Having an awful time today pain wise. Everything hurts, well it feels like everything hurts.!!...kness, shoulders, hands, etc etc u know the score!!!
After a suitably frustrating and sedentary day doing nothing apart from watching tv and crying when lifting pillows on my bed hurts!!!!!!!! I texted a family member who I receievd a missed call from explaining I was in a lot of pain and didn't feel up to returning the call..NOTHING!!!!
I then texted a friend who had recently returned froma long holiday back home......welcoming her back..... She knows full well I am ill and haven't been working for 4 months .....but I didn't mention it just wanted her to know I knew she was back .......and again NOTHING.........
As I write I know I am feeling really sorry for myself but I can't help feel cross and isolated that my loved ones have no empathy for me at all.........again I know I shouldn't worry about these things as people who are not in chronic pain can't possibly understand the experience and I shouldn't blame them , but I feel cross
I know focus on half full and not half empty and all that.....but I guess today I am feeling the isolation more than usual.......what are people's experience of this???? Do you have similar experiences with people/ friends /colleagues not understanding????
Sorry for moan guys and hope your day was better than mine! 😄
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Phoo2
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Sorry to hear your feeling so sore and poorly. I have to say , whether Unwell or not, I'd find it rude if people couldn't be bothered responding to my texts etc!
However, it may be that they're busy or otherwise
Occupied. If they're true friends/ family, I'm sure they'll get back to you at some point soon.
And you are more than welcome. I hope you are feeling even just a tad better today? Although it is really cold today ( Scotland!) the sun is bright and I have to say, lifts my spirits.
It's days like today, that I feel Optimistic about the future where there'll be much more effective treatments for us and we will live in a world where people are more compassionate and understanding of others.
I went back to work for two weeks and then went of sick again. My brother contacted me once. Fortunately I am supported by my hubby and mother, but it would be nice if he cared more.
Hi phoo2 first excuse any typing errors but I am sure you will work it out I am from australia I understand what your going through people are who they are but remember one thing you know your own situation sometimes we dont understand things but what we do understand is know matter what if you know you have been there for someone else and I am sure. You have thats what counts stay. as positive as possible remember there is always someone else out there that we can be there for good luck my friend
I know exactly what you mean - a perfect example of this was a very close friend of mine not long after I'd been diagnosed. I'd been there for her for years,at all hours of the day with her man troubles at the time,and anything else she needed help with,even at 7am on sun mornings when she was in floods of tears on the phone!! After all,that's what friends are for,isn't it?! Turns out not,as when I did finally manage to track her down for a text conversation after her making excuses as to why I shouldn't go to hers for months,we were ttexting on the phone,having a normal catch up,when I happened to mention that I'd spent the previous day on a trauma bomard in a&e after a horrific fall from the top of my stairs to the bottom.... now most people would either just ring and ask 'omg,are you ok? What happened?' Or something similar.... err,no,turns out you find out who your true friends are when you're really ill and can no longer give lifts anywhere.... our text conversation ended after that last comment from me,and I haven't heard a thing from her since... that was nearly two years ago now!! Also,the rest of my so called friends,who only live about 10 mins away,one by one they've dropped like flies too.... like others have said,unless you've been in a situation where you don't know from one day to the next if you can get out of bed,or even have the energy for a phone call,then people really don't understand what you're going through,and just think you're milking it(or so it seemed in my case!) so because I had to cancel one or two planned group dinners.it seems that it cost me my so called friends. I even have struggles some days with my partner,who of all people I thought would understand,but even now I sometimes get my illness chucked back at me in an argument because I've not been able to go for dinner when he wants - he forgets he works nights so when he gets up,it's usually time for me getting ready to go to bed(I know I deserve better,but that's just a very small part of our relationship.)End of the day,it's things like this that make us realise exactly who our true and real friends are ,so moan away,as I'm sure we can't be the only ones who've had similar experiences over the years?! And as for a sedentary day watching tv,some days I don't even have the energy for that,and I often find myself watching the same programmes time and time again as I've usually fallen asleep for at least the first three or four attempts😂
I don't think you're being selfish at all - moan away,we know what you're going through,so completely understand.
I so agree Njk, I really found out who are real friends during the 18 years I have had RA.
But there are the good guys...those who will pick up a prescription in the evening after they have worked all day. Or those who think of you & make extra portions of meals for your freezer! Or those who will drive you to hospital appointments .......or those who will listen & offer a kind word.
As for the others......they aren't worth even one thought. Over the years when my my "droppers out" have suddenly reappeared I have developed amnesia as to who they are & say I'm too busy to see them.....even if I'm flat on my back in agony,
It's hard if they have been really close in the past.....I just hope they learn a lesson & are kinder to their next friend in need. I don't miss them one bit now.
