View Full Version : Dillema - sorry long rant (just don't know what to do)

08-25-2009, 10:46 PM
Over the past week I haven't been feeling to well. I had to sleep for more than half the day just so that things wouldn't get too bad. :sleepy: Just as well I got a steroid shot the other day if not the pain would have just grown.

Last Friday, I felt half dead but went to my piano lesson anyway. Needless to say, it was disastrous. I couldn't concentrate, coordinate myself and had memory lapses which resulted in a whole bunch of wrong notes. I could tell he was trying to be patient but knew I was pushing it. In short, it went from bad to worse to awful in a space of less than an hour. In the end, I told him I was too tired and asked to stop.

At the same time, my doctors and family is worried that this will make my illness, physically and mentally worse as there is a time pressure to learning the pieces, something which my illness prevents me from doing it as quickly as I used to.

If I take my current condition as it is, a 40 minute performance is currently logistically a big ask. Currently, I would be lucky if I had enough energy to concentrate, not be in too much pain or too stiff for a descent 30 min practice. I woke up with my right arm being sore and stiff like I've used it to play badminton or something like that but the thing is, I didn't practice yesterday nor did I do much writing or use my RH too much. I'm not sure if I can improve quick enough and redeem what ever is left as it is halfway through the semester.

According to my psych, I am supposedly very depressed and have been told by my GP that most people probably wouldn't even be studying. I have been hanging in there and hoping that somehow, there would be a break through and everything would work out but unfortunately, this hasn't proven to be the case yet. The main thing is that I don't end up further stressed up as stress worsens depression and lupus, which would make me worry more and that in turn will make me worse. As you can see, it is a vicious cycle that I need to get out of - the solution of which they think may lie in me giving this up.

I am torn and don't know how to explain my condition to him. I've told him that I wouldn't be coming this week as I didn't feel substantially better and the same thing would happen again which would be a waste of both our times and very frustrating for the both of us.

I used to love it and be good at it. It just feels like someone has taken it all away from me. I'm at the stage where I have to seriously consider dropping it if alternative arrangements can't be made.

I just don't know what to do. :hissyfit: Should I leave it or push myself?

08-26-2009, 02:24 AM
Hi Scarby,

I'm sorry you aren't feeling well. And as far as leaving or pushing yourself on the piano, that's something only you can answer. I play Roller Derby but due to heavy fatigue after exertion and exercise I usually am wiped after practice and then miss 2-3 more practices. I hate that my body gives me limitations, but I like Roller Derby even when I'm not feeling totally great I will do it and feel better because I did it and am around a great bunch of people. I feel pushing myself on things keeps me from falling into very depressive moods. But I also know my limits, usually once I surpassed them :laugh: but I take the cues and rest, some days after practice I'm out sick the next day and sleep over 20 hours :sad2: So my non-answer to your question :tongue2: Is do what you feel you can do and only if you want to do it.

Sending you tons of hugs :hug:

08-26-2009, 07:15 AM
hi scarby,

you are in such a difficult phase of dealing with this beastly disease...trying to decide whether or not to push to maintain your "normal" life. I am so sorry that you are going through this, and i wish i could give you a magical answer to your question....but, i can't.

You said you got a steroid shot on friday....has it started helping you feel better....I have taken a medrol shot (steroid) when my flare was so bad that i became non-functioning....after a few days, i really felt better and it lasted for a couple of months....hopefully, your shot will kick in, and you will feel up to your practicing and lessons.

Our moderator, saysusie, remains very active in singing....but i am sure that she has had to make some adjustments....i know she will be along soon, and maybe help you with this critical decision.

I love the piano...i took lessons for 10 years from childhood through teen years....i hope you can keep enjoying this love that you have, and i hope that you will be able to give a perfect performance....

yes, the cycle is quite frightening and frustrating....you get depressed because of the pain and fatigue, then the depression causes you to stress, so the pain and fatigue get worse....this is such an unfair but real result of living with lupus....

there are many young people here at whl, and they all have such demanding jobs, responsibilities, etc. I have noticed that some of them find ways to alter their day's schedules so that they can keep up with their commitments....I hope you are able to do the same.

i am so sorry that you are faced with this, and please don't ever hesitate to come here to vent.

