Wednesday, June 30, 2010

Sometimes Your Just to Tired to Care

I'm sure everyone has been there, the point where your brain just shuts down and stops caring as much. I find it almost peaceful to be honest. I am exhausted, at work and just truly care about 1/2 as much as before. I also suspect that there is some background conversations going on about me at work - but am choosing to ignore and just don't care (trust me this place is full of tongue waggers so it doesn't surprise me, previously I would have been really bothered by it being directed at me). I'm letting my husband deal with this now how he has too, letting him believe what he wants to, and don't have the energy to fight about anything anymore.

Don't mistake this for being a push-over, it's much different. I will stand up for myself if necessary, I'm just mentally in a better space where everything just doesn't bother me as much.

So the one advantage to CFS that I have, the nice exhausted buffer it puts around your brain :-)

Tuesday, June 29, 2010

Can't Keep My Eyes Open

Wow, today is rough, I caught myself barely able to keep my eyes open on the drive in (BAD - I know).

Thanks for all your comments, as always they mean so much to me.

I do think it's obvious I have CFS, but seeing this infectious disease control doc will accomplish several things (1) make my boss happy, (2) make sure nothing else is going on (3) make sure nothing else is complicating my CFS.

However, I have to admit that I feel a bit lead around at the moment. It seems that now I'm pushing myself because my boss is being so nice and getting me in to see another doctor and because he gave me last week off. I asked my immediate supervisor yesterday (not the same boss) - to reduce my pay to what I'm actually working so that I can stop burning up all my vacation and sick time to make up my hours and was told "that's not necessary at this point". I tried to explain that I am very afraid that I won't have any "time" left if I need an extended break or even if I just crash and need a week off again - apparently it's "still not necessary at this point".

My husband is flying high on the thought that this new doctor is going to find out what is going on with me and be able to "fix" me - this all feels like unfortunately a recipe for disaster.

All I know is that I can't do this much longer and we all know it (at least all of us here - LOL), I can't keep pushing, I need to stop.

I'm taking it one day at a time, hopefully with my eyes open at least some of the time.

Monday, June 28, 2010

Alot to Catch Up On

On Monday afternoon my "big" boss sent me home for the rest of the week. I literally spent the entire time (Tues - Sun) doing extremely minimal activity and mainly rotating between the couch and the bed. I do not feel better.

I am back at work today, but not sure how it's going to go. I agree that at this point I should probably just go out of work and forget about working from home but I am trying to work with my employer also. I worked from home 1/2 a day on Tuesday and it was horrible - not restful at all - and a mistake.

My "big" boss (not my immediate supervisor) is a retired physician from a major university hospital. He is arranging for me to see an infectious disease specialist to "make sure" there is nothing else going on.

I don't think he believes in CFS to be honest, but he can see that I am obviously sick. Either this will be a life learning experience for him, or they will find something else wrong.

Meanwhile, I feel like I should try to to work with them as much as possible - although, I realize that this was not what I asked for in my message to him, but I'm taking a wait and see approach - FOR THE MOMENT.

I'm discouraged that I feel no better after resting all last week, if I'm 100% honest, I'm still getting worse. I am actually quite sick at this point. The realization of this is really hard to ignore.

My current doc is now out of the country (in the UK) for an entire month, so I'm a bit "stuck" anyway I suppose.............

I just wish I would stabilize at least............

Monday, June 21, 2010

Then Things Got Worse

Well, the motorcycle has been put off for awhile I think - however, the conversation opened Pandora's Box and I am feeling beyond defeated, exasperated, and lost.

My husband wants to know what my "plan" is. He wants to know if I take this month off, and then go back to work after and the same thing happens and I just going to "give up" or am I going to try to "push through". He asked if I was "throwing in the towel". He says he has a right to know "what he is looking at", is it a month, 6 months a year - or what. He doesn't want to hear that I have no way of knowing, he doesn't want to hear assume for the worst and hope for the best, he doesn't want to see my tears. He also, doesn't see what the point is in going in to see my doctor with me, when he's only going to say that he can't say how long I will need either.

