C.D. Journals – April 6, 2022

It’s been awhile since I shared anything about my journey with Cervical Dystonia, so I thought I’d pop in with a few words because today is one of those days that I think a lot of us experience, some more than others maybe. We talk a lot about the physical aspects of this disorder, with good reason, because they’re dramatic. Dystonia turns us into painful contortionists and the domino effect on connecting muscles is mind-blowing.

The mental game is no joke either though, and it is a head game. There’s the whole grieving process when we’re first diagnosed. Then, for me at least, my emotions ran the gamut from depression to determination. I was diagnosed a little over three years ago and it has been a roller coaster ride. Some days I’m at peace and coping with it, and other days I’m dealing with anxiety and depression. A lot of days I’m angry and frustrated very often throughout the day.

Then there’s the head trips I take myself on. I think that I should be able to do something I’m failing at and feel guilty for it and have to remind myself that I am now “differently abled” and need to cut myself some slack. Or, I need to run an errand and the thought of going out in public makes me feel uneasy and I have to psych myself up just to go to the grocery store. In fact, I don’t usually go grocery shopping by myself anymore. A small example of my uneasiness: my husband and I were in the grocery store recently and he suggested that I go find something we needed in the produce section while he went in search of something in another area of the store. That meant that I had to walk through the store by myself. I hesitated, feeling a moment of anxiety, then agreed.

I have to hold my head when I am walking so that I can see where I’m going (walking with your head twisted to the side makes it difficult to see clearly ahead of you). With the way I hold my head, I look like I have an elbow growing out the side of it. I feel very self-conscious, and I mean VERY. I usually deal with this one of two ways; I completely ignore my feelings and everyone around me and laser-focus on the task at hand, or I cheer myself on the whole way and smile at anyone who stares at me – depending on my mood, I guess.

I don’t consider myself a particularly strong person, emotionally. At the same time I’m a fighter and don’t like adversity to get the best of me. I don’t like limitations and usually do my best to break them, but at the same time when I encounter an unpassable obstacle I won’t beat my head against it until I have a headache. I will either look for a way around or choose a different path. I try to rest when I really need to rest and push through when I think I can do so without making things worse.

It’s a constant battle physically, mentally, and emotionally. Some days I’m just tired of the struggle – so tired. Today is one of those days. I don’t want to leave my comfy bedroom chair where I can sit and situate my head so that it will be straight and mostly still. I can pretend that I’m normal again. I am typing this right now with both hands and my head looking straight at the monitor. I can do this because when my head tries to turn I can push it into the back of the chair and stop the turn. My head is mostly pressed into the back of the chair, but at least I don’t have to hold it with my hands. Small victories, I’ll take them!

You know, life doesn’t stop because we have challenges no matter how debilitating or life-altering. I can let this disorder rob me of my quality of life and my joy, or I can not. Most of the time I choose the latter. Even when I choose to watch life go by for awhile I know that I can jump back in when I feel stronger and ready for more of the rollercoaster. Life doesn’t stop, but we can get off and take breaks now and then, and it’s okay. It’s when we completely give up that we’re in trouble and I personally am not ready to completely throw in the towel. I might be getting close, but not yet. And really, that’s up to God anyway.

As long as I have breath in me and my Jesus keeps strengthening me, I’ll keep fighting the good fight – taking breaks when I need to be refreshed. It’s how it is with us humans. We are not all-powerful and endlessly energetic. Especially those with chronic diseases and disorders. Our tanks run low more quickly than completely healthy, able-bodied people. You know, 12-year olds. Hahaha! I’m kidding. There are 70-year olds who could give those 12-year olds a run for their money. I know a couple.

Ok. I’m feeling a little better now. Sometimes it helps to just talk things out a bit. Thanks for listening. I appreciate you! I think I’m about ready to put my pads on and get back in the game. 🙂

Blessings!
Brenda

C.D. Journals – December 29, 2021

This is exhausting! Fighting my own body every waking hour of every day just gets so draining. So many with this affliction spend most of their days in bed and I can certainly understand that. For me, that would be even more devastating than the disorder itself.

I already struggle with melancholy (I don’t want to say “depression” because I don’t think that’s what it is. I just battle chronic sadness.). To completely give up and not even get out of bed would probably lead to depression. I have been there before and it is not even a little bit fun.

