The fear factor.

Put the pain, inflammation and fatigue to one side for a minute because I've realised that what is suddenly overwhelming me, as a result of me being ill for the last 9 weeks and not being able to work at all, is the fear factor.

I am usually such confident, social person but since I've had this RA, I'm scared to do anything. I'm scared to commit to doing anything with friends. I'm scared to drive more than half an hour. I'm scared to eventually go back to work in case I can't get through the day. I'm scared to go out for dinner in case I eat the wrong thing and it causes a flare-up or I overdo it and then have to stay in bed the next day. I'm literally scared to do anything except stay in the house and look after myself.

No one can prepare you for how mentally this illness affects you.

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  • I can completely relate to that!

  • Only 1 thing left then

  • You're not helping yourself allowing yourself to feel so negatively Jules. I know you're newly diagnosed & not yet controlled but you won't always be like this, it's a bad time now but things will get easier. Tough love now... try to turn your fear into determination, you will get a hold of this disease, you will get to a point where you can work again albeit in stages until you feel able, you will still go out with friends, you will find out by trial & error what causes inflammation & you will be able to go out to dinner & comfortably order what you are able to tolerate. Maybe all of this will be in a different way to before you first had symptoms but it can be done. Ok none of this will happen overnight but don't let the disease define you, it lives with you, you live with it, you're not ruled by it. You'll get your confidence back, honest, in dribs & drabs even though it seems impossible just now. For the moment say to your friends do you mind if I commit nearer to the time, I do this if I'm having an iffy time & nobody bothers they just know I'll attend if I can & on the rare occasion I can't they don't make a fuss about it, good friends don't. You'll learn how much you can or can't do & hey, does it really matter if you do let down your hair once in a while, a day doing absolutely zero doesn't harm.

    Is there a support group near to where you live Jules, either NRAS or hospital run? Have a check here nras.org.uk/groups. They can be great places to socialise with others who get how it is & will happily share how they cope, you can swap ideas too. Beverley regularly gives the meetings/dates & who the guest speaker is, have a look out for one near you. x

  • Great reply and I echo everything you said. In my early days I couldn’t go out or socialize or even lift a sheet. Now I’m 90% back to where I was and I am grateful every day for the meds which got me here.

  • That gives me hope. Thank you. X

  • That's great Aloquifiqie! Most of us can, the forum isn't representative is it? Whilst some of us choose to help others & are here longer term others are transient because they're now getting on with their lives.

  • Gosh I need you on my shoulder every hour of every day. What a great pep talk. Thank you so much 'no more heels'. I honestly feel more positive just reading that. Bless you x

  • Hi Jules, I know it's good to have somebody like nomoreheels by your side and I am glad you are feeling better already. Print off her post and stick it on your walls all over the place. Then you won't forget that YOU CAN, and YOU WILL! All the best.

  • So true nmh!

  • Very eloquently put Jules 13. I can relate to your post too. I think lots of folks will have felt the same or are feeling the same at this moment in time.

    The shock of the diagnosis and harsh treatments, side effects and outcomes is very frightening. It is normal to feel scared but we don't want those feelings to overwhelm us because then it's RD that wins. I had to say to myself that it was ok for me to admit to being scared.

    We all cope differently but it is good we can read about other folks fears and worries on this site and compare notes as there are lots of people who have been in or are in the same boat!

    One thing I have learnt is that I have to be realistic and honest with myself about what I can and can't do and not to beat myself up about what I can't do. Not easy!

    Can you talk to your GP? Or have you thought of phoning the NRAS helpline? It might help to chat it through one to one.?

    BG

  • I've done both. My poor GP gets all my tears. Because I feel safe letting go with her I end up just bawling for the whole 15 minutes. And yes, NRAS helpline have been so great too. And you lot. You guys are pulling me through. Much love and appreciation. X

  • Bawling is good. Better out than in!

    Glad you were brave enough to post your thoughts and feelings. I think you have helped lots of other folks on this site including me.

    BG

  • .

    Maybe "anticipatory anxiety" 😨 , Jules13? πŸ€”

    Have a look-see at 'Fear' ( healthunlocked.com/nras/pos... ).

    Maybe some of it will strike a chord 🎹 🎢 ? πŸ€”

    .

    🌚 πŸ‘» πŸŽƒ ☠️ 🍬 🍁 πŸ•Έ πŸ•· πŸ€ 🀑 . . .

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Ohhhhh I've missed you emoji girl. Yes it is anticipated anxiety. You are spot on. X

  • .

    Look it in the πŸ‘ .

    Kick it in the 🌰🌰 .

    Then . . πŸƒβ€β™€οΈ . πŸƒβ€β™€οΈ away as fast as you πŸ›’, dπŸ‘‚.

    😌 πŸ™ 😬

    .

  • You do make me laugh.

