The Lupus Forum banner
1 - 9 of 9 Posts

·
Registered
Joined
·
1,640 Posts
Discussion Starter · #1 ·


Hi Friends,

Warning, this may be a ramble and a boring read. I am wondering what is with me lately? Can anyone realte to this?

Lately, my social skills are terrible. I know, the Cell Cept is helping my brain problems a lot, and with head pain, especially. My thinking problems are gradually getting worse, however. I am forgetting more and more. I feel terrible because, I can't remember my family member's birthday's or to make appts. I got lost in the car the other day..That! was really frightening.

I called my Psych Dr. and they got me in fast, because, I am bursting into tears again, at most innapropriate times. I am very unstable. It is embarrasing for both myself, and those around me. My Dr. put me on Valporic Acid. I have taken it in the past, and it did help my mood, but I got terribly plump taking it. I am desperate to be stable, so I am going to take it anyway. I wonder..though, if I am destined to get progressively worse in my thinking? I try to reach out to others, and somehow, I am not connecting. :(

I can tell in conversation, that I am irritating others. My husband and my Dr, both told me I don't make sense sometimes. I was explaining my mood instablity and thinking problems to my Dr. and he asked me if I ever got lost
while driving. I told him the truth, and he told me he thinks I should stop driving! :( :( I already feel isolated and lonely. I try to busy myself with my hobbies and try and tell myself to pretty up my surroundings, even if I feel bad...I always, have the intent, but, just can't do much without getting exhausted and suffering pain for days..afterwards.

We are in the process of packing to move..Just last week, I was contemplating painting my current home. I am two blocks away from two of my grandchildren now, when we move..If I can't drive, I will seldom see any of my grandchildren..They are the light of my life!

My husband still works full time. How am I going to get to the Drs? I have an appt. on average every two to three weeks. I know I am not the first to work these issues through...but, at the risk of sounding self pitying. I am overwhelmed!

I think, I have lost all social skills. I don't trust my mind anymore. I can't track often..in conversation. Someone can be talking to me and I don't hear them. Why? Is this just Lupus progressing? I asked my Neuro if I am getting dementia and he said I had no brain shrinkage. I feel lost and well...I guess, you can guess. Sorry, If I am depressing you...

Any ideas for adjusting? I don't want to be a burden, to my husband. I can't rely on my children for help. They all work full time, and have struggles of their own. I'm just not sure what step to take next..

I hope the Valporic Acid mixes with my current drug mix. You know..how it feels..

Yes, life is still good. It is just not always very easy! :wink2:

Love,
Sandy
 

·
Moderator
Joined
·
11,410 Posts
((((Sandy)))))

I am sorry you are feeling this way. You have been so busy packing. That alone wears a person out. Preparing ones self for a move is a very hard task. I hope you are taking time out to rest. Have you thought of hiring a company that will come in and pack and move it to your new house? That would take a lot of stress off of you.

Fatigue plays a big role in how we function. I know how much it bothers me. It effects my thinking and engery.

As far as driving have you thought about getting a GPS for your car? We have one. You can program where you want to go and it tells you when to turn, what lane to be in for the turn. If you hit a button on it, it can tell you your exact location.

Please take care of yourself.

Lots of Hugs and Love,
Lyn
 

·
Registered
Joined
·
4,444 Posts
(((Sandy)))

If it makes you feel any better, your post made perfect sense to me. It's very understandable how you're feeling. I felt connected to you just from reading your post...

It sounds like you're doing all that you can to start feeling/getting better. You're being honest to your doctors, taking medication, etc. Sometimes these can be temporary blips, that come and go on their own and other times medication can help. I am hopeful for you that it'll start getting better sooner rather than later.

If that doesn't happen, then there are professionals out there that have tips on organizing/managing life so that you don't forget things. I can't rememeber the name for these professionals right now (go figure!), but they help people recovering from brain injury after car accidents for example... An old neighbor of mine used their services following a pretty bad brain injury/car accident and found it very helpful. In fact, in short order you'd never know he had such a severe injury! So you could inquire about that if the med change doesn't help soon.
 

·
Registered
Joined
·
1,640 Posts
Discussion Starter · #4 ·

Ladies,

Thank you so much for your posts! It is amazing how just the thought of someone caring..makes so much difference in our ability to cope, sometimes.

I will adjust..I know, I am crying too..becuase, my dear dad has been fighting Prostate cancer for over 4 years..now. I call him every weekend on Sunday's. He live's in C.A. with my brother.

Lately, when I call him he tells me his bones ache and they ache more at night. He tells me that it is from the Arydia that he takes for the cancer treatment. I hope that is the case. I am terrified the cancer may have spread to his bones..

