Hi guys, been awhile since my last posts, I think 8 months ago. Sooo… Still not taking meds, although gave the methotrexate a go, horrific experience, so it’s a hard no… I was already barely 40kg and when that came down to 36kg, along with all the rest of the beautiful side effects (I’ve developed very personal relationship with our toilet as she was my best friend during these times… sorry if tmi”). Afterwards I started on very exclusive diet, which I totally hate, but I reclaimed most of my body back, I even started running again sometimes, but my hands are still not giving in… and I’m not eating as healthy as before and still not ready mentally to exclude everything that I know works for me, but obviously will have to… But I’m again at that moment with the acceptance… I thought I passed that bridge, but now it’s really driving me crazy and I’m really really angry at… we’ll, everything. Why I’m back to where I was with acceptance? Because my hands hurt more than before cos I ate a cookie or two now and then? Or because I’m simply stupid and had to stick with the healthy eating? But, as a normal human being, I’d like to have that double chocolate chip cookie… I know what most of you’ll say, I know I’m foolish and have to be grateful, could be so much worse… but I’m not… I’m just angry, disappointed and feel like punished. Perhaps the additional health issues, nothing serious I’d say, but I hate going to doctors doesn’t help and the fatigue is back with vengeance…
RA - trouble with acceptance again and the doctors ar... - NRAS
Its no fun being us id it darling. As to acceptance i am not sure i have even got there yet and i have had ra for 18yrs. Hugs from me.xxxxxx
I was afraid of that answer, but it’s nice to hear it… so I’m not going insane I guess, just part of the process… many thanks for sharing… I can’t imagine living with this 18 years, I just have it for nearly 2 years… so knowing that I actually never accepted it might help understanding my feelings and how to deal with them.. thank you again, much appreciated!
Acceptance comes in waves for me. One day I can cope and another I ma angry and sad about it all. Just hoping that the coping days become more frequent. xx
Same with me, just doesn’t last a day or two, but weeks or months… and I’m under the wave now and have to find a way out. Perhaps the fact that my GP suggested that I’m peri menopausal (tests not ready yet…., but I know it’s coming eventually) did not help at all and if I am the hormones are definitely getting the better of me! I even have a referral to psychiatric evaluation because in one of my “episodes” I asked my GP - ok, how we deal with this? She knows I react very badly on synthetic hormones, even though suggested it after the tests if that’s what needs to be corrected and I reacted very badly… What!?!? I’m not going crazier than I already am?!?! I just can’t afford it!!!! What else you got? As a last resort, if the suggested hormonal therapy doesn’t work there is a possibility I might need to hysterectomy, which I said “lets do it, don’t want hormones…! Then my husband took the phone out of my hands and continued the conversation… I know it’s not funny funny, but this is how I get when under the wave… got to learn how to that in a day or two, rather than months for the sake of my husband.. I truly hope I’ll be able to cope better soon, don’t know how, but have to!
I'm sorry you feel this way but a number of things occur to me firstly MTX in the amount taken by RA patients is tiny and not in the toxic dose its used for in other illnesses. My friend a n Oncology Pharmacist said they should just rename it !lol and most side effects do wear off and its possible that another medication will help you. Secondly surely you're not surprised that your in pain if your not taking any medication which might and can put the RA into remission and you can carry on with a normal life. Thirdly RA is a disease which does not just affect your hands etc but blood, lungs and your risking some life threatening conditions without being properly treated by your medical professionals. Fourthly anger can be a positive thing if directed into doing something again. I think its vital to talk to your RA team and ask for help as you know it won't just get better on its own.Finally what is the point of a diet that makes you miserable and add to that fatigue and pain and life must be just miserable so go back and explain what happened with the MTX and ask if there are any alternative medications to take and that medication might just work for you.
I really do feel a lot of sympathy for you as RA is a disease that won't go away but it is treatable, and I don't know anyone who enjoys taking medications but if they get your life back on track and fun again then why worry about them. I've been in remission for years and RA is a blip but not a catastrophe and my biggest fear for you is that you might incur permanent damage and so do read up on the NRAS website about the various medications that are available. Not all people have side effects and some like me did but they were temporary and the medication once working put the RA into remission. Whatever you do don't waste time on feeling sorry about something you can't change and get some help and you can feel a lot better quite soon.
The first few weeks were brutal on MXT - 10mg weekly… even when I managed to survive, god knows how, my body kept rejecting it. I’m really a tough person, mighty not sound like one but I am. My husband told me if it was me I’d stop sooner, but I had to try. It didn’t touch the pain at all, just wrecked everything else and I couldn’t hold any food or liquid most of the time.. I’d rather die than go through that again. I’m just shaking off that experience and will be in touch with my rheumatologist to ask him what’s next, I’d really like to see if I’ll qualify for biological.. and if I do I truly hope the experience will be milder. With this pandemic is hard to be properly monitored… yes, you are right, my hands might hurt more because I’m off, I understand that, but I’m back to nearly 42 kg and look like a normal human being, not like recent survival of the Holocaust… And yes, I’m worried sick that it might already affecting other internal organs so I’ll insist on full assessment, scans and test, I just have to know and than I’ll take it from there. As for the anger - I think I’m a long way away of learning how to channel it properly, someday I can with running, somedays the tiniest stress sets me of and I go ballistic… working on that though!!! Everything you say it’s right, I’m not giving up, just in that crossroad questioning everything and getting angry at everything… I’ll certainly be in touch with my doc to discuss next steps, just can’t make myself do it cos I don’t want to… truly hate going there… but I will, I promise. Thank you, your words mean a lot to me, you are right again- I have to stop feeling sorry for myself and take the next step, it is what it is…
I don't think you're feeling sorry for yourself just its normal to react to something which changes your life. But RA needn't change your life when you find the right medication. In the UK you must have tried 2 DMARDS including MTX before you can move on to a biologic. And to be honest LEF was great for me for many years. Side effects for a while then remission and apart from a small pill every day no one would have known I had RA. After the kidney failure I was prescribed AZA it worked well but the RA got stronger and so Benapali was introduced. The combination is good but no RA medication gives you more energy I only wish they did, but they do relieve the inflammation which makes people feel better. BTW when you hear the term chronic it just means lasting a long time, I used to think it meant worse and I felt worse. S, o don't be frightened I'll always have a chronic disease but its not painful and my hands and joints are normal looking. I failed on MTX it made my hair fall out in handfuls so was stopped and I felt like I was on fire inside it was dreadful but neither LEF or AZA did this. So don't ever give up, you can deal with this disease and whip it into the background just have to keep on going and you will find a medication which suits you and get your life back to normal, but it might take a bit of time. All best wishes and stay angry at RA but not yourself because you will find that medication that works and works well. xx
Best advice ever. You've explained it in the best way possible. If it wasn't for this forum and the advice lovely people like you have given to RA suffers I wouldn't be as well as I am today. Probably wouldn't have even considered Mtx let alone try it. Keep up the good work 🥰
I’ll do my best, truly best advice ever! I still can’t control or channel my anger so still at being angry at everyone and everything, but I hope I’ll get there soon
Don't feel bad about being angry. I've been there too. I felt angry with everything, at my family for expecting from me as I couldn't even take care of myself, at my body for not working properly and letting me down, at the pain the stiffness, not being able to do anything We all have been there. Until you don't start to get better the anger will be there. It's normal. RA is a really difficult disease to accept and deal with. I hope you find the right meds and can start to get better. You will get better ❤
I believe many of us struggle with acceptance of chronic illness, many of us on the forum will, I imagine get where you are coming from. It is difficult living with chronic illness and it is ok to say it.Popularised with Covid...it's ok not to be ok. It takes strength to say that you are not ok, especially in this judgmental world we live in.
When I'm feeling not too bad, I accept lock stock and two smoking barrels that I have autoimmune disease, when not so good, like now, and similiar to what I think you are saying, I really struggle, especially when I hear of and see my contemporaries living the life I had planned for, taken steps towards retirement for, moved house for then wallop I'm sitting on a couch and they are healthy and active. I often feel I live vicariously.
People saying you've just got to get on with it, isn't helpful and lacks emotional intelligence / empathy in my view, I don't listen or engage with that kind of talk anymore. All it achieves is making you feel worse, as if you are not coping, when in fact you are, just voicing that things are a bit difficult just now (I include many medics I this type of talk).
But, I guess with chronic illness self regulation is the way forward, but not always easy to achieve and can be a long struggle. From what you write , you seem to be going along the path of self regulation, but as you know, the path isn't straight and we often fall off for a bit.
Anyone who says they haven't are telling porkies, me thinks.
Do post on the forum, people do understand and will listen. It is cathartic to let it all out and realise that you are not alone. 🌼🌻🌷
It is a struggle, true… but no one seems to understand. My own family (mum and dad first told me to stop being dramatic😡which really pissed me off…). Than they did some reading and of course now are scared to death… no shit, right? Excuse my language… Definitely the fact that t can’t live the I’ve planned for plays a big part in the situation, you are absolutely right. But I’m determined to start at least some of the things I planned to do after baby number 2. And after I sort myself out…
Thank God that there is a place like this for rum where I can rant about and be angry and emotional… my husband is truly truly supportive, I wouldn’t survive if wasn’t for him, we are together since high school, but I know he can’t fully understand it… he still believes that healthy eating and sport will “cure” me, which I know it’s denial and doesn’t want to face the reality and I’ll leave him to get to the reality on his own terms… so wish me good luck with whatever they prescribe me next and once again thank you so much for your support, it really makes me feel understood and that alone helps a lot!
My partner and most of my family are great, my mum just doesn't get it and continually offers advice on such things as eating honey and going for a long walk, some days I can't put one foot in front of the other. I still find her 'advice' upsetting 4 and a half years on. My circle of friends has decreased too, but the ones that are still with me are brilliant and the ones who aren't I'm better without.
Pre pandemic a friend visited me from Australia and brought me a box of over the counter (OTC) anti inflammitory pills (snake oil type stuff). I just thanked her and said no more. Weeks later when she was back in Australia, she messaged me asking if the pills had worked as she could give me a web address from which I could order them.
I had to come clean and say that I hadn't tried them, my condition was complex, I'm on state of the art, advanced therapies...biologic medication and that OTC medication wasn't appropriate. I had a good rheumatologist blah, blah, blah.....
A kind thought by her to carry the anti inflammatories all the way from Australia, but the naivity that OTC stuff would be more effective than all the meds I take and specialist rheumatology input astounded me (she is an educated woman, working in a big job).
I don't expect people to know everything there is to know about RA, but an understanding that their 'advice' isn't an improvement on the rheumatologist's treatment isn't a lot to ask for.
(I wouldn't offer advice to an electrician or NASA scientist ! Why do people think they can offer medical advice ?)
Oh god… the advices… I don’t know if I’ll ever be able to simply not let them get to me… Everyone seems to know someone that knows someone that cured himself/herself from this and that, try this herb/pill/sport/whatever other stupid thing you could think off… And god forbid if you try to stop them at the beginning of their miracle story… But I’ve got a tactic now, depending on the person I start giving my unasked advise on healthy eating and that being overweighted it’s not good for you or perhaps you should drink less etc.. It works, I can assure, don’t care if they like it or not.
As of for friends - my circle was pretty tight before the RA, I have the tendency to tell what I think and the older I get the less patience I have, so the once that was “good friends” eventually got the message and left me alone, they don’t even know I have RA now, if they knew they’ll all try to get in attach again - who doesn’t love a good gossip… And besides, the common idea would be to enjoy the fact that “she got what she deserved” or even worse - I’m being dramatic and seeking attention. Safer for them to keep their distance So I have just the right amount of real friends, just a few, but I don’t think I need more… sometimes I get lonely as even they do their best to be there for me I can’t just call every time I feel like crying my eyes out… but I have you guys Thank you to all of you!!!!!
I'm intrigued, what is your tactic ? 😉
Not sure how to name it, but probably “giving them a taste of their own medicine” Of course, depends on the person and if I care if what I say might be offensive- some of them are really nice people really trying to help, they get a milder version, but those who know it all - get a spoonful
I've found no one understands you more than a fellow person with inflammatory arthritis.
Here is your place to let it all out, say how you really feel and know you will be understood.
It's a waterfall of emotions having this disease, we are here for you x
A waterfall of emotions, I like it.
