Welcome to our site. We are 2 sisters who want to share our interests in books, food, and some other cool stuff. We may add more as we go as this is a learning curve for us. Join us in our quest to achieve a healthier life.
Some Stuff
Are We Disciplined?
A sore subject for me. I want to say I am disciplined to stay on track with my health and personal goals. I read somewhere that discipline leads to good habits, habits lead to consistency, consistency leads to growth. This seems simple and logical, but extremely hard for me, why is that? I have goals. We all do. Sometimes we share them with others and many times we keep them to ourselves. I remember a time I mentioned a goal I set for myself and did not follow through with it. The retaliation I received from people was astounding. I stopped sharing my goals because I did not want to hear them bitch at me. Is this good?
Another thing I read about discipline. Discipline is the strongest form of self-love. Discipline is ignoring our life’s pleasures for the bigger reward that is coming. It is loving yourself enough to do whatever it is we need to do knowing that we will achieve something great. Discipline is having tunnel vision to stay focused and believe in yourself for the biggest reward at the end of the goal. Sounds wonderful right? So why is it that I cannot seem to use this amazing simple written thought-out thing? Does this mean I do not love myself enough to make the effort to be more disciplined in my quest for a healthy body and life?
You must be clear on your why so you will have the resilience to overcome the inevitable obstacles in your path. I think that for me to understand this sentence that I read, first I need a vision. If I do not have the vision, I will never change. My vision is to be healthy, and I want to walk again. I must ask myself every single day how bad do I want this vision? Every day is a constant battle to just get through my day. Motivation requires the desire to want something, therefore discipline is necessary to change. Sounds like I get it. So why is it difficult?
As my sister Pam stated… “A sore subject for me”. Discipline, the easiest thing in the world to do, yet the hardest thing in the world to accomplish at the same time. The question becomes this, how bad do you want it? How bad do you want to lose weight? How bad do you want to be financially independent? How bad do you want anything that does improve your life? The starting and falling off the wagon is getting old for me. I am, or should I say, was an athlete. I know better. Practice DOES make perfect or close to it. Why can’t I apply what I did in my college days to my everyday life? Is it laziness? Because here is the key, discipling yourself does get easier when you keep at it and do not let distractions or excuses interrupt your routine.
Have I accepted that I am okay with how I am? The answer is no because I do want more. I just do not want to do the work. I want a magic pill that makes everything as it should be, and I feel better overnight. But as I already know, it does not work that way. When does it become enough for me, and I tell myself “Just Do It”? I must address this just like my sister Pam can only answer for herself, because obviously being disciplined does not matter how it is said to me whether it is in a motivational or degrading tone, it does not make me want to change. I do know this, I will not give up, and I will find my own path to being disciplined.
Is It Lying and/or Making Excuses?
Do we lie or make excuses to ourselves and to others? If we lie, how does this affect our wellbeing? Will it come back to us vigorously by making us sick, struggle to sleep, feel depressed, insecure, the need to appear important and likeable to others, be mean, have a crappy attitude, or gain sympathy. As a wise friend told me once, a liar needs a good memory. The stress of remembering what we lied about, and it can come back and hurt us big time. When we make excuses, we can finagle our way out of a confrontation, not having to tell people or family what is really going on, convince ourselves we will get back to “it” soon, or repeatedly delaying things that really need to be addressed. Another common thing is when lie about your mental health or express how you really feel by denying therapy, and saying this common excuse – why should I pay or throw away money for therapy? But I still struggle with daily life and resting. What we project out from our attitude and behavior glues the actions to people around you, personal and professional. Resting to prepare the mind and body for the next day becomes a constant battle.
I make excuses, but I am not sure if I lie. I often say I am ok when there are days, I know I am not ok. When I make excuses or lie about how I am feeling, my attitude and behavior shows a different projection, it confuses the people I am around. For me, my chronic disease is unpredictable. I have 3 diagnosed autoimmune diseases. Each day is a new set of emotions, repeated feelings, mobility issues and figuring out how to do things to still maintain my independence. I lie because I don’t want to hear or see anyone’ s suggestions on how to cope or do something because they do not have MS and the other autoimmune diseases. They truly do not understand, I must understand that as well and be patient, more considerate, and I know they are doing their absolute best. Is this a lie or an excuse?
I am around people more and every day I see things. I am a very observant person more now than ever, I see stuff and am told things that will happen, or the plans are in the works, yet nothing has been done or goals are no closer to completion. So, if I say something, will they have the same attitude and feelings as I do about the MS? Are their feelings and actions valid? My thing is why the denial or delay?
Another thing I think we can all relate to is food, diet, getting healthy, changing our lifestyle in food, losing weight etc. Why the constant starting over? Especially when we know and have seen how much better we feel when we do something healthy and right. The constant falling off the wagon and making excuses or are we lying about our food issues? These are things I am sure we constantly ask ourselves with no answers. I know I ask myself this all the time. I know and have seen what and how my body functions when things are right. So why excuses or lies?
Mental Well-Being
Mental well-being from another person’s perspective.
