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Where to start? I'm so sick of feeling like a stranger in my own body. I miss myself. Now, I'm left with the shell of myself that can't even function. I would feel better if I even had a diagnosis, but of course that's asking too much too. I did go for bloodwork again this morning though because I can feel the flare/bad spell coming back stronger and stronger every day. I am dreading it.

2009 has been rough already and now I'm just so sick of being sick. I'm so sick of people telling me all young mothers are tired. I'm sick of having to struggle so hard to keep it together. Today, I'm not keeping it together. I have a good life, a beautiful daughter, a husband who is trying harder (recently), and family and friends who love me dearly. Yet, here I sit feeling like a total failure because I can't will my body to do what I want. I work from home and on days like today I have learned that I will almost kill myself if I stay out on the roads driving. I came home. I fell asleep. Woke up and starting panicking about money. I work on commissions and its not going as well as I'd like for a variety of reasons, some of them my symptoms. Sales don't lend themselves well to brain fog, facial recognition problems, no energy or sudden energy drains, difficulty staying awake (especially in the afternoon). I have a second enterprise that was going well, but I haven't been able to make myself stay up and work at it either. My body keeps crashing on me and I have hardly had any productive time.

I interviewed for the perfect job for me last week. I was the first candidate interviewed. I strong recommendations, great references, and am completely qualified for the position. I feel like it is where I am supposed to be, but I was just outside and panicked thinking "what if I don't get the job?" That started the thoughts of failure, bills, and the scary part is that I have bad thoughts in my head. I would NEVER take my own life, but that thought just keeps floating through the back of my head as if saying "If you didn't have Clara it would just be easier to be done with all of this." I know it is the condition causing it. I just hate it. I hate that I have some symptoms of lupus, some of fibro, but nothing fits. The rheumy is taking a wait and see approach. I am baffled as to why as the weather gets nicer I feel worse and worse. Some sort of sick twisted reverse SAD????

On top of all this my mom has cancer for the 5th time. Strong lady I know. I have faith she'll be alright, but what if she isn't? We aren't a big family and she and I are sort of all there is outside of extended family.

My husband and I are finally working on some issues that have been troubling our marriage for a while. He has lost 2 grandmothers and a cousin who was a 2nd mother to him already this year.

I'm just so low right now. I hate this sense of doom. I hate knowing it will get worse and worse. I want to feel better. I want the job in interviewed for with the awesome office of people, a lighter work schedule, flexible hours, stable pay, and the benefits of being an employee (instead of an individual contractor.) I'm open to suggestions because I'm just so sick of being sick. So sick of feeling like a failure and then thinking that it might really all be in my head. I KNOW it's not, but it's part of the sick twisted spiral downwards to think that. Just looking for some support and needed to vent I guess. I'm open to suggestions. Thanks everybody. (At least I had a good cry while typing all of that.)
 

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(((hugs))) I honestly do think it will get better for you at some point. I was at my sickest for the first 2.5 years after having my daughter too and can relate all too well with how tough and emotionally devastating it is to be so ill when you're supposed to be so happy and full of love and happiness with the start of your family.

I used to do research/statistics for a psychiatrist, and learned from her that depression tends to peak in late spring/early summer and I really thought that was just backwards from where it should hit. I have to wonder if the stress of being ill for so long, with no answers and no help forthcoming has put you to the point of being clinically depressed and needing some help?

For many with lupus, it is actually a symptom of their disease and caused by the disease itself; directly or indirectly. I can't remember your background right now, but you may want to seek out another rheumy's opinion or query your current rheumy at the next appointment if there would be any harm in at least trying a medication like Plaquenil (and considering a UCTD diagnosis to merit prescribing it) just to see if it would help.

Best wishes and take care... and many more (((hugs))) to you.
 

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I just had to write to you to say... whoa, hold on.. just reading your post and all your fears is exhausting and I just want to give you a massive hug to keep you strong. Please don't think it will go on forever like this, you are feeling so vulnerable and hurting so much it must be hard to ever think it may get better.... keep looking for the answers for yourself and your marriage and your family... you will get there but it may take a little more time. It is hard to tackle all these issues at once, even if you were 100 per cent well. Try and slow it down, deal with one thing at a time and plod through it.. whenever I have a hard time I just think of plodding!! It is easier than trying to solve everything in one hit or trying to rationalise it all. Life seems to be all about problem solving, and moving through the various stages... I lost my son to cot death and still think maybe I thought the wrong thing, or did the wrong thing etc etc, but it can drive you mad like this illness can. No doubt you are a good mother and wife but are distracted by this dreadful illness...give yourself some time and patience, for you will get there. I have also had the suicidal thoughts (first time I have admitted it) several times in my life, but recognise them as a normal reaction to life when it is out of our control........you sound like me in that you like to have some sort of order and control!! Deal with one thing at a time and if you feel it is getting too much go and see a Dr to help you through, take a deep breath and think 'I will get to the end of today'.. that is all that is required for that day. I sound like I am lecturing you, but I am concerned.. don't feel you have failed at anything, you are doing a good job. Cry as much as you need and vent as much as you need but keep on plodding on, whatever.... sending you lots of thoughts and strengthening hugs XXXXXXXX
Claire X
 

