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just a personal rant to people who get it

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Rheumatoid Arthritis
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Posted 2/24/2013 6:23 PM (GMT 0)
So I have RA,as many of us do here. Now dr. thinks that I have Fibro. with it as well.
My hubby has been off work since Sept.2012 due to a car accident,he's fine but hurt his hand and has to go to physiotherapy to get it working and strengthened again. He has many days where he is hurting. Because of my personal illnesses I get the pain days he has and try to be understanding and helpful. So anyway, today he decides he wants to go out for a walk. I think great gets him out of the house and active, maybe I will go with him. But before I mention that, he says he wants to go for a long walk AND at a fast pace cause walking slow will do nothing for him and he wants to loose weight a whooping five pounds. So now my feelings are hurt. I need to loose weight, and I know that. I also know its more than 5 pounds I need to loose. I'm not obese but am overweight, I have gained weight partially my own fault but also partially because of the medication I am on. I would walk but cannot walk as fast as I used to cause it hurts. For me to go for a walk it hurts my hips and knees and even feet/toes, but I would go just cant go fast. when I said I would've went but I cant walk that fast it hurts he just gave me that look of ya right. So I said I hurt for days after I go for a walk, compared to before when you walk fast and it hurts but its a good hurt cause you know it will go away and it will help loose weight. So, we established I wasnt going. Fine, no problem. BUT THEN he says when he gets back HE will start the laundry (as today is usually laundry day so kids have clothes for school). As if I cant do it, or am too lazy! I'm not lazy and DO do the laundry I just hadnt got to it yet. So now he's on his walk, and I am doing laundry feeling bad cause I feel like he dont get it,and that he thinks I'm just lazy because I didnt want to walk as fast or far as he wanted to. I am hurting today, I live in Canada and its snowing AGAIN. My hands and elbows,and knees are killing me. I went to the grocery store with my 9 year old son and he helped carry groceries in, I took pain pills and well might as well grabbed an ice cube or something as they havent even touched pain.
Sorry but I needed to vent, and usually try not to feel sorry for myself. But he really hurt my feelings today and i dont think he even has a clue he did it. Thanks for letting me rant,and post this. Not usually a whiner, hope you dont mind. Have a wonderful day, ((gentle hugs)).
Sorry so long. Thanks for reading :)

Post Edited (TayIsa) : 2/24/2013 12:58:55 PM (GMT-7)

Posted 2/25/2013 12:21 AM (GMT 0)
He probably didn't. I know how you feel, though. I let my feelings get hurt way too easily...I wish my husband would walk with me...he won't get off the couch. He doesn't want to do anything. At least it sounds like your son is a comfort. Hang in there! Tomorrow will be better.
Posted 2/25/2013 12:33 AM (GMT 0)
So sorry you are feeling Blue Tay. I would be feeling the same way as you are. It is possible that he doesn't realize how he's made you feel but he should.
Hope you feel better tomorrow.
Posted 2/25/2013 6:50 AM (GMT 0)
Hi TatIsa

hay that is part of why this site is here, it's amazing what a little rant can do especilly when those your ranting to Actualy Get it!

and having an at home hubby i know Exactly where you are comming from

i often think he has insulted me when he actually has no idea he did

my hubby is also my carer so  i depend on him for bathing and - well everything

so sometimes i might want to do something now but he's busy doing -- i don't know what

so i have to wait but by the time he's ready i'm tired so either i push thru and do it or forget about it.

and the times i'd like to go to the supermarket -even just to be normal and have a wander round - so we might need a few items but he say's it's quicker if i go by the time you --blar blar -- it makes me feel like i'm such a burden

sometimes they can be great but othertimes i really think they forget we actually have a problem

 

Posted 3/20/2013 8:27 PM (GMT 0)
Thank you all so much for replying and understanding! I am soo sorry I never replied but my internet got cut off for a while there so couldnt read or respond to anything.

 I am so glad that this site exists and that so many members like yourselves are so caring and understanding as I usually try not to complain,and when I do I feel bad or feel like its no use cause nobody gets why I am. Then I remember I have friends on here that DO get it! and am so thankful for them!

Yes my sons are a great comfort most of the time :) and hubby usually isnt so non-understanding but there are times!! and this was one of them cry .

Spring is almost here, I am sooo looking forward to the sunshine and being able to get outside more instead of hibernating away from the cold! I know that then there is the rain, but staying positive and wanting sunshiny days ahead. I hope you are all doing well, and have a wonderful Easter coming up.

((gentle hugs)) and Thanks again!!

