also found it interesting how you mentioned ADD.. it's something I myself might also have. I don't know if "being tired a lot" is part of the disorder.

    Take care.

     
    Old 04-25-2013, 05:00 PM   #4
    zimzampow
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    Re: I don't know how much longer I can keep going like this

    The first thing you need is a great big hug from someone like your mother or boyfriend, someone who does not have any answers but just knows how to listen and be empathetic with you. It's amazing how much a few simple words with a hug can make a difference. Words like, "I understand," or "It's all right, it will be okay." It seems that you feel no one really understands you, your contributions, or your stress. And that's a hard place to be. Please know that you are not alone.

    You need a new doctor. IBS? That's it? What a crappy diagnosis.

    I have CFS and it took over a year of testing by my doctor to conclude that diagnosis. I read everything I could find on CFS and other stress causing factors. I am going to suggest a few things to you and who knows? Maybe it will help. I sure hope so.

    In my research, I was really surprised to find out how much stress can produce anxiety and the impact it can have on you and your life. Most of us don't really realize that stress is a very sneaky culprit. I would encourage you to read an article by the Mayo Clinic: http://www.mayoclinic.com/health/stress-symptoms/SR00008_D)

    As I mentioned, please get a new doctor and let him in on what's happening. Ask him for a referral to a psychologist. Please don't think that seeing a shrink shows weakness. Being open to that shows strength and like Dr. Seuss said:
    "Be who you are and say what you feel because those that matter don't mind and those that mind don't matter." Dr. Seuss has many cool quotes.

    Also if you are a member of a church, (or even if you're not), priests are very good listeners. Many have studied Psychology and are truly a beacon of light and comfort.

    And don't forget about mom, best friends, sisters, or maybe even your daughter for empathy.

    Good luck to you.

     
    Old 04-25-2013, 05:48 PM   #5
    sminolympia
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    Re: I don't know how much longer I can keep going like this

    It's like I've found my people I agree with everything you have both said...I have become a master at escaping to take a nap!! I too have been diagnosed with Fibro, and too have wondered if I'm just crazy...After a very frustrating visit to what is my 3rd rheumatologist, I am going back to my GP and will probably be back to my naturopath...If naturopaths in general are anything like mind, I highly suggest going to one...In my experience, they actually LISTEN and don't treat me like I don't matter...My naturopath busts his behind when I go to see him or his wife to get me to feeling better!!! When I tell him I'm tired, he doesn't tell me to go get a cup of coffee and grow up...He understands my desire to not be on every pharmaceutical that has ever been made...Usually, after I go see him it's when I'm fed up with Western Medicine, when in reality he really should be my first call...Moral of my story: DON'T GIVE UP...it's not easy; this I understand all too well right now...I can't even imagine having a child and feeling this way...See if you have any naturopaths in your area and if you don't have insurance or they don't cover natural medicine, see if they will take payments as my local natural doctors are all very understanding about these things, and I haven't heard of any here that won't work with you somehow...Good luck!!!

     
    Old 04-26-2013, 11:18 AM   #6
    sasrei7
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    Re: I don't know how much longer I can keep going like this

    Have you had your thyroid tested? Hypothyroidism can make you really tired as well.
    If you have CFS its all about pacing yourself, yes it sucks lol but you can still manage to have some form of life. On days you have school don't do anything to hectic the day before, cfs tends to hit harder the next day. Learning to manage stress can help quite a lot and if you are depressed that can suck all your energy as well. With fibro doing exercise actually helps, have you thought about finding a fibro specific yoga program? Yoga is great for calming the body as well. If your doctors don't care find another doctor and keep looking until you get one what actually cares. Specialist tend to... not really care atleast the one I went to, but I am lucky to have an awesome GP who is understanding about my concerns Id say for sure talk to your boyfriend and let him know fully whats going on and how you feel about it. If he loves you, he will understand. IBS is always concluded when doctors have not clue what you have lol, basically everything is always try to treat the symptoms to be at least manageable. For schooling have you talked to them about it? Some schools can cater to your needs or depending on what you are taking, you can try online.

     
    Old 05-10-2013, 11:18 AM   #7
    Kellydiva3
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    Re: I don't know how much longer I can keep going like this

    I don't know if this will help you but the best thing my phychologist ever did for me was prescribe me ADDERALL. I have been on cymbalta and savella for a year now for Fibromyalgia and tried Nuvagil for my CFS but it didn't help. Finally after having to leave work early for the 10th time due to CFS, I told her I needed something to get me through the day. When I take it, I can concentrait and focus. I am tired but not overwhelmed by fatigue. My quality of life has greatly improved. I am not a doctor and so I don't want to assume this would help you the way it's helped me but I had to let you know how much it has changed my life.

    Sincerely and with love,
    Kelly

     
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