  • πŸ˜‚ 🀣 πŸ™ƒ . . . πŸ‘πŸ‘

  • Hi,

    It is awful isn't it? But you will find a way to live- and enjoy life with this stupid disease. I am not back to the way I was- my life is utterly and I think permanently changed but I have found a way to be happy with it- without putting my life on hold ( or wasting money) looking for a 'miracle'. ( Not that I wouldn't like one lol). Part of my new-ish balance is to be v careful with some things and some days- and then think 'f#@%k it and over do fabulously on others. Feel the fear and do it anyway? Just with a recovery plan... I can't cut my own food or walkmuch but

  • Like you I doubt I'll ever be back to the way I was either - my life is so drastically changed too in so many aspects. I have been swollen and in constant pain for almost two years now - my wedding ring sits just past my fingernail now and it's doubtful I will ever wear it again. I have toe supports feet splints and ankle braces and walk with a wee wheelie - which at first I cried about but now wouldn't be without! I've failed 2 DMARDS but kept Methotrexate and my breakfast is a concoction of pills too!

    Some days are worse than others but slowly I'm trying to rebuild things - it's been a big mind shift for the whole family as I was always the stronger one. I care for my husband who has disabilities so you can imagine our family dynamic is totally skewed just now - but we are getting there! It won't ever be the same, I fear, it'll be different but I think it'll be ok!

    I can't really wash, dress or do many things without some help, my hands, wrists, ankles, feet and toes are all effected but I'm still me and I'm slowly finding ways to manage things and come to terms with the here and now.

    - I haven't quite found a way to be happy with it yet, like yourself but I'm still working on it!

    Probably my longest ever post here! M x

  • Keep at it Marie66! I'm fine but sometimes things just trigger me almost. Just thinking about what I used to be like can make me howl like a baby! I still dream of running and walking long distances... Maybe getting in the bath myself and not ever having to be fed?! But I used to feel desperate a lot, and now it only hits me every now and again. You will find your balance. Some people get almost totally better, others have to find a way to enjoy life anyway. I used to fell run but now I usually genuinely feel happy if I can enjoy a potter. And I have a mobility scooter which makes me ridiculously happy as long as I don't picture myself as I used to be !x Good luck xx

  • Sorry- stupid fingers... But I'm hoping to do an adapted three day horse ride - and if I can a parachute jump. With lots oof help! Good luck. Things will improve x

  • Blimey. That's amazing. X

  • Ps, have you thought of asking your doc to refer you for CBT? It can work wonders!

  • Yes I think I should. Thank you. X

  • Hi LizzieR what is CBT please?

  • Hi,c

    Cognitive Behaviour Therapy. It's worked wonders for me mentally! X

  • Jules13 I can completely relate to what you are going through - I feel just the same. Fear is totally exhausting and overwhelming. You get to the point where you think you’ve exhausted the fears but then it seems you start to fear fear itself and worry about doing anything and everything 😞 I found the darkness and quietness of a sleepless night the worst for this. The unconscious mind throws up everything and it’s really hard to shut out that inner dialogue. I’ve battled against it as I suffer from anxiety and depression also. I seriously felt so alone. It’s a hard battle. CBT helped a bit along with counselling but if you’re like me you may find you need some help with β€˜calming’ your own thoughts. I have found Mirtazapine a great help with this. Take care & feel free to message me if I can help further. I found this article interesting and you may do too: fractalenlightenment.com/28...

    x

  • I think CBT will definitely help. I meditate too which helps. X

  • You took the words right out of my mouth. Having an illness that no one understands, even the medical profession, is bloody scary. My advice to you is to take it one day at a time. We are all different and we all adjust to this RA at our own pace.

  • If I'm honest it's made me into a raging hypochondriac. I got up from the chair too quickly today and I do have push a little with my arms to do so. Started to get pain in my left shoulder then my left arm and got scared that it was my heart ! So mentally exhausting !

  • To be honest, it's made me into a fool. I stand at my till at work and stare at my hands.... I ask myself, " Are the swollen bits less swollen today?"

  • Does your boss know you waste time like this?

    Remember you are through the worst missy!

  • Oh god. No I don't want to start being jumpy with everything I do. That's terrible.

  • Hi, I was being slightly tongue in cheek but it has made me a little nervous as my body has just been weird. I get allergic reactions at the drop of a hat and travelling aches and pains such as my arm yesterday which has now completely gone. : )

  • I feel you so much on this one. All I can say is it doesn't help to protect yourself at the expense of living. That's hard to manage though.

    Remember there's no harm in having to cancel. It's better to try and realise it's not a good time than to never try.

    It's something I'm having to learn too. :)

  • There is harm in cancelling. Your friends start labelling you as flaky and your clients start looking elsewhere.

  • What part of the country are you in Jules13?

  • Somerset. Near Frome and Bath.

  • Clients maybe, but your friends should understand if they know you have issues x

    You need to test you limits a little bit. You don't have to go all in at once, but just test the waters now and again and see how it goes.

    I'm super freaked out about starting to work, so I'm testing my limits with a bit of volunteering once a week and going to the cinema or shopping now and again with bf.

    Occasionally when I'm feeling on the fence about if I can do something I'll give it a go and see. Sometimes it ends badly, but sometimes it's a success and a self esteem boost. I just make sure it's when I have some time to recover if I need to and with somebody understanding or something that isn't a big deal.

