Couples with chronic illness: how do you deal?

[Novel]

Hi all,

I''m looking for some input... I have a confusing and strange (and seemingly undiagnosable) chronic pain condition. Some days I can manage a normal lifestyle, some days I can''t get off the couch (literally). I live with my boyfriend, who, luckily, is wonderful about it. He understands that I have limited energy on all days and that there are certain things that I can''t do around the house, as much as I''d like to. The problem is, when he does push, I feel terrible. Not blaming him terrible, but like I''m lazy.

So my question is, others in relationships where illness plays a role, how do you manage chores and the house? How do you keep guilt or resentment from building up? We talk about it a lot, but I guess I worry if I apologize too much or bring it up too much he''ll just get sick of the situation faster. I guess its a form of "what they don''t realize won''t hurt them

".

 

[DivaDiamond007]

I''m interested in this too. I became disabled after a blood clot (DVT) and muscular atrophy and DH and I seem to struggle with this everyday. I went from being a happy, healthy, new mom to this. I am slowly starting to be able to walk again, but I am still in pain and my leg is very stiff. Sometimes I feel like my husband thinks I enjoy being like this and he''ll make little comments about it. It is especially bad because we have a very energenic and ornry 14 month old son.

I am sorry to hear about your medical problems, Novel and I''ve found that talking to my DH about it helps. It also helps to talk to other people who may not understand what it''s like to be disabled. I hope that your doctors can find a diagnosis and that you''re feeling better soon. ((((HUGS)))).

 

[cellososweet]

oh man, im so there with you.

I have an undiagnosed illness that causes me to pass out cold from seemingly minimal amounts of exertion or heat. It is absolutely debilitating. The worst part is that I'm pregnant. So, even though passing out a lot is bad enough as it is, since I am pregnant it's an even bigger concern since I completely lose consciousness and my blood pressure is so low that it could cut of necessary blood supply to the baby.

I used to be a type-A go getter. I worked 50+ hours a week, taught cello on the side, kept an impeccable home, cooked three course meals randomly in the middle of the week, baked muffins for sunday breakfast, did special things for DH and my family, worked out, crocheted, helped friends with their projects. Basically I was June Cleaver on freaking crack. Haha. But it was "me." DH and I have been together for 6 years, so this is the "me" that he has known. It has been incredibly difficult for both of us that I'm on bedrest and cannot function at even a fraction of my "normal" capacity.

We just had a conversation a few weeks ago about how we really both want our lives back. He wants me to do all the things that make me happy and he wants to go out with me, explore the city, spend quality time together, etc. I told him that it was perfectly normal to want "his wife" back because he felt guilty even saying it (I had to coax it out of him. He thought it would make me mad. Bless him).

We have gone from a fairly traditional marriage (I did all of the cooking minus a few nights here and there and most of the cleaning. He had a few "man chores" like taking out the trash). Now, he's doing everything from meal prep to cleaning, to taking care of me, taking me to the hospital, etc. It's so draining on him and I really feel bad.

Worse yet is that our sex life has suffered. Or at least I feel like it has. I'm ok with it for myself and DH says he's ok with it. But, I'm not ok with it for him. Does that make sense? We just feel like our whole life has been flipped upside down. I can't work, I can't cook, I can't go anywhere, I can't clean, I can't do special things for us, I can't even get naked. What the heck am I good for right? I've so had that conversation many times.

But, we both came to the realization that even though we miss "our" life, this is our life. For now. We know that it won't always be like this and if for some reason it is, then we need to rearrange our expectations and our definitions of what "our life" is. Maybe our life isn't gourmet cheese tarts and fresh muffins on Sunday. Maybe it's a muffin from the bakery and snuggling in bed afterwards. Maybe our life isn't romantic dinners out. Maybe it's pizza and a movie. Maybe it's not all-night hot and heavy. Maybe it's just a cuddle, a hug, a kiss. I must say, we've been making out like teenagers which is a renewed fun thing that we haven't done in years We have to find different ways to appreciate each other, different ways to show we care, different ways to "love" each other.

The most important things that we've found that we need to do is to stop comparing our life now to how our life used to be. Our life is still good because it's ours and there is no illness that can take that away. I've had pneumonia, been on bedrest, been in the hospital numerous times, tripped upon this weird condition, had to quit my job, passed out in public. All within the last 4 months. Now we are having to move in with my parents because I honestly need help with the baby once he is here. DH works a ton and we're both terrified that he's going to find me on the floor somewhere and the baby would've managed to hurt himself trying to figure out where I was. It's a terrifying thought.

Ok, enough of my rambling. I hope this helped in some way, shape, or form. There are so many cliches for this. I think this one works best: "Life is what happens when you're making other plans." (((hug)))

 

[Novel]

Oh ladies, hugs hugs (((hugs))). So many hugs.

