sleepingbea...

Biggest Struggles...

Posted on 08/23/09, 08:19 pm

Hi everyone. Im relatively new to this group. I was just Wondering/Curious... b/c we all have different health issues and concerns.... what's everyone's biggest struggles??? Struggles you face throughout the day, at work, in a relationship, dealing w/ family and friends???


* I have Narcolepsy and my biggest struggle (obviously) is waking up and getting through my entire day being exhausted. So exhausted I always have bags under my eyes, my head/eyes feel so heavy and hurt, I am just so mentally and physically exhausted the little energy I have focuses on staying awake. My family , only my 1 sister knows and I'm not so sure she believes me. My friends, only very few know and they dont understand narcolepsy at all (some dont even know what it is). They just dont get it. Strangers(and sometimes friends or boyfriends) think I'm lazy, crazy, making excuses, or just making stuff up and it's something normal everyone faces w/being tired. But, it's NOT the same. Relationships are a whole new issue... they never get it. They dont see why I'm so tired. It causes fights and complications when I just try to explain myself, find ways to deal w/ N me and the relationship, and try to compromise. It's bad and hard enough I'm trying to figure things out myself, control my N, get doctor's help, fight/struggle with myself, find treatments, find things that work, etcetc...
I was just seeing if anyone, was going through hard times, struggles, complications, whatever....

Thanks !!!! Best wishes to everyone*

• Reply #1 09/12/09  12:06am
  
  fibonae
  I have struggles with every day life cause of my illnesess. I can name the 4 big ones. Narcolepsy, raynauds, fibromyalgia, and chronic myofascial pain syndrom. And quite a bit more. You just have to find a way to cope with it. And believe me it's not easy! And it's not easy to raise a family while you are sick all the time.
• Reply #2 11/18/09  11:17am
  
  Lizzie
  I have struggles. First because of my learning difficulty. I am high functioning enough to just about manage. But my parents own my flat and I pay them rent. I have problems with bills and forms. I struggle with day to day stuff. I don't tell people about it as I know the attitude at my work is to laugh at learning disabled people and say they make it up to make their exams easier.
  
  I struggle with my diabetes. It is a constant balancing act that tires me out. I hate having to always monitor and calculate every action and every bite.
  
  At the moment I am struggling with my feelings about my mum. She has breast cancer and is in hospital. I have been to see her once. It made me so upset I could not go again. My sister is visiting her. Earlier in the year my sister and stepdad went on holiday together for a break while I stayed and looked after mum. So now it is my sister's turn for a week while my stepdad is away on business. I know this and I know my hospital phobia is not my fault but still I am berating myself inside for not visiting.
  
  Sleepingbeauty, is there any charity or someone who makes a wallet card about narcolepsy? I know various people make them about diabetes. If not, maybe you could make some at one of those places that make business cards. Just put some basic info about symptoms and causes and what to do if you fall asleep etc. Or maybe some medical alert jewellery would work?

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