Today was a better day than yesterday however not as good as I am hoping tomorrow will be. I went today and had my MRI w/wo contrast and a MRA. I will be going Monday to discuss my readings. I have always been a very outgoing laughing person. It's hard watching that person morph into this depressed and frustrated woman. I was always the "life of the party" and now I just want to be left alone. I don't like going out and talking to people because I no longer have the ability to get my thoughts out of my mouth. I stammer and back track and just fumble in general when trying to have a conversation. I know what I want to say...I just can't get them to know. The oh-you-poor-thing-bless-your-heart attitudes piss me off to no end. I'm not stupid, people! I learned long ago to control my temper. Yeah, not so much anymore. (can't you tell?) As you can read, my thoughts leap around too. My fingers won't do what I tell them to do. Little boogers. I have been typing for years and now have to watch the keyboard. And still hit the wrong keys. lol. I look at the "T" and press the "R". Go figure. I do the same thing when making a call. Sure hope that symptom goes away, cause if not, I am going to call the wrong person one day :) I got to fall off myporch last week. WEE!! There's nothing like a torn tendon, sprained knee and broke toe to brighten your already dismal day. I would love for some one to tell me how it happened too. I didn't trip or anything. Just went down. Walking one minute, Kissing the dirt the next. My family tries to be supportive. But I end up supporting them. Thats okay though. Thats what we mothers do, right? That's why I am so thankful I found this site. I know I am in a room with people who get it. Thanks, All!
*hug* I think we've all been there, bjs. I put on a happy face to keep friends/family from worrying during the first 6 months after my diagnosis. (My symptoms are daily migraine pain and left side weakness/tremor.) But around month 8, I broke down. I couldn't be happy all the time when I'm in constant pain and always worried about hemorrhaging or having a stroke. I talked to my neurologist, and she decided to put me on an antidepressant to help level my mood. It has helped tremendously.
I try to keep in mind that people just don't know how to respond to this kind of illness. AVMs aren't something many people even know about. Knowing how bad it is and could be throws them for a loop. Like you, I end up supporting the people around me who are brought down by my illness. (And this coming from a non-mother!) Mostly, I just don't want to talk about it at all because I cannot stand getting the pity face. I see that expression and blurt, "But I haven't had a stroke or hemorrhaged yet! So I'm very lucky!" I feel like I have to so the person I'm talking to won't feel sorry for me or just stand there not knowing what to do or say. People respond well to a person who is positive and happy, I tell myself. I know I'm not being fair, not giving people around me a chance to care for me, but I'm just so tired of talking about it and seeing that look.
However you find it, I hope you experience peace soon. This journey is harder on the mind than the body, in my experience. And if nothing else, you've got a supportive community here, always willing to empathize!
Like you, I USE TO BE a happy, out going person too. Now, I'm not near as out going as I use to be and... that's on a good day. My days are planned according to how I'm feeling that part of the day. I never have a whole day that I'm feeling good. Good for me that is. Since I've had this for so long now. I've gotten pretty good at taking advantage of the good moments I do get. Of course, I end up over doing it but, oh well.
I live alone and I own my home. So there's always some kind of work that needs to be done around the house. I've been trying to figure out how I'm going to paint my eaves (that desperately need it) this year since my legs aren't that good on a ladder any more.
Depression is a tough part of the illness that seems to come with the territory. When I get in that mode - I tell myself: "You are aloud to have one day to feel like this. Tomorrow you HAVE TO do something constructive.. You are only allowed one day". That's what I tell myself. Not out loud of course... lol For what ever reason - it works. It's like I'm giving myself permission and heck at the same time. I do my best to keep myself that "I am my own best friend". And if I have to give myself a pep talk and a kick in the but every now and then,.. then so be it (smiles).
Ben
I forgot something ->
I'm sorry you fell of the porch. I don't even want to imagine how painful that was for you. A torn tendon is worst than a torn muscle. I've done them both (at different times) through the years. I hope you are recovering ok from it.
I have trouble with my left leg going out on me because of some nerve damage from the AVM. It just doesn't want to hold me sometimes. It's like it collapses with no warning. And if I stand on it to long it will start to shake (that only takes about 5 minutes). Then I have to get off of it quick or I'll go down. So I can understand you falling and not knowing how it happened. My only indicator is I can tell when it's feeling weak. I have to use a cart to walk with when I go in a store for the support. Even if I'm only getting 1 or 2 things. I keep a cane in my car for when I need it too.
I think the key thing is; not to get upset about it. Ohhh... I did in the beginning of my troubles. Since then I've learned to accept it better and this is how my life is now. I still get some days when it gets to me. But, not very often.
Ben
Thanks, Ben. I am learning quickly what my body will and won't do very well. I am going to tell myself that about haveing that day to feel like that. I have only been dealing with this a month but it feels like 6. About those eaves?...good luck with those.
You are right and I thank you for the support.
Welcome to the group and yes it sucks all the stuff that we used to take for granted like walking correctly and typing...Good Luck on Monday and let us know what the results are from your MRI/MRA
I think its esp difficult for people to understand how we feel emotionally and physically- Also when you have been someone who takes care of others or has always been independent it is hard for people to see us in pain or in need of help and we usually look the same- I had a really hard time telling people no at first everyone wanted to visit or take me to lunch but I had no idea how I was going to feel that day. My husband was great and started to unplug the phone and he would take all the calls and he would say no. I had my angio and embolism Jan 2012 and just within the last month I started to have my old symptoms back so I am going back to the neuros this Thursday...I told my dad on Thursday as we are all supposed to take a trip later this year and we have booked our flight. So just today my dad asked me if I booked a room yet and I said look again I told you I have to go to the doctor and I am probably going to need surgery....
Yesterday I could not stay awake and my husband said oh I bet you are going to get your period and I said no its my avm I could hear it while I napped. I know he is scared too because I had another stroke during the surgery and could not speak again.
It is very frustrating and that is why this site is so great. I can only speak for myself but after my treatment it did get better. I still have to re read my emails before sending and I still have to write myself reminders. But I am back at work full time and walking a mile+ a day. ( I had a stroke pre avm and have left side body issues)
I guess overall I saw so many people during my first stroke recovery that were so bad that even though I have pain every day I try to do as much as I can but not pushing it a fine line...but only did this post angio-embolism
Get plenty of rest and listen to your body. Also I ate lots of Baskin Robbins!
Angela
thanks, Angela. I am learning to say no. Real quick. I do not have a baskins robbins though...:(((. I do have a DQ in the next town though. :)
Oh that is a real shame about no Baskin Robbins...
DQ will have to do plus they have fries! The more you say no the easier it gets and you feel a bit less stressed about your day. Then when you have a good day you can do something that you want to do.
Angela