So, I get out of bed every day and do SOMETHING. Actually, I do quite a lot really. I take care of my dog. I take care of myself. I take care of my husband as much as possible, but really he takes more care of me. I do laundry and light housecleaning. I go for walks. I engage in as many of my hobbies as possible and in between all of that I rest.

The resting is the tricky part. First off, I am very task oriented and always need to be doing something so stopping to rest is something I have to make myself do. Well, truthfully, when my neck and back are on fire it’s not so hard to stop. But, if I’m not in significant pain, then it’s definitely hard to make myself stop. I also know that if I don’t rest there WILL be significant pain. I say significant because there is always pain in varying degrees.

Another tricky part of resting is ending it. Once I sit down or lie down and take the pressure off my constantly straining muscles, it can be difficult to get up and start the battle again. So, I have to make myself stop and I have to make myself start again. In between those two things I have to fight my body to make it do what I want it to do however I can. Can you see where the exhaustion comes in?

Add to all that the holidays! I am Mom and Grandma. That’s a lot of pressure at holiday time from my perspective. My grandma always made the holidays extra special when I was a kid and I am driven to do the same for my grandkids. I know it needs to change, but my heart just doesn’t want it to. So, I push beyond my limits baking, wrapping, cleaning, decorating – all the things we women do during the holidays. The only difference now is that I start in October. I’m thinking of starting even earlier next year.

In general, I do the best I can with where I am. Some days I do even better than I normally can because I’m stubborn. I’m also SOMETIMES willing to suffer the consequences depending on how important it is to me and how I’m feeling at the moment. Apparently, making sure my grands have several different types of cookies, candy, fudge, and a cake I’ve never made before for Christmas Eve is worth doing very little for the few days after. I think I must be a little crazy! I’m doing much less for New Year’s.

If you’re reading this and you have Dystonia, or any other type of movement disorder, I would love to hear how the holidays went for you; what you were able to accomplish and how you coped.

Many blessings in the new year! 😊💕

Strength

My devotion this morning tasked me with writing about a time when God strengthened me to handle something that seemed impossible to me at the time. I have to chuckle because that time is every day.

Every day that I live with Cervical Dystonia, and every day as I grow older, God strengthens me to handle it. Some days I don’t even want to try. I’m tired of the pain, I’m tired of the struggle, I’m just plain tired. I am plagued by the voices in my head telling me to “Get up. You’re not hurt.” (Dad) and “it’s mind over matter.” (Grandma). These same voices tell me that I have to be productive. I have to DO something today. But, what if I really don’t?

I think one of the ways that God strengthens me is that He lets me cry, He lets me rest, and He tells me it’s okay. He gave me an EXTREMELY supportive and loving husband who does the same. God also reminds me of all the good that is in my life, and how much I enjoy life; my family, my friends, exercising my gifts and talents. He has given me SO much to enjoy and appreciate and I don’t want to let any of it go to waste.

I remember that when I was little I hated taking naps because I was afraid that I would miss out on something. I never wanted to be left out of the fun! I still kind of feel that way. I am definitely more appreciative of naps now, but I still don’t like to miss out on any of the fun. God made me with this innate desire to experience and enjoy as much of life as I possibly can. He made a lot of people that way, maybe even all of us and some of us have just learned to ignore it. It’s a fire in me though, and I think it’s a lot of what keeps me going. When I’m done crying, when I’m done resting, I go at it again. Sometimes, its’ not for very long before I need to rest again, but I have never given up completely and as long as I have Jesus in my corner, I won’t. The biggest way He strengthens me is by being in my life – by BEING my strength!

😊💕

C.D. Journals – September 13, 2021

Three years ago this summer I was diagnosed with Cervical Dystonia. I have learned a lot since then; about the disorder, about myself, about others who are going through the same thing. The disorder has progressed since the initial diagnosis and I can now no longer hold my head straight without the assistance of the back of a seat and/or my hands. It is a huge blessing when I can sit somewhere and have the back of the seat to support my head, even though it’s usually just for a few minutes at a time. I almost feel normal for those few minutes.

I am part of a Cervical Dystonia Facebook group where I have found answers, support, and encouragement. I have learned that C.D. has many different faces, and each person’s manifestation of the disorder can be different. There are others, like me, whose heads rotate and they can’t hold them straight. Some rotate left, some rotate right. Others have issues with tremors, some with tilting. Some have a lot of pain, some have a little pain. Some use Botox injections for relief and some are not helped by it at all. We have ALL, however, had to deal with the loss of our former lives.

