i have fsgs, and suffer severe pain due to this. i take pain meds that make me feel queasy and dizzy so i don't take them very often. i am starting to get really down and feeling depressed. i can barely move sometimes. my kidneys feel swollen most of the time. and it seems the more i do the more it hurts. i am seeing a specialist soon and i am hoping they can help but i am wandering what to do in the mean time. i feel so helpless. and so guilty as i need my hubby to do stuff even though he works all day and this makes me feel so guilty. any help would be much appreciated.....
Oh Goodness!! Bless your heart! I don't know much about your condition but I do know about letting others do for you. We're all chronic pain patients and not up to our former selves either.
Do you remember that part of your wedding vows when asked about for better or worse, in sickness and in health? Well it's worse and sickness now. I'd bet your husband doesn't really mind. He'd rather have his wife well or at least comfortable.
I've had to come to the conclusion that a sparkly clean house isn't a lived in home. That fast food can be good. That dust bunnies aren't lethal. And any friend who will pick up items from the store is worth her weight in gold. Chronic pain will alter your life in many ways. This is just one of them
If you're like me, you'll go through phases not unlike mourning. It is a death. It's a death of who we once were. The faster you get to the acceptance phase, the better. But you can't rush it. It's a process and is different for everyone.
I'm very glad you've found us. And Welcome. You will like the people here. A very nice group. Not many around right now but many more will be around during the day and early evening.
So stick around and check back. You may want to explore some of the other communities available on MedHelp. I believe there is a kidney group. You can participate in as many you like.
I can't agree more with what Sarajmt told you .She hit the nail on the head. I'm sure your husband is concerned about you and doesn't mind doing anything you need. Also, about your house my saying is it's clean enough to be healthy and dirty enough to be happy .I used to be so anal about my home it just had to be perfect .Now, I feel good if I can keep my dishes done and laundry caught up.In the big picture it's not whats important. You and your health are.I also grieved for the vital person I once was .It is hard to come to terms with not being able to do all the things we once could. Just take it one day at a time.I too feel for your suffering . I will keep you in my prayers and I so hope things get better for you. It is so hard to be hurting so much .God bless you honey ((HUGS)) Melissa
I know what you mean when it comes to your husband. I personally feel like I have failed as a wife and mother. I'm unable to do basically everything that is physichal. I spend most my days on the couch or bed. I get up and do what I can, and what my pain allows me to do. My husband does everything. He does all the shopping, takes the kids to their sports and church activities, he gives them a bath and puts them to bed every night. My husband then does the dishes. It's been like this for the past two years. My husband works all day, plus has two part time jobs for extra money.
I have to tell you, my husband has never complained about what I can not do. He never gets upset the house is a mess and is right there by my side. He is very supporting and I have no idea what I would do without him. I have two herniated discs and a spinal cord injury from a disc moderatly on the spinal cord for too long.
I hope the specialist will be able to help you and help this pain. The pain meds make me feel the same way. I get very sick from them, but those side effects do subside after a while once your body gets use to them. Good luck and I hope you feel better soon.
Welcome to the Pain Mangement Forum at MedHelp. I am so sorry to hear that you have chronic pain. The journey is difficult and we can relate. I am glad that you found us and hope that you will remain active in our community.
I think you mean that you have Focal segmental glomerulosclerosis (FSGS). This is a complicated disease condition of the kidney's. There is an older post On MedHelp's Kidney Disease and Disorders Community with a physician's response at this site:
I hope you will find some helpful information there. You may want to join that community also...but please don't leave us.
That helpless feeling comes to us all that experience severe chronic pain. It's part of the challenges that we face every day. Sometimes it makes me angry, other times it's depressing and in time you will learn how to better deal with it. I suggest that you consult a good pain management therapist. They can do wonders to help you in the journey through chronic pain.
Please, please don't feel guilty that you require help from your husband or even other ppl. You must remember that it is not your fault that you have FSGS. Release yourself from the guilt as it will make your chronic pain increase and wear down your spirits.
As mentioned by another poster you are most likely experiencing the stages of grief. There are many stages and you are grieving for your former self. Depression can go hand in hand with chronic pain. Don't feel bad or weak, it's something we all face and must learn to cope with and treat.
I beleive that your pain is not adequately controlled as you admit not taking the pain medications. Please dear find a medication that you can tolerate and take it. I know that if I did not take my pain medication I would not function at all. Sometimes it just takes time for your systems to adjust to them. The feelings of dizziness and queasy will subside after your systems adjust.....or discuss this with your physician and try a different medication. We often have to go through trial and error to find the right meds.
