The thing about any loss is it has up days and down.

I love it when I get to blog about my successes and good days.  I enjoy sharing my experiences and joys in learning new things and facing this disability head on.  Then I have the down days that are totally normal with this new reality.  But I have found that I am more hesitant to share about those down days and feel like I am being a downer.  However, the reality is that this is the reality of a loss by medical condition.  You have successes and good days, but you also have struggles and less than glorious days.  It is what it is.  I am trying to push through and share more of the down days as well, because the reality is that if people are encouraged by what I write, they will also be encouraged that they too are not alone on this journey and that the ups and downs are normal.  

Apparently I am on a roller coaster and no one bothered to tell me.

Depression is an insidious condition.  Sometimes to the outsider it can and I emphasize can be obvious.  But a lot of times it isn't that easy to see.  A lot of the reason for not being able to pick up on it is that we all have this thing in us called pride that rises up and says “we got this, we are good”.   It isn't until things start to pile up and we get the sense that we are drowning and maybe, just maybe we need some help. Also there is a point of no return, because of a lot of life stresses you just can’t get back no matter how hard you try. Most of the time eating right, exercising, sleeping well, and in general keeping the stress at bay one can overcome a minor depression or the beginnings of one.  However, when it goes too far you cannot get back without help. Trust me, I have tried this before and failed miserably.

I have struggled with depression before, back when in a two year period:  my father died, seven different family members and friends died, I lost my job, had my first child, bought and sold our first house, and then moved out of state.  I guess those were too many stresses lined up together to actually have a chance at making it.  I truly believe in the adage “If life gives you lemons, make lemonade”, but if you find yourself making brewery size volumes of lemonade, it is time to get some help.

I have known for about almost two years now that I have been on the brink of depression.  With the loss of my vision in 2011, I lost so much more than just my vision.  My ability to drive has been greatly restricted, what my degree and training are in I won’t be able to return to (ever), I can’t read “normally”, I can’t sight read music any more, I can’t ride my bike by myself, and the list goes on.  I had a significant visual loss, but the collateral damage from that loss is what has amped up the stress in my life. 

Most folks get to go about life in their “normal” way and I have to have multiple contingency plans taking into consideration all kinds of circumstances that are beyond my control just to get through one day.  I have been on a steep learning curve adapting to low vision and it has just gotten the better of me. I got fatigued and lost my ability to hang on.  I do so much to stay on top of all my training and rehab, but the mental gymnastics of it all has finally caught up with me.  I actually was wondering if the fact everything was done that I finally relaxed and wasn't in “fight/flight” mode any more that now the depression has hit hard.

I am going back onto anti-depressants, which I know work from the past and I have to level my pride of “I can do this myself”.  What is funny is that I have been able to ask for help in every other area of my life, but here I have been mentally treading water for almost two years and have finally gotten to where I either drown or receive help.

If you have suffered significant loss, keep your eyes open for the signs of depression.  A lot of the symptoms aren't things we would normally associate with depression.  Just because you don’t feel sad all the time does NOT mean there isn't anything wrong. My biggest symptoms are: wanting to sleep more and more, irritability, inability to focus and concentrating, not wanting to do anything besides just the bare minimum (no hobbies), and this constant feeling like doing life is like walking through quicksand.  Also once I get past a certain point it doesn't matter what I do any relief is very momentary and it is obvious that I need help.  Honestly, by just asking for help and admitting I can’t keep this up has lifted an enormous burden off my shoulders.

The world is going round and round and round and round.

Every so often I have bouts of vertigo.  Vertigo is the sensation of spinning when in fact you are not.  It can be slight as dizziness and it can be debilitating.   I have luckily only had a couple of bouts each year but a few weeks ago I had one doozy of an  episode.

