how to stay positive

[Susycakes]

Hi all,
I love disney..I have a double lung transplant. Overall, i feel I have had really good luck with my health the last 10 years..but I guess I hit a bump on the road and I'm suffering with pneumonitis. I'm on a ton of prednisone and I'm sad all the time. We are planning a trip to WDW for august but I am so depressed even that isn't helping. I'm so tired...I can't even think about disney world. I had to take a medical leave from work too, I've never done that. I'm just so depressed I don't know how to cheer myself up and it makes me feel awful bc I know I'm so blessed



Susy

 

[disfan07]

Hi all,
I love disney..I have a double lung transplant. Overall, i feel I have had really good luck with my health the last 10 years..but I guess I hit a bump on the road and I'm suffering with pneumonitis. I'm on a ton of prednisone and I'm sad all the time. We are planning a trip to WDW for august but I am so depressed even that isn't helping. I'm so tired...I can't even think about disney world. I had to take a medical leave from work too, I've never done that. I'm just so depressed I don't know how to cheer myself up and it makes me feel awful bc I know I'm so blessed



Susy

Honestly..for me....therapy. A lot of it. I've been in therapy for 2 years and I'm still going twice a month (3 hours a month).

It's the only thing that helped me at all. I'm still not happy and positive all the time but I'm getting better. But my therapy does get setback by medical setbacks.

I have serve asthma, a cardiac condition, endometriosis, PCOS, neuropathy, GI motility problems, idiopathic anaphylaxis, possible bone marrow/hematology problem and undergoing neuromuscular evaluation. I also had a craniotomy 2 1/2 years ago.

It's hard to stay positive. I'm not going to lie....I do have days where I sulk and days of self pity. It's normal and expected. As my therapist said, anyone who is 100% positive ALL the time in these situations is the one who is unusual.

I had to take last quarter off from school because of my medical situation and honestly I was headed towards rock bottom because for me, school was the one thing I could control. What helped me through was my family, my few very very close friends and my therapist. But my therapist was essential.i don't know if I would have made it without her.

I truly believe that anyone with chronic medical conditions should have therapy as part of their treatment because as much as the physical part is important, the mental health part is even more important IMO.

Good luck. I hope you find a way to feel better!

 

[Susycakes]

sometimes i've thought about therapy but i wonder what i'd talk about. i know i've been sooo lucky. sometimes its hard to even accept that i'm 'not normal'...and even my husband forgets that i do get tired and i do have limited physical capabilities. I feel like people around me think I'm a whiner, because you can't 'see' what's wrong. That's something I've dealt with for 15 years though.

It sounds like you have a lot on your plate too. I've been doing daily home PFTs and today was slightly better but the prednisone is kicking my butt. I can't wait to have more energy. I'm going to try to muster up some energy tomorrow and do some grocery shopping

 

[jmartinez1895]

I am sorry that you are not feeling well. Have you talked to your doctor about how you are feeling? Sometimes it could be something as simple as changing your meds and other times as PP said you may need to consider seeing someone who can help. You don't have to worry about what you would talk to them about, just tell them how you feel and they are trained in coaching you to feel better and to give you the tools you need to help yourself. Have you ordered the free planning DVD and maps from Disney? I was having a hard time getting excited for our upcoming trip, but once I started to get " Mickey Mail" it made me feel more excited.

 

[disfan07]

sometimes i've thought about therapy but i wonder what i'd talk about. i know i've been sooo lucky. sometimes its hard to even accept that i'm 'not normal'...and even my husband forgets that i do get tired and i do have limited physical capabilities. I feel like people around me think I'm a whiner, because you can't 'see' what's wrong. That's something I've dealt with for 15 years though.

It sounds like you have a lot on your plate too. I've been doing daily home PFTs and today was slightly better but the prednisone is kicking my butt. I can't wait to have more energy. I'm going to try to muster up some energy tomorrow and do some grocery shopping

I thought the same thing when I first started seeing my therapist. For me, what triggered me to go see someone was when I missed 2 weeks of school because I was hospitalized with pneumonia my second quarter at school. I had a craniotomy 8 months earlier and a laparoscopy 6 weeks earlier. I thought I could handle anything. But missing those two weeks of school only 15 weeks into my first year away at school hit me hard. I knew I needed help but I had no idea if it would help or what I was going to talk about. Especially since I always tried to avoid talking about everything.

The first couple of months were tough. At times I thought about not going back. But I'm glad I stuck it out and that I'm still going. My therapist is absolutely wonderful. I got lucky and the first therapy referral I got was a good match. Some people have to go to a few before finding a good match. Which is the most important thing.

Now I will fully admit that I have a history of depression and anxiety. I was suicidal in high school. So adding that with my chronic medical conditions creates the perfect storm of mental health issues for me. But without my therapist, I would not be able to deal with any of this.

My most recent PFTs are actually what sent me into my most recent spiral downwards. My numbers were not good. Increased airway resistance, very low MVV, low FEF 25-75%. The rest on my numbers are all over the place. Those little things can cause more psychological problems than we realize. I thought I could handle my "new normal" but it hit me harder than I realized. I only realized what it was doing to me when my therapist pointed it out.

 

[bedogged]

Hi all,
I love disney..I have a double lung transplant. Overall, i feel I have had really good luck with my health the last 10 years..but I guess I hit a bump on the road and I'm suffering with pneumonitis. I'm on a ton of prednisone and I'm sad all the time. We are planning a trip to WDW for august but I am so depressed even that isn't helping. I'm so tired...I can't even think about disney world. I had to take a medical leave from work too, I've never done that. I'm just so depressed I don't know how to cheer myself up and it makes me feel awful bc I know I'm so blessed



Susy

It sounds to me like it is perfectly natural for you to feel depressed with everything on your plate. You do know that depression can be a side effect of the large doses of prednisone that you are taking? I think you should call your doctor and tell him what you have told us. It could be that a antidepressant might be of great help to you? Just remember that you have friends here that are more than willing to listen.

 

[Cassandy]

I find sometimes it can be so easy to get caught up in how blessed we are, that we forget to acknowledge that our lives are actually pretty darn hard.

I know in our house we get so used to "our normal" that we don't realize how bad things are until it's kicking our bottom side and my husband and I are upset and exhausted and can't cope, and then suddenly the realization hits that, "oh, dang, this isn't normal, and it's normal to be overwhelmed and upset."

I think you have a ton on your plate, and though you might be feeling lucky, you are also going through a lot and none of it is easy. It's actually really hard.

I see a therapist too, every now and then, just to talk it all out because it is hard. I hope you feel better soon.

 

[SueM in MN]

It sounds to me like it is perfectly natural for you to feel depressed with everything on your plate. You do know that depression can be a side effect of the large doses of prednisone that you are taking? I think you should call your doctor and tell him what you have told us. It could be that a antidepressant might be of great help to you? Just remember that you have friends here that are more than willing to listen.

I agree with all the previous posers - there is a lot of good advice and support there
I quoted this post specifically because I was going to post about steroids and depression and this poster beat me to it.
Many people feel hopeless or guilty because they are depressed, but its important to realize that people often need help 'getting out of the hole' of depression. Depression certainly is not something anyone chooses.
But depression is common, especially for people who are dealing with chronic conditions. And, some medications, like steroids can have depression as a side effect or people can become depressed about the other effects of steroids on their body.

I agree with the other posters that talking to the doctor would probably be very helpful.

 

[a1tinkfans]

I just wanted to send some to all of you dealing with illness or sadness, or depression or anything that is making you down. There are some great listeners here on the DIS. Hang in there.....these downs will make the UPS around the corner, that much better....

 

[Susycakes]

Thanks everyone! It's been a long week at home..fielding questions from short term disability insurance who I guess doesn't want to pay.... .? I have no idea..the lady on phone made me feel bad Iike I've always been sick so why am I on leave now? (Not true. ive been well until now) Either way I am in no condition to be working until my prednisone dose is more reasonable...I started 40mg today.

I did order the Disney DVD lol..still not here yet! And my wonderful husband got me an iPad which I am loving!! He downloaded the Disneyland app which is like a tour of it and it really was so cute!!! Really cheered me up! So glad I got to go there two yrs ago!

Hope everyone is doing well on this lovely Friday. I did start taking some Ativan to help w the anxiety..those of you with chronic breathing issues can understand. It got really bad where I was having palpitations and chest pain..not good. I'm calmer today thankfully!!!

 

[SwimBikeRun]

I am glad you are feeling better today - you sound better!

Talk to your doctor about supplementing your vitamin D in the winter. I live way farther north than you but it's still possible that your vitamin D is low. It is an epidemic in this country and I do believe it's responsible (even partially) for a host of medical problems like depression, anxiety. I feel so much better when I remember to take my D.

Anyway, just wanted to give you some support! Hang in there. It does get better!