Diva, I totally understand. I''m so sorry you have to go through that! You''re right, talking about it is the only way to get through it. I think sometimes talking to people who don''t get it is interesting, but I guess I often come away feeling bristly about it. Surprisingly, my boss is a good person to talk to, as long as I don''t give her too much detail or make her worry about me doing my work. I can only imagine with having your son in the house how hard it is. Thats one of my big fears, of what will happen when I have kids (if I do, and can). I worry, too, that he''ll think I''m malingering or being lazy because its easier. I guess all you can do is be honest. Have you had PT? Is there anything thats helping? I''m so glad your walking is coming back! I''ve been there, and it took years to feel normal (or what is normal now) but I got there and have a cane no more!

Oh, Cellososweet I know what you mean. I''ve been like this since I was 19. I don''t know that I remember my life before. Its hazy... which maybe is good. What I sometimes wonder is if bf and I would be such a good match if I could go out more, do more, dance more. All the things I loved before... I know what you mean exactly about the sex. I feel like this isn''t fair to him, even though he would never say it. I miss having the energy to want to be with him that way. I mean, yes, some days I''m normal again, but there are so many days where I fall asleep while talking, much less anything else.

I worry so much about what our relationship "should" be like, even though I know I shouldn''t and I truly believe he doesn''t. Even though he is the dishes man, and the vacuum guy, too, I feel terrible on the nights I come home and don''t cook. But finding the beauty, the unity, the coupleness, in the little things helps.

I feel for you with your soon to be little one. Congrats on the prego, btw, even with all this! That is scary to think of, I know. Have you been checked (I know, I hate it when people do this too) for POTS? I''ve had some blood pressure issues and I know the exercise intolerance came up. But with all that you''ve been in the hospital, I''m sure they''ve thought of it...

Thank you, both of you. Yes, it helped! Sometimes its nice just to know you''re not alone.

 

[cellososweet]

POTS is actually high on the "could-be" list. I bought it up to my physician after some research. Unfortunately the tilt-table test makes your blood pressure drop (that''s kind of the point), and at a baseline of 80''s over high 30''s, I can''t let it drop any further while pregnant or it will endanger the baby.

So, I have to wait until I deliver to get on the table. I hope it yields some answers

 

[Novel]

I hope so, too! I hated that test, so I''m glad you get to wait

Actually, now that I think about it, I think part of the reason I hated that test was the cardiologist chewed gum the whole time, and it smelled so good! When you haven''t eaten since the day before, well, thats just mean!

 

[Haven]

My husband has cervical spinal stenosis, which is the narrowing of the cervical spinal canal. His condition is congenital, he was first diagnosed around age 30. The symptoms include shooting pain down his limbs and back, which causes him to get dizzy, and he is unable to move without serious pain when his symptoms act up.

He wasn''t always great about telling me that he was experiencing symptoms, so he would completely withdraw from me and everything else and I would think that something was wrong with *us* or that he was suffering from depression or something similar. After being with him for a few years I learned to recognize the small changes that occur in his demeanor when he''s feeling pain, and I''ve also learned how he prefers me to act when he''s feeling this way because we learned to communicate better about this particular thing.

As far as it affecting our day-to-day lives, I just have to take care of everything he would normally do when he''s feeling symptoms. I guess we cope by making sure that we communicate very clearly, and that I know what he needs and how best to react when he''s feeling awful so as to minimize his discomfort. It took a while to clearly articulate these things, and for me to accept the fact that he needs to withdraw from everything completely and there''s really nothing I can do to help him feel better but pick up the slack with the house and pets, give him the space he needs, and minimize stress in our environment.

If I can draw anything good from this, it''s that my husband used to be an occupational therapist, but this condition led him to his current specialty and career because he found it when he was searching for treatment for his pain. He is now a muscle specialist, and he has a huge network of other specialists who treat him two to four times a week which means he rarely suffers from serious symptoms from the stenosis nowadays.

I''m so sorry that so many of you are in horrible pain.

 

[Novel]

Haven, thanks for replying. Its so good to hear from someone on the other side of this. Something you said about him speaking up when he is feeling symptoms really struck me. Probably half the time, unless my bf sees me respond to pain (my body jerks or my breathing changes) I don''t let on or tell him that I''m feeling it. We always hear "oh, you''re so strong" or "she never complains!" like silence and stoicism are good things. Sometimes, its hard to feel like keeping your partner aware is different from complaining, you know?

I''m so glad your husband is experiencing fewer symptoms, and that he has someone as understanding as you.

 

[Haven]

Novel--I think a lot of people feel the same way you do as far as not wanting to complain too much. I can''t tell you how much better it is now that he''s helped me learn how to "read" his symptoms and I''ve learned that certain behavioral changes are about his pain and not about anything else.