08-26-2009, 07:50 AM

I think a big part of living with Lupus is learning our new limitations, and finding interests/hobbies/activities that are within the limitations Lupus imposes on us. I can understand your frustration with playing piano. I play as well, and some days I can play OK, other days I can't at all.

I had to accept that I could no longer do many things because I'm no longer physically able or I would be a safety hazard. I earned my pilots license when I was 16, and I've spent many years enjoying my love of aviation and flying. But, I had to be honest with myself and accept that physical problems, and brain fog was making me unable to fly safely. I traded real planes, for radio control model planes, and I have a new hobby and activity that I love, and that I can handle.

Flying is just one example of many things I've had to change in my life because of Lupus. I don't know what the answers are for you, but I do know that we all have the ability to do challenging, fulfilling things in our lives despite the disease. Try to be realistic, honest with yourself, and be flexible. Are there adjustments you could make that would allow you to keep up with the piano in a way that is easier for you? Maybe cut back on some other activity and put that effort into your piano lessons. Often, we only have a finite amount of energy to use each day, so we have to prioritize and ration that energy to get through the day. I hope you can find some answers, and a way to continue your lessons.


08-26-2009, 03:29 PM
Thank guys for your replies and encouragement. I emailed my teacher and he said that he would speak to the rest of the performance staff and get back to me. He said it may be possible to do it at the beginning of next year which hopefully will give me some time to get myself fixed. Well it's not confirmed yet and I don't know if I actually want to do it. He was surprisingly understanding and nice about it. Thank God!

Maybe cut back on some other activity and put that effort into your piano lessons.
I don't know what to cut back. I'm not doing very much now. Just one other paper. I have a limited social life, no parties, very limited exercise. I just don't think it's possible

re mountain dreamer, yes i think the steroid kick in but i'm still struggling. the pain is not that bad actually it's more of the fatigue and brain fog that is holding me back. I had the best night's sleep last night in a long while but still feel zombified. Just as well I have a week off next week

08-26-2009, 04:37 PM
I know how you feel about the piano. I play as well and some days my hands just hurt to bad to get more than a 30 minute practice in. I have been trying to learn organ as well and that is another beast on the hands. I finally had to quit my lessons, and it broke my heart. I just couldn't justify the expense anymore.

I still teach a little piano, and that helps me feel like I am still in it. Another thing I have done is cut back the difficulty of the pieces that I play. There are a lot of lovely pieces out there that aren't that difficult. They don't require me to put in the time to master them, and I can still play some nice music when the mood strikes me. Yes, I would rather play some Bach or Chopin, but at least I can still get my piano fix in.

I wanted to commiserate with you. I am sorry about the piano lessons. I know how you feel.

08-26-2009, 05:34 PM
hi scarby,

have i already mentioned b12 shots for fatigue? i give myself a shot once a week and it really helps with fatigue.

08-26-2009, 06:11 PM
It's all about adjustments...a few years ago...for my 40th birthday, I did something I have always wanted to do...I got my motorcycle license...I rode for a while but had spine surgery which was a set back..now my neck/back bother me, and I live in a helmet state..the helmet is too heavy and I won't wear a beanie( pebbles in the face hurt!!) Along with my arms getting weak from holding the handlebars too long(lupus crap).I have pretty much stopped riding, but I have found a few less dangerous things to do..lol. We somehow adapt and yes it is very hard to do sometimes..I still haven't sold my bike....I am not ready to let go completely.

08-26-2009, 09:05 PM
Everyone is right, it IS all about adjusting to this disease and making certain exceptions in your life. There is one thing you should try before making any decisions, talk to your instructor. Tell him what you are suffering with and see what he suggests. I think once you let your guard down more people will surprise you with kindness than disappoint you. I am finishing my degree in accounting and I have been working on it for 10 years! It has been a long, hard road filled with disappointments and accomplishments. The one thing I have done for myself is right when classes start I go in a talk to all of my professors. I explain my disease and let them know what some of the problems are that could possibly occur through out the semester. I don't think I have ever had a professor turn the other cheek and tell me I am on my own. They have all amazed me with their consideration and thoughtfulness. So, don't count your instructor out just yet, give him a chance and you never know, maybe he will surprise you!!!!!!!! :hug:

08-26-2009, 09:31 PM
Well I didn't exactly talk to him directly but did write him a descent length email. I just feel like I'm being a pain as a similar thing happened last year (I was in locked away in a psych hospital and had to have my exam deferred). I knew logistically he had to shuffle things around especially considering the fact that we needed a panel of 4 examiners so it's not just him but it's the other staff as well. He may be gracious about it but I don't want to push it too far. I don't know why, but I'm pretty weary with other people even though most have been really kind to me.

