The Tip of the Iceberg
May 26, 2016
I have Fibromyalgia, Myalgic Encephalomelitis and Postural Orthostatic Tachycardia Syndrome. As a result of these perhaps I also suffer from extreme reflux and have had a gastric bypass to try and control symptoms such as coughing up blood and permanent lung damage from aspirating acid. I have had a section of bowel removed for diverticulitis and also suffer from irritable bowel syndrome. I have no doubt that all my conditions are linked. I live with daily medium to severe pain in all my joints and soft tissue, stomach cramps that can be mild to absolutely gut wrenching. My cognitive function fluctuates with how well I am feeling, some days I am hard put to hold a normal conversation as I can't remember simple, everyday words. Other days I could win a trivia show. There is so much more but the list would just be too long. This all said I am one of the lucky ones. I am unable to work now however I am not bed ridden. There are days/weeks where I am house bound but very rarely do I have days where I can't get out of bed. I am still able to enjoy simple things and live a happy life.
Hi Alexandra. I hope you will be better. Sorry because my english is not good. Well believe me that I understand you because I have around 10 years with syntoms that make my life very difficult. Sometimes I can not work and I have to be on the bed during the mayority time. But, I had learning that is very important to be focus in other things, for example painting, reading or learning something different. Another thing that help me is "sal marina". For all the food is important to cook with that, every day. Also, if you feel bad, you could try eat a little bit of sal marina, and that help so much. I hope you will be better.
The only thing that I can do is pass on what has worked for in dealing with my POTS; not physically but emtionally. I write. I write a lot. I started a blog about a week after I was diagnosised and it has helped me so much. It helps me get things off my chest while letting my friends and family know my struggle and understand what POTS is and hos it affects my life. I also started writing a memior. I am about 20 pages in and that has also helped my unpack and digest what is going on in my life. I talk about all sorts of things. I talk about; my symptoms, what it is like having an illness while going to school full-time, how it has affected my school, work, and social life, etc. You name it, really. I think I have almost covered every topic. I have only been 'officially' diagnosised for a little over a year. I also started a Chronic Illness Awareness and Support group on my college campus so that I would be able to help support my fellow classmates on campus and also spread awareness in the community. I have learned some much from the other students that live with chronic illnesses. It is crazy, the amount of presepctive that I can learn from on human being. So, if you want talk ever. Let me know. Email; [email protected]
I was wondering if you have been dx with EDS. I have many symptoms which are related to EDS, divtericular disease, pain etc. I also have ME.