But until you accept your diagnosis, & find a way to believe there is a treatment that will suit you….your head won’t be in the right place to go forward. We all accept illness in a different way.
Out of the blue a mammogram showed I probably had cancer…when it was confirmed my immediate reaction was…. I want rid of it…my surgeon accepted my decision & I had immediate surgery …..later we had a discussion about how people accept a diagnosis & as he said…..many of his patients want to go away to think,about it…..but once diagnosed thinking about it is not going to help ….. you need treatment….I found cancer easier to deal with……I already had RA at this point, so I’d had a trial run in acceptance…but with cancer there is usually surgery …so things happen & you feel as if you are getting somewhere…& you can see a future.
But with RA it can be a long, slow, slog….until you finally find the drug to suit you……so unless you have it in your head to accept your diagnosis & that you will find that drug …how long might it take?
It is easier for some than others..but everyone can get there.
I truly don’t know how to get in my head and accept it, but you are 100% right… I’m so sorry to hear for your experience… I really hope I’ll never have to deal with that… But I’ll find a way… if not for me, then for the sake of my family, I’ve got two young children and lovely husband and they did not signed up for the crazy bitch I’m turning into so I gotta get a grip on myself! Thank you!
You are not a crazy b…….for anybody - being diagnosed with RA is a real wake up call ….especially as they have always thought it’s an old people’s disease…& have no idea how really distressing it can be.A lot of people who post of their bad experiences here are not in a good place because they are still searching for the right treatment…but once they find it …..they are off….. leading a good life. So don’t dwell on reading how unfortunate a lot of people are…….
In fact I was lucky enough not to be diagnosed until I had just retired….& I can honestly imagine how difficult your life must be with children to look after ….but on the plus side you are fortunate in having a supportive husband…who wants you to get the right treatment…..if it had been him who had been diagnosed you would have supported him wouldn’t you ? So maybe thinking that ….you can begin to accept you will find the right treatment…& get almost back to how you were pre RA?
I know right now when you are really suffering that is difficult to believe….but it will happen…….so put on your big girl’s hat…..& give the drugs a good try & start to accept things will get better….but not overnight I’m afraid.
Please don’t put yourself down for not being able to accept you have this rotten disease …just deal with it the best way for you. After all…none of us signed up for RA did we….& most of us are proof there is the right treatment for us…….you just have to wait a while to find it.
I know I’ll find the right treatment eventually… but I don’t see myself accepting this any time soon… I was 39 with a 4-5 months baby girl… before RA I had the energy and will to move the earth… I’m an ex sport gymnast, ex fitness freak and a runner, I love exercise and pushing myself to the limit, every time I train I compete against me… now I am a shell of my former self and I have to accept the fact that this is how it’s going to be from now on… I’m sure it’s because I’m at the beginning of my journey I have these difficulties and I want to shake them off ASAP and don’t know how… with time perhaps… I was gonna start Brazilian JJ, horseback riding (did it before, not a chance now) and shooting lessons.. none of this is going to happen and I know I’m not doing myself any good thinking that way, but damn it’s not fair😰 I’ll find other things and start building myself up from scratch, but still working on the blueprints😁
Agree, they simply can’t. You look fine, even great, I even got asked what’s the secret of my diet… while I was on MTX.. the poor lady got one of my evil looks and a reply “chemotherapy”🤣😂🤣 I know, I know- it’s not chemo, but who on earth would envy someone that looks like it will break any time soon… of course that ended the conversation, she was so shocked she didn’t manage to apologise or say anything, just went bright red and exused herself… my husband then told me to take it down a notch, but I couldn’t help myself… we were at a gathering and I had to put my happy face and pretend everything is fine and she just got to me… It is a waterfall of emotions, what a beautiful way to describe it! Thank you! And thank you all for all this support- there is no other place that can offer anything even close to what you guys offer here as a support, thank you!
Would you be willing to try an alternative medication? I totally get how you feel - that was me nearly 3 years ago. I did the very restrictive diets too but they just didn't help my RA and I lost weight I couldn't afford to lose too. Only medication has helped me and as someone else has pointed out in an earlier reply, untreated RA doesn't just affect joints but sometimes heart lungs etc too. So if I were you I'd speak to your doctors again about trying alternative medications. Just to give you some hope, I am on medication and, after going through just about every side effect known and some that weren't(!), I'm now pretty stable and able to do most of what I did previously. That said, I still have 'angry, fed up' days when I think why me - but the opposite of that is why not me I suppose. Hope you get some help and feel better soon. Good luck x
I'm now on meds 8 and 9 (dual therapy) and feel the benefits. The others just didn't work or the side effects too bad to deal with.
I'm pleased I preserved, but often felt like giving up on all meds.
My friend had breast cancer and lost her life to it. In a conversation not long before Sue died we chatted about the 'why me' and she said something which remained in my mind that she was just so glad it was her and not her daughter. I now understand as do feel the same about my kidney disease and am very glad its not my son, DIL or granddaughter. Life chucks the curved balls doesn't it ? It could have been worse as here at least we have the NHS. x
Your post left me in tears for hours… but i needed it… I needed that “slap on the face”. Just the thought that one of my kids might be here instead of me drove me literally crazy… and I’m truly happy it’s me and and not them or my husband. Thank you!! I’m so sorry for your friend… but her words, which you shared with me, will stay with me forever…As for the curved balls - I really hope there aren’t too many ahead… I’m not sure how much I can take more… Thank you!!!!! Really thank you for sharing this with me.
That is very true….when I had cancer I was so glad my mother wasn’t alive to worry about me.But one of her sisters who was in her 80’s & I & a cousin I were caring for…told me I “ lucky to get it young” and complained long and loud I didn’t drive two hours each way to see her when I was driving to the hospital daily for six weeks for radiotherapy.Sometimes you just can’t win!
Your Aunty obviously didn’t deserve you.
She was old & alone & her generation went through two world wars & were not used to us softies who take a break when we are ill.She ended up living to 97….99% of the time quite content.
But I must say I felt like throttling her when she told the rest of the family I had no stamina!
Sorry to hear this. I can’t recall what was happening to you before but are you not able to have something other than Mtx? When I first got rheumatoid I went from 8 stone to just under 6 as all my muscle was “robbed” by the RA I was told. Also 10 years later I lost the same weight again when I got an over active thyroid which meant everything I ate speeded through me. Or you “feed the thyroid” as they say. Are you seeing a consultant/doc at the moment/being monitored?
