I have a chronic illness. How do I get my husband to support physically and emotionally? I feel very alone.?
I have been sick a long time. I was finally diagnosed with IC (interstitial cystitis) in 2000. I have also been diagnosed with chronic fatigue syndrome, IBS, fibromyalgia, and have all the typical symptoms associated with these disease groups or syndromes. I have the rarer type IC with Hunner's ulcers and all treatments have failed. I even have a sacral nerve stimulator implant, which is ineffective. My own urologist and family doctor have told me there is nothing more I can do now, except to manage the pain or have my bladder removed. My family is firmly against this. I am on lifelong medication, including antibiotics. My husband married me knowing I was sick. I also am a registered nurse, so I have been relegated to managing my own care, doctor visits, ER trips, etc. I have a two teens, one who has been in trouble with substance abuse (taking my IC meds, which are now locked). My other child has ADHD and depression, and always worries that something will happen to me (will Mom die?). I am, frankly, very depressed. I am always hurting inside my bladder or in my muscles. Because you can't SEE the illness, it is hard for my loved ones to empathize and understand.Everything(cleaning house, paying bills, getting groceries, cooking) is left to me, and I have given up trying to do it all. And as a nurse, I know people do not want to be around a sick person all the time. I am at the end of my rope. I asked my husband to please stop blaming me (I have a hard time complying with my IC diet, therefore my husband acts like I am doing this to myself. I did not give myself IC). I have asked him to get us help around the house, to call the doctors, to tell them he loves me, and he wants an answer, and what can we do? Even my parents don't understand. I don't WANT to be my own nurse. I NEED him and my family to speak up for me. I am so tired. I am crying right now. I don't think I will live a very long life. I have just gotten over a pseudomonas infection in my diseased bladder and am more tired than ever. My weight has crept up. I tend to be short with my family (because I am frustrated); in other words, I am not coping very well. What should I do?
Thanks IRB. I have been down that road already. I am on an antidepressant. I even have a "Happy Lamp" to help with depression. I know it is perfectly normal to have depression with chronic illness. I am just very alone in dealing with my ilnness. Thanks anyway.
MANNY- Yes, I DO believe in prayer. I have prayed, I have been annointed in oil, people have suggested that this may even be a result of sin. Oh, and I had a group of people at a church gather around and demand that any demon come out! I was too terrified to speak. You can see what good church has done for ME. I do, however, love God. People just don't understand.
YOGI- I feel for you. We live in East Texas (the sticks), and medical care is subpar. I can't tell you how many times I have driven myself to Houston or Galveston trying to get some help. I am specifically looking for a urologist who does bladder nerve ablation (destruction of the nerves so I can at least not FEEL the pain). My urologist won't do it and says I have to locate a urologist at a teaching university that might do it. Mayo, UTMB, Baylor don't have this type of surgery available.
I REALLY appreciate all of the immediate responses. I had to laugh a little, and THAT was great!
It may help to know that my husband is 16 years older than me, has never had his own child, and also, I was a big breadwinner financially, until I had to quit full-time because of the disease progression. I didn't think any of that would matter, but maybe it does.
Public Comments
1. See a shrink. That might help.2. its really hard for someone to look at the person they love teh most in the world and realize they are sick and you will never lead a normal life.
I personally think you need to seek counselling to learn coping skills, and to reevaluate your life, what is happening and where it is going.
Maybe a fmaiy meeting is in order, where you need to show them what you have written here, sometimes people need a reality check.
I really hope things start to go better!!
3. I am so sorry that this is happening to you. I think the best medicine is to be spiritual. I am not a religious fanatic, but I know i put all my burdens to God and he has definitely helped me with my past issues...ie, lost my mother & sister 23 days apart Nov 07, and I was a caregiver to both.
If you don't believe in prayers, then I guess you should go seek professional counselling.
Good luck to you and God Bless You, you are in my prayers.
4. my mom has ms and it too awile for my dad to get over it, and sure they fight a lot because of it, but i think he just needs a little time to think everything out and get in reality
5. This sort of makes me mad. If you marry. you MARRY. you must be there for the good and the bad times. Shame on him.
6. Go to your church and ask for help. As a church community it is each members responsibility to carry the burden of a sister or brother that is in need.
