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Comes and Goes and Comes and Goes and Comes


DSM3KIDZ
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I have mentioned this in the past but I can't handle the rollercoaster this illness brings. Besides from this site I have never heard of people who are sick all the time. I have a friend with severe liver diease and she only gets sick about once a year and another friend who has a chronic illness but is only sick once or twice a year. I guess my point being.............why do we have to suffer soooo much?

For the past year and 1/2 the longest I have gone without feeling too horrible is 5 weeks (once) otherwise I get sick every couple weeks and still feel crappy inbetween. And it takes about two weeks to a month start to feel tolerable again. So basically I'm always sick.

It's really hard to have friendships or consistency in my life or with parenting when I wax and wane sooo much. I can't tolerate most meds so my quality of life can't improve that way.

When I get sick I can't really push myself, I try but the nausea is debilitating, the fatigue is sooo bad I feel drunk and sometimes even getting up to go to the bathroom seems too much (but I do it.)

I have no obvious triggers so I can't prevent these episodes and it's taking a tole on my family. I worry that my husband while supportive now will eventually have had it and leave. When I first got sick my daughter was 5-1/2 and busy with princess stuff. Now that she is 7 , I see dissappointment in her eyes when she looks at me.

I know this is beyond my control but I feel like I have failed myself and my family. I'm not depressed. I've been handling my emotions great lately I'm just really dissappointed in life right now. I feel this nightmare has to have an ending.

I guess I need you guys to tell me even though we are miles away I'm not alone in this. Do you guys get sick every couple of weeks and have it last for a few weeks? Shouldn't that be a clue for my doctor so she can fix whatever is wrong with me during these bad episodes? Does anyone know what causes me to be walking along with my head up than........BAM I hit a brick wall AGAIN!

Sorry for rambling but with all the advances in medicine why can't they figure out how to calm the nervous system?

Dayna

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You are not alone. I am feeling frustrated lately myself. For so long I just tried to ignore it, and even pretend there was nothing wrong with me...but then the things people would say to me (lazy, dumb, sick again? etc. etc.) were just too much too.

Sometimes I feel like if I get another review that says "work productivity is cyclical...needs to improve" I will scream.

The bad sick lasts a week, then there is the mediocre sick which lasts for weeks. Then I will think I am fine for a month then I can tell I am going down, then Blammo... Especially when it is just holding your urine for 3 min, to get off a phone call that causes the blammo.... Such a silly little thing?! It is maddening, and scary and frustrating and you are not alone.

My theory about medicine is that the science ends with the text book., the rest is art and not very good art sometimes at that.

My daughter (now almost 5) lmitates me sometimes in ways I dont like. She picked up the phrase "stupid lazy dog" in preschool (we have sinced pulled her out) and I heard that one as well. And I hate it when I have to lie in bed and my husband comes in and sits down and wants to know why I am not up and at work, or looks disappointed. Or my daughters disapointment when I say "no I can't go on a hike today." When can I ever! Sometimes I do, just so I dont see the look, but then I pay...Oh the baggage. lol

I wish there was a cure too.

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I think MANY of us here experience the ebbs and flows of being sick/symptomatic. Just when you think you've hit a good spell and that all might be okay with the world for a while, BAM, like you said, you're back to where you started.

It is not a fun situation to be in. It makes it difficult to plan things and friends and family are not always understanding. I think my family thinks I'm just a wimp sometimes.

I work full-time and recently I got the feeling my co-workers were thinking I am not able to do my job because of my on again off again symptoms. I RARELY EVER miss work, but I push myself too much and cannot tolerate the stress level that I used to be able to. It's very humiliating, and frustrating. However, I still come through and always do a stellar job, but I always pay the price.

The ups and downs of dysautonomia are the most irritating thing for me. I feel your pain! :o

You are definitely not alone. It does make me very appreciative of when I'm feeliing good though and I try to do a lot of things I enjoy during those times.

Hugs,

Gena

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Thank you hmichel and gena. Wow I can't even imagine working out of the home. I think I would get fired because I would not be able to function.

My kids are 7,4 & almost 2 so I have alot of work with them but since I've been sick my husband does 70% of care taking and upkeeping of the home. I'm the fun one who gets to read the stories and watch the movies with them and just cuddle them.

Dayna

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Dayna,

I just want you to know that youre not alone. Please feel free to tell us how youre doing on this difficult journey.

My symptoms have been debilitating now for 3 and 1/2 years...I get out of the house a little bit (like going for short walks or to run a short errand on my good days) but my husband does most of the house work/etc. I know what it's like when others incorrectly judge you or just plain don't believe you.

I keep praying that this will only be a season of my life and that someday things will improve.

Please try not to "beat yourself up" about your family life. I know this must be extremely difficult not to be able to enjoy an "active life" with your children but I'm sure your childrens' memories will be of your love and nurturing. My mom had CFS for a large part of my life and I don't remember feeling sorry for myself during this time....I didn't want her to suffer.... but all my memories are of her constant love and support.

