Don't Know What To Do?

[friday]

I almost feel like i'm asking a question know on will know how to answer but,

I am doing okay..but I am not well.

I havn' t really been on any meds lately. I've just been taking lot s and lots of salt. I am doing okay,.my Bp has gone up . used to be very low now , but now around 110 average. I don't faint or haven't had really really bad eps lately, no hospitals stays or anything.

But I would like to feel better. To do what the "normals' do. At last a little but, I still can't walk very far, and have to use a chair sometimes, and I can't really go too far from my home.

I can't do any kind of job or even volunteer job. It's a victory to be able to go out to the movies once in a while, Some days I'm able to do a little around the house and play frisbee with my dog outside but I just feel if I could be a little stronger if I could have a little more strength and could do a little more I would be happy.

I just spend too much time alone like this. the things is I'm mostly on my own. I do not have a husband or kids, the only friend I have is too far away to drive to most days, and he can' t drive here cause he doesn' t have a car. I live with two elderly parents. One of whom is sick and the other is busy taking care of him. So, my world is pretty small without being able to get out.

And to get out I need to be able to drive and to feel well enough to either walk a while or wheel my own chair.

I want to be able to join a class or something. but I can't afford to spend to money and then not be able to show up half the time. I have thought of staring a group of my own in the clubhouse we have here. Maybe teach people to paint. But again you can' t start a class if you don't know when you'll make it there and when you'll be sick.

Has anyone found anything particularly helpful that you felt gave you strength and stamina ..like I said my bp is already pretty good. So I don't know if meds like Florinef and things to raise the bp will do any good for me...But I want to feel better. any ideas?? Not just meds but anything that helps.

Susan

[taylortotmom]

Well, I don't think your question is that difficult really. Many (if not most) of us can identify with the solitude of chronic illness. I know, for me personally, the internet has literally been a lifeline. Organizations such as DINET provide support for us- thankfully. Many of us who are unable to work have found other ways to be productive. Just by providing support to others with this illness- you are accomplishing something worthwhile.

As far as getting out and doing things- my personal mantra is "don't let what you can't do keep you from doing what you can do". I am unable to be the Master level Counselor I went to college to be but I AM a wife, mom, Girl Scout leader, Bible study leader, and professional songwriter. However, there are times, I am little more than a professional patient. And that's okay.

Give yourself permission to TRY. You may not be able to commit to anything on a regular basis- and that too, is okay. There are plenty of ways to be involved in society as you can and when you can. Also, be prepared for the worst case scenario. Always have a cell phone. gatorade (if this is part of your protocol) and health info cards with you. By being PREPARED you have control- instead of the fear of "what if" controlling you. If you have artistic talent and feel up to it- teach a class or two. Explain to your students about your situation and I bet you will find them to be understanding. You might even enlighten a few more folks about dysautonomia- and this is always a good thing.

Carmen

[AJVDK]

I am not sure how to answer the question, but I wanted to let you know I was thinking of you! Hope thing will get better for you!

[friday]

I am not sure how to answer the question, but I wanted to let you know I was thinking of you! Hope thing will get better for you!

aw, thanks, that helps too.;o)

Susan

[dsdmom]

Susan,

If you are starting to feel well enough to do some small things, I think it is important to try and develop more strength and stamina. Easier said than done, but have you thought about physical therapy? I went through 3 months of it and it made a huge difference (until I had another setback) but now i know that I can get there again. Of course now I'm just trying to get back on my feet and the mere idea of going to therapy is exhausting! But I know I have to start doing it again otherwise I will lose more strength, etc.. Your physical therapist will be able to work with you to make sure you don't over do it - that you push just enough.

Could you talk to your doctor about prescribing you some? Or, could you join a gym that has free use of personal trainers? They may be able to help too but I would start with a physical therapist if you could.

Just a thought - I am happy that you are doing better!!!

[friday]

Well, I don't think your question is that difficult really. Many (if not most) of us can identify with the solitude of chronic illness. I know, for me personally, the internet has literally been a lifeline. Organizations such as DINET provide support for us- thankfully. Many of us who are unable to work have found other ways to be productive. Just by providing support to others with this illness- you are accomplishing something worthwhile.

