RA is a very cruel illness. Taking a very capable woman and making her helpless.
I walk around my new cottage at all the jobs I could do, and I can’t physically do a single one.
Hopefully you will find the right drugs that will suit you and that will give you your life back 😘
But I am. No one can help me unless I pay them.
Rubbish !!! if that were the case most of us would be lining up to jump off a Cliffe ! The fact is RA is a disease that is treatable and controlable so why the glumness. Just take small steps and stop thinking about the big ones, take it slowly and if you keep thinking like this you'll end up so depressed you won't be able to enjoy your new home. OK you might not be able to wash down all the walls or build a wardrobe yet but can you look at walllpaper books, choose some new wallcoverings or paint etc? No one is saying its easy, but life does go on and only a very small majority actually do have severe damage.
I couldn’t agree more Medway Lady having a positive and can do attitude helps a lot BUT there are days when we can quite happily give in to this blinking condition! I hope you feel brighter soon Jules..like ML says taking small steps can make all the difference..don’t give up.
What small steps can I take?
It’s up to you whatever you feel, you’ve had some good advice via replies to your post. Not sure if your reply was to me about worrying but I know from experience, worrying is not an easy thing to stop doing when you’re first diagonised especially. I had a tough time and it took me a while to get on medications that worked so ended up with quite a bit of damage. Small steps for me were actually, getting out of bed, washed and dressed as it was much easier not to. Why don’t you try giving the NRAS Helpline a ring for some specialist advice and support? Take care..we’re trying to support you with our replies too 😊
I think we've all had the bad days, especially in the first months. Sometimes you need to allow yourself to wallow a bit in misery, before you can pick yourself up and keep going. Just don't wallow too long.
So yes, it's a rubbish disease, but you will get it under control and you will get your life back. I couldn't use a knife at all when diagnosed, but now I can do most things fine. So you'll be designing again soon.
It’s been 6 months.
Which is unfair I agree. But only 8 weeks on MTX so think may well change soon. It's a sad reality that it takes so much time to find the approach that will work best for each person. I started to improve after 9 weeks on MTX, but all in all it was a year to get back on my feet - sorry.
I’ve had RA for 26 years since I was 13 years old so I have a bit of experience in this department. The best thing for you to do is exercise. You have to remain active. It will hurt at first, but it gets easier. This disease will make you weak, which is what causes most of your pain. Get up, walk around and most of all STRETCH. You have to keep your body limber and in motion. You have to learn to listen to your body as well because it will tell you when you just need to rest. Dealing with this disease is a learning process, but your mind is a powerful thing and if you give into the “woe is me” attitude so will your body. Just a little tough love. You can do this! You got this!
You are so right I exercised for five years straight and felt great but I had a lot damage so it has been hard to get back on my feet both shoulders replace both knees and they want to do my elbows and know my ankles and feet are acting up but enough is enough no more replacements I have suffered with severe RA for 23 yrs mines is so aggressive sometimes I don’t know how I have survive this long especially mentally now I am going through menopause oh God help me I say I am definitely going to try to get back to exercise it was the only time I can say I ignored the disease.
I cannot afford to do anything so there is no point looking at paint books and wallpaper samples. I cannot work therefore I have no money therefore I cannot do up my house. It’s simple economics. I cannot do the jobs myself because I cannot use my hands. I live on my own. So yes, I try and stay positive but it’s been 6 months with no improvement to the pain. I’m not sure where to turn.
Another thought I feel is worth a try. Can you see a psychologist to talk it out? I was referred from my rheumatologist after diagnosis as she said she couldn't spend time talking like that with me even though she would have liked to. She recognised that I had lost so much (well we all do but and said to become inactive after being a sports person was so hard to take) so I saw someone who took my anger away. I believe my RA was caused by a horrible job and vile boss who pushed me to the limit with 14 hour days. My fault for letting her do it and she was a friend of my brother's wife and difficult for me to leave but I did after a year. Then I started with RA symptoms.