We’ll, not much except being a total mess I approached the problem with herbs and healthy eating as I could not force myself to start MTX…. I got better just with diet and exercise, but eventually I started MTX - never again. Just no - prefer to die.. Not seeing anyone now due to the pandemic but I called my rheumatologist and waiting for a call back to discuss next steps and I want full tests and scans again, not just telephone consultation. I want to know if there is any damage to my joints, last time there were none, so I hope that’s the will be the case this time too… and I hope I’ll get biological, heard good things about them, hope I’m not wrong!I’m building back my muscles slowly, I just get to get out of that self pity and brain fog and start actually doing things other than staying in bed and crying…
Interesting re your thyroid- my last tests, just fey days ago, were 0.4, which it’s said should be normal, but than from 0.1 to 0.4 is not, so who desires where exactly 0.4 fits in - normal or not? cos it’s on the lowest possible “normal” number… Any suggestions will be greatly appreciated! Can the MTX messes with my thyroid?
I am sorry I can’t advise re your thyroid as I only know about hyperthyroidism which I have and as you say even if TSH is deemed normal it’s so close to being outside the required range. I think they will look across a number of results and see the bigger picture and what the norm/pattern is, unless your thyroid suddenly goes really out of sync. I do think you need to speak or see a rheumatologist .. easier said than done .. I waited almost 18 months to speak to mine on the phone although I did have an infusion as usual and speak to my nurse on the phone. I was never told Mtx affected my overactive thyroid or vice versa.
My results will be ready tomorrow and will speak with GP, let’s see how this will go and hope my hormones are fine for now🙏
Wishing you luck. 🙏🏻💗
Thank you. 💗X
Well, everything looks fine they said except my prolactin levels are very high- as if either I’m pregnant or breastfeeding - and I’m done with both…🤔 will discuss with my GP next week, whatever I read on it, it only scares me more so I’ll stop reading…
Yes let the GP explain as you could misinterpret and make yourself stressed. Try to relax over the weekend as you can’t speak to anyone until Monday. I hope your doc can advise you early next week. 💗
Yeap, stopped reading and just came back from the first soft play with my kids since at least year and a half!! I’m exhausted, but truly satisfied that I managed to do something fun for them and now I’ll be definitely joining my 2 year old for an afternoon 😴😀
I completely empathize and get where you're coming from, although I can't fully understand what it's like to get the diagnosis since I'm seeing a Rheumy soon. I also hate doctors, and love chocolate chip cookies. I enjoy eating healthy, but yep sometimes you just want the sweets.
I use to think of my body as self-healing. That was before my symptoms exacerbated, both for auto-immune type symptoms and neurological symptoms. I kept denying something was wrong, even after people kept telling me to see doctors. And then my chiro scolded me because she urged me to see Rheumy asap, but I put if off for weeks, thinking there's no way I have anything auto-immune since I use to be healthy, never getting a cold or flu. I've had mainly neurological symptoms for too many years, which I'm still mad about. . Even with my crooked finger that is getting worse and my wrists keep swelling and etc., I still tell myself it's probably nothing. I've been in pain for years that I just endured because I hate going to doctors that much.
But unlike me, you know what you have and can get the treatment for it. So I hope you do work with your Rheumy to find the medication that will work for you, so you can prevent further damage. You are going through a grief process, (denial, anger, bargaining, depression, acceptance ) as would anyone with a serious illness would. That is 100% normal, It's tough when you feel like your body has betrayed you . You're not foolish. You are human. Please be gentle with yourself!
It’s exactly how I feel - my body betrayed me exactly when I needed most, I need it to raise my kids… it’s so not fair, what did I do wrong so I deserved this, why the hell me?!?!? Although I know why - I took my health for granted and worked myself to the bone and I guess stress got the better of me… I couldn’t deny my first symptoms… they bound me to bed in matter of days, I couldn’t walk… they told me with this severity of progression probably a wheelchair is somewhere in the near future… but I run again, so no thank you for the wheelchair But medication unfortunately are a must, no matter if I like it or not. Still don’t know where I am in terms of acceptance though - somewhere in between anger and depression I think, denial was tested already - doesn’t work
I agree it’s not fair, and it’s gotta be tough to still have young kids and deal with it. You are giving your kids an invaluable lesson you didn’t plan on teaching them, how to continue on despite adversity. You can’t see it now, but in years to come, you’ll see how strong you are.
I thought like you, why me? But then the obvious answer is why not me? It’s human nature to think”bad” things only will happen to others. Then life gives us a swift kick and reminds us how it can change. I did use to appreciate my health, and I wonder how it came to this. And then I think of how it could’ve so much worse. So just focus on today. That’s all anyone can do. You still have full life ahead of you and things will get easier once your treatment is under control.
I don’t think I’ve ever totally accepted it but I don’t let it ruin my life. Every now and then I get down about it and what could have been (especially when I’ve had to miss out on something) but I remind myself this is how it is and make the most of it. Yes things are different to how I imagined my life but that’s not necessarily bad. Life is what you make of it. Have you thought of doing some kind of talking therapy or CBT, it may help.
Not there yet… most of the time I’m down… I’ll be starting soon CBT and counceling as one way or another i have to find a way to cope, but right now all I could say is - it sucks… hopefully I’ll have more to say in a few weeks!!
I found taking to a clinical psychologist helpful.I asked for a referral through the NHS as my GP kept offering antidepressants, when I knew I wasn't depressed. The appointment took a while to come through, but did come eventually. A few sessions with her, confirmed that I wasn't depressed and helped me think about RA in a different way. I guess it boosted my confidence to not only manage my disease but seek the appropriate care too.
Best wishes to you.
Thank you for that, it seems I’m on the right path! Same with me - every time I was offered antidepressants, what’s with that, I truly can’t understand!!!? I’m not depressed, we’ll, I was, but for a different reason, but not now, so hopefully counceling will help me. Thank you!
Hi, I empathise with tou .Tw and a half years ago had an emergency admission to hospital,extreme shortness of breath,was in resus for 5 hours.