There was a period of time very early in our relationship (maybe a year and a half after we met) when I thought he was just not interested in me anymore, and I considered leaving him. It turned out that he was just experiencing a lot of pain and he didn''t want to burden me with that, so he withdrew from me and became very distant. I am eternally grateful that I did not leave him then, and that he has since opened up and shared his pain with me.

It''s stressful for your partner when they don''t know how to react or what to think about changes in your mood, so communication is really key as far as that is concerned.

I hope you find a way to manage your pain. As a Muscle Activation Specialist my husband sees a lot of people who have suffered chronic pain for years and years, and his treatment nearly always helps them manage their pain. He left OT because the methods they were taught didn''t jive with what he knows to be true about the body and biomechanics, and in practice he didn''t see many compelling results, so it''s wonderful that he now practices something that he knows works practically, and makes sense on a scientific level.

 

[DivaDiamond007]

Novel - I have been in very aggressive PT for the past 2 months. I go 3x per week for an hour + at a time. I''ve lost so much strength that I cannot rise onto my toes or use them to "push off" when trying to walk normally. The worst is the cramping and spasming that I''ve had that just doesn''t want to go completely away. I take Percocet on therapy days and Tylenol 650 on non-therapy days and that seems to help. I also have a muscle relaxant, but it doesn''t play nice with the Percocet so I take it sparingly.

I think my marriage has suffered because of this. It also doesn''t help that we live with DH''s parents and his mother especially seems to think that one day I''ll wake up and just be "normal" again. DH and I can no longer do many of the things we used to because I can''t walk enough to do them. It is depressing for me and I know that he has feelings of resentment. I''ve tried my best to do eveything that I can to get better - PT is not fun or easy and the drugs make me feel terrible. I just try to take things one day at a time - I can finally lift my son to carry him and stand up in the shower. I can walk from my car to my office with not too much effort so things are getting better, but not the best.

It''s funny how life throws these things at you. I think about it a lot but don''t have too many people to talk to about it IRL.

 

[brightlight]

Both my husband and I had chronic illnesses during our relationship. He had a chronic illness that we worked through for several years of our relationship. Once he recovered from his illness, I became sick. We''re both healthy now, but supporting and taking care of each other through our illnesses made us stronger as a couple. This was all before we were married.

 

[Novel]

Diva, I''m so sorry. It takes so much time, I know. I did daily PT for 9 months plus more drugs than I care to think about. The atrophy gets better, but its hard and frustrating, and some people put their hope that you''ll wake up different one day out there as a demand. It makes it feel like they don''t understand. My mother can''t really deal with the details of how I feel or whats wrong because its so upsetting to her, but instead of it feeling like empathy, it feels like blame. I''ve been there, I totally understand.

I think what Haven is saying really makes sense for you. Its always been hard for me to ask for help or be honest about how icky I feel, but the more I tell my bf, the more we can work through it together. Once the resentment is there, it makes it even harder to talk about it, but its still so meaningful to have that continuing conversation. Do you have a prognosis? Does your DH have reason to feel like this is permanent or is it just that sinking pit of the stomach feeling? Thats always my fear, that I''ll lose hope, or that he will.

I don''t have many people IRL who get this either, so you can always talk to me. Always.

Brightlight, thanks for chiming in! Its so good to hear success stories! There have been so many articles lately about how detrimental these things are in a relationship, and it scared me! I''m not even at the marriage stage yet and we''re dealing with this

.

 

[radiantquest]

As some of you know my husband has a tumor. It isn''t life threatning, but he does chemo for it. The chemo really takes alot ot of him. He does him chemo on Fridays. Saturdays he sleeps all day mostly and then Sunday he is very sick. I feel so bad for him. During the week he is better, but he doesn''t make it back to 90% until Thursday, just in time for chemo again on Friday. This tumor came along when we were together and we are pretty open so he never really had a chance to try and hide symptoms from me. It was all new for both of us. After the first treatment we discussed how he felt. We discuss how he feels all the time. I am sure that it is very hard for him to not feel well. It is such a long process too. Even when I am sick, just from a cold the only thing that gets me through is knowing that it is just a few days so for him and all of you not knowing how long it will last or if it will ever stop must be nerve wracking. If I could have the tumor and go through the chemo for him I would do it 5 times over to keep him from having to do it for one more day, but that is they way life is. As his wife I am very supportive and I would never blame him for not doing things around the house. I have had to scold him because he will get short with me. I will tell him that I know that he does not feel good and that I understand, but that he does not need to talk to me that way. We handle it the best we can and it works.

 

[TooPatient]

Hi Everyone.

I haven''t read all the stories here yet. I''m at work right now. I''m thrilled to find this thread.