  • My friends are the ones I find hardest to explain to. I wrote several posts about people not understanding this illness. My friends think it's temporary like flu. They text me... are you better yet? Like I'm going to wake up and it be sorted. I've tried to explain. I've written a blog about it, yet it still doesn't register.

  • How about downloading this a few times Jules & handing them to your friends or indeed anyone you're finding it difficult to explain how you feel/why you're feeling as you are nras.org.uk/publications/ne...

    Actually, have a look through all the publications NRAS provide, some may be helpful to you. Some are available in hard copy but some only available by downloading nras.org.uk/publications/all

  • You don't need flakey friends Jules, & clients will understand if you tell the truth.,,,but now you are on the way to being more controlled you will be able to pace yourself & your work will pick up.

  • I do agree with you. But, you have to not let fear define you and change the person you are. I was diagnosed this past June, and after losing my sister a year ago, fear became even more real. Because she had an auto immune disease as well. But, I am working hard on trying to just accept this and figure out what will make me feel better. Started taking CBD oil and I believe it has helped make me less anxious. I am still working, because if I stay home I get more stiff. Trying to stay ahead while I force myself to get some energy to complete the day. When I am around other people, (I work in a hospital) I try to forget about me while I'm helping them and somehow it makes me get through my day.

    Try to let go of the fear and surround yourself with what makes you feel good😊. Prayers for strength!!

  • Lovely response. Thank you. X

  • Thing is if you continue to be scared to go out you will end up losing friends and help.If you need an arm to hang onto it's cool nowadays to link arms with a friend instead of getting stares.I can only get out this way with my sisters or husband but I am OUT and feel more alive.It will improve your confidence too.Don't push people away.Just gradually do things and stop if you feel bad...don't over do it.

    With right meds you can feel stronger

  • Thanks so much. X

  • I'm with you I've been off work since June with Lupus & several kidney infections etc so have had to cancel so many social events and the thought of returning to work is daunting, however I am totally with Fra22-57 on this one. You need to get yourself out, slowly and not allow your illnesses to take over. Good luck xxx

  • I will try.

  • I think it is quite normal to have a grieving process in the beginning Jules and so my advice is be kind to yourself . Take it slow & you will get there . Start going & doing things when you are up to it . I never do social things back to back - alternate if so I regret it . If going out in the evening - I will rest on the bed for a couple of hours beforehand. It is doable ( is that a word ?) . I generally find I forget about it all when out socially .in the beginning there prob be a payback but it beats staying at home as that is not a life . As you improve it will all start making sense .

    Ps . This is from the girl who was in Oxford St London at weekend - suddenly overcome with fatigue and thought - where can I lie down ? Think there should be something like that for chronic disease . If u see someone lying on a park bench - that's me !πŸ˜‚

  • You should have gone to the bed department in John Lewis. Pretended to buy a mattress. Haha. Yes you're right. Pace myself.

    I'm going to a friend's 50th birthday. Was supposed to stay in the party house but realised that was a stupid idea so booked myself into a b&b. Means I can leave when I feel shattered. Sensible.

    I've also got two aged parents and having to take care of them. My dad has hip surgery today, my mum has depression and anxiety and I'm the one trying to hold it all together. Arghhhhhhh. Not great timing that's for sure. X

  • Hilarious- i mean the J lewis bed scenario .

    Tempted to get the Tube badge ( so you can use the elderly seat !)Not old but hanging on to the rail with my damaged hands is not good .

    Guess I am too chicken & afraid of confrontation.

    You do need to prioritise yourself Jules or you will be no good to man nor beast .

    Guilt & worry achieves nothing.

    I try my hardest not to worry & do the best I can .Not easy to pull off but you cannot afford not to . Anxiety def makes me iller .

    Take each day as it comes . 😁

  • I can relate to this not able to hold onto the rail x

  • The rail is not as bad as the overhead hand grip thing. Awful.

  • I was such a mess yesterday. Took my father to the hospital and was trying to cope with my depressed mother. Everything seemed to flare because I was so stressed and upset. I had the worst migraine ever and spent the rest of the day in bed. Stress is definitely the monster here.

  • Hope your Dad's op goes well Jules and hope the party does too. Good idea to have a place nearby to escape to! x

  • LOL I'm thinking of us taking inflatable beds around with us! It is a problem when you need to sit and there aren't always places or you go in a cafe and there's only the high bar stools you haven't a chance of getting up and onto! I agree totally about a grieving process. I saw a psychiatrist early on in my RA at my rheumy's recommendation as I could not cope with what was happening as my social life revolved around fell walking and athletics and sports. This person told me that I was grieving and would grieve for the person I was. Things changed in a strange way though and you find other things you want go do and life takes a different course and not for the worse! x

  • I think grieving is a really good way to describe it. Thank you x

  • Someone also mentioned that above too I just saw, and it is very true but you do get to a stage where you think .. I'm ready to get on with life now so what else can I do? So that is what I did. Fulfilled a dream . I was lucky my partner supported me to study and supports me in general but you will find other things you can do and love. x

  • I went through a grieving process when I had my thigh and knee replacement. It meant I would never play tennis or ski or even swim breaststroke. Nothing that twists my knee. I was so athletic and sporty and I was reduced to nothing. I can't even kneel on it to get on the floor to do yoga. It has made the pain better and fixed my leg but I have lost so much. I think I grieved for my lost function for a year.