Most countries have programs to help people in your position. UK has what I think they call PIP, US has various programs like Social Security Disability, and if approved, they will give you an income, pay for your meds and healthcare, and may even give you home health care visits for a time. Please do not just give up. Yes, the disease sucks big time, but most of us on here have had to adjust to RA, and some of us (like me) have 7 or more autoimmune diseases. Not trying to minimize your condition, just trying to offer comfort that there IS light at the end of the autoimmune tunnel. There is a number somewhere here that you can also call and get advice from (one of the UK folks can give it to you...). Here's sending you gentle hugs and hope for some help soon.
Go to a second hand paint co operative, you've the internet so access to information. Call or look up the Benefits Agency to check on benefit entitlement as you can't live on fresh air and are unable to work. Six months is a short time however talk to your consultant as it may be another medication might be better for you. But feeling sorry for yourself all the time actually does'nt help you. I'm sorry your in pain most of us were or sometimes still are; but its perspective really try to find some clubs or activities nearby; take it slowly but not doing something even if it hurts actually might just be worse for you. Ask about splints, I don't need them but some do say they help.
But I still think that RA is at times inconvienent, at times painful but its not terminal nor does it destroy lives. Your not the only capable woman who has it, or do you thin we're wimps and really on others all the time? I assure you that I don't and am just as capable, walk and swim as ever I did and life is normal but this is several years since treatment began. Its not been an easy road nor quick as their is no magic cure but its vital to stay posative and try not to moarn what you can't change but move onto what is a different but just as important future. Noone is defined by illness and I take great exception to anyone who offers me help because I'm a woman, have RA or am short. I'm me and your you, that has'nt changed at all. So take heart and talk to your GP if you think life is so bleak because it may be nothing to do with the RA but another underlieing cause.
I've just noticed you've stopped taking steriods that may be the reason you feel bad the dose is usually tapered off not stopped completly in on go as it sometimes has an affect of causing a depressive action.
Definitely the stopping of steroids will make Jules feel worse and stiffen up. I promise you Jules that hydrotherapy will help you and so will physio. They won't hurt you and will do a exercise programme just for you. x
You look so young I am so. Sorry what your going through I was diagnosis when I was 27 they told me I would be in a wheel chair in 6 months and dead by 35 because I also have Lupus RA Osteoarthritis and Fibromyalgia they told me they have never had a person get all those thing at one time it took months for them to diagnosis me correctly I am one of the first people to be on enbrel Celebrex remicade they had no drugs available when I became sick in 1997 my life was forever change I was a young women that could no longer take care of me I could not bath myself comb my hair brush my teeth I could not wipe my butt and I move like I was hundred ten . I have many resources to get u help you can you email me and I will send u my number I am in Steger IL. I hear and feel everything Your saying I can’t work myself I can’t use my hands but there is some relief but the side effects can be so horrible but you have to decide what means more and that can be hard also I have 33 yrs of information and still read and look everyday to make my life better 😄. I hope u feel better real soon please email me email@example.com
I’m so sorry to hear that. Thank you for writing. X
Easy to say stop worrying. I meditate to stop my mind whirring, even for half an hour. Then I get up and try and do something and it hits me all over again.
Hi.I think you are fairly newly diagnosed? If so, then just have a read of some posts on here to see how many of us, myself included, had a truly awful time initially. I had an explosive onset, came on overnight. Needed almost 4 months off work and was planning how to survive financially without an income. I panicked and put my house on the market to move to a tiny bungalow ( I did take it off the market and am still there for the moment). I couldn't drive, couldn't bend my knees to get in the car, or sit on the sofa, couldn't bend my knees at all and as shoulders were affected couldn't push myself up again, could no way get in or out of bath! I could go on!!
I'm 4 years in now, took just over a year to get properly sorted. Now I work part time, I walk, swim, play tennis, and can perfectly well manage my house and garden. Yes it's a rotten condition to have, but, it's mostly treatable these days. You need to relax, give it time, and things will improve for you. Hard I know, but you will get there, just takes time.
Mine took a year too to come round and many of your limitations I had. Unfortunately they couldn't diagnose me so wouldn't start me on RA meds and I got joint damage early on so need knee and hips replacing now. I'm still walking well and I am strong and do a lot of housework and gardening so all is not lost and I did two physically demanding art degrees so you do get there. x
Jules.....4 years after I was diagnosed with RA & still not under complete control pain wise......I was diagnosed with breast cancer. That was stressful......especially having to drive myself 30 mins each way every day after surgery for 6 weeks to have radiotherapy!