As you can imagine, I am hurt (and of course he says I take everything too "literal"). How would you take it if your "partner", the one that is supposed to "stand by you", asked if you were giving up, throwing in the towel, or were going to push through. I tried to explain that I don't have "choices" - he simply doesn't get it and I don't think he wants too.

I'm angry also, I supported us when he was in a car wreck way back when our children were small, he was out of work for 3 months, I figured it out, told him not to worry, and we never knew in advance how long he would be out. Or how about that time he lost his job (by his fault) two months before Christmas one year and couldn't find another job until January? Yep, same thing, we would figure it out, he was told not to worry, and not only did I figure out how to pay the bills, but also how to provide Christmas for our children. I apparently do not get the same.

This morning, he called me to tell me it was "time to get up and join the world again". You can imagine how that made me feel as well.

I'm tired, I'm stressed, I feel like total crap, I am alone, I feel that it would be "easier" if I was doing this on my own. I can't take it any longer.

So my "plan" (per him I guess or at my moment of defeat one) is to ask my big boss about working from home and if he doesn't say yes then we go from there.

I don't know if I should still try for the doc appt. - I feel that it's only wasting my doctor's time, my money, and that perhaps we could use that time instead to fill out forms (since I doubt highly I am going to be able to work from home - I've already been told no - once).

Correct me if you think I'm wrong.

Meanwhile, not a great way to recoup from one week and prepare for the rest. I wasn't depressed before, but I certainly am now.

Friday, June 18, 2010

Warning - Gripe Session

I seriously wonder what planet I live on somedays. Today is obviously one of them. My husband has just informed me he wants to buy a used motorcycle - at first I thought it was a joke. Once I realized it wasn't, I told him to do what he felt was best. Now, he wants to know why I have an attitude!!!!! I'm not his mother, and I'm not going to tell him no (nor should I have to). I am beyond fed up at the moment.

My CFS specialist is concerned about my swollen lymph nodes and has now offered to make an appt. over the weekend to accomodate my husband because he feels that I may be delaying taking time off due to lack of support. How ironic that all of this happened on the same day.

I am beyond fed up at this point. It's one thing to continue to work to pay the current bills - it's another to think it's ok to add more unneeded bills to the pile. Unthoughtful is an understatement - selfish is more appropriate.

Thursday, June 17, 2010

Support Means So Much

Thank you everyone for all of your comments and support. Truly it is a breathe of fresh air to communicate with people that get it and I can tell in your messages that you truly care and are trying to help me from falling far - it really means so much more than you know.

I also, got a pleasant surprise from my uncle who is apparently very knowledgeable about CFS/ME so it's been nice to have an additional family member "get it".

I went to bed at 8pm last night - and slept for 12 hours - it seems like I could sleep for weeks right now to be honest. I'm at work today - but came in late (had to get more bloodwork drawn) and am not staying all day. I'm going to tell them effective Monday to start paying me hourly and stop burning up all of my paid time off trying to make up my hours. Step #1 in my eyes. I am definately being more realistic now after this last "episode" that has now lasted several weeks and appears to still be getting worse (but I'm surviving at least).

For the most part my family has been understanding about no commitments - my daughter was a bit disappointed about something she wanted to do this weekend but quickly realized how it was out of my hands (have I mentioned lately how grateful I am for my adult children and their support and understanding), my mom has been wonderful about it and is totally supporting my decisions (she would also like to see me take time off work), but there are still some in my family that just don't get it and I'm accepting that they just may not get it. This is the first time, I can truly say I feel like I'm putting myself first.

It's still difficult with my husband - but I can't change him or the situation - so my newest goal is to stop apologizing and making excuses for what I can't do - it's ridiculous and I know it.

