I have been really battling with the current status of my
eyes. Nothing much has changed, accept
maybe things continue to be irritatingly unstable and all the work it takes to “rehabilitate”
is overwhelming and exhausting. I
realized this morning it feels a lot like having the first layer of all your
skin peeled off. I know; gross right? (Not that I have ever experienced that
personally, but I could visualize it). Seriously,
that is how it feels. I feel raw and
sensitive. I want to be left alone and
just hide out at home. I want to not FEEL this in any way shape or form. What I have decided is that I am no longer going
to try to push through the feeling
and just protect myself the best I can until this whole nightmare settles down
some and I can heal. I’ll be at the
grocery store and on the verge of tears for no apparent reason. This last
father’s day just plain hurt, even though my father died some 16 years
ago. The skin thing, it feels like all
the things that life normally throws at me just plain sting. I don’t want to be anywhere around people
because someone somewhere is going to ask that dreaded question “How are you
doing?” It is innocent and genuinely compassionate but when you feel as raw as
I do there is no superficial answer that I can lend that won’t be very obvious
to the observer I am a flat out liar.
However, I also don’t want to burst into tears either. I came up with this skin analogy because I
keep being just “in my life” and things just affect me much more than usual,
like my thick skin isn’t there. It actually
reminds me a LOT of how I felt right after my dad’s death from cancer. I’d be at the store, minding my own business
and the music over the speakers would cut through the comfortable fog I would
be wandering in and hit me head-on. Then I would be standing in the produce
aisle crying thinking I am completely losing it, when in fact I am simply GRIEVING a loss.
However, now I am grieving the previous normalcy of my life. I am hurting
over all I have lost with the loss of my vision and wondering when if EVER I am
going to feel normal again. I know that it will get better; I have been
through grief many times over. I just
wish it would hurry up already!
I totally relate to what you are talking about!! Well said I might add. When I first became diagnosed with POHS it curshed me for a brief time, when my "good" eye compensated for my vision lost in my "bad" eye I was ok again. Life went on as ussual. If you call getting a divorce and becoming a single mother of 2 young children normal. I started having the time of my life! Everything was going so great! My older sister moved in with me and my 2 kids and we became a close nit family. Then it was time for her to get a place for her family and left me alone with my kids agian, which surprisingly I was able to haandle. I was an LPN who had started going to nursing school with the dream of soon after graduating going on for my associates,bachelors degree in nursing, but due to the divorce that took a back seat. I ws finally at a place in my life I could afford to go back to school and still have time to be a single mother of a 6 & 3 year old. I enrolled in an LPN to RN program May 2005. I worked in a nursing home and was finding that the book that we used to tell us what drugs to give to our residents was fuzzy and then slowly more and more things were getting fuzzy. It is getting closer and closter time to start school. Memorial Day Holiday it struck me what was going on with my vision! Here I am looking at life through a glass of water, again! I became sick to my stomache, thinking God why now? Why agian? I got in with my RS on MEMRORIAL DAy!! He was that concernced for me! Only to crush my dreams and give me more to greive on memorial day. My "good" eye had become active! This is when I started feeling just as you describe above. I keep my head up and my doubts , fears, and worries to myself.
ReplyDeleteI did meet my now husband the June after the "new" activation. He feel in love with me with my "impairment" so that gave me hope that I am not totally worthless. I thought what can I possibly do to make a living that will reward me like being a nurse did? I obviously couldn't work at that anylonger. Even though I gave it a try and the nursing home I was working for worked through it with me. I had visual aides, shortend patient lists, etc. but I got to thinking, what if I hurt someone with a med error? This is so easy to do with normal vision let alone 20/200 and 20/400. would I want some one wiht that vison taking care of me or some one I loved? The answer to that was no! So I decided to explore other career paths. Nothing seemed to give me the satisfaction and pride that being a "nurse" did. As a matter of fact, in 2010 I worked in a place I wouldn't recommend to my worst enemy! This position made my vsion even worse! My other eye had become reacitved with the stress of this terrible job. Now I had both eyes leaking without any hope of remission. I quit the job, getting further depressed and feeling useless, and a waste. For months I was getting worse and worse, until one of my sisters who works in a small office gave me a call and said that her boss was looking for some more help would I be interested. What I forgot to mention was that after I quit my other job, I applied for so many other jobs with out any success of being hired. It all went good until I mentioned vision impairment. Then I could feel the tension in the air like cotton! This helped to increase my depression. Any way, back to the offer my sister offered me. I thought at least I am getting interviewing skills!! I was going through a program that my state has called OVR that helps visually impaired/blind persons g back to work. I asked to her to explain my situation to her boss, I didn't want to get my hopes up and have them crashing in on me again. She said that he was already aware of it. So, I interviewed with him. I now work for him and found my nitch! He is a wonderful person! Through this job and the support of my family I was able to finally over come my depression with my vison loss and now take it as a blessing! If I still had my vison and had gone on to school as a nurse, I would more than likely be working weekends, nights etc. I work from home if i want to now, I can work as little hours as I want. Had the plan I planned for my visual life worked out, I wouldn't have had the chance to be a part of my children's lives as much as I have through my impaired visual life! It took me a few years, but I did get through that greief as you will too. I am sure you know it takes time and the amount of time depends on you. I still have my "dream" of a "cure"/better treatment than injections every 4 weeks. I do know that with change comes something beautiful!
ReplyDeleteThe above posts are from Sonya Purdy. I found your blog through the histo support site on FB.
ReplyDeleteThank you so much for sharing. You have really spoken to an area that I have been struggling with immensely. I know that there is a future, I just don't know what it is now and I am still in the "discovery" phase. I used to work in the biotech field and my background is molecular biology...and needless to say I won't be returning there. But is awesome to hear from someone who has gone before me with this condition that has employment and it has turned out better than could have been expected. THANK YOU!
DeleteI am glad I could be of help! I remember all to well how I felt going through what your going through right now. If you ever want to talk or anything my email address is sonyaprudy@hotmail.com I wish you all the luck in finding your "nitch".
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