Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I am having such a hard time right now. I graduated with my business degree in December, and while it was really hard going to school with the constant pain and headaches I managed it because I scheduled my classes so that I was never at school for more than 4 hours a day and I knew that there was an end to it eventually. But now that I am done school I am just so lost and panicked about what to do because there is no way that I am capable of working in my condition, so like what kind of life am I supposed to live?
There is no way I could stare at a computer screen for 40+ hours a week, it would kill my head and eyes, but like my degree is in business, that is what you do! I have had this constant headache for 2 years now, no break, and nothing the dr's have given me have helped in the slightest. I just feel like such a shell of a person because I don't do anything anymore, and I have now lost 103 pounds so weight loss is not going to be my magic cure and if anything I think they created a new issue for me with that one. I just don't know what to do. How do people work when their heads are hurting all the time? I feel like I had all these things and goals planned for my life and at only 25 years old they are all shut down because I honestly don't think this headache is ever going to leave me alone.
- sorry for my little pity party
There is no way I could stare at a computer screen for 40+ hours a week, it would kill my head and eyes, but like my degree is in business, that is what you do! I have had this constant headache for 2 years now, no break, and nothing the dr's have given me have helped in the slightest. I just feel like such a shell of a person because I don't do anything anymore, and I have now lost 103 pounds so weight loss is not going to be my magic cure and if anything I think they created a new issue for me with that one. I just don't know what to do. How do people work when their heads are hurting all the time? I feel like I had all these things and goals planned for my life and at only 25 years old they are all shut down because I honestly don't think this headache is ever going to leave me alone.
- sorry for my little pity party
are you treating your sleep apnea?
you may not be able to work in the typical sense. you may be able to work managing someone's business from home, in a part time way that you can tolerate.
but many of us are on disability.
I feel ya... right there with you this past week!
This is a huge source of grief for me, and for many of us, I think. It is so natural to be feeling the loss and struggling with knowing how to make your way!
I am 28. I worked at an outreach worker for a few years then went back to school to become a nurse to work with people facing marginalization, landed my dream job in a health outreach clinic working with people who experience homelessness, had been working only for 2 years and then got sick. I was off 6 months, started back at 2hrs a day, now work 16hrs a week and sleep 2hrs a day to cope with the pain & exhaustion that is heightened by working. I have had to have workplace accommodations as there are things I can't do anymore due sensory hypersensitivities, cognitive effects, etc... My work place has been amazing at helping make a place for me to be there. Monday will be my 1 year since going back to work. The anniversary makes me dialectally feel like a warrior for surviving, and at the same time wounded for how difficult it has been.
My dream was to do street nursing... now my employer has me doing project work for them (from a quite, secluded office all by myself--they offered to let me work from home-- I chose to still go in to the office because I need to not be at home alone all day every day--I'd go more crazy). I go from deadline to deadline, never knowing if there will be funding for another project--I still have my permanent position front-line nursing and disability to fall back on I guess... but I am unable to work front-line anymore... I am trying to see how this is an opportunity to try something new and make a way for myself to still be productive and meaningfully contribute to something I am passionate about (even if it's not ideal). Hopefully you will find your niche!
The IIH UK site has a good link on employment and tips for ways to think about it. http://www.iih.org.uk/images/EMPLOY.pdf
The shell of a person you feel like... I think, is you (is all of us who also feel that way at times) working through "who am I now" that your physical body is dictating what/who are able to be/do... not easy at all...
Hang in there... we are all trying to find new normals, new ways of still living fully, wholeheartedly, enjoying the world, the moments-- through this mucky messy cursed disease...it's not easy though...