Really, I'm not trying to be the Grinch!

Well, here we are again. I have been very blessed to have joined a support group through Strokenetwork.org, and am learning a ton from other's experiences and wisdom. Like most things, learning from someone who has actually experienced something is far more helpful in some ways than random theoretical knowledge.

A few people close to me have asked about not only "how I'm feeling", but also about particular things that are helpful or botnersome, if there are things I want to do but need help with, and even why the heck I sometimes suddenly just "hit the wall" and fall asleep. Hopefully this entry will answer some of those questions.

Now, anyone who knows me personally understands that I am usually the Queen of Multitasking. If I am watching a movie, I am also crocheting or catching up on emails. I very often have music playing while I am cleaning or cooking, and having laundry running through while baking bread is very common. Or it WAS common, anyway! One definite change my stroke has brought to me is that of singular thinking...multitasking is OUT.

Let's say for example, I am crocheting. I have crocheted most of my life and have written scores of original patterns. I can usually  figure out a stitch pattern just by looking closely at a finished piece. Nowadays, I have a two-pronged battle: my weak and uncoordinated left hand, and my thought process. While my hand will cooperate if I work slowly and take frequent breaks, my brain struggles with remembering patterns, counting stitches, and generally keeping the entire piece pattern in mind. Add to that any extra noise or distraction and I lose count and have

to pull a section out and do it again. Finding a mistake in the middle and figuring out a way around it is just not going to happen! So, while crocheting is a treasured activity to me and is now excellent therapy for my left hand as well as my eye/hand coordination, it can also be a source of great frustration as I learn patience to do something I used to do easily without thought.

About that "eye/hand coordination"...
I have a thermal coffee mug with a screw-on lid, perfect for avoiding spills as I carry my cup in the basket of my walker. Here's the catch: I have to stop and think about which way to turn the lid to screw it on. Duh, right? "Righty tighty, lefty loosey"! Yeah, well sometimes left and right directions, especially in a circular motion get lost somewhere and it takes a minute to get that lid on. In the meantime, avoiding spills of a hot liquid is obviously important, especially since my left hand is entirely numb so I would not know immediately if I had burned myself.

But forget about the coffee mug. What about other things that engage eye/hand coordination that we rarely give a second thought? Here is a short list of things that used to be a no-brainer but that now require real effort:

Plugging in a cell phone charger...
Filling a teapot without spilling water all over...
Pouring sugar onto a spoon to put into a cup of coffee...
Capping and uncapping anything with a screw-on lid (remember the coffee mug?)...
Reaching for things that are on the floor without losing balance and falling over...
Typing (Yes, this one is a killer for me)...
Tying a shoelace, or basically tying anything into a bow...
Using a handheld pencil sharpener...
Cutting anything with a sharp knife (same caution as with hot water)...
Peeling an orange (who knew this required thought??)...
Buckling a bra (not happening at all)...
Navigating a stairway...
Reading regular sized type...

There are undoubtedly more things that could go on this list, but you get the idea.

Those are some of the ordinary day-to-day challenges, so let's move on to another inevitable event: shopping! (Shudder) Doesn't everyone want to get out of the house when they have been cooped up for a while? Of course! Especially this time of year, it can be a lot of fun being out and about, seeing the sights, and  running errands. At least it always was before. Nowadays there are a few challenges I had not foreseen but am learning to compensate for.

First off, the concept of "sensory overload". We are literally bombarded with sights, sounds, smells, different surfaces for walking on, temperature fluctuations, and various versions of hubbub. Usually these are taken in stride, processed as our brain perceives them and either given attention if necessary or ignored as we pass by. But what happens when the brain cannot easily filter all that stimuli can be a pretty intense experience, and not in a fun way!

Consider the average grocery market. Even during a non-holiday season, they are busy places...during the holidays they become a constant assault on the senses. Ordinarily, I would perceive all this commotion as just a "really busy store" but now it can lead to headaches, fatigue, anxiety, nausea, and an all-out desire to bolt for the door if I could only walk or run without assistance. For now, I limit my excursions to such places because the exhaustion that follows is too high a price to pay for a frivolous trip out. When I DO go out, sunglasses and earplugs are my friends! Dimming the lights and reducing the noise helps a lot, and I try to avoid getting stuck in crowds. Too much bustling and general movement around me is overwhelming, so staying to the periphery is also helpful.

Speaking of periphery, let's discuss vision for a minute. I experienced an ischemic stroke in the right side of my brain, so the left side of my body is affected. My vision is affected toward the left side of my visual field. This means that I lost the left-most portion of my vision...the far outside in my left eye, and the far inside in my right eye. Neither of these are horrific losses except that I already had a peripheral vision loss in my right eye unrelated to the stroke, so the vision in that eye is now reduced to one very small area in the center. Imagine looking down a long, dark corridor to a small open doorway in the middle.

