PDA

View Full Version : Will you ever feel normal again?



Tootles
04-06-2009, 04:54 PM
Hello! It has been 10 months today that I found out I had lupus. Nothing has ever been the same since. Do you ever get your enegry back? It seems like nothing has improved since I was first in the hospital (except for my platelets are normal again). Do you think it is the meds or the lupus that is causing me to feel tired, headaches and alot of other aches and pains. I have always tried to be very positive and say that is going to get better one day. But 10 months later I am getting discouraged! I can not work full time because I get such extreme fatigue and headaches. I also feel like I am not a very good mother to my 7 year old because there is so much that I am not able to do with him. Sorry for going on and on I am just getting so tired of not feeling well, I just want to feel half way normal again!!

Thanks for taking the time to read this, I do not have anyone that understands what is going on with my health.

Thanks, Deb

current meds: plaquenil (400 mg), prednisone (7 mg), cellcept(1500mg),calcium, multi-vitamin, prilosec, amitriptylin, allegra D, ambien,tetracycline,

froggal
04-06-2009, 05:03 PM
I dont know how to say it without sounding negative, but no. I havent felt like myself in over a year. It is really easy to get discouraged especially when you dont have a good support system (I dont have a good support system either) the upside is that you do learn to deal with it. I journal everything I do so I can always look back and try a determine if certain things are causing certain side effects. Be hopeful because even though it does not get better is does get easier if that makes any sense at all. I am new here but I am always willing to listen if you need an ear or just someone to talk to!!

ssingh
04-06-2009, 05:04 PM
It is more Lupus and some medications.

sick n tired
04-06-2009, 05:52 PM
Hey Tootles,

I like to refer to the change as my "new normal"...whenever anything big happens in your life that wasn't there before it at first is considered abnormal, but when it decided to come and stay for a while it becomes the new normal...at least that is how I see it.

That said...things have totally changed for me. Some for the better if you can believe it. The upside is if I have to be in pain, and ill then at least the monster has a name and I am believed... not considered lazy, or a hypochondriac. Downside, of course, I can't do everything I wish to do...sometimes, though I almost feel almost like myself...

Rayhanah
04-06-2009, 09:57 PM
Lucky you! Haha! You take only 7mg of prednisolone. Im taking 60mg now and woah! feel disoriented like crazy. So headache and light-headed. Night time cannot sleep like ghost. Sighs.

maguadalupe
04-06-2009, 10:18 PM
hello my name is maria
i been dignosed with lupus for about 9 yrs i have 4 kids i know what you are going though always tried just take one day at a time . your child will be ok. i use to take prednisolone i stop taking it becuase i felt like itwas to many of meds. i only take planquenil,water pill . eat health i use to have headache i top drinking caffeine and chocolate it worked for me . dont' worry justto spend time with your child plan game with in while you are resting in bed . sometime rent a movie . find way to have find everything will be ok
maria

NoodleMom
04-07-2009, 08:34 AM
Oh Deb, Im right there with you. it has been 17 months since my diagnosis. I am just now beginning to have some strength, energy and stamina. I can do dishes with out having to sit in between sink fulls, wash laundry if it is brought down. I sit on a chair to sort and transfer. I stick it all back in the basket and they bring it up. I dont shake rugs. Tried that and nearly fell of porch and ended up in the ER with a concussion. Yeh I think Im the only person who ever got a concussion shaking rugs. I fell backwards and hit my head on the concrete.
I'd have to say that for me walking or the lack of being able to has been the hardest for me.
I am using a walker now to get around. I have a cane also and on good days I can use it.
Building up strength, energy and stamina is my job now. That and working at not over doing it so I flare again. Oh I almost forgot my most important job of each day is to connect with each of my six kiddoes during the evening.

Keep yer chin up Deb.
Kasey

Oluwa
04-07-2009, 09:55 AM
Hi Tootles...

First...You are a good mother. A mothers love is not based on what you can or can not do. The bond is tighter than that...create things you two can do together..it is all about the time shared. Playing board games, cards...movies, baking cookies, drawing...start a small aquarium...swimming, which by the way is good for the Lupus body...

I don't have children but I was one myself...smile...

We usually have to redefine our normal. My 'norm' is tired, fatigue, constant yawn, pain in my joints and muscles. Not all muscles, not all joints at the same time. Today, hip, shoulder and ankle joints...muscle group....upper back, thighs and forearms...

Could be your medication too..

I evaluated yours...
Amitriptyline ....headaches, drowsiness, weakness or tiredness

Tetracyline.....Headaches....

Ambien...drugged feeling, back pain, chest pain, lethargy, drowsiness...

Prednisone....Muscle weakness

Cellcept...malaise, neck pain, arthraglia (joint pain).. myalgia (muscle pain..)....

Have you been evaluated for Fibromyalgia Syndrome?

Have you read the Sticky on Home Care....are you eating properly, exercise....stretching helps oxygenate the body...

Ask your doctor about Deplin...since you are on Amitriptyline it may help boost the effects of it..creating more energy. I am on it alone.

Ask your doctor about CoQ10 supplement, that may work for you...supposedly recharges cell...may improve symptoms of chronic fatigue. I was on it, for me I didn't notice a difference but it may for you.

Also ask about a Super B Complex for energy and stress....I supplement with that and also with Fish Oils daily...


Please don't be hard on yourself...saying negative things about you to yourself. Lupus is hard enough on us...so we don't need to be too..

Head hugs..
Loves,
Oluwa

brandichi
04-07-2009, 11:02 AM
Hi Deb,

First, I agree with Oluwa completely. We deal with so much negativity all the time that it's important to be gentle with ourselves and take the time to notice all of the things we CAN do, instead of focusing on all that we've lost. Of course, that said, I sure fall into my pity parties every so often...but I'm sure you're a great mom. It doesn't matter what activities you are able to do - it's the time you spend together, creating memories. And sometimes that's just popping a bunch of popcorn and watching a great movie together under a tent of blankets. I'm not a mom, but I am an elementary school teacher, and one of the things my students say all the time is that they wish their parents would just take the time to talk to them, listen to them, and just be with them. Not giving them half their attention while on the phone or computer...just time when they feel important and loved.

About normal...I was diagnosed with lupus (SLE), Rheumatioid Arthritis, Sjogren's Syndrome, Reynaud's Syndrome, and Celiac 2.5 years ago, and my life is not the same as it was before. My normal today is not what most people would consider 'normal'. But there are days I can cook a whole meal, not just reheat leftovers. Some days I can do the grocery shopping and stop at another store, and not totally collapse the second I walk in the house. I learned to deal with the daily pain, and do what I can with my limitations. For me, normal means feeling like I have the flu all the time. But there are good days, in spite of it all. That's what I try to hold on to, what keeps me going. We understand exactly what you're going through, because all of us are too. Lots of hugs to you, Deb.

lucky7
04-08-2009, 11:01 AM
Hi TOOTLES! Sadly to say that "no" you will never feel like you did. I havent in 3 yrs now. Im still adjusting to changes. Its going to be an adjustment for you unfortunately. Its hard but it is what it is. I do what i can to help myself and what i cant control i work with it to make it less explosive. Sorry you have to go through this but having people who are also going through it makes a BIG difference. These are GREAT people on this site, i cant say it enough. :grouphug:

tasha
04-09-2009, 11:45 PM
i go through ups and downs, but i've noticed that since i started exercising daily and getting massages regularly, i have way more ups than downs. i feel pretty normal a lot more often. there ARE ways!

lucky7
04-11-2009, 10:41 AM
Good for you Tasha! I cant stress exercise enough!!! It HELPS me soooo much!! I get through my days sooooo much better having done it!!!

iseedeadmonkeys
04-11-2009, 11:22 AM
Damn well thats just answered all my questions lol......oh well i guess i could take up knitting or summin!! hahaha seriously though i was thinking earlier when playing utensils things will never be the same again its just a case of weighing up ure diet, meds and lupus, hmm i guess we could always look forward to that "cure" hmmm yeah right

ISDM
x

tasha
04-11-2009, 06:40 PM
don't give up deadmonkeys! plus, thee's always the possibility of remission :)

lucky7
04-11-2009, 07:05 PM
YOU CAN DO IT ISDM!!!!! :yes:

rob
04-12-2009, 06:52 AM
Hi Deb,

I'm so far away from "normal" that I don't think I would even know what it was if it presented itself. For me, no, I'll never be normal again. But that doesn't have to be a bad thing. I was diagnosed with SLE five years ago, and I've stopped looking at my life, and my health in the terms of normal, or not. I either have a good day, or a bad day. I do everything in my power to avoid the bad days, and I take the good ones and run with them whenever one presents itself. On the good days, I still have Lupus, and I am not "normal", but I have fun anyway. There are things I can no longer do, but I've also discovered new, and exciting things that are well within the limitations Lupus has put upon me. I hate to sound like a cliche, but I learned that just because the path I had so carefully set out for my life can no longer be followed, it does not mean there are no good alternate paths to choose from. Sometimes the alternate path proves to be even better than the original.

Rob

Julie46
04-12-2009, 07:40 AM
I only just started taking Plaquenil on Good Friday, and feel exactly as u described. Fatigued, pain most places (wrists/hands/hips/knees/elbows). I feel like I have a flu everday for over the past year. And headaches are occuring almost daily. So, personally I think it's the Lupus because I haven't really been on anything til 2 days ago.

As for the guilt for being sick, I know how u feel, but when ur down, watch movies in bed with the kids and hopefully train them to be your little helpers. I know kids like to do things. When ur feeling not too bad, do more things with them then.

Hope you Have a Happy Easter!!!!!

iseedeadmonkeys
04-12-2009, 08:54 AM
o0o0o0o0o yeah remmission....hmm theres always tht, nah dont worry bout me im cool with it mostly sometimes!! lol just having a bubble day

And hey remember the normal days we used to have when we was well? surely ya all can remember them days u could party till all hours in the morning. sleep 2 hours then get up for work? yeah baby i miss those days they happy times......i will be there one day, if not we got our memories init, no one is "normal" tho are they?...................

Tootles
04-13-2009, 07:02 PM
Thank you very much for everyone that replied. I am just having a hard couple of weeks. It is so nice to be able to come to this forum and post because you get so much support and understanding.

Thanks again,

Deb

TobyJug
04-14-2009, 04:24 AM
just wanted to give u a "chin up"...

lucky7
04-14-2009, 10:30 AM
Just wanted to say "SO NICELY PUT ROB!" WOO HOO to you!!!!:banana: