Feelin’ Low & Defeated
AnonymousSeptember 2, 2010 at 12:12 am
I go in again on Saturday and Sunday for IVIG and Solumedrol, and am glad of it. I guess part of my downcast state of mind the past few days is like — I [U]was[/U] feeling really good.
I was kind of making plans in the back of my mind to heading back to the gym, getting out and catching up a little on my photography, etc. (That’s my thing too Jason and at the worst of this, I couldn’t even push down the shutter 🙁 . Total bummer. Jason, do you have a website or post on Flicker?) Just kind of hopeful of getting back on with my life. I guess I was under the false (hopeful) impression that I was different. It wasn’t so bad. I was cured or had hit a plateau of permanent remission.
And what I realized is I’m still wholly and totally dependent on these drugs to just keep me even. Enough time between treatments has led again to feet numbing out, hands numbing out, agility slipping, balance again a bit unsteady. And this inability to be “a part of” puts some strain on relationships as well. I’m constantly left feeling “less than.”
Don’t ya sometimes just wish you’d like been hit by a bus or something so what was goin’ on with you was kind of real and obvious to the outside world. This crap we’ve got, at the stage I’m in anyway, doesn’t really show except for slow and clumsy movement. But the way my body feels — tired, overheated, numb, clothing feeling awful on my skin unless I’m wearing really, really soft material, oh let me count the ways — a lot of the time makes for a generally less than happy camper — YUCK! I’m not really nasty or disagreeable, or anything, just not too much fun or very much with it.
Anyway, I know that this too shall pass. Hope and energy will return in time. And I’ll regain my spirit again and be less concerned with how others are (or aren’t) judging me. But I needed to dump some of this tonight rather than letting it fester. And I thank you for bein’ here.
AnonymousSeptember 2, 2010 at 12:50 am
It sounds like at one point that you were at a very low point physically & then the IVIG kicked in sometime in July & you were almost your old self? How often are you getting IVIG? Once a month, every six weeks? Because it could be a simple change in the time between treatments to keep you at your best. There are people who need IVIG once a month, some every 3 weeks, some even every two weeks. Whichever treatment plan it is you need, that is what you should be getting.
BTW consider yourself one of the lucky ones if IVIG works that well for you. I have the progressive form & had 44 IVIG treatments, none of them worked. Try to stay off of the solumedrol though. Long term it will do you more harm than good.
September 2, 2010 at 9:23 am
Every one is different. For me I require 28 days. If I miss this intervel I really feel the results, even one or two days. Also the premeds I get (Steroids) affect me and my moods. I am short with loved ones and other feeling. I have now been able to spot and deal with better. I wish it was easer but some day maybe.
AnonymousSeptember 5, 2010 at 9:39 am
It is OK to get mad. In fact, if you didn’t get really MAD, I would wonder if you were alive !!!
CIDP is really hard on you. It is hard in many different ways. First off your body suffers from the disease, and it hurts and pains you in many different ways. Secondly, it isn’t constant. The pain and the intensity changes, the numbness is different day by day. One day you feel good, and another day you feel like crap. Then people look at you and wonder what is wrong because from the outside, you look just the same as you did before.
If you aren’t frustrated, you should be !!
Remember this. You have nothing to prove to anybody. If they had to live your life, they would run away from it so fast it would be silly.(if they could). They just don’t know, or don’t care, or worse, are hateful people. One thing you will learn with CIDP is tolerance with your fellow humans. You have to.
Some people you can stay friends with, some you will ignore, some will ignore you, and that’s OK. You can trust the one’s who are left. They will accept you for the person you are. They won’t question, they will assist, they will be there when you need them. And with CIDP, you will need friends.
Just try to remember to rest when you can, and rest when you need to. CIDP can wear you out, and you don’t recover as fast as you did before. That won’t change. You will have to adapt to that.
But, you have every right to vent. We all get mad from time to time. It hurts worse to keep it in. We have all battled some of your battles before. Maybe we can help.
AnonymousSeptember 5, 2010 at 6:51 pm
One thing about IVIG? Tho? It isn’t a drug per se? It’s essentially a ‘pastureized hydrolyized blood-product’. Sooo, somehow? It’s more tightly controlled than many/most drugs. And, sadly a heap more expensive but for insurance!