I''ve been with B for 5 1/2 years now. About 5 years ago we discovered that his chronic pain, skin problems, muscle problems, etc. responded to fungal creams. Nothing else would touch it. Carpal tunnel release, physical therapy, eczema treatments, steroids,. Nothing.
We researched and found a great website on fungal infections. Pictures & all. It looks just like what is on him. EXACTLY. And the descriptions of other symptoms were right on too.
Doctors don''t study this stuff. They think that it never happens. I finally found one who is willing to treat this. B is getting better but it is awful.
He''s had this for 30+ years and it is a long struggle. Been on oral medication for 2+ years and another 6 months to go on this prescription. Creams for 5 years.

We''ve been to the emergency room a couple of times. I dread the phone ringing while I''m at work (I''m a secretary -- eek) because he has to call me sometimes to get home NOW.
His blood pressure had been at 185/105 with spikes as high as 212/119. (this is now down to 140/96)

Friday last week he got dizzy. Had a headache. Described it a "pressure" in his head. I got him onto the couch. He started to babble about random stuff and his voice was wrong. He couldn''t get up.
So scary. He''s had all this before and going to the ER doesn''t help. So I was home alone with him. Hoping it was just the usual and not a stroke or something. Hoping I wouldn''t wake up in the morning to find him dead.

And so much more.

I feel so alone. No one understands this. They don''t get chronic illness. They don''t get that I can''t just leave him at home alone and go out (services, work, etc.). It is so frustrating. People keep saying "he''s still sick?" like they don''t believe me or he must be making it sound worse than it really is.

We can''t count on him being able to cook or clean or anything. I do 90%+ of all cooking and 70%+ of all cleaning.

I WANT to take care of him. I WANT him to lay down and let me take care of it. I AM able to deal with it. But he feels so bad. He tries to help. He has said that he feels guilty. He shouldn''t.


It is so hard for me. I don''t have anyone to talk to about this. I can''t talk to him about how tired I am. How it is so exhausting cooking meals and cleaning and caring for the animals and taking care of him is. I''m happy to do it. I want to do it. I don''t want to stop doing it. I just need to be able to say how tired I am or how scared I am.

 

[deegee]

Oh, I''m sorry everyone. Hugs to all of you.

3 years after I was married, I was in a really bad car wreck and suffered an injury to my spine. I haven''t had a pain free day in over 11 years, and I too have days where I can''t get out of bed because it is just too much. After years of denial, I have finally accepted that I can''t do everything I once did, and that I have limitations and have to ask for help. I had to find a new normal. I have an article that someone gave me years ago called "With enough aspirin - living for now in pain''s company" (you can find it by doing a search) that sums it all up. I have accepted that this is permanent and progressing, and I have moved on to being as normal as possible. (Although some days I don''t feel like slapping a smile on my face and pretending that everything''s okay!)

Luckily hubby is very understanding. I just hate that the only me he probably remembers is the broken one! He tells me that he thinks we''ve grown closer because of it, and that I have changed as a person, that I have gained perspective. Things that once would have driven me crazy simply don''t matter anymore. I can''t let myself get worked up so I have learned to let things go. We spend a lot of time together, and I know that I''m very blessed to have him.

Hang in there!

 

[TooPatient]

Been a hard few weeks.

B doesn''t usually talk much about what he is feeling. He''s gotten better about it, but is so sick and in so much pain so much of the time that he can''t tell me all the time.

All of his signs that he is going through a really sick patch or a very painful day are EXACTLY the same as the ones when he is stressed about work or angry with me. I ask how he feels and he says "fine". So I keep prompting "how is your back today"; "are your shoulder blades moving more freely";"did your hands swell up today"; "how is your urine color"; "are you still sick to the stomach"; "I see more spots on your back, does it hurt or itch"; etc.

I wish he would just tell me. He is better about it now but I am still guessing most of the time.

I''ve been reminding myself that he is getting better. This is all part of getting over the infection.


A bit of mixed news: his infection is contagious.
I''ve got the spots and pain starting too. So I''m getting a better understanding of what he is going through.

 

[TooPatient]

Haven--

It is so nice to have another person who is doing the caring. Chronic illness is very hard on the sick person but I don''t think people realize just how hard it is on the person who is trying to make them comfortable & do the job of two people with the house/pets. All while being (or at least looking) understanding and relaxed and strong.

 

[Novel]

Date: 9/25/2009 12:06:02 PM
Author: TooPatient
Haven--


It is so nice to have another person who is doing the caring. Chronic illness is very hard on the sick person but I don''t think people realize just how hard it is on the person who is trying to make them comfortable & do the job of two people with the house/pets. All while being (or at least looking) understanding and relaxed and strong.

To all of you, I''m so sorry this is how things are...

Haven, Radiant, TooPatient, you caretakers are our lifeblood. If I didn''t have my boyfriend, not only would I not eat half the time, I''d be miserable. Just having someone who understands, even if he can''t relate, is precious. Thank you for everything you do.