It's so true - it's amazing the people that you thought you could depend on completely are the ones that let you down first - yet they're the ones that only have themselves at home too,so it can't be said about being busy or just with kids etc. I just found that I was the one constantly trying to keep the friendship going by texting to try and arrange catch ups,even if I felt like death,as I thought they were true friends,but I found out the hard way. Still,as you say,they're not worth worrying over - i have more than enough crap to deal with on a daily basis to worry about why her latest fling hasn't rung back after she slept with him on the first date(think she answered her own question on that one 😝) mo,much better off without people like that in my life - I always said they'll need me before I need them as I always used to do so much for them,but she's obviously found herself another designated driver for what used to be our group nights out!! I'll stick to my trusty cats and dog.... unconditional loving and no judging if you can't get out of your jamas all day either 😊
Aw don't give up on humans completely. I know now who my real friends are & I can enjoy their company when I'm well & I know they are there when I'm not.
I live alone & when I'm going thru a bad spell I am glad I don't have to worry about anyone worrying about me hovering & trying to help!
I haven't given up on humans completely,just the ones that don't deserve my time. I've learned the hard way while being ill who my true friends are,and even though one of them lives 3-4 hrs drive away,I know I can rely on her to always be on the other end of the phone,even though she's not long split with her partner,has a teenager and a young child,but will always be there for me,as I've also always been there for her. I've also got another friend that lives about 40 mins drive away,but as he has huge spinal problems(has an implant in his back after several other surgeries didn't work) he completely understands where I'm coming from on the chronic pain front,and even though it's a drive away,we always look out for one another,making sure when one's I'll that they don't need any shopping,medication picking up,a lift to somewhere,or even if it's just for a friendly ear on the phone.... we've had our differences over the years too,but as true friends we've worked them out - because our friendship was worth it to both of us. He's always been like the big brother I never had(I'm lucky in that I have another male friend that I class as another,older brother too )this one has a young family,and lives a couple of hours drive away,so like Sara,we don't see anywhere near as much of each other as we used to,because they've both got their own families,but I know 110% that if I needed his help,he'd be there for me in a shot,and he always calls to check on me if he hasn't heard from me in a while - it's honest people like that that I invest my time and energy in,we all know that we have our own lives so don't meet up like we used to,but that's life,and it's certainly not held against anyone, because I know in a heartbeat i could trust any of these three with my life,and vice versa - i've been known to just get in the car on a Friday night and do a 4 hr drive just to sit and listen to my friend cry..... because that's what true friends do,they're there for you when you need them most😊
I can understand how you feel as all my family live at least ninety miles plus away from me so only communications we have are through technology some days it would just be nice to hear another voice instead of a text message or f/b message ,I understand whilst I'm stuck here in pain less able to get out and about there all busy with young families and everyday living it's a case of out of sight out of mind I don't think people intend to ignore us I think they just get tied up with there own every day busy lives families tend to live miles apart these days unlike when I grew up families didn't move away so much I hope things change for you soon
I hope that is the last time that you come here and apologise for yourself, concerns like you have are why all of us are here for the others and the abandonment you are experiencing makes you wonder if you have RA or leprosy. You have nothing to apologise for. Im afraid very few people get the support they deserve but in defence of the nay sayers and avoiders some just dont understsnd and others are frightened by the changes they see in someone they know. I often feel i am fairly lucky in being on my own to deal with this disease because at least i have no one to be responsible to or for and i can rest when i need to. But i feel desperately sorry for those who have children to look after and are on their own or with an unsympsthetic partner, the turmoil that must cause is something i wouldnt wish on anyone.
DArling unless you suffer like we do people have no idea what its like. Don't be too dissapointed darling it the nature of people. Feel sorry for yourself for a little while biut don't let it rule you darling,wake up today with new optimisson and go ahead and try to forget about it. Thats the good thing with f/book and sites like this there is always someone to talk to and i have to say without my laptop i would be lost as i don't work anymore and go out even less this winter and my laptop has been a lifeline as there is always someone to have a laugh with.xxxxs
I'm so sorry you are hurting physically and emotionally. I've gone through similar things as you. I've even been told, by a friend of 38 years, to "get intouch with my inner child, and give her a hug, then you will be better"
My boss told me to eat parsley, because everybody knows parsley cures RA.
I am just so sick and tired of ignorant people. I don't want to explain or educate what RA is to people that don't care. It's like talking to a wall.
If your friends apologize to you because they didn't know what to do or say about your RA, then forgive them. We've all said or done stupid things that we wished we didn't do or say. We all deserve to be forgiven for our ignorance when we ask for forgiveness.
As for your friends that don't apologize....well...life is just too short to waste your time on them. You will make more friends in the future....like me Hello friend!!!