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Discussion Starter #4
Thanks. Called my mommy and cried to her. Felt a bit better. Hubby came home and wanted to make it a contest that his tiredness was worse than mine. Snowballed in to a fight pretty quickly when I said "I'm having a rough day. I'm scared and dreading the flare of symptoms I have coming." He was then unsupportive, said some stupid things, and provided me with some revisionist history of his role as a father (or lack thereof) last summer. That last fact upset me more than anything and I was thankful to have dog agility tonight and to get out of the house with kiddo. (Cause I have to have a sitter meet me there. Dad can't watch his own daughter for 2.5 hours.)

Called and vented to a friend on the way. Gotta love those friends. She was outraged too which I appreciated.

Got home and called another friend who I text and what with a lot, but was first phone conversation in a while. She was like "WHAT?!?!" when I gave her the brief history.

Strangely, I feel better knowing it's not all in my head. I have a lot going on and a husband who isn't doing much of anything to help the situation. At least I logically know I'm not crazy even if the emotions spiral out of control at times.

I will be calling my primary doctor in the AM for an appt ASAP. If nothing else I feel like I need to be on something to help with the depression right now. The bad thoughts shouldn't be there and are a red flag to get my butt to a doctor. I tried to set up counseling with the church pastor, but he doesn't do that. I NEED to track down a therapist just to keep my own sanity. At this point I don't care if hubby stays or goes. I just know I'm not going to keep doing this. If I'm going to be a single parent then so be it. If he wants to be a partner he needs to address his 30 years of issues and start changing his behaviors and attitudes. I will make sure I get help on my end too. Sadly though I'm on the fence and don't care which way it goes. Sad, but true. I'm just done with doing it all myself and being criticized the whole time. If he gets his head out of his ass he can stay. If not... oh well. Life will go on.
 

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Hi there

Im very sorry to hear about how much you are dealing with right now :hugbetter: I think you are doing absolutely the right thing, i.e. contacting your doctor and seeking out some professional support for yourself.

Hopefully with the right space and support, you will begin to care about which side of the fence you are sitting on and be in a position to make some decisions which will give you and your little one a more positive future.

Im glad you have such good friends. Make sure you keep in touch with them as they will be your rock through all this.

I just wanted to send you bucketloads of strength and fortitude for the times ahead. You sound like a very balanced and caring person and that will be your strength. Even the strongest amongst us would feel like crumbling under so many health and personal issues but you sound like you have a great deal of inner strength and hopefully you will soon be in a position to draw on that.

Much love to you
Joan:rose:
 

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Hi there and (((((((((hugs)))))))))

I'm sorry things are so terribly tough right now. I can't remember all your history but I am presuming that if you are not diagnosed, you aren't on any treatment either?

I know exactly what you mean about being told all young Mums are tired - it does get very tired hearing that over and over especially when, if you compare yourself to other young mums, you can see that you are much tireder than they are.

It sounds like a very good idea to go and see the doc. Sheer exhaustion and sometimes diseases (like lupus, fibro and so on) can have depression as a "side-effect". It is very much part of those diseases. The thing is, you can't cope with everything else if you are depressed. It makes everything so much more overwhelming and instead of being able to "act" and move forward to find solutions we can get totally submerged and just go round in circles.

I can understand your feelings concerning hubby. I went through a very bad marriage pre-diagnosis and was living with someone who, among other things, really couldn't deal with anything. I stress that that WASN'T the reason we ended up splitting up but I do understand.

What I wanted to say here was that the way you are feeling and everything you are dealing with is not going to make thinking about any of this clearly or rationally very easy. I would say you are exhausted and at the end of your tether and hubby probably is too - after all, he has been watching this go on for a while and isn't able to DO anything to fix it - that's very hard for a man and often makes them react in the opposite way to what we need.

You are right in thinking that you very much need to talk to someone about your disease and your marriage but someone objective and independent. It might even be an idea to see if both of you could go to counseling together. Friends are essential and often very well meaning but also often not at all objective. Hubby may well have issues too - so many people do - but it is also important not to lose sight of the fact that this isn't "easy" for anyone. You desperately need his support and he doesn't know how or what to do. A very frustrating and painful situation for both of you.