Its exactly what you are saying that I''m worried about. My bf doesn''t want me to be alone with my fear and guilt, I don''t want him to be alone with his resentment or exhaustion. I don''t know how we share those things without adding to the other''s burden, but if me sharing my pain is so important to him, shouldn''t the reverse be, too?

TooPatient, I am so sorry to hear about how B is, and that its contagious. Is there a way for them to stop it for you, since its earlier??

 

[TooPatient]

Date: 9/25/2009 1:57:17 PM
Author: Novel

Date: 9/25/2009 12:06:02 PM
Author: TooPatient
Haven--


It is so nice to have another person who is doing the caring. Chronic illness is very hard on the sick person but I don''t think people realize just how hard it is on the person who is trying to make them comfortable & do the job of two people with the house/pets. All while being (or at least looking) understanding and relaxed and strong.

To all of you, I''m so sorry this is how things are...

Haven, Radiant, TooPatient, you caretakers are our lifeblood. If I didn''t have my boyfriend, not only would I not eat half the time, I''d be miserable. Just having someone who understands, even if he can''t relate, is precious. Thank you for everything you do.

Its exactly what you are saying that I''m worried about. My bf doesn''t want me to be alone with my fear and guilt, I don''t want him to be alone with his resentment or exhaustion. I don''t know how we share those things without adding to the other''s burden, but if me sharing my pain is so important to him, shouldn''t the reverse be, too?

TooPatient, I am so sorry to hear about how B is, and that its contagious. Is there a way for them to stop it for you, since its earlier??

No way to stop it. Using the topical stuff I''ve been able to kill it pretty well. Lots of laundry washing helps. We are hoping that when his is cleared up it will quit spreading back to me. Even the doctor treating B won''t give me a prescription to take orally. Maybe when his is all gone. Otherwise it''ll just spread to me when I stop taking the pills. I can''t take them until his infection is gone. They''ll risk the side affects of the medication on him but don''t want to do it on me.

Imagine how mold acts. If it is growing on one thing it spreads to the stuff around it. If you clean it off the thing next to it but leave the original source alone, it will just come back.
Kind of like that. Once it is gone on (and in) B, they might give me a prescription. Since he''s already been on it so long and expecting at least another year it is a long time. The topical stuff is doing pretty well so far and doesn''t really have any problems (other than dry skin).


Novel & all others who are suffering chronic illnesses/pain --
Talk to the person caring for you. Let them know when you feel sick. If it is a little sick or a lot sick. That this has gotten better or worse.

It really helps. Makes providing whatever is needed easier (because then we know what is needed). Also helps to imagine an end in site. In my case, it may be a year or two or more but I KNOW that it is getting better. Even when there are set backs I can remind myself that it is going in the right direction.

 

[Ara Ann]

Date: 9/25/2009 4:40:13 PM
Author: TooPatient

Date: 9/25/2009 1:57:17 PM

Author: Novel

Date: 9/25/2009 12:06:02 PM

Author: TooPatient

Haven--



It is so nice to have another person who is doing the caring. Chronic illness is very hard on the sick person but I don''t think people realize just how hard it is on the person who is trying to make them comfortable & do the job of two people with the house/pets. All while being (or at least looking) understanding and relaxed and strong.

To all of you, I''m so sorry this is how things are...


Haven, Radiant, TooPatient, you caretakers are our lifeblood. If I didn''t have my boyfriend, not only would I not eat half the time, I''d be miserable. Just having someone who understands, even if he can''t relate, is precious. Thank you for everything you do.


Its exactly what you are saying that I''m worried about. My bf doesn''t want me to be alone with my fear and guilt, I don''t want him to be alone with his resentment or exhaustion. I don''t know how we share those things without adding to the other''s burden, but if me sharing my pain is so important to him, shouldn''t the reverse be, too?


TooPatient, I am so sorry to hear about how B is, and that its contagious. Is there a way for them to stop it for you, since its earlier??

No way to stop it. Using the topical stuff I''ve been able to kill it pretty well. Lots of laundry washing helps. We are hoping that when his is cleared up it will quit spreading back to me. Even the doctor treating B won''t give me a prescription to take orally. Maybe when his is all gone. Otherwise it''ll just spread to me when I stop taking the pills. I can''t take them until his infection is gone. They''ll risk the side affects of the medication on him but don''t want to do it on me.


Imagine how mold acts. If it is growing on one thing it spreads to the stuff around it. If you clean it off the thing next to it but leave the original source alone, it will just come back.

Kind of like that. Once it is gone on (and in) B, they might give me a prescription. Since he''s already been on it so long and expecting at least another year it is a long time. The topical stuff is doing pretty well so far and doesn''t really have any problems (other than dry skin).



Novel & all others who are suffering chronic illnesses/pain --

Talk to the person caring for you. Let them know when you feel sick. If it is a little sick or a lot sick. That this has gotten better or worse.


