What is Pulmonary Fibrosis
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothe...
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Living alone with PF
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I get frustrated at times trying to cope with PF, alone. No matter how you feel, you need to find a way to continue on with the day, because no one is going to help. Some days I need to sit down every 10 or 15 steps, because I run out of energy. Other days are better.
Getting ready to go out is a real challenge. By the time I get dressed, gather my things, go down to the garage, check my oxygen container, make sure my walker is in in the car, open the garage door, drive out and close the garage door, I feel like I've already been somewhere and anxious to get home and rest!! On the other hand, I wonder if it takes a greater inner strength to carry on alone. Your thoughts? Posted on 04/15/09, 02:04 pm |
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It does take an inner strength to cope with PF on your own. I don't know you manage being on your own and dealing with this. I am a 24/7 caregiver for my husband and he certainly couldn't cope by himself. Do you have anybody in to help you from Hospice or a Health visitor? I get exhausted just looking after my husband let alone coping with PF.
Hugs 
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Just hearing your story lets me know that I am not alone, someone is feeling the same way I feel when I'm trying to go out. I am so out of breath at times that I rather stay at home (all the time) and just sit still. I am sorry to hear that you are by yourself. I have my sons, 22yrs and 18yrs old, to help me with everything, but personal needs (bathing, and dressing). I hope things can get better for us and maybe we can find a way to come off the oxygen and do for ourselves. I was told by the doctors, that if I lose some weight that was put on from the prednisone that I might be able to come off the oxygen. I am hoping and praying!
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My dear, I am so sad reading your post :( as Rhea says, I too dont know how you manage alone.....Mike needs so much help and even with my help is exhusted.
I so understand about your attempts to get out...Mike loves to go to the library, but often by the time we get there he would rather turn round and come home again to rest :( HUGS
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Thank you for the hug and concern. But I am not alone. I have my sons that does a lot for me. I don't know what I would do without them. I think about them leaving soon to start their lives. I'm praying that I get better by that time. I hope everything goes well for you and your husband. We all can only take one day a time and don't worry about tomorrow. So I thank God for today.
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I don't have a caregiver. I have someone that takes care of the outside of the house,and she is always willing to shop for me. Aside from this, I do it all alone. It may take me longer, but eventually I get the job done! With the help of my parrot. . . she keeps me in good spirits. . . I'll do what has to be done. So who said life was easy!!
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Life with our illness especially when you are on your own is almost impossible not even to mention lonely.
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When you are alone and have illnesses it can be very lonely. I too have IPF I also have Neuropathy and fall regularly, it is difficult. My sister does come 2-3 times a week for a couple of hours a day. My brother also tries to come a couple of times a month for a couple of days. I miss my brother as he hasn't been here for a month. The daily chores can back up when I'm not feeling well so, I just let things go. I only do things that are necessary.
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I do not know how a person can deal with the illness alone. So far I have been doing well but I still would not like to have to do everything by myself. You have my respect........
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I also have pf and have been taking prednisone.
My fatigue is not as acute as yours. I have found a food supplement that has given me some hope and, more importantly, some energy. It is call Neprinol AFD. I've been taking it for two months and have begun feeling some new energy. It took several weeks to notice the effects. I wish you continued strength to continue with life's unexpected and unhealthy surprises.
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Are you sure that you are not ME? Your message is ringing so true and at times I feel the same way. I actually started a rehab program to try to hold onto what energy I still have and possibly increase it. They teach breathing more efficiently, upper and lower body endurance and strenghtening. Sure hop it is as good as the ads. The alone part of all this is the most frightening as I don't want to lose my independence.
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