I was diagnosed with NSIP lung
After this I was treated at Wythenshawe hospital..they were very open and told me that there as no treatment ,as m bloods weren’t right.
for my disease,
They also referred me to rheumatology
I’m was then diagnosed with aut immune disease -@autommmmun disease. RA, Lupus.Sjogrens etc.
I went to a L ing Well group to help me cope with the fact that my lng condition is not treatable. It was good,it was hard at times,well most of the time really.
I had trouble with acceptance,could not distinguish it from resignation.gradually I managed to accept things.
It’s still not easy,but I have to get on with things the best I can.
Presently it my shortness of breath is worsening,I have pan over my lungs.analgesia not really working.
Now life has thrown me another curve ball.
my Eyesight is worsening.
The optician referred me for cataract surgery.they rang me Saturday,had a cancellation,so that is a positive.my eye sight s wors dramatically.
M glad it’s been done soon.
It’s really hard,having to adapt to a new lifestyle and a new me.
Coming to terms with chronic illness and takes time.
I also did the nine Cognitive Behaviour Theraphy has blind.
It was very useful,,b was hard work.
I’m take my medication,bcase M frightened of what further damage RA. will do to my body.
Think of how I used to be,always busy,never stopped.
. Retired at 66 due to ill health.
It winds me u,but have to a
When I was first dagnosed,I was constantly looking n the internet,looking for information in the lung condition,there wasn’t much ,
I’m now accept that the answer to my illnesses are not on the net.
It’s hard when you feel you have lost control of your lif life.you are vulnerable.
If I go on the net,I only go on the NHS website,British. Ling. foundation or the other forums relevant to my health.
You need to take of yourself during this difficult time in your life.
So sorry to hear you are suffering such side effects. Maybe Mxt by injection would be better for you as this seems to lessen the side effects ?
Acceptance is tricky. It’s like grief, you are grieving for the life you had planned, so there is no right or wrong way to feel and no time frame.
As for methotrexate, I totally get it. I tried it for a few weeks and have never felt so rough. I told my rheumatologist never again and she has written in my medication notes that I can’t tolerate it. However, there are other medications which have very few or no side effects for me. Please go back to your rheumatologist and ask to try something different. Hopefully this will start to control your active disease and you will gain some of your old life back and then acceptance will also be slightly easier. There are many people who live a near normal life once they find the correct medication for them.
Hello there - I’m sorry you have had this problem with Mthx.I had similar with hydroxychloraquine, beginning of first lockdown I ended up in A&E having a CT scan as I was so ill, lost loads of weight etc. It’s taken about a year after realising it was actually that was making me sick and I have stopped taking it - now only on Mthx 10mg, which works quite well for me, apart from fluctuating liver tests.
Definitely go back to your Consultant and ask for a different drug, there are many out there, as your RA won’t go away any time soon without it sadly. My joints are worse with sweet things I’ve found, so now I do treat myself every now and then, but I try and steer clear of things I know will aggravate it.
And if you can’t vent on here, where can you, we all know what it’s like having to live day to day without knowing when you’re going to have your next flare 😢
Life is tough, believe me I know, I’m nearly 60, I’m getting divorced soon so will have to sell my home and move on, I have limited funds, a job I hate, son away at Uni, trying to manage the home and do all the things others can do easily, cleaning, shopping, even mowing the garden is something that is so difficult now as I now as I also have a tendon tear in my shoulder which is so painful, changing gears in the car kills me as it’s the same shoulder 😫
I have IBS from stress, anxiety, depression and which seems like a never ending stream of other minor illnesses and crap life has thrown at me. But before I go to bed I try and think of what I actually DO have, like the best supportive son I could ever wish for, great friends, my very lovely constant companion dog, a nice home (for the time being anyway) …….. life is hard, but we have to grit our teeth and go on.
Best of luck and I hope you get your RA under control with some different meds.
Keep us posted 😊❤️
Again, I feel like a spiked brat… I’m so sorry for everything you’re going through… I can’t imagine I’ll be able to the things you do on my own but that’s probably because I have support… I’ve got my new meds today and starting them tomorrow… both me and and my husband are terrified if the side effects will be bad again, but it is what it is. My son (9 years old) got so distressed of me vomiting and being sick and unable to do almost anything one morning he just climb in bed to me and cried his out asking me if I’m dying😰😰it broke my heart… kids are not supposed to see this happening to their parents… it took a lot of talking, lots of explanation, it took some time for him to understand that RA doesn’t care how old you are… but in the end he spend the day with me in the bed, playing monopoly and reading, but I’ll never forget how scared he was… thank god my daughter is too young to understand what is happening… Thank you for your support!
Sorry you are having such a rough time. I found MTX tablets seemed to go straight through me and gave me awful cramps. Switched to injections has helped. I have tried all sorts of diets and supplements to no avail. The MTX is not really working for my symptoms so I am hopefully lined up to try a biologic - not sure how I feel about that yet. Unfortunately I have had melanoma and also suffer from colitis and diverticular disease which just add to the problems. I too get comments like "you look so good, hard to believe you are unwell". Do they think it is all in my head? They don't see me on the days I can't walk, or hold a teacup as I stay home!!
Sorry to hear you feel so wretched.I'm the same as Wobbies, my acceptance comes and goes in waves.
It's difficult to get help/medication in a timely manner, which is not good and makes us feel we are fighting a constant battle.
I'm not sure where I would be without the lovely people on here, I don't post much but just knowing others understand how I feel and I'm not making it all up, is comforting and gives me strength.
I think you should have that cookie now and again, I do!
Hang in there, one day at a time.
Big hugs x
I know what you are feeling because that’s how l felt, l couldn’t accept it and l didn’t want to take any medication But l had too. I took methotrexate for three years and yes it wasn’t nice. But now I’m on Baricitinib and it’s so much better. I only take 1/2 every second day because l developed a syst on my breast. If you get on YouTube and look up Mikhaila Patterson it’s very encouraging and l have just started the diet and it’s making me feel really good.Sometimes you just have to find what is good for you and do your research,that’s the only way to get well.All the best.
Hallo I am Bas from Holland. Acceptence will help you for sure. I have severe RA, multiple times of surgery. My hands, feeth. And much more. This is my way how to deal with it. And of course that is not easy. And of course I have tough moments. But I count my blessings. I choose for Love my life more than I hate my painI hope you can do that too in the future! I am on sulfasalazine, prednisolon, plaquenil and every six month intravenous drips with Rituximab.