It really helps. Makes providing whatever is needed easier (because then we know what is needed). Also helps to imagine an end in site. In my case, it may be a year or two or more but I KNOW that it is getting better. Even when there are set backs I can remind myself that it is going in the right direction.

Hey Too Patient,

Have you tried a natural approach to controlling yeast/fungus? Has he taken many anti-biotics? Even if he hasn''t, he should take pro-biotics, you should too. Get some good ones (the kind that need to be refrigerated) from a health food store. It helps to keep yeast and fungus in check. There are many things you can do, naturally, to help keep this under control.

There is a GREAT website and book about this subject, called ''know the cause'' - it lists all kinds of health issues that stem from yeast and fungal infections and shows how to treat them effectively and naturally! There is no need for you to suffer or to pass this back and forth. Don''t just take the Dr.''s word for it either, they are pretty clueless when it comes to yeast and fungal infections.


Hope this helps!

 

[Ara Ann]

Date: 9/21/2009 2:11:50 PM
Author:Novel
Hi all,


I''m looking for some input... I have a confusing and strange (and seemingly undiagnosable) chronic pain condition. Some days I can manage a normal lifestyle, some days I can''t get off the couch (literally). I live with my boyfriend, who, luckily, is wonderful about it. He understands that I have limited energy on all days and that there are certain things that I can''t do around the house, as much as I''d like to. The problem is, when he does push, I feel terrible. Not blaming him terrible, but like I''m lazy.


So my question is, others in relationships where illness plays a role, how do you manage chores and the house? How do you keep guilt or resentment from building up? We talk about it a lot, but I guess I worry if I apologize too much or bring it up too much he''ll just get sick of the situation faster. I guess its a form of ''what they don''t realize won''t hurt them

''.

Novel, have you ever had your thyroid tested? Sounds EXACTLY how I felt, before I began treatment for thyroid problems. But I had to go the ''natural'' route and take supplements. I had every single symptom of low thyroid, but it didn''t show in my blood work. after doing research online, I discovered blood tests do not always detect thyroid conditions accurately. Once I began treatment, I feel 100% better. Get a blood test and if it''s normal, do some research online to see what you can find out. I am so happy I finally have my life back.

And, fibromyalgia is also a pain/fatigue condition related to low thyroid. Please check into this for yourself!

 

[Novel]

Ara Ann, thanks. I have had my thyroid tested (I think) and I thought those thyroid symptoms sounded pretty similar, too, but it came back clear. Its interesting, I didn''t know it could not show up on the tests! I should ask my... which doctor do I ask about that? As for Fibro, I probably have it, but my pain started after an injury (they thought for a while it was RSD) and so they''ve always thought its CNS or SNS (nervous system) related. Plus, they''ve given me all the treatments for Fibro they''ve got and they only help marginally.

I really should look into thyroid more. They''re thinking now its low blood pressure for the non-pain symptoms and "sometimes brains just do that" (!) for the pain symptoms.

 

[Ara Ann]

Date: 9/25/2009 6:49:45 PM
Author: Novel
Ara Ann, thanks. I have had my thyroid tested (I think) and I thought those thyroid symptoms sounded pretty similar, too, but it came back clear. Its interesting, I didn''t know it could not show up on the tests! I should ask my... which doctor do I ask about that? As for Fibro, I probably have it, but my pain started after an injury (they thought for a while it was RSD) and so they''ve always thought its CNS or SNS (nervous system) related. Plus, they''ve given me all the treatments for Fibro they''ve got and they only help marginally.


I really should look into thyroid more. They''re thinking now its low blood pressure for the non-pain symptoms and ''sometimes brains just do that'' (!) for the pain symptoms.

Eeek! I had VERY low blood pressure, which is another symptom of low thyroid...as is slow healing after an injury...there are about 25 main symptoms of thyroid disorders and you don''t need to have them all to reach a conclusion for yourself, but I had every one but one! Yet my blood work was ''normal''. Frustrating.

Mainstream doctors may/will not be of much help if your tests are ''normal''. I asked several doctors to let me TRY a thyroid prescription to see if it would help and none would...I suffered worsening symptoms for YEARS (progressing to hair loss and SEVERE fatigue and depression) before my new GYN gave me a prescription and it helped me within DAYS. Again, I have since gone the natural supplement route and still feel great. I''m not selling anything, but this has been life changing for me.

Also, you can not just treat the fibro, and expect to feel better...the root cause of fibro IS low thyroid, but again, mainstream doctors won''t treat you for it, if your levels are ''normal''. I also learned through researching this topic, that several years ago (like 20 or so) the ''normal'' ranges for thyroid levels were changed, so now it is actually more difficult to be diagnosed as having a thyroid condition. So if my blood test results had been judged by the ''old'' standards, I may have come in as low-thyroid. Many people are now classified as being in normal range, but have thyroid symptoms, yet Dr.s'' will not treat them. That is just not right and people are suffering as a result.