Everyone goes to Google to get a definition of something. One of their explanations on defining mental wellbeing is this:
“Good mental health means we can realize our full potential and feel safe and secure. It also means we thrive in everyday life. Mental wellbeing is our internal positive view that we are coping well psychologically with the everyday stresses of life and can work productively and fruitfully.”
Everyone knows through our Sister Niches journey that my sister has uprooted her life and relocated to be closer to family. Me… We are all we have left of “immediate” family. Don’t get me wrong… We have other family members, but they have lives of their own and it truly is not fair to put anything on them especially the magnitude of what my sister has and that is Multiple Sclerosis. I will be forever grateful to Caroll Schlorff for helping my sister. There is nothing that I can ever do to repay her for her generosity and most of all her time helping my sister.
Her mental wellbeing… I know that one of the things she is relieved about is having someone with her or around all the time now. She moved in with me in October of 2023. My apartment is not handicapped friendly, but she has made it work and she does not have her own space yet. I know and can see that she misses her space, privacy, being able to have negative days while she works through her issues or is not feeling all that great.
I am not sure how I would feel or react if I had Multiple Sclerosis and I pray that I never have to find out. Regardless of the day my sister is having, Pam continues to surprise me with her desire to remain independent. I will admit, there are days when she must stop me because I am doing it for her, and I don’t need to. I can only imagine the mental wars she has with herself daily; I honestly don’t think I would want to. While I am learning how to “help” my sister when we go on trips, getting in and out of the car or going to places that are not accommodating for people in wheelchairs, the amount of patience she has for me is miraculous. I have hurt her with my movements getting her in and out of the car, and the only time she gets upset with me is when she herself is having an extremely bad day. The amount of patience is mind blowing along with the constant thought process of “I hate that I need someone’s help”. Do not misunderstand this as her not being grateful, because I know she is.
Pam has had to accommodate everything and everyone around her. I have seen it in public spaces and within the confines of her own home because I personally have done it to her, not intentionally, but I have done it. I witnessed a situation that happened to both of us at Sam’s club a couple of weeks ago. Pam was trying to get out of the store’s scooter and into the car, she was struggling. It took about 5 or 6 times just to get off the seat to stand up and maneuver herself to get into my car. In the meantime, an elderly woman walked up to us and asked if we needed help, I let her know, thank you, but no, she needs to be able to control her movements and situate herself so we can get her in the car. The woman stayed and said, I need the store scooter. I informed her that she will get it but will have to wait a few minutes. She was persistent in asking us if we needed help and kept commenting that she needed the store scooter. I lost my cool because she was adamant about the scooter while I was focused on my sister moving from the store scooter to my car. I basically told her she was going to have to wait and thank you so much for your patience.
After this incident, now I find myself anticipating what she may need. Another prime example is a weekend we went to Amelia Island, FL to go and see a friend of hers that she hasn’t seen in almost 17 years. We all agreed to get ice cream after walking and wheeling the sister around. The Ice Cream place we stopped at had steps. She remained outside while I went in to get a picture with my cell phone of all the ice cream flavors so she could pick what she wanted. The friend looked at me and said we need to go in and get the flavors for Pam so she can pick what she wants. I said already done. I took a picture of the menu with my phone, she looked at me and said wow, I would never have thought of that. The fact that I have learned to adapt to the situation is kind of sad, but necessary. I know that Pam was frustrated that she couldn’t go inside, look around and get ice cream herself. Don’t get me wrong, I KNOW she is grateful that she was able to get ice cream. I think the bigger picture here is her independence is gone in situations like this because not every place or everyone is as accommodating when someone is disabled with a debilitating disease. She is stuck in a body that works some days and some days not… The amount of positivity she must go through every day in order not to succumb to depression takes a lot of work. She has told me that she has accepted the fact that she does have Multiple Sclerosis but there are days where she just wants to give up but doesn’t. Quite frankly, I think she is entitled to feel what she wants when she wants.
I think her biggest mental hurdle was the weather. Unless you have lived in Michigan, you have NO clue what dreary weather is like “almost 365 days and 24/7” and this is being sarcastic does to a person. I may be exaggerating a little, but not. She tells me every time we go and get the mail, “it is SO beautiful outside”. I remember seeing on her face the sheer panic when the electricity went out due to snowstorms. Everything that she uses, which enables her to be independent, is powered by electricity or a battery which needs to be charged by electricity. The feeling of helplessness must have been awful for her, then to be told by people, “oh quit complaining, you should be grateful for what you do have.” Um……. I will refrain from voicing my opinion here.
I know she is missing her space and her ability to have mental breakdowns privately, but that will be resolved shortly as we are moving to a place that accommodates her needs. Since October 2023, she has been out just about every weekend, weather permitting, more here in SC than she has her entire time she was in MI. As far as mental wellbeing, I think my sister is doing fabulously. I for one, find myself slowly changing my mindset because I can walk and do things without the help of another person. The saying “unless you have been through it or are going through it” really rings true. You DO NOT have a clue to what another person is going through daily. While you “THINK” your words may help, sometimes they do harm more than they do good. There is a difference when a person needs a push compared to downright ignorant comments.
