Having a Bad Day

[Rhonda]

     I am just whining - so forgive me.  I am just having a really bad day and wonder how in the world anyone can feel so bad and so tired for so long!  I sleep more than I am awake and I still feel like I could sleep all day long.  I ache from head to toe - between the SJS and the fibromyalgia, I am miserable. 
     Today one of my coworkers commented on how tired she was- and I was shocked to find myself thinking- that she has NO idea what tired is!!!  I wish I had the energy to do half the things she was saying makes her so tired.
     I just feel like the SJS and fibro have taken control of my body and I am not enjoying not being in control of my own body.  I don't know how in the world I am going to be able to hold down my current job- and I'm frustrated because I have only 12 more years till I can retire from there.  At this rate, I am not going to be able to work until age 62.  I have a very good job and really can't afford to leave it, but then again, it is a very stressful job and I have a one hour commute each way to/from work daily.  I am exhausted before I even get there!
     I just hung up the phone from talking to my 24 yr old daughter who stated "Wow Mom, you aren't in a very good mood today."  I feel bad that my family has to see how bad I feel, but I don't have the energy to hide it today.
     My husband is very understanding and tries to help me out, but he doesn't understand why I sleep so much, or why I am not interested in anything that takes any energy.  He tries to understand, but I would have a hard time understanding anyone being as tired as I feel - if it wasn't me!
   I feel like a walking pharmacy and I'm so frustrated that I feel so bad.  I just wish there was some treatment to get rid of the SJS and fibro!  How grand that would be. 
  I am sorry- I just needed to whine a bit.  I'll be better after another long sleep, I hope.

Take care all.  Thanks for listening!

[Dolly Dimples]

  Nothing to forgive Rhonda,

                                         You haven't done anything wrong by being ill!   None of us are super human, and each of us here knows exactly how you feel,
  even people like myself who are not as ill as some here.  We all have our down days with our different symptoms.. 

   I have been so down lately because of the exreme body temperature's, I get hot & cold at the same time , tho' I dont have a cold!
  Of an evening I can't sit comfortable in my own home without all doors & windows closed, and some sort of heating going.. I am  in tears of frustration at times and no one seems to grasp just how low I get over this! as no   one else feels cold ..
I'm getting paranoid about going anywhere socially, as I can't stand any sort of AC even in the car ,open windows , or just an unheated room...  This along with extreme dryness all over is slowly  doing my head in, so I join with you in whining tonight, and send cyber hugs if nothing else to comfort you.  Best wishes Dolly

[TerriJ]

Rhonda,

I am really sorry about the day you are having.  I know if my husband and I didn't have our own business I wouldn't be able to hold down a full time job.  Have you ever gotten anything to help with the fatigue?  I take Provigil and it has helped a lot.

Terri

[Rhonda]

Thanks Dolly- cyber hugs to you too.  It's nice to know we aren't alone in this.  Take care. God Bless.

[Rhonda]

Thanks Terri.  No, I haven't tried anything for the fatigue- but I am on so much medicine now I could start my own pharmacy!  Plaquenil, Cymbalta, Protonix, Relafen, Lotrel, Vitamin B12 and soon some meds for my Macro Degeneration.  I will have to ask my doctor about something for the fatigue. It is nearly unbearable. 

I am so afraid I will not be able to continue working and we just cannot afford for me to not work.  It's hard to keep the stress levels down with so much on my mind.


There- I promise- no more whining... it's just really a bad day.   

[seren]

Oh Rhonda,

I really feel for you, I think your amazing to be able to hold down a full-time job that added to the long commute... well I simply could not do it!!  I am a social worker and sadly have been unable to work at all since my graduation over 3yrs ago (altho - this has been exaccerbated by my 18yr old son's health probs - which keeps him awake for 24-36hr stints all the time) . Altho I do hope to work maybe part--time at some stage??

I thank God for my husband too altho he doesn't quite get how this condition really affects me. I can no longer hide just how unwell and tired I feel alot of the time but find myself trying to all the same....at 42 I think what the heck is going on...will I ever be well?

My daughter (twin to my son) said to me today "mum will you always be this tired and unwell?" and I said to her I certainly hope not..my plan is to get my TSH level into range (altho this is proving difficult) lose some weight and maybe then I'll feel better? but deep down I am thinking I hope and pray that this is the case!!

I think as you are concerned about whether you can continue to work and the financial implications of this,  I would say, your health is more important...maybe you could go part-time or even get another part-time job....usually there are always ways we can make savings and more often than not something turns up that enables us to manage financially when a crisis comes along!

So take heart and I hope you manage to get things sorted

God bless you
Paula X                  

[Redetha1]

I can understand just how you feel.  I used to have a lot of energy and one day poof it was gone.  I went to work and people were moving things for the end of the school year.  I tried to help---big mistake.  Tonight I am paying the price.  I am sending you one big HUG.  HUGS, Redetha

[DragonflyC]

I understand completely.  Being sick is so frustrating. 