Hello friend! That's so funny....a 'friend' just told me to go on a juice diet.....I know she means well, but well how the freakin heck am I supposed to juice with my hands all swollen up and and second I have tried every detox and anti inflammation diet going and know I need hard drugs!!!
I wish diet could resolve things.....all my mum bangs on about is turmeric and ginger ever time I phone her.......like a typical Indian mother she thinks food cures all.......I have had this condition for over 20 years and she still says the same thing....yes there are ignorant people around and some of them are my friends and family!!!! Arghh!!!
Well here you can moan away and feel as sorry for yourself as you like and we will not only listen but also reply to you in empathy and understanding 'cos' we are the bees knees when it comes to 24hour support! 😎 And long may we keep it up.
I am very fortunate that my family are very understanding and when I couldn't go to my sister's the other weekend because I was to fatigued after a week's work she was so understanding and said they would come up to me when we do meet up if that is easier - she's always been a fab big sis' and sometimes I forget to tell her this!
Friends? I've always been a bear of few friends and still have those few friends in the main.
It really is a horrible condition and I know I shouldnt blame others for not understanding when I'm sure I wouldn't understand if I wasn't in this position. You can't possibly understand it otherwise and that's no fault on anyone's part.......but thank you for your kind words...I half expected someone to say buck up and get on with !!!!!!!! ( critical parent there!!!!))))
I guess I'm just going to have to expect to not be able to maintain all my friendships..... hard to accept sometimes...
I think you hit the nail on the head - Unless they have gone through something similar, they cannot possibly understand... And maybe they just don't know what what to say... My husband didn't believe I was as bad as "all that" for quite a while...
That's so interesting u say that.... It took a long time for my partner to understand it too......about 6 months of agony for me.....! Pj think he thought it was all in my head and he thought I was being lazy
Yes I always feel that way. I guess they all mean well but your right that they don't understand. I try to not think about it & just do things that I enjoy doing & can still do. But it's darn hard not to feel angry that they can dismiss the way that our bodies feel. I guess it's all just part of human nature. I hope u just keep moving forward & keep taking those steps to recovery. Richgirl🌻
Hi I'm the wife of someone who has RA, he was diagnosed 3 years ago & he's now 51. After trying the regular meds he takes mxt weekly & cimizia inj fortnightly. He managed to withdraw of steriods & life was was going well. His job is fairly physical, a decorator. A week before xmas he came in from work & felt he had a virus, a visit to GP he was put on antibiotics then few days later had deteriorated- all over body aches & sweating. He was in hospital xmas eve with sepsis of unknown cause & discharged 10 days later. At home he was still poorly off all drugs for nearly 4 weeks. He got better from his initial infection but all his RA flared up badly & he felt back to square one. We spoke with RA Nurse & he re started his meds plus 15mg steriods - 2 -3weeks later joints still bad, his says it's like they feel they will shatter as they feel so fragile. I've contacted RA team & he now has an appt early next week to sort out his symptoms to get him sorted. My husband often feels his drains me but I keep telling him u have to let me know how u feel otherwise it's difficult to no how to help u. Friends often see him as normal looking but we tell them about him problems & that it is an invisible disease & they are understanding but soon forget because he looks well/normal. We often arrange meals out & have to change plans, but I usually arrange for friends to come to us for a takeaway at short notice if needed - hubby might go to bed early but that's not a problem as I explain to friends & I stay up with them, as a partner of an RA victim I also need to socialise. I also understand the frustration of RA but try to keep him up beat & look into best ways to manage this - hubby doesn't do this, his doesn't like to read about RA, but he's still lovely so I do this for him. My advise is tell friends & family how u feel but push the RA specialists to sort your symptoms out & treatment, if u don't tell anyone u won't get the help/support u need
You sound like an amazing wife......thank you on your husbands behalf for all the support you give your hubbie..... He needs u and u r there......very special 😃
Thank you Phoo2, hubby went to an emergency appt with rheumatology consultant that I arranged for him today, I was working so couldn't be with him - they have temporarily upped his steriods to 30 mg to get him back to normal so he can get back to work & feel better in himself. He's planning on working later this week so fingers crossed, only a few hours gradually so he can back in the swing of things - his customers need him & he's getting bored at home so it should perk him up. Although he's been cooking dinner & potting around the house finding odd jobs he needs to get back on track with what he enjoys & does best otherwise I feel he will get low as he's normally a active man. Off with his furry slippers & on with his work shoes on & hope it works out over a period of time otherwise will nag rheumatology team again - they probably dread me contacting them but I always do if needed & never feel bad about making hubby able to manage his RA xx
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Hello friend!!!
I feel like having a good cry....
Disappointed 
How do I carry on? :(
What next?
