After joining this group you realise your not the only one.It can feel lonely when your struggling with your health.I was wondering what effect your illness has on your families and how your dealing with this.l went through a breakup with my ex partner who had previous been my only partner id had, as we was together from being teenagers 22 years.l had had a bad time with my ex won’t go into it but l was a mess when l met my partner now.l had only been seeing him six months before I became unwell.Hes been so understanding but I’m scared of my future with this illness and really scared of loosing him.Ive got a teenage son who wouldn’t go out and for ages sat in case I was unwell.Hes been so upset to see him mum who was so independant being unwell.My family I just needed them so much.And I realise its been really rough for them too.I really praise our loved ones who must worry for us so much.
Miss S, I hear what you are saying. I'm married with 3 kids and always was the backbone of the family. Through my sickness I have been less dependable and sometimes that has made for very rough times.
I've been trying to get my family to understand my condition and so far I've managed to get through to my kids who are willing to do stuff for me. Just keep talking to them and letting them know what you are capable of and what you are not.
I am a stay at home mom / homeschool my high schooler. I've had PsA since before the kids were born. It is a tough ride. However, even if I'm stuck in bed, I really am the hub around which the wheel of the family turns. Even if I can't physically do anything, I am the one who knows everything going on with the kids, schedules, am the emotional sounding board, future planner, etc. It's not easy for my spouse, who at times has had to take up almost all of the physical chores, but we know that this comes in cycles, and marriages go in cycles, and what goes down must go up again. Plus, we are both Midwestern raised, with a certain pragmatism of our upbringing.
I have to agree with Marietta. I work from home part time, and have a 6yr old and an (almost) 11 year old. I'm the master planner, so even if I can't do everything, I know exactly who needs to be doing what. I've been lucky so far that while I've had a lot of trouble with fatigue and needing to rest, I've never been completely home bound. Not only would it make me nuts, it would make everyone else nuts too.
My husband has been excellent, although sometimes a little bit overprotective. But I'd much rather have that, than have him pooh-pooh my issues.
It is difficult for those we love to deal with this illness. Sometimes my husband seems to forget that there are times that I can't clean the house and fold clothes and cook delicious meals. Then there are times that he is very supportive. We just have to remember that we are only human and we can only do so much.
I am so Glad I found this Sight, Its nice to be able to chat with someone Like you, Us. I spend several Hours a Day, reading on this sight, Offering a Few words sometimes, So Thank you all, for being there for Me and all Of Us.......
I have three kids including a 5.5 month old baby, 5yr old and 12 year old. My 5 year old actually helps the most. My boyfriend has been complaining lately that I am not keeping the house up enough. He works and I can’t so he thinks I should do everything at home. I realize my 12 year old should help more. All the grief of not doing good enough combined with everything else has thrown me into a depression.
Oh no stardy 76 bless you honey, it must be really hard just with kids let alone house work and everything else.If you ever need to chat message me.lve got a 15 year old son,he’s really good but I’m telling him he needs to help more now I’m unwell.Its hard I know.I can’t imagine having a young child and baby to cope with.l really feel for you.Message me anytime.
Thanks. 
NOBODY can do more than they can do even when they are not well. And Frankly I have seen FEW kids that couldn't do more. But all that aside, it sounds as if your boyfriend needs a little one on one counseling....... I know how far "complaining" would get me. There is absolutely no room for that in sickness or in health. thats not to say partners should let each other off the hook.....
stardy76 said:
I have three kids including a 5.5 month old baby, 5yr old and 12 year old. My 5 year old actually helps the most. My boyfriend has been complaining lately that I am not keeping the house up enough. He works and I can't so he thinks I should do everything at home. I realize my 12 year old should help more. All the grief of not doing good enough combined with everything else has thrown me into a depression.
i absolutly no where u are coming from! i have a 17,14 (sons) & a 3,22month(grandkids) our adopted daughter abandoned! my husband works construction but since there is no work here in ga hes been traveling for the last 2 yrs! its so tuff,my boys r great! i hate that they have 2 see me this way but whata u do? if u need 2 talk,im a great listener! god bless u!
