Hello. Been on prednisone for seven years. Lowest at 14 mg and highest at 80 mg. have a rare disease called polymyositis with interstitial lung disease. This disease does not stop flaring up so am tapering slowly and then back to 20 or 40mg and we start all over again. Have handled it well and follow directions carefully. I eat controlled portions even when I don't want to eat. Sudden stress in our family has me over the top emotionally. Feel like I am going crazy. Until now I handled this well. On oxygen, at home almost constantly, can't drive, husband works a lot.
Have become quite an expert on my disease and prednisone. ( and am on a bunch of other drugs as well). Loneliness is the hard part. No relatives around. Friends are so busy. What do you suggest to get through being at home? Have run out of ideas after all this time. Thanks
Added 17 Feb 2012:
Because this is a degenerative muscle disease - a lot like ALS only not nerve driven - most of my time is minimal physical activity. Lungs are seriously shot and now they talk about early signs of congestive heart failure. No cures. Just hanging in there. I have a hobby though doing collage work. Most days too tired. People to interact with would help.
I appreciate hearing from you.
Added 1 Nov 2012:
Now doing well. Doctor addressed the stress. Things are so much easier once the side effects from the prednisone were under control.
Read, crosswords, maybe take up painting or drawing, it can give great pleasure and helps sooth your emotions too. Pick lavender and place it around the house it helps calm you. Research aroma therapy and try some oils rubbed on you or burn. Try and keep yourself busy with tasks and lists ie; pick one room and try to beautify it, dust, tidy, decor, decoration, etc. When that's finished start on another room. It only takes one idea and then it can flow on from there, research takes some time, join online networks such as this and chat to others wastes a lot of time! Good luck with it. At least you can learn to live with the levels needed by your body and accept that and try to live the best you can within those restraints. iT'S NOT EASY AND NOONE ELSE WILL UNDERSTAND YOUR SUFFERING... so don't try and tell them all the time about it as they will get bored of listening. Try to find happiness:)
17 Feb 2012
Join online support groups - they don't have to be for your specific condition - go to one's for chronic health conditions. Stick around long enough to really get to know people. That's been a great help to me - my friends are "in my computer". This site is very good - start answering questions. You'll get to know the other regulars (they are a friendly bunch) and start sending "private questions" to folks and build up friendships. I know it's not the same as physical people - but online friends really can help - because they know how hard it is to live with chronic health problems. Take care! ElizaJane23
17 Feb 2012
I don't know exactly what you are going through, but I can tell you that I was so anxious from being on Prednisone that I finally gave in and was hospitalized to deal with my anxiety. It was the best week I've spent in over 3 months. I was also started on Inderal for the anxiety and it has helped take it down a notch. I found people who were in the same boat I was... just trying to make it through the day. And you are right friends don't like to hear about all the problems. I am starting to see a light at the end of the tunnel and on line sites like this on has been very helpful. I also have found that I can try and help others that are having difficulties such as mine. Just reaching out and talking, texting and responding to others has helped. I live alone and have had plenty of time to think about what is occurring to me and have discovered that I must not dwell on my problems but rather I need to dwell on what I can do, and what can make me happy. We all have something to give each other.
19 Feb 2012
Im so sorry to hear that you been poorly. Being on steroids on top of that can have a long knock on effect. I am a person who likes to stay active and do things on my own,and when i have a severe flare of Ulcerative Colitis, i become restricted and absolute hate,loathe not be able to do things for myself. I cant walk properly when in a bad flare, and rely on my family and they know how agitated i become. Everyone here on this site have some wonderful idea's what you can do at home. Being on line,re-searching,aromatheraphy (excel idea,i use many variety's to help me relax by oil burners) and also hobbies.