Excuses for my english!
Send you love from the Netherlands. And all the best. Try to find a way to enjoy the things you can do! ❤️
OMG, I’m so sorry to hear this…😥 I feel like ungrateful brat because I’m in much better condition (still… who knows when and what with this thing…) I still can’t font in me to love my life now, no way, my brain is saying, but I know it will have to happen… As for counting the blessings… even that is difficult for me, I’m so angry! Perhaps I’ll try to put them on paper - the good and the bad…. That will keep me busy and I’ll realise that my blessings much more than my anger and pain. Thank you for posting!!! The title of my list will be “Love your life more than you hate your pain!” Thank you for that, beautiful words… and your English is great 👌
I feel your pain 😥I’m struggling all the time to understand why my body would attack itself. Angry about side defects and being brought into medical world when I used to be so fit. Sorry if I’m not helping here … but just to say … you’re not alone x
Hey… you are helping! If not me yourself. As many people said this is the right place for us te vent out, to cry, to moan, to be angry… just let it all out and stop caring what people think of you, if they don’t like it - there is the door! I’m right there where you are. Life sucks and it’s unfair, but all those lovely people here are trying to help me to sort my self out. Stick around, you need it and we need you!!!
I feel soooooooo very envious of people who still have their health. And angry that I have RA and my husband has PPMS. I wonder if I did something wrong to make us both sick. I don't find people to be interested at all in what my new life is like and I miss my old life. I don't like missing out on all the fun. In Canada people were terrified of the Astrazenika vaccination and many people refused to take it. I had a hard time listening to my friends worry about the remote possibility of a clot when I am taking drugs that have major side effects. I guess we can feel blessed that there are some medications that will hopefully slow disease progression down but really these drug trials and the amount of patience needed is really hard. I feel your pain and thanks for your post. It made me reflect as to how I am actually feeling rather than how I think I should be feeling. I did not do well on methotrexate and lasted 3 weeks on it. I was sick on Christmas and in the hospital on Boxing Day. Then I was taken off. The new one I am on is a lot better and I am not nearly as sick. I think when we both find a medication that works for us we will be feeling a lot less angry and more thankful. Take Care.
Same here, extremely envious… and guilty… because it’s not their fault, nor mine… I was one of them and I’ve always took my health for granted. Lesson learnt… it’s the biggest treasure we have, but the only way to find out is if you loose it… can’t believe how ignorant I was… At least one positive thing came out of this - I’ve got empathy, understanding and compassion that you can have only if are on the unhealthy side… no matter of the condition… And yes, healthy people don’t care about us simply because they can’t understand it - you can walk, you look healthy, they even envy when you are skinny, but in a good way… they can’t wrap their head around what rheumatoid arthritis means, for them is just arthritis so get on with it…Same us - my husband has asthma and everyone was dead scared of the vaccine and same as you took a lot of effort to keep my mouth shut…
I’ve got my new meds today, for the life of me can’t remember the name and don’t want to get up to read the label so fingers crossed it will be better this time… I’m dreading them actually, but will start them probably tomorrow… spent all day with eye tests, X-rays, blood tests, rheumatologists.. don’t feel ready this evening…
In one of my post I mentioned that my husband got me a very nice punching bag, I can’t use my hands, but my legs/feet are completely my to control so I kicked the shit out of it and it felt so much better… no idea if that’s an option for you… I just need to get my anger out of me cos it’s eating me alive… so I’m thankful I’ve got my legs and can throw a pretty good kick. Take care too! Thank you for taking the time to post, as I’ve said countless times, the support I get here is better than whatever therapy we would need to adjust to our new life…
I think one of the things that helped with accepting I had a chronic disease was reading research that those who didn’t come to terms with their disease tended to have worse outcomes. Our minds are very powerful! So since I’m a stubborn sort of creature I thought “bugger that! I’d better get real and work out how to live with this.....”
It was what was needed to push me past my anger.
I do as much self-help as I can, but for me that is not enough. I need drugs too. And chocolate cookies!
So I hope you can find a balance of lifestyle and treatments that work for you. One of the hurdles for me was I have naturally low inflammation markers (possibly because I have such a good diet) so very easy for doctors to consider everything was going ok. Luckily I changed rheumatologists to one who went by what I said and about pain what the scans showed, not the blood tests. She put me straight on biologics...., it has made a huge difference. So don’t let MTX put you off all drugs.
We’ll, I’m starting to see that I’m in for the ride till the end… still can’t accept it and I don’t think I will, I don’t know how, it’s always has been all or nothing for me… I also have ADHD, so that doesn’t help, but I’m working on both… the fact I won’t accept it doesn’t mean I’ll ignore it, I have an appointment with a rheumatologist this Friday, face to face, to discuss what’s next and I’ll take what’s next. The thing is months ago, when I was eating very healthy my blood test show no signs of inflammation or anything, before even starting the MTX and of the rheumatologist told me “you don’t have RA, you have hyper mobile joins”. I couldn’t believe, I’ve asked him 3 times are you sure? He said, yes, I’m sure, what you have on your fingers is chilblains, because RA never affect the joint immediately under the nails- basically the first joint on the top of your finger. So I believed him, I left crying from happiness - I’ve always been very flexible, I used to do sport gymnastics in my youth, so nothing surprising for me. It turns out, of course, that he is wrong - next blood test and examination showed that I have RA. But you told me I don’t have it!!! Yeah, symptoms are very close, it’s easy to be misdiagnosed. So that’s that. I was back to the starting point. Lots of crying, lots of anger, went into depression, took me months to shook it off… i know that sooner or later I’ll find a way, the problem now is my husband… He is in denial and still firmly believes that food and exercise will “cure” me… He is extremely supportive in everything I do, we’ve been together since we were 16 and I know it must be hell for him to watch me going through this… so I’ll let him to understand whenever he is ready, on his terms. He is not happy that I’m taking the meds, but doesn’t interfere, only makes sure that I eat as healthy as possible and constantly pushing me to move around/exercise- gently of course. So I had to start accepting that twice. I don’t think he’ll fully understand the picture until some real damage this thing do to me… So far I don’t have one rheumatologist, but whoever is on duty so perhaps I’ll change that and demand for having one looking over my case. And I don’t think I have a choice, f***** healthy eating, exercise and drugs are the way. I’m sorry if I sound down, somehow today I feel down… but I don’t have a choice… Thank you for taking the time to post, I really appreciate it, there is no other place where I can say what I think and being judged, thank you!