Mental Wellbeing – in my mind, the ability to remain positive regardless of what situation you are going through. Pam does extremely well, she has very few bad days and still manages to come out on top.
Think before you speak, and always remember, you have absolutely NO clue what someone else is going through. Just because something works for you, doesn’t necessarily mean that it will work for someone else.
Laziness and Emotional Exhaustion
In the last post, my sister Pam and I talked about “fear” in our own way and what we thought fear represented. I want to write about “laziness and emotional exhaustion” because for me, I feel they are similar behaviors. Because energy plays a huge role in life, and I do believe that energy has everything to do with how we cope.
The Oxford dictionary noun version of lazy or laziness is “the quality of being unwilling to work or use energy; idleness”. The adjective version of lazy or laziness is “unwilling to work or use energy”. Google explains that emotional exhaustion is a symptom of burnout, a chronic state of physical and emotional depletion that results from excessive work, personal demands, or continuous stress. The reason I think that emotional exhaustion and laziness go hand in hand is because a person does become lazy when one is emotionally exhausted. The one thing that Pam and I fully believe from day one when we started this journey together is FOOD is everything to the body. Your body is your temple regardless of what goes on in life. If you “take care” of your temple, your mindset is different.
I wrote about my sister helping me out with my diabetes because the doctor wanted to write a prescription called Ozempic. We talked about several ideas, and I decided to try carnivore eating. I was surprised with the results. At my last doctor’s appointment, my fasting sugars were below 110 and my A1c lab results were 5.7. Here is the thing, I have fallen off the wagon again because I allowed life to get in the way. My next doctor’s appointment is scheduled this week on Thursday, March 28th. I am not looking forward to that appointment, but it doesn’t mean I am giving up.
This makes me wonder if my mindset is not strong enough yet to overcome “what goes on in life” which I fall back on old habits and “become” lazy and let my emotions get the best of me. Emotional exhaustion includes symptoms like lack of motivation, trouble sleeping, irritability, headaches, sense of dread and depression. Being lazy includes symptoms like lack of motivation, distractions, diabetes, lack of sleep, diet, and stress. Very similar symptoms. Is it cultural pressure or stigma? Could it be boredom? Am I overwhelmed? Am I doing too much all at once? I need to determine what is important to me and focus on these ongoing life interruptions. The one thing I noticed about my sister since she has been living with me is her patience. She has A LOT of it. I am in awe of it. Patience is a skill that can benefit me, and I need to be better at that. The other thing that I am noticing is she always tells me, “One thing at a time”. She says I am all over the place. Could this be the reason I can’t commit to my goals? As much as I get irritated with her pointing these things out to me, is this why I can’t seem to get to stay focused? A friend of ours back in Michigan has lost a lot of weight. She told us the one thing that has stuck in the back of my mind to this day, she said. “It is something that I could control and manage.” Is this something I need to do to get my “mindset” under control?
I read so many books and agree with the methodology of improving oneself. Here is my list of thoughts I bombard myself with every single day. Why can’t I apply it to myself? Am I using being emotionally exhausted and laziness as a crutch when I fall off the wagon? Or am I genuinely emotionally exhausted because the symptoms that I have listed fit me to a T. Food is my stressor. Junk food is my temporary high. But I also know that it is just a short-term fix and I still do it. Pam and I talked one night at dinner because the very thought is on our brain every day. How do we hold ourselves accountable? We are writing a blog and promoting products that we feel will help others. How can it help others if it doesn’t help us? Do we chalk it up as a bad day? How many bad days can a person have? I do know this. I will reset, refocus, readjust, and restart as many times as I need to until I have overcome what I know I can do. I will continue to write about my journey as I know it will help someone else that is going through the same thing we are. It is a life journey that we need to do and master. If Pam and I can make it easier for the next person, then we have done our jobs while we continue our own personal journey.
One of my favorite quotes “what could you attempt to do if you could not fail”. I used to use this as a motivator for myself, a group of people who I used to manage in another chapter in my life, and when I consult or coach others in health and wellness. I think I have lost my way. Googling laziness comes up with some ideologies that I think justify laziness. Some thoughts are: “they may not have a clear goal or purpose in life, or they may lack the energy and enthusiasm to pursue their goals. They may also be overwhelmed by the amount of work they need to do, or they may be afraid of failure”. I must admit I got annoyed by this. I think maybe it is because I am not able to do the things I used to do because my body has weakened over the years from Multiple Sclerosis. My thoughts are, am I using my disease as a crutch to prevent myself from achieving something. I think that when people appear to lack motivation, it could be from being diagnosed with a disease, trauma, exhaustion, need guidance or support, or simply just not game to any idea to improve themselves. I think this is me. I see this in a couple of people I coach. I think fatigue and lack of hope plays a huge role. Life is hard. We face these struggles every day. Financial difficulties, health issues, working long hours then must take care of things at home such as food shopping, cooking, laundry, cleaning, taking care of someone, and more. I would rather watch a movie, eat junk food, sleep, and do art. Nothing else.