I hope you feel a bit better today - do get in touch with the doc - you have realised you need help and that is the first step to moving forward :)

huge hugs :grouphug2:
Katharine
 

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hello there

(((((((((((((((((((((((((((big hug))))))))))))))))))))))))))sorry to hear u having such a sad time at the mo. Things will get better they really will. Good u R brave enough to poor your thoughts out. we are all hear to support one another

Take care keep as well as u can

luv dixy x
 

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i have no idea what to say....
i feel so bad for you, i can hear the pain. and i was crying right along with you, :cry2::cry2:
the others have given you great advice.
just know that we are all here and some of us have gone thru the marital issues as well
try to be strong...it will get better, just not as soon i we want.

i keep praying for you
and crying with you ...:cry::cry::cry:
 

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Update

I gave myself permission to "slack off" and sleep as much as my body needed. Turns out it needed a lot of sleep, but I feel a bit better. Not normal or like the old me, but better than I was.

I also saw my primary doc who I trust. We talked and I started on an antidepressant to try to relieve that burden from my load. I also called and set up some therapy appointments, but unfortunately can't be seen until the end of June. Until then I will rely on friends.

So, overall I'm not as panicked, but am feeling more restless and like I am stuck in a holding pattern. Still waiting to hear about the job I interviewed for (which would be PERFECT). My current business is not doing great because half the clients I do have are carrying a balance with the company and cannot be extended more credit. Cut my commission check in half. That sucks, but I'm still hoping the other job will come though. If not, well then, I'll have to figure out what to do to carry my own weight.

Mom's surgery is next week. There is still a lot on my plate, but for some reason I am feeling better. I am trying to keep the faith. Thanks for the support.
 

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(((Palomino))))

I am happy that you have allowed yourself some rest. It gives more energy. Keep on taking those rest breaks.

I hope your new med kicks in fast for you.

Good luck in getting that new job position.
Love,
Lyn
 

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PalominoMorgan;545155 said:
I gave myself permission to "slack off" and sleep as much as my body needed. Turns out it needed a lot of sleep, but I feel a bit better. Not normal or like the old me, but better than I was.

I also saw my primary doc who I trust. We talked and I started on an antidepressant to try to relieve that burden from my load. I also called and set up some therapy appointments, but unfortunately can't be seen until the end of June. Until then I will rely on friends.

So, overall I'm not as panicked, but am feeling more restless and like I am stuck in a holding pattern. Still waiting to hear about the job I interviewed for (which would be PERFECT). My current business is not doing great because half the clients I do have are carrying a balance with the company and cannot be extended more credit. Cut my commission check in half. That sucks, but I'm still hoping the other job will come though. If not, well then, I'll have to figure out what to do to carry my own weight.

Mom's surgery is next week. There is still a lot on my plate, but for some reason I am feeling better. I am trying to keep the faith. Thanks for the support.
Hi Palomino,
Sleep makes so much difference! I read this thread from the beginning, felt very bad, until I got to the end. Very impressed with all the steps you took and your keeping the faith. Good luck, I hope you get the job and your mom does well!
Take good care,
Cynthia
 

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hi there
after reading your post I felt I just had to reply to you,first of all I understand how scared & fraustrated you feel you sound just like I was in the early days of lupus

,I have had lupus for years but it was missed,thank god I finally got a referral to a good rheumy who after seeing me for a year finally diagnosed me last november,just like you in the early years I had to cope with 2 young kids & my family & husband just didnt understand & I think some of them secretly just thought I was attention seeking.

I used to get so worked up & angry & felt like I was in prison in my own body no matter how much I willed it to it just wouldnt work! as well as getting terrible depression,but you know what? to cut a long story short this illness has taught me that I cant control everything & that I have had to learn to let go of a lot of things & simplify my life,

I dont know your circumstances but the worry of finding another job right now is probably about the last thing you need to be coping with,I eventually gave up work because the stress of worrying everytime I was ill & couldnt go for weeks on end was slowly destroying me & it was hard for us with just my husband working 2 kids & a mortgage but we got through it,we started to talk to each other rather than just shout & now 10 years later my illness has brought us closer than ever because we have been through so much together & these days my husband is my rock,

I learned that if I couldnt clean my house every day so what? as long as the children had clean clothes & were fed properly during the bad times people would have to take me as they found me & if they didnt like it then that was their problem not mine,

I promise you that in time it will get better though I know it does,nt seem like it now & like the rest of us who cope with this horrible illness you are a fighter & a survivor,all I can say is cut as much stress out of your life as you can,learn to lower your expectations of yourself & dont beat yourself up when you are too ill to do what you want,

try to rest as much as you can while you feel really poorly,because I found out the hard way that trying to ignore it & just keep going only makes it worse & takes longer to get over,if you really cant talk to your hubby/family try a counciller I had cognitive therapy at my doctors surgery & it really helped me a lot to let go of whats not important & to learn to take care of myself better & to accept myself for who I am today rather than who I used to be before I was ill,because I dont know about anybody else but I learned that once I had accepted things as they were I found it an awful lot easier to cope,
you take care you are in my thoughts x
 

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Oh my gosh, I'm so glad to hear you're a bit better, but here's a
 

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Thanks guys. Today is a BLAH day. I am looking forward to running away next week to mom's house for a few days, even if it is for her surgery. I need a break from my husband and maybe he'll think about some things while I'm gone. Then again, maybe not. At least I won't be here for a few days. Mom's surgery is on Wednesday the 20th if anybody wants to send some extra prayers or white light her way that day.
 

