I have been trying to shake overwhelming sadness today and it's not getting better. I've lost so much to illness. I have a healthy vibrant husband and I feel like my life was stollen from me.
I don't mean to be a debbie downer, I know the drill, but I let him go do something that I couldn't physically do for two weeks. I thought I would be fine with it, I told him to go. But I just feel such loss around who I was and I don't know if I'll ever even get back part of that.
Ugh, I have become so pathetic since getting sick, someone and something I never was.
I have my appointment coming up on Tuesday with my rheumatologist, I'm going to demand better medications, I can't live like this. We have to talk about Lupus as a possibility in addition to my RA and I don't even care anymore, just get me better!
Whoever reads this, thank you, I am feeling very alone tonight. I had so much I wanted to do with the rest of my life (I'm 46).
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cheshcat
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Sometimes I think you just have to allow yourself to be sad, and not pretend to be Ms Sunshine when you don't feel like that. And not feel guilty about having a bit of a wallow in misery......but just for a little bit. And then pick yourself and get geared up for fighting your corner at rheumy appointment.
The positive is that at 46 you have many, many good years ahead of you, so try to look forward not back. Ok you may have to make some changes of what you can do, with and without OH, but no way should you accept that this is all that can be done to manage disease until every options has been tried. I think you had a Vectra test a while back. Did that show your RA was highly active as that would help the argument to get a change in meds.
I really don't understand the US health system - but only having been offered Lef & Sulpha seems quite conservative as a treatment. Are biologics not an option for you?
I did have the Vector test last December and it is highly active. I had a flare of "something" in March and my rheumatologist wanted me to be cleared from my neurologist before he changed my medications. I was just cleared a few months ago and I wrote him and told him basically, balls back to you, I can't keep living like this. So I am very hopefully I get to move onto the next step up in medication! I will update after my Tuesday appointment with, I hope, good news about my next med plan!
My mom isn't super happy with my rheumatologist, she feels like I've been in a flare for a year and he needs to work harder, offer better meds, to bring it under control. I have looked around and I have another rheumatologist in mind if this one won't budge on meds. I just can't keep living like this!
I should add, it's not all his fault (but I expect a biologic at this point!). My neurologist and rheumatologist like to play, "you're it". They can't seem to decide if it's neurologic (MS) or another rheumatological disease. I don't care much at this point, lets just move on!
Thank you helixhelix !!! I'm taking my Mom with me tomorrow. And I'm not beating around the bush. If he doesn't start seeing me monthly and start me on better meds, I'm going to another rheumatologist. I'm DONE! I want to work on feeling better.
It's a blood test that looks at 12 different things and gives a much better idea of how active your RA is than just checking inflammation markers. But it's expensive and isn't available in the UK - not even privately yet I think although I could be wrong.
Why didn't you go with him,we never go away without each other,you just have to adapt. We do a big day one day then a small day meaning something local. If your hubby is athletic why don't you let him have a day or two doing what he wants while you rest. Wen were in Cornwall this year and we went to the Eden project and that becomes a two day event because seein it in one day is now too much for me. We don't travel abroad anymore because i don't think i could travel as well now,but my hubby went to the Menin gate for fie days for the great pilgimage to remember 90yrs since the end i of WW1,my friend came and stayed with me while he was gone and we had our own kind of fun around my illness. I would have loved to go with him,but he and i knew i couldn't have coped with the intense days if i went it would be a ten day trip not five days. Next year darling arrange your holidays around big days and little days. I am sure your hubby didn't want to go without you, i know my hubby wouldn't have gone if i had been left on my own and that has come to light since GP90. Don't despair darling life is much different to what you expected i know it was when i was diagnosed when i was 45 and i have just turned 63 yesterday. I always expected to take care of my hubby as he is 12yrs older than me not the other way round. He takes great care of me as well and i love him dearly.xxx
I feel for you Cheshcat. I was your age when I first got RA. There is an acute sense of loss. There are good days and bad days. Just to encourage you even though i had to give up my walking and swimming with friends (I was too sore to dress and undress) I discovered something I could do and that was write. I wrote a few little books for my church.
I hope you will find something new in your life that you enjoy.....
I am 68 now and celebrate the new person that RA has moulded me into. I still have my sad days..... and have learnt to have a busy day followed by a quiet day. On my sad days I have a list of good things to do..... music... movies.... talk to a friend.....or sit at my favourite cafe. I indulge myself completely. lol
When you are feeling sad just go with it.... its a process you will move through and it is so good to talk about it to people who really understand. You may still be going through the acute stage of the disease and still sorting out your meds.... I was acute for a few years and then started to improve. You never know what the future will hold. All the best. Rosie
Bless you I am 63 and I feel exactly the same as you.this illness hit me hard I was always full of life always on the go and now I feel I am a burden I don’t want to carry on like this so I no how you feel what do we do get more drugs feel fatigued all the time sorry I can’t help you be strong tc xxx
I couldnt agree more with everyone. We know how you feel. Keep in touch so you dont feel on your own and when you pickup we can all be there as well. Be kind to yourself cheshcat. Gentle hugs and flowers 🌷🌹🌻🌼🌷🌹🌻🌼x
I was 45yrs old when i got RA and it has been downhill ever since. I have since turned to photography to while away the time and cooiring books as well.xxxx
Sending you a big hug life is shit sometimes but he be bk soon and you will wonder why it hurt so much but you did it on your own and you'll feel amazing and stronger nxt time
Really feel for you. We have all been there. I go and shout at trees on a regular basis! It's Ok to be sad sometimes.
