so tired of feeling like this!
AnonymousDecember 21, 2008 at 5:38 pm
Felt pretty good yesterday, went to adaptive ski program at local mtn and volunteered to ride in bi-ski for training. It was hard work, but lots of fun. The bi-ski can be steered easily like a white water kayak with body wt shifting, and then it is tethered by an able bodied skier.
It was my job to be the person on the bucket (seat) to that the tethering skiers could practice.
After I got out of the bucket, I had difficulty changing my movement pattern to ski on my legs, my balance was off.
Today, I woke having difficulty moving, and had a small seizure.
Recovered, drove to church and back in the snow. On the way home all I wanted to do was lie down, and sleep. Driving was difficult, because of me, not the snow.
Got home, and ate, then fell asleep in my recliner. Woke with full body weakness, arms, and legs. Sat and cried!
Resting my arms now as I type.
I am so tired of weakness! I am so tired of this stupid disease!
I wish there was something I could do that would build strength that would last instead of being intermittent.
I would appreciate any hints.
AnonymousDecember 21, 2008 at 8:33 pm
I don’t know what to say Erin other than I empathize with you in a big way. Hubby has CIDP and just had his two days of IVIG, and of late he has been so tired after even minor activity. We are in the midst of terrible weather and we have horses. He tries to come to the barn and help with the chores, but after wheeling a wheelbarrow he is so exhausted he has to go and sit in the tack room and recover for 20 minutes or so before he can do anything else. I think that he needs to start doing some mild exercise at the pool and re-gain some stamina slowly. He had a bad month in October, now feels generally better other than the dreadful fatigue. I think pacing oneself is the key and to avoid over exertion to the point of real muscle fatigue. Also with you I wonder if the cold exacerbates things–as I am sure seeing that in my husband. I am thinking of you and hope that things improve.
AnonymousDecember 21, 2008 at 10:47 pm
I wish I could tell you there is way easy way to do it. Each of us seem to react differently. However there seems to be one common thread. That’s to go slowly and have patience. Right now it sounds like you body is telling you that you over did it.
I had a little problem adjusting to the things that use to do and the things that I can do now. Of course in my case a lot of that has to do with my age. All I can tell you is to hang in there and not give up. Take it one day at a time. You can beat this, but it is going to take time.
Talk things over with your neurologist and see what type of exercise plan he or she would recommend. Please take it slow. The old adage about “no pain no gain”, just doesn’t apply. As a matter of fact is can do much more harm than good.
AnonymousDecember 21, 2008 at 11:11 pm
I hadn’t thought of the cold’s play in my bout of weakness today.
I did get cold in the bucket. I don’t usually get cold with regular skiing, in fact I generally sweat cuz I concentrate hard to work.
Thanks for that hint Laurel. I’m gonna keep that in mind. It will be important when I’m teaching young children this winter, that I keep warm enough.
Hey Jim, I have talked with my neuro abt exercise… He is ok with me skiing and swimming and going to curves when I am not too fatigued. His big push is for me to avoid getting fatigued… I’m still working on that!
Wondering if others have problems with seizing when exhausted, or is that one of my specific complications?
Thanks for the feedback!
AnonymousDecember 22, 2008 at 6:20 am
Oh my goodness Erin, if I was your Mom, or sister, I’d strap you right back in your bed for a week! What on earth are you thinking girl? You went driving after a seizure? Clearly you are pushing yourself too hard and you need to slow down – it’s a marathon, not a sprint.
BUT, I do have some interesting information about the fatigue issue… not all of us with CIDP have this debilitating fatigue, its just a subset and according to my doctor “it’s recalcitrant” – their words for “we can’t figure out why you don’t feel better after all the drugs we are pumping into you.” Because I crumple under the pressure of my doctor and husband I agreed to try a low dose of provigil as an aid to buildling up more strength and energy. The idea is that I use the provigil and do specific strengthening exercises – rather than just run around like a nut – with the intention of building more muscle which increases your metabolism and thus energy. Well I do have a love/hate relationship with the provigil because it is not without side effects but this little manipulative plan they came up with is working. I’m not saying it hasn’t been hard, I’m just saying that after six months I can sustain an energy level WITHOUT provigil that I could not before. I don’t take it every day, sometimes I go a week without taking it. I have to pay attention to my body, if I don’t have any energy in reserve then I don’t take it otherwise I pay, and pay and pay. I don’t treat it like a rescue drug and I wouldn’t use it for something like your first attempt at negotiating Kilamanjaro because it’s fairly easy to overdo things on provigil – you feel pretty good, you feel like you can keep going right up until you fall down, and then you pay…
I was kind of an experiment of my doctor’s and since it seems to be working I feel OK about passing this along with the huge caveat that everybody is different and weirdness abounds in my body. 🙂 If you want more details on my trials and tribulations let me know but honestly it’s the only thing that has gotten me up off the couch for years. I take 1/8 to 1/4 of the dose he prescribed, more and I overdo it and turn into a dusting maniac.
December 22, 2008 at 9:16 am
Erin, I too am tired of this and it hasn’t even been a year yet. I was sitting in the chair at the hospital Friday getting a PE thinking how tired I was of feeling poorly and getting poked and realizing I will likely have to do so the rest of my life. I’m 52 and hopefully have many more years ahead. I know that isn’t encouraging.
What does encourage me though is the love and support I have from my sweet wife, my children, my family, my Church family, and the wonderful folks here. I am so blessed.
What keeps me going is that the treatments have improved my quality of life and I set life goals so I always have something to accomplish. I also know God has a purpose for me still being here.
I pray that you too are surrounded by love and support. I pray that your quality of life will steadily improve. I pray that God will continue to give you purpose. And I pray for a cure for this yucky disease.
So hang in there Erin and thanks for posting. May God grant you a Merry Christmas and a blessed 2009 for you and your family.
AnonymousDecember 22, 2008 at 10:40 am
I agree with everything that has been said.
I’m sorry about your flare up. I think alot of us are flaring up right now. I think the weather, the stress of the holiday, etc all play a part in it, too.
I dont know. Just my opinion.
I admire your determination and I hope you are feeling better very soon.
December 22, 2008 at 3:26 pm
Erin, Gary, Stacy, everyone,
Don’t loose sight that we have medicine. It has been 2years and 3 months since dx for Kevin. I too worry about all the years ahead, but every time I get pissed, I try to remember we have a treatment. I just try to remember that a cure is in the future, I know it. The lessons we learn while waiting for the cure will make us stronger than we can imagine. Even though it is Kevin with the cidp, I feel like it is me, I hope you guys don’t get mad that I include myself.
Dawn Kevies mom
AnonymousDecember 22, 2008 at 9:39 pm
Thank you all for your compassion and prayers.
I went to my pcp today, and finally got agreement that more had to be done for the adrenal insuffeincey that I have been dealing with since August. I have cortef to begin starting tomorrow, as well as an adrenal nourishing tincture.
I have told I should start seeing an improvement tomorrow!
Two of my three young adult children will be here tonight and know I have been having difficulties functioning. Hopefully they will notice that the house is dusty, and dirty, as well as the Christmas decor is still in storage.
I have been putting all my spare energy into training to teach adaptive skiing this year, as I went through the program last year and will be forever blessed by all I learned and healed through the program. The director knows that I am still healing and sometimes I will only be answering the phone and greeting handicapped athletes. Still it is something I am very passionate abt, and a joy I wish to share with others.
I do have much to be thankful for… loving family and friends, a great neurologist, and continuing to heal still after losing all reflexes for almost twenty years and having my autonomic system deteriorate signifigantly.
I appreciate the reminders abt it being a marathon not sprint. It is hard to remember when so many around me are living with what appears to be much more ease. I am very thankful for the reminders and encouragemetn of this group.
AnonymousDecember 23, 2008 at 6:52 am
Its cold weather that takes it out of me and real hot humied weather.so if there is such a place 75/85 no humidity is perfict. lol but good luck and rem, slow down dont pull a me. cause I crash and burn all time. Guess what wife says is true men dont listen we hard headed. lol but at least I enjoy my self before crash.I give all glory to god for me being alive and being able to do the little things I can,so dont lose sight of who truly is in control and dont forget god so loved us he gave his only son so we could be free.And if he has,nt healed us yet theres a reason.We may be the ones who make enough noise so gov realizes this is disability and does stop some of us from working may be this is why? There is power in numbers!!!!!! See we can do some good if we all pull together. Some thing to think about .Thanks for time Jim
AnonymousDecember 23, 2008 at 7:31 am
Hi Erin! I hope you are feeling better today! I know the cold weather with me alway’s causes my CIDP to act up more. Extreme hot weather and extreme cold drives me nuts. I get alot of numbness and tingling during those time frames.
And the Rituxan treatments for me was a failure. I could not tolerate it! Now we are trying high doses of prednisone and low doses of Methotrexate since I have had that before many years back. I hope that works!
I hope your Christmas is a nice one and you are feeling better to enjoy your Holiday! Hugs
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