Wednesday, June 16, 2010

One day at a time

I only know for the moment I have to take this one day at a time. I left early on Monday and took yesterday off (called in sick). I literally stayed in bed all day yesterday and slept a TOTAL of 14 hours.

I am back at work today - but taking it VERY easy and am not making any promises regarding tomorrow.

I have put the word out to the company that helps us manage our employee benefits (it helps when you are the plan administrator and have a bit of an "in") to see if they can find out what U*N*U*M would be looking for to process a claim. (Again, any and all personal experiences are still welcome.)

My husband still wants me to find out for sure, if I can work from home instead of going out. I still have not been able to discuss this with my "big" boss and to be honest am not sure that this is the "break" my doctor has indicated that I need. I'm just not sure if I should pursue that avenue or not at this point. It would be ideal (I believe) to take a month off - and then if that has helped ANY to try to slide back into work by working from home but feel that may be asking for too much in my employment environment. With the exception of my "big" boss - the mentality around here is that once you go out on medical leave you already have one foot out the door. Also, in other cases - they would not accept employees returning back to work if they could not do the job as they had before.

One day at a time, it may not be the healthiest answer for the moment but it's better than continuing to simply push myself along I suppose.

I'm also not accepting or committing to ANY outside work activities - not for family and not for friends.

Monday, June 14, 2010

Going Over the Edge

I can feel it, I know it's there, I know it's just around the corner.

I'm going over the edge.

I feel almost desperate. Desperate to speak with the "big" boss so I can know if working from home is an option. Desperately thinking that may not be enough. Desperate to find out anything I can about my chances of getting short term disability. Desperately thinking it may turn into longer.

I am beyond exhausted, I am not well at all, sometimes I feel as if I'm dying (no I'm not suicidal - no worries there). Each moment is harder than the last.

I can't do this much longer, my bed is calling me, my body is yelling at me, my time is coming.

I am definately going over the edge.

Monday Again

This weekend was horrible. I have dragged back in to work today (I know.......I know.........). The heat index here is horrible right now and I passed out from it on Saturday. I had only gone outside very briefly and the last thing I remember was my daughter telling me I looked really white. Next thing I know I'm in the bed. My daughter wanted to call an ambulance but I refused (just more bills, for them to tell me to stay out of the heat was my theory).

I look horrid today, pale, my throat is hoarse, my cough is bad and I'm barely functional. This is a day where I am counted for being present but not sure how much productivity I will be able to accomplish.

I have decided to try to talk to my "big" boss about the possibility of working from home some (as in - working from home / more than in the office). My immediate supervisor had said it was not an option but I'm going over his head to see if I can change that. I'm going to have to be honest and tell him that this is the only way I can continue to work right now and hope for the best. Now, I just have to nail him down.

I would still appreciate any guidance for private disability insurance - I'm not sure that this option is going to work (for me or the company).

Also, thanks so much for all of the visitors and comments so far - I truly appreciate you sharing with me.

Friday, June 11, 2010

Update on Work & Health Situation

FOR NOW, I'm still at work - but the days are counting down. My doctor wants me to take at least one month off to rest and "treat by body as if I had mono". He has informed me that FOR NOW he is leaving the decision up to me, but if I decline much further he will have to insist.

When I went to the doctor on Wednesday, I was running a low grade fever, had VERY swollen and tender lymph nodes and am now down to 103 pounds. As a reminder I weighed about 122 in January but even more alarming is that I weighed 119 March 1.
I am wearing down - my body is not handling this well at all (which everyone I know is shaking their head in understanding).

I took yesterday off and can't even tell, I had to get a ride into work today because I was afraid to drive and doubt I will be here all day.

Still alot of family misunderstanding going on right now. My husband is slowly understanding but still believes if I put on weight I would be better. I am seeing a nutrionist soon but tried to tell him that is a concern but not a "cure". (My doctor also told me that if I get below 100 pounds I'm risking being hospitalized for my weight). There is concern all around about the financial impact of this and I am concerned about if I can't return to work after one month (which we all know is a possibility).