Procrastination and laziness to me are not the same even though it feels like it. Do I put off getting back on track with healthy foods that I did so well with and lost 41 pounds or suck it up and get with the program because I know better. Now I approach my days living on a scale of do-good vs be bad and tomorrow is another day to eat healthier. I remember someone from my working days said, “procrastination is a time-management issue”. I often wondered if that statement is true. The phrase used to irritate the hell out of me. For me, I think procrastination is an emotional feeling or thought. I know I have heavy anxiety when I start a weight loss regimen because of all the prep and planning it takes just leads me to go ugh! Exercising to increase mobility and strength is necessary and for me it is a double ugh!! This makes me think eh, tomorrow is another day just to get rid of my negative thoughts in doing what I know needs to be accomplished. When there is chronic disease involved, the negativity that creeps in subconsciously becomes very real because I know I need to do better, and it really is necessary. The list of reasons to procrastinate becomes longer.
Another thought process I have is guilt for not finishing my master’s degree. I used to feel I was lazy and procrastinated getting my papers written for class. For a long time, I felt so defeated and anxious because I couldn’t finish anything. I made myself sick. I told my neurologist about this and turns out I have a sensory overload disorder. Multiple Sclerosis is preventing me from focusing and processing information or participating in group discussions. I become very overwhelmed, anxious, nervous, emotionally distraught because I was never this way. Turns out I was not lazy, rude, have bad time management skills or a procrastinator. Who would have thought that?
How to fix these things we are burdened with? I have some theories. Sometimes we become so overwhelmed with work and life. Always trying to prove we are unstoppable. Maybe to prevent procrastination, is do some things less, cut your to do list some. Listen to your body. When we become overwhelmed, we feel sick and do not want to do anything. Quit saying, I’ll do it this weekend, no more cheating, start exercising everyday – this is not motivational. What is motivational is making it fun. For example, some people hate to cook. I love cooking. I am always trying to find ways to make my meals healthier and cook food that tastes good. I don’t get bored easily with my food plans. I need to apply that concept to exercising. What do I love about exercising? I need to work on that. Be logical and mindful. Think about what is logically workable for us. Make the right choices that we know we can stick to. Last thought, are we a bad influence on each other? Stay tuned.
Fear
My sister and I have decided to collaborate on this next blog. Pam (she) brought up a few interesting things that we continue to struggle with. I am enjoying my time with my sister again. We are having interesting conversations now. I think the 20 years apart has done us a world of good. She mentioned a few interesting questions in one of our many talks regarding our blog. Fear was one question, laziness was another question, emotional exhaustion, persistence, and resilience is the last thing we talked about. She also said why don’t we collaborate on a blog with each of these things. I thought, what an amazing idea. It will be interesting to see what our perspectives are when she works her magic in blending our words. Fear is the first collaboration…
The definition of fear in a noun sense; “an unpleasant emotion caused by the belief that someone or something dangerous, likely to cause pain, or a threat. The definition of fear in a verb sense; “be afraid of (someone or something) as likely to be dangerous, painful, or threatening.
“Don’t be afraid of fear. Don’t let fear rule you. For the moments when you’re challenged by fears like: Am I good enough? Am I smart enough? Will I fail? Look fear straight in its ugly face and barge forward. When you get past it, turn around and give it a good swift kick in the ass.” ~ Helen Mirren
We are faced with these words daily, fear, laziness, emotional exhaustion, and resilience. We all have our own experiences and stories that may or may not contribute to these four words. Fear is the first thing I would like to expound on.
I know my number one fear is disappointing others that mean a lot to me, with things that I should have or should not have done for them, because that has happened growing up. I am not a parent, and I don’t presume to know what a parent is thinking, but here is what I do know. Words have a powerful impact on a child. I was often told; “you are no good and you are lazy.” It takes time to heal from that when you hear it every day. I have been working on my emotional well-being now. Retraining my thought pattern and my emotions. “Emotions last longer than 90 seconds because we continue to fuel them with our thoughts. We do this by telling ourselves the same stories about the triggering situation over and over. This is when they stop being emotions and start becoming moods.” Unf*** Your Brain, Faith G Harper PH.D. This is one of the best books I have ever read and will always recommend anyone to read this book.
Another fear that I have is with my professional career. I have fought hard to get where I am today and continue to fight to achieve my goals. The fact that nags me daily is that I am a hard-of-hearing individual, and that people can’t look beyond my impairment when it comes to my job.
There are a lot of things that I am fearful of, but I will continue to push forward like I am on a softball field. Because when I have a softball glove on my hand, nothing phases me even getting hit with a ball when I am batting or fielding as that is the one thing that I am most confident in with myself. I will always push forward with anything regardless of my fears.
Fear can be healthy and unhealthy. We teach ourselves to be survivors, sometimes at an early age to be safe from many things that happen in life. Self-care in terms of medical, wellbeing, mental health, are some examples. Surviving fear is built in our nervous system “the fight and flight instincts” and gives us the survival instincts we often need from bullies, gaslighting and narcissistic people, surviving daily abuse from medical, government, legal issues for those who have and are on disability, culture abuse, family and friends abuse, the government and medical individuals constantly putting us in danger and often lying about everything and more. Fear can be unhealthy when it makes us more cautious than we want to really be safe and when it prevents you from doing things you would normally need to do or enjoy. Sometimes our fear is so severe that we respond to the appearance of something instead of what it really is.
Some of us have vivid thoughts and there is a lot of power in the thoughts we create. It can be unhealthy to the point where we create a fear like, “there’s something wrong with me, I think it is probably cancer”. The fear is so intense we become paralyzed and cannot go to the doctor to get the issues checked out. A problem often seen in human behavior is that we tend to “fill in the blanks”. What ideas or reasons we fill it in with is usually an assumption. The power of our thoughts can be incredibly healthy or unhealthy. For instance, when we face our fear, “conquer it” we change our thought mentality in our mental wellbeing. We become superheroes in our head because we overcame something that was so fearful to us.
Fear can be emotionally exhausting and paralyzing. I can speak about this because I struggle with fear every day. I have a disease that has robbed me of my independence and the ability to work full-time. I am dependent on others to help me with things I cannot do anymore. I am fearful every day that I will lose someone or something that helps me stay independent. Karen and I are all we have left of our immediate family. What happens to us if Karen becomes sick and I cannot take care of her, or she cannot help me? This is a constant fear. The fear of having to be put in a nursing home at an early age and declining because nursing homes are often documented with abuse stories. I have had stories told about being diabetic and in nursing homes the food is so bad, the A1c readings are always very high around the 200-300 levels. This is a slow excruciating death for someone who is diabetic.
A friend said to me recently, we cannot live in fear every day, it is not a life. I took that to heart because it is something I live with every day. I live in fear of falling. I have fallen many times in the last few years, it is extremely painful and nerve wracking. Laying on the floor with my body distorted painfully as I wait for help from emergency people and friends. Being left in the bathroom naked for a period is another fear. It has happened a few times being left in the shower because the person was not finished with her daily routine or being left on the toilet waiting for clean clothes because I had an accident because the person was busy. My body becomes so stiff from being in this position I cannot move and then when I do get help, the transfer from something to my chair is excruciating.
I have another fear and it is a good one. The rest of my life. I still have dreams and goals I want to achieve. I still dream of having my own accessible place, writing my book, becoming independently financially secure, a well know artist and cook, and being healthy. I need to learn to focus on this type of fear because it is exciting and positive and not the fear that paralyzes me to the point where I cannot function daily.
I read a book a long time ago written by a man who was diagnosed with pancreatic cancer. The main message in the book The Last Lecture is to live life to the fullest, cherish relationships, and pursue your dreams despite obstacles. One of the most profound quotes for me in his book, The Last Lecture, I think it helped me live with the disease Multiple Sclerosis all these years. What my thoughts and fears I still struggle every day, but I try to remember this: “We can’t change the cards we are dealt, just how we play the hand.” — Randy Pausch
Independence – How important is it to you?
My sister has been living with me since October 28th, 2023, I have a newfound respect for people who have lost their independence through no fault or choice of their own.
The memory of breaking my right leg when I slipped on the ice in Michigan comes to mind for valuing my independence. It barely breaks the surface of what my sister now goes through every day. I had to have surgery on my right leg to put a rod and 8 screws to set the bone and make sure I will continue to be active as I am a person who does not sit still very often.
This is what I remember when I first broke my leg as I was living with several roommates at the time. These are the thoughts that ran through my mind when I was in the Emergency Room waiting for the results. I am going to be an inconvenience, how am I going to fix my meals, how am I going to get to work, how am I going to get in the shower, how am I going to take care of the bandages, how, how, how, how, how, how… I cannot to this day count my blessings enough. I was blessed and fortunate to have people in my life that cared about me. Once I got through my surgery and all I had to do was wait for everything to heal and go through physical therapy to strengthen my foot / leg. I am also grateful that I am a quick healer and I have a strong mindset to get better quickly. My roommate at the time, was Joy… She was studying to become a nurse. So, in a small way, her having to take care of my bandages and watch what was going on with the area was beneficial to her and gave her practice. She also did not mind cooking for me. So that was all squared away and one less thing I had to worry about.
