As I am sitting outside in this ridiculous heat this afternoon, watching my dogs play, I am just thinking to myself. Thinking about a lot of things. I generally share just about everything with this journey, but not necessarily how I feel as often as I should. Symptoms and day to day life is only a small part of this journey. How I feel inside is another story. This is me. All of me. And I am sharing it all with you.
I wrote this little piece during the wintertime in 2013. Before I even thought of writing a blog to share my story with the world. Writing is my therapy (I highly suggest it to anyone, it is a GREAT release, even if you keep your writing to yourself), and that was one of the few things I could do at the time.
Sometimes on a good day I wish that I could take two baths and be set for the week.
Sometimes when I am by myself, things flow through my head. My childhood, my adolescence, things that I have blocked out from my memory. Antibiotics are killing the bad, but are bringing back things I wished to have forget.
Sometimes I sit on the couch and have to go to the bathroom so bad but the thought of getting up is unbearable. So I hold it. And hold it.
Sometimes I get so lonely I cry. I know I am not alone and people are there for me, but I spend a lot of time by myself now and I am a people person.
Sometimes I get so angry because people say all the wrong things to me. Stop acting like you have any clue as to what this past year has been like. I am amazingly strong. Stop giving me your doctoral remedies. Stop telling me you are tired too.
Sometimes I make sure I spend all day on the couch, and load up of seizure meds and Ativan just to be able to sit through dinner, and feel terrible the next several days, but know it is totally worth it.
Sometimes I feel so unbelievably blessed to have the people in my life that I do. It has taken some sorting, but I got all the good ones. I got the good guy.
Sometimes I look in the mirror and see a pale figure with big raccoon circles and a line sticking out of my chest. I try to fix it with makeup but nothing will fix it, and my hands are often to shaky to do eye makeup. I cannot recognize myself anymore.
Sometimes I can’t believe I am losing my mid-20’s, spending everyday sick, taking dozens of pills and having spent months hooked up to IVs.
Sometimes I get so angry. I am angry at this disease, how it has changed my life. How I feel like I have lost control of my body and my mind.
Sometimes I get scared of the future. I wonder if I will ever be the same.
A lot has changed since then, but some of those feelings are still very much the same. The past week or so has been rough emotionally. Some of this is treatment, causing a lot of bugs to stir up bad feelings, but a lot of these things have just come back to me. I go through this every few months. This is one of those times.
I felt like my husband was sick and tired of me. I know this is not the case at all, he loves me more than anything and is in this for the long haul. I have this overwhelming feeling of loneliness that I can’t seem to get out of my head.
One word of the wise: Never go on Facebook when you are feeling down and lonely. You will see people out and about, with their friends, enjoying life. Although a lot of those things are staged to make one appear to have this amazing and exciting life, it still stings a little.
I have learned throughout all of this that many people I considered friends considered me an acquaintance. It is not exciting to visit a homebody. Understandable. Watching that type of friendship that I miss exacerbates that lonely feeling.
Some of my best friends have hurt me, disappeared, or even had what I thought was one of my best telling others I am faking this disease, pick and choose what I want to do, and even told others I brought a grand mal seizure upon myself. Yeah. Ok Bub. I snipped the fat, as I like to call it, and they are no longer a part of my life. But I still mind myself missing those connections.
Even though I have come a long way I know I still have extreme limitations. It is frustrating, and it angers me beyond belief. I want to go shopping, drive wherever I want to go, dance, sing again. I want to be able to go do outdoorsy things, but I still am not there quite yet. I KNOW I will get my blue skies back, but I still wonder WHEN. This isn’t a sprint, it is a marathon. This is a long and terrible journey and I wish no one to know how it feels to have lost feeling of control of their body and mind, their loss of independence, financial burdens due to illness, strain on relationships with family and friends and the loneliness. I am extremely grateful for the things and people I do have in my life, as many live and have lost far more and worse than I.
I will leave this on a positive note, as I do what I can to remain positive and never forget the butterflies, rainbows, and unicorns :), and advise you to do what you can to stay positive. Hold onto the good, always remember the good.
Know that by hitting rock bottom the only way is up.
I look at my rock bottom, when I reached a point I never knew if I would never wake up one day, and I realized I had to hold on. The only way to live was to have hope. To be positive. Always remember the good. It has helped me get to where I am today.
One of my friends on a recent dark day told me to remember how far I have come. She was completely right. And that’s what I did. At one point I could not run an errand, I needed a wheelchair, had organ issues and my blood work caused much concern to my doctors, was severely neurologically impaired I had tics, a complete loss of memory, seizures nearly every day, lost feeling of my feet and legs, could no longer bathe myself, and had spent many days sitting in a daze for hours and hours without a memory of it. The list goes on and on. I had completely fallen apart.
I have more and more glimpses of a normal life. Things are looking up. What I can do now is amazing compared to where I had been. Remember hitting rock bottom the only was is up! 🙂 Remember how far you’ve come, and the bad days will seem a little bit easier.
Love yourself. If you don’t you will never have the strength to get through this all.
Push through it and never let this disease win. You are not defined by this disease.
Fight to do what you still can, there may be consequences but I promise you it is worth it.
Stay positive. There is hope, even when you feel like there is none and things won’t get better. They will get better. Promise. 🙂 Positivity will get you through everything, and it is an amazing medicine.
Maybe this letter is a little bit to myself but in the end of this, I haven’t forgotten to love myself and to be positive. There are only good things to come with this long journey, and a new journey will begin.
Hopefully this serves all of you well that are living in this nightmare. Never lose hope. There is always tomorrow. 🙂 xoxo