There may be help available for you through country organizations. Someone to come in and help with the housework or other things that you need done may be available to you at little or more likely, no cost. Please check into that possibility.
And as said earlier friends can be worth their weight in gold. I have an aunt that will come when I need her to do windows, mop floors and such. Don't be afraid to ask.
I assume your husband doesn't complain about his extra duties. My husband helps me with many things and never complains. It's called love. If the tables were reversed I would do the same for him as I am sure you would do for your husband. Don't forget the romance. Continue to build your relationship and marriage with your husband. Even with chronic pain try to do the little things as they mean much to them. A love note tucked in his pocket or on the mirror where he shaves says I love you and thank you.
I really do suggest that you see a pain management therapist. They can be so helpful and assist with the adjustment process. My heart goes out to you. Please keep posting and try to be active in our community. We are here for you and understand the challenges that you are facing.
I feel for you cause we all go thru this thing one time or another. My husband is working 2 jobs right now cause I am on off on medical leave. He really don't mind helping me out but with him working 2 jobs he really shouldn't have to but that is the guilt I carry around not him. He has been here for me thru all of this. People that deal with chronic pain have a hard time with alot of stuff and that is normal. When you do you see this speicalist? My advice is try to do what you can and don't over do yourself doing it. Let things go if you can. We are not super heros and can't do it all right? And the other people on here have givin you some good advice, they are great! Post when you can to let us know how you are doing!
I, too, want to Welcome you to the Pain Management Forum along with everyone else. I would also recommend that you try the Forum on Kidney Disease but hope as Tuck and everyone else does that you won't leave us!!
I'm so very sorry that you are experiencing this.It is so very painful and I hope that you can find the right Pain Medication that can help you without making you feel so queasy and ill.
I'm going to approach this from a different point of view than anyone else. You see my Husband (Jean) died from Diabetes, and for the last 8 years of his life when I would get home from work I would do everything that needed to be done as he was in bed almost all of the time. I didn't mind doing it all because I loved him with all of my heart and would do ANYTHING in the world for that wonderful man. I guarantee you that your Husband feels the VERY same way about you!! Jean would do little things that made me feel appreciated and loved such as some of the things that Tuck suggested like a little note here or there and I would over hear him talking to other people or they would tell me all of the beautiful things that he would tell them about me. It all made it worthwhile. Was it difficult, some of the time it was but most of the time I didn't mind one bit. If the tables were turned I know that you would happily do for him as he is for you.
Please know that our thoughts are with you and we hope that you will keep us updated as to how you are doing and what the Specialist has to say...Sherry
thanks all. i know i should take the pain meds and i have started too, i just hate feeling sick also. the pain is worse in the colder months..... i do know that my hubby loves me and that he really doesn't mind doing what he is doing and has done for me. he always takes me to my specialist appointments and any where else i need to go. he does so much for me and our kids. i feel like i should be doing it all, i try to do as much as i can through the day so there is not so much for him to do.... hubby has explained to me that he doesn't mind doing it and he does get time to do his own thing, as he plays a computer game at night. and gets time to relax and wind down..... it still makes me feel guilty though that he has to do so much.... i so love my hubby and i let him know how much i appreciate him and what he does for me. thank you all for welcoming me..
I do have so much empathy for you. Your husband sounds like mine. Wonderfully kind and supportive human beings, we are blessed and so very fortunate. Hang tight, they don't make a lot of them.
I do know how guilt can creep in when you think you should be doing more...but simply can not. It's hard to deal with sometimes. That's when I try even harder to do the extras that I know my husband enjoys. I cook a favorite dish, dessert or make sure the remote is in his hands, even if I just hate to watch that basketball team. I never say a word.
I have taken to baking something when I am feeling a bit better and freezing it. That way when he has a bad day and I am having a bad one too we just pull it out of the freezer and we're set for supper. If you are able you might want to try that.
I am glad your husband gets some down time. That is so important for our men (or woman) that are part time caregivers.
You sound like you have a great husband and that is a very good thing. I know the guilt can get to you but try not to let it. Do what you can and then don't over do it like I said before we are not super heros. Tuck had a great idea about making something and freezing it. To make you feel better you can try to do little things for him just to let him know that you thank him for everything he is doing for you and your family.