7. I can see all the sadness,pain in your letter . hang in their they will come around may be you should have your bladder out I know someone who has a bag and you can't tell she has one that's if it will make you life easier. Taking all those pills could hurt your liver. I also know that it would be hard to have a bag if you over weight.
I'll pray for you keep smiling.:)
8. I can see that you need support and to even know that your husband was tuned into the situation would help you a lot. You have a large burden, and it's not easy to bear alone.
May I suggest family therapy or relationship counseling, as these people are experts in inter-personal relationships, and can help define specific issues and plan remedial strategies. This will help, if he is willing to try it.
Your husband may simply be going through a phase of denial, not wanting to know the gravity of the situation, especially since it concerns someone he must love dearly, even if he has trouble showing it in all the ways that are meaningful to you at this time. He may also have formed a reaction to your condition, even on a sub-conscious level and may be 'magically' trying to see positive for himself in the situation by "betting himself" that everything will be alright if you are able to tolerate the condition alone. This is hypothetical of course. But he may be saying: "If I just see that she can cope, it means I don't have to be as anxious as I am about what is happening to my wife."
Something you can begin to do immediately is to try talking to him about your feelings. Invite him to share his too. It's not easy being the patient; and it's sometimes very difficult to be related to the patient, as much as you love them with all your heart.
9. Sit on him and tell him that you need him to be a MAN.
Use tact, but he'll get the drift. Being your NUMBER ONE ALLY and best friend through this is his MANLY Duty!
Print this out and hand it to him.
10. I can sort of understand how you feel. My wife is also an RN and works on a spinal cord and has for the last two yrs or so. I spent 20 yrs in the USMC and upon my retirement I was told (since then had then removed)that i had two frontal lobe tumors(menigomags sp) after they were removed back in 96 thing went along pretty good. Back then I felt like if i could just run and kept on running that i coudl in fact out run my black cloud. If I was 2 stop it would all come rushing up 2 me. I was not running just in my mind. I went along pretty good until 05 when I had another one t which it was also removed. Great now I can go on with living. Wife and I went on a crusie just b4 surgery, it is rather hard to enjoy when you are facing major surgery upon return. But I did cope with it. On one of my follow ups they found another one not one but two . One was back for the third time(damn the luck)well this time the gave me the gamma knife and I just had my yrly follow up and all is clear. Thank God for that. Since my 1st time in the barrel I feel as if I'm treated like a patent. I'm not I'm a person the same as anyone else out there. I have been black balled so to speak. She says she still loves me, i sure do her. I have been told more than once that I should have left long time ago. But I'm not one to jump ship when the seas get ruff. I spent 20 yrs in the Marines and 23 yrs been married. Seen way to many family and friends just say the hell with it. try and live as best you can for now enjoy your kids they will been gone b4 you know it. I'm not able to take long trips, had always wanted to spend time with our grandkids when they came along, one is two this month. Our sex life has been a none thing only with me and my fist for the last three yrs. We have slept in seprate rooms all this time. She is always at work it seams. I also have IBS, a tumor on my liver none operative, one on my spine also none operative, blood clots, and then tose rightes borthers kept noseing around. Wife and our youngest went to see them in FL. I had to stay in the rear with our other child to which we do not get along at all he is 19 an has all the answers like all teens. then why does he get so many tickets? He has a chip on his shoulder mom kisses his butt and he only cares about himself most of the time. I can only wise you luck look for the good possative things in life not the negative. Is ther any kind of support groups in your area?
11. I just came across your post by accident and can completely relate to how you feel. I have in the past had ME, which after a few years I recovered from. Unfortunately, Six months ago I was diagnosed with Glandular Fever, which I am only now recovering from.
Throughout my illness my husband has been pretty useless and unhelpful. For some reason he can't handle me being ill which in turn makes me feel useless and guilty. Also, I am a mother, so any energy I do have has to go on spoiling my child.
Many children have chronic illnesses and you can't get more innocent then them, so rest assured your illness is not due to sin. What I have felt though, is suffering does bring you closer to God.
Also, I'm sure you've heard it all before, but eliminate sugar and eat plenty of fresh fruit and veggies.
