I have not yet posted in this area but think I would like to share. It's not a nice part of being sick, in fact it's maybe the worst. I am thinking of relationship problems for those who are chronically ill. I have a multitude of auto-immune issues. Hypothyroid, Addison's Disease, Sjogren's Disease, IgA deficiency and Lupus. Then this spring was diagnosed out of the blue with ITP. I have done well for years and years with all of it and I am a happy person who is grateful for everyday and what I can put in it. I have been on prednisone for 25 years, but in a small replacement dose of 7.5 mg per day for the Addison's. I have never had to do the prednisone in the doses I have had to with the ITP. I can say in all my years, with all my stuff, this has been the hardest thing I have ever dealt with. I have been very, very sick. I look very, very sick. I work real hard to love myself anyway...and I do...just for putting up the good fight everyday. But there is something else that is affecting me now that I am not sure how to handle. It is about my relationship with my hubby. We are high school sweet hearts, married for 35 years. We do everything together. We have been through allot. The loss of both my parents to cancer, and his Dad from stroke, all very close together. We struggled as we are very family oriented. Then just when we were finding a new normal, in 2013 we then lost my brother, our dear friend in a farm accident. The three of us were peas and carrots close. Our own home built right next to his farm, the farm that belonged in my family for over 150 years. Well, you can imagine the pain and the battle, and we endure, we bought my family farm and we renovated the farmhouse and plan to move there to retire. It is a little piece of heaven. My brother is proud of us I know.
I tell you all this to let you know my hubby and I know adversity. We are not shrinking violets.
Until now maybe?? At least it's how I am feeling these days. I am very sick. I am noticing anger and resentment toward me. I have to ask for more help right now. I can't pull the weight I once did right now anyway. I have noticed it for a while and I have understood it, where and why it is there. But it's wearing in me. I am tired of being punished for being sick. I did not ask for any of this. I remember my wedding vows and wonder does he? I wonder if a man of 20 who hears those vows on that wonderful day can even understand them?
I am afraid I don't quite know what to do. I had to do groceries last night. I am afraid to ask for a drive there so I can do it most of the time. I do not trust myself behind the wheel when I am feeling this sick. For the two hours it took for me to do the much past due grocery shop I was treated so badly. I was forced to carry way too much, as he stood there like a fence post glaring at me in anger. I was treated like I had no value at all, as my original value is now gone. That of a servant that can't do their job.
What is happening here? I have described honestly how I feel, and it has not been easy to admit let alone write down. I adore the man, always have. He is a good guy, who is struggling. But how can he do this to me, now?
At home I spoke to him about it. He agrees his behavior has been wrong. He says he is scared. He is angry. I get it. But I can no longer take it, I am much to tired. I need to be well in everyway to beat this thing. I can't be if I am scared of being treated badly, feeling badly, and feeling guilty all the time. I did not ask for any of this nor can I change it.
Anybody else deal with this? In any form? What do I do? Thanks, Sandy Too
Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
Thank you received: 39
just a quick note - higher dose prednisone can make one "extra sensitive" to situations that they normally have no issues with.
I just recently had a conversation with my husband about how I "felt" when I was on prednisone (we fought over dumb stuff and my emotions where all over the place). I have been off prednisone for a couple years now and I just now had that conversation with him - I wish I had had it sooner.
You have a story then too. I almost did not post, it's like a tabooed subject. But you know there is only dark in the dark. I think there needs to be some light. Plus I am not afraid for me and my guy at all. Just wondering how to tackle this very difficult and important problem.
After last night, we woke up in a better place. For me, and my part I need to figure out how to let him know that no matter what it will be okay.
It is what my brother who called to me in my heart from where he lay the night of his accident. I searched the farm for him, and we spoke together in our heart, he told me it was going to be very, very bad, I began to understand what he was trying to tell my heart. I was devastated and refused to hear it, but he just kept saying, "he was so sorry, and that he needed me, to come find him, but that I was strong enough and that it would be okay". I argued with him as I ran and searched, and said to him, "no! how can it be okay? how can you say that!?" I would never agree to that.
It's just only been three years, since I lost my brother, it is like yesterday. But now I think I know what he meant, even though I am not ever going to be a big enough person to admit he might be right. I cherish that conversation with everything fiber of my being.
So when I say I need to relay that message to my hubby, that's what I mean. But if I cannot bring myself to admit that night might now be alright, how will I ever get my hubby to at this point with what we are dealing with now or in our future? He needs not to be scared how on earth does one accomplish that? He needs not to be angry, again how does one do that?
How do you let someone know to cherish everyday, and laugh and love and share and experience as much as possible no holding back, sick or not, when they are scared stiff to move?
can I read your manuscript? . Thanks, Sandy Too
Sorry for the the hardships you have had to endure and the current situation. You must realize that you are indeed incredibly strong and give us hope to be as strong as you considering your circumstances. From what you have typed its evident that your soul mate is a reflective, self aware man which is ever so important for us males. You both need to know its normal and ok to be angry, resentful, frustrated etc and let each other feel that because ALL of US would be that way in this situation. But what you have between you in something hardly any of us are lucky to have and that has to also be the focus.
My levels dropped and my wife will begrudge me moaning on about it and me "being a baby" which is so true. She will feel that way but she will also comfort me and take care of me, but if I'm really being a baby then I need not be encouraged in that way but given strength like I have when reading your post!
I think the right thing you did was talk - you need to keep talking and keep the lines of communication open. If you both need to seek extra help via a counselor then do so!
I know 3 wonderful women who stuck by their spouses and were fantastic caregivers. One husband had diabetes and IBM [an autoimmune disease that ate his muscles], he ended up in a motorized wheel chair, couldn't walk & could barely use his hands & later had both legs amputated at the knees. The other's husband had to have a colectomy - he couldn't take care of himself, she had to do everything for him. The 3rd, her husband had cancer and had to have his bladder removed. These are 3 of the most loving, caring, selfless women I have ever met!
The fiancé of an ITPer I know left her once she was diagnosed with ITP. I do wonder if it is easier for females to be caregivers than for males to be.
I feel the main thing is to keep the line of communication open - know how each other is feeling - talk talk and talk some more. I've got a lot going on health-wise and my husband, bless his heart, does hear about it when it gets to be too much for me.
I don't know why this subject would be taboo - it is something that needs to be dealt with not swept under the rug.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2369
Sandy - I think my story is much different than yours. I have problems going on that thankfully, you don't. Anything relating to illness and lack of understanding is only a very small part of the story. I should have been more clear. I've been writing this for two and a half years...I have 159 typed pages so far. It just keeps getting more interesting. Not a good thing.
I lost my sister five months ago, so I can relate to that too. Too much going on at once can put a strain on most marriages. I hope things get better for you soon.
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