Hi Daniella
 

I was 32 when my PN came on. I was also one of the youngest ones on the board and had a young child. My family lives very far away too. It was horrible. You are right people don't understand. But before my PN, I was at times completely but (temporarily)disabled from a chronic back condition. So my family was very use to me being lethargic & in pain.


It's been over 3 years now Daniella, and if I learned anything I learned that nerves take years to heal. The first 2 years were the hardest. I would have long periods of anxiety,dysautonomia & PN. I have had alot of recovery too. Although I have never been officially diagnosed using testing for proof, I do have a clinical diagnosis and through a process of 85% elimination they have ruled most things out. I do fit the clinical diagnosis now. Hang in there Daniella, and don't isolate yourself.

Also regarding the dry eyes... do you take beta blockers?

Hi thanks. To be honest I don't know what I need or want. I have like split personalities. Not really but even I asked my psych tell me how I should feel facing this every day and then more issues happen. He couldn't tell me. As for my mom there is nothing I guess she can do for me. I have lived on my own for 12 years and never asked to stay even for a night but now I feel I need support if I am going to go through the scs and want to stay for like 6 months but she said no. Only for the recovery part. It is not normal for some almost 30 to stay with her mom cause I am able to do like errands etc. I don't know makes me sad. As for my eyes they just never get better and was worse then when it started. I am on 3 meds now and I have no relief. What is that you are talking about cause I am not on it or heard of it. Thanks and sorry for your struggles

moving home
 

Daniella, I know we live in a culture that prides itself on independence, and where children are supposed to leave home. But that's all a myth of our society, and a recent one.

There is nothing like other people for comfort, and no one as good as a good mother. If you and your mother get along well, I'd want to ask you: why doesn't she want you to continue living with her? Maybe she misunderstands your situation. Or maybe she's bought into this idea of independence for all.

It's not a failure to feel lonely on your own; it's normal. And it's hard to have a social life when you are not well and in pain. I'm divorced, and I try to date, but there's no way I can date when I'm feeling awful. That's when I just want some comfort from familiar people. I'm lucky that my kids are home from college for the summer, because I'm having a pretty bad streak. But I can tell you, if I didn't have kids, and my mother was a comforting person and not a frail 90 and needing care, (I'm in my 50s) I'd move in with her in a heartbeat. If she'd have me. So I think your desire to be with her is normal, healthy, and a sign that she is able to comfort you.

Do you think you can make her understand that this is very helpful to your overall stress level, which in turn affects your pain and functioning. maybe you'll be more able to help in the house than you were--cooking and picking up?

Can you try negotiating something with her?

Gina:

I know by the time you read this, you will be back from your appointment at the Cleveland Clinic. I hope and pray that they are able to give you relief. You have suffered with no relief for so long.

I think that most people probably relate to illness as something you recover from-like a person who had an appendectomy last month and now you cannot even tell anything was ever wrong with them or the person who was coughing and hoarse last week, but is fine this week.

When you are suffering from a chronic illness, especially one that has no visible cause, it is tough for people to understand that there is a sick person there, who may be suffering terribly, when they look normal on the outside. Even family members who are close may have difficulty understanding this. Your mom also may be very frustrated that she cannot do anything to help you feel better.

I know that you are very frightened, particularly since no one has yet to figure out what is causing your severe pain and eye problems. If I were in the same spot, I would turn to my mother for comfort too.

I wonder if your psych might be able to talk to her about this and perhaps broker some kind of agreement where you could stay with her at least on a part time basis, just long enough to get you back on your feet. Perhaps an outsider might be able to better explain that you truly are suffering, are very much afraid and are EXTREMELY frustated that so far, no one has been able to help you. The advantage of this would be that this could be presented in a calm manner, with no emotional upset-something that might be might not be posible if either you or your mom get upset discussing this.

Meanwhile, I hope you will be posting the results of your visit at the Cleveland Clinic as soon as possible. I know I will not be the only one here thinking about you while you are gone...

Cathie

Thanks you. You all really help me feel heard and cared for. With all you are going through I feel so bad. Anyhow my apt is actually tomorrow. A lot has happened. Had a little mental break down because I am in such a bad flare up and the stress of going to another pain doc. Then my mom lost it mentally and then I felt bad and scared about that.I don't want to push her over the edge like years ago. Everyone is fine and I stayed at my moms yesterday. A few thoughts I guess. My mom and I have a good relationship but conflict too. I really feel at a loss and I discussed maybe subletting this apt and for the hundreth time moving like 5 min near her instead of 35. Of course after the surgery I will have to stay with her cause no driving for awhile,bending,lifting.She fears I will get to comfortable living with her if I were to stay for a longer period then the recovery and that it is not normal. Then though after the crazziness yesterday she said I could for a longer amount not forever which I never planned but for awhile. Now I feel too bad so I don't know.I have lived on my own since I was 18 so 12 years almost. Even when they thought I would die from my eating disorder I pushed through on my own and worked full time. With chronic pain there is no pushing sometimes. I am the first to say I don't act rational but am trying. My reason is that I have lived in chronic pain of the leg for a year half with lack of pain control and from doc to doc. Then the eyes the same thing for 7 months and makes it hard to see and have gotten worse I feel bad cause I know here there are so many worse off.Anyhow I think I said here how I asked my psych please tell me how I should feel and act. He could not tell me. To be honest in my eyes I am coping not as well as some of you but I have maintained my eating disorder recovery and a healthy weight with no behaviors. I also have not done any other destructive things. Ok enough of the rant. I will let you know tomorrows apt and what procedrue exactly I will have and maybe he will have insight with the eyes too and hopefully my mom and I will discuss the living issues on the way home. 7 hours in the car for a 10 minute apt. I hope it is productive and I have a plan tomorrow. Hugs and thank you

Oh, Daniella...
 

I am sorry you are going through so much!:(

I fully understand what you are saying about feeling safer at your mother's...even if at her home while all alone!:hug:

I am sorry it seems your mother needs a bit more space? (Is that an accurate understanding?)

I do live with my husband and my dog. Yet, if I did not have them and was alone, I could see wanting to live with others.

Is there any chance of you not living alone? Maybe not living with your mother, but living with other friends/acqaintances?

Some areas actually have programs to "pair up" housemates, based upon each person's individual's needs. Do you now if there is a program like that around?

It has been a long time since I have lived near my brothers and sisters. I often wish we all lived in the same neighborhood again! (This may sound sappy, but it is true! It would be easier to spend time together... just whenever the timing was good for each individuals! I'd also definitely want my mother in the same neighborhood with all of us! There's nothing wrong with wanting a healthy relationship with your mother... or with other family members.):hug:

How are things going with your chronic pain group?
Have you been able to make any connections there?

Are you able to pursue any form of a group that identifies with your own spiritual preferences? People often find rewarding relationships within these settings, as well!:D

I am glad you have brought this topic up!:hug:

It is an important one and it is very pertinent with any chronic illness!

Please continue to take care and let us know how this is going for you?

Hi. Thanks. I would say you are accurate about my mom. I know she wants the best for me and feels I may become to dependent on her. The other day I said you talking to my mom ask what can I do when I have a horrible day and am crying through pain and usually I say nothing but now I ask for this and it is a no. I do feel though my mom needs a life and it is not fair for longer then the surgery recovery to stay with her so I am not going to. Tomorrow though were going to talk about me moving closer after the apt. Maybe if I was like 5 min it would make me feel safer and I could pop by. This is a big procedure and I would feel better even after the recovery cause things happen a long the way. I was think of a roomate but when I feel this bad having someone "normal" around could be hard because they would be loud or having friends over. I am trying to get my own support group together and a lady is suppose to call me next week for one she has. The rsd group I was going to go to was canceled cause the girl had some health issues with her scs. Not what I wanted to hear and we have the same doc.
Thanks Dejavu one day at a time. I glad you have your husband and your dog. I know my moms dog is so sweet. It is my ex dog actually but I was young then 20 and not very mature so he came to my parents. A good companion though

Hi Gina:

Maybe after the procedure and given a reasonable amount of recovery time, you might be in a better situation to decide if you even want to move again. It seems to me though you are not on the first floor in your new place. Will stairs present a problem after recovery, or do you know?

Sorry I got the dates mixed up. I was thinking today was the day of your appointment... This happens a lot these days... :)

Good luck,
Cathie

Glad you are here...keep hanging in....
 

and writing!:hug:

This is a wonderful group of people here! We are all so fortunate to have one another to relate to!:grouphug:

I have more to say...but am very short on time today.

I feel your pain :winky: and this will "sort itself out more!"

You are doing the "work" involved in identifying and processing the issues at hand!:hug:

(This will continue to help you as you think about htings and try to plan/make decsions.)

I want you to know that I, too, am thinking of you and wishing you the very best!:hug:

(I will be back as soon as I am able to do so... a small surgery tomorrow.)