Half a life .. some ways to help?

sallylou said:
I've been dealing with a chronic condition, too. I found a rheumatologist who has been able to help me. The side effects of the meds suck but I'm getting around much better. She also prescribed pain meds that have made a hugh difference in my quality of life. Have you found a good rheumatologist?

It's especially hard for people to understand when you look fine on the outside. Chronic inflammation is so debilitating, though. The fatigue is crushing and the chronic pain seriously effects your quality of life. Educate your closest friends and family and tell them what you need.

Have realistic expectations. There will be good and bad days. On bad days, give yourself permission to rest and use self-care. On the good days, try to get out and socialize. Be aware if your mental health and seek mental health care when necessary. I believe that the chronic conditions affect the brain in a physical way, in addition to the stress and psychological issues.

Anyone interested in starting a thread for people with chronic medical conditions? Sort of a support thread? We could share ideas and give each other support.
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I say go for it. There are several of us in AD that have medical conditions that result in chronic pain and limitation. And there is no denying the success of support groups.
 
Yep, probably time to find people who are understanding or have similiar experiences so you wont feel so lonely. AS for your family, I sympathize because they are YOUR family after all. Maybe they are not used to it and will later on?
 
shel90 said:
Yep, probably time to find people who are understanding or have similiar experiences so you wont feel so lonely. AS for your family, I sympathize because they are YOUR family after all. Maybe they are not used to it and will later on?
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Unfortunately, family members have to go through their own adjustment process. When someone in the family is diagnosed with a chronic illness, their role in the family system is changed. That, in turn, creates change for the other family member's role. Sometimes, families really struggle with the changing role.
 
Danb said:
I have chronic idiopathic autoimmune disease. Basically it is chronic inflammation everywhere. Different parts swell up and get painful, like my skin, knees, shoulders, spine, inner ear.

I have had this for the past 10 years and have had to work part time from home. The past few months it has been worse.

So i'm embarrassed because i can't work full-time and have to rely on government benefits for support. I'm only 36. If i was in retirement age it would be considered normal. When i tell people about it they get this look of shock and the conversation usually ends.
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Ok, I feel like Im going to get yelled at in some way for this, but:
You shouldn't be embarrassed. Why are you concerned with "normal' and what other people think? All that matters is how you feel. Its an illness and you have to take the necessary measures to make sure you stay as healthy as possible. If people end the convo because of those details then they are not worth talking to.
If its your family, then they maybe having a hard time dealing with it to, and communication is key.
Try a support group, or a counselor.
 
jillio said:
Unfortunately, family members have to go through their own adjustment process. When someone in the family is diagnosed with a chronic illness, their role in the family system is changed. That, in turn, creates change for the other family member's role. Sometimes, families really struggle with the changing role.
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Like with what I am going through. My mother, hubby and MIL don't seem to understand that I no longer have the leg strength I used to and they don't seem to understand why I can't do the things I used to be able to do. I am in daily battles and tend to shut myself into my room and not associate with them much. I fight doing that, but sometimes I am left with no option. Add to that the fact that I now no longer have any hearing at all and that's yet another adjustment
 
Danb, I'm sorry about your physical struggles, and how they impact your daily life. It's not easy to have a chronic health condition. I've had chronic hives for over three years this last time (I've had other bouts with the hives over the past decades). This was the longest and worse. I took Prednisone most of those three years. I recently weaned myself off of it, and the hives are in remission. They could come back with a wallop, or they might not. It's happened before, so I don't know what to expect.

I hope you can get to know some local people who are more understanding of your situation. I don't know the ages of your niece and nephew but I hope that they can get used to your appearance. Kids usually are pretty good at adapting to those kinds of things.

As you can see, fellow ADers are supportive and can offer good suggestions. Please stay with us. :)
 
I'm hoping for the best for you. You shouldn't feel guilty for resting when you need to, and using what support you need from the government. If you were being lazy, if you were just using the government so you wouldn't have to work, then I'd say you should feel guilty. As it is, you do what you need to take care of yourself. See if there's some sort of physical therapy or massage that can help. Maybe try holistic medicine? Also, just as you have to get used to the "new normal", being the new severity of your symptoms, so does your family. I think if you're up front about what's going on and your needs, it might help (but then, I don't know your family dynamic). Just keep on hangin' on, and I'll keep you in my prayers.
 
I understand I am support to you I might to dificult to adjust to better improve health! Hope be hear your better improve strength! sorry hear your hard physician!
 
One thing I could suggest is that when the pain gets to where you are unable to work, make sure you have a hobby of some kind. That's why I still play keyboard, knit, paint, draw and such.
 
KristinaB said:
One thing I could suggest is that when the pain gets to where you are unable to work, make sure you have a hobby of some kind. That's why I still play keyboard, knit, paint, draw and such.
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Good idea advise you point help calm peace yoga increase draw and knit! :)
 
Reba said:
Danb, I'm sorry about your physical struggles, and how they impact your daily life. It's not easy to have a chronic health condition. I've had chronic hives for over three years this last time (I've had other bouts with the hives over the past decades). This was the longest and worse. I took Prednisone most of those three years. I recently weaned myself off of it, and the hives are in remission. They could come back with a wallop, or they might not. It's happened before, so I don't know what to expect.
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I have chronic hives too. I've had it for 11 years. Its part of the inflammation problem. Its the major factor keeping me disabled right now.

Its really difficult for me to start back up. These flare ups have happened every 4-6 years. Each time i become disabled for a few years. I haven't worked full-time in 4 years.

How do you bounce back?

Also i'm single and afraid to date because of my health problems. How do i get over that?
 
Danb said:
I have chronic hives too. I've had it for 11 years. Its part of the inflammation problem. Its the major factor keeping me disabled right now.

Its really difficult for me to start back up. These flare ups have happened every 4-6 years. Each time i become disabled for a few years. I haven't worked full-time in 4 years.

How do you bounce back?
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I don't really bounce back; I just keep plugging on. Sometimes it's very hard when they are so bad that I don't sleep for three days/nights, and my body screams from pain. I just continue doing as much as possible the things that are important, and let unimportant things slide.

Also i'm single and afraid to date because of my health problems. How do i get over that?
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It will depend on whom you date. If the person you date is shallow, then good riddance. If the person that you date is a worthy person, then you can work things out.
 
Reba said:
I don't really bounce back; I just keep plugging on. Sometimes it's very hard when they are so bad that I don't sleep for three days/nights, and my body screams from pain. I just continue doing as much as possible the things that are important, and let unimportant things slide.


It will depend on whom you date. If the person you date is shallow, then good riddance. If the person that you date is a worthy person, then you can work things out.
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Wow yeah that happens to me too, sleepless nights. I found a good medicine to help sleep recently. Seems to make a difference in my hives too, when i can sleep well. Helps the fatigue too. Since i've been on it i've been getting more done during the day and have been able to reduce my prednisone some. Its only been a week, hoping it lasts.

Do you think its a good idea to be upfront about the health problems, or after you get to know a person?
 
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