I know how awful RA seems so soon after diagnosis...have known for 18 years.....but you have just got to try to be more patient..you can't run before you can walk so to speak.
You will find the right drugs for your particular condition, but being so stressed & impatient you are just winding yourself up, & the drugs you are taking don't have a fair chance to work.
Do talk to your rheumy nurses & see if there is a support group you could go to.....believe me I felt very sorry for myself as I realised I was going to have to rethink my planned tennis playing retirement in the sun, but attending a couple of support meetings made me realise I wasn't that bad after all...... by this time I could walk without sticks, use a knife & fork...not just shovel my food up with a spoon ....& with a bit of planning fly off to see friends in warm places.
We are all bloomin' unlucky to have this disease,....But I'm afraid we have to make the best of it.Please talk to your nurses & ask for better pain relief......NOW.
Absolutely agree AC that stress and impatience will make you so much worse Jules. I know it's hard and what's harder is you are alone. As someone else has said and it is a very good idea .. See if you can join a local RA meet up. Check on the NRAS links. My local one stopped four years ago but I would love to try get one of information again but a bit busy at the mo. To meet people who totally get it is often a great relief.
I feel similar myself Jules, so can empathise. I'm hopeful though that things will improve. I'm certainly better than when first diagnosed. At least I've now got a diagnosis...there's a certain amount of relief in that. At least I'm not mad right??
It is very disheartening not to be able to do the things I once did with ease. I used to have a very difficult professional job (not that I'd want that back!) Stressful!!! I would like to be able to walk properly. My son had to help me down stairs the other day. That made me sad. But...I feel something is easing off a bit, as do you...remember?
Be kind to yourself.
Hoping you are soon feeling better too. x
I have gone from being a fit ex army girl to a 40 yr old with old lady bones! It was a huge shock being diagnosed last May with RA but it came with relief as I had suffered with debilitating issues for 2 years and the diagnoses came with immediate medicated help and a side dish of .....I’M PETRIFIED and HOW WILL I COPE!!!
The only advice I can give is stay strong. If you are like me you will go through your dark days, feel frustrated, have extreme tiredness, nauseous, anger, tears, vommiting, loss off hair, sex drive,have lack of appetite, regular infections and generally feel sorry for yourself, but what doesn’t kill you will make you stronger.
I’m on Methetrexate, Hydroxy sulphate & folic acid. I tried Oral methotrexate for 6 months and that made me feel terrible and when I say terrible I mean shocking! I then learnt about Metojet pens from this website, asked my rheumy nurse to put me on them ...it was nerve wrecking to inject oneself but now I seriously recommend it. I feel so much more human, less nauseous and find the day to day life more bearable.
I’m a theatre nurse, I found it tough going doing 10 hr days, so I decided to go part time initially for 6 months just to give my body a rest. I’ve learnt to be kind to myself....quite a tough decision to go part time as I’m a proud woman. Financially it’s scary but god do I feel more like my old self! I’ve learnt to slow down, rest when my body can do no more & not to sweat the small things like housework!
A Tip....I found ginger biscuits were my saviour when I felt nauseous with Oral methotrexate.
I’ve followed this website on & off since August & like most silently observed. I don’t want to tell anyone how they should feel, but I feel you need a strong lady like me who has been broken and refuses to give up to say to you....it’s ok to feel vulnerable but like everyone says you will do it, you will cope and then in time you then will give advice to someone who is newly diagnosed.
My saving grace has been my partner, he’s been fantastic, he has seen me at my worst & even positioned me into various sex positions prior diagnosis oh the shame but god did we laugh. I’ve been to hell & back Jules, got the tshirts & the books....but I’m telling you FIGHT!!
Humour is a must you need to laugh at situations, the brain fog is embarrassing when you double book yourself, burn dinners, forget vocabulary....oh the list is blinking endless. Laugh in public but cry in private if need be.
Jules, you are not alone. Hang in there & take this bloody RA by the balls & own it!! But mostly it’s about winging it everyday!!!
Take care & chin up!
