Meet member Marisa, her story has been reposted here:
I was just recently diagnosed with chiari 1, but have had symptoms for 6 years. All from headaches, memory loss, blurred vision Nausea, dizziness ,balance and coordination skills , muscle and joint pain. The fatigue I think has got to be the absolute worst. I can't seem to keep up with out fighting hard. I have 4 children and am a single mom. I have come to a point where I feel like I have become a disappoint and a headache to them. I try not to complain or ask for to much help.I want them to be able to live life to the fullest. Not carry the burden off my illnesses. My diagnosis's are graves disease, fibromyalgia, Raynaud's disease. And so much more. But my reason for joining this group is because after reading about chari. And thatbibwant to learn more bout chiari and ways to get through.I am starting to wonder how I have went this long being mis diagnosed. Still trying to put it all together. Anyone feel the same? I know this sounds crazy but as many different diseases as I have been diagnosed with, I am so praying that I can gain some relief of this 6 year rollercoaster ride. I don't know upnfrom down , or left from right. Anyways thanks for having me and reading my "short" story lol. All advice/questions/or comments welcome.
Reply by Marisa:
And just wanted to add. I went to visit the neurosurgeon today and he told me that because I have so many other illnesses he does not think right now is a good time to do the decompression surgery. I am not gonna lie I kinda was really hoping to get it done. In hopes that maybe I can get some what better. I know the risk factors involved , and that there is a chance that symptoms may come back or possibly become worse. but my daily living at the moment is quite challenging as is. would give anything to regain some type of normalness to my life again. I just really feel like im disappointing everyone. and am becoming severely depressed. I have been fighting since 2009 and just really want to give up. seems to be that no dr's can help me get back to where I need to be. its just so frustrating.
Reply by Fugu:
Never forget that what you're going through isn't your fault. You didn't make the decision to get sick. It just happened. I know it's hard not fo feel guilt about how it affects our loved ones, but still- we all are doing our best and in my eyes that can't be dissapointing.
Replies by Marisa:
Thank you for you kind words. Andbim know its not my fault or choice. But they definitely make it known that it has become much. Like over simple things like dishes, or laundry. I will do most of this just to avoid conflict in the house. But it gets really hard some times.
My boyfriend at one point had mentioned more or less if things did not start getting done in the house he would uo and leave. That mortifys me.thatbhe didn't want to have to carry alkbyhe burdens of taking care of the baby. Do house hokdbchires and such. I have a 15 yearbold daughter who should be helping and is very lazy when it comes to asking to do chores. Itba constant argument between the 2.