Hang in here and I hope we can encourage you in some way right now,

Lisa

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Hi, I can relate to you guys. Although I don't have kids or a husband I do have a family that most of the time doesn't understand me. I really admire those of you who are able to work and esp. those of you who can raise a family. I haven't worked for months and I guess ppl seem to think that I DON"T want to work when in reality I CAN'T work right now. I hate that I have lost alot due to the illness. Sometimes I wonder if I will ever be my old self again. It's hard to turn down friends time after time because they don't understand that I really can't go out to eat even for "just an hour." Or to tell my sister why I can't go with her to look for a car, etc.

As much as things bring me down, I realize that I am lucky that I don't have a life threatening illness and am greatful for the things I can do. I refuse to give up hope, because w/o hope there is not a whole lot to look forward too. So here's to keeping the faith that someday ALL of us will feel normal once again (for more than a week, LOL)! :D

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Hi,

I totally understand. It is rare that I have a good day anymore. Maybe once a month. I know what you mean about walking to the bathroom, sometimes it feels like a journey. Climbing the stairs at night to go to bed, I dread it all day. I try to be optomistic. I pray for a better day every night. I started seeing a counselor a few months ago, I always want to cancel on the day but make myself go. She kind of understands. I don't think anyone can really understand unless they have this. I feel like a disappointment to my family alot. I just cannot make myself do things anymore. I used to get mad and just do it. Now I'm just too tired to fight the symptoms. It feels like our lives have been taken from us.

I feel bad for you having a little one.

Are you on any medications. I could not function without Inderal and Xanax.

Dawn

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I feel a lot of what you gals are feeling. The doc's still haven't quite figured me out yet. It is one specialist after another. I have been very ill for 2+ years now and it is really wearing thin. I work in the medical field and my speciality is babies and children and since I get exposed to too much crap they told me to find another profession. That is like telling me to stop breathing. On the other hand it is better for me to remove myself from the situation.

I have 4 children 17,19,21,and 23. Family life really stinks. This illness has really created tension in my marriage. i am so glad to hear that I am not crazy. It is sad to hear how many people are suffering though.

I have a rather personal question and i hope someone out there is able to help me to understand this.

I love my husband and I love being with him in every way but since this "funk" took hold of my life and body parts, things don't work. i can't get "over" the mountain, if you know what I mean and if I do it is really whimpy. Things hurt and sensations don't feel good. It is almost compared to being used and abused. The feeling of getting no where really stinks. I know that I am not satisfying my husband. I tried to talk to the autonomic doc and the gyn and endocrinologist and these men seem to think that that is normal for me and pretty much "get used to it" attitude or they just blow it off.

any suggesstions?

Thanks so much for all of you being so honest with your feelings and symptoms. I really don't feel so all alone anymore.

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Linda,

You are not alone on this one either. I have not been able to have a healthy sex life for years. It puts a real strain on our marriage. I have become passive and usually just avoid the situation but you feel the tension.

Beta blockers are partly to blame as they take away the sex drive. But just having sex is not a release for me it actually is a trigger to make me feel sick. I don't know what to tell you, after years of this my husband's expectations have lessened a great deal. We talk about it, it's hard for him to understand but so are alot of my other symptoms. I wish it was something I still enjoyed and could "escape" reality for awhile but it just doesn't happen.

Dawn

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I'm right with you guys. I've been sick for 1yr and 1/2 and can count on 1 hand how many times me and my husband were intimate.

Nausea and intimacy just don't go well together.

My husband is understanding but it causes some tension because we know a marriage needs intimacy and we have everything but that.

Too be honest I know my husband loves me, but I don't think he's attracted to the person I've become with this illness. I think he feels more like a cargiver and we are closer than ever but it's just not the same anymore.

It's definitely something we need to work on. I need to take better care of my appearance (sweats and no make-up aren't working).

Dayna

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I second this. I know I am loved (usually), but respected?? I dont think so. I dont think he thinks that I am doing my best...I have to sit down or lay down so much, and take naps, and don't notice stuff, and etc. etc. etc. He loves to hike and camp and I just cant. A hike makes me miserable if it is very far and camping (sleeping on the ground etc) is good for a night or two and then the exhaustion kicks me off. etc. etc. We used to bike together to work and I would try so hard to keep up, but I just couldn't and then I would be toast. He tells me to work out and, on top of working etc, i rarely make it..I just don't want to put myself over the top.

I was thinking, It is like everytime I push myself and then crash and burn I get a new symptom or an old symptom becomes more severe and then the next time I have that new or improved thing too...I dont push myself beyond where I know I can for fear that one day I will simply be buried alive in symptoms. Yuck, so hard.

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I feel for ya.

