Was just told I am lucky.

So I was talking with a close friend of mine earlier who has just moved into uni. She asked me what have I been up to, I was honest and said ‘nothing really, have hardly left my bed all week’ She replied with, ‘you’re lucky’. 

The reason I haven’t left my bed is because I’m in too much pain and too depressed to do so. That’s not lucky at all. If I was able to leave my bed and do stuff I would, but the fact of the matter is I’m not. This friend knows my troubles and knows I’m sick and in pain, yet she replied with that. 

I know they don’t usually mean to offend but it gets on my nerves. She’s the lucky one, she’s off to uni, she doesn’t have health problems that stop her from doing what she wants, she’s pretty much normal. I wish I was, I wish I was able to finish school and go to uni like her, but I can’t. 

I’m forever having people say I’m lucky. It use to be you’re so lucky you don’t go to school, shortly after I dropped out of school. Or it’s you’re lucky that you don’t have to work. I don’t go to school cause I can’t and I am unable to work also. If I was able to I would, but I’m not. 

How would you like it if you had health problems that stopped you from doing things and doing things you want to do. I bet you wouldn’t like it either and wouldn’t consider yourself lucky. 

 

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17 thoughts on “Was just told I am lucky.

  1. It’s really hard, I think for people to understand long term pains and illnesses unless they have experienced it. I know for me, I couldn’t really understand or relate when a friend of mine had lupus; I mean, she looked healthy. Having had chronic pain now for years and looking healthy, I get it. It’s hard to be dismissed so lightly by people who should care, people who should understand but don’t . Thanks for your post.

  2. Sian – my daughter who is 16 has been suffering with New Daily Persistent Headache since Feb 2009 – her last part of 5th grade. Now in 10th grade, it is a struggle every day to get up and go to school and the stress and worry about keeping up and grades only makes it worst. I sent her to school this morning dying a thousand deaths in my heart as she gave me that look of despair when she got out of the car. I understand what you are going through. What you need to do and I tell her this as well – is don’t be so hard on yourself. It’s not your fault. Did you have Epstein Barr Virus (mono) before starting the HAs? My daughter did. Have you ever tried Neuro Feedback? After 3 hospitalizations – DHE, Haladol, Botox, all the anti seizure meds (Topimax Depakote), Lexapro, Valium, chiropractic and acupuncture – none of which worked and made it worst – we found Neuro Feedback gives her coping skills. That is key. How to cope. It breaks my heart to see her sleep all the time and not feel like participating in high school football games, going out with her friends to movies and concerts, etc. etc. But right now it’s one day at a time. I am always here to listen — I truly understand and I hope you have a loving and supportive family and circle of friends too. Don’t be afraid to share your struggles because honestly it is hard for others to truly understand. Anytime you need to get things off your chest, don’t hesitate to write me. How old are you? Perhaps you and my daughter might like to become email/text friends?

    • Sorry to hear your daughter suffers from it also. Never heard of neuro feedback will have to look that up! I have tried DHE nerve blocks and botox and also a load of medications also, and many alternative treatments, none of which have helped in the slightest. I do have a very supportive family though and a few close friends so that’s good. I am 19, so a few years older than your daughter but would be more than happy to become email friends or facebook friends, it’s lovely to speak to people with the same condition who understand what it’s like makes you feel less alone, let me know if your daughter wants to get in touch, she can add me on facebook or email me, or I can email her I really don’t mind, just let me know and I will send you the details of how to get in contact with me.

    • Sorry to here about your daughter. We have a daughter the exact same age as yours. Our daughter has had NDPH for just over 2 years. WE are considering LENS. It would be good to “compare notes” sometime relative to your journey. I to would also like to explore having the two of them connect Via facebook, etc.

  3. Sian – I am going to speak to Lauren and suggest that it may be good to share with a contemporary…….definitely investigate neuro feedback. It’s been the most helpful to us. We are seeing her headache neurologist specialist Friday and her pediatric neurologist on the 30th. Hopefully, we will gain some new insight as to treatment. One thing I know is that there is a lot more discussion and awareness of NDPH today than there was 4 years ago. How long have you had them?

  4. February 3, 2009 — Tuesday morning – woke up with headache and sore throat — isn’t it amazing that one of the characteristics of NDPH is the sufferer can remember the exact date of onset?????

  5. I know exactly what you mean. I’m also unable to work and I’m on disability. There is nothing lucky about that, as I loved my job and I miss my friends from work so bad. Having no paycheck really sucks, too. I don’t consider disability a pay check, it barely pays for my insurance and that is it! What’s wrong with these people, anyway?

  6. Pingback: The Liebster award. | The never ending headache

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