While adjusting to the vision reducton is a little challenging, almost more troublesome is the utter lack of depth perception. Our understanding of our presence in a given space is based on the relation of other objects around us inside that space. So, sitting in a room that also contains a sofa, a chair, a television, a bookcase, and a coffee table, we perceive the entire room and our place in it based on the relation of all of those objects. Even the size of the room is hinted at by the size of the objects in it and how close they are to each other. Now imagine that your perception of those sizes and distances is warped. You cannot determine if the couch is near or far away, therefore it's size means nothing (Usually the further away an object is, the smaller it appears). The coffee mug on the table might be only a few feet or actually several feet away, and misjudging that distance could result in knocking the mug over and burning oneself with hot liquid. Now add a few more people to the room. People usually move eventually, so you could have three moving people in a room full of objects. And they might be talking, adding the distraction of sound to the equation. Got that? Ok, take it one step further and imagine that room being an entire commercial store full of vastly more items, sounds, lights, and moving objects...and you can't tell how near or far any of them are in relation to you, or exactly where the sounds you hear are coming from.

Still with me? I will add just one more thing, and that is the complete inability to

leave the scene alone. So now you are overwhelmed, need to find a quiet space without bright lights, and unfortunately you might not be physically able to leave on your own without assistance. That feeling of being somewhat helpless in an overwhelming g situation, unless you truly enjoy a lifestyle of being molly-coddled (definitely NOT me!), can be an exhausting trial. Bear in mind, that helpless feeling pervades many ordinary daily activities which definitely leads to times of emotional slumps, discouragement, and sadness for me. Everyone else I have asked about this have shared similar emotional difficulties at various points in their recovery. One new friend shared with me that she had a particularly hard day recently and a family member rather flippantly suggested she go soak in a hot bath and "chill out". She said she almost cried as she thought about the effort it would take to even get into the bath, as well as the fact that she would still need help getting out of the tub at the end. She was already exhausted and adding more fatigue seemed simply intolerable. Sometimes even the soothing comforts we remember enjoying in the recent past can be more work than solace.

Speaking of exhaustion, I will wrap up with the subject of fatigue. We have all experienced the awesome feeling of tiredness resulting from hard work, perhaps studying for long hours as a student, or the deep fatigue following childbirth or a serious illness.  Stroke, like any brain injury, carries what for me has been a feeling of fatigue unlike any I have ever known. As the brain itself has been injured, it makes sense that fatigue will occur as cells are rejuvenated, inflammation subsides, and nerves begin to connect and function again. As we talked about the sensory stimulation constantly occurring, there is also fatigue associated with that overstimulation. Add to that the extra physical effort required for tasks such as walking, sitting/standing, and generally moving about during the course of a day, and you have a recipe for one extremely draining daily experience. Throw in daily physical therapy exercises and the mental fatigue of figuring out new ways to do all the thingsthat need to be done, and the proverbial "wall" looms large just waiting to be slammed into. The fact that it makes sense that this fatigue is normal does not make it any less troublesome to deal with every day.

Why am I sharing all of this? Quite simply, things we don't understand tend to be either frightening, irritating, or some combination of the two. If you are a stroke survivor, you could add many of your own thoughts to mine here and you understand the challenges I describe. If you have a loved one recovering from a stroke, you have probably been irritated as a chicken with fleas by things that "shouldn't be a big deal" or even by the moodiness that so easily befalls your loved one as they navigate these waters. It is extremely difficult on both sides.

Imagine receiving a great big

model ship kit as a gift. What fun it will be to put it together! Until someone dumps all the tiny pieces out into a big pile on the floor, hands you the glue, then walks away...taking with them the picture of what the ship is supposed to look like as well as the directions for assembling it! You shake your head and stare at the pile in utter confusion. This is what recovering from a stroke can feel like at times. If your loved one is a stroke survivor, remember that YOU still have access to that finished picture and the directions for assembling that ship...your loved one does not. They are not trying to be difficult or unkind, they may very well be overwhelmed with the immensity of the task before them. None of us can tell anyone else "how to do this stroke recovery thing" from EITHER side. But a little understanding goes a long way...I am not trying to be the Grinch, really!

As I mentioned above, I am so blessed to have great support from family, friends, and a wonderful stroke support organization. I am grateful to all of you who are following this journey with me, and I welcome your comments, questions, and suggestions, either here on this entry or send me a private email.

Onward and upward,
Lorrie

"Be kind, for everyone you meet is fighting a hard battle."