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How do you NOT have a nervous breakdown?
DD will be 9 months old. A little over four months ago she was diagnosed with a blood platelet disorder in which her body produces antibodies that attack her platelets. A normal person has platelets of at least 150,000. On average, she bottoms out between 0 and 3000 every few weeks. The risk with platelets that low, although only about .5%, is a brain bleed. When they are that low she also bruises everywhere and ends up with little broken blood vessels all over her body. So every few weeks we go through a bunch of treatments, such as IV immunoglobulin, high doses of steroids, low doses of steroids, etc. She has been in the hospital four times, two of which were over a week long stay. She has also been treated outpatient several times as well, and then we go weekly to the clinic where she is treated (a 50 minute drive) for labs, see her doctor's, etc.
Although in most kids the disease is acute and often remits on it's own within 6 months, she is a very extreme case in that sometimes she responds to the treatments, sometimes she does not. Whereas it typically occurs in kids ages 2-10, she was 4 months (they believe it was triggered by her 4 month rotavirus vaccine). Our next step is probably going to be a low dose chemotherapy that there appears to be success with.
My question for you is - how do you not have a nervous breakdown? I have a wonderful, supportive family and friends. Our church and my moms group are amazing. I have had more meals brought to me over 4 months that I can think of. I have friends that will stay with DD (we are very cautious bringing her out b/c of immune suppression). I try to exercise at least three times a week and get out for an occasional dinner with friends. I take Lexapro. And yet. . . I still feel like I am on the verge of a nervous breakdown. Between trying to be a good wife, a good mother still to my 4 year old DS, take care of my baby, run back and forth to the doctor's for appointments and treatment, and the unknown of my daughter's medical condition I am ready to lose it. The constant up and down of her responding and then not responding, seeing her physically look so beat up, having to pump her with meds is just heartbreaking for me. I am so petrified that she will have a brain bleed and either die or become severely disabled.
I am constantly turning to my faith in God for strength and that is pretty much all I can do right now, but I just feel so depressed. Selfishly, I would give anything to have my old "normal" life back. I would give anything to not have to worry about kids on playdates getting her sick, but still wanting to go to give my son some normalcy. I would give anything to drop my kids off at the gym daycare regularly like I used to do with my son so I could maintain some sanity. Even though I get a sitter once or twice a week to try and exercise just knowing I don't have the luxury of being able to do what I used to is depressing. I would give anything to not constantly worry about her safety and what happens when she gets mobile.
Please give me any advice or encouragement you may have. Thanks in advance!
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Re: How do you NOT have a nervous breakdown?
I can only offer some virtual ((hugs)). That is a difficult situation. You seem to have a great support network and that is huge. You are doing everything right. I think everyone on this board would give anything to go back to their "normal" life, but you just have to keep trudging along. It may be helpful to seek some therapy for yourself to talk this out with someone on the outside.
I am in a similar situation with my now 14 month old. At 8 months old he was diagnosed with cancer and we are still doing chemo combined with surgeries. Things can take a turn for the worse at any notice, his cancer is higher risk of return, and he will need a transplant sometime in the future. I have to keep him away from people and germs with his weakened immune system.
You sound like you are doing all the right things. All the things you mentioned to help you take a break are things I am trying to do. It helps, but doesn't take the fear away. Or the depression. It is not selfish at all to want your 'normal' life back. And, you have another child to care for which makes it that much more difficult. I just wanted to say that I understand, and that I think you are doing everything that you can. Hugs! And, if you ever find the solution to your title question, please do share! It gets so overwhelming sometimes.
Hang in there momma! I've been in your shoes. Although DS' condition isn't exactly the same (still haven't had a 100% diagnosis in 14+ years), I've had that level of insanity, more than once, for months and years on end. IVIG and methopred (and oral pred) suck. Really suck. DS is back on IVIG, and it makes him sick for at least a day after. We've had hospital stays last months at a time, and I truly though I'd lose it, or fall apart.
Your support network sounds a million miles better than mine was (or still is). Maintain that, it will keep you afloat and sane. Keep doing things for yourself, it's not a luxury, it's a necessity. If you don't take care of yourself, you aren't much help for your lo. And know that it does get easier. It really does.