Being called lazy for the last 15years doesn't make ya feel good. Now they tell me about NCS & POTS. My daughter looks at me with a look like she wishes she had a better mom. Since I had my last baby my syptoms have gotten much worse. Doc pulled my license. So now my husband does all the housework, takes me & the kids to work & daycare. & he says "honey it's fine, we will handle it" that makes me want to scream. He tries so hard & does such a great job & All i can do is sit on my fanny hoping to have a descent day to spend with my family by that time he is exhausted from doing everything else. lol

Q? I know brain fog is associated with this mess. How about memory loss or early stages of dementia?

mine goes alot farther than brain fog. I lost my license because I didn't know where I was(few blocks from home) & I began to feel lightheaded & ran off the road. Killed my Jeep!!! But no one was hurt thank GOD!!!

JEN

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Hi Jen

I read your brain fog description...I think alot of people who have this problem experience the brain fog thing here and there, but if you are having trouble remembering where you are or forget where you are going (directions type thing especially if it's a traveled direction you usually take).......you might want to have your thyroid level checked. An off thyroid can cause this type of memory problem.

Just a thought.

good luck

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You are definatly not alone! I think everyone here has had it with this illness. I know that I have. I call it a family illness because it affects the whole family. My husband is also very supportive. Works two jobs, takes care of the house, and takes care of me. We have been married for 33 years, and we have always been devoted to each other. My daughter sold her big house and bought a small one next door so she could take care of me when my husband is at work. My son is going to move in with us as soon as he can, so he can help to take some of the load off of the rest of the family. Even my son in law helps out when everyone else can not be here. So you see it affects the whole family. So no you are not alone.

This is an illness that is hard to handle. I had not even had a cold in about 20 years when I came down with this. And I live in a small town in New Mexico where you have to go out of town to get most medical help, but there is not a doctor in this state that knows anything about this illness. My cardiologist is trying but nothing is helping. Everything that he has tried makes my medical problems worse.

I dont have a full diagnosis yet, mostly symptoms, my doctor is guessing and he even told me that. I have sent in my application to Vanderbilt, hopefully they will be able to help me. I have given up my license, got a handicapp sticker, and applied for disability. I am not even 50 yet, but I feel like I am 80.

I have horrible outbursts of anger now, and I cant seem to control them at all, but my family seems to understand. This illness is debilitating for some and not for others. I dont know why but from everything that I have read that is the way that it goes.

I hope that this post will help you. I dont think so well lately. I dont know if it is the low b/p or what but sometimes I dont make much sense, but I hope this does help you. If you would like to pm me you can. I hope that you start to feel better. Vanessa

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Mrs. Glass i hear you. I can't take much more of this myself. As far as the brain goes, the cognitative thinking slows down. They say that is normal for dysautonomia. The doc said to me "You know the body and how it works, all of the normal body functions and systems that are autonomic are affected. Your brain is one of them." He said eventually your whole autonomic system will slow down and stop all together. That really gives me alot of hope you know? I have had a lot of these symtoms for as long as i can remember but it wasn't until 2004 that they stop blaming my emotions and started searching for other answers. Meantime I suffered many years with no treatment. This really stinks, if I can be honest. I don't know how some of you deal with all of this stuff. I am strong in my faith but it is just getting on my last nerve. Now I am so ****** that I can't stand being around myself, I don't know how my husband takes it sometimes. And sometimes he is just a jerk and thinking that i am being lazy and unwilling to satisfy him as wife is suppossed to.

I hear you when you talk about being tired and tired of people calling you lazy. I have never been lazy. I always work hard. Now it is hard for me to do my job and i can't remember what it is I need to remember. I hate it. The doc has me working on some Chunking methods for remembering. You chunk words that go in the same groups. like states, colors animals etc. That has helped quite a bit.

Thank all of you for being so honest with you sx, feelings opinions etc. It really helps people like myself not to feel so alone.

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Mrs. Glass i hear you. I can't take much more of this myself. As far as the brain goes, the cognitative thinking slows down. They say that is normal for dysautonomia. The doc said to me "You know the body and how it works, all of the normal body functions and systems that are autonomic are affected. Your brain is one of them." He said eventually your whole autonomic system will slow down and stop all together. That really gives me alot of hope you know? I have had a lot of these symtoms for as long as i can remember but it wasn't until 2004 that they stop blaming my emotions and started searching for other answers. Meantime I suffered many years with no treatment. This really stinks, if I can be honest. I don't know how some of you deal with all of this stuff. I am strong in my faith but it is just getting on my last nerve. Now I am so ****** that I can't stand being around myself, I don't know how my husband takes it sometimes. And sometimes he is just a jerk and thinking that i am being lazy and unwilling to satisfy him as wife is suppossed to.

I hear you when you talk about being tired and tired of people calling you lazy. I have never been lazy. I always work hard. Now it is hard for me to do my job and i can't remember what it is I need to remember. I hate it. The doc has me working on some Chunking methods for remembering. You chunk words that go in the same groups. like states, colors animals etc. That has helped quite a bit.

Thank all of you for being so honest with you sx, feelings opinions etc. It really helps people like myself not to feel so alone.

Lynda,

Girl you just said it all. I hate that we are all going through this, but its nice to know someone out there knows how you feel. Family is great & supportive but we only know whats really going on & I have only ben using this forum for a week now & chatting with all of you makes my day alittle easier. :D

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