Come my 4th week and due for new infusions? I am like a dog who hasn’t eaten for a week! It’s not like an addiction, more like I am missing something very essential to my well-being.
Simply put? ‘Something’ is either missing or awry with my current immune system. The IG is the one thing I can take that sets things onto a more even base.
One important thing YOU should keep track of is how good you feel during, right after and then each day from there till your next infusions? Why? So the docs can know IF what doses they are giving you and how often are effective! There should be lots of blood work testing your basic immune functions if you’ve just started, and they should continue for about 2-4Months. Then your docs, if diligent? Should be able to adjust your doses and schedule to keep you on a positive track.
Nancy? I tell you, what you are describing about the despair is soo true! I’ve been there. I no longer tell friends much when asked:’How are you Doing?’ Because I know they’d be uncomfortable with whatever I had to say about IT.
And they DO!
When I got this? I did NOT take a simple diagnosis of PN as the true diagnosis. Why? Because of sites such as this. I learned and read and listened to my body which said? Get me diagnosed! And I did what I could while I could when I could….and I GOT IT! I’m now 8 years out. And still trying to get ‘better’. We can and we will!…. Just don’t give up, please!
Hope and good things soon for you!
September 6, 2010 at 10:31 pm
hope youre feeling better now with the ivig—dont ever feel bad about venting!!!! keeps us sane. This is a horrible disease–comes on unexpected–its not like its well known, so nobody has a clue what it is all about—i feel like its taken everything too–i used to ski all winter, run 5 miles a day, teach exercise classes at a local gym. coach all my kids elementary and town sports, play all sports, aced the military pt test while ennlisted —and now i feel like im walking at snail pace and couldnt run if i had to!!!!!!! i try not to complain because i know there are people worse off than i am—-but i think we all have those days when we wonder why we were the ones that had to get this horrible disease and its hard not to get angry about it. Lori
AnonymousSeptember 8, 2010 at 9:30 am
Venting really does help. It is often hard for me to imagine that a body goes from fine one day to nothing the next. Depression is very common and that is why this site is such a blessing. Here you can talk to people that have gone thru the same experiences or at least some of them..
AnonymousSeptember 10, 2010 at 10:10 am
I react to IVIG’s very well. I use to get them three times a week but now we are trying to get to two week intervals. My disease started out as GBS and now has become CIPD twelve years ago. I just had a serious relapse 16 weeks ago where I lost all function again including movement in the arms and legs. I just started walking 6 weeks ago with a walker and now I can walk but my balance and leg weakness is still a problem. But I thank god for letting me get up and walk and function without help. You have too be strong and keep your head up. Every little step you take forward is a huge one in life. You will always have friends on here who understand what you are going thru and if you need support just ask any of us. We are a very unigue group of people with a rare problem that ISN’T understood by MANY!
AnonymousSeptember 14, 2010 at 10:21 pm
[QUOTE=Gemcutter]I react to IVIG’s very well. I use to get them three times a week but now we are trying to get to two week intervals. My disease started out as GBS and now has become CIPD twelve years ago. I just had a serious relapse 16 weeks ago where I lost all function again including movement in the arms and legs. I just started walking 6 weeks ago with a walker and now I can walk but my balance and leg weakness is still a problem. But I thank god for letting me get up and walk and function without help. You have too be strong and keep your head up. Every little step you take forward is a huge one in life. You will always have friends on here who understand what you are going thru and if you need support just ask any of us. We are a very unigue group of people with a rare problem that ISN’T understood by MANY![/QUOTE]
Wow, I just saw this post. What a kind and truthful post. If we don’t understand here and have compassion, people won’t anywhere!
I am so glad to hear of your improvement after a relapse! 😀
My balance and leg weakness is fairly stable for me right now…but is a problem. I am walking unassisted though… A rare trip or ‘stumble’ and great effort and pre-planning for simple activities like opening a door, etc. Otherwise, I “look” perfectly healthy and I know people wonder why….
I hope your recovery continues!!!
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