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Posted , 9 users are following.

emma15009
emma15009

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 within the next month. 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 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 deficiency or anemia. The constant tension headache that I have is also hard to deal with, I have to take up to 7 Tylenol a day to keep the head pain under control. All of this is happening and neither my parents nor doctors believe it is this severe even though I've been bedridden all weekend. And to be honest, I oftentimes feel like dying would be better than this, something I'm sure a lot of severe ME patients can relate to. I don't know what to do. Why is my fatigue this bad? I genuinely feel like I don't get any sleep even though I get at least 7 hours a night. Please someone say something hopeful or encouraging because I feel buried fifty feet under the earth watching everyone else my age be happy.

1 like, 38 replies

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  • emma15009
    emma15009

    Posted

    I would just like to say thanks to everyone that has replied to me, it means a lot and it feels comforting to find people in the same boat as you. My best friend is very supportive and there for me, but he can't possibly understand how bad this feels, both physically and mentally. My parents don't understand either and doctors look at me like I'm just a unicorn with depression. SO THANK YOU. We're in this together and it's nice talking to all of you. I hope we can all get better and help each other cope in the meantime. 

  • JulieBadger
    JulieBadger emma15009

    Posted

    Hi Sweetie,

    Just read your post, I've been poorly so couldn't reply sooner.  I'm sorry if I say things which others have said but I haven't the energy to read all those, I'm sure, lovely and very supportive posts. 

    It sounds like you're going through an intense time right now due to school pressures and your feeling of hopelessness.  The best way to reduce your symptoms is by reducing the intensiveness of your life at this time, which isn't going to be easy but from your post I can tell you are a very intelligent 16 year old who just needs guidance and understanding.

     

    As humans we understand things more if we can see them and especially if they can be explained, which is why M.E./Cfs condition is a widely not fully understood condition.  This is why others ie your family and doctors who haven't specialised in this ares of illness struggle to fully support us, because it isn't fully understood and especially the definite way to cure it. Why it starts, some remember illnesses they didn't fully recover from and some don't (I'm one of those), why such a range of differing symptoms are experienced by different people and why it can't fix itself, is what makes our condition so complicated. The Scientists haven't been able to understand, therefore explain, then learn to fix-it yet, which is why we struggle and feel hopeless at times.  But it is not hopeless!wink

     

    Your Brain is malfunctioning and the Brain is such a hugely wonderful but complex organ that we mere humans are still struggling to fully understand how it works.  Unfortunately our brain's are being naughty, not because it wants to, in fact it believes it's protecting us.  However in protecting us it uses up too much of our body resources, ie. energy etc, which then creates the numerous symptoms which we then suffer. Our Brain is our friend, it's just doing it the wrong way, so we've got to "thank it", because telling it off gets it 'moody' but gently calm it down and teach it the right way to look after us.  I'm doing this using the Gupta Recovery Programme developed by Mr Ashok Gupta, who had M.E. at University (you can find it through Google).  I am improving, in fact if you don't recover within 6 months you get your money back - which helped me take the plunge. There is free stuff you can watch first with a good explanation of the condition and why we are suffering from it, which you and then your parents can watch. My extremely helpful doctor, who fully believes in M.E. is encouraging me to progress with it.  

    To give you hope: I have had Fibromyalgia and then developed severe M.E. for about 25 years, starting from about 14 years old (yes I'm a very ancient 40 year old now).  I was mis-diagnosed until about 7 years ago as my mum said "I had a bad back and got stressed a lot". Life hasn't been easy but I've certainly achieved a lot so far! I'm an Architect (studied at Universities) with 11 GCSEs, 3.5 A Levels and an Advanced GNVQ.  I'm married with two children of 13 and 10 yrs and helped build our own house with my hubby (yes physically built it).  I did train working for 2 architectural practices but now work for myself as a practice wouldn't employ my energy ability now. So if I can do it - you can too sweetie (remember I'm registered severe M.E. now).

    Hope this helps you and especially watching Ashok Gupta's theory xxxhugsxxx   

  • caroline_74621
    caroline_74621 emma15009

    Posted

    Hi Emma. I had glandular fever aged 18 (exactly 20 years ago) I was at college doing a diploma, as well as a part time job and being an 18 year old. It’s so tough when your friends can go so much and it’s your body that is saying Nope! 

    This year has been very stressful,along with trying to build a business and grieving for my grandmother, and now it’s all caught up with me. I suffer with SAD since I was 10 but was only diagnosed last year.So I am on my happy pills during autumn & winter.I realised I was getting the same symptoms but not depressed and feeling good about life. I have had all the different blood tests and started my own research. Once I began to talk with others with cfs it all made sense. 

    I’ve had these symptoms before over the 20 years but was with a partner who told me there was nothing wrong and to get on with it. My family also thought I was a hypochondriac. It’s hard for anyone to take me seriously. 

    But over the past few months I’ve had more time off work and now been off for 3 weeks. I’ve just been away for a week and should be feeling refreshed instead my body aches and I’m shattered. 

    I know it’s easy to say this but don’t be too tough on your mum, she might be tough on you but your family may still be really worried. I’m 38 and didn’t think my mum believed me until my aunt had said just how worried she actually is. If you’ve got a family member who you get on with let them know how you feel and that you’re not playing  wolf, this is what’s actually happening. Take care. x

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