    Now I can't use my hands to push me up out of a seat. If I fall over I can't actually get up because I can't use my hands or my left knee to kneel on. It's terrifying. But yes. Grief it definitely is. I definitely need to see someone about it but again it comes down to money. I had to stop my pilates rehab because it was Β£40 a time. My therapist is Β£60 an hour. Considering I haven't worked in 7 weeks, all my money is going on food and petrol right now. Nothing spare.

  • Hiya! 15 years ago I lost a baby quite late in pregnancy had a blood transfusion and in intensive care for a few days. I was always fearless before this but became very fearful to the point of panic attacks. It was the same in the beginning with all this but 3 years in,I'm closer to some sort of normality and hoping that it will improve every month. Key is findin the right medication that works for you and being able to give it time.I had a turning point at the beginning of this year,having been in so much pain and not being able to get on top of it shifted me into a totally different space,seriously would have sometimes welcomed death..If this disease has done anything positive it has managed to take away my fear! Put all your energy into finding the best doc and the best treatment and go out when u can. Plan to do fun things...the mind is stronger than u think! Take care and hang in there.

    Anya X

  • Thanks anya. You're right of course. I'm so sad for what happened to you. And I've been there with the panic attacks too. They are so scary. Will try and keep positive. Thank you xx

  • Hugs. x

  • That's it exactly!! I do force myself to get up and get going, especially to work, but once I'm home, I'm always making excuses to not go out again!

  • Balance. I hear you.

  • Jules, others have already expressed very eloquently all I'd want to say to you about anticipatory fear but do download the NRAS book on Emotions, Relationships and Sexuality. It talks about loads of stuff that could be relevant to you now or in the future. Good for the middle of the night if none of us reply! Take care and meanwhile remind yourself that you are unlikely to feel this anxious all the time, in time. Sounds like you have a few non-RA related problems in life too which gets the old cytokines going!

  • Yes. Many many other stressful things going on in my life which doesn't help the RA that's for sure. I need to focus and keep things in perspective. Thank you. X

  • I know exactly how you feel Jules, you took the words right out of my mouth. No one knows, and if one more person tells me 'but ra is just pain in the joints' I will scream, in fact the pain is the easiest thing to deal with as far as I'm concerned. I was a counsellor up until a year ago, when I had to give up work because of my ra, and I'm trying to convince my rheumatologist that we need specialist psychological help to deal with this disease, not just more and more meds! After all, our brain can have devastating effects on our body and the way we feel, try and find someone to talk to, face to face, healthy mind, healthier body! All the best, Chris

  • I agree. Pain is physical and I can get my head around that. It's all the other stuff that goes with it. You are spot on. Mentally, this illness is worse than any pain I've had. I'm going to meditate now and try and get my head in a good place before I face my mother and visit my father in hospital. I've just learnt that my house sale has been delayed too which is more stress. Ommmm.

  • Know what you mean jules, but I reckon we all felt like that when we were first going through what you are experiencing now.

    I am a complete control freak, & the thought if being late anywhere freaked me out, so either I got ready far too early or just cancelled.

    But that passes,& now I have been out to a restaurant where friends had to cut up my food & we all laughed over it.

    Time will put things in perspective & stressing over it won't help...so buy in a big M&S Lasagne or whatever you can eat safely, invite your friends over & pick up where you left off before RA entered your life.

    It truly isn't the end ...I know it feels like it at 3am when you can't turn over in bed...but it will get better if you let it!

    Good Luck, you'll get there!

    AC

  • That's a great idea. A big ready meal and a few friends. That will have to wait until I get my house but I like your way of thinking. Xxxx

  • The way I see it...if you are the host...you don't have to drive home!

    But remember to budget for a dish washer when you move!

  • Just giggling to myself about your friends cutting up food for you Kathy, I've been there & the next time one brought a bib for me! I now take my Good Grips knife with me whenever we eat out, another friend kindly made a cover for it for me. It saves other people's dinners going cold!

  • Giggle away nmh!

    Thank goodness after 18 months on RTX I can now eat in a restaurant without embarrassing anybody! I can even open some screw top jars without using any of the gadgets I have collected over the years.

    Much more importantly (!) i can paint my own fingernails now !

  • Isn't that so satisfying, when you can paint your own nails?! I've not been able to do mine for a good few weeks, not back to French manicuring just yet but solid pale colours hide a multitude. My hand weakness is caused by OA but thanks to exercises given by OT my right hand at least is getting stronger, I can really feel the difference. My left will be a bit behind because that's the one most affected by CT at the mo but yesterday my Rheumy was most impressed how much better my grip was, actually I felt quite proud with her praise at how I've improved though I know I shouldn't!

    Well done on your progress, screw top jars are the Devils invention! It must feel great to have your gadgets now redundant.

