I am so frustrated! I feel like people without this condtion don't really understand what it means to really not have the energy needed to do things and that some of us have such limited energy, we have to measure every decision by that finite amount. On top of the general fatigue caused by this condition there is the treatment factor. I take methotrexate twice a week which wipes me outevery Monday, Tuesday and part of Wednesday. I can't even walk my dog or do what I like to do most which is pastel painting. I have to wait until the end of the week to do what I can and I have to be very judicious about the choices. So I make lists and choose from there whats most important. The problem is knowing when to say yes or no to other peoples needs and requests. I feel very guilty about not working anymore so I assume most of the house care. Dinners, shopping, cleaning etc. Much of which takes all of my energy. So if by chance a "vacation" gets thrown in, it's me who does the prep for it which makes me want to just go to bed! I have a hard time saying no to these trips because my partner works so hard which enables us to have what we need including insurance so I don't want to deprive her of this down time. Its hard for me to say I'm not up for going or I need more help with the prep. So I usually suck it up and push myself, and suffer in silence. I hate it! I just wonder if any of you know what I'm talking about and how you deal with this. I am getting so depressed from this cycle of 4 good days three down and little energy EVER! Thanks for letting me speak my truth.
I don't know whether I'm coming or going half the time. I stopped working Feb 2012, and was approved for disability benefits by SS. My wife has multiple sclerosis so she has believes that she knows everything that I suffer. All the pain, fatigue and numbness. Just like I could never fully understand all of her disease she can't fully understand this.
You are absolutely right that people do not understand. And it is enough to make a person want to scream. Around here they watch over me like an old setting hen, and try to control what I do. I can't cook, half the time I have to go out early in the morning while they are asleep if I want to go alone. People see me using a cane or using my wheel chair and want to the person they knew a year ago. Others can't understand why I don't show up every Sunday, It get's old explaining that the disease knocked me flat.
Hello I think I can understand how your feeling. I think we go thru this I know I have ask myself why me and for me it’s not about the med’s, it’s about the doctors I have try to find for help. REALLY, I can’t get help/ what meds? I don’t get nothing for my pain or help except pain pills.
I was riding in our car just a few weeks ago when something like I call weakness came over me so bad I couldn’t hardly move…it was so awful…I was coming back from church. I just felt so weak…only others like US would understand I think? I made my husband get off the fwy and take me to the ER…big mistake…they don’t know anything, they do the regular testing of your blood…they can’t fig out what is wrong. I came to realize there isn’t anything anyone can do for me health wize. I am feeling all alone with my illness. So when I read your story…I can understand really…although I don’t get any IVG’s. I now understand why, because after reading another post about the costs…I know why I don’t get help…I am on medicaid & medicare and they probably won’t pay for it. So weakness I felt must be part of this illness? I hope you found some help. I pray for you. thank you for telling your story.
It is nice just to be heard, and to get to vent. My neurologist quit on me, (retired after an accident) and I am waiting to see if this new neuro in town is going to be any good. If not We will have to travel over 50 miles to see a neurologist. I can't take IVIG, it caused me to clot badly after the first attempt, so at some point when it gets bad enough I will have to try plasma pharesis. I find that Tramadol works well for the nerve pain without the narcotic effects. I don't like taking narcotics as I have found that my quality of life goes down hill very quickly.
I would check with Medicare provider to see. If your doctor determines it necessary they may cover it. It was four to five thousand dollars a bottle and I had 6 bottles and did not have any out of pocket cost, and I have coverage under the military and they are very picky
ruthie4bearz said:
Hello I think I can understand how your feeling. I think we go thru this I know I have ask myself why me and for me it's not about the med's, it's about the doctors I have try to find for help. REALLY, I can't get help/ what meds? I don't get nothing for my pain or help except pain pills. I was riding in our car just a few weeks ago when something like I call weakness came over me so bad I couldn't hardly move...it was so awful...I was coming back from church. I just felt so weak...only others like US would understand I think? I made my husband get off the fwy and take me to the ER...big mistake...they don't know anything, they do the regular testing of your blood...they can't fig out what is wrong. I came to realize there isn't anything anyone can do for me health wize. I am feeling all alone with my illness. So when I read your story...I can understand really...although I don't get any IVG's. I now understand why, because after reading another post about the costs...I know why I don't get help...I am on medicaid & medicare and they probably won't pay for it. So weakness I felt must be part of this illness? I hope you found some help. I pray for you. thank you for telling your story.
I am so glad I read this. I have only recently been diagnosed and I recognise most of what you say. I was not told any of this so didn't realise this was all related to the CIDP so it is a big relief to know I am not alone. Thank you for sharing your story.
bteeter said:
Thank you,
It is nice just to be heard, and to get to vent. My neurologist quit on me, (retired after an accident) and I am waiting to see if this new neuro in town is going to be any good. If not We will have to travel over 50 miles to see a neurologist. I can't take IVIG, it caused me to clot badly after the first attempt, so at some point when it gets bad enough I will have to try plasma pharesis. I find that Tramadol works well for the nerve pain without the narcotic effects. I don't like taking narcotics as I have found that my quality of life goes down hill very quickly.
I would check with Medicare provider to see. If your doctor determines it necessary they may cover it. It was four to five thousand dollars a bottle and I had 6 bottles and did not have any out of pocket cost, and I have coverage under the military and they are very picky
ruthie4bearz said:
Hello I think I can understand how your feeling. I think we go thru this I know I have ask myself why me and for me it's not about the med's, it's about the doctors I have try to find for help. REALLY, I can't get help/ what meds? I don't get nothing for my pain or help except pain pills. I was riding in our car just a few weeks ago when something like I call weakness came over me so bad I couldn't hardly move...it was so awful...I was coming back from church. I just felt so weak...only others like US would understand I think? I made my husband get off the fwy and take me to the ER...big mistake...they don't know anything, they do the regular testing of your blood...they can't fig out what is wrong. I came to realize there isn't anything anyone can do for me health wize. I am feeling all alone with my illness. So when I read your story...I can understand really...although I don't get any IVG's. I now understand why, because after reading another post about the costs...I know why I don't get help...I am on medicaid & medicare and they probably won't pay for it. So weakness I felt must be part of this illness? I hope you found some help. I pray for you. thank you for telling your story.