Is This Anxiety?

[stacdliw]

I've been sick for the past 18 years, first with Chronic Fatigue, then 7 years ago with moderate Gastroparesis, last October with dysautonomia and POTS and recently I've been diagnosed with daily moderate/severe pain in the upper epigastric region of unknown cause. Through all of the illnesses, I have had a positive attitude and remain cherry and happy.

However, over the past 3 months, I feel a tension in the back of my head and my temples. Sometimes, I feel like I'm going to explode! Though, overall I'm still cherry, my daughters tell me that I can be somewhat confrontational, impulsive and yes, childish.

I have my Master's Degree in Counseling and I realize that many of the things that I've been doing are wrong, yet I can't help myself. My husband has been the guardian for hhis retarded brother for 25 years. His 3 healthy siblings do nothing to help. So, he is now caring for 2 disabled loved ones. On Sunday, without consulting my husband, I sent a not so nice email to each of his siblings pleading for their help with their disabled sibling. I knew that was the wrong thing to do, but my head was ready to explode and I couldn't stop myself. Of course, when I told my husband, he was furious, but I don't care. I need him to help me too.

I'm becoming a person that I don't want to be. Is it this illness? a reaction to my illness-- I am homebound 70% of the time. Do I need counseling? But how can I go to counseling when I don't know if I'm going to be well enough to dress myself to make the appointment?

Does anyone else get these feelings in the back of the head? I'm on Cymbalta twice daily, so if it's anxiety, this medication should help. Right now, I just feel that I'm spinning out of control and I don't know how to stop!

Any advice would help!

Thanks

BEV

[lieze]

Bev I'm sorry.

I have had the pressure feeling before but I'm not currently experiencing it.

I have other sensations from time to time that make me unfit to be around anyone.

I barely cope through them.

I think what you are experiencing might just be normal for the situation you are in.

I'm feeling incredibly helpless here and I'm finding myself getting angry

I asked my mom two days ago about getting me sweet potatoes one of the handful of items I can eat and I have not heard back from her.

I called today and had to leave a message.

I feel abandoned.

I had gained a pound but I don't get any help around here.

I'm afraid I put that pound that I don't have to lose into dishes, laundry, and cooking....and I am resentful.

Why can't anyone else wash a dish.

They are literally stacked in the sink both sides high.

I am the only one that does them.

Why?

I know that seems like a petty thing but I just wanna run away to somewhere that can really help me get over this hurdle.

I need foods I can eat.

I need help to get healthy again...I cannot do it by myself and I feel abandoned and neglected.

It hurts and it makes me depressed, sad, angry and scared.

If nothing else it's good to get those feelings out and have a chance to regroup.

God be with you....I don't know what we are supposed to do/

How do we get anyone to listen?

[Jan]

I don't think it is anxiety. If you have a master's in counseling, it seems like you should recognize that you are losing your self control.

You say you don't care that you went behind your husband's back, but you should care. He needs respect just as much as you do. You can't ask for respect or love from someone you betray. If my spouse contacted my siblings behind my back I don't think I could ever trust him again, EVER!!!

It sounds like you resent his brother. You refer to him as "retarded" which is an incredibly derogatory out dated term. Maybe you aren't from the USA but if you are, and have a counseling degree, you know that the use of that term is pretty mean.

If your husband wasn't the kind of caring person who would be primary care giver to his brother for all those years, he might not be the kind of spouse who would care for a sick spouse. Many husbands leave their sick wives. Be grateful he is in your life. Tell him often how much you appreciate him. Focus on the positive things in your life. This isn't easy for him.

Pretend you are one of your counseling patients. Think of what you would tell them. Then follow your own advice.

What I would suggest, is when you feel like you are going to explode, and do something or say something, you should take a time out. It is hard to do when you are about to blow. Leave the situation that is causing you stress and breathe. Give your self a time frame. If you want to say something you know will be hurtful, make your self wait 24 hours. If you are going to DO something you are unsure of, wait a week.