Posted 3/28/2013 3:24 AM (GMT 0)
Sorry I haven't been posting much and missed your rant. I know exactly how you feel, my husband is the biggest coach potato, but if he walks he leaves me way behind... and I struggle along in his tide like I'm some sort of third wife or something less important.
Sometimes he will be very caring and bring me a cup of tea during one of my many rests. Other days its like you are such a hassle or as Bad Day said, a burden.
He hassled me to get a cleaner to help. I knew we couldn't afford one so I kept putting it off but the house really did go beyond me. So I get the cleaner and now I hear the complaints about paying for her. I can't win.
So you see you're not alone, I love being able to rant, keeps me sane, golitho
Posted 3/28/2013 4:52 PM (GMT 0)
golitho, Thank you so much for your reply. While I HATE that I am not alone and others actually are going through this horrible disease, I am also glad that I am not alone. I am grateful for people who really do understand. Its so nice to have a place to scream and say I just have had enough! (figuratively) because if we were to do it in real life...people would really think we are nuts! lol
Hope your day is better. Happy Easter weekend. ((gentle hugs)) and thanks again for being so supportive :-)
Posted 3/29/2013 3:58 AM (GMT 0)
It's probably for the best that you did not go out with him, for starters sidewalks are unsafe and can have pitfalls and that could've hurt you badly, mention to him that maybe you find a local track in your area or tennis courts and either walk safely on a soft track or inside the tennis court if it's not being used, both these are safer alternatives to walking on a sidewalk, or maybe ask your doctor about light physical therapy and start there with learning the proper stretches before just going all into exercise, I'm actual proud of you for not going and possibly getting hurt on the hard concrete sidewalk...next time point out to your hubby the safe issues and maybe start slowly so no one gets hurt...and try to find a outside track maybe even contact a local school and ask for permission to use there track...and make sure he has a cell phone on him when he goes out incase an emergency...Hope this info helps and stay strong and maybe seek out help with light physical therapy first you'd be surprized how much that can help!
Many well wishes
Posted 3/29/2013 2:34 PM (GMT 0)
Chartruex, thanks for the post! we have gone for some walks since this post but I'm sneaky and made it a family walk with our two sons 9,and7 so it HAS to be much slower for thier pace! lol. I agree with what you are saying though. Thanks so much for all the great ideas and for your support and understanding. have a great Easter weekend. ((gentle hugs))
Posted 3/29/2013 3:47 PM (GMT 0)
I used to be very active and in shape until I got married. My husband won't do stuff with me and I've fallen into a rut. All the pain doesn't help. I get what you mean. That's what the forums are for, to support and vent if we need to.
Posted 3/29/2013 4:16 PM (GMT 0)
hi jeanneac, thanks for your post! I am very grateful for this site, it really is awesome isnt it?! once the warmer weather comes (as I live in ontario Canada) I plan on walking my son to school rather than driving,its only a short walk about 7 minutes for me pre RA symptoms, but it is a start to walking again. We walked at beginning of school year,then winter came and it really is MY fault why we drive so I am going to force myself to walk with him again. That will get my walk in, and with my son so its not an intense and fast paced.
Sorry to hear that your hubby isnt interested in doing more "active" things with you.
Thanks for your support, hope you have a great Easter weekend. ((gentle hugs))
Posted 3/29/2013 4:39 PM (GMT 0)
Jeanneac,
Maybe get your hubby into his/her primary doctor and ask about light physical therapy for both of you and maybe then going together to physical therapy might get you both started on getting back into shape slowly and the lightness of it so that you won't get hurt by over doing it...always start slowly and light pt can show you the proper warming up as well and stretches, even things you can do at home sitting or maybe try beginning tai chi, a tai chi came into our fibro meeting once and I still do those very basic steps and you can do them sitting and it can help so much, but go slowly and do not do anything near bed time or you won't sleep...Many well wishes...exercise doesn't have to be hard it just has to get you into regular movements so you can stay good.
Posted 3/31/2013 5:55 PM (GMT 0)
Hi TayIsa,

I too get what you mean! I have fibromyalgia, and now i think I may be getting RA! So I feel like throwing in the towel some days :( My husband has no idea what's it's like for me living with all this chronic pain (I have IBS, vulvodynia, GERD and IC too) and all I want most days is for him to be more understanding and just give me a hug, but he tells me he is so sick of me complaining. Anyway, I not to and try to do things with him so he doesn't think I'm lazy, but it sucks. My feelings get hurt very easily too. That's why it's good to come on here and vent :)
Posted 4/1/2013 12:07 AM (GMT 0)
Thanks for your post shrtcak81. I have recently been told by my family doctor that she thinks I also have fibromyalgia, along with my RA. So while I do not have the others you have I do understand having more than one. I am sorry you have to avoid doing things just to avoid being labelled lazy. It really does suck. I love being able to vent to people who really get it though. At times I feel like maybe I shouldnt complain as there are people out there who are far worse off than me, and that maybe I should suck it up. But when 'loved' ones hurt your feelings, it seems to hurt more than if it was a stranger....
Hope you had a good long weekend. And feel free to vent anytime as I will definitley be a shoulder for you....as well as the others on here. Thanks again. ((gentle hugs))
Posted 4/4/2013 3:15 AM (GMT 0)
Hi Tayisa,

Do you know there will always be someone worse off in the world but that doesn't mean you can't rant.

