Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I've mentioned here so many times how blessed I've been to have a wonderful supportive husband. One who helps taxi the children, fix meals, clean, do laundry, etc. when I'm down and sick. Of course, when I'm well I pick up the pieces and help out.
As you all know by now, I just got back out of the hospital. While there they were injecting me with 4 mgs. of IV Dilaudid every 3 hours for at least 16 hours. You can imagine how out of sorts I've been trying to wean off that poison since I've been home. Most days I don't know what day it is or where I am. Moreover, I still don't feel well....(which I'll post separately). I've been very weak barely being able to walk.
Yesterday, I awoke weak, confused and hungry. Problem was that without making a complicated meal there was nothing to eat because we hadn't been to the store. It was 4:00 in the afternoon and I hadn't eaten or had anything to drink all day. My daughter needed to go to dance class and my husband made it clear that he was tied up with work. So, I got up, drove her to class and ran to the store to buy fruit and snacks....Over $100 of easy and healthy food that I could get myself to help build up my strength.
By the time I got home I could barely move and felt like I might pass out. I started to bring in the groceries and put them away. My husband sat in his office. Finally, I yelled in, "Are you going to help?" He stormed in and said, "Sure, God forbid if I do something else than help you and the kids." WHAT!!! I just went to the store and dropped off our daughter so he wouldn't have to...but because I was weak and recovering I asked for his help. As we put groceries away I was admiring the dirty dishes in the sink, the filthy counter top and the pile of laundry growing in our laundry room. Angry, I snapped back..."Well for someone who is helping so much...not much is getting done. It's almost 5:30 and I had to eat a container of blackberries in the car on the way home because your wife who just got home from the hospital had nothing to eat all day AND I took our daughter to dance class so you wouldn't have to. Sorry I'm not well enough to also do laundry and clean the house!"
Fuming he started slamming dishes and cleaning the kitchen. He didn't speak to me most of the evening.,,,except at one point when he went to pick up our daughter. He called and asked if I was going to be upset with him all night. I said "No, of course not. I just need your help right now." Then he proceeded to pass me in the halls and ignore me the rest of the night.
Today he brought me a plate of food the moment I woke up. I said, "You didn't have to do that...but thank you." Angry he said, "Well, I didn't feel like being yelled at today." WHAT??? Then he walked away and when I tried to talk to him about it he wouldn't respond.
I never thought I was a burden until now. This is when I begin to feel like my family would be better off without me. What do you do when the grace is gone???
Khrystine
As you all know by now, I just got back out of the hospital. While there they were injecting me with 4 mgs. of IV Dilaudid every 3 hours for at least 16 hours. You can imagine how out of sorts I've been trying to wean off that poison since I've been home. Most days I don't know what day it is or where I am. Moreover, I still don't feel well....(which I'll post separately). I've been very weak barely being able to walk.
Yesterday, I awoke weak, confused and hungry. Problem was that without making a complicated meal there was nothing to eat because we hadn't been to the store. It was 4:00 in the afternoon and I hadn't eaten or had anything to drink all day. My daughter needed to go to dance class and my husband made it clear that he was tied up with work. So, I got up, drove her to class and ran to the store to buy fruit and snacks....Over $100 of easy and healthy food that I could get myself to help build up my strength.
By the time I got home I could barely move and felt like I might pass out. I started to bring in the groceries and put them away. My husband sat in his office. Finally, I yelled in, "Are you going to help?" He stormed in and said, "Sure, God forbid if I do something else than help you and the kids." WHAT!!! I just went to the store and dropped off our daughter so he wouldn't have to...but because I was weak and recovering I asked for his help. As we put groceries away I was admiring the dirty dishes in the sink, the filthy counter top and the pile of laundry growing in our laundry room. Angry, I snapped back..."Well for someone who is helping so much...not much is getting done. It's almost 5:30 and I had to eat a container of blackberries in the car on the way home because your wife who just got home from the hospital had nothing to eat all day AND I took our daughter to dance class so you wouldn't have to. Sorry I'm not well enough to also do laundry and clean the house!"
Fuming he started slamming dishes and cleaning the kitchen. He didn't speak to me most of the evening.,,,except at one point when he went to pick up our daughter. He called and asked if I was going to be upset with him all night. I said "No, of course not. I just need your help right now." Then he proceeded to pass me in the halls and ignore me the rest of the night.
Today he brought me a plate of food the moment I woke up. I said, "You didn't have to do that...but thank you." Angry he said, "Well, I didn't feel like being yelled at today." WHAT??? Then he walked away and when I tried to talk to him about it he wouldn't respond.
I never thought I was a burden until now. This is when I begin to feel like my family would be better off without me. What do you do when the grace is gone???
