Youngish Spouse- Chronic Illness
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Anonymous
He probably has his eye on a replacement already. |
Anonymous
| OP, I hope you and your spouse and children can find a way to manage what is clearly a heavy burden for all. Very sorry all of you are going through this. I hope venting on an anonymous message board is just a fraction of the support systems you have. |
Anonymous
| Do you help your spouse do all the things to help manage it--anti-inflammatory diet, no alcohol, good sleep, etc? I think with vigilance you might not be on the opiod rollercoaster to such a great extent. |
Anonymous
New poster. PP, I'm so glad treatment is working for you! I came to post to OP that since OP mentions the spouse was only "recently diagnosed," the journey with actual, focused treatment of RA hasn't even truly begun yet, but the OP is ready to give up. OP, you're reacting to what has been your past, and it's definitely been difficult, but can you take a step back from the emotions and see that once your spouse has an actual diagnosis, actual treatment can begin? Not just endless testing and pain? Yes, the treatment will be lengthy; it will be lifelong for your spouse and therefore, for you; it may take more than one try to find the right medication or other protocols that help your spouse, so things won't magically be just fine as soon as your spouse has a first prescription in hand. But you are surrendering now based on the difficulty of the past years--not based on your spouse having RA specifically. Your spouse, like the PP above, might find great relief and some return to a normal life now that there's an accurate diagnosis. But you will not be part of any of that regained happiness if you dump your spouse now. OP, I strongly, strongly suggest you contact the Arthritis Foundation (www.arthritis.org) and ask about support resources for spouses of RA patients. Pursue it. If you live in NOVA, try the INOVA health care system for free support groups--they might have one for spouses of chronically ill patients (RA or not). You can't see it now but you are not alone--your anger and resentment are felt by many spouses of people with chronic diseases and you could really benefit by hearing their stories and sharing with them. There is surely an online support group for spouses in your position. You'll find you are not the first to want to divorce, but you will also find people who chose to stay and can talk to them about why they stayed. Meanwhile: https://www.everydayhealth.com/arthritis/rheumatoid-arthritis/married-living-with-rheumatoid-arthritis/ The article above is a bit simplistic and it is aimed at readers who themselves are the RA patients, but the advice--communicate, communicate, communicate, and get outside help--apply to the caregiver, too. I get that you're angry but also, I think you're not looking ahead at the fact your spouse could be doing much better as the PP above is. I'd sit down, remember why I married spouse in the first place, and commit to getting assertive with the doctors about treatment to give spouse a better quality of life so you all can have a better quality of life. And please -- take time to find a support group online or in real life. There are people out there who have stood exactly where you're standing now and they are better equipped than anyone else to talk to you about this. |
Anonymous
This has been my father's experience caring for my mother for the past 40+ years. Her official diagnosis is RA, but there has been no treatment that has been effective, or maybe they've developed such a co-dependent/caretaker relationship that it wouldn't even matter at this point. I wish he would have left her because it's been a miserable existence for him and thus for all of us. I think she would have been better off having some other kind of help. |
Anonymous
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I'm usually down to pile on an OP who thinks they are in the right and doesn't realise that TATA.
But this sounds like an agonising situation and I wish everyone involved the best. |
Anonymous
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I (SAHM) have chronic an auto-immune illness since my late 40s. Its been 8 years for me. I have actually improved a lot from being bed bound to being fairly active now. I do all the cleaning in the house as well as the laundry. However, DH has taken over the cooking and kitchen completely in addition to being the sole provider. Thankfully, I have been able to take care of my kids as well as their schooling. I also lucked out in my worst sick years to have an hourly cleaning lady who helped with many things I needed done.
My own experience has been that if your household is running smoothly (clean house, laundry done, kids looked after, kids doing well in school, bills paid, paperwork taken care of) - even if it is being done by paying and supervising someone else, the other partner is not overwhelmed and resentment does not build up. It may be privilege and good luck, but for my DH it was truly "for better or worse" and he really had a lot of compassion for me. I am sure I would have been really angry if I was in his shoes, but thankfully he is a chilled person and does not get perturbed easily. He also did not think that it was a lifelong ailment. He was very sure that once I became menopausal it would become better. Somehow, it did. |
Anonymous
I don't think 5-10 day spells 2-3 times a year is special needs and unrelenting. How different is it than a spouse who has to travel for work or works opposite shifts? |
Anonymous
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Ok...so I am in the unique position of having RA, being the primary parent, working FT, and having an addict spouse:
1) An RA patient taking opioids every 3-6 months is not an addict. It's a somewhat common short term solution to get out of excruciating pain while getting other drugs (steroids, biologics, etc) up and running. I take opioids for a few days, and then stop, and get back to life, until the excruciating pain comes back (in my case, I usually flare every couple years or so). My alcoholic spouse cannot start drinking because then he cannot stop, and staying perpetually drunk through whatever means necessary becomes his only goal. It's completely different brain chemistry. 1b) Now that you have a diagnosis and start a treatment, the opioids will be used less. 2) With the right drugs, people with RA can live relatively normal lives. I work FT, exercise, volunteer, and have 75% custody of my kids. 3) I understand what it is like to take on all the household/parenting burden. I did it in my first marriage, so that my then-spouse could pursue passion projects. It's draining. And I had full-blown RA at the time. I will say life got significantly better and easier after we divorced. So I get it OP. 4) But having been through a divorce (with a chronic illness), I will warn you that there is a potential for your ill spouse to be awarded alimony. And it may be deferred, which means when he or she decides he or she can no longer work, he or she can start receiving the alimony. You probably don't want that dagger over your head for the next 30 years. That's in addition to child support. Since you don't seem to be outsourcing much, I am assuming you probably don't make a ton of money, so CS + alimony will probably hurt. You may want to pay for a consultation with a family law attorney, just to get the lay of the land. 5) I second (third? fourth?) the PPs who suggested counseling. For you, for your spouse, and maybe together. It sounds like you are in crisis, and a professional can help you navigate it. Good luck! |
Anonymous
Omg just stop. You are entirely clueless. Just shut up. I’m a new poster. I am youngish, with kids and I also have a spouse with incurable chronic illness. It’s a million times worse than being a single parent. You can’t imagine. Don’t dismiss our feelings when you absolutely have no clue. |
Anonymous
The RA medicines are great. What medicine is your DH currently taking? They are even good for psoriatic arthritis which my DH has. It was night and day when he started take Embrel 15 years ago. He now takes Humira as it does better for him. When I say night and day, it was like my old DH emerged. The energy he needed to fight the pain was no longer needed. |
Anonymous
What a sensible response! |
Anonymous
Truth |
Anonymous
RA can be all over the place. My friend with MS runs marathons. Should I think all MS patients are capable of running a marathon? My mom has used 7-8 medications to manage her RA and is still in horrible pain every day. You don’t know where on the continuum you will fall with these diseases. I have lupus, take two pills a day, and don’t feel impacted by it at all as long as I stay out of the sun. |
Anonymous
Where did OP say she was a woman? Sounds like a man posting. |