My husband has put me on a strict schedule that includes putting work away by 10 p.m. (I'm a high school English teacher, and I put in about ten hours in the building and two or three at home most days), turning off the TV, having a cup of tea with him, and then relaxing until I fall asleep.  It's not giving me the same social life I once enjoyed, but I definitely feel a little better. 

[TerriJ]

Dragonfly,

I think some kind of a schedule sounds wonderful.  Tonight I am working on a deadline for our fiscal year end and will be up late.  I never get as much sleep as I need.  If I stay on a regular schedule I feel better. 

Rhonda, still thinking of you hon, and knowing how tough this is.

Terri

[missyb]

Rhonda, You have a very difficult schedule. You are human of course, and we are all entitled to a bad day but keep in mind we can't judge other's levels of exhaustion in the same way we don't want others judging ours, right? If you friend says she is tired, take her at her word just like you want others to take you, and don't compare yourself. 
Also, give your diet a good hard look, since you are so busy, it  must be very difficult to get the right nutrition. are you eating alot of fast food,processed food,  junk food, or sodas, starbuck's mocha frappcrappachinos or other things that pick you up then drop you hard? I was guilty of that, then I kept wondering why I felt so terrible. If you are too, it may not be only this illness that is bringing you down.
Are you taking a quick stroll  each day even just getting outside to the corner? You must have a little sunshine and fresh air. Either get up a few nimutes early, do it at lunch or at night.
I certainly am aware how difficult it is to be accountable for all these things on TOP of everything else, yet if we do NOT, we are royally screwed and can't do anything for anyone.. 

[dbab]

Rhonda,  Wow you sound almost like me.  I also have an hour each way commute (sometimes 1 1/2 hours).  Now I've been taking my husband to work and picking him up also (he ruptured his right achilles) and he's out of the way so now its more like 2 hour commute each way.  It's enough to pull your hair out. *Plus there's only so much I can take of him at one time. 

It's so frustrating when people don't understand how you feel.  Every time I mention that I have a pain or something to my husband, he immediately starts talking about how bad he feels too.  I'm trying to get him to go to the doctor but I don't know if he's  trying to divert or if he is really in bad pain.  He doesn't seem to worry about me much so I keep a lot to myself.  It really builds up.  It's good that you have a great line of communication about this with your husband.  The only person I can really talk to about it is my mom but I hate to do that to her because she worries so much.

[Patze]

Hi Rhonda,

Like some of the others, my commute is an hour or more each way only when the traffic is good, and I can understand your frustration and sheer exhaustion from that alone.  Then the stresses at the office must be unbelievable, and I feel so bad for you.  My office can get nutty really fast and by 2:00 pm, I'm ready to fall a sleep at the desk (and I have a time or two over the years).

I felt the same way as you do until I changed neuro's again (for the third time).  This one was a lot more comprehensive, she did the blood work that found that my B-12 level as very low, as well as my Folic Acid level.  She also prescribed Provigil, and it helped a lot - made me nauseas sometimes, so between all of this, my exhaustion level is not as bad as before and my memory is not totally shot anymore (not nearly as good as before, but not as bad either).

Have you seen your neuro lately?  Or can you have your primary check your vitamin levels, and maybe prescribe Provigil?  It might be worth it to try it and see how it works for you.  Oh, watch the cost though, some insurance companies won't cover it because of the expense - the neuro's office had to get permission to prescribe it for me.

Hang in there Rhonda, and know we're here for you.

Take care and keep us updated, okay?

Patze

[jonnell]

I hope you guys all feel better quickly,  Hugs and Kissess from Jenna and I

[Rhonda]

Thanks to all of you.  Knowing I have all of you who understand makes me feel better in itself!  I am trying to walk a little each day- in fact at work, I have to walk all over the hospital campus- so I average walking about 5000 +/- steps a day.  A little tiring, but I am trying.  I try to take the stairs when i am feeling like it - which is seldom- but I am trying.

I am trying to understand that everyone has their problems too... so I feel bad about thinking my friend didn't know what tired is.  I don't normally have such selfish thoughts, but yesterday I did.

I have no appointment with a neuro- I am seeing a Rheumatologist, an Opthalmologist, Retina Specialist- and my Primary Care doctor is Internal Medicine.  I actually see her on Monday, and I have a list of symptoms to tell her about!  She is actually the one who found the autorimmune disease to begin with- although she thought it was Lupus.   She follows my hypertension, but I am going to mention the extreme fatigue and ask for some bloodwork to test that.  I have never been so tired in my entire life!

Thanks again to everyone- I am in a better mood today.  Still very tired, but feeling much better emotionally.  Thanks to all of you!!!! 

Hugs to all my SJS Buddies!!