I’m not very good with emotional support, a typical bloke in that respect, and I’ve ummed and ahhed about replying to this, as I don’t know if you’ll find it useful or not but…at an extraordinarily difficult point in my life, an incredibly wise person once passed me three very valuable pieces of advice regarding acceptance.
The first thing she explained to me was that acceptance is the difference between experiencing emotional pain and someone suffering. Pain is something that happens to us, often coming and going in varying degrees. It’s transient. Suffering is what we do with that pain, and when we don’t/won’t/can’t accept the things we have no power over, it becomes a state of being. At that point, we’re fighting against reality with no hope of winning, which is when pain becomes a constant presence rather than a transient feeling, impacting on every element of our lives.
The second thing she told me was not to get confused between accepting something, and approving of it. Just because we accept something that’s happened or is happening, that doesn’t mean we like it or we’re saying it’s ok. It’s not. What acceptance means is making a decision to experience the pain, but choose not to suffer because of it. By not accepting things we cannot change and have no control over, we stubbornly continue to fight the reality of life and what’s going on. Fighting reality causes suffering.
The last thing she taught me, is that accepting something is often not a one off event. For the big issues in our lives, the things that we’re really struggling with and cause us pain, acceptance is often something we have to do over and over. From personal experience, there have been events and situations in my life that initially had to be repeatedly accepted on a minute by minute basis. Over time, the acceptance begins to last for longer periods, but I know there are things in my life that I still have to periodically re-accept decades down the line. Sometimes I’ll have been fine for months, occasionally years, and then something happens to reboot the emotions and it catches me out of nowhere, that reignited sense of injustice and unfairness, that anger, the wondering why. I used to beat myself up about it, use it as another emotional stick to beat myself with: you shouldn’t feel like this, you should be over it, there are people worse off than you. FFS, man. Grow up. Get a grip. Then at a particularly dark point in my life, I had an epiphany. I finally realised that it’s not just about accepting the situation, the thing causing us pain, it’s also about accepting our emotions about what’s going on. You feel angry? You’re allowed to be angry. Sad? Hurt? Let down? Whatever it is you feel about the thing causing you pain is entirely valid, and accepting that, acknowledging and sitting with that feeling, and that it’s ok to feel that way, is almost as important as accepting what’s happening.
I developed my first chronic health problem in my early 20s. Approaching 40, I’ve now got a list of them. My body is not my own. It doesn’t work, rarely ever obeys what I want from it reliably, always hurts. I am allowed to be disappointed about that. Angry. Sad. But I have a choice. I can feel those emotions, accept that’s how I feel but that there’s nothing I can do about the situation, or I can fight the reality and suffer emotionally as well as physically as a result.
Like I said, I don’t know if this will help you or not, but these were all things I needed someone to point out to me at a time when I was struggling. It’s completely ok to hurt, but you don’t need to make yourself suffer.
Your first paragraph made me laugh in a good way, thank you for that!Yeap, first advise is spot on - I simply don want to accept the reality or doesn’t know how to, incredibly well said!
Now the second part is difficult… choosing not to suffer because of the pain because I can’t pick up my daughter clashes with every emotion I have as a mother… I don’t know if I’ll be able to do that, but I’m good at ignoring pain, will definitely explore further!
The last advise- totally true, but still learning… after a good day somehow my stupid brain thinks “that’s it, you’ve got this!”. Then the next day back to beginning… there’s certainly a learning curve here and I better get better learner faster!!!
I can’t imagine what this would do to me if I was diagnosed in my 20… you have my utmost respect! Thank you for taking the time to share this with me, it helps, I’m building the foundations of my new me and perhaps will have to redefine some words like “pain”, “choosing”, acceptance”… I don’t know how to separate suffering from pain, but that goes in my notes and in my foundations. Again, thank you, you are actually pretty good at offering emotional support and the wisdom you have being in the dark side of the hollow coaster called life.
It’s not easy, none of it is. It’s also a process, a journey we go on, with repeated bumps and false starts along the way. Occasional u-turns and ridiculous detours that feel like they might never end. It’s human nature to have expectations and wants, beliefs about how things ‘should’ be, to get carried away thinking about tomorrow, next week, next month. That we’ve got this, we know it now. Perfectly normal. Therefore, it’s also perfectly normal to be upset and in pain when something difficult comes along and alters the path we think we’re taking. Or when we realise we’re not doing as well as we thought. We haven’t quite got it. Or maybe we haven’t quite got it ‘right’.
I can empathise a little bit regarding your daughter. I’ve been a single dad for the last 7 years to a now 13 yo with complex needs. My first major health problem (other than my arthritis) left me practically immobile when she was about a year old. It was also an extremely painful condition, and one that was completely dismissed by the medics for 18 months. They told me it was all in my head: it was, but where they meant mental health, I actually needed brain surgery. Twice. Go figure. Anyway. It’s completely understandable, justified even, to be devastated about not being able to be the mother to her you want to be right now, in the same way that I’ve previously felt like a failure as a dad for at times not being able to do the things with my daughter that other dads do with theirs. That pain makes total sense. But the question you have to ask yourself is ‘can I change the situation right now, in this very moment?’. If the answer to that is no, then the only thing you can do is change your response to the situation, right now, in this moment. Easy, right? Hell no. It’s not fair. I shouldn’t have to. This shouldn’t be happening.
It is happening. Right now, for whatever reason, this is the situation you’re in. Judging it as good or bad, wondering why it’s happening or when it’s going to end, won’t change the fact that it is exactly what it is. Accepting the situation doesn’t make it ok, doesn’t make it better, but - as long as it’s accurate - accepting that there is nothing you can do about it definitely won’t make it any worse. It’s not rolling over and giving up, it’s bravely standing up to something painful and embracing it for exactly what it is. No more, no less. If I show you a blue chair, you can judge it as an unpleasant colour, and wish you could change it, but in that precise moment, the fact is simply that the chair is blue. It may potentially be in your power to change it in the moments that follow, but at the exact point I show it to you, what can you do about it? As much as we may want to, we can’t change what already is and exists, be that a hideous chair, or chronic pain or illness. Relationship breakdowns. Bereavements.
