Need some advice

[Iron Hide]

I am a bit lost and feel totally lazy and guilty right now. I would like some advice if possible. I am a male in my mid 30s and i have been diagnosed with hypothyroidism about 9 years ago, and addison disease about 7 years ago. I did well for the first 3 years with addison. I was working full time and doing a lot of activities. 4 years ago I got sick and I never really recovered. I'm in a lot of pain and fatigue most of the time. Leg pain, lower back pain, eye pain, neck pain, headache, sore throat, numbness in my hands and more. I tried different type of full time jobs to see if it would help me but every time I quit or i have been fired cause of I was taking too many sick days because of pain and fatigue. I am working part time for the last 6 months and I do a bit better like that. I have been diagnosed with cfs/fibromyalgia two years ago and my family doctor at that time. He talked to me about going on disability insurance. I didn't have an insurance at work and my spouse income and assets was too high (and still is) to get any public disability insurance. My spouse never believes in the diagnosis of cfs/fibro and pushed me to change my family doctor, which I did 6 months ago. In her mind there must be a remedy to feel good all the time and be productive again. She is now pregnant and of course she is expecting more than a part time income from me. Yesterday she totally destroyed me saying I am lazy and that I didn't want to work and that is crazy that I do not try to make more money for our family with our 1st baby coming and I wasn't pushing my career forward. I understand her frustration but what she told me Yesterday destroyed me. I didn't know what to say. I don't know what to do. With the baby coming it cuts my option. I am in a total panic today and really wondering what to do. Before cfs/fibro I always worked very hard. It is the first time ever I write a post on internet. It's hard for me to Talk about my health.

 

[sunkacola]

Hi Iron Hide,..............I am very sorry you are going through such a hard time.

One thing that would help me (and maybe others) to read your posts is if you would make paragraphs. A huge block of text is much harder.

I notice that you say "with the baby coming it cuts my option". What option are you thinking of......were you thinking of leaving your wife, or do you mean that you now feel even more pressure to work full time?

Either way, you are under a lot of stress and pressure. So first, my advice would be for you to find time in each day to do something truly relaxing just for yourself. I don't know what that would be for you.....a hobby, a long walk, meditation, yoga, reading a book, just sitting in a park somewhere.......whatever you can do that would be peaceful and quiet (and NOT "productive"), and would work to lower your stress.

Stress increases the problems with fibro and many other things, so your very first priority is to make time every day.....as much time as you can, but even 10 minutes would help.....to lower your stress.

Next, I would suggest that you write your wife a letter in which you say to her all the things you need to say. Be careful.....write it, then sleep on it and re-write it the next day. Maybe take a few days to get it right. Be kind and loving in the letter, but ask her to listen to your concerns and to take in what you have to say and take you seriously. Let he know that it hurt your feelings when she called you lazy, and let her know you want to do your best but are having a hard time.

I say write a letter, because that way you will get it all said without fear or interruption. At the end of the letter, invite her to sit down with you and have a meaningful talk about all the options available to you both.

You can also maybe spend some time researching what kinds of work you might be able to do with your skill set. I don't know what kind of work you have done, but perhaps there's something that pays more and you could get more training or something? There might even be a program where you live. If you could find something that you could do part time for more money that would help.....or something you could do from home on your own schedule. I have done both of those things and it really helped a lot, because there is no way in hell I could work full time any more.

I wish you the best of luck and will help if I can.

 

[Iron Hide]

Thank you for your reply Sunkacola. It's so appreciated. I actually work part time and I run an online business. That online business doesn't make a lot of money for now and I have a job for about 20 hours a week. I have to take some sick day once in a while

I can understand my wife's frustration with me. I sincerely do. I am frustrated myself with my situation. I do try to walk and workout when I feel good enough. Thanks again.

 

[Sagey]

Hi Ironhide,

I'm sorry that your wife doesn't believe your diagnosis.It is real and your doctor wouldn't have mentioned it ,if he hadn't had experience with it.

Your wife might be scared and stressed herself.Realizing that her husband is sick, can be a difficult situation.She might have heard negative things about Fibro and maybe needs to read information about it.

Sunkacola gave you good advice.Stress can make Fibro worse.So try to relax and deal with this the best that u can.

The best thing to do is to pace your physical activity and don't get to the point of overdoing it.Because once u get to that point your body may react negatively. You will get extreme fatigue and pain all over.


Its important to make a treatment plan with your physician to help relieve some of your symptoms.
Eat healthy and find a hobby that u enjoy that might keep your mind off of things,and decrease your stress.

Wish u luck


Sagey

 

[vickythecat]

It is key to have supportive people around us, so with your wife not 'believing' or accepting your new reality, you will find yourself in a deeper darker place every day. So if I were you, I would first focus on getting a 100% diagnosis. Then talk to your wife about it. Then try out all medications out there. Some work real well, some don't, most take a long time to work, so don't expect miracles, but keep an open mind when it comes to medications. Then try alternative therapies - for me, for example, doing basic yoga and stretching moves is a key to feeling good. If not physically, mentally.

You have to communicate real well with your wife, especially with a baby on the way. If possible, take your wife along to a doctor's appointment or a support group. Have her read and research fibro/cfs, so that she gets a better understanding of it. (and how these conditions are real - medically proven as invisible as they might seem.) If she knows how much you are suffering, not just physically due to a chronic illness, but how it is destroying your dreams/aspirations, I am sure she will start to become supportive. Then you can both be supportive towards each other. Having a baby for any family is a huge deal, maybe more for women than for men, so you have to be very supportive towards your wife as well.

