Saturday, November 14, 2009

Dear Tom's Wife:

You are brilliant. You wrote on your blog:

we are not alone. just sometimes lonely

It doesn't matter how busy I keep my self - how much I get involved with other women, other families, my family, my friends....I still have moments while I am so lonely I could die.

While I know my sisters all understand what I am going through.....they haven't walked a mile in my shoes.

While I can go see a therapist, join a diabetes support one else has lived what I am living.

But while I am lonely - at least I know it will end when I surround myself with other people and for a few short hours....I can forget "this" life as I step into "that" life. It does give me a reprieve. It does help.

What I truly hate the most are the professionals who tell us what to do to make this work.....yet they don't live with someone who has diabetes....ok, scratch that. They don't live with someone who has diabetes and doesn't take care of themselves. Huge difference! I can't fathom how you can help someone else when you haven't lived the experience yourself. Books are books. Theory is just theory. Don't tell me to give him sugar until you have been been throught the harrowing experinece of him passing out and you can't possibly get a single thing in his mouth! Can you tell I don't have much use for professionals who think they have all the answers when they haven't lived the experience.

So, unless one of us wants to take time out and return to school - I doubt there's any real help for any of us except what we can gain from each other!

Love the idea of meeting with other spouses.....but here's the problem with that. I have to remain anonymous myself in order to keep the "peace" here. If he thought for one second that I blogged....or that I was meeting another wife....I would have to leave for sure. Sad, huh? I'm going to guess there are several of us in the same position. We are not allowed to talk about this disease, not allowed to mention it, can't discuss it with our families and friends unless we do it in utter secrecy.

But I totally agree - some days, I wonder how much any of us can take.

Hugs to you, Tom's wife - and to all the other wives.


even more comments......

Wow! I've been away the past week and there are loads of comments, so read on......

Neil wrote:

It is unfortunate that diabetes causes so many family issues. Growing up, life was a not fun until my mother got her diabetes under control. I vowed, as I stated before, I am not about to allow diabetes to affect me, my marriage or my children. I love my family dearly, and I know those three young children ages 11, the twins, and my oldest daughter age 16 really need me to help them succeed in life. I know my wife would be challenged to raise those children on her income alone. I try to work out 10 hours per week to stay extremely fit because I know my physical health is just as important as my mental health. I personally believe my wife has a right to have a husband that is physically fit. I don't have a clue why most men haven't figured it out that their wives want a fit husband, just like husbands want physically fit wives. I was recently studying an article called The theory of brain wave vibrations. This theory essentially concludes that the brain energy of those we are near affects our own outlook. So I conclude that if a man or a woman is married to someone who acts irresponsible, that will negatively affect our own emotions. Instead of going to the level of the other party, we ought maintain a positive outlook and ultimately, the theory indicates, the other party will make positive changes. I have seen this happen, but it does take a great deal of patience. And of course, we have no guarantees the other party will ever respond.

Neil, I do think you are the exception to the "rule". You know, the Bible tells us that the "2 shall become as 1" when we get married. I wonder if there is any connection to what you have written above. But at the same time, I'm still going to go with "this is not my disease" - while I am affected by it 24/7 - I don't have it

Anonymous wrote:Hi to all ...

Haven't written in some time, even though I follow your blog ...

Life's been a little tough around here. My husband has severe charcot and had to have surgery on his right foot (we are now 7 weeks into recovery and it has been tough to say the least). One week after his foot surgery, he got a call that they finally had a kidney for him (he has been on the transplant list for 5 years) Of course, he had to decline the transplant due to the fact that his recovery from his foot surgery will take approximately 6 months (obviously a great disappointment). However, now he is totally reliant on me and his kids, his weight is coming down, his sugars are under control, his phosphorus is great, even too low! So just so all of you can see, there is a light at the end of the tunnel ... just sometimes our "blockheads" take a long time to see what they need to do!!!!!!!!
Go figure !!!!!!!!!!!!

Anyway, as far as MIL ... I also have that issue ( I know it's all my fault ... blah, blah, blah ...)
My MIL in really quit ill at this time and I feel really bad about that, but still, I did not give her son his eating disorder ... she did!

I know I am just running off with all my thoughts ...

Just remember, it is his disease, we are only here for the ride (thank the Lord above for that gift)

Well, I am sorry to hear that he missed out on the transplant, but encouraged to hear the he is improving. I hope it keeps up - for your sake and that of the kids. Charcot is just something terrible - I think it is just completely crippling. I hope the surgery is a success long-term.

As for the "dear" MILs - not sure why they have to be so critical. We just married the guy - we can't change him and sure as heck didn't make him who he is today! LOL!