I know the right thing is to take off work and put my health first. I'm a planner (which I'm sure is known by now), and this is not settling well in my mind at all.

My "fabulous" insurance company is well known for delaying and refusing claims for CFS - since it's considered a "self-reporting syndrome" and I'm afraid. I will HAVE to have that income or things will be going badly fast at home. Which is why I am asking for advice because I truly don't know what will test etc could "help" my case.

My doctor told me to call him WHEN (not if) I am ready and he is happy to help me with all the paperwork.

I had a dream the other night that I couldn't get out of bed and my husband was trying to get me to go to the hospital - I'm afraid it's a sign.

Wednesday, June 9, 2010

Experience with Private Disability Coverage

For anyone reading in the US, do you have any experience or advice for proving a claim for CFS under private disability coverage for short term disability coverage (at least for the moment)? Specifically, unfortunately we are covered under the famous company u*n*u*m.

My doctor is very willing to assist with all paperwork and forms, I do have swollen lymph nodes (especially right now), but don't really have any other "markers" - at least that I'm aware of (which granted is limited knowledge).

I guess everyone can tell how my doc appointment went............I will follow up more tomorrow. Right now, I can't get past the anxiety that I might get denied.

Alot On My Mind

I have quite alot on my mind right now (as I'm sure you can imagine). I am seriously thinking about the job situation and still have some unresolved issues at home. Hopefully, one part of those worries will be resolved tomorrow when I take my daughter to see a specialist tomorrow regarding some health issues she's been having.

My cough is horrible today but fortunately I see my doc later this morning, I am going to inquire about Vitamin B injections again - and to see if I can go back on the anti-nausea med. I am now down to 103 pounds which makes my total weight loss at around 20 pounds at this point, the nausea is certainly not helping.

Thank you again to both Cusp and Lee Lee for your comments yesterday. I hope I can learn from your experiences and make the best decision possible. Thank you also, for helping me feel a bit less alone :-)

So yes, I have quite a bit on my mind right baby step at a time, I suppose.

Tuesday, June 8, 2010

Pushing Yourself

I know you aren't supposed to push yourself beyond your limits with CFS, I also know that in the "early" stages this is possibly even more important. However, so many of us do it (myself included) - so why?

I've done alot of reflecting regarding this - and for me personally it is a combination of reasons:
1. Non-support from family members (especially spouse)
2. The feeling that you might be on borrowed time (for lack of a better term), and therefore you need to do x,y and z if you can (in my case - pay down debts and save money).
3. Others opinions that if you drop out of work than you might actually get worse (yes, even my doc has mentioned this.........)
4. Here is the big one (and please don't slam me for saying it): The feeling that the only way you can STOP is when your body forces you into it.
(In other words, I don't have the "right" to stop working as long as I am functional - even if that functional level is greatly diminshed. That I don't feel my disability level is high enough to justify taking time off, etc.)

Now, I know these are issues (in ways of thinking, feelings of self-worth etc.) and aren't necessarily rational but I have a feeling that at some point more people than myself have felt this way (at least I hope so - LOL).

Here's the deal: If I were completely honest - I don't even WANT to work anymore (shudder I said it....), I feel that I am wasting valuable energy on a job that is exhausting, stressful, and that my mind no longer cares as much about. I used to be a highly motivated employee, who enjoyed coming into work, who thrived on the reality that I was doing the job of what should be multiple positions, and that people needed me and respected me. CFIDS took that from me, possibly when it took my energy.

So I stand on the ledge - trying to balance my life now - based on standards and ways of thinking from pre-illness and the reality of my health post-illness.

Even though I hear all of you out there (who I am SO grateful for) telling me all of these things I know are true - there is always that BUT in my mind...........