Do you have anyone to talk to, like you kids or husband or a friend? When you get done with your time out, you could try talking to someone you know will be honest with you. Tell them your frustrations. You need honest feed back.

And apologize a lot when you do lose it. Being sick doesn't give you a ticket to be mean.

I sincerely believe that dealing with all your medical issues is what has made you short tempered, you have no control over a lot of things, but you do have control over how you react.

And Lieze, I think you need to sit down with the people you live with and tell them just what you said here. Assign everyone a task, and then let them do it. If it doesn't get done, it doesn't get done. Don't do it. You do have control over that. Just do your own laundry, and your own dish.

As for asking your mom for groceries, she has a life. Sometimes people are busy. Maybe you could ask her in advance when she is going to the store and then stock up on things you can eat. Maybe she can bring stuff once a week so you aren't resentful for having to wait a few days. It is really nice she shops for you at all and if you are doing some one a favor, and they complain you didn't do it quick enough, it makes a person not want to answer your calls.

You have no control over the stress in life, you do have control over how you deal with it.

It is so very hard to deal with our illness and our helplessness, it is hard not to get angry. We all need to try hard not to direct the anger at the people who love us.

[stacdliw]

Jan, I have to respond to a few things that you wrote.

First, I think you have misinterpreted my use of "retarded." My degree in Counseling is actually in School Counseling. I often worked with School Psyschologist who administered IQ tests. The clinical use of "retardation or retarded" is used to describe those whose IQ is below 70. In my brother-in law's case, his IQ falls within the low mentally retardation range. I did not use the term "retarded" as a term of degradation. Throughout my 30 years of teaching, the term to describe a below average IQ has changed nearly every decade. I used the term as a clinical term and I'm sorry if you found it demeaning. I could have used intellectually challenged, intellectually disabled, etc... Probably ten years from now, those terms will be offensive as well and a new term will be the "better" term. I agree, though, I don't like the word "retarded" as well as others, but all these terms still mean the same thing, a below average IQ.

I truly love my husband's brother as much as my own; however, what I resent is the problems in our marriage that the situation that the guardianship and lack of help from other family members have caused. My husband is the most passive aggressive person I know and he harbors extreme anger towards his entire family due to their lack of relationship to their brother. His animosity is so great that he has not had any contact with any of his family members for 4 years. Yet, he has refused to seek counseling or ever talk to his family about the pressures that the guardianship has caused. When the pressure becomes to great, his anger and tension is often taken out on me in a non-violent manner. His family situation has almost led to divorce several times during our 30 year marriage. However, I do love him because he is a good, caring man. One of the reasons I do love him is because of the way he cares for his disabled brother. Yet, selfish or not, I do need him now and I feel that his 3 other healthy siblings should help with their disabled family member.

Was I wrong to contact them behind his back? Yes. But he would have never, ever let me write that email. How else was I to get help? He spends hours doing things for his brother, but he does very little to help me out around the house. I've already apologized and I explained why I did it--because he wouldn't. Right now I can't be second fiddle to his brother anymore. I'm just too sick.

I guess I am letting this illness gain control over me. Guess I need some counseling to get a grip on my life. I surely don't like who I've become. I can't control my health, but I can control the person I become.

Thanks for listening.

Bev

[abnel]

Oh Bev, I can so relate to what you are going through now. My husband also has two siblings who do almost nothing to help their elderly mother. My husband works in a stressful full time, has been stressed looking after me, and also looks after his mother who was just diagnosed with cancer late last year. At the same time he was looking after me, he was also going over and taking his mother to radiology and doing a tremendous amount around the house for his mum. His 2 siblings who do not work and have no health problems or other issues preventing them from doing so, did very little to help. My father in law died a few years prior to this from cancer, and again, it was my husband who looked after his mum and dad at that time. The two siblings were nowhere to be seen.

I also get angry and resentful and have felt like doing exactly what you have done, but have refrained because my husband still wants a relationship with his siblings, (not sure that your husband still does), and I know that his siblings would not accept any home truths, especially coming from me. So I know the whole exercise would be counterproductive and would just get my husband angry and resentful towards me and result in his siblings never speaking with him again.