We all have issues and challenges. Some require more adjusting than others and some have a more devastating affect on quality of life. When a challenge causes us to hide from the world, I’d say that’s a big quality of life affect. When we can no longer do things that we love, or even things that we’re just used to doing like brushing our teeth or doing dishes. THAT is a big quality of life affect. C.D. affects EVERYTHING! Especially when you need to use one hand to hold your head, otherwise you’re doing the thing with your head twisted hard to one side and using your peripheral vision. That hurts after a few minutes!

There are actually lots of ways to adjust things so that you’re just doing them differently, and other things not so much. For example, I’ve learned to tear the stems off of spinach leaves and crack eggs with one hand. But, folding and hanging laundry, and doing knife work in the kitchen are still very difficult. When I really need both hands, I rotate my body so I’m working on the left side of it (the way my head rotates) instead of in front. I cant maintain that for very long though. I have also learned to give myself grace, do things in stages, and rest when I need to. Sometimes I just want to stop because I’m uncomfortable – not in pain – just uncomfortable. Those are the times when I push through a little. I go a little longer with what I’m doing if I’m not done.

I have to say that I am incredibly blessed! I have an amazing, supportive husband who has a good job. I don’t have to work outside of home, and he helps me with everything! I have heard too many terrible stories of spouses who have left because they couldn’t or didn’t want to deal with a disabled partner. C.D.ers who are single moms or mothers of young children. My heart goes out to these fellow sojourners SO much! I know that circumstances can change in the blink of an eye, obviously. I’m sure that I will find myself in a different situation at some time. Different how, I have no idea, but the one constant in life is change.

I am so thankful that I have Jesus no matter what. I believe that He will always see me through, one way or another. I honestly don’t know how I would handle all of this at this point in my life without Him. Before becoming a Christian, when life got overwhelming I would just party more; drink more, stay out longer, do other things I shouldn’t have been doing – all to escape the overwhelm. Now I have a much healthier form of escape. I lean into Jesus and he anchors me, centers me, calms me. He gives me hope and joy despite circumstances.

I may have C.D., but C.D. does not have me. Jesus has me – secure in the palm of His hand and I have every faith that He is working this all for good. I have my own proof of what I believe and no one can take that from me. Life cannot take that from me. I have tasted and seen that the Lord is good and my evidence is irrefutable to me. I have (and still do at times) mourned the loss of my former capabilities and I’m doing my best to discover different ways of doing the things I enjoy. With the Lord’s and my husband’s help, I overcome the anxiety of being in public and go out anyway; to the grocery store, for a hike, to visit family, even out to dinner once in awhile.

Life is always a challenge whether you’re disabled in some way or not. Realistically, I think we are all disabled in some sense whether it’s emotionally, mentally, or physically, and whether it’s visible to others or not. We all have issues and challenges to deal with. The question is, “How much are we going to let it affect our attitude and thereby our quality of life?” You see, I believe that attitude IS everything. When I have a bad attitude I FEEL bad. When I have a good attitude I FEEL good. I may be having a painful, frustrating day and I get to choose how I respond to and deal with that. There are always choices, sometimes they just require a little thinking outside the box AND thinking beyond those voices in your head that tell you to do things a certain way.

I’ve learned a lot in the past three years and I have a lot still to learn. I still hope for healing, or at the very least remission long enough to go kayaking (I’ve always wanted to do that). In the meantime, it’s one day at a time and by the grace of God I’ll get through each day until the day I’m healed forever!

Undaunted

I’m reading a YouVersion devotion right now entitled Undaunted by Christine Caine, and man is it speaking to me! Living with Cervical Dystonia leaves me feeling a bit daunted. I love the Lord and know that He is good. I also know that He is sovereign over my life and I often wonder why He allowed this to happen to me.

I could shake my fist at heaven and be angry with my Heavenly Father for letting me suffer this wretched illness. I could even turn my back on Him and some would think that understandable. However, that’s not how I feel. Yes, I am confused at times because I can’t see the big picture that He sees. I don’t see the purpose that He does, but I do believe there’s a purpose.

God doesn’t do things willy-nilly, just for the heck of it. He is a good, kind, and gracious Father who has blessed me far, far beyond what I deserve. He sent His only Son to pay the penalty for my sin. Jesus cleared all charges against me and believe me, there were many!

Because of what Jesus did for me, these things are true: “we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed;” -2 Corinthians‬ ‭4:8-9‬ ‭NASB‬‬. I may feel confused at times, mourn the loss of health and full function at times, but it is well with my soul.