  • I fully agree with you, and it's happening to me, "The Fear Factor". At least we are aware of this and somehow can try and fight "The fear". I once went on a pain management course, it was brilliant and apart from meeting others in pain they also taught us how not to be afraid of ourselves and the pain, it was a brilliant course, if your local hospital does these management courses, I would like to go again, but I've moved down to Bexhill on sea and I don't know if they do these courses in this area.... But yes,, "Fear" is a very major issue,,,,,.

  • My pain management team offered me that after I had my knee and thigh replacement. I said I would like to attend and they then said the waiting list was 8 months!!! Very helpful. Not.

  • Hi Jules

    Really related to your post and diagnosed not long b4 you i think, august this year. It is a serious disease with serious meds that make you feel even worse; had a bit of a melt down myself last week due to side effects. A lot of the trouble is poor publicity about what it does to people i think. I keep diary by bed to have a rant in, and sometimes good stuff that's helped. I do notice v low mood for couple of days after methotrexate is a pattern, have to keep on "you are not your thoughts" mode those days lol! Yeah meditate too, couple of people said time to grieve too. I too was confident, outgoing and am off work at mo. No real advice for you, loads have said gets better with time, just wanted to say yes it is shit and you're not alone. All the best and hope things improve with time.

  • I think a lot of people relate to this... the mental effects vs the physical. I always thought I was so positive and the trouble is, when I've been ill before, you know eventually it will get better. This illness you have no idea. It's so unpredictable. I keep thinking... well what if I book a few weeks away next year. Something to look forward to. But what happens if I get ill when I'm in the middle of nowhere in India? Who can help me then? I was sooooo adventurous, spontaneous and a free spirit. Now I have soooo many drugs and paraphernalia that I can't just drop everything and take off. It's making me a complete hermit.

  • Maybe it will be a lot better by then or more under control, most people on here seem to have tried a few mixes of meds before they get it right, so heres hoping you do. I'm sorry you feel isolated, i've kep to house for a few weeks now because so tired but dont think it's v good for you, sometimes push thru it anyway to do stuff like country walk n always feel better mentally even if you need sleep after. Know what you mean about work, people ask if you feel better and it's like no because it isnt curable πŸ˜€ it is v early days yet i think, don't beat yourself up - perfectly rational to feel like crap after diagnosis.

  • You will get your confidence back when you can move and do things without the horrible restrictive pain. I think most of us have felt like that .. Scared to go out. It's hard for you as you're not living with a partner etc who can support you with your problems.

  • I've got no one. My parents who are usually rocks, are elderly and need help from me. My sister is a joke. Never lifts a finger to help anyone. I literally had to beg her to come over and be with my mother while my father was in hospital. She actually implied that because I was off sick anyway, then I was already here to look after them. She cannot comprehend how rubbish I feel. So that's what I can't handle. Not having any support. My London friends would be rallying around if I was there but I'm newly in Somerset and haven't got my close friend group yet. Boo. X

  • I appreciate the difficulty as my brother distanced himself from me many years ago when he went to live with his partner in the Channel Islands. When my Mum got older but still very fit and very sound of mind and independent he rarely came to see her the last 10 years of her life. He rarely asked how I was knowing my RA issues and was happy to let me and my husband have all the contact with my Mum. We loved her so no problem. It got so much worse with his absence when my Mum had a sudden onset of Alzheimer's. He came once in 4 years and didn't even come or speak to me when she was in her short decline of a month or so in early 2015. I was flaring badly and struggling to walk. Let his wife do the contact. He never came to say goodbye to her. Only just managed to come to the funeral. Treated his week here as a holiday tbh. He has spoken to me twice in the last 2 & 1/2 years so I fully understand the strange and uncaring sibling situation and expecting you to care for your parents. He was so different many years ago re our Dad. My Mum was in a residential for the last 3 & 1/2 years and was lovely and intelligent and agile and no other problems but still he could not come over. As long as he can live with that. He once told me it was laughable that I was rushing around doing things when I had RA and he was sat doing nothing! I told him yes it was Fing hilarious. πŸ˜–. I don't keep in touch other than a brief birthday email as he has no interest in me and also as his wife became horrible as she was executor along with my brother who did nothing except sign a paper and agree with me at one time that his wife was out of order on something. So Jiules I know how it is to be taken advantage of and I was patient and tolerant but SIL antics got so bad I told her she was out of line. Do stand your ground and tell your sister you can't do everything and especially at the moment. I loved my Mum so much as she was a great friend too and I did not mind at all doing anything for her .. Anything at all, but my brother's behaviour was very disappointing. Until people like that experience major troubles with health restrictions they have little interest in the things affecting you. Many people have turned away from me and seem to be embarrassed I have RA. I can't change that so goodbye fickle people. I don't wish to pry but could you move back to London or is this new start in the country something you need to do? My husband helped so much and topped me from going crazy on all this. x

  • I've liked this Julie but only in support. I knew of your sister in law's awful behaviour but no idea your brother was so distant & so lacking in compassion to not only yourself but your mum too. I trust he lives to regret it & you can reconcile at some time. Hugs. x

