The ways my life have changed.. Just a vent.

I've been really struggling. Some of you have been keeping up with me and so kind to always offer advice and a ear. I thank you for that. Really. Feeling connected to others sharing alot of the same worries and stuggles make me feel less like a failure in those really dark times.

Life used to be so different. I was always a little sick. Just sick enough that it would put me in a grumpy mood but I could still accomplish whatever I needed to. I was a good mom, I really was. I was up at 7 am every morning making pancakes and eggs for my family to enjoy when they woke up. I was the one that made the coffee everyday. I kept the house and yard sparkling clean and organized. If there is any testament to the disarray my life has become, just walk into my house. Dishes are piled up, there is laundry on the floor of every room, the floors are so dirty our feet turn brown. I had some serious OCD about the house being clean. I felt like it was a reflection of how well I was taking care of my family. I really saw it as a reflection of my health. If I could keep up with the animals, the gardens, my son, the house...etc. then everything felt like it was ok.

Now I feel good if I take a shower once a week. Seriously. I can only wash my hair once a week. I'm too weak. I'm in too much pain. I'm just too dang sick. My son will want to go outside and play and I'm too tired to sit in a chair and watch him. My body wants to crumple into a ball in my bed. Some days aren't so bad. Some days are the worst. I'm miserable, and no matter what this is going to be a long journey.

I've been mourning the loss of my motherhood since last September. I remember it SO clearly. My mother in law showed up and she asked if everything was OK. I said yes. And she said obviously not because I'm laying in bed, and my house is messy. She noticed the state of things around here and knew something was terribly wrong. I was sort of in denial. I thought I was just having a bad few days, and things would return to normal. Well, it's July and I'm still in bed. And my house is still a mess. And I still can't always take care of my son.

I've missed out on important events of people that I love and care about deeply. I've missed out on being a wife. I've missed out on being a Mom. I feel stripped. I feel broken. I'm spent. I've been in bed not even able to notice at all times that my life is LOUDLY passing me by. I'm a fighter by nature. And if I've learned one thing about Lyme disease, it will kick you when you're already down. I've been drowning under the pressure to still keep up. To still be a Mom. To carry on. It's an impossibility. No matter what way you look at it, when you're this sick it's not a matter of having a cup of coffee and getting on with your day. As all of you know too well.

My guy told me yesterday he talked to an older gentleman in the family restaurant that hes known since he was a kid. The man asked him how he was doing and why he hasn't been working as much. My guy told him that I have Lyme disease and he's been home more to help take care of not only my son, but me. The man replied "That's one of those things where the nice thing to do seems to be to let them watch one more sunset and then take them out to pasture.". Wow. People do know, there are people out there that know how terrible this is. Needless to say my guy was really sweet to me that day.

But another thing has happened on this journey that I'm not super proud of. I've let my defiance bleed into my relationships. I've become a recluse. I don't answer my phone. I don't leave my house. I've never had very many friends, but the ones I do I have consider family. They stopped calling and reaching out a few months ago. I'm happy for that. It's too painful to try and be my old self right now anyway. My relationship with my guy has suffered. I've accumulated a reasonable amount of resentment and I'm too the point now where I'm done trying. I was a caregiver for my Mom for her last 5 years. I know how bad it sucks to be on that end. I really do. I've heard that it's my fault that he is stressed and struggling. I've been told that I need to just do certain things at certain times. I've listened to my kid be yelled at because his Dad didn't feel like making him a priority. I've been ridiculed when the medical bills come in. I feel a bit walked on. And lately I cringe when he walks in the door. I've NEVER had anything but a sense of relief when my other half came home. Ever. Until now.

So. Ya. I'm just here. Miserable and confused. I live with an incredible amount of pain and suffering just like all of you. Like I said, I'm struggling to keep my head above water. I have my guys employees offering me their teenage daughters to help me with my son. Which is sweet. But it makes me feel like crap. Where is my family? Where are MY people? Why aren't they here helping me through what is likely the hardest part of my life so far. Ugh..... I don't like "lately". Things have flipped even more in my home life. I'm so out of balance. I'm so consumed by stress and guilt that I'm not taking care of myself. I'm in so much pain that I end up writhing around for hours just trying to muster up the strength to get my butt in the kitchen and make some tea. And then I walk in there and the counters are so crowded there isn't enough room to set down a teacup! AH!

I feel abandoned. I've been guilt tripped beyond belief. Another thing I've learned, never tell a sick person that if they really wanted to get something done they just would. Don't tell a sick person to "just be positive" and things will magically get better. And please don't tell a sick person that they should be happy just because it isn't cancer! I don't care what you are sick with, if you don't feel good on a daily basis for months or years it's going to effect you on many levels. I don't care if you have cancer, lost your legs, have lyme disease, or even just the flu! If you are sick you deserve compassion.