Don't give up though. Yes things change and it can feel depressing and overwhelming, but you can still do things, with adaptions.
I'm a wild camper. Can't fell walk any more, or walk huge distances, but I can camp on lower ground. Sometimes even camp locally so I still get a feel for my old ways. I can't ride a two wheeler, but I can just about ride a trike...it's hilarious!
I don't have a partner, but I can imagine how hard it must be not to be able to join in with all a more able partner can do. However, there will be things you can share together. Try not to be sad about the things you can't share. After all, in relationships folks always have seperate activities they enjoy on their own.
Depression really sucks, and makes everything feel bleak. I suffer with it a fair bit. I find what helps me kick the butt of the black dog is getting out. Or just popping to a neighbour for coffee.
my heart goes out to you, I know I feel like that too some days , well most days latley, its an up and down sort of feeling isn't it, but your feel up again, just got to stick in there and take all the love and support that's pouring out to you.
Hi there, I'm sorry your feeling so sad at this time and can understand. Your husband going away to do something you know you currently couldn't do will be getting to you even though you agreed for him to go. I think this illness can, at times, make us feel a failure. Your not pathetic. Loved one's in a way are going through the strain too. They can feel helpless to know what to say or what to do in an attempt to be helpful. You sound very frustrated. These feelings are perfectly normal. The majority of us have had active lives before RA. I travelled from john o groats to lands end hiking hills along the way with my collies! I struggle to get upstairs sometimes now. I am mindful too though that I'm that bit older so without RA it wouldn't be so easy anyway! Things will get better but you must be patient. The drugs take time to work and the down side is they may not work and your back to square one again on a different drug. The up side is, when your rheum finds a drug that works you can be yourself again ( within reason) To feel as best as you can, consider your lifestyle - diet - exercise - stress etc. RA is sensitive. Be kind to your body.
You're never alone here, cheshcat. I suspect most if not all of us have exactly the same feelings as you. A sense of bereavement for a lost life seems a perfectly normal reaction to me and it's horrible. Finding that previously enjoyable activities are too difficult or even impossible would bring anyone down and it's ok to be sad about it for a while, then use that energy to fight back. Huge hugs
Completely understand. I don't have RA but been struggling with obtaining to get a dx for a year. looking like Behcets or something of the like. It has turned my world upside down. Used to be on multiple academic committees, working full time 10 hour days, working out 7 days a week! Just yesterday I resigned from my last committee. It took me a long time to come to terms that I just can't do it anymore. What I can do though are new and different things. But it's not the same. It has been a lot of grieving of my old "high powered" self. And looking at what this "new" me is. I hope with all the support here and elsewhere you give yourself a break. Lots of hugs. I know how hard it is.
I truly truly can't thank you all enough for your kind words ❤️❤️ I had a busy day with the 13 year old yesterday and then was in bed until I had to go take her to the rest of her camp thing for a few hours. Home now!
I was so overwhelmed last night. I never suffered from depression until RA. I'm not sure I really am depressed per se as much as I am depressed about my circumstances. It sucks, it really just sucks!
My husband has been wanting to go to Burning Man for several years now, he has lots of friends that go. And he went with a big camp on the building crew. I have now become allergic to the sun and have to wear protective clothing. There is no way I could do something like that for 2 weeks, even with our RV. I talked to him a long time this morning, and cried, and he said how much he missed me too. He won't be going again and we will find things to do together from now on. But he is happy he went, for the experience and I'm not unhappy for him, I just wish I could do "everything" still. I have to be so careful with my body now. We've been together since we were kids and married since I was 18 and he was 19. I do feel bad that I can no longer do all the things he can. Our family ski's, we've worked it out so we can take our RV and I can stay in the RV and see the kids and him at lunch. I'm working on it but it still catches me by surprise, the sadness and grieving.
There is something good that came of my sadness last night. I am going to throw myself into "myself" this year. My daughter starts 8th grade on Sept 5th. I am incredibly blessed and plan to join a gym for water aerobics and weight watchers while she in school. I've gained weight since I got sick a few years ago (diagnosed with RA last June).
Thank you again so very much for your kind words. They mean a lot to me ❤️❤️
Lovely to read this post cheshcat. Its a time of reajustment for you. I think maybe that never stops but maybe we became more familiar with the feelings and process. How lovely to have that conversation with your oh. I completely understand the weight issue, i so need to do something about my weight. Im on steroids etc etc and so tired I cant get motivated to loose weight. Well done to you and thank you for your post. Let us know how you get on. Take care. 🙂
Thank you Ruth! In the beginning I thought I was sick, like I should rest, and once I did, I would feel better. That packed on weight. Then I had my hysterectomy, thinking that would cure me (I needed it anyways and glad I had it done before I got sicker!!). That kept me in bed for 4 months. Then the first diagnosis and I've been on/off steroids for over a year. Having him leave though, gave me the permission I needed to literally just focus on ME. I think I'm the last one to think this was important. Onward and upward!!
Some days though, damn do I get blue!!! I never use to do that and I'm not use to it.
We are not programmed to think of ourselves first, but we need to at times and that helps those around us. My family were so worried about me (as most of our families are) I promised to be honest and say if im struggling and to look after myself. That really helped them and me because they dont fuss as much. Saying 2 things about that, firstly I dont always say how rough I am and secondly we are all adults. Im very fortunate that RD didnt fully start untill I was 58. So that is very different to many others like yourself. It is so different if you have younger children.
Look after yourself as you would want others to look after themselves. 🙂
It's been a hard road for me on this account. My husband and kids want me to only focus on me but I very much miss doing everything for everyone. It makes me feel like I have nothing to offer. In the end, it was good he went. I think for both of us. I'm not sure why it took me so long to get to the point that I gave myself permission to only do "me". I was really blue that night I wrote this! I had been crying for hours off/on. But I think it did help me, in the end. Reading all your replies was so helpful!
Hi again Cheshcat, I am very like you in doing everything for everyone , giving and helping. It's the way I have always been. I know how you feel. That's the changes that make us feel so sad sometimes. I don't have boundaries and struggle to say no to people who ask for things I can't manage but I had to learn fast because it was really flooring me energy and pain wise. I accept I have to pace and take more rests. I am sure we will all feel better by way of support and understanding on here in addition to hospital care. Stay with it. It's totally fine to have tearful days, I do and it helps.
Shalf I so very much relate! I had to make really hard choices, really hard. And sometimes I ended up just dropping the ball instead of being upfront that I couldn't do it. I can't believe I've become a flake! Admitting to myself I can't do it seems to be the actual battle. I'm getting there, slowly, so very slowly!
Try thinking of the whole thing as a temporary setback. Imagine having a broken leg/ankle and not being able to climb a hill or walk up some stairs. That could happen to anyone RA or not. A person would be forced to not do things as normal because of injury. Settle your mind by taking each day slowly as you say. A lot of how we feel stems from the way we think. There are loads of people on here who led active lives ( including me) and I will again and so will you. Less stress- good diet- exercise. Be kind to yourself in the same way you are kind to others. We are all here with you pet Xx
I concur, we all have these days, that’s why this forum is great. I try to focus more on what I can spend more time on as opposed to what I can't as it can get you down. I didn't go on holiday with family as couldn't walk, felt gutted. I spent more times with my cats who bring me great joy. I hope you are feeling better Cheshcat. The sun shall peek through. Virtual hug. Hessie
Please don't beat yourself up . You are loved regardless by your partner and your family . They see you not your condition it took me a long time to see this . When my son was little I struggled to pick him up and thought I was an awful mum . He's told me recently how much he loved it when I went to his football matches when I could as it was really hard at times . I felt guilty that I didn't do the things I should have done with my husband and I worried so . I have now realised that a lot of the worry was in my mind and so totally blown out of proportion . You aren't super human but you're loved and wanted warts an all . Thinking of you good luck tomorrow 🤗💐
We know how you feel. I was the 'go to' person in my family. I hate what I have come to, but I have to look at being the best I can be now. It is a hard and painfull process that we will all get through and at times have set backs. We can do this....you can do this. 🙂
You are all so sweet! I can't even tell you how much your words mean to me!
Well, rheumatologist took me off sulfasalazine and ordered a sleep study. I see him again in 6 weeks and we will go from there. Again. I'm now only on the luflonomide for the RA. He said he doesn't want to give me plaquinil because he doesn't want to cover up Lupus if that is what it is (he said I don't meet the clinical criteria right now). And he doesn't want to do methotrexate. I have always known I have a narrow airway and with the weight gain, he did say it is a factor with sleep apnea. He wants to fix that first or take it off the possibilities list.
I do like him but damn I wish this process was faster!! I really thought last year when I was diagnosed with RA, that that was "IT", case closed. My neurologist and rheumatologist still keep looking for a second thing and I guess I should be happy about that but I really just wish he'd treat the one thing we know I have, RA, more aggressively. More tests. Always more tests. You would think there would be no tests left to give me!
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It's Ok to be sad sometimes. 
For those having a hard time right now!
I have severe pain but hardly any swelling.
Having a down day..
Comment has hit me hard