I had seen my ENT on more than one occasion for vertigo but we were never able to replicate it (thank God!).  However, after this most recent episode the doctor ordered a “balance test”.  I went in and they put these glasses on me and made me look at lights going up and down, left to right, slow, and fast.  Then they blew cold and warm air into each of my ears while I was lying down.  On my right side the air, both cold and warm caused the sensation of spinning and then on my left absolutely nothing. I asked if this was “normal” or was it my issue.  The doctor informed me it was my issue. (Surprise surprise)

The good news: we know why I have vertigo.  The bad news:  it is yet again caused by my vision loss two years ago.  I asked if it could be due to vision issues and she said “not usually”.  Then I said, “Let me explain, I have no center vision in my left eye and my right eye’s center vision because significantly obstructed two years ago.” To which she so politely replied “Yup that would do it”.

I will now have to work with a PT who specializes in vestibular issues. My core balance is off and I am leaning to the right so we’ll need to correct that so that the vertigo will resolve. I am still grateful we have good health insurance and that the PT copays will come out of the flexible spending account. However, I am still struggling with feeling that I am just done with all of it and I want a break for a while. As a matter of fact I would love to have just one “normal” day where I don’t have to fight so hard to overcome my disability 24/7.  Thank God sleeping is still enjoyable. J

When one is floating on the river of denial, do NOT throw them off their raft.

I went to the retina specialist today.  Scans look good. There are no bleeders. Yippee!  Then I cautiously ask/state “I am getting an injection today?.”  To which the reply “I thought we had this conversation”, “I am not comfortable letting you go without treatment”.  The only way I get to go 12 weeks between appointments is to agree to an injection.  Which at this stage of the game, I would rather not visit the Eye Center any more frequently than is absolutely necessary. Then I ignorantly asked--basically I really should have just shut up here and not dug deeper, but nooooo I had to ask the next question on my mind--“So how long will I be getting injections every 12 weeks?”  Seriously, I am a sucker for punishment.  The answer came back “Until the drug stops working”.  Oh and did I stop there, no I kept going because I was on a roll.  Well that brings me to the question “Does it stop working? And I don’t think I want to know the answer to that.”  The answer came, despite my saying I don’t want to know. “Yes, Avastin eventually stops working, regardless of your condition that you have. Avastin eventually stops working for ALL patients.  Seriously? HELLO? Did you not get the “I really don’t want to know the answer” statement?  Wow, way to pop my bubble of denial.

I guess this is where I get to practice everything I have learned over the last several years.  I have learned to live only in today and not worry about tomorrow.  I can’t predict the future. I can’t make decisions based on future ‘possibilities’. All I can do is be grateful that the drug works today, that I have the vision I have, and to live my life to the absolute fullest each day regardless of what the future holds.  Carpe Diem!  Ok, Carpe Diem tomorrow, I am tired and my eye hurts. J

My wings have arrived!

When I started this blog I had no idea that I would consider cane training let alone embrace it wholeheartedly and love it.  However, since the beginning of this eye disease I have had fear, anxiety, and uncertainty.  I did not understand that cane training would make those fears, anxieties and uncertainties disappear or become more acceptable.

When I go out walking with my cane or navigate a place I have frequented often with my cane, I now have confidence, peace, and acceptance.  I literally feel like I have wings.  Can I see any better? No. But now that I have the cane I can look up while walking.  I can walk faster and actually get a cardio workout. I can see (in general terms, not details) people coming down the path and when I get close enough I can smile and say hello, forget the fact that I can’t see their face or identify them.  I have spent the last two years staring down at my feet afraid of tripping, running into someone, or some other catastrophic event because I can’t see well.  I have shied away from getting outside and doing much of anything because it is too exhausting to manage all the fear and anxiety.  But now I want to go out rain or shine, sleet or snow, warm or cold because with my cane I am NOT afraid.  It doesn’t “see” for me but it gives me enough information to process what is critical quickly and be o.k. 