I can see the theme of adjusting to this illness - I just haven't got it right after 1.5 yrs at uni.

re mountain dreamer - I have heard about the B12 shots but am too scared to ask about it. I do however have D-ribose which helps. I just couldn't take it this time around because I needed to know it the Plaquenil was working. Having said that, I think I might have to start back on it regardless because I need all the help I can get.

re busymum3 - Since I started at uni, the workload has just been overwhelming so I don't really get left the resources to play the simpler pieces for myself as what ever time I spend practicing, it has to be for my course which is a shame. But until I can get this thing in control well, it looks like that will be the way I have to go with unless I drop it.
btw, there are still easy chopin pieces that you could try - especially the waltzes (they quite are lovely)

08-27-2009, 07:44 AM
Dear Scarby:

Many of us have had to give up doing things we really loved because of this illness. Only time will tell if you will be able to continue with your piano lessons. You will have to gauge whether you can keep on with them or not. Many of us have had to alter our lives to live with this illness. It is not easy and is a real challenge. Gradually through time, many of the things I love I have had to give up. I consider myself fortunate because I was not a real physically active person like some people with lupus. I know this may not be what you would like to hear, but I am trying to be realistic about your situation.

08-27-2009, 11:39 PM
Thank you for your honesty. I myself had to give up my sports and the wind instruments. I thought piano was the only thing still manageable but it's been rough lately. For me, I think I won't give it up totally but just maybe the university study part of things as it is quite pressurized.

08-28-2009, 08:35 PM
Hi! I haven't been around the last couple of days and haven't had an opportunity to welcome you yet. Welcome!
I think you got a lot of great advice on this thread. I also want you to know that although we have to permanantly give up things we love as we learn our new limitations and abilities, there are also times when we only have to put those things on a shelf for a little while and then we can come back to them later.
I had a bad flare that lasted about 6 weeks in the late spring and had to give up Swing dancing for a while because my ankles where too inflamed/painful & I was too exhausted to complete a simple dance. This from the girl who used to go ever Tuesday faithfully and usually spends more time on the dance floor then the chairs. Now, I have come to the realization that there are weeks I can dance and weeks I can't. I have learned to listen better to my body and am learning to know when it is too stressed or tired to dance. I ended up missing almost 3 months of dancing because of that flare and it's exhausting after effects, but eventually, I did get to go back. I had to give up my weekly lessons outside of swing because dancing 4 or 5 times away was just too much for my body.
I hope that you will be as lucky to be able to keep practicing your passions too. Don't give up hope on the piano because even though today it might not look practical to continue, tomorrow it might seem possible. Take it one day at a time and do what feels best to you.

08-29-2009, 01:21 AM
Thanks for the welcome Sandy and for sharing. I've always wanted to dance but that was after I got struck down so never really could as my illness was not (and is still not) well controlled. Good on ya for keeping up with the dance. I've gone cold turkey without practice and it doesn't feel bad at all. In fact I think the break has worked out for the better as I've just been concentrating on resting and sleeping properly and today feel the best I have in 2 weeks. Hope it continues though.

btw, I love the quote that you have at the bottom of your post!

08-29-2009, 04:19 PM
I am glad to hear you are feeling better. Sometimes resting is what's best for us. I hope you continue to feel well.
I only started dancing a year ago. Well, formally at least. I have been dealing with health issues for 16 years and decided long ago that as long as I can, I am going to do the things I long in the way that I am best able to at the time. I refuse to let being sick become the basis for "living" or lack of living my life. I did that, briefly, and was very unhappy with myself. I would rather be happy and doing the things I love in a limited manner then unhappy by not doing anything at all. For me, I often feel healthier and more "normal" when I am able to do the normal little things I have always loved like spending the day at the beach or getting a pedicure without my ankles being inflamed or sensative to the touch or just walking the dogs at the shelter where I volunteer without feeling exhausted by going around the block. There are still days when all I can do is sit on the couch or lay in bed and sleep, but those days when I am awake and able to, I try my best to live life normally again and regain a small sense of myself.