As far as getting out and doing things- my personal mantra is "don't let what you can't do keep you from doing what you can do". I am unable to be the Master level Counselor I went to college to be but I AM a wife, mom, Girl Scout leader, Bible study leader, and professional songwriter. However, there are times, I am little more than a professional patient. And that's okay.

Give yourself permission to TRY. You may not be able to commit to anything on a regular basis- and that too, is okay. There are plenty of ways to be involved in society as you can and when you can. Also, be prepared for the worst case scenario. Always have a cell phone. gatorade (if this is part of your protocol) and health info cards with you. By being PREPARED you have control- instead of the fear of "what if" controlling you. If you have artistic talent and feel up to it- teach a class or two. Explain to your students about your situation and I bet you will find them to be understanding. You might even enlighten a few more folks about dysautonomia- and this is always a good thing.

Carmen

Y'know that's part of it right there. I feel like the 'what if" is controlling me. I have lot of good times but I'm afraid of the bad ones. Permission to try is a good point. I have a hard time when it comes to making plans with people because they get disappointed and then I feel guilty. I suppose that's something I have to learn not to do to myself

I do have the fear controlling me. it' s hard I've felt like I lost control a while ago.

I suppose there were times when I was feeling sick or faint and told people and they didn't respond well. One place was in a depression group ( which didn't really fit me but that's besides the point) and I felt so sick and wanted to lay down and they wouldn't' let me use a couch because it was not permitted to lay on the couches. So I had to wait for them to clear the room for me. I was so upset by this, I didn't go back... it was horrible sitting in that chair while feeling so sick and scared Especially when I knew if I laid down it would ease the symptoms right away. And worst of all I felt no one understood or maybe didn't even believe me.

I think now I would just say **** with it and say "I have to lay down and just lay on the couch" and just do it.

I guess that's part of taking control. I'm sick and I deserve the help I need.

I suppose years of doctors telling me it' s in your head or it' s not that bad and they had no clue what was wrong with me. I've had so many doctors, and just people dismiss my symptoms, and literally say ..well you just have to push yourself harder. Good idea then I'll actually pass out. maybe then you'll believe me.LOL I guess I'm afraid most o f the time that I won't find any support if I wind up sick out there. So, this is something I have to work on.

I was wondering myself if I might tell people I was teaching that I have this illness and I may not be able to show up every time. I am actually just thinking of doing this for free so it s not like they are paying costumers. To tell you the truth that would make me feel best. To have people know I am sick and accept me the way I am. Not expect me to do what they can.

I guess I have a hard time owning my illness. sometime I don't want people to think I'm a whiner or hypochondriac. And i try to be as little trouble as possible. Hurting myself in the process.

Thanks you for your help. I think I have some work to do on this but I like how you wrote about taking control. I would like to feel that way.

thanks again.=o)

Susan

[friday]

Susan,

If you are starting to feel well enough to do some small things, I think it is important to try and develop more strength and stamina. Easier said than done, but have you thought about physical therapy? I went through 3 months of it and it made a huge difference (until I had another setback) but now i know that I can get there again. Of course now I'm just trying to get back on my feet and the mere idea of going to therapy is exhausting! But I know I have to start doing it again otherwise I will lose more strength, etc.. Your physical therapist will be able to work with you to make sure you don't over do it - that you push just enough.

Could you talk to your doctor about prescribing you some? Or, could you join a gym that has free use of personal trainers? They may be able to help too but I would start with a physical therapist if you could.

Just a thought - I am happy that you are doing better!!!

Well, the thing is I'm on Medicaid. so the physical therapy they pay for isn't very helpful. I mean I went for fibromyalgia and it was basically once a week she would show me how to lift a box and stuff like that. It was 5 weeks of that. LOL I dno't know though it was a few years back. I was still working then..it might be worth trying again.

But I think I can try to do a little walking here and there. I was thinking instead of trying to walk in one direction I could walk one way for a few minutes then come back to the house and then if I feel good walk in another direction.. And just make sure I don't overdo it. I have a problem with that. I try to do too much when I feel good and then I feel bad..

thanks,

Susan

[bella27]

Hi Susan,

Have you tried meetup.com. They have clubs for almost everything for almost every city and its free! So theres no pressure to attend every week if you don't feel up to it. Just thought I'd throw that out there.

Best,

Rachel