I remember the first time I visited the pain management clinic, there was such a depressing air to the place, not a smile to be had. It was even situated in the bowels of a hospital, underground, dark and dour...need I say more.

They were extremily helpful to me even though I felt like I was no where near the scale of pain of some of their clients. They had useful suggestions about small scale goals, keeping your focus on day to day pain management rather than long term. Helped me put everything into perspective plus linked me up with good OT help, like braces to support my wrists, orthotics for my feet.

They also taught me that knowledge about our condition gives empowerment, that we should know all about the treatment options etc.

So sometimes ranting is the best thing for us to do.

Best wishes, golitho

Posted 4/4/2013 11:31 AM (GMT 0)
Thanks golitho!
Sometimes people are so inconsiderate of others conditions,diseases,hurts,feelings....that its overwhelming. Then there are others that are always so comforting,and caring.
This group has people who understand and are able to genuinely care how others (even though strangers) are feeling and doing.
Have a wonderful day,and hope its as pain free as possible :)
I get to go out and have a girls day with my Mom and little Sister today. Its always good for a few laughs. Will pay for it later,or tomorrow...but gotta still do fun things right? ttys ((gentle hugs))
Posted 4/4/2013 1:22 PM (GMT 0)
oh my, i found on fb a picture of fingernails and what different ones look like mean different things. Like my fingernails have ridges on them and i found those kind on the page, and it actually said it meant RA. finding that interesting,because I have been wondering lately why I had these weird ridges and all of a sudden this page explained a possible reason I showed my dear hubby. He says that he has ridges on his nails and he probably has RA too, but just been dealing with the RA.... (now for some background at why this ticked me off...I have been with him since '96, know he has back problems,and had some accidents that may end up in arthritis as he ages, but last night he springs on me out of the blue that ya he had arthritis since he was like 10 and they were gonna pension him off in highschool but he didnt want to cause he wanted to work....this is the FIRST TIME I have ever heard that from him or his mom or someone anyone, in his family...would you not think it would have come up before this? and if it WAS RA would you not think he would be diagnosed by now?) so anyway the reason it ticked me off was kinda like he was blowing my pain off basically saying he's been dealing with the horrible hurts of RA since he was 10 but I must be a wimp cause I have been diagnosed since '08 and hurt alot? why is it all of a sudden RA he has?? he recently had a car accident and hurt his left hand and arm and I agree that it really must hurt and might have even "woke up" other hurts or arthritis in other parts of his body....but just erks me that he actually blew me off the way he did with what he said....some people I tell ya, then they wonder why I dye my hair...could it be the grey they are giving me????
any way another day another rant....sorry so long
have a fantabulous day!! ((gentle hugs))
Posted 4/4/2013 5:25 PM (GMT 0)
Very interesting about the finger nails I have ridges on mine...So very sorry your hubby did that to you! next time he speaks up just say "good for you!" it might catch him off guard. I just hate it when out of the blue they "hubby's" say something like I have pain too, that's when I wanna yell at him "then tell a doctor about it or shut up!" and I might do that. Anyways you can rant any time, we all need to do that, and I hope your hubby gets more understanding,but don't expect it...Maybe take him to one of your appointments.
Many well wishes...
Posted 4/5/2013 5:16 AM (GMT 0)
It irritates me so bad too when my husband decides to say that he hurts too, as if it's comparable to the pain I go through! Grrr, so aggravating! I've been trying not to complain so much, but it's hard not to say anything. He just gets tired of hearing me and doesn't know how to be more supportive. I would love for him to be nicer to me when I'm not feeling very good :( He just doesn't get it.
Posted 4/5/2013 11:29 PM (GMT 0)
Chartreux and shrtcak81 thanks for your posts and support. I am sorry though that we all have the same dilemma....family that speak before they think,and comments that hurt!
I have had my hubby join me in my appts, but my appts are rather quick and not really informative. The first few were, but after that mostly the rhuemy looks at my joints (looking for redness usually,which I for some reason dont get but I do get the inflammation), and looking for whatever else she looks for....she then asks how my meds are working, I tell her I still hurt all the time and am exhausted all the time....she orders blood tests, the occasional (very few and far between) x-rays, and sometimes urine tests. Then she will say she will talk or email with my family doctor so the three of us can keep fiddling with my meds till we get the right "concoction" for me. The whole appt usually is no more than 10 minutes and i'd say even that was a stretch, and off I go. So hubby doesnt come in anymore because there is no point.
Most of the time until the last couple months I guess my hubby has been more supportive....wont let me go without my meds (which I have offered to do if my kids need something or something important comes up where the $ is needed for that) He ALWAYS finds a way to do both, bought me my own electric blanket to stay warm, is always makign sure im warm enough, bought me an ipad so I could read, I love to read and holding books hurts so my ipad is AMAZING!!, massages....snuggles...concern,...but its just been lately he's been for lack of a better word an airhead. Speaking before he thinks about what he is spitting out. I think maybe I should just tell him he's hurting my feelings, but wonder if it would even help....so just fluff it off....(and rant in here) so I really and truly thank you for listening to me complain.
On a happier note, I went to my local library today (and I live in a very small town)and the librarian hooked me up with e-books I can "sign out" from the library sight. I was sooo excited!! Free books I can download and read till my hearts content!! Now I really cant wait till summer, go sit outside, and read a book,and watch my sons play...c'mon summer sunshine!!
Hope you all have a wonderful weekend ((gentle hugs))
Posted 4/10/2013 4:04 PM (GMT 0)
hummm I just realized how very lucky I am. Not that this is luck for sure but my husband was diagnosed with RA long before I was. I was and have been very sympathetic to him as I was so worried about him while we were trying to find out what was actually wrong. He came down with RA and non hodgkins lymphoma at the same time. What a shocker that was to our family. Thankfully he has never had to have a treatment for the lymphoma. Hopefully he never will... he has a very rare type. Well about 3 or 4 years ago I found out I have RA as well. He is very understanding and cares for me. I sure hope that your families will be a little more understanding. You never know when it just may happen to them. Praying for you my friends.
Peggy
Posted 4/10/2013 5:07 PM (GMT 0)
psbg, thank you for your post. There are many fine people in this forum, here to listen to and support other group members. While I am sorry your husband and you both have RA, I am glad you have eachother for support. Have a wonderful day. And please post again, would love to here from you. :-)
Posted 4/10/2013 8:42 PM (GMT 0)
I am so with you on people not getting it!  Fortunately, my husband is quite supportive.  I don't think he gets it 100%, but he comes pretty close and he knows when I'm feeling bad.