Hang in there,
hi, yeah i started to freeze things for supper on my good days so it was easier on hubby. i also make his favorite meal when he had a hard day at work and i am feeling better.....
i know my hubby is so great. i am so pleased that i have found a guy who is respectful and helpful.. thank you for the kind words and i am glad i have found some people i can relate too and know what i am going through. i try to talk to my friends but they never seem to understand and sometimes i think they think i am over exaggerating my pain.... i was feeling lost until i came in here. it is great. so i think thank you is needed....
One of the many unwanted side effects of chronic pain is social isolation. This is one those things that you don't understand until you're in it up to your knees. Don't be too discouraged by your friends remarks. They do not and will not understand. You cannot convince them.
Just do the things you can and don't worry about the rest. We're glad you found us. We're glad to have you in our little community.
I am glad you have found this board. The people on here have been great for me and I try to be here for them when they need me. I know when I have a problem or feeling down they are there. So this is a great place to post to ask questions or to just vent. Family and friends don't understand sometimes, the good people on here have been thru and going thru pain so we all know how it is.
I am glad you found us.
i am so glad too jamlws, i was thrilled when i realized i wasn't alone and i could talk to people going through it too. it makes me feel some what more relaxed then before. as i feel now i don't have to burden hubby with how much pain i am in...
i am hoping i can be there for all of you as you are for me. thank you
You can take all your pain out on me and not your hubby ;) I can take it. It is good to be able to talk to other people on here and not have to go to your family or friends, of course you always feel better to have your family and friends to talk to but when they don't understand you have to talk to someone that does and we have a whole board of them here. People on here have been thru alot and they are still here to help others thru the pain and I am so thankful for that. So anytime you need to vent or anything we will be here for you. Have a great night and try to get some sleep.
so not a very good start to the day.... woke up in massive pain. going to be a very crappy day for me. think i might have to ask someone to take kids to school for me. i hate that, but i guess it will be that or they will be staying home. i should feel ok about asking but i feel so guilty....... i hate it. because the people that i can ask i think think i am faking so it makes it really hard to ask.... it is a stabbing pain, and sometimes it feels like my kidneys are swollen, and it also has like a burning with it.... it is so irritating and annoying. i feel useless....
Could you have a UTI? Or maybe kidney stones. When your dealing with people and having to ask for help just say something like "I'm not feeling very good today can you take my kids to school?" and then leave it at that. there is nothing wrong with asking for help but when people act like your faking it, it does make it so much harder to ask. Is there anyone close to you that don't treat you like your faking? And don't feel useless, there is no need in that, you are NOT useless you are in a person in pain that needs some help from time to time. And please let go of the guilt cause we all need help and even with other people that don't have anything wrong with them need help. The best way to think of this is people with diabetes need help from time to time too and people with a broken arm also do. We do have health issues and we can't do it all. I have been trying to clean my house for 3 days now and I still have not been able to do it yet. But that is ok cause I will get to it when I can. I got into it with family this week over me not being able to work, they say there is nothing wrong with me and I can work. Well they don't feel my pain they don't know what I deal with every single day of my life now. And since then I have been in alot more pain so I can't do the stuff I need to get done til it calms down. So please don't be so hard on yourself we all go thru this.
hi, yeah doc checked for uti and stones and i don't have either. i asked my friend this morning and she was very rude to me and seemed very annoyed at me. so i think i will not be asking her again..... i am trying not to feel guilty but it is hard... i am sorry for you and what happened with your family. it makes it all harder when no one believes you. it makes it more stressful...
I total agree with you. It is my husbands family, my family would never do that to me. My mom is the one that is pushing me not to even try to go back to work cause she knows how much pain I deal with everyday. I would ask other people and not that friend that treated you like that this morning. You don't need anymore stress then what you already have plus you carry way to much on your shoulders and that adds even more stress on you.
Hang in there hun
i am glad it not your family..... my hubbies family seem to be ok, they haven't made me feel like i am lying, it is my friends who are doing it to me. i stopped talking to one friend because she thought that and i couldn't take being around someone who thought life was all about them...... now this friend is doing this. i really don't know anymore. i think i should find some new friends, my sister seemed to be ok with it she didn't seem to mind picking up kids but i feel guilty when i ask.... i hate it. i hate having to ask i know i shouldn't i just have to find some one who doesn't mind doing it every so often......
It is always hard to ask for help but when you need it, you will have to ask. Just try to deal with all of this the best you can. Try not to be so down on your self. I agree that you don't need to be around people that make you feel like you have to prove your in pain, it isn't right. we go thru enough to not have to worry about proving anything. I mean it is bad enough to have to prove to doctors let alone friends and family!
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