Comments like this are why there should be a "like" or perhaps "really, really, really like" button for comments. Perhaps maybe even a "heck yeah" or "amen my friend button" :)
tntlamb said:
NOBODY can do more than they can do even when they are not well. And Frankly I have seen FEW kids that couldn't do more. But all that aside, it sounds as if your boyfriend needs a little one on one counseling....... I know how far "complaining" would get me. There is absolutely no room for that in sickness or in health. thats not to say partners should let each other off the hook.....
stardy76 said:I have three kids including a 5.5 month old baby, 5yr old and 12 year old. My 5 year old actually helps the most. My boyfriend has been complaining lately that I am not keeping the house up enough. He works and I can't so he thinks I should do everything at home. I realize my 12 year old should help more. All the grief of not doing good enough combined with everything else has thrown me into a depression.
I understand that completely my husband complains about the house not being clean enough as well. I have 3 kids too however they are step-children. My illness prevents me from having my own. I know where your coming from. You are only human and can only do so much. Your life seems to mirror my own.
stardy76 said:
I have three kids including a 5.5 month old baby, 5yr old and 12 year old. My 5 year old actually helps the most. My boyfriend has been complaining lately that I am not keeping the house up enough. He works and I can't so he thinks I should do everything at home. I realize my 12 year old should help more. All the grief of not doing good enough combined with everything else has thrown me into a depression.
Can really relate to this one really struggle with the housework and going to work part time. I think because people cannot see a physical disability they think that you are making it up only people who are living with this illness day in and day out can really understand what you are going through
I'm with lamb, you can only do what you can do. Don't let ANYONE guilt you into trying to do more than your body is letting you. Thank God, I have a very supportive family. While they don't always help as much as I'd like, they don't complain when I need to rest. I used to be an excellent housekeeper, but that has gone by the wayside most of the time because yummy food is more important to them (I've got a houseful of men/boys!), so I make that my first priority. Teach your kids compassion. When you cry, cry in front of them if you have to, so they realize you're a real human being with real feelings. Even though I've been a typical mom (the hub of the house), they have learned to see me as physically fragile. Don't pretend to be strong when you're not! You can't have it both ways - if you're acting strong, don't expect them to believe you're in pain/fatigue. On the other hand, nobody appreciates a whiner. Don't continually "woe is me" either!
Obviously, when you have little kids, this stuff doesn't really apply because you just have to be strong for them. But once they reach kindergarten or 1st grade, they can help a lot!
These are my thoughts. Firstly your meds will slow down the progression of PSA. We can't worry too much about the future or what might happen. It may never happen, deal with it when and if you have to. I do understand we do need to make plans for our futures but don't get too hung up on that. It is impossible to plan out ones future the way we want it to be, don't set yourself up for disappointment. Be open and truthful about what your going through, none of us want to be seen as whingers. Print off information or buy a book so they can read for themselves and learn about PSA. Make a time to sit down and discuss the problems you are having with your son and partner. Talk about when and where you do need help and work out how you as a family can manage this.. Make sure that most things can be done in a time frame that fits in with them so that your not being demanding of their time.
As far as your relationship goes, don't fear the worst, fear can so easily be a complete waste of good energy. It is similar to worrying about the future if it hasn't happened or it is unknown. We can only deal with what we do know not the unknown. If you truly love one another, you will go to the end of the earth for each other. A good relationship is based on love and trust and knowing that person will still be there for you no matter what. Talk to your partner about your fears and hopefully this will put your mind at ease instead of worrying unnecessarily. That is stress and stress won't help your body. There is no point in you feeling guilty about making life rough for them, that won't change a thing and only eat away inside of you, it is what it is and there is no reason why it is you and not someone else it is just how life is. I wish you well.