08-30-2009, 01:45 AM
That's used to be my motto in life, trying to do things that I enjoy and try to be normal. That was till depression struck. It took away all my enjoyment of things. Regardless, I try my best. Some days are worst than others.

08-30-2009, 06:03 AM
Hi Scarby!!!!!!! I would just be repeating whet the others have already told you. They ALL have given you GREAT advice! They are GOOD that way!!!!! :cute: Please just LISTEN to YOUR body and what it is TELLING YOU. I have made SO MANY adjustments and i STILL continue to do so as time goes by, BUT i CAN ONLY do what is in my control and what my body allows me to do. Discover NEW things to experience and ENJOY:yes: Believe me, there are MANY OPTIONS, you just have to find what works for YOU:cute: GOOD LUCK and WE ARE HERE FOR YOU!!!! Gentle hugs XXXXXXXXXXXXX

08-30-2009, 04:56 PM
Yea, the people here have been quite helpful in their responses. I am taking time out just to try to recuperate and consider my options. Any recommendations for fun things to do that is lupus-friendly?

08-30-2009, 05:54 PM
hi scarby,

what scares you about the vit b injection. If it is the idea of giving yourself a shot, don't worry....i too had the same fear, then i had to give shots to my daughter while she fought cancer. This gave me the confidence to try giving myself a shot, and it is no big deal. the needles are very small, and do not hurt one little bit....not at all. don't be scared, they really help with fatigue.

08-31-2009, 12:10 AM
Oh when I said I was scared it was the part about asking the doctor for it. I was told by my rheumy to take b-complex tablet. what's the difference?

08-31-2009, 05:49 AM
good morning scarby,

it is my understanding that the injection is a more concentrated dosage, it is the same shot that some drs. give when their patients are on a strict diet. My dr. has advised me not to take any complex vitamins, and to stay with the single ones. For example, instead of taking the omega 3 that you can buy on the store shelves, my dr. has me taking a prescription form because the ingredients are more controlled.

It is so amazing how the different drs. give out different advice.

09-01-2009, 04:28 PM
HI SCARBY!!!! How are you feeling? I just wanted to tell you the hobbies i have picked up or just do mORE of since Lupus. I love to bird watch(i have binoculars and all! LOL) I read books that TAKE ME AWAY from this disease and EXCITE me, LOL I watch ALOT MORE TV than EVER! I get into the SILLY reality shows (so silly that they HELP you to forget about YOUR illness!), when i can i buy some good DVD sets of GOOD shows and or GOOD movies, I pick out HEALTHY and ORGANIC SNACKS to munch on that TASTE GOOD but DONT make me FEEL BAD, I water my flowers at night LOL I am a vampire now! NO SUN FOR ME! Sometimes i just SIT and LISTEN to NATURE, its VERY SERENE:cute: I make myself some YUMMY AND EASY TO DO fruit smoothies (buy frozen fruit, that way you dont have to cut or chop!) and sometimes i just DAYDREAM, seriously, its FUN, i KNOW the things i thinkl about most likely WONT happen BUT thats the fun in doing it soemtimes, it TAKES YOU AWAY. Those are just some things i do, let me know if you want more!! LOL Hope they dont bore you! LOL MAybe some other GOOD ideas will come along!!!XXXXXXX

09-01-2009, 10:50 PM
I had to get vitamin b12 injections a few years ago and it really did help. The doctor told me whenever I need to just let her know and we can start back up. I think that will be one thing the doctor will be excited about and so should you, you will feel better :veryhappy: How are you doing today??????????? I have been thinking about you a lot and just keeping you close to my heart. Tonight and am sending you encouraging thoughts and gentle hugs to keep you going. Hang in there and we are all here for you through this process, if you need a shoulder to cry on, well, we have lots of those :hugs:

09-02-2009, 12:40 AM
mountaindreamer - thanks for that. i might casually enquire

lucky 7 - thank you for your suggestions. sounds like you're really enjoying them

danica01 -I'm starting to feel a little better today. I didn't have 'burning' arms just sticking my arms out to play today. I still don't know where I stand with the whole piano studies thing though. Am waiting to hear back from my teacher. In the mean time, I've got to study for a test next week which I'm trying not to stress about as it will probably make things worse for me.