It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.
You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope. You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.
It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.
I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.
Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.
I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.
I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”
Today was far from perfect, never the less it was a blessing. You did your best which is all anyone can expect. Every day you are faced with many obstacles, which you gracefully overcome with determination. You might feel like you are dragging your body through the day like you are going to collapse from all the pain. Yet every day you accomplish so much. You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments.
Be compassionate to yourself tonight. Take a few moments to reflect on all your amazing accomplishments and blessings. Do something nice to recover from this long day, take some me time. You needto be nice to yourself it not only benefits you but also those around you.
You are an inspiration and a blessing to many people my friend. Your friendship is priceless and very precious. Everyone you encounter is blessed by you. Bless by your smile or your kind words. The strength you display is yet another blessing to others. Inspiring them to be strong in the trials they face. You bless many people daily.
I pray that the Lord would be with you this evening as you unwind and prepare for bed. I pray that you would fall asleep quickly, stay asleep through the night, dream sweetly, and wake up with a lot of spoons.
Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device.
I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all.
Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.
Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us.
Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid.
Too often we hear phrases like:
But you don’t look sick
You need to be more positive
Have you tried…
You’re too young to be sick
It must be nice not having to go to work/school
You’re just having a bad day
You need to get more exercise
It’s all in your head
Maybe if you got out more
These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright
Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤
Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!
You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break. Get some rest. Keep fighting to make today the best day possible.
You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.
Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.
There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.
I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!
I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.
I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.
During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.
I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.
New Year. New Semester. School break has a habit of flying by. This is my second semester at Liberty University Online. Once again, I am taking twelve credits. The first eight-week term I am taking Introduction to Christian Counseling and Psychology of Personality. The second term I have Philosophy and Physiological Psychology.
My plate is full, in my personal option. I have my Remicade infusion at least twice this semester, two follow-up appointments, and a new doctor visit. Additionally, as you know I assist in leading two Bible studies online as well as running a weekly event Bible Study Live. I teach Sunday School and assist as much as I can with the children Thursday evenings. Of course, I spe nd time talking to my friends, reading, time with my family, and working on Chronically Hopeful.
Even with being busy, I keep school as a priority. I have gotten school planning down to an art more or less. Organization is key. I am thankful that my professor upload the syllabus the Wednesday before classes begin. This gives me plenty of time to do my insane planning. Once I have printed the syllabus and class schedule out I write down my two-week goals list.
Around Sunday I write down in my planner what needs to be done each day. Currently, I have The Happy Planner. I decorate the pages with various colors, stickers, and Bible verses. From there, each night before bed I write everything on my white board so that I don’t forget to look in the planner for what needs to be done. It might seem a bit complex, but it works.
If you already have your textbooks for classes, I recommend at the very least scanning the first two chapters. Ideally, if time allows read these chapters, you will thank yourself later.
Lastly, I want to share with you some Bible verse that I am praying over this semester.
“He has filled him with God’s Spirit, gifted him with wisdom, understanding, knowledge, and skills with a variety of crafts” Exodus 35:31
“The wise will pay attention to these words and will grow in learning, and the discerning will receive divine guidance” Proverbs 1:5
“Now to the God who can do so many awe-inspiring things, immeasurable things, things greater than we ever could ask or imagine through the power at work in us” Ephesians 3:20