And interestingly enough, fibromayalgia is a ''newer'' disease, that has only surfaced SINCE the ''normal'' thyroid levels had been changed. Not a coincidence IMO. But there are many ''spin off'' prescriptions that Dr.s can prescribe for all of these symptoms, when low thyroid MAY be the main cause. Just makes me angry that I had seen several doctors that wanted to treat EACH symptom I had, with a drug, when it was all due to low thyroid, but they refused to let me TRY that route first. I had low blood pressure, they wanted to medicate me for that...I had hair loss, they had a drug for that...depression, try anti-depressants, pain, here are some pain pills...on and on it went...but those drugs do nothing to FIX the cause of the problem! And they refused to let me try the medicine that would have helped all of it. I guess there is money to be made from untreated low thyroid conditions.

Again, do some internet research for yourself, ''ask . com'' has a lot of great thyroid info. Maybe an endocrinologist could help, they are the specialists that treat thyroid conditions.

 

[Pandora II]

I''ve had chronic pain for over 7 years. I have spinal stenosis plus two herniated discs in my lumbar spine. I''ve had major surgery, lots of nerve root blocks, epidurals, acupuncture, spinal physiotherapy, in-patient chronic pain therapy programme etc etc - been there, tried everything!

Currently the situation is that I can''t have revision surgery, my neurosurgeon will either fuse my spine or put in an artificial disc or two - but not for another 15 years. I''m in agreement with him on this for many reasons - however doesn''t help the pain I have now (which is about 50% of what I had before the surgery). So, I adjust my lifestyle and take the equivalent of 60mg of morphine a day.

DH met me 3 months before my first major surgery, so he has never known me without this condition which probably makes it easier, as before it started to affect me I was very active and did a lot of climbing, walking, swimming, dancing etc and I now know that I will probably never climb another mountain again.

For me taking the painkillers is the biggest thing - it means I''m pain-free most of the time (as long as I don''t push my activity levels too much) and reduces the strain on DH of living with someone who is always in that way. My mother has MS with a lot of pain, so I know how hard it can be to be around people with those sort of issues!

We do have a cleaner who comes every week and also does all the ironing. She is a necessity for us not a luxury.

If DH wants to go hiking he either goes with friends or we do something where I can do a little bit and then get a train or something to the end point and meet him there...

We live in a house without stairs.

 

[TooPatient]

Date: 9/25/2009 5:56:09 PM
Author: Ara Ann

Date: 9/25/2009 4:40:13 PM
Author: TooPatient

Date: 9/25/2009 1:57:17 PM

Author: Novel

Date: 9/25/2009 12:06:02 PM

Author: TooPatient

Haven--



It is so nice to have another person who is doing the caring. Chronic illness is very hard on the sick person but I don''t think people realize just how hard it is on the person who is trying to make them comfortable & do the job of two people with the house/pets. All while being (or at least looking) understanding and relaxed and strong.

To all of you, I''m so sorry this is how things are...


Haven, Radiant, TooPatient, you caretakers are our lifeblood. If I didn''t have my boyfriend, not only would I not eat half the time, I''d be miserable. Just having someone who understands, even if he can''t relate, is precious. Thank you for everything you do.


Its exactly what you are saying that I''m worried about. My bf doesn''t want me to be alone with my fear and guilt, I don''t want him to be alone with his resentment or exhaustion. I don''t know how we share those things without adding to the other''s burden, but if me sharing my pain is so important to him, shouldn''t the reverse be, too?


TooPatient, I am so sorry to hear about how B is, and that its contagious. Is there a way for them to stop it for you, since its earlier??

No way to stop it. Using the topical stuff I''ve been able to kill it pretty well. Lots of laundry washing helps. We are hoping that when his is cleared up it will quit spreading back to me. Even the doctor treating B won''t give me a prescription to take orally. Maybe when his is all gone. Otherwise it''ll just spread to me when I stop taking the pills. I can''t take them until his infection is gone. They''ll risk the side affects of the medication on him but don''t want to do it on me.


Imagine how mold acts. If it is growing on one thing it spreads to the stuff around it. If you clean it off the thing next to it but leave the original source alone, it will just come back.

Kind of like that. Once it is gone on (and in) B, they might give me a prescription. Since he''s already been on it so long and expecting at least another year it is a long time. The topical stuff is doing pretty well so far and doesn''t really have any problems (other than dry skin).



Novel & all others who are suffering chronic illnesses/pain --

Talk to the person caring for you. Let them know when you feel sick. If it is a little sick or a lot sick. That this has gotten better or worse.


It really helps. Makes providing whatever is needed easier (because then we know what is needed). Also helps to imagine an end in site. In my case, it may be a year or two or more but I KNOW that it is getting better. Even when there are set backs I can remind myself that it is going in the right direction.