There are so many things I didn’t think of nor imagine the cane doing for me.  For example, when I am out walking and the sun is starting to dip in the sky and you get that bright light where everything is completely washed out and difficult to see even as a normal sighted person, my cane helps.  If it starts to get dark and I am out and about walking I don’t need to rush home because vision is going to decline as the light does, my cane helps.  If I am in a new location with stairs, tile floors, obstacles I am not familiar with, the cane helps.  And most importantly when my brain is just tired of all the visual inputs I can close my eyes and continue to walk and my cane helps. 

I have missed two years’ worth of activities around me because I was so busy staring at the floor. I am looking forward to observing, to the best of my ability, all that is around me. If you have an eye condition that causes low vision, no matter how low, I would recommend you try it.  You can always do an evaluation and be assessed on whether it would help you or not, but take it from me you’ll be glad to just have the knowledge of what it “can” do for you.  I thought of about 10% of the things the cane could help me with and I had no idea of the 90% it would give me.  This has been by far the greatest gift ever.

Freedom, it comes in the most unusual places

I have been writing lately a lot about cane training.  It is the last thing that I have done to complete all my adaptive training for this new reality called “low vision”.  There are a lot of different emotions that come with low vision: grief, fear, frustration, exhaustion, to name a few.  When I started the training I thought “this will be great for once in a while” but instead I am looking forward to using it a lot more frequently than that.  It has given me a freedom that I never expected.  The very object that is a picture of my disability, a symbol to the rest of the world that “hey this person has a vision issue” has become the one thing to bring me the most freedom.  Low vision is a very hard concept to explain.  People get “blindness” but low vision or vision that changes based on light, weather, conditions, locations, etc. is a complete loss on most folks.  They “get it” in the moment you are explaining and then they’ll turn to you at a coffee shop and point to the menu board and ask “what are you going to have”? They are not clueless; they just don’t live in my eyes.  On the outside I look and behave “normal” but when you cross into those areas that are outside of my ability to “see” there are no obvious cues until I say something or one observes my struggle. (Ask my kids about a game I play on the computer where I have to use the mouse to click on a beetle…they think it is amusing to watch, because it makes my vision issue really apparent…we’ll pray for them later.) 

I have been out cane training on multiple occasions.  It has given me so much more than just comfort when the lighting is bad.  It has allowed me to look up and try to interpret the rest of my environment while affording me the luxury of “feeling” what is at my feet so I don’t trip or run into something.  It has been wonderful.  I finished my training a little over a week ago and on that day I ordered my cane.  It will be delivered next week.  No big deal right?  But I am actually feeling like Linus without his blanket.  My security is gone.  It is the most bizarre experience.  I was griping about going out walking in this miserable cold and I would have to psyche myself out for staying out 20 minutes and now I don’t have the cane and I am pining to go out walking.  What up?!  The one cool thing about the cane is even if people question why I have it when they can’t see any outward signs of my issues, if I do trip or run into something there is an instance “Oh, now I see why she has the cane.”  However, if you are particularly snarky I might beat you with it. J  

White Cane Training Part 2

After a couple of days out with the cane I got to walk with the cane and a blind fold.  I wasn't too freaked out because the trainer was there and I know that they won’t let me walk out into traffic.  I don’t know what I expected from the experience, but I can tell you this it was awesome.  Immediately, your other senses get amplified.  You really “feel” the ground beneath your feet and the cane.  You “hear” traffic and can determine direction and whether it is going fast or not. You “feel” the warmth of the sun when you step out of the shadows. You “smell” the vegetation. And most of all, you are not being bombarded by a gazillion visual messages that you may or may not interpret correctly.  All the things I normally fear; tripping, falling, or crashing into something is gone.  Since I can’t see at all, there is no anticipating an obstacle. I can’t see any of the things that cause me to question my usable vision. Having all my other senses up is actually comforting.  Feeling the breeze in my hair and the warmth on my face brings me comfort, not fear.  How amazing is it that I can walk down the block with a blind fold and feel comfort.  That may change when I am out by myself but we’ll cross that bridge when we get to it, both literally and metaphorically.