But I am alone. I have no partner. I have no one to help except my builder, who I have to pay obviously. I have now run out of savings and am sleeping on a mattress on the floor which it takes me 5 minutes to get up off because I can’t push using my hands. I was so positive on January 1st thinking it will get better but when you are surviving on baked beans and tuna day after day, and can’t even go for a walk outside because everything hurts so much, I’m not sure how to be positive anymore.
I’m on the same drugs as you. But not the injection. As soon as I stopped the steroids, the pain returned and has knocked me for six. I cannot stay on steroids anymore because I was on them too long. But for the first time in 6 months I now feel the hideous pain from my knee surgery and back pain. The steroids really helped those too.
Just very very down. I know I will bounce back but right now I just want it to stop.
I'm own too. My son lives miles away. Feel for you over the bed issue. I was lying on a futon for ages because I couldn't afford a bed. Eventually purchased another mattress to go on top of futon. Bought the bed base later. Getting up and down off the floor is no joke. If you're short of dosh (like I am) you can sometimes get good bed bases off free cycle. In the end I got a cheap (good quality) one off Argos. Only problem was putting it together...a whole new story!!
What about neighbours? I know your new to area, but ask a neighbour for help. Folks in general, don't mind helping out. It took me a while to get to know my neighbours because I isolated myself, but I know them all now. I feed chickens and cats and walk dogs when I can. In return, they help me out when I need it.
I still have cracking temper tantrums when I'm in pain. I have been known to shout at trees! I joined an evening choir, but had to stop because I was so knackered. This upset me. However, they've said I can go back when ever I like. Evenings are pretty much a right off for me. But I do stuff during the day when I can. When I can't I just sleep.
I've learned from experience that feeling angry and resentful just makes me feel worse.
Just be kinda to yourself...and get a bed as soon as you can. That will make you feel better for sure. X
Please get help Jules, you have a few options.....ring the NRAS helpline, book an emergency appt at your gp Surgery or speak to your rheumy nurse/helpline. I’m sure it’ll be a huge relief to talk to someone that is there in a professional capacity,who can advise you & probably has heard it all before! They are there for a reason....you need to start somewhere,make the call.
You are not alone,people on this website have taken the time to offer good advice & moral support,not just for you but to everyone. I for one found the advice beneficial and a comfort knowing there are others like me.
I would think the steroid injections that you’ve previously had are making you feel low....in time that will pass once the steroid wears off & the meds take over.
Be brave,make that first step to get help and take control....Make that call 💕💕
Helped me as I said to offload .. Stopped me going nuts with sadness. We had fun too in the sessions.
Jules ring your rhuemy nurse and your gp and the benefits people even the local church they WILL help you and we are always here 🙂
I didn't just feel nauseous on oral Methotrexate within an hour of taking it I vomited for the rest of the morning. To say I'm nervous of coming off prednisolone is an under statement, but I am willing to try the new stuff, JAK inhibitor. If it works without the sensitivities I will be so very grateful. I couldn't undo the flipping petrol cap today, had to ask someone. But without my doc who is marvellous, and the rhuemy nurses I wouldn't be driving my car. I am not pain free yet but I'm hopeful
Jules I believe the most important thing as we grapple with RA that is yet to be controlled is to feel heard and understood, even if others have had different experiences or enjoy different circumstances. No one really knows what it's like to be you.
I'm so sorry that you are alone and vulnerable and frightened. Even now after nearly 37 years the thing that upsets me most, even more than pain, is the fear that I can't do all that I must do let alone all that I'd like to do. By now, I'm able to calm those fears with the knowledge born out of experience i.e. I've been put on a drug that really knocks my RA on the head, and have been able to regain control of many things, but that hasnt happened for you yet and until it does it's nigh on impossible to believe in all the positivity that others implore you to embrace. You'll get there eventually but it will be in your own time when you find that magic bullet. Hang on in there - and make sure your Rheumatologist really understands what your quality of life is like.
Jules you’ve had some great advice in the previous replies they are very inspirational. They will help loads of us, well done gang.
Hope you find some improvement soon Jules.
I second the ginger biscuits, jelly babies help too, worry about the teeth another day. Oh and be kind to yourself, what you can't do today, can wait. And thankfully you've found this site, so may lovely people on it, all in a similar boat. Hope today is a 'better' day for you.