Lisa said:

Its somewhat reassuring to know how many women feel the same as I do. What has been very difficult for me to deal with is guilt. I am always feeling guilty about something; resentful toward the disease, my husband, what I am missing. I hate to sound like that, and would never say it verbally, so this is a good way to at least express it. A good part of this disease can be prevented, or at least kept in control. When I know that my husband is not doing what he is supposed to do, I feel he is being very selfish. Then I feel bad that I am not the one that is sick, that I should try to understand how difficult it is. I am still young and want more. Thats when the guilt hits. Lisa

Oh Lisa - just put all that guilt right out of your head! It's NOT your fault, and it's NOT your problem to "fix". You haven't done a single thing to feel guilty about. It's completely natural for us to feel bad about someone we love being so ill. But it's certainly not our fault - thus no grounds for guilt. I think at most we can feel compassion - perhaps- but I even wonder if that is warranted since they are simply making it worse by their own actions.

Ladriana wrote:

I feel I know you all. If I take pieces of each of your experiences I can say it's my experience. My husband was diagnosed with diabetes 20 years ago, he took his pills but did not keep any diet. Overweight, stubborn, he used to eat one bread per day. Starting from 2007 his health deteriorated fast. Few eyes laser treatment, eye surgeries, glaucoma due to steroid injections, and late 2008 kidney failure. He is on dialysis since April, not doing well (4 times a week 3 1/2h with one time 3h only). Tired, not feeling good, I never know how he comes home. He is malicious with me and with the kids (I have 2 boys) some times. He is a manipulator too, he knows to say rarely how grateful he is, but most of the time he refuses me anything I want. Raises his voice, and he can be mean. I had my share of low sugar, paramedics, having to drive almost every day to the hospital. He is 60 and we both do not work (somewhat retired). Now on dialysis is has to keep a certain diet, eat small meals 3-4 times a day, restricted drinking, etc. Of all those he does what he pleases. He was a big eater, now he has no appetite, so he eats sometimes only twice a day. He cooks, so he eats what he want, when he wants. It does not matter what I say, he has to come to his own conclusions. I have my moments when I feel he is bringing me down with him. I am glad, I am not the only one feeling that way. I am glad I found your site and that I no longer feel alone.

Ady, It truly pains me to read what you wrote. Please do not let him take his problems out on you. Don't even let him hint at being mean to you. It is not his right. And maybe you just need to tell him that. Or when he starts, simply walk out the door. Exclaim that you HAVE to run to the store to get something you forgot....make any excuse to get away from him.

I have found it they don't have anyone to yell at = they don't yell! Your own life is too precious to allow him to bring it down. And while you are not alone, I do think that if we allow them to treat us in this manner, it just continues. It's been 3 years since I told my husband in no uncertain terms that he could not talk mean to me, put me down, take his anger out on me....and while I have had to remind him a couple of has helped.

And I'm getting real good about "emergency" trips to the store. I'm an artist, so it's a great excuse - I need new blades for my knife, I have to have them right this moment.....I can make it up pretty quick!

Another anonymous wrote:

I'm so glad to know that I'm not alone, my husband of 18 years is a type 1 diabetic and it's taking it's toll on our family. The past two years have been extremely difficult and I'm not sure how much I can handle. Most days he can't get out of bed, check his blood sugar or take his meds. He has chronic kidney disease, diabetic gastroparesis and low testosterone. There are still times when I see the man I married and remember why I'm still here, but it sure isn't easy. It's nice to know that there are others out there that know exactly what you're going through.

It's never easy. Some days are just less hard than others. If it helps....I never know how much I can handle either. I just take it one minute to the next most days. Yet I am amazed at how much I can "take". My hubby is now staying in bed til 10 or 11 am every day. He hasn't tested his sugar in at least 2 years. He hasn't been to see his doctor in almost 9 months. But I can't make him go. So I just do my own thing. And yes, it really does help to know that we are not alone in this at all.

So, there are the comments and my feeble thoughts for the day. I'm hosting a 2 day class in my studio this weekend and hubby as sequestered himself in the master bedroom. All is well. However, I just don't know how any one human being can spend so much time in bed! The boredom of it would simply kill me. My "student" this weekend happens to be an MD in her other life. We are having some wonderful conversations - I do meet the nicest people. I wonder what I would do or how I would survive this if I didn't have my art.

At the same time, I have to wonder how much longer life can continue as I know it now. He's less physical, not seeing the doctor, not testing his sugar....How long can he continue on this path before something major happens? Well, I can't do the "what-ifs" in life - I just have to live my own life to the fullest every single day - regardless of the struggle.