After two weeks, I got the okay to return to work. Armed with a scooter that kept my knee at a 45-degree angle and a freight elevator that got me to my office. I was blessed to have a wonderful friend to me that offered to take me to and from work every single day for 3 months. That is roughly 120 days out of her personal time and life to take care of her family and rearrange her schedule to help me. Becky did not hesitate to offer and said to let her know when I needed anything, and she would be there. Personal hygiene. That was a huge challenge as those that know me, I very rarely the house without taking a shower. I had to wrap my leg up in plastic and tape it, so the bandages did not get wet while I took a shower. What normally takes me 15 minutes at the most from start to finish to get ready for the day, now took me an hour. It was a bathtub/shower with doors that slid back and forth to keep the water in the tub. It was extremely hard to maneuver. I had to worry about slipping, I had to worry about putting weight on my leg, I had to worry about everything. There were no bars of any kind that I could grab on to that would ensure my safety and not get hurt again…
Where am I going with this? Independence can be taken away from you at the drop of a hat. People do not fully realize or understand that when you offer help to someone, it takes time away from your normal day to day activities and life. It adds to it. Living with my sister again now for 4 months, I for one, want to extend my heartfelt thanks to a certain individual that helped take care of my sister for 6 years with the things that Pam could not take care of on her own. Carol Schlorff… She is the epitome of a “true friend” to my sister Pam. I am not going to take anything for granted anymore because independence can be stripped from anyone at any given time. My loss of independence for 3 months is no comparison with my sister who deals with this on a daily basis.
To lose your independence is shocking, mortifying, scary, plays havoc on your mental health not to mention the constant guilt of asking people for help. As a Deaf person on top of the handicap of body movement, my sense of observation is triple compared to hearing and hard of hearing people. I read actions and facial expressions very well. I can see frustration, face changes, body language, the way someone walks or display emotions as they change or becoming heightened. I feel an enormous amount of guilt every day. I have been told to stop worrying and apologizing, but this comes with trauma I experienced from people since becoming more dependent on the wheelchair. I have experienced many forms of actions and emotions from a lot of people that range from abuse, ignorance, stupidity, insensitive actions, anger to the point of being afraid, negligence, abandonment, comparisons, my heart broken because of the disease, having to wait beyond the set times of plans, ableism, the list is endless and always updated daily. I was this person once. But as the tables have been turned, I see how ignorant and stupid I was because it is hurtful, painful, shocking, embarrassing, and to the point it can be hard to get through some days.
When I make plans or have been promised something I make damn sure I can meet the person’s schedule too. I go out of my way to schedule things to fit what I know my body can handle. When a person delays, cancels, or changes things to fit their timetable, how does this work for me? I must accommodate them except for my friend, Caroll, she gets it. Because I really do need something done, but I end up with plans cancelled or verbally abused to the point I experience trauma instead. Some examples are: making plans to meet at 10 am, but this person decides 1 pm is better after already agreeing to 10 am, my relationship ended because this person felt that I think they are my caretaker instead of a partner, I have been left in the bathroom for a long time during an accident of not being able to reach the toilet on time because this person wanted to finish playing cards with a group of people, telling me my relationship ended because of my attitude and moods with MS and because they thought I was awful to them arguing with me in a public place and I couldn’t leave because I cannot drive anymore, I rode with someone and was made me sit there while being yelled at, squeezing my hand so hard while operating my scooter to the point I couldn’t stop my scooter and crashed into a shelf full of food in the grocery store, being told I should join a sport or exercise group or event that requires running or quick movements and then sending examples of people in manual wheelchairs competing or playing in these events, lastly being told they expect to see me up moving or walking when they see me next time, there are more incidents but I am becoming upset all over again. I think you get the point.
I am not sure if there is a solution to this ongoing life altering thing because many people with disability experience their own traumas and the levels of insensitive humans on this planet, mind blowing. We even experience ableism in our own culture and community. The mindset of people is a never-ending surprise. Independence is a privilege that we often take for granted, and when it is lost it becomes debilitating to the point it can become devastating.
Stress
I have decided to talk about stress for this blog. I am by no means an expert on the subject, but everyone has their own way of dealing with stress.
Looking up the definition of stress was quite interesting. I felt that WHO (World Health Organization) had the best definition that everyone can understand: “Stress can be defined as a state of worry or mental tension caused by a difficult situation. Stress is a natural human response that prompts us to address challenges and threats in our lives. Everyone experiences stress to some degree. The way we respond to stress, however, makes a big difference to our overall well-being”.
There are all kinds of ways people deal with stress. To name a few, people exercise, eat, drink, smoke, read, go for a drive, read, or revert to God and use His lessons to get through the stressful event(s) that is occurring for them. My “go to” is food when it comes to stress. It always has been. I am not sure why. It could be because growing up, our family never had any food. When I “discovered” how the sugary or bad foods such as ice cream, donuts – specifically eclairs, Ho-ho’s, milky-ways, potato chips, Doritos and Mountain Dew made me feel, it was an escape mechanism for me. That short temporary high after eating my favorites. It was worth it to me. Now, I think it is more of a memory that is a comfort for me which I continue to use today even though I KNOW it is not good for me and it is a TEMPORARY fix.
