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Posted By : will25 - 2/26/2011 11:38 AM
hi so i guess i should start with saying i have cf. im 25 and had it prity much since birth. i was also born with a hole in my heart and have a liver complaint, thankfully that seems to keep its self in check (for now). i live on my own and have no family that can support me emotionaly or otherwise (i was in foster care from the age of about 10). i some times find it difficult to motivate my self and currently, even though on the same medications 'ALOT' as all the cf sufferers out there, i am not taking and havent been for about 3 month... i am kind of stuck in limbo. its happend a few times it stats out that i miss a day, then it turns into a week and now three month. i have had longer stints of not taking them and i get really ill. and yet i still cant seem to motivate my self to go get proscriptions or even take what i have in the cubard. to say im bad at handeling my medication is a uderstatment and i dont want to feel like this anymore... anyone with the same problems with advice?

Posted By : Iunderstand - 2/26/2011 1:44 PM
Hello Will25: I feel your pain. Try to talk to at least two of your closest friends about how you feel. Meditate and concentrate on a spiritual level what ever that may be for you. Just talking will do wonders. Also speak with your doctor and let him/her know that you are having problems taking your medications, they can help you in this area. Try to join a support group to surround yourself with people who are going through similar situations . CF as Chronic Fatigue? If so, I felt this way as well. I tried all types of things to boost my energy. For years I was getting more fatigued. I finally found some great doctors and they tested my blood and found I had very low potassium, vitamin D and magnesium deficiency. Make sure those numbers are okay from your DOCTOR. I am feeling better with my energy level since I have been on supplements . I still have a ways to go but I am hopeful. Hang in there and reach out to others. There are caring people and doctors who really want to help. Don't give up until you find the right balance. Do something nice for yourself like an expensive piece of chocolate or a funny movie. I will keep you in my prayers.
Be Well

Post Edited (Iunderstand) : 2/26/2011 1:01:56 PM (GMT-7)

Posted By : will25 - 2/26/2011 2:26 PM
hi no its cystic fibrosis not chronic fatigue but thanks for your words of support. its hard to keep my self motivated all the time when i only fighting for me... as in nobody to keep healthy foor. i work better when im doing something for others

Posted By : Gemsi - 3/3/2011 10:53 AM

I'm 25 and was diagnosed at 2 years old.

I understand very much how you feel. Sometimes all the pills and potions and physio can be so tiring and it's hard to find the energy to do them. I only really started taking my meds when I started having antidepressants as I knew it was vital I didn't miss that dose as then things would get really messy in my head again. I have always been good with my Creon, my belly gets bad if I just miss one dose and once I moved in with my husband 8 years ago, it was just way too embarrasing to miss them. Infact my will power with any other meds and especially physio over the years has still been really dreadful. Without feeling an immediate effect of not taking things they just don't cross my mind.

Is it possible for someone to pick up your medication for you, or to have it delivered to you by the pharmacy? A lot of the time life can get in the way of going to pick up meds and when you don't really have much energy or will to take them, that can feel like the biggest task. The other thing is do your pharmacy do nomads? In the UK there are some pharmacies who split your meds into sets of days and times. I don't use this service as I have a husband who does that bit for me. All I have to do then is have them next to my computer in bright coloured pots where I can see them and take them in a morning and before I go to bed. I keep my acapella, inhalors and nebuliser there too but I still find it hard to remember them unless I'm feeling particularly chesty and know I will feel the benefit immediately from them. Even if you can't get someone to arrange meds for you, be strict and set them out yourself once a week at a certain time, during a certain TV program or something. They're quick to grab then and you lose the daily effort of having to seperately get what you need from the medication packages. It's only a small thing but can make a big difference.
Hope you can find something that works for you.

Post Edited (Gemsi) : 3/3/2011 9:56:18 AM (GMT-7)

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