Constant pain

By Carrie Gibbens

1 min read

Two years ago, I got a serious infection from having a cervical epidural. I was admitted to the hospital and on a cocktail of IV antibiotics for two weeks. Then, once home, IV antibiotics for a few months, by district nurses. My family didn't understand then and still don't now.

Lasting effects of infections

Last year, the infection came back, but a thousand times worse, I had sepsis.
Again, kept in for two weeks and another cocktail of antibiotics. Once allowed home, I had IV antibiotics for 7 months.

I was on a biological injection each month which worked, but because I had two seriously bad infections, I had to come off. I am now only on gabapentin, which helps slightly. I can't ever have any biological help as I can't take the risk of having another infection, I wouldn't survive it.

My family doesn't understand

My family doesn't seem to care, or just doesn't want to know. My husband is diabetic and suffers from nerve damage in his legs.

Everything revolves around him, if my back hurts more than usual, his does, but worse. Whatever I may say that is particularly painful, he also has it, but again worse.

I'm expected to carry on like there's nothing wrong with me, but I just can't. My adult daughter and sons, do anything for him, but for me nothing.

I have been looking to put myself into a warden-assisted flat, if I need help it's there and I can get on with my days at my pace, without being moaned at or constantly asked to do things I find tough.

Am I being selfish, wanting some peace in my life?

I'm 60 next month and didn't expect to still be looking after everyone. My father-in-law lives with us too. He has leukemia. I also have to look after him and take him to all hospital appointments.

Am I going mad???

Very confused,
Carrie

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Lori.Foster Community Admin
My heart goes out to you, <inline-mention username="Carrie Gibbens" user-id="4493200"/>. No. You are not going mad at all. You have a serious autoimmune disease that can cause crippling pain and fatigue, yet you are expected to look after everyone else. It sounds like a stressful situation, which probably contributes to your PsA pain. Someday, your husband and father-in-law will need someone else to rely on. It doesn't hurt to wake them up and help them see that they need to make that transition now. You do what you have to to take care of yourself. The others will find a way to cope . You will not be much good to them if you can't function either. If you decide to remain at home, you might want to consider taking the hard line on certain things. For instance, you can stop taking your father-in-law to appointments and force the family to find alternative transportation. He is already living with you. You are doing your part. Are there other relatives to step in or can you hire an agency to take him? (Hopefully, one that he pays for.) Draw up a list for your husband of what you will and will not do around the house. He doesn't have to sympathize with your pain, but he does have to respect your judgment about what you can and cannot do. If there are things that are too much for both of you, agree on short cuts, like take-out meals or pre-prepared meals from the grocery store, or having groceries delivered or hiring a cleaning person. If he is willing, see a therapist together to work some of this out. If he is not, go alone. It will be good to have a third party you can vent to. I am sure the situation with your children is frustrating, but you cannot control them. You can only control your reactions to them. Right now, your reaction is frustration and stress. That is a normal reaction, but it is hurting you, not them. Therapy might help you with that, but you can also try such things as meditation to relieve the stress. I hope some of this helps and that you can start putting yourself first. Sending lots and lots of gentle hugs your way. - Lori (Team Member)
Vickie Wilkerson Moderator & Contributor
Hi Carrie Gibbens. Wow that is a lot on your plate to have to deal with on top of your own health issues. I agree with <inline-mention username="Lori.Foster" user-id="3297576"/> in that you have to look out for yourself. You are not going mad at all. We feel your pain. You cannot properly take care of others if you do not take care of yourself first. I get it because I have a hard time with that also. You want to take care of everyone but sometimes you just can't. I would bet your family found a way to take care of themselves when you were in the hospital both times. They will again. Be kind to you. Just know that we are here to support you if you ever need someone to talk to or someone who totally gets it. Gentle hugs sent your way. Vickie W., Team Member
1. Carrie Gibbens Member
 <inline-mention username="Vickie Wilkerson" user-id="3316344"/> thank you so very much, it mean so much to have someone that understands my dialema. My daughter, who is 28yrs old & still lives at home, gets so annoyed with me & thinks I'm just being lazy & all I want to do is watch TV. So not true 😢 Today is Christmas day & all I want to do is stay in bed. I know at some point today, my husband & or daughter will snipe at me & make me feel totally unwanted & in the way. I am looking to leave & rent a place of my own. My mentality & physical health hopefully will be less stressed by it all. Best wishes Carrie Gibbens
2. Lori.Foster Community Admin
 Hi <inline-mention username="Carrie Gibbens" user-id="4493200"/>. I hope you are able to have a good Christmas despite it all, but I hope next Christmas is 10,000 times better. If you do go out on your own, independent living might be a good option for you. Independent living apartments usually include cleaning and at least one meal a day. It's similar to assisted living, but for people who are a bit more mobile. Assisted living is a good option as well and might be covered if you are on Medicaid. I would really urge you to get counseling through all of this though. You have been hit with so much negativity for so long that it might help to talking it out. Sending loads and loads of gentle hugs and lots of wishes for big, positive changes in the New Year. - Lori (Team Member)
Lori.Foster Community Admin
Hi <inline-mention username="Carrie Gibbens" user-id="4493200"/>. I am just checking in to see that you made it through the holidays okay. Sending lots of gentle hugs! - Lori (Team Member)
1. Jill.Brodie Community Admin
 That sounds like a really nice visit. I am so glad you were able to spend time with your son. Jill, Team Member 
2. Lori.Foster Community Admin
 I am so glad your son came to stay with you, <inline-mention username="Carrie Gibbens" user-id="4493200"/>. Did his presence make things easier with the rest of the family? I hope you were able to talk with him about some of the decisions you are facing and that you feel a bit better, whatever you decide to do. Remember that we are here for you if you need support. Best wishes for a happier year in 2022. - Lori (Team Member)
Diane T Moderator & Contributor
Hello <inline-mention username="Carrie Gibbens" user-id="4493200"/> , I just wanted to check-in and see how things are going? You had so much on your plate. Where you are able to take a deep breath and relax for a minute, just from everyday life. My parents are 88, so I understand your struggles. Remember, you are not alone. Diane (Team Member)