When “my back is up against the wall”, stress occurs. I react with anger and there are things that I never knew I could do or say. I never know what will come out of my mouth or what kind of actions I will do. This is a person that I DO NOT like when “I” feel there is no solution, or “I” have been cornered. As I am writing about this, I am beginning to see it is why I revert to the “favorite foods” to deal with the stress that I am going through because the “my back is up against the wall” person is not a very nice person. I am a firm believer that emotions are the backbone of life. “Emotions last longer than 90 seconds because we continue to fuel them with our thoughts. We do this by telling ourselves the same stories about the triggering situation over and over. This is when they stop being emotions and start becoming moods.” ― Faith G. Harper, Unfuck Your Brain: Using Science to Get Over Anxiety, Depression, Anger, Freak-outs, and Triggers. So, I think to myself, the key becomes this… if you can ride out the 90 seconds of emotions that flood your brain or body, and let logic take over your emotions BEFORE you respond to what is triggering that stress level for you, you’ve got it made. It sounds simple right? Not so much for a lot of us. For me, that is where the food comes in and it is where the “awful Karen” comes in. I never know which one will surface. I think it is because I am continuing to “hold on” to memories that unconsciously tie in with the stress that is going on in my life at that moment. I think I am getting better at it, but there are times where I just cannot…
I am always looking for ways and avenues to deal with the everyday stress or the once in a blue moon “bam!!, the continuous “one right after another” stress level never seems to stop. I know exercise DOES help me, but I am not very good at sticking to it. I will be diligent for several weeks, then suddenly, the “bam” moment hits, and I revert back to sleeping, doing nothing, doing anything all at once or eating to escape instead of working out when that is truly the healthiest way for me to deal with stress. When people tell me, “you should go and work out because you do better when you work out” or when I say the exact same thing, my ‘stubbornness” kicks in and I KNOW that it is not logical, I just won’t work out. What does it boil down to?? Laziness, wanting to wallow in it, WHAT???
While I am rambling on and on here, it does not sound like a solution or steps in the right direction are anywhere to be found. However, for me, I am beginning to find teachings from Joyce Myer help calm me down and make me look at things from a different perspective. There are, in my mind, two common denominators to her teachings… “Live life with love” and “if it doesn’t have anything to do with you, let it go”. It is THEIR feelings, not yours, it has nothing to do with you. I think I will be re-reading her book The Battlefield of the Mind because that book was the start of me continuing to listen or watch Joyce Myer.
Journaling… My nemesis. I am going to try it again. I want to start writing at night because the day is still fresh on my mind. When I wake up the next morning, the day before will not seem so bad. Maybe writing at night is better…….
Trust
Trust is something. Trust is a relationship between two people. It can come quickly, or we spend a lifetime trying to achieve it. Trust it, have faith, and spirituality are sensitive topics. Is it because we learn not to trust based on life experiences?
My trust in faith waivers constantly. We all interpret what we read in the bible differently or when we listen to a sermon or lecture. It is often we do not discuss the bible, religion, faith, or our spirituality freely because it can cause judgment, arguments, rifts, or trigger angry people. For me, I have been forced to pray – because of religion, former people like priests, my mother, my boss, or even felt intimidated by Christians who say, is it ok if we pray before or after a gathering? I had a conversation with a friend this past week about prayer and talking with God. I still struggle with watching or listening to my friend pray starting with thanking God, praising him for the wisdom and being able to talk about God without any expectations from me to add to that moment of prayer. I felt guilty, very conscious of not contributing to the prayer, and jealous.
I struggle to pray every day. I feel strange to ask God for something. I often think about what life will hold for me as I enter my 30+ years living with Multiple Sclerosis. I turned 60 in October 2023. I felt disappointed in me on my birthday. I look back on the plans and goals I had or set in my life, and I did not accomplish those goals. I often wonder if it is because I didn’t trust God with my life and did not pray. My friend tells me every time we talk, “God is not done with you yet!” I find that interesting. I am still here pushing myself every day to not let this disease defeat me. Instead of just placing all my trust in God, I placed all my trust in me, my mindset that I don’t need anyone, I can overcome this. I developed this huge chip in my mind because I suffer every day with this disease, I felt I should be rewarded for that. Instead of trusting God to be vindicated for my patience, my suffering with pain. I need to learn the power of trust. I need him. I am left hanging because I think I do not have the strength in my spirituality to trust. I need to. The picture I put in the beginning of this post is powerful to me. This is my mindset. I am hanging off the cliff, the person holding me is God I have nothing to lose.
I accomplished and overcame things I thought were next to impossible. I have 2 college degrees. A huge milestone especially for me who had a poor GPA in high school. I had many false starts with college. Signed up, but always gave up because I did not feel supported about my decisions to work towards a career. I blamed my MS for my career changes. I blamed many things that happened growing up with abuse, people hurting me over the years, but I hurt them too. Now, my sister and I have started a website called Sister Niches. I am not sure where this will lead to or if it will be successful. I have this desire to make it successful, but do I trust that it will succeed? My friend tells me every time we end our conversation, trust God. Let him help you. He will. Trust…
Persistence
A brand-new year, 2024. A shiny copper penny, a crisp $50 bill, the best recipe, a great motivational quote. I always think of “New Year” as a chance to improve and change ourselves. I used to think, oh man this year really sucked, and I am looking forward to a new year. I want to just put this year behind me. Ok! I get that. But here’s the thing, what we went through often strengthens us in ways that gives us persistence. We even say that. I have proof. Just look in Facebook. #1 quote posted, “I am looking forward to a new year, I just want to put this behind me”.