I've gotten to the point where I don't even want to share it with anyone outside of my husband or my doctor.  I recently had a conversation with a co-worker who was trying to talk me into doing power yoga.  I explained that I could try but that I have RA which would prevent me from doing it entirely--my poor body just doesn't bend like it used to, and I'm only 45!  She simply gave me this yeah, right look and said, "And..." like I was entirely making the entire thing up. 

I get tired of people constantly belittling the RA or demeaning it by comparing it to the arthritis they have in their pinky finger.  I try to remember that people who don't have it, truly don't understand what it feels like to wake up feeling like you've been hit by a truck.  Or the fact that most RAers take multiple and potentially toxic drugs to treat the RA, which can lead to its own set of problems.   Sometimes, on bad days, however, I truly wish I did have others who understand.

RA Warrior, if you haven't yet discovered it, is a good blog about having RA and how it is construed and misconstrued by both the public and even the medical community. 

Posted 4/11/2013 7:23 PM (GMT 0)
I so understand the co worker thing. There was a lady that used to work with me that would say something about her arthritis hurting every time I even remotely mentioned not feeling well. She even had the tests run to see if she had RA but did not. WOW the nerve of some folks.... just gotta pray for them.
Peggy
Posted 4/15/2013 1:48 PM (GMT 0)
Thanks for the post Mayflower7,and psbg. I really do appreciate all the support you all are giving me. Its nice to have support, especially when the people that are supposed to love you and care for you and yourwell being dont seem to. My Mom tried to 'cover' for dear hubby saying its cause he doesnt know how to deal with it, or help you so he fluffs it off. Well to that I call BS! He is just being a jerk, and knows it!! He's not working right now, and is mad at me cause Im not either! I'm currently laid off and will go back to work soon. Seasonal work does that....but anyway thats a whole other ball of wax.
I hope all of you are having a fantastic day,and your families are doing well. ((gentle hugs)) and thanks again for all your wonderful support. gonna go read a library book now, i cant get enough now I know how to borrow them :)
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