No one understands

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 3/26/2010 5:00 AM (GMT -7)   
Hi everyone. I have been feeling very down over the past few days. I have been in pain with  my hands and shoulder, horrible fatigue that just won't go away no matter how much I try to rest and I also feel generally unwell although I can't point to anything like an infection- I just seem to always have a headache and my nose is sore and bleeding (not a lot of blood but enough to notice when I blow it). Im on methotrexate and arcoxia but they don't seem to be helping and I had a steriod shot last week that doesn't seem to have worked either. Also my grandfather, whom I am very close to, is very ill at the moment in hospital, so I am driving there most days after work to visit as we don't know how long he has left. I am very upset and stressed by this.The thing is my husband just doesn't get it! He seems to think im making it up especially the fatigue- I don't know how to explain it to him. He thinks because im young at 24  that I should be full of energy like I used to be before I got RA. I just don't know what is happening with my body at the moment and wish someone would just understand or at least accept how im feeling instead of thinking im over reacting.

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 3/26/2010 10:39 AM (GMT -7)   
awwwww {{{{{{Lynny}}}}}}
 
I'm so sorry you have so much on your plate right now and a husband that doesn't understand. I've got one just like him.
 
When my dad passed away I was devastated- he was my hero. I had to travel to FL alone to be with him and my mom and I held his hand as he died.....
Well 2 months later I was still crying from time to time when I thought of him and that aggravated my husband. Why are you crying he asked?  My dad died-I miss him I said. That's over he told me!mad
 
But back to you- I've only been in this for a little over 2 years but I have felt misunderstood over and over again and I have come to the conclusion that people that don't have RA will never get it! You said it yourself you don't even know what's happening to your body from moment to moment...how can someone who doesn't experience this craziness understand it? That's why I come to these support groups now. WE UNDERSTAND!  Don't get me wrong I think a spouse should be supportive unconditionally- if we say we don't feel well and we are overwhelmed they should just believe us and give us a hug and maybe give us a hand with what we need. Unfortunately we are not all so lucky to have people like that.
 
That said- I want to say take care of yourself. If you are tired-rest no matter what your husband says about it. If he balks remind him that your immune system is constantly attacking your body- it's as if you are constantly fighting a flu- does he know what it feels like to be coming down with something? That's how we feel. MTX causes fatigue too.
You are not over reacting and I really feel for you - it's a shame that at 24 you have to be feeling so crappy when you should have vibrance! I resent it at 49! Before RA I felt like I was 25- no lie! I bounced out of bed every morning- never an ache or pain! RA stinks big time.
 
You just come here and tell us all about it Lynny- we're here for you!
 
Prayers for your grandpop- enjoy what time you have with him-I'm sure he knows you love him very much!

so very tired
Regular Member


Date Joined Mar 2010
Total Posts : 26
   Posted 3/28/2010 5:04 AM (GMT -7)   
Husbands are a rare breed.. If they are sick the world stops... If we get sick of course it keeps going!!
My husband tries to be understanding but he does not get it..He will rub my feet and think well it should be better now right? If I complain he rolls his eyes like enough already!
He is former Marine who has that suck it up attitiude, it can't be that bad... He has moments where he is wonderful but he thinks it should be better already!!!

WELL IT IS that bad!!!
The fatigue, the lack of energy and the depression ,,it never goes away!
I am a school teacher and on my feet all day. When I come home and sit for the first time --my feet are throbbing and swollen. All I want to do is sit, sleep and some times cry. He wants to go do this or that. Let's go here.. My son want me to take him places as well. "MOM can do it all". Well, this mom can not do it all anymore.. Soccer season is coming and I dread going to games where I sit in the car and watch my son because it is too hard to walk down the hill and across the field to the game.
I love the people who tell me exercise will cure all. Well when you can barely walk how the hell am I goin to exercise!? I feel like they think i brought this on myself. if I was more active I would not be sick.. I try to be positive.. it could be worse I know that as awful as I feel others are worse..
but............

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 3/28/2010 7:08 AM (GMT -7)   
so very- I bet you don't look sick either which makes it even worse. That's the predicament I'm in. I have always been very fussy about my appearance and RA was not going to take that away from me. I have found ways to adapt so I can continue to fuss. I do exercise-there is a program on tv that has moves that are not complicated and most of them I can do. When they are doing something my body can't do-I just keep moving "free style". This has enabled me to look fit. I still put my make up on. I dress nice. I found that my ankle and feet hurt no matter if I have "sensible" shoes on or heels so I wear heels. I have a sit down job so I can do this- I would never be able to be on my feel all day like you are. In fact when I have to go grocery shopping after work I have to bring a pair of flats to change into-after all day my feet really want slippers. I have lost range of motion but I have adapted so well and found new ways to move- no one else can tell...
Therefore people think I must be feeling GREAT! Certainly there is no way I'm sick. But I DON'T feel good. Always tired, every time I pick up more than 1 file at a time my hands hurt, my feet hurt if I stand more then a few minutes on them, My knees are stiff when I have sat for 1/2 hr. and now need to walk. They are just some of my complaints. Since at onset it was more like feeling like I was walking on broken bones and my upper joints were being sawed off- I don't feel like I have much right to complain. But truth is I don't feel good and when people act like or tell me I'm well- it hurts.

Wish I had a solution for those long walks to the games- I really can't think of anything unless you would be willing to take a ride in a wheelchair but that is probably not something you are ready to subject yourself too. Oh what would people say then?

so very tired
Regular Member


Date Joined Mar 2010
Total Posts : 26
   Posted 3/28/2010 10:27 AM (GMT -7)   
I have never been "Miss Fitness"... but I was active. I had extra weight of course i wanted to lose but I maintianed and kept it somewhat under control. But now I do not walk... extra weight has been added,,, add to that the predsisone ( I ate alot!) and depression,,, I have gained!!

I have slippers in my classroom and if my feet hurt too much I do wear them but of course if I have to walk around the school I put on shoes. The younger kids ask why I am walking funny/limping I tell them my "bones" are sick ( not going to get into the joints aspect....) The past week or so with my first humira shot -I have been feeling somewhat better --and a few of the kids noticed I was walkign better!!

Grocery shopping is hard because my hands feel weak and I am afraid I will drop things. A trip shopping will definatley be an eventful day--followed by rest and icepacks...

The good news is Humira seems to have helped. It has been 2 weeks and for about the first 10 days i had little if any pain and swelling was gone. Now it is creeping back in some swelling and increased pain.

My knees are hurting and that's totally new symptom! Oh brother!!!

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 3/28/2010 6:05 PM (GMT -7)   
you know something just struck me- since I started Humira my knees have been hurting me too! They also were not a symptom of the past. My hands seem better but my knees hurt and have crepidus!
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:42 AM (GMT -7)
There are a total of 2,733,991 posts in 301,165 threads.
View Active Threads


Who's Online
This forum has 151299 registered members. Please welcome our newest member, ABBear.
206 Guest(s), 1 Registered Member(s) are currently online.  Details
BreRosie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer