I am sorry it has been so long since I have posted anything. This past month has been so hard for me. Long story short, I am going through a period, where I deeply grieve myself. I am in mourning for the person that I used to be. Seems that as time goes on, I lose more and more of my independence. I have gotten used to using my cane. I do not need it 100% of the time, but I was told by my doctors that I have to have it with me at all times to help with stability. My right leg completely gives out without notice. I have times that I am very unsteady on my feet. I get so light headed and weak within 2 seconds of feeling normal. My driving is very limited. My house is a big mess, but I can only do a little each day because I don't have the strength or stamina.
I have cried a lot this past month. I am struggling. I am so very scared, because of the unknown. Changes are happening so fast and I feel so helpless. I know we are all going to die one day, but I don't want to die yet. I have high hopes that I won't, but I am also realistic. When it is my time to go, I have no control, and I will have to say my good-byes. I pray that I will be around for at least 20+ years. It is hard to explain because mostly everything I am struggling with, is internal. You can't look at me and automatically know that I am sick. When people see me and I am wearing make-up, hair is done, and my brave face is on, people always say "you look so good". It is easy to judge by outward appearance. So, I will share with you, what I posted on my FB page "Making the Invisible Illness, Visible".
Remember the old saying "Don't judge a book by its cover"? With all my invisible illnesses, I sometimes feel like I am being judged by how I look externally, and not how I feel internally.
We all have our own battles. No one person's journey is the same as another's. We are all individuals. So why judge or push something away that you don't understand? Why not take a couple minutes to stop and think before assuming? I am a work in progress, I am not perfect, nor have I ever claimed that I am perfect. I can say that I truly care when I ask how you are doing. I don't want the answer everybody expects, "I'm fine". I want to know how you are really doing.
As a chronic illness warrior, I have mastered my brave face and I do my best to keep pushing forward, but there are days that I literally can't get out of bed and I hate days like that. I want to be with my family. I would love to be able to go to work. I would love to have more control of my life, but at the moment, my body has more control, but I am fighting it. I refuse to give up. I rely on smiles, laughter and sarcasm to help me cope. Am I brave? I try my damndest, but I do have my days that I don't have the strength. There are days that I am so scared that I just sob, secretly, behind closed doors when nobody is around. Whether you are strong and brave or weak and timid, we are all deserving of love and compassion.
Please don't assume, that as chronic illness sufferers, that we are fine. We need love, strength, compassion, and support more than ever. Take it from me, living with chronic illnesses can make you feel pretty damn lost and alone. One day you're working and feeling great and then BOOM! Next thing you know you are being told that you can no longer work, your driving is limited, you have to have a cane to help with stability, you have to depend on others.This has been so hard for me, because I am an independent person. I love to help others, but I have a hard time accepting help. I want to keep living my life as before, but realistically, I know that I can't. I carry so much guilt, pain, sadness, etc. because I can't be the person I want to be. I am a go getter. I truly loved my job and I miss it so much. I am mourning me. I am not the same.
The thing that has been hardest for me, is my short term memory is not the best. I have a hard time speaking. I can literally forget what I am talking about mid-sentence. It is utterly humiliating and oh so embarrassing. Going from a girl that could pretty much remember anything to a girl that forgets everything, is so humiliating! I will wake up sometimes and I won't even recognize my own surroundings, at all. I am completely disoriented. Frequently, I have to ask somebody what they are talking about when they answer a question that I asked. The person then has to explain what my question was, and sometimes I will remember the answer they gave me and other times, they have to repeat the answer also. It has been so hard for me.
So much I want to do, but I am not giving up. I keep pushing. I will fight until the day that I die. I will continue to smile and make the most of what is given to me. I don't like to dwell on the negative, but someday's I have a pity party, to which we are all entitled to, but I don't let myself stay down. I get back up and fight and push even harder. I choose to look for the positive. I choose to seek what I can learn from all this. I choose to be my own advocate, and I won't give in until somebody will listen to me. Those of you that know me well, know that I am persistent and I back up my persistence with research, studies and facts. I am not only fighting for myself, but for all the chronic illness warriors out there.
-MrsWelches
That is a quick run down. I will update more , hopefully, tomorrow. Please pray and hope for an end in sight of this wild ride. I am getting motion sickness and just want to land with both feet safely on the ground. I am a fighter and I will fight until the day I die. I refuse to quit and take no for an answer. My current challenges:
- Intractable, chronic daily migraines
- fibromyalgia
- Reynaud's Phenomenon
- Sjogren's Syndrome
- Depression
- Several different types of anxiety.
- Painsomnia
- Gastroparesis (my stomach is paralyzed, and it takes forever for food to move through my digestive tract)
- Mysterious blood disorder that I am being worked up for
No comments:
Post a Comment