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Update

Just some quick updates. Mom's hospital stay was memorable. Two weeks in the ICU, an apparent death nurse, and another week in a regular room. Her 1 week stay turned in to 3 and I ended up being there almost the whole time to advocate for her.

My hubby is trying to help more and that is a big relief.

Heard about the "perfect" job and apparently I wasn't perfect for them. Got notice they hired another candidate on the 4th of July. In the mean time I interviewed and got a 16 hour a week job as a therapeutic riding instructor at a local program. I start the 27th.

My main job (self employed) is not going as well as I'd like still. I have been struggling to focus and have the energy lately. Brain fog, fatigue, and some other lovely symptoms still persisting and getting worse as the weather gets nicer. (Just like last summer.)

I had another appt with rheumy yesterday and her PA basically said that she doesn't think it's an inflammatory condition like lupus or RA because they prescribed steroids a few months ago and told me I'd feel like a million bucks. They helped a little, but I didn't feel as good as they made it sound.

I also had an episode with my eyes a few weeks ago. Opthamologist suggest a neuro based on my other symptoms and the bluriness/double vision. Between that and the rheumy basically saying "we can try Lyrica for fibro if you want to see if it helps" I am going in to see my regular doc today.

When I had a few falls early on my hubby made a comment "hope it's not MS. That's how they figured out when Tammy's started." In the back of my mind that has always been there. Lately on top of the fatigue and other symptoms my muscles have been very weak (hard to even stand up off the floor), very tight (feel like they're about to charlie horse any second), and I wrote down all my other weird symptoms for my doc to go over today; hard to read out loud (even baby books to my daughter), losing words (mid sentence just can't think of a simple word and then struggle to express it another way). I think it's time to see a neuro and maybe have an MRI done.

As for mom... her hospital stay led to some revelations (in her words) and she doesn't want to see her granddaughter once a month. We are looking in to options to buy a bigger house or add on to our existing home so my mom can join our household. (Hubby has an inheirtance coming from his grandmother and my mom will chip in as well to make a bigger house affordable for us.) Mom's chest tube was in for 7 weeks but finally came out. Her radiation is done and she is slowly healing. She is a bit frustrated she isn't bouncing back as quickly this time but she went thru alot.

Just thought I'd give an update since so many of you were so kind to respond to my original post.
 

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Hello again and nice to hear from you :)

I'm glad to hear that your Mum's surgery is over even if it didn't go as smoothly as you had hoped.

I agree that it sounds very much like it is time you saw a neuro, even if only to eliminate things.

Keep us posted on how you get on when you do get to see a neuro :)

Katharine
 

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Good luck with your new job. I hope you really enjoy it.

Glad to hear your mom is healing. Don't forget she is a little older this time around. None of us bounce back the same as we age.

Take care,
Lazylegs
 

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Quick update after meeting with my PCP today. So glad to have a person who is in your corner and knows your history. I feel like a hypochondriac running from doctor to doctor, but was assured that of all the patients she has I am the last person she would think that of.

I am glad I wrote down all my symptoms. Apparently not everybody was getting the picture because she asked "when did the brain fog start?" I got to do some basic neuro tests that I passed except for standing with feet together, arms out (like a cross), and close your eyes. I kept listing to the right pretty hard. Doc said "enough. this is enough." You're going for an MRI and I agree you should see a neurologist.

Is it wrong to hope they find something? I just want an answer. So in the past 36 hours I've given about 10 vials of blood for testing and seen two different doctors. Hopefully we'll get to the bottom of this and I won't have to feel like a stranger in my own body.
 

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Hello again,

I don't think it is "wrong" to hope they find something. We have all felt that way at one point or another. Of course, if we had no symptoms and were feeling fighting fit, it would be weird to want people to find something wrong but you don't feel fighting fit so I think wanting answers and explanation is really very sane. When we know what we're dealing with and don't feel like we're going crazy, it is all so much easier!

Katharine
 

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Hi, it was nice to hear your update. I am pleased that your mom is doing well. I hope you manage to find an answer for your symptoms. Let us know how you get on.

Take care

Deb
 
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