But I understand why you did what you did, particularly when you have been dealing with your illness for so many years, and this situation with your husband and his family for many years longer. How you are feeling and what you are going through is completely understandable in light of your situation.

[Jan]

Bev,

I am sorry if I can across as harsh. I worked in social services and the use of the term "retarded" just sets me off. It seems to be used as a playground taunt or a negative more often than not, so when professionals use it or especially when the newspaper uses it, I just cringe. I understand now you didn't mean it in that way.

My husband left me when I got sick. I don't want that to happen to you.

You can imagine what a bind that left me in.

I just don't want anyone else to lose people in their lives due to their illnesses. My husband was passive aggressive. He basically treated me so poorly that I had to ask him to leave. He wanted to leave, but knew it would look bad to leave a wife because she was sick. He was a coward. I didn't like who I had become when I was with him.

Life ***** for caregivers. Just as we wish we could run away from our lives, our care givers actually have that option.

And you can't make other people change, or make them do things for you.

It is so hard to have to ask for help, and then when others don't help, I found it just humiliating.

It is not hard to understand why so many of us are angry and frustrated.

[comfortzone]

Hug to you Bev Ray ~

For crying out loud dear - give yourself a break ok? Seriously - no where is it written that thou shalt be 'cheery' in illness, strife, pain, confusion, anger etc... Sure wouldn't we all like to be a Saint one day - and perhaps with the crosses we bear with dysautonomia and the rest of 'life' as it comes - maybe we will be... But till that time - please be kind to yourself ~ Maybe get a few of those amazing books by Jon Kabat-Zin about living mindfully or about mindfulness ... where you function to some extent as a compassionate loving observer of you in your strife - etc.. And for many being truly compassionate and loving to yourself is a very hard practice ... but I hear it's worth the 'training' so to speak... for life is full of 'moments' and we can miss so much of it when caught up - as you seem to be now - in the flurry of chaotic and sometimes catastrophic life events....

And if in observing yourself you see you are angry, blaming, frightened and for heaven's sake "human" - understand that that is our condition ~ it's how we are....it's part of 'us' - just as is joy, selflessness, loving-kindness etc...We are not our thoughts or feelings or emotions - we are amazing people.... you are an amazing person.

Surround yourself with the supports you need - whether it's additional helpers or caregivers -- or whatever it might be - some kind of healthy diversion from the routine - get creative....& never say never - except to say you'll 'never' give up.... Never give up loving, never give up hope for a brighter future, never give up joy and laughter and the praise of the myriad of gifts given you in a day. Sometimes it's the little things - rustling wind through tall trees, babbling creeks, amazing storm clouds, babies smiling - the smell of something wonderful in the oven...

You are so much more than your dysautonomia stuff - you are Bev Ray and that is absolutely wonderful.......all of you. So forgive yourself and move forward to your next new day ... use your intuition or prayer or counseling or reading - whatever your helps are to guide you in how to resurrect from this current difficult time - nothing stays the same - better days are ahead - for real!

[Noreen]

Bev Ray-

I understand why you sent the e-mail and it was long overdue. It would be nice if the sibs helped for an hour or two a month. Your husband's reaction will blow over with time.

I did want to mention that you should make note of what is going on when you get these feelings/symptoms. If you are standing, that puts one type of stress on your ANS. And remember, you are not just standing- you are listening, looking, breathing, etc. - simple things that others take for granted can't be for those of us with dysautonomia. Try and analyze what is happening and see if any modifications help - like not talking/having a conversation while standing, avoiding loud noises, etc.

Dysautonomia can breed desperation due to all the uncertainty surrounding it. For those of us who have had professional lives and are used to using our brains and research skills when confronted with a problem these diseases can be especially cruel. If you remember "Flowers for Algernon" it is like being Charley Gordon after Algernon, cruelly remembering the brilliance that once was but unable to access even a fraction of it. The variability of this condition is what is so hard to take.

Cut yourself some slack and be kind to yourself. Remember to breathe.

noreen