  • Thank you NMH 😘 I identified with Jules' situation re her parents and can see similarities in an unsupportive sibling and being left to do so much when you can hardly get of the house yourself. I think many of us have gone through this too. 😩You toughen up and it's hard, but my brother seems to have disowned me and it's nothing I have done! SIL will have poisoned him against me but he was distant before that too. In fact I safeguarded all my Mum's savings and ensured her house was in good order to sell (I cleaned it with my hubby so we didn't incur expenses!) so my brother got his half of everything and I never even got a thank you. My husband wanted to punch him and he's very mild mannered. The SIL had the damn nerve to say I'd jeopardised 45 years of friendship (known her since I was 12 and she was 15) by "my behaviour". I had no behaviour! I told her she had to step back and see how she was being .. Horrible! I doubt I'll ever see them again. She's been skulking round the area last week visiting a friend. Glad she didn't try contact me and more glad I didn't see her!

    Jules .. Insist your sister does help as if she's living near to your folks too then that's even worse you have to make a long journey when you feel so unwell. Not to mention an expensive and difficult one getting on and off transport. You see those selfish people don't want to know how much it knocks it out of you. Tell her you're housebound if she refuses again. Make her help. Hope you are alright NMH and Jules I hope your evening at the party goes well if it's this weekend. xx

  • NMH .. We haven't fallen out .. Bro is just unbelievably distant and selfish. x

  • It just seems just such a shame & a waste. When I hear things like this it makes me glad I was an only one, when you've no control when someone who should be so close, more so at the time of losing a parent, but they choose to be so horrible & I'm sure I'd feel undeserving of their half, even more so when you don't even receive a thank you for all you've done to save on expenses, not only your money but his!

    I agree Jules, make it impossible for your sister not to become involved, she needs to be, not only because it's so difficult for you at the mo but for her to see why otherwise things will never change & it will all be left to you for as long as you're needed by them. x

  • I'm dreading the party. So tired and upset. Can't stop crying.

  • Can you try and go for a couple of hours. Is the b&b close enough to retreat to should you need to make s break and go back.? xx

  • Well I made it. I even danced a bit too. An utterly shattered today thigh. X

  • I do feel like I'm losing my mind. My mother has early onset dementia and depression and she's like a shell. Her personality has gone. She doesn't smile or laugh she just functions. I love her but I don't like who she is now. She's not my lovely bright adventurous fun mother anymore and I find myself crying in the bathroom 90% of the time when I'm here because I miss her so much. With my dad in hospital it's even worse. I get so frustrated with her too and then I hate myself. She won't even try to do things and then forgets and so I have to do everything. I resent her I suppose and even though I know it's not her fault I can't seem to stop myself getting upset. I miss her and I guess because I'm alone she was the one person that would always be there for me. And now she's not here either so I'm more lonely than ever.

  • I'm on the move at the moment so can't type much but I hear you. My Mum had Alzheimer's but she didn't lose her personality. Oh was Beth hard though as she changed even if she was loving and funny. Can you get support from an Alzheimer's nurse on this as they can help you understand more. Hugs. This is s lot and I flared many times when's she was unwell: it's a lot to much to cope with. xx

  • I'm so sorry about your brother too. It's so hard. My sister and I were so close but she's become incredibly selfish and I can't handle it. At least you have a partner because it's hard when you have no support.

  • I do but he's mega stressed with work and I hardly see him during the week at the mo but yes he was supportive but I did the main part of everything. Just the was it was. I'm sorry too you it sister is not supportive. There is s selfishness here. 😣 xx

  • Hi Jules13

    I also reiterate everything that nomoreheels has said.

  • I so understand where you are coming from , this is how I live my life too, you become a loner and very isolated , feeling for you right now , it's a complete change of life , hope it improves for you soon

  • I don't want to cut myself off from everyone but it becomes easier because you don't have to make excuses or explain. I keep thinking... can I survive on my own for the rest of my life. If it's this bad at 49, then what will it be like in 10 years, 20 years. My future seems so bleak and I don't talk about it because I don't want to upset anyone.

  • .

    Boom‼️

    Nailed it! πŸ™ƒπŸ”¨

    That's why it's imperative to get ahold of this disease now. ⏱

    Working towards halting progression & nudging it into remission as best as possible.

    This is not a disease best managed 'on your own'. πŸ•΄

    You need/ deserve the loving support of those around you. πŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘¦πŸ‘¨β€πŸ‘©β€πŸ‘¦β€πŸ‘¦πŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘§

    If you can't get it from a live-in 🏚 loved one πŸ‘©β€β€οΈβ€πŸ‘©πŸ’‘πŸ‘¨β€β€οΈβ€πŸ‘¨ , then you'll have to make do with those who've a listening, caring πŸ‘‚.

    Laser focus ⚑️ πŸ‘€ on getting as well as you can now, so you minimise (avoid) attempting to 'go it alone' down the road πŸ›£ .

    (Not a disease πŸ€•πŸ€’ for 'lone wolves' 🐺 , a disease for 'pack creatures' πŸͺ 🐫 πŸƒ .)

    .

    🐎 🐎 🐎

    .

  • Please don't isolate yourself Jules, that's the worst thing you can do. Reverse psychology, you won't be like this even next year, positive thinking. x

  • I'm 57 and I'm anything but an old crock .. I don't look it and don't act it but yes I have some limitations .. One of them being my own self doubt niggling away at me! xx

  • I'm the same age as you Julie & like many here also have OA (only old people get that, well no!) & will not feel like an old crock, I refuse to! Some days I may look rickety but that's my stupid feet which refuse to toe the line (get it?,) & respond to MTX, not my fault, I deny ownership. πŸ˜‚

  • I'm right there with you .. Dodgy feet and OA too as well as RA. However we are strong minded and won't be beaten by this. Somehow the feet will toe the line! 😘

  • Glad to be right beside you! They can't keep us down, we were given this life because we're strong enough to live it.

  • You said it! 😘

  • I'm really pleased you're back. x

  • Thank you and I'm really pleased you're still here on the board! x

  • 😘

  • I'm a lot older than you & Jules nmh, & I live alone & have been up & down with RA for almost twenty years, & now developing OA! Oh Joy!

    It took me a while to work out...but I find self preservation means you have to be selfish sometimes! And you certainly have to gather together a few phrases like"well my latest meds could cause (choose your side effect) " to really concentrate the mind of the disbelievers!

    But bottom line we have just got to soldier on until some genius finds a foolproof way of defeating this awful disease. Personally I don't have time to " hold my breath", but for you youngsters....I really hope it happens for you!

  • Keep soldiering on and you have a young mind and outlook we can tell from your posts. It's always lovely to read them. 😘

  • Don't think like that Jules.I was diagnosed nearly 20 years ago & like you had just moved away from London & all my oldest friends......I had just retired, so making new friends wasn't easy, but I'm still here & it's not at all bad.

    I coped when i was having a really bad spell by diverting enquiries about my health & just waiting until I was through the latest episode before I surfaced! I agree it was a bit lonely, but i preferred that to the effort of trying to " keep up" when all I wanted to do was curl up & sleep. That brings unwanted stress.

    Right now things are going well...but with RA you just never know....now your meds are kicking in you can slowly surface....but put your foot down regarding your sister! If you let her get away with her childish behaviour....she will just continue. Maybe asking her for a financial contribution to employ some one to help your parents would bring her to her senses? After all serious situations need serious solutions. I printed out a lot of really alarming news on RA & showed it to people who would not believe how poorly I was!

    Don't be coerced into damaging your health even further by a selfish sibling.

    New house looming remember!

  • I will stay positive. Thank you so much for keeping me on the right track.

  • 😘

  • Please stop being afraid that’s no good for you , I know it’s a learning curve but you can do it RA is a part of your life now ,never be afraid to do what you want you may have to learn a different way of doing something but believe me you can and if it’s important you will as to going out with your friends to eat you could always ask where your going before hand so you can find out what’s on the menu to make sure your alright with the food , about work just tell your boss so you can sort out the best things for you , I hope you don’t mind me telling you this but I’m a 32 year veteran now , if you ever need to talk or blow off steam this is a great place with great people πŸ¦‹πŸ¦‹πŸ¦‹ Dawn

  • I know. I'm not sure I would have made it through the last ten weeks without you all on here. It's been a godsend. And like anything, you learn to adapt and live with it. I did the same with my thigh and knee replacement a year ago so I know I can get through this too. X

  • I know you can , we find strength when we need it . Just take care love πŸ’•

  • RA and associated autoimmune disorders rob us of our lifes. And fear creeps to replace confidence... What treatment have you been given?

  • Week 10 of steroids, hydroxychloroquine and sulphasalazine. X

  • Hope it is bringing you some much needed relief. Make the most of your better moments without going overboard though. Are you aware there are biological drugs now? Look it up on google and don’t be afraid to discuss it with your rheumatologist. I have been injecting Etanercept (Enbrel) for over a decade now. It has helped a lot.

    Take care xx

  • I'm not there yet. They won't prescribe biological until they have exhausted the DMARDS.

  • This is dreadful. I have read somewhere that it is recommended to start biological drugs ASAP now as opposed to what they used to do but it’s obvious they are not working according to recommendations! Nothing has changed. They want to save money. However you could write to your rheumatologist saying the quality of your life is very poor and you feel you can’t go on like this and would like to be given Etanercept to see what improvement you might get in terms of pain relief and quality of life. Check guidelines for treatment of RA and print and add that to letter.

    Just an idea. I understand what a misery it is... have had RA since 1981.

    Take care.

  • There have been randomised clinical trials, studies & discussions re initiating newly diagnosed patient's treatment on biologics since 2012 JGBH. As yet nothing has come to fruition, no such recommendations as far as I'm aware & I try to keep up to date. I would think because as you suggest cost is prohibitive but also that of 4 anti-TNF's/biologics trialled at various stages only one, tocilizumab (monotherapy) was considered to be superior to MTX monotherapy, currently the preferred initial treatment or gold standard. Rheumatology is notoriously underfunded so I don't know about you but given it's been 5 years with no indication of changes in guidelines I think it's dead in the water when comparing cost when related to MTX. That said who knows what the future may hold but I'd be wary of recommending Jules broaches the subject with her Rheumy given she's already showing positive response to the treatment she's only been taking 10 weeks.