Khrystine
It's so hard not to wallow. As I sit here at work, tearing up both because of my physical pain and your honest description of our predicament, I shout at myself "I REFUSE TO WALLOW"... yeah, whatever. Keep saying it Jen. I'd give my top teeth (which hurt anyway) to be able to curl up in bed right now and disappear. I think it's why I'm not around here so much... I don't have much hope to spread. And honestly, I don't think I have it as bad as most here.
Just keep moving forward...
Bax
It's so hard to try to figure out how to make them understand exactly how you feel because there's really no way you can. They just won't get it because who really would? What healthy, normal person would really be able to imagine your body can go through? I know I couldn't when I was healthy.
That being said, you have to try. Apologize to him for needing him but explain to him it's not your fault. Tell him you'd give anything not to be this way. Tell him it makes you sad just watching him be able to do every day things without suffering. Tell him how much you love him and appreciate him and what a good man he is for being there for you.
My fiance has explained to me that he doesn't mind helping me but it does quit overwhelming. He told me that if I could show appreciation more often and be sweet about things it would make it easier for him. Which I know is hard when you feel like crud.
I don't know if any of this will help you because your situation might be totally different. But I definitely do understand where you're coming from. Did you print out the Spoon Theory that someone posted? Show that to him. I showed it to my fiance and it brought tears to his eyes.
-Ashley
I just remind myself that there really is no possible way they can understand. They just can't. Until you go through this, you have no way of knowing what it is like. Even when I'm not pinned to my bed with a pillow over my head crying in pain, I'm still in pain. It doesn't stop. People who don't have chronic pain can't comprehend that.
I know with my hubby, he gets overwhelmed really easy. It's hard doing a wife/mom's job and they don't get it until they have to do it.
I have MS, my daughter has Chiari Malformation/PTC. My husband does all of the "heavy lifting" and he is worn out. So am I.
We fight almost every day. Its miserable.
I wish I had words of wisdom for you but all I can do is empathize with you.
1) Your husband loves you and your family very much. You said that he is wonderful and supportive- these qualities don't disappear for good as the result of one bad incident.
2) You are better at balancing all of your tasks than you believe. Even though you are still fighting off those pain meds, dealing with regular PTC issues, and are still weak- you managed to get up and get going when your daughter needed you to be there. You went grocery shopping to get food for the family- I'm sure that isn't easy or fun in your state, but you did it anyway.
So really, the grace isn't gone, it's just going through a bit of a blind spot :-) One thing I have learned about PTC is this: there is no perfect way to handle it. You'll mess up , get in some arguments, shed a lot of tears, but hey- odds are that tomorrow will be better.
http://www.aamft.org/families/consumer_updates/chronicillness.asp
I wish there was an easy answer. It is never easy for our family to understand what this Shi##& disease is like and it is hard for us to understand what it is like to watch someone you love go through this disease. Keep trying to communicate what you need and how you feel. You can only do what you can do.
Heres hoping tomorrow is a better day!
Emerson
if you haven't printed that yet, give it a try...
hope it all works out well for you...
Your situation brings me to tears. I wish I felt good enough, and had the money to come and help you. I can relate big time. Please go play the lotto or powerball, something today. In the news, I heard that chick won 4 big jackpots, 4 seperate times. What the hell!!!!!!!!!!!!!! We need that money, that way we can hire a housekeeper, cook, and nurses. Then our families don't have to be burdened.
hope your day goes better!
ky
My thoughts exactly!! a lot of my problems is I tend to dwell on hurtful words/actions as a way to measure to what extent he will be fed up w/ me and leave...
Thank you all for your supportive messages and uplifting words.
Much love,
Khrystine
You are such a strong woman and thank you for sharing your story. You handled it the best you could given how you were feeling and I'm not sure how I would have handled myself either given it all. We try so hard but sometimes we only have so much to give. So many "spoons"
My husband is always so giving and generous as well and I worry about the continued stress I put on him with this disease and ask myself "why me?" some days ... but like you, I am human and have bad days and need support from him and my family.
Hang in there.
Sending hugs and prayers your way -
Mandy
Well now ive vented, i hope we all can find our strength thru all of this.
good luck adn best wishes to all.
ky
I've made mistakes in my life, I've let people take advantge of me, and i accepted way less than i deserve. But, Ive learned from my bad choices and even though there are some things I can never get back, and people who will never be sorry, Ill know better next time and I wont settle for anything less than I deserve.
Im selfish, impatient, and a little insecure, I make mistakes, I am out of control and at times hard to handle but if you cant handle me at my worst you dotn deserve me at my best.
and finnally
Just because someone doesnt love you the way you want them to, doesnt mean they dont love you with all thay have.
just felt like i had to say this.