Hey Too Patient,

Have you tried a natural approach to controlling yeast/fungus? Has he taken many anti-biotics? Even if he hasn''t, he should take pro-biotics, you should too. Get some good ones (the kind that need to be refrigerated) from a health food store. It helps to keep yeast and fungus in check. There are many things you can do, naturally, to help keep this under control.

There is a GREAT website and book about this subject, called ''know the cause'' - it lists all kinds of health issues that stem from yeast and fungal infections and shows how to treat them effectively and naturally! There is no need for you to suffer or to pass this back and forth. Don''t just take the Dr.''s word for it either, they are pretty clueless when it comes to yeast and fungal infections.


Hope this helps!

Drs are extremely clueless. Been to more than I care to count and some don''t even think there is such a thing as fungus. Not even in toe nails.

That website is great. I hadn''t seen this one yet. Thank you!

We have both tried mangostene juice. Had a little affect the first month and then nothing. Take garlic and other herbal suplements and those help a bit. Daily baths in Borax. Vinegar sometimes. Healthy varied fruit & veggie & lean meat diet. (garlic, lots of onions, and some others help some)

We can''t afford a trip to the Dead Sea, but we live several hours away from another lake with an even higher mineral content. (Soap Lake in WA) Between the minerals in the lake and the direct sunlight, that makes a pretty big difference. Went weekly for about a year. Now we go every 4-6 weeks or so and use the soap in between. (This woman makes bars of soap out of the lake water so you get the minerals without the drive.)

 

[TooPatient]

Ara Ana--

Wonderful website. Thank you for sharing it. There is some new stuff we hadn''t seen before. Some of it confirmed what we saw and theorized was happening.

The phase one diet is pretty much what we eat. I''m going to look into his cookbook and see what else we can add (or get rid of).

 

[Ara Ann]

Date: 9/30/2009 11:46:25 AM
Author: TooPatient
Ara Ana--


Wonderful website. Thank you for sharing it. There is some new stuff we hadn''t seen before. Some of it confirmed what we saw and theorized was happening.


The phase one diet is pretty much what we eat. I''m going to look into his cookbook and see what else we can add (or get rid of).

So happy you found the site helpful! My sister had a lot of health problems that she discovered were also yeast related (after the Dr.''s had given up)...she''s the one who told me about this site!


I hope you and ''B'' can find further relief! Just hang in there...yeast and fungal issues are not fun to deal with, I know. ''B'' is very fortunate to have you!!!

 

[TooPatient]

Date: 9/30/2009 11:51:47 AM
Author: Ara Ann

Date: 9/30/2009 11:46:25 AM
Author: TooPatient
Ara Ana--


Wonderful website. Thank you for sharing it. There is some new stuff we hadn''t seen before. Some of it confirmed what we saw and theorized was happening.


The phase one diet is pretty much what we eat. I''m going to look into his cookbook and see what else we can add (or get rid of).

So happy you found the site helpful! My sister had a lot of health problems that she discovered were also yeast related (after the Dr.''s had given up)...she''s the one who told me about this site!


I hope you and ''B'' can find further relief! Just hang in there...yeast and fungal issues are not fun to deal with, I know. ''B'' is very fortunate to have you!!!

How is your sister? Was she able to get rid of the infection? Did it come back?


Sorry for all the questions, it is just so rare to find anyone who has the slightest idea what fungus is.

 

[Ara Ann]

No problem! I don''t mind answering questions when I can!


My sister is doing a lot better, but like you tries to watch how and what she eats...sugar and carbs are the enemy!...she still has occasional flare ups but is a lot better over all than she was previously. And as a side note, she also tried the prescriptions (Diflucan, sp?) and the were also a short term solution for her. The diet/supplement/natural anti-fungal route has worked best. And it''s also important to change up the anti-fungals you use, like with bacteria they can become resistant to things you take to kill them off (but you probably already knew that much!). Nasty little buggers!

Hope it helps!

 

[TooPatient]

Date: 9/30/2009 1:21:27 PM
Author: Ara Ann
No problem! I don''t mind answering questions when I can!


My sister is doing a lot better, but like you tries to watch how and what she eats...sugar and carbs are the enemy!...she still has occasional flare ups but is a lot better over all than she was previously. And as a side note, she also tried the prescriptions (Diflucan, sp?) and the were also a short term solution for her. The diet/supplement/natural anti-fungal route has worked best. And it''s also important to change up the anti-fungals you use, like with bacteria they can become resistant to things you take to kill them off (but you probably already knew that much!). Nasty little buggers!

Hope it helps!

It helps.

How long has she been dealing with the fungal infection? (had it or treating it)


We''ve tried most of the prescriptions. Lamasil is the only one to have any real affect on it. Topical we rotate between a few things. Prescription and non prescription (vinegar, Borax, visiting Soap Lake).