My soul is protected in Christ. “But the Lord is faithful, and he will strengthen you and protect you from the evil one.” -2 Thessalonians 3:3.  So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” -Isaiah 41:10.

God has a plan and my job is to trust that plan. I can trust Him because He has proven Himself trustworthy to me even though He had no obligation to do so. The bottom line is that regardless of how I feel, in Christ I am undaunted!

😊💕

C.D. Journals – January 20, 2020

I haven’t written one of these in quite awhile so, I felt an update was in order. There are a couple of new things to chronicle. I got an emotional support kitten in September. 😉😂 It sounds funny, but she really is. It’s quite uncanny. She shows up whenever I’m crying and curls up on my chest, purring like a motorboat – and I mean EVERY time! She’s a gift from God!

My sweet Rich bought me a new vehicle right before Christmas – a 2020 Equinox with all kinds of sensors on it. Driving has gotten more uncomfortable as my head increasingly wants to stick to the left. I couldn’t drive our Cruze at all. The Equinox is wonderful. It has lane assist, blind spot sensors, collision warnings, and a sunroof! It is SO comfortable for me to drive. I can see really well in it.

And the icing on the cake that makes it so comfortable is the headrest pillow my sweet sissy got for me. It makes a world of difference.

As far as therapy goes, there’s not a lot of change. I’m trying not to get discouraged. Especially since I pretty much fell off the therapy wagon over the holidays. I’m trying to get back on now and building momentum is a challenge, but I’m confident I’ll get there. I turn 60 this year and I’m really hoping to “roll into recovery”, as the clinic director puts it, for my birthday. I’ve got about eight months.

It is increasingly difficult for me to get myself out in the world lately. Even with my wonderful new vehicle, I just feel uncomfortable in public. People either look at me funny and don’t say anything or they ask me what’s wrong with my neck. I used to try and explain Cervical Dystonia, but that got too complicated and I’d lose them quickly. Now I just say that I have a movement disorder and they seem to understand that better.

My head wants to stay turned to the left. I have to constantly hold it. For the few seconds when I don’t because I can’t figure a way to do something one-handed, my head feels like it wants to spin around and my muscles scream against it. The two places I am most comfortable are my bedroom chair and my living room chair with a pillow under the arm that’s supporting my head – both chairs are recliners. I like being comfortable so guess where I spend a lot of my time. I see that as a problem.

Life is a constant flow of issues that I need to work on it seems. Most recently just accepting the diagnosis, then learning to accept the new “normal”, and now dealing with progression of the disorder and increased social anxiety. Sigh! If I didn’t have Jesus and my husband by my side every day I don’t know where I’d be.

I haven’t “rolled into recovery” and the Lord hasn’t healed me yet. I have no idea whether either of those things will ever happen. One thing I can say for sure is that I am well taken care – spoiled even. Especially by my sweet, amazing husband who tells me he loves me every day. He is always there for me and will drop what he’s doing any time of the day or night to help me if I need it.


This is a picture of the sweetest, kindest, most selfless man I have ever known. God blessed me so greatly the day this guy came into my life almost 28-years ago and I am so thankful he stayed. He helps me to not give up and reminds me that regardless of the circumstances, life is worth fighting for. QUALITY of life is worth fighting for. With this man by my side, my life is indeed quality!

😊💕

C.D. Journals – July 18, 2019

“Physical frailties may cause you to miss earthly fun and fellowship, but spiritual resources will enable you to grow stronger on the bed of affliction.” I read this in my devotional this morning and found it very encouraging. Something I dearly needed after the events of yesterday.

I was all packed for a three-day visit at my sister’s. The car was loaded and I was heading out – in my husband Rich’s Chevy Cruze, which I have not driven in months. Normally I drive a Tahoe with great visibility and a head rest that accommodates my C.D. quite well. Unfortunately, we discovered the other day that my Tahoe had become home to a family of mice. So, my vehicle was at work with Rich (who works at a Chevy dealer) where the mice would hopefully be eradicated.

I got most of the way out of my neighborhood, unable to situate my head comfortably enough for a two-hour drive. I drove around the neighborhood a little more, trying unsuccessfully to work it out. The head rest hit me in the wrong place and actually pushed my head forward a bit. Even with my brace on, I couldn’t get it situated. I drove back home and aborted my trip. My C.D. has gotten a little worse since the last time I drove the Cruze and even then I was not entirely comfortable.