I have little to no community left in my life. Everyone I know just got used to me being sick and stopped talking to me. I've been branded with this idea that I'm like half a person or something. I don't necessarily want to be treated like some sort of princess. If that's the message I'm conveying it's certaintly not intentional. I'm still human. I'm still ME under my illness no matter how consuming it has become. My self worth should still matter and be respected. I'm treated like a piece of trash at home lately. My brother tells me I'm sick because I don't wake up and eat a smoothie within the first 20 minutes of getting out of bed. That's what helps him and makes him feel good, so I should do it too. My guy tells me I need to see a nutritionist because maybe my body is lacking just one certain nutrient and if I start getting it I'll feel better. And then I'm berated when I question their logic because they are just trying to help. I have a very open mind. I'm not dismissive or argumenative. When they are reminded how silly that sounds when I literally have bugs in my brain making it swell and turning me into mush they attack me. It's my fault they say. I haven't tried hard enough. The only message that I get out of that is they are mad at me for being sick and they think I'm failing on purpose.

And I'm about to cry. I need to go pet my dog.

IHL - take the help with your son. They can play with him in the yard, and you can sit and watch, if you're up to it...or better yet, you can go lay down...
It would be nice for both you and your son.

I'm so sorry you have been suffering tremendously with this for too long! You are so strong, IHL, I know you don't always feel like you are...but believe me...you are a fighter, and when I read your posts, I think to myself "what the heck have i got to complain about?"

So, just keep fighting, keep posting here, vent all you like...have a good cry.

I think about you a lot and hope that you see that light at the end of the tunnel, soon. It will happen for you...

U don't deserve this, but u will emerge, butterfly girl. Keep writing. X

I'm sending thoughts and prayers your way. Your story is very touching and hard and I just want you to know you aren't alone and you will get thru this.

I'm so sorry for everything you are going through, and the lack of compassion and help you are getting. These illnesses are utterly brutal, with people judging the sick person, or questioning their will and desire and toughness and seeing their inability to get better quickly as an indictment of the sick person's will and toughness. This has happened to me, not often, but it is truly infuriating and really tests my philosophy of striving to be a compassionate, kind, loving person!

We are working as hard as we can to get better, but sadly there isn't a quick perfect fix and this is hard for many people to understand. They assume that if they were in the same position they could just will themselves back to health! The depth, breadth, and monumental brutality of these illnesses and all their intractable symptom permutations is mind-blowing. Before experiencing this I could never ever have imagined such an existentially brutal chronic surreal illness existed that could just torment the hell out of me like this. Life is, uh, surprising, to say in the least!

But it's so insulting when people question your toughness and desire to get better. I am a fighter, an optimist (but the illness tests this one for sure haha!), and fight this thing with absolutely everything I've got.

It is hard illness for family to deal with. In my case I have a great family and rely on them a lot but even so I still have to sugarcoat the degree of pain or severity of symptoms to keep giving them the impression that I am making linear progress. I'm lucky that I'm well enough that I can somewhat mask the worst parts when symptoms get bad, that is not a luxury everyone has in these situations.

Now, I have made a lot of progress, but there is still a ways to go, with a lot of fighting still to take place, and I have to be careful because I don't want to dishearten my family as they have been somewhat mentally exhausted by my health journey.

I'm sorry to digress into my issues, don't mean to be so self-involved but it is rather therapeutic to talk about. But your story really struck a chord and I just want you to know I'm thinking of you, sending you healing thoughts. Keep hanging in there, things will better!!!

Btw, you mentioning feeling branded like half a person, I hear that. Branded by the scarlet L. Well, maybe more like a Lime colored L. My illness has often made me feel invisible, a pain-ridden cipher that can only watch life dance by. But things will get better, so long as we work on treatments and see progress there is good hope for us all :)

Big big big hugs!

Post Edited (sebreg) : 7/5/2015 8:01:39 AM (GMT-6)

I'm really happy that you shared. It makes me feel better. I love this forum for that.

When I feel like an outsider in real life I can come here connect with people that know exactly what I'm talking about. I can open up the valves on the parts of myself that I so desperately hide from everyday..

I'm happy to report that things have become a little less hostile. Like I said, I'm going to have to work really hard not to hold onto resentment.. they are going to have that same battle I'm sure.

It's a slap in the face for me really. I always took care of everyone. That was my duty and I was good at it. Taking care of my mom gave me purpose. To be on the other side of that is complete torment.

I'll continue to send all of you lots of prayers and we'll wishes. I can't wait to be able to tell a different story. I'm sure you guys all get that.

To health!!