Hugs and thoughts to you
Hi Jules, please try be calm. I find getting upset brought more flares. RA rendered me absolutely at a standstill and in bed all the time sleeping 20-22 hours a day three years ago when hospital failed to get me in for infusion, so I fully understand. I only got up to go to the loo and I didn't go downstairs for ten days at one point. Was aided downstairs (took a minute per stair to get down) to go for my RA infusion when they finally got me in. I was pretty much the same and lost two stones in weight on initial diagnosis in 1995. I couldn't lift my legs up to climb stairs or get in the bath. I couldn't feed myself my hands were so swollen and stiff and full of inflammation. It was in my jaw so bad I couldn't chew and open my mouth .. Everything was cut up small. I did have my husband but he had to leave me alone and go to work so I was alone for 15 hours a day as he travels mostly. Then 12 years ago I was diagnosed with an over active thyroid which once again stopped me in my tracks and I plummeted to under six stones in weight and could hardly move so I understand your panic and frustration. It is very hard and destroys your self esteem and all your confidence and gives you many worries which I can see you have and I am sorry to see those. I can see the mattress situation is not a great one as a good night's sleep is very important. I would make that your priority. I know things will improve but it is hard if you are alone and also not the patient patient type. I have been too patient on occasions and that has been my downfall letting hospital mess me about. The good news is I got a lot of mobility back and controlled the RA and did three degrees (no not them!!) and as an artist printmaking and standing up in studios for many hours that is quite some achievement! I did my BA Fine Art, Masters in a Visual Art/Printmaking and was studying business when I was diagnosed so completed that. So you do recover and you do achieve things and get to do what you want. You might be a little slower and I won't pretend things are easy and you have to get round things in a different way but you do. Have you seen a physio from the hospital rheumatology? Mine was my saviour .. Absolutely and also an Occupational Therapist? They helped me with hand splints and back support cushions. I think a more comfortable environment where you are living is essential but realise that isn't easy when you've recently moved in. Hoping for a turnaround and improvement for you soon. x
Thanks for the positivity. I’m glad you’ve come through it. And it sounds like you’re a changed woman.
Sadly, my occupational therapist has cancelled my last 2 appointments and yesterday I turned up, having not seen her in 4 months, and she didn’t turn up. So you imagine my turmoil. Even the people supposed to be helping, aren’t there.
At least you have a partner. Even if he was away a lot, you knew he’d come back at some point and knowing there will be someone there is amazing. It doesn’t help I’m in a new town and don’t know many people yet. My parents are too old to visit and my sister is a workaholic and the hardest thing is, they just don’t “see” my illness. They hear me grunt and groan but can do nothing to help.
The other ironic thing is my father suffered from RA when he was 50 so you would think he has some empathy. Not. X
Hi Jules i sympathise with you, I battled for five years with my GP telling him how i was feeling then his reply was always it's your Osteoarthritis that is the problem, when i tried telling him it's totally different pain to that he wasn't having any of it. I tried for an appointment one morning to see him to be told there were no appointments for three weeks ,so my husband took me straight to A&E where they put me straight on the drip for pain relief and was asked who my RA Specialist was , when i told her i didn't have RA she told me i had it to go back to my GP in the morning have bloods repeated and a Nuclear Scan to be called back my GP who would have given me the world if i had asked for it. I was then diagnosed with RA and Lupus. I lost all trust in my GP so i changed surgeries and these are fantastic, It is going to take me a bit more time to improve as five years has taken it,s toll i am on Methotrexate and Benepali at the moment ,but i am waiting to see what else i can be given. I inject myself twice a week and i was very independent at one time so having that taken away and needing to ask for help it not my way, but we are all in the same boat starting off but it does get easier on times i can't break the habit of still doing things on the same day but i just take it day by day. My family are the same they will ask how i am feeling and they will say i get that i know how you feel, but they haven't got a clue. I am very lucky though to have a fantastic husband and two great kid's that i couldn't be without and have just been told we are going to be Grand Parents for the first time which has given me some to cling on to hope everything works out for you soon you will get there at some point like us all take care of yourself
Have a look at a1help.wixsite.com/benefits
Lots of help and advice about benefits you might be entitled to. They also have a Facebook page with lots of info on it.