My son unloaded the car for me and helped me unpack with tears in my eyes. Yet another limitation caused by this nightmare of a disease. I was frustrated and depressed, not only about not getting to visit with my sister as scheduled, but over the entire situation. It took me hours to pack when it used to take me half that much time. By the time I was done packing I was so sore and tired that I had to rest before I faced the drive. Then, I was thwarted by my inability to get situated in the car – an obstacle I could not overcome.

I feel like anytime I get behind the wheel is even more dangerous than normal now. I even fear having my license taken away, although I’ve not heard of that happening to someone with C.D. As a result, I don’t drive nearly as much as I used to – probably how we ended up with mice in the Tahoe, it sat too much. I hate feeling limited like that. I keep trying to look on the bright side. The quote above reminded me that God has used the “bed of affliction” in my life before. We wrote a Bible study during one such season. I had to stay off my feet for three months. Talk about limiting and frustrating, but God had a purpose in that and He has a purpose now. I just need to stay focused on that and keep believing that He is in control. I love how He sends me little bits of encouragement just when I need it most. Even though very little goes the way I want it to these days, Jesus is good and He is with me. We will get through this and be stronger for it. “The Lord is my strength and my shield; my heart trusts in Him and I am helped.” -Psalm 28:7a

😊💕

C.D. Journals – June 25, 2019

It’s been awhile since I’ve journaled here about C.D. I’ve been busy with a therapy program that is pretty time consuming, and it’s going to be a long, slow process. I’ve been trying to develop a routine that works for me that I can maintain long-term. There’s no cure for Cervical Dystonia (a.k.a. Spasmodic Torticollis), but apparently there is hope for managing the symptoms. If you’re interested in knowing more about recovery, check this out.

It has been a year now since my diagnosis and I am still trying to figure this out. The disease has gotten progressively worse and I now hold my head almost constantly. I let go for a few seconds here and there when I absolutely need both hands to open a jar, for instance, or butter a piece of toast – things like that. When I do that, however, I have to be willing to let my head go where it wills. That is always to the left, either quickly or slowly, but go it will. I’m learning to do things by feel because sometimes I can’t see what I’m doing due to the fact that I can’t make my head stay straight. I make a MESS in the kitchen these days and now leave the knife work to someone else.

That’s just a small sampling of my new reality. Social anxiety is now a thing. I’ve gotten to the point where I don’t like going anywhere without backup – someone who understands my situation and will provide emotional and practical support. I hate that! It’s not someone going with me that bothers me as much as the fact that I feel I NEED someone to go with me. A lot of times, I’d rather not go at all. I use Amazon and grocery delivery more than I ever have. A big part of that is also the fact that driving is a bit of a challenge now as well. Thankfully, I have an ’03 Tahoe that allows me good visibility and the headrest fits me well. Long highway trips are not as bad as in town where constant head movements are required. I wear a brace when I drive and that helps. Still, it’s not as easy as it used to be.

This disease makes it so easy to give up because it’s a constant physical and emotional battle. Fighting your own body all day is exhausting and disheartening. My arms get tired from trying to hold my head in place while my neck muscles are contorting and contracting, and they do it almost constantly. I take a break every day and lay with my head in a U-shaped pillow, practice breathing exercises and nap for about 30-minutes. The symptoms go dormant when I sleep and the pillow helps hold my head as I attempt to relax. I have NEVER been a napper. I’ve always had too many other things to do and was rarely even tired enough. But, I am now! 😴

I’m not sharing these things to complain as much as to chronicle my journey and what I’m dealing with or learning currently. Right now, I’m still learning to adjust. I’m learning to trust that God allowing this in my life doesn’t mean that He doesn’t love me and still have good plans for me. He does and He will work this all for good. I’m also still learning what it is that I’m supposed to be learning, aside from what I’ve already mentioned. I have a feeling that there are going to be many lessons in this.

One of the more important things I’ve learned for myself is that I don’t want to give in to this disease’s temptation to give up. I need to accept that functioning differently is not giving up. Letting someone else chop the veggies while I do something I can do with one hand is not giving up, it’s functioning differently and practicing kitchen safety. 😉😂 Asking for help of any kind is not giving up. Granted, it’s hard to do sometimes, but it’s still not giving up. C.D. Is just one huge adjustment of almost every aspect of my life . . . and that’s life. As the ancient philosopher, Heraclitus, once said, “The only constant in life is change.” I’m doing my best to adapt to this particular season of change and I think that’s all any of us can do – our best. 🤕

😊💕

New Kitchen Toy

My husband recently gifted me with a new toy for my kitchen that he found on Brad’s Deals.  An 8-qt. pressure cooker that he got for $50!  WooHoo!  Isn’t it pretty?!

