The Lupus Forum banner
1 - 5 of 5 Posts

·
Registered
Joined
·
48 Posts
Discussion Starter · #1 ·
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. 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. Should I leave it or push myself?
 

·
Registered
Joined
·
7,800 Posts
Hi there :)

You're obviously having a very hard time of it right now. I'm just wondering one thing. Have you actually talked to the school/college/uni about these problems? There is sometimes quite a lot of help available to people who have medical conditions and difficulties studying which can mean more time to complete things and also, when absolutely necessary, the option of putting studies on hold for a while and coming back later.

Maybe you have already done all that but I'm just saying that I wouldn't be too hasty to give up your dreams. As regards your illness things can improve quite a lot from what they are now and you would most likely regret giving up at a later date.

Concerning the depression - are you being treated for it in any way? It is a very important part of the actual disease process for many people and needs treating just as any other problem does. It is hard enough to cope with a chronic disease but adding depression to the equation makes it all the more difficult.

:hug:
Katharine
 

·
Premium Member
Joined
·
7,567 Posts
Hi, I am really sorry that you are in this situation. Lupus can really get in the way of things sometimes. All I know is that 'pushing' myself always ends in a worsening of my flare. As hard as it is I have had to learn not to 'push' through it. I can understand about the concentration, and your frustration. I don't know much about piano playing though. Could you not rest before and after so you are fresh for your lesson? Sorry if you are already doing this. Maybe you could prioritise, your music is obviously very important to you, cut out unnecessary things?

Katherines advice about talking to the college is excellent. I hope you can manage to work through this.

Take care

Deb
 

·
Registered
Joined
·
7,800 Posts
Just another note - I just reread your introductory post and wanted to just say again that you are very early on treatment wise. Things may look very bleak now but they can get so so much better down the road.

If you are not seeing a continued improvement once that steroid shot wears off, I would make sure that I talked to your rheumy about possibly adding another med to the plaquenil for extra disease control. Be honest with him about just how bad things are with concrete examples of what you can't do. If I just say I'm "tired" no-one gets it. If I say that I sleep all night, get up, have breakfast and shower and then need to go back to bed again for 2 hours they actually get that that is not normal. If I say it hurts they don't get it either but if I say I can't do X, Y or Z because the pain is too bad they suddenly sit up and take notice. Using mundane, every day examples of things people take for granted helps.

:grhug:

Katharine
 

·
Registered
Joined
·
48 Posts
Discussion Starter · #5 ·
Katharine,

Thank you for giving me some insight into explaining things to the doctors. I don't see my rheumy till the end of sept. And yes, the depression is getting treated but it is proving to be a difficult one to treat. I've been on a handful of anti-d's and done the whole talk therapy thing but am still not in a very good place.

As for the uni situation, I emailed my lecturer yesterday and he said he would talk to the rest of the performance staff and see what happens. He suggested that I might be able to do it at the beginning of next year instead. But that's not set in concrete

As for now, he's been surprisingly understanding and has just told me to get some rest. I don't know what else I can cut from my life. I only do one other paper at uni and have a limited social life. If I remove that, I don't think I can stay sane.
 
1 - 5 of 5 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top