ME sufferer

Severely ill

I have been suffering for two plus yrs and was after many doctors, specialists and blood tests, found me to be a victim of ME/CFS. I am a happily Married 48 yr old woman. Up to this point have been very energetic busy Mother of two daughters and Grandmother of one grandson and one granddaughter.

My symptoms came on rather quickly after being involved in a few very stressful situations. One of which was a rear end collision that forced me into shoulder surgery and lower lumbar surgery for caged fusion. I have suffered from Degenerative Bone disease for years and although painful, I was able to enjoy my life pretty well otherwise.
Prior to my diagnosis, I did a sleep study and found to be suffering from Obstructive and Un Obstructive Apnea in addition to not breathing for 10 seconds or more many times through the night. I was told at my local hospital where the study was conducted that they had not seen anyone like me. Normally they have to force several naps during wake hours to complete this study and I could not wake up! I would wake but without notice would fall right back out sitting straight up in a chair.

Other noted symptoms I have are, My skin is very dry. My hair comes out in clumps. Although I have had my eyes examined. I have visual disturbances that make me have to close my eyes instead of watching TV. Forget about any reading during these times. I have noticed big differences in my ability to think, process and even remember short term. I have a hard time finding words or use wrong words for what I am trying to say which is so unlike me normally! I miss being able to do laundry, clean house (never thought I'd say that!) walking the dog, baking, cooking, painting classes, time with my husband other than him taking care of me, etc. Generally, I feel sick with temp like episodes that cause me sweat profusely at an extent that have drenched clothes and bedding leaving me chilled to the bone. I live in a "dark" space as I cannot stand the bright lights.

I am basically going untreated now as my GP has referred me to a psychiatrist as he is unsure of what anti depressant I should be taking. I am hoping and am told they have patients with this condition and will possibly know what has worked on others that might help me gain some part of my life back.

My husband is very understanding and does practically everything now, so I cannot fault him for not knowing how to cook and find I can go days without eating anything. My family all live in other states and I don't know anyone here so my support system is only my husband. (again. I thank God for that!)

How do I deal with family that say things like "stop researching that...don't you think your just wallowing in it just the more?" How do you stop looking for answers? When is it time to give up? Why don't people that have known you all their lives...know you and what your suffering is REAL?? Why do doctors still say this doesn't exist and yet look at many of us ...completely destroyed by this disease.

Until more information is known and treatments found, I am bedridden most of the time, unable to make any plans knowing that my ability to do much of anything will knock me out for days. My attempt to read about any new findings and or treatments is limited at best. I am either fatigued too quickly, fall asleep with laptop on my lap or my vision is so blurred that I cannot go on. Some days are worse than others and I try and remember that there are many others that have it worse than I do.