I’ve also found that ignoring the pain that comes with the reality of a situation is decidedly not helpful: you can’t fix a broken leg if you pretend it’s not hurting. You might be able to avoid it for a bit, but eventually it will take you down. Emotional pain is the same. You can deny the situation is the way it is, try and avoid and deny the pain it’s causing you, but only for so long before it comes back. Problem is, if we try and ignore it, instead of being in a cast for 6 weeks, we might wind up in traction for 4 months, maybe even with a permanent limp. As much as feeling the pain hurts - and from personal experience, it can be absolutely excruciating - if we can acknowledge and accept it for what it is, without judging it, that pain will eventually pass. Keep hobbling about on a broken leg, though, keep resisting the very fact that it’s broken, and the situation will only hurt more and get worse. The word surrender tends to have somewhat negative connotations, it’s associated with giving up or giving in, but it’s actually the opposite to resisting. Resistance can be far more harmful than making a choice to surrender, to accept that this is the situation in this moment, and I need to deal with it as it is, not as I want/wish/pray it would be.
I swear I’m not trying to preach at you, (and definitely not mansplaining or anything of that ilk, just in case 🙈), I can just really identify with where you are and how hard it can be. There are a lot of good resources on acceptance out there, including a dude called Eckhart Tolle who has written some pretty famous books on acceptance and surrender if you’re open to reading. His best known book is called The Power of Now. I read it on the advice of the aforementioned wise woman, and it was a big help. There are also a lot of blog posts out there, and I think this one is pretty good:
You will get through this.
Honestly, I cried, I laughed… I got very angry… because you are absolutely right and there’s nothing I can do about it. Don’t know if anyone told you, but you sound like Morpheus from the Matrix Guess I’m going down the rabbit hole… Thank you sincerely for taking the time to post… I didn’t like what you said, of course, but you are absolutely right… There’s lots of wisdom and pain behind your words… and the doctors… can’t believe they told you it’s in your head, honestly, and then 2 surgeries, this is just insane?!?!? Sometime I got the feeling they treat us a cattle, I know that most of them really mean we’ll and trying to help, but here and there are some individuals who simply shouldn’t be doctors….Just a quick example, although they are not a doctors, but clinitians, I mean TalkingSpase, a week ago I think, in a moment of desperation as advised by my GP I gave them a call… after the usual questions I’ve explained my issues and concerns and that I’d like somehow to get second opinion on my ADHD diagnosis cos the meds they give you are no joke, so I just wanted reassurance or something, big mistake. “Why are you looking for the stigma of a diagnosis?” I’ve asked since when whatever diagnosis you have it’s a stigma and the next questions are “Do you want to go in to mental hospital?” I said no, “Do you want to loose your kids? Obviously you don’t know how the mental health system works…” so I’ve finished the conversation politely and in a complete shock?!?!? What the hell? She surely must be aware that people who’s calling are somehow unstable, I couldn’t believe how she talked to me… I cried for hours after this… anyway, I logged an official complaint and already had them apologised like 10 times but that’s not what I want - I want to make sure that she would never talk to people that way ever again, so she is going through training again…
I got totally out of the topic here, sorry, had to say it as I am not allowed to post my review officially because it contains “serious accusations”… Aaaaaanyway, I’m lucky enough to have a very supportive husband and before I managed to successfully carry out my last pregnancy to have my daughter I had 5 miscarriages… I’ve waited for her for so long and I couldn’t even pick her up or hold her as I was scared to death that my hands would gave in and I’ll drop her😥so I’m sure that adds up to my issues with acceptance… and when she wakes up scared sometimes in the evening she’s screaming for her daddy, if I try to comfort her she gets even more 😭 I know that she wants daddy because he was taking care of her most of the time and I know this is fine, but this is just killing me… I have an unbreakable bond with my son and trying to do the same with my daughter, not an easy thing if you are always in bed, not giving her a bath, dressing her up… it’s just so f****** unfair😭😭😭😭 But I’ll find a way.
Totally agree that pain shouldn’t be ignored, it’s just how I’ve been raised - if you are not dying right now than you’re fine… I’m learning… And you are not preaching or mansplaining I am extremely grateful for taking the time not just to tel me to face what’s happening, but taking the time to be sure that I really understand that the blue chair is the blue chair…. And I’ll have to work with the blue chair…
I’ve seen my rheumatologist today, blood tests, X-ray, all the VIP treatment and of course new prescription… which I’ll start probably tomorrow, I still feel horrified from the last experience, but as I don’t have any other paint then blue I’ll just have to bite the bullet and hope this time I’ll last more than 3 weeks…
I’ve already ordered The Power of Now and from tomorrow, well, probably from Monday cos kids are home during the weekend I’ll start to educate my self on acceptance…
Meanwhile, my husband both me a punching bag, which I can’t really punch, but I kicked the hell out of it and it felt good… don’t know if positive or not but that anger is building and building and… for now the punch bag will take it until I manage to find a piece…
Thank you all!!! Amazing people, all of you!!!
Apologies, I got carried away… I think that’s the longest post I’ve ever posted…
OMG! Reading other people posts made me feel so ungrateful!!! I’m so sorry… I’m practically RA free comparing to what I read😥 I hope I did not offend anyone with my obvious ungratefulness…
Well hey there well I can really understand where you are coming from I have sero negative inflammatory arthritis which means the arthritis doesn't show in blood work however the team found it on an ultra sound scan of my hands. I fought for three years for a diagnosis, well I have pain in my hands every day and am on Sulfasalazine since February this year. I have to think of a one day at a time. I was really fit before this took hold and I don't think I've totally accepted it and I have found that everyone on here is lovely as they all understand what life is like living with this. A lot of folk tend to think it is the same as Oesteoarthritis hmmmmm well only we know yeah e.g. the extreme fatigue I regularly encounter yeah anyway hope you find the correct treatment take careX
Hi guys, hope you are all doing well! I’m on leflunoid from today and I’m dreading the side effects… so far only headache and very strong urge to throw up but managing it… any advice, what should I expect?
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