I'm feel like I'm rotting away, I want this to end...

Posted , 6 users are following.

Hi guys, so I'm getting really desperate. As I write this, I feel too tired and weak to even sit up. I have piles of homework on my desk that I physically cannot do because I feel like I can't keep my eyes open. I'm only 16 and I'm practically disabled because of severe fatigue that cannot be explained. I have a mother who doesn't seem to believe that chronic fatigue syndrome is real. I've seen doctors and certain basic stuff has been ruled out, like anemia and thyroid disease, but my doctors, while super caring, won't do much more. I've been offered sleeping pills, but I'm terrified to take prescriptions for the fear that they will only make everything worse. I'm supposed to get a sleep study done, but I can't seem to get one scheduled and it's been months and I still can't get one done. I haven't been properly diagnosed with CFS, but I know that's what my diagnosis should be. I wasn't always like this. I mean, I've always had a degree of disabling fatigue, but it's never been this extreme. It's like this has developed slowly over the years, a virus growing within me insidiously, and now it's full-blown with symptoms. I don't wanna live like this. School is impossible but my parents won't let me stay home. I feel like I have no help or support from my parents or doctors. I can't read because all the information goes into my head and then goes right out, I can't remember what happened yesterday. I'm never gonna be able to finish high school, let alone go to college or ever get some sort of job. I don't wanna live. I don't know where to turn, I can't talk to my mom without getting into a fight. Maybe this is just a flare up. Before the school year began, I became extremely fatigued like this for about 2 weeks and then it improved a little and became more manageable. For a few weeks, I seemed alright and now, for a week so far I'm bedridden again with no identifiable potential trigger. In the midst of feeling like you're dying, what can you do? Is there anything that will make this better? I do notice that if I take a super hot shower, my energy improves slightly for like 20 minutes afterwards. But even then, the heat doesn't really help. Also sometimes it doesn't feel like my body is fatigued, just my mind, head, and eyes. Most of the most troubling symptoms is my "tired eyes." They feel wet and freezing cold and this makes me constantly feel like I need to close them and sleep for 20 years. I'm pretty pale and always freezing to the touch according to other people, but I don't have an iron efficiency or anemia. I have a therapist that I talk to in order to fight the suicidal thoughts that come from this fatigue, but therapy isn't working. Unless this fatigue becomes manageable, I'm gonna wanna die. Please someone say something hopeful or encouraging becasue I feel buried fifty feet under the earth watching everyone else my age be happy.

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  • Posted

    Hi emma15009

    We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

    If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

    Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

    If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

    Kindest regards

    Patient

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  • Posted

    Hi Emma,

    I hear how alone you feel with all this right now and that you're seeing a bleak future but, this is how you feel right now and I know from another post that you are hoping for home tutoring which will help. My daughter has really struggled school wise and there's been much upset and fear about the future.

    What are you hoping to do? As I mentioned before, my other daughters friend managed college. She also got married this year which is huge! Her partner is supportive of cfs/me.

    I know you don't have a diagnosis as yet and I hope the sleep test is soon. Sometimes things become overwhelming and it's easy to feel alone and unable to manage.

    I really hope you can talk to someone close about how you feel, your therapist or as the moderator says, the equivalent of the Samaritans in the US.

    You're not alone, you can talk to us guys on the forum but, i think school and mum need to know how low the pressure is making you feel.

    Beverley

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  • Posted

    Dear Emma I am very sorry about your situation, which everybody here will immediately understand. Are you in the UK?

    I would say that the first thing you need to do is make sure you have cfs/me. Your symptoms could be other things, and unfortunately we do not have a reliable clinical test yet. If your  GP is someone you can talk to, you could ask for a biopsy to be taken from one of your muscles, and tested for damage to the mitochondria. This is the closest we have to a test for ME, and at least some Gp's are aware of it. If you do not have ME but something else it is important to find out, as it might be something that can be cured!

    Secondly, find online a ME organization. I cannot find any for you before I know whereabouts (as in which country)  you are, but there are many, and so they either make pamphlets about our illness, or offer people who can educate your parents, or have information on their web site. Clearly your parents are clueless, and they need information and you need allies who understand, so you do not feel completely alone in this. These organizations can also often refer you to help of one kind or another.

    These things are very important first steps.

    If it is ME, you are in for a big change in your life which must be accepted - eventually. But with your age, your have a very very good chance that a cure will be found in time for your to benefit - do not forget that.

    You have friends here, do not jump out of this world just yet, Emma. Chances are that things will get better, maybe a lot better, and that particular solution does not go anywhere. Please be patient for a while yet, and let us know here how it goes. Write as often as you like.

     

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  • Posted

    I have CFS and have endured hell. I was one if the worse cases the Mayo has seen. Please feel free to private message me and I'll be glad to talk to you and help you in anyway I can. You have friends here and I'm willing to be one. Feel free to ask me anything.

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  • Posted

    Hey guys,

    This was my original post and I wasn't sure if it posted or not or if it needed to be monitored and a few days past, so I edited this and made my other post. So that's why I have two nearly identical posts lol.

    Yes, I am battling suicidal thoughts and I'm not trying to hide it anymore. I will hopefully be able to speak to my therapist soon. I am doing a lot of personal writing with what little energy I have on my blog as I find that writing is sort of my life-saver at the moment. That and music. I have emailed my teachers at school and explained how bad my fatigue is and what's going on with me mentally and they seem supportive and have no problem with me taking excessive amounts of time to turn in assignments. I'm trying to wait it out and see if this storm will ever clear up a little. I mean, just 2 weeks ago, I was much better than I am now. But 2 weeks before that, I was bedridden or at least house-bound. So it seems like the fatigue comes in alternating phases of "manageable" and "hell." 

    I have received so many replies and I feel like I can't keep up to respond to them all. I'm overwhelmed by all the support cry <3

    I'm fairly certain that my mother just made another appointment with my primary care doctor today, but I'm not sure when this appointment will be. Sleep study probably won't be scheduled for awhile, we are still waiting for a call with the appointment date this week. I promise to keep everyone posted. 

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  • Posted

    Well it looks like most people have covered this, so I'll just write something a little different. Do you wear glasses? I ask because in the last few weeks I've noticed an increase in the headaches I get from CFS. My wife booked me an eye test (I haven't had one in five years) and it turned out that even though I used to be a little long sighted, I'm now a bit short sighted and have an astigmatism, which I've recently started wearing glasses for. This has already reduced the headaches and I feel is helping with my fatigue as I don't have to use as much energy to concentrate on my work without my eyes losing focus like they used to. Maybe this could be something similar for you if you don't wear glasses or it could be worth another sight test if you already do wear them?

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