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One of the first things I made in it was a super cheesy Mac n’ Cheese, from scratch, in about 20 minutes!  It was awesome and really tasty!

Since then I’ve cooked a roast from frozen to fabulous in about 90 minutes, Egg Roll Bowls in less than 10 minutes start to finish.  I’ve made Curry Chicken, Lentil Stew, and even yogurt!  I am loving this thing!

The kitchen is a more challenging place for me since my diagnosis and as a result, we’ve been eating out more, which isn’t good.  It takes me longer to prepare things and there is a level of frustration that causes me to get a little discouraged and take even longer, or give up altogether.  Then, there’s the whole, “I forgot to thaw the meat!” thing.  With this new pressure cooker, both of those challenges are alleviated.  Even if it takes me longer to do the prep, the cooking time is cut so short that it balances out.  We dont end up eating at 8:00 (which I hate) because I’m a slow poke in the kitchen now, or abandoning the prospect of cooking dinner altogether because I forgot to thaw the meat out.  It’s a win-win!

I’ve only begun to learn all the things I can do with this time-saver.  I’m very excited to try new things in it.  I’m especially excited that I can make my own yogurt again via a much easier process than the crockpot or stovetop, not to mention it’s quicker.  I’m also excited that we got such a great deal!  These things aren’t cheap.  If you’ve never heard of Brad’s Deals you might want to check it out.  Not that this is a plug for them, it’s not.  If you’re in the market for a pressure cooker, that just might be another place to keep an eye out for a deal.  Either way, I’d say a pressure cooker is a good investment for any kitchen!

👩🏻‍🍳😊👍🏻

 

How Exactly?

One of the first things I did after being diagnosed with Cervical Dystonia was find a support group on Facebook.  I wanted to know how to live with this condition; what to expect and how to function in it.  I found a wonderful group of people who share resources and information, and listen when a little venting is needed.  What I did not find was step-by-step directions which is how I roll.  Drawing me a picture is even better or actually seeing someone live their day out with this condition would be ideal.  Funny thing though, I don’t know a single person with Cervical Dystonia except those I’ve met on the Facebook page.  I have never even seen anyone who seemed like they might have it in my comings and goings out in the world.  Where are they all?

That question was asked on the support page once and someone answered, “We’re hiding in our homes.”  That would be one way of dealing with it I suppose.  I spend a lot of time at home anyway and some days it is definitely the more comfortable thing to do, but comfortable gets boring after awhile.  I don’t want it to be said of me after I’m gone, “She lived a comfortable life.”  I want to be remembered for having done something with my life, for having triumphed over adversity, for being brave and bold – not comfortable.  I’m not quite there yet though.

I think I’m still coming to grips with my new reality and still mourning a little for what I’ve lost.  I’m still trying to figure out new ways to continue doing the things I enjoy. I’m still searching for my step-by-step directions.  And that’s the thing.  I’ve been trying for months to figure out how other people live day-to-day wth CD.  What I really need to figure out is how am going to live day-to-day with CD.  How other people live their lives is not as important as how I live MY life.

I’m not saying it’s not helpful to seek suggestions from my fellow afflicted.  I believe that is absolutely valuable.  The problem was that I was looking for someone who could tell me exactly how and I don’t think that’s realistic.  We are all different.  We do different things in different ways and in different environments.  I need to figure out how to cut vegetables, for example, in my kitchen with my knife while my head is moving without cutting off my fingers.  I need to work out how to sit and support my head so that I can at least semi-focus on whatever crochet project or book is in my hands. Thank God I can type without looking at the screen or the keyboard.  😂

Most importantly, I think, I need to let myself cry when frustration overtakes me and I want to throw whatever I’m trying to do against the wall (I don’t think I should do the throwing though.  Crying is less destructive.)  I need to be okay with being broken and cut myself some slack.  I need to stay as positive as possible, let the tears come, rest when I need to rest, then get up and get back at it.  Life is a gift and I want to enjoy as much of it as I possibly can.  I think one way to do that is to accept the fact that there is no EXACTLY how and just find MY how.

🗺😊