My Newest Life Bane

Almost three years ago I was diagnosed with Multiple Sclerosis....
The events leading up to that day were filled with anxiety and worry as anyone who has been diagnosed with something like this or worse can tell you. In a way it was no real surprise, but then again it is always like being hit it the face with a bucket of ice water. 
Never really having been an overly healthy person you sometimes to expect such things. Besides there is usually a quick and simple fix...right?
Before the actual diagnosis the Doctors did not find any lesions and they thought it was a couple other things. I have been in the medical field for most of my life and have a bad habit of self diagnosing, so I already knew.
I had left my chosen profession as a Certified Nurses Aide for a few years, but at the time had recently gone back into it. The jobs I did were always hard on the body however. Once I was back into the lifting and caring for others I started having the symptoms big time. Not at first...the most annoying was the burning in my feet and shoulders. Those had been there for a long time, because of the other jobs held that required me to be on my feet all the time and required a lot of lifting, no big deal. Then the tingling and numbness in my hands started, but the worst was when I would look down to stretch my neck was the sensation that I had numbness from the waist down. Also the feeling of things crawling on me or under my skin was almost unbearable!
The first symptoms had shown up in or around 2004 as chronic fatigue. I was diagnosed with sleep apnea as a result of a sleep study and then when the CPAP did not help with that the Doctors added Narcolepsy to the diagnosis. I was so tired all the time that an atomic bomb would not have woken me up. It took a few more years for the lesions to appear but as I said I knew it was something more.

Needless to say this has been a very difficult thing to accept, not because I wasn't't expecting it, because I knew it was coming. It has been hard to deal with because you can't do the work I have done, and though they tried they couldn't't find anything more for me to do. On top of the MS, I have a spur in my neck and also two bulging vertebrae. I am trying to find ways to deal with the inability to work, and accepting what may lie ahead as the disease progresses. I am only in the beginning stages according to the Neurologist, but as we know who have the disease it is a very unpredictable illness. In all reality I believe I had it long before I was ever diagnosed as I have other things that tie in with it. Without the lesions though the Doctors don't want to accept that, I have even been more or less called a hypochondriac. 

It is so difficult because family and friends don't want to talk about it or accept what may happen. If you don't look sick, then no one wants to accept that you are. No body knows what anyone with an illness like this goes through on a daily basis. They don't realize how hurtful the remarks they make trying to be funny truly are. I get told I am lazy,or to get out and volunteer in places like I used to work. I am far from lazy,there are so many things I want to do, the trouble is by the time I get up and dressed on a good day I am so sapped that I have to rest before I can do anything. Then if I start something I want and need to finish it, if I get over heated that won't happen then I will be upset and get sapped because of my emotional state. As for volunteering..if I were to do that then I would want to go back to work. People are all different yet those around us don't seem to understand that, or realize it unless they have to deal with it.

There are so many things I want to do before I am not able, but then people decide to treat you as if you are fragile. Me personally I have no one to really get out to do things with. Yet nobody wants me to do them alone. I live in a rural area and in a state that offers little help, my husband has been promising me we would move for three years. It has not happened yet, but then when it is something he does not really want what is one to expect? He is punishing me for something that happened yrs ago, I moved back home to raise my kids where family could help, since he was always working. He is away a lot and it is just frustrating because I feel trapped and alone so much of the time. I love him and he tries to support me and in ways he does, just not where it counts. I won't give in to this illness though and in the end I will do what I need to do. 
bluetatoo19712000 bluetatoo19712000
36-40, F
1 Response May 5, 2012

I'm so sorry for all of your suffering and the insensitivity of people and their tactless comments. It sounds like you really need some support...not just online, but real human contact. You mentioned that you moved back to your hometown, then presumably returned. Is moving back home again a possibility? BTW, did you have to have a lumbar puncture to validate the second MRI? Well, I wish only the best for you, and hope that you can find a good support system of people.

Thank you for your kind words. Tactlessness and insensitivity are things I have learned to deal with in life. I learned the hard way that people just don't 1.practice what they preach and 2. treat others the way they want to be treated.
I do live in my hometown at this time, and have a lot of family and friends here. Sadly some of my close friends have moved away though.
No I have never had the lumbar puncture done. I did have another test done called an EMG I think. It is a test that checks the health of the muscles and the nerves that control the muscles.
I don't know if I would have agreed to a lumbar puncture if they had recommended it as I have a fear of needles or surgery on or around the spine.