You are in this together, and I am sure you want to give the best to this new being who is on the way. But in order to be able to do that, you have to first treat yourself well, respect yourself, love yourself. Learn to accept your new limits, work with them/around them, try different treatment options, find things you enjoy, focus on your own well-being first.

For the future, discuss now what your financial situation will look like because very honestly, there is no miracle cure for fibo/cfs, so you have to accept your new reality (which includes your new financial capability) You can be a stay-at-home father and work from home, so that your wife can bring more money in from her full-time job. Look into government schemes, if there are any, supporting parents with chronic illness/disabilities.

 

[Iron Hide]

Thank you all for your replies. I will listen to you and try to communicate better and try to take more time for myself.

It is so hard for me to communicate about my health because I hate to talk about it. I usually just stay quiet when I don't feel good. It took me everything to write on this forum.

Thank you again, it means so much for me, sincerely.

 

[Iron Hide]

I had a discussion with my wife today and it didn't go well. Trying to explain I was doing my best, which I think I do. I work as much as I can (about 15-20 hours a week) plus I am trying hard to push an online business.

My wife is a very very good person, she makes a good income and have a good retirement fund and really worry that don't have one anymore.

She doesn't understand the way I feel. The pain and the deep fatigue and I have for years. I truly understand her frustration regarding me and I am frustrated as well. I used to be very career oriented and a hard worker.

Today she said she thinks we should split of that is my best. She is pregnant so I didn't say anything. I am really out of options here. This should be the happiest time of our life waiting for our first one and right now I'm in a total nightmare.

I feel terribly guilty about not be better for her. I wish I would be my old self. I really don't know what to do. So angry at my health.

 

[sunkacola]

Iron Hide, you have my sympathies, completely. I am so sorry to hear this. My heart goes out to you.

Only thing I want to say is that if she is leaving you because of your health there are most likely other reasons as well. If she did not want to split from you anyway, she wouldn't, no matter your health one way or the other. People have stayed with their spouses through much worse things than what you are describing. So, I don't think that is her only reason.

that doesn't mean that ANY of her reasons are necessarily your fault. So try not to go there. Sometimes a marriage just doesn't last. If she is not truly dedicated enough to your marriage and to you as a person to continue with you and try to help you, then you may be better off without her. I know that sounds harsh, but it could be true.

If you are working 20 hours a week and starting your own business from home, that is quite a lot to be doing with this disease. Many people here cannot do that much. It is not your fault if you cannot do more.

I understand your anger and frustration, but again I want to recommend to you that you find something you can do to lower the stress you are feeling. I know, because I can get very angry too, that anger held inside will seriously aggravate your condition and increase pain. At least, it does for me.

Try really hard not to blame yourself. No marriage is only one person. It takes both and if one is no longer dedicated, then a split is best no matter how painful it is at the time.

Again, I m sorry you are going through this. I hope I can help.

 

[Iron Hide]

Thanks Sunka,

It's usually not my style to write about myself on a forum. It's actually my first time. I have to say your replies really helped me to keep hope and to not feel lonely.

When I see friends or family I usually try to be positive and not show any negativity so thank you so so much for taking time to listen to me.

 

[sunkacola]

Yeah, Iron Hide, I understand. I hide my problems from everyone. I don't have family around, but if relatives were nearby I wouldn't let on to them what a difficult time I am having, mostly because there would not be a good outcome from it if I did. In my life, mostly I have had to take care of myself and do things alone and that is how it is now.

I know how it feels to be at the end of a relationship that you thought would last for a lifetime. Been there, done that. It is tough, to say the least. But the truth is that it is better to be alone than with someone who is not supportive of you, or who increases your stress with criticism, badgering, or lack of kindness.

I don't normally write on forums either. But sometimes that is the only place to get an empathetic "ear", because it is a lot easier to deal with people online than it is in person.

 

[Peaceandquiet]

Hello Iron Hide,

I've been trying to think of a way to help you. Your situation sounds like a nightmare alright! As someone who has suffered the pain and life disruption of fibro and osteoarthritis and more for years, I can sympathise with you...it is hell. Understanding from others is rare. I can't work at all anymore and that makes me feel really lousy at times. I used to be a strong financial contributor and now I feel less than a person some days.

Having said that, I have also had a baby and an uncertain future during that pregnancy so I feel for your wife. Those pregnancy hormones bring out the fierce warrior in us sometimes and it's perfectly normal for her to be making that baby her priority right now. The thing is that if you love each other and want to be together then you have a great foundation to fight obstacles together.

If you make your best effort to not let the fibro rule here then I think you have a chance. If you can look after yourself as best you can to remain as well as you can then you may very well be able to make a successful online business or something in the future. The flares come and go but if you follow the advice from the smart ones on this forum and eat healthy food, do gentle exercise, get some sunshine etc. you might even go through some periods of feeling good about yourself. Check in here every now and then for some gentle reassurance.

To reassure your wife with positive thoughts about your future together will make her feel safe and she needs that reassurance. It's a vulnerable feeling, being pregnant but many, many people have done it with little or nothing in the way of money. Your future earnings might be more than you think, who knows?

I wish you the very best ...sending positive thoughts.

 

[Tarm56]

First go and get a second opinion as soon as possible. A diagnosis of CFS/Fibromyalgia is not the end of your life. Your wife sounds upset that you are not doing all that you can to help yourself. She's worried about being left holding the baby so to speak. There must be more to it then just wanting to split because you're sick as if someone loves you it is for better or worse. Working on becoming mentally strong is what helps people cope with this disease.