  • That is a great shame! Of course methotrexate is much cheaper... I didn’t not get on with it at all even when part of treatment with Etanercept so stopped having it and only on Etanercept now. In my case not having mtxate did not prevent Etanercept from working.

    I was not suggesting Jules should give it up but that perhaps a biologic would help her better (from my humble experience) although it does not work for everyone. Jules seems to have had such a horrendous tough time. So pleased metxate is starting to work for her.

  • From how it seems here MTX is one of those meds but generally, if we're to believe the stats it is tolerated quite well, somewhat surprisingly when used as the anchor drug for biologics particularly in those who've not tolerated it or had it withdrawn prior to biologics. I may not have worded it correctly re Jules... I was responding to your suggestion that she write to her Rheumy saying she'd like to be given etanercept, apols for any misunderstanding. Not sure copying the guidelines (I presume you mean to qualify for biologics?) would help her cause as she appears to be responding to her initial treatment of double therapy plus steroids (in line with NICE guideline 1.4.1.1 nice.org.uk/guidance/cg79/c...). I just didn't want her to have her hopes raised, but seems she's aware of the guidelines as she said in her first reply to you. I was just following on from my other replies earlier on in the post really. I'm really pleased to hear she even went to the party & managed to dance, that's really encouraging having only been diagnosed 3 months, even if she was shattered the following day!

    Good to hear entanercept is working well for you though.

  • You've both lost me now. I'm not familiar with all or most of the drug treatments. I'm trusting my rheumy to guide me.

  • That's just what I did & the best thing you can do too Jules. No need to addle your brain with meds you won't be considered for at this stage & don't need to concern yourself with.

  • She has said if my blood tests are still high in a few weeks and no real sign of improvement then she may add methotrexate. Eek.

  • Well if there isn't I hope you respond to it as well as I have.

  • I'm not on methotrexate. I'm on hydroxychloroquine and sulphasalazine. I have only been on them for 10 weeks, and only on full strength dosage for 7 weeks.

  • She said she won't try me on anything else until I have given the current drugs 3 months.

  • Let's hope this treatment works well for you. Let's hope you will be given the chance to try Etanercept, although it does not suit everyone. We only can live in hope. Take good care.

  • A lot of new research now that shows traditional drugs (MTX, hydroxy, Sulpha etc) give as good results as biologics. So the most important driving factor should be what works for you, and that is still trial and error.

  • Jules

    Hope you don’t mind me asking but has anyone suggested your low mood and tearfulness could be caused by sulphasalazine. It can make some folks very low and depressed. Steroids in high doses can also cause highs and lows for some. May be worth mentioning to your rheumy nurse??

    Just a thought.

    BG

  • I did mention this yesterday to the nurse and she said it could be the drugs making my mood so low but didn't offer to change them.

  • Hiya Jules

    Thanks for replying.

    The side effects of SSZ on me were so bad that I used to pray I would get a rash.... this was because the rheumy nurse had told me to stop immediately if I got a rash!!! I never got a rash .......so battled on until they admitted there was no benefit taking it for my RD ... only side effects., Only with hindsight can I now say I should not have been so quiet about what was happening to me.

    Well done for battling on. Soon be the 12 week mark and it may all settle down as these DMARDS do good for so many but in the meantime you are not alone. Lots of online folks to help you along the way.

    Keep sharing. It is really helpful for you and us.

  • Now on triple therapy. Added methotrexate to the mix. Terrifying. I asked why they couldn’t just stop the sulphasalazine and hydroxychloroquine then and just leave me on one but they said it works better in combo. Ugh.

  • Let’s hope they are right. I have met folks for whom MTX works and they tolerate it well.

    We are all so different when it comes to drug tolerance or intolerance and yet one thing we have in common is that we need to take something to get this wretched disease under control.

    Thinking of you. Keep talking to us.

    BG

  • Yes. My nurse said to stop beating myself up because I was crying all the time. That the drugs were making me very low too.

  • Julie don't think like that . You have got to think positive otherwise you won't venture over your doorstep. Going out with your friends it takes you mind of your worries . Your friends will understand if you cannot join in their activities Maybe tomorrow or next week they will find a cure for our twisted joints . Yes you have days when everything aches . And rest up these days . Don't get too tired as it will be worse for you . Watch what you eat there is some foods that irritate your stomach Cauliflower cucumber fatty food too much coffee these are just a few kinds of food that I find difficult to eat I have difficulty in swallowing I have a fork it's also a spoon and a knife at the same time I find it difficult holding a fork and knife a friend offered me this tool I am right handed but have had to learn to use my left hand for everything bar writing and that is only done when it's necessary . Explain to your boss the situation I'm sure he will understand he may suggest you come in part time until your medication starts to work. Margaret

  • I'm doing the same. Using my left hand for everything but writing. I only have one cup of coffee a day anyway and eat a very healthy diet so that's good. Yes. I need to keep my friends close rather than retreating. You're right. X

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