I understand you are currently on oxygen,are your able to move about,meaning potter about the house? Reason i ask this is try to look into doing something for yourself. I had a look into candle making, soaps and bath bombs... i think this is a excel idea. Even more so when you find you become a bit of expert at it and turn it into a part time business. Might help take your mind of it and in the long run help reduce the stress related to your illness. If this is impossible,because of your condition then try to dabble your hand at something else. But it has to be something you enjoy. How about mixing a few oils to create a perfect linen and room sprays? your hubby can sell them at work,i mean they are expensive to buy and much cheaper to make at home and sell. You have the world at your finger tips for "the know how" to make them. If none of the above is appealing to you, then how about hand sewing. Ive always liked the idea of doing something for myself that i enjoy and others can enjoy too. (oils, bath bombs). Secondly, i know steroids are awful when you can't sleep and relax. You need to help yourself get your illness off your mind slowly to help you get better... to do that you need to invest some time into doing something for yourself that you enjoy. You will get better chick, just believe in yourself. Good luck and wishing you a speedy recovery.
Thanks for the encouraging words. Sadly, because I am permanently on oxygen I am unable to be around any scents or even dust. In the summer I used to garden all the time. And hike and train our dogs for agility. Very active. Now walking through our home even with the oxygen tires me. Used to do lots of crochet and sewing. Hands shake terribly. Can't be outside much because cant be bit by bugs as they can cause infections. Tons of "I can not do" making life the opposite of what it was.
Life is now like being a lump watching tv. Days of blurry vision kept me from reading until I got a kindle. Was just surprised with an iPad. Type is big on these and I can read again. Holding a book and not able to turn the page is no longer an issue! Reading email and chatting is now possible without the fatigue of a desk chair and waiting for a good day.
But, no, I am not getting better body wise and that is the source of my problems. Attitude just isn't switching. Taking alprazolam and started an antidepressant. Seeing a psychologist who specializes in people who have medical problems tomorrow. First visit. I shall see how it goes.
It is not that I fear dying. It is that there is so much more left to do with my family. I don't want them left with unfinished business.
Thanks for listening. Your ideas are well received. Wish I could do them.
1 Nov 2012
Thinking of you and wondering if you could color? My arms and wrists fail me often however I found some great books that look like stained glass and marker flows over the pages quite easily. Then you can hang them in the window... pretty little suckers. When I'm home I too get lonley and my friends don't understand try as they may so I immerse myself in a book ( until tis too hard to hold up and I have to get creative on hpoe to prop it up. I let some of the characters in My books become my firends. I know sounds nuts bit it helps me. Let me know if you like any book ideas... I recently read "Little Heathens" a book about growing up on an Iowa farm during the depression. I loved the simple peaceful getting back to nature book. If your not too cold you could wrap in a blanket and sit outside and count how many birds you hear. This morning I was particularly cranky and I saw 3 red tail hawks overhead... unusual here to have them grouped.
Then a moment later a fourthad this evening a fith. I still had a reallyhrd day with wild emotions some crying and irritability, but I was able to go back to those beautiful birds... I have five children... quess they all wanted to say hi mom we love you. Take care of yourself Jenny
13 Mar 2013
Hi, I understand how you feel as I am also recently diagnosed with Dermatomyositis. I have muscle aching, tiredness, loss of strength and skin itchiness and bruises. I am also taking prednisone to suppress my symptoms and waiting for my cancer tests appts. If you are well, try to read a book or borrow a movie/tv show to watch. I have been watching Grey's anatomy season 1 to 6 since I have this illness (starting beginning Jan 2013)
18 May 2013
Hello I know this post is old but wondered how you are doing. I just got diagnosed with dermatomyositis in April. All new and frightening.Put on 80 mg prednizone had arythmia palpitations felt like I had 80 cups of coffee yet was so weak and tired.Went to hospital in ambulance shaking uncontrollably. Dose lowered to 60 and had to take ativan to cope with the nervous anxiety it set off. Now on Methotrexate once a week and a lowered dose of prednizone to 40 mg until blood work in 2 weeks.Using clobetesol for rash on hips and arms. Taking folic acid. Terrified of my future.I am 65 with other health issues.Had polio as a child and thought that would be enough to overcome in ones lifetime. Hope you are feeling better and perhaps Ill hear from you. :)
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