Loneliness SUCKS!!! (Battling a Chronic Illness)

(This is an experience that I thought I share that happened to me last night.) 12/9/2019

Depression is very scary and the most important thing to do, if you feel that this is you, is to seek professional help immediately.

Here, as I do everyday, alone. Sometimes I feel like I’m wasting away with no where to go and no one to share my true feelings with. It’s true that I live in the house with three other family members who I rely for everything. But even though this is true, everyone has their own agendas, their own lives to live. You see there are only a select group of Snowflakes, Spoonies and Warrior’s who understand exactly what we go through each and everyday and night of our lives. And believe you me, it is impossible to make others understand. This goes for immediate and extended family, friends, coworkers as well as the medical community.

My husband works three jobs to keep a roof over our heads and medical insurance to cover my medical care. It’s hard on me to watch him work so hard. He states, “I do it because I love you.” We’ve been together for 33 years and married for 31. Through our love we have three amazingly talented children: one son, two daughters and one beautiful daughter-in-law. I married very well, but it still hurts to see hime work so hard with very little sleep.

For twenty years I have been battling these debilitating diseases and I never once stated or felt that I was depressed. Lately though these feelings have began to surface. With my ability to function and the ability for my physician’s to treat me decreasing at a fast rate; I don’t know or understand how anyone could not feel this way.

I have tried to use my time wisely during the days by delving into studying biblical hebrew and loving my animals, Most of the time that’s not possible because I am so tired or in too much pain. I feel guilty toward The Most High that I let these emotions in. It feels like I am not placing my faith in him or myself for that matter. All those that know me, know that I have always keep my spirits up and prayed up so that I can help myself and help others who need an ear or a shoulder to cry on. Those that suffer with these invisible illnesses that are incurable, having very little research done to find a cure (because there is very little federal funding or help initiated towards it), as well as doctor’s and their medical communities who have little knowledge about them or even the correct way to treat them.

Much of last night I spent trying to remove those emotions from my system. You see, after going to a doctors visit and being told that another major flare up might be occurring or is active at the present, is overwhelming. This means a new regiment of testing and two infusions are in the works. I end up vented to my family and said some things that should have been left unsaid. My emotions were huge and on overdrive. My husband said that, “It was my medications caused my outburst.” My children stated that my reactions and my statements were crazy or wrong. Words were spoken towards me saying, “I never listened to them when I was trying to get my feelings out correctly.” I tried to get them to understand but nothing would come out right. I truly felt very crazy like I was losing my mind.

I wanted to actually stop being, but Yah stepped in and removed those thoughts and emotions from my spirit. I thank Yah for being omnipotent and gracious with me and granting me with an understanding family.

I let myself down last night because depression is not me. I have never let the Devil in my life because I trust the Most High to much. Always have.

I’ve had the best childhood growing up. Coming from a large family with nine siblings (2 brothers died young); 6 girls and 1 brother. I am next to the baby girl, a.k.a. #5 daughter. LOL 😁 Now my parents, grandparents, in-laws and some of my older siblings are all gone now and that is one of the causes for my loneliness. The youngest remain. The only son and the two youngest girls. Wanting to call them, talk to them, hug them and gain more wisdom from them are what I face all the time. My father instilled in me the moral law and the love of Yahuah and I will always treasure that.

I lost a huge part of my life in fighting these illnesses (Sarcoidosis, Fibromyalgia, Dystonia, Rheumatoid Arthritis, etc.) and the lost of my family. But the loneliness never equated depression. Knowing that death is just one part of life.

All in all, I will continue to fight because I have a lot of fightleft in me. But the overall reason for this post is to inform anyone that is in my position; you are not alone. If at anytime you feel like all hope is lost, reach out and talk to someone, meditate or pray, but mostly reach out and talk to someone.

Peace and blessings to you always and forevermore.

I am,

Marilyn

Happy Birthday Hubby πŸ’œπŸ’œπŸ’œ

20170515_230002The love of my life is celebrating his birthday today. This man has a heart of gold and a giving soul. He is the epitome of a man of The Most High, letting his light shine so that others may see The Most High in him. Those that know Karl or come in contact with him see how humble he is with the gift of music that The Most High has blessed him with. He has taught those that went on to become the best they can be in the business without expecting thank you’s or any form of recognition from them. I think of the story of Joseph when I see my husband in action. You get what I am saying? Well today I celebrate with the man that The Most High has blessed me with and celebrate his excellence.

I love you so much Karl McNeill Sr. I love you now and forever more.

Wifey

Sarcoidosis Caregiver tip 2 {Reference: SarcoidWarriors.com}

C__Data_Users_DefApps_AppData_INTERNETEXPLORER_Temp_Saved Images_needs_a_cure_2_sarcoidosis_t_shirts_gifts_postcard-r9d09a89e126d4962a3b3d6c42d19407b_vgbaq_8byvr_324Caregiver Tip 2
Posted on January 25, 2015 at 5:34 pm
Sarcoidosis can be a very isolating and extremely lonely disease. Even when we are surrounded by people who love us we can feel so alone and it hurts. When your friend or family member has sarcoidosis there are a wide variety of ways that it can affect them. It diffidently affects our physical bodies and can be crippling and very painful which limits our ability do do all the things we have done in the past and still desperately want to do. Mentally it can cause memory loss and a since of confusion which is frustrating and leads to a loss of confidence in ourselves. Then there is the emotional aspect of Sarcoidosis, this can entail a wide array of issues and a lot of the medication we take can increase these 10 fold.

 

This is where my tip of the day comes in. There is no way for you to fully understand and know how it is to feel the way that we do unless youΒ  have this disease. You can however validate what your friend or family member is going through. It is important for you to validate how they feel physically , mentally as well as emotionally. By doing so you show not only your support but also that you truly care what is happening. It is much easier said than done that you will support someone with a chronic illness such as Sarcoidosis. It can take a toll on you as well as it progresses and new changes and health issues arise. It may get tiring to see and hear about the pain and frustration your loved one is going through but that is when it is most important to validate and show understanding. If you are tired of seeing and hearing about it stop and think of how they must feel living with it.

So often what we are going through and feeling goes dismissed and unheard by even busy medical professional that may or may not even know what this disease is capable of. The general public in our own communities know nothing about it and have never even heard of it. This leave a great sense of despair and frustration and leave the burden of validating what we go through on a daily basis on our friends and family. Fair? maybe not but that is the truth about this disease, it does not even know the word fair. I hope that you understand how important you are in your loved one’s life and in helping, supporting and caring for them. Validating what is going on with them and letting them know it is okay to be feeling the way they do plays a big role in that support and in the outcome of our battle.

Reference:

http://sarcoidwarriors.com/blog/?p=100