Venting Time/frustrated/been In A Down Mood Two Days
AnonymousNovember 12, 2006 at 4:32 pm
Maybe it will hellp me if I talk to my family here. When I was able to go to the symposium, I felt like I could move forward, that I had a life!!! Then I come home and back to a nothing life of being quite homebound with very little fun. I get sooooooooo FRUSTRATED the tears come. I have the potential of walking again, but at home, because I am caregiver (not the only one) to my mother (87), my MOTIVATION is almost non-existant. I need to get out and get back to PT (vital for me) and I’d love to do pool therapy, but have not been able to work out transportation yet. Family does not help me, accessible transportation will not work. Senior Citizen Center recently purchased wheelchair vans, so hoping that will work for me and meet my needs.
I do have a few pictures of symposium, but printer dock either jams the paper or won’t pick up and I don’t know how to plug in USB cable so I can download into computer. No-one to help me, this frustrates me to tears.
AnonymousNovember 12, 2006 at 5:46 pm
Oh Liz …….
I’m not sure if you still have my telephone number, but you can give me a call anytime. Isnt it strange that when we are down, just everything seems to add to that feeling! But on the other hand, when we do take the opportunity and reach out to our ‘family’ on the forum, sometimes that burden is eased just a little bit. Sending lots of love your way Liz 🙂 .
AnonymousNovember 12, 2006 at 8:58 pm
I have to tell you I had so much fun in Phonix also. I came home to the day to day tasks that aren’t as fun. I know I learned alot and felt like I had so much to do and where should I start. I changed in home infusion companies, scheduled Abby for a specialist concerning her bladder problems, got some of her eye testing done, but haven’t gotten to the PT or Ot yet. I just feel like I learned so much but it doesn’t help Abby unless I follow up on it. I made a list of things I need to do and follow up on and just priortize what I need to do first.
I think the symposuim gave us all a big pick me up emotionally, just being with others who understand everything we are feeling and experiencing. We are a nice big family. Going back to dealing with people who don’t understand is tough.
I have someone to help with the computer! You know me I am a very sharing person, right? He comes with excellant creditials and works well with all types, even me. It is my husband ,Tommy. He is able to help me on the computer and I didn’t even know what “snail Mail” was! Send me your phone and we will get you going on the photo part.
AnonymousNovember 13, 2006 at 5:57 am
I am sorry you are feeling down. I can relate to the frustration of not being able to get out of the house and being dependent on other people to help you. And if you don’t get the help you need it is even more depressing. That’s a big contrast with the warm feeling of sharing and having fun with fellow-sufferers at the GBS symposium. I thought you were so brave to make the trip and admired your determination to just go and have a good time. But even if it was very uplifting, it must have been tiring as well and it doesn’t surprise me that you have a setback right now.
I really hope the wheelchair van will be a good option for transport. Take care of yourself and my thoughts are with you.
AnonymousNovember 13, 2006 at 11:43 am
I am sorry you have having a bad day and not being able to get out of the house. Yesterday my boyfriend went hunting to a preserve with my brother in-law and my puppy. This is the thing that I really miss that I cant do and I wished I could have gotten out to see her work but that is not a reality for me (yet). My boyfriend is working on a contraption for my wheelchair that will allow me to get out hopefully. Anyways… I woke up in the morning with my boyfriend gone already and thought it would be a great day to go to the movie theater by myself (I enjoy going alone). But then realized I couldnt cause I am not cleared to drive yet. My boyfriend got home and I mentioned this to him and he said that we could go if I wanted as he was falling asleep saying it. I told him it looked like he couldnt stay awake to go and he said that he would go cleanup if I wanted to go… I told him that yeah I did want to go… He goes downstairs (I assumed to cleanup) and comes back upstairs still wearing his hunting clothes and brought 2 beers up with him. It was clear he didnt want to go. A few hours later he complained about what I was watching on TV and I responded with how he got to go out and do what he wanted and I was stuck at home all weekend. He gave this look like he didnt know what I was talking about and said we could go to a movie still if we wanted. As I am looking at the movie times he rolls over on the couch. It was only about 7:30 but the next movies didnt start till 9:15 so it was clear he wasnt into going. I say forget it, grab my crutches and go to take a shower at which point he says that if I really want to, we can go. I just went to the shower and cried for a while.
I take my drivers eval on Nov 22 and if I dont pass then we will be talking about hand control options. My right foot is doing pretty well but my left is not, luckily I dont need my left for driving!
Anyways, sorry to be so long winded but thought it might help to see someone else going through these frustrations as well.
[B]codystanley[/B] – With regards to your computer difficulties, I work in the IT field and can help you get things hooked up and working. If you want my help them just PM me and we can get going on this. I am not a person who tears apart a computer in their basement and claims they know about them… I have a college degree in computer science plus a few different certifications and have over 13 yrs in the IT (Computer Science) field.
AnonymousNovember 13, 2006 at 12:57 pm
You actually have the training on this stuff, my husband just loves being what the kids call”a tecno nerd”, sounds so loving .
Check out doby and Tommy and see who has better customer service, I know Tommy is funny, a plus when computer aren’t working.
AnonymousNovember 13, 2006 at 1:50 pm
you are truley not alone!!!! Rountine, Routine……i have always been the doer in the family. Nothing gets done unless i do it. i am the caregiver in this house and it makes me mad, sad and unappreciated all at once, a real roller coaster. For example, lastnight i was sitting in the chair crying, my legs were on fire. My husband came through and said what’s wrong? i told him i hurt and he says “go to bed”. i told him it doesn’t matter where i am, if i “go to bed” the pain is still there!!! The family under my roof does not have a clue!
My son thinks since i slept most of the day one day then the next day i should be fine, he is 20 and i am ready for him to be finished with college and move out! I know i am not a bad mother because i have done my job, i am sick, it is my turn for rest!
sorry for the long complaining, i was just feeling it. Liz you are not alone, i promise!!
AnonymousNovember 13, 2006 at 2:32 pm
I know the feeling of being almost homebound. I was that way for the first 3 winters after I got sick. My life consisted of infusions, doctors visits, dentist vistis, etc. But I was lucky that I did have my husband to take me to these places or anywhere else I really wanted to go. I had a wonderful summer & it is hard to go back to being stuck in the house so much now. I think we all experience that after going out & having some kind of vacation. Then it ends & we are back to the monotony of our lives. I think the only thing that has saved me is going to water aerobics twice a week; for me it is a real social thing as well. Getting my driver’s license back also gives me that feeling of having some freedom, even thought I really choose not to go out that much alone. But it’s the knowing I can go, I guess. Whenever you feel down, just give me a call & you know I will call you right back.
AnonymousNovember 13, 2006 at 11:53 pm
liz, you know i am sending you cyber hugs!! vent anytime!!!
lisa, are you in my house?! only my kids are 13 and 8 and my husband is right there with them as far as thinking is concerned! when i cry when i’m in pain he says sorry and rolls over and starts to snore!
BIG HUGS EVERYONE!!!!!
AnonymousNovember 14, 2006 at 1:36 pm
cuddos to you….. i could not image being sick when my kids were that age. i would have to hurt somebody!!! i wish you much luck EVERYDAY..I am able to go to my craft room and shut the door. I will scrapbook all day or lay down and take a nap. Door shut means leave me alone.
As far as computer, my friend is wanting me to go with her to a class at our local college. She said she would pick me up and take the class with me. i think i will take her up on it as i am not too computer savvey……..
My husband did just buy me a new computer and hooked it up for me and my son does computer work for a living and that is what his major is at school, but getting help is another story all together!! ha.
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