So honestly, if you feel comfortable sharing, what hurdles did you have to overcome (mentally, financially or otherwise) to make the decision to leave work? Or did it catch up with you in the end - just as I'm begining to see it will most likely do with me as well?

Monday, June 7, 2010

Took Some Time Off

I took a few days off last week and honestly it made coming into work today much harder. I've already been hit with stress and conflict this morning and it's VERY early in the day.

I overdid it a bit on Saturday and the cough and low grade fever has returned. My dad made the comment that I shouldn't be at work with a fever - this almost makes me laugh, if only I could take off every day I have a low grade fever life would be wonderful - but that would be the disability route I'm afraid.

I haven't written that option off, it still rides around in the back of my mind. I may have another alternative though, it might be possible for me to work from home more often but I need to wait it out a bit (if my body allows).

Honestly, some days I feel as if I'm waiting for my body to collapse, for my brain to give in, for the fall that I can feel coming. Then my body fools me and there is the rare day where I think I'm getting better, I feel a bit better, only to be reminded shortly it's not so. I suppose this is the wonder that is CFS.

Wednesday, June 2, 2010

False Hope

A comment from my previous post has me doing some self-reflecting. I think it's very possible that I've been hoping against everything else that something else is going on other than CFIDS. The Lupus thought process fed that sense of false hope and I really began to think that something else could be going on.

It makes me sad that I feel this way, I apologize to all those that are trying to get this more recognized and accepted for hoping something else was going on. Could it be the disbelief, the lack of support, the lack of good medical options that caused me to want something else? Probably a combination of all.

So now I must come back to acceptance. I have CFIDS (CFS/ME) and it's time to learn how to manage it - AGAIN. There is no time for false hope, there is only time to find away to make my life as full as possible and to help my body stay as healthy as possible.

When my husband says I can't see the positive - I disagree. I think it's just my form of acceptance. I do believe that every day doesn't have to feel as badly as today, I do believe that it's possible for me to improve. However, I don't believe I will ever have a drink again, I don't believe I will ever carelessly not listen to my body signals, I do believe I will always have to watch my energy levels. Is that really negative?

I see my doc again next week. We are going to look at supplements and alternative therapies - since I obviously am so med sensitive. This is a route I am more comfortable with, and I believe this route will teach me how to LISTEN to my body more.

Tuesday, June 1, 2010


My ANA test came back negative and the Sed Rate test came back low. I should be relieved and happy - at least that's what my doctor and husband think.

Instead I feel uneasy, and unsure of what's going on with my body AGAIN. Don't get me wrong, I don't want a diagnosis of Lupus, heck I don't want any new diagnosis. However, I also know I continue to decline, continue to have odd symptoms (that could or could not be from CFS), and I'm (in my heart) not sure that there isn't something else going on.

So now, I'm at a crossroad so to speak. Do I just "give up" somewhat and accept the diagnosis of CFS and stop these medical games or do I seek a second opinion to have more bloodwork drawn to rule out other things (I don't even know what at this point).

Part of me feels like maybe I'm grasping at straws. Meanwhile, my husband feels that I can't see the positive in anything - maybe I can't right now.

To recap - current symptoms include (does anyone else notice this list growing/changing):
Extreme Fatigue (unrelieved by rest)
Muscle Aches (daily - pain level has increased throughout the last month)
Joint Pain (especially knees and hips)
Burning Feet
Burning Face
Face, neck and chest rash of unknown cause (the face is classic of a butterfly shape - however the rash is very light - it is sun-sensitive)
Hot and Cold Spells
Dizziness and/or light-headness
Nausea (sometimes severe)
Weight Loss (Still losing - currently at 18 pounds total)
General feeling of being unwell (always as if I'm coming down with something)
Sore Throat
Hoarse Throat (gets worse the more I talk or the more fatigued I get)
Weak legs (especially when I have overdone it)
Concentration Issues
Word "lost" issues
Increased IC symptoms (mainly pain)