He is such a good man, and was so kind and caring of me..I love him so..I can't stand the thought of my dear father suffering. I have to get a good grip and pull myself out of whatever is with me lately..I want to be a good support for him. I want go visit him..

My husband is out of the state on business for the week. He was still ill when he left..tonight, he admitted he is worse, when he called. I asked him to promise to get to a dr. asap if he runs another fever.

I guess, those things alone might make a person cry..let alone all the rest..

Thanks again friends. You mean so much to me!

Thanks Lyn, for your friendship and Thanks, Maia..I will try and keep your suggestion (in mind). lol. I do have times, where I am quite lucid...
Love,
Sandy

 

·
Registered
Joined
·
368 Posts
:hugbetter: Sandy, I'm sorry to hear that you're feeling so badly! You have alot going on! I can relate a little bit about memory problems, but it sounds awful for you! My thoughts and prayers are with you. Hopefully, the Depakote will help! Cathy
 

·
Registered
Joined
·
5,267 Posts
Hi there.

I am sorry that you are feeling down and unwell at the moment. It does seem that you are dealing with a lot and worrying about things.

I hope it comforts you to know, that you are a good writer ! So you didn't lose your social skills with us !

I was thinking about the GPS thing - that is a great idea. I know it is alot of money, but maybe check into that one.

As far as the appointments. I now keep two calandars. One on my kitchen wall on the refrigerator and one upstairs in my bedroom bathroom. Both are where I always go. So I am always looking at the day and cross them off every night.

The pills - a weekly pill box. On the bathroom counter in my room, only way I see them and if I didn't take them.

You can keep an online calandar as well, although I find that too much work and if you are not online every day, you will miss out.

If you move, will you be far? I am sure that your children will bring the grandchildren by for visits. It is something how the little ones brighten up our days.

There are times when my words are messed up. My hubby always catches it. He is kind of use to it now. However, when I do this to others, they either laugh or correct me and I laugh along and brush it off. It used to bother me but now I just laugh and ignore it.

If your friends are on line and use their computer, maybe you should try to keep your socializing through the computer - as in what you want to say, etc. and I usually keep in touch with alot of people that way. I know it is better to get out and use the phone, but sometimes it is just good to do on computer.

But most of all, you have friends here where you can let it all out and feel better.

So I am sending you hugs and hope that you feel somewhat better and uplifted too. Here check this dance out !
 

·
Registered
Joined
·
1,388 Posts
Sandy,:there:
I agree with the others that your post was lucid.
You are going through so much and anyone would be overwhelmed.
You are doing the right stuff by being upfront with your drs and taking your meds. Once things settle down-I am sure you will be much better.


Hugs,
Becca
 

·
Registered
Joined
·
1,110 Posts
I am so sorry Sandy

I really identified with some fo your feelings. Especially about reaching out and not seeming to connect ... feeling you are irritating others, etc.

It's such a lonely place when you experience these types of emotions ... what ever the cause.

I think you have an awful lot on your plate right now, and perfectly good reasons to wobble a bit. All your fears and concerns make perfect sense. Stress is a demon for skewing the way we come across to others. It is very upsetting if something we find really important and worthy of concern seems unimportant to others.

I have had great internal struggles during house moves - like going through the grief cycle.

Have you lived in your house for many years? It is the most natural thing in the world to be distressed about moving away from loved ones and upsetting your normal routine.

I'm afraid I don't know what Valporic acid is, so have no helpful words about it, but I really wanted you to l you to know I am thinking about you. I am sorry I have no words of wisdom to share.

Take care, and please try to take time out to relax every day. Don't bother about what seems to need to be done. Still find a little me time - even if it is to have a cat nap becasue all that worrying is very tiring for our brain, a good rest and relaxation is the most healing thing out there.

Struggling to read this back cos sleepless with migraine at the moment. Hope it make ssense.

With love
 

·
Registered
Joined
·
24 Posts
Hugs to you!

My heart goes out to you as I truly can relate to your posting. I also understand it very well. If those around you don't understand, it could be they are not listening. I hate to give advice because what works for one person isn't always good for someone else. Try tackling one problem at a time, don't focus on all of them at once or it will be overwhelming.

I am my own worst enemy when it comes to giving it up and stop pushing myself to go on. I had to remove myself from work, because I was at the breaking point and felt I was about to go over the edge. I've done very little since but sleep. (much needed). Fatigue does a real number on our ability to function energy wise, as well as mentally.

I am saddened to hear about your father as well. Having someone that ill, that is so close to your heart can also take it's toll on your own well being. Been there done that. You have many friends here, and a good support team available to understand what you are going through.

You are never alone, even though sometimes it may seem that way.

CW
 
1 - 9 of 9 Posts
Top