Persistence allows you to overcome obstacles that you may face.
Persistence is an important quality for success in ALL areas of life. It allows us to keep going when things get tough and to overcome obstacles and barriers. The defining characteristic of a successful person or goal is persistence. We do not inherit persistence, persistence is earned. I found this to be very important to my plans, hopes and my future. I do not like to call them resolutions. I prefer “plans”. Crap happens every day, we must adjust our mindset and goals because of it. This is persistence.
We become stronger in our quest for a better and healthier life.
How many times have we heard or seen people express their opinions as we continue trying to do something and it often can be difficult or other people are against it. This can be improvements we think will better our life such as spirituality – reading the bible and talking about it, surgery to help us lose weight or take medicine to help lose weight (I am guilty of this I judge when people take drugs that I know are not healthy and feel they can do better), eat things we know attribute to poor health.
Persistence is a strength which is closely related to other strengths such as courage, a desire to achieve something, and to be more honest, confident, and committed with ourselves and to the people we are around every day; regardless of repeated failures, dead ends, and periods of frustration when it seems like no progress is being made often come before any major breakthroughs happen. Persistent means having the inner energy and intensity to keep motivated and going through these tough times.
I often ask myself, why do we lack persistence? Maybe two reasons that could be why are not persistent with goals. The first could be a poor self-image. Deep down maybe we don’t have faith that we can succeed, or we only approach our plans and goals half-assed. Persistence is good when backed with a worthwhile goal. It works for anyone when it is a part of a process that is undertaken to head towards progress. By itself, it could be part of a compulsive behavior pattern which may not help anyone, like ready to give up at the first sign of difficulty.
“Motivation is what gets you started. Habit is what keeps you going.” Rohn
Persistence means being able to adjust and adapt without having a lousy attitude and falling apart when it feels hopeless. This itself is very hard to do for anyone. I often think in terms of sports such as gymnastics, diving, disability or disease etc. Persistent people can adjust and adapt their action plan most of the time. They do not stubbornly persist in the face of evidence that their plan is not working but look for better ways that will increase their chances of success. Highly persistent people see their journey as a series of dead ends, detours, and adjustments (nailing a landing, diving exquisitely, finding solutions to barriers) but have complete faith they will reach their destination. They are not tied into themselves and are quickly willing to admit when something is not working. Also, they are quick to adapt to the ideas of others that have been shown to work well. Persistent people usually stand out and are often misunderstood or ridiculed because they can make those around them feel uncomfortable. I learned this from my struggles and I will continue to strive to succeed.
A bend in the road is not the end of the road – Helen Keller
Patience
This is the first time I have a title for my post before writing anything down. The title came to me when I was watching my sister cook fried eggs on a Saturday morning. I think that it was an “ah ha” moment for me. If you want good food, you cannot rush or take short cuts. Even though my sister and I have spent the last few years cooking using Face Time and with me learning how to “really cook”. There have been times that I told her I did not need any help for that week. I rushed through cooking my meals because I wanted it done and over with. When I was watching my sister cook the eggs that Saturday morning, the conclusion for me was “it doesn’t work that way” and when I cooked without Pam, my meals were mediocre.
Never in a million years did I ever think I would be applying cooking metaphors to life. Patience truly is a virtue. A lifestyle change takes patience. Watching Pam cook that egg, she was patient with every step and did not deviate from those steps. The method of making an egg to her was an art. Today, everyone wants instant gratification and do not want to put the work into any kind of a change. A prime example is losing weight. We all know that losing weight can be done; however, it takes work. Instead, people want to be put on Ozempic or the latest craze out there and not change their eating habits because one of the “gimmicks” that Ozempic provides is that it curbs your appetite. What they don’t realize is the weight will gain back tenfold when you stop using Ozempic or do not eat correctly while on it. Most people just do not eat, become extremely thin, or if there is the latest craze out there, people will ask their doctor for it. So why not do it the correct way? Practice patience, stick to the steps that we know have been proven to work and do not deviate.
I fell off the wagon. I am not going to beat myself up. I have taken the steps to get back to what I have been doing since February. My patience with myself was wearing thin and I was beating myself up. What I came to realize is that it does not do any good but makes me feel bad. So, I am now taking the steps to get back to what I started in February because that method works for me. I will have to methodically stick to my plan because I do not want to take any more steps backwards. This is where the mindset and choices really come in. Life did get in the way for me during the last few months, but that is just an excuse and I know that. Why am I self-sabotaging my journey? Simply because I do not want to do the work anymore. I want to jump on the bandwagon with the latest weight loss craze that is out there.
This is a slap in the face when I am writing about why I am self-sabotaging my journey when I have done so well. No one twisted my arm; I did that all on my own. Today is the day I cooked all my meals with my sister, it is nice to have her here. Tomorrow is the day I will Reset, Refocus, Readjust and Restart. I refuse to give up.