Please be assured that you will get your RD under control but you must tell your rheumy team how you are feeling as otherwise they cannot help you.
I talk to my Rheumy team every two weeks. Keep a detailed diary. But it’s a waiting game as you know.
And I have been awarded benefits but I’m not sure who can live on £100 a week. To cover mortgage bills and food. Hmmm. I’m very creative with money but this just doesn’t add up.
I’ve never wanted for much. I don’t have a tv, I don’t value assets. I value friends and experiences and I guess that’s what I’m struggling with. I’m usually the one throwing dinner parties, organising walks, days out, trips to the theatre. I usually fix other people and help my friends. And I just can’t do anything. So my day to day life (not including work) has also been turned upside down.
If I was well, I would be inviting my new neighbours over for dinner but I can’t bear anyone to even look at me. I’ve aged so much. I look tired and anxious and have taken down most mirrors so I don’t have to look at the pain on my face all the time.
I have an amazing therapist but she’s amazing for a reason and costs £60 an hour. So I’ve had to knock her on the head for now too. So go through my GP would take another 3 months, so I’m told.
I will get there. Thanks. X
Jules...find out where your nearest CAB is & pop in & have a word. They can point you in the direction of all sorts of things from a bed to a slow cooker to seeing if there are any financial benefits you can claim. No one else can do this for you....you have to explain your position.
I know you won't want to do this.....& will probably hate me for saying it but if as you say you are broke , living on beans & tuna,& sleeping on the floor.....how much worse has it got to get before you get fired up & that independent fiesty woman pops up & starts to fight to get her life back on track.?
I know you are in pain....that will eventually be fixed...but how long will it take to fix you if you don't believe in yourself?
We have all trod the path you are walking....many of us without a partner or much money....but most of us have come through it, & figured out a way to live a decent life...you can't just sit in your new home & be sad.....fight it Jules!
Sound advice re CAB
See above... it kind of explains things a bit better.
But also, as you know, when you are sad and low, and someone says “cheer up”, it doesn’t really help. Xx
I'm not saying cheer up Jules ...more like think outside the box. Shutting yourself away is not the answer.
Have you spoken to your mortgage company & explained your situation? They will have ways of helping you, but they can't help if they don't know what's happening. It is possible you could not pay for a few months,& then catch up when you are earning again. A letter to them from your rheumy would obviously help.
Right now you should be trying to be calm, taking care of your pain & of finding a way to be able to cook nutritious meals. Tension & anxiety is one sure way to decrease how drugs work.
I know you have family responsibilities, but you need to take care of your health.....no gain if all of you are unable to help each other.
I really do know how you feel....I was alone, in pain & angry 18 years ago, but I did have a roof over my head & decent food to eat......so I really do understand the frustration you feel for the situation you are in.
If you look as bad as you say....that is not the RA Jules......I am not saying cheer up, but you can still get to know your neighbours....spruce yourself up, put on a bit of lipstick & introduce yourself & say you have a bit if a health problem at the moment so you are not feeling .....make small talk about how nice the area is etc ......you may just hit on a diamond of a neighbour you can talk to. But it won't happen if you ignore them until you can invite them to dinner...they will have made their minds up about you by then.
You are obviously a great 'people person' so use those skills to fight this horrid disease.
Please try to improve your diet.......it won't matter what wonder drug you are prescribed if you are malnourished.Even a bowl of home made veggie soup will help...I know chopping veg isn't easy..but hack away & when it's cooked it will be fine! Use soft veg ....courgettes tin of chopped tomatoes,leeks. Boil potatoes ..they are easier to chop up then...throw it all in with a veg stock cube. I lived on soup like that during my many flares....& still do when I can't manage anything else.
I wonder if there are any HU members who live close to you who could maybe have a chat with you?
At least you are getting some good advice here......do remember to ask for better pain control the next time you speak to your rheumy team!
Things will improve.
I do speak to my neighbours and they always comment on how happy I am. I’m a good actress by the way. Most people don’t know I’m ill. I fake it until I make it. The good thing is not pretending in here. Xx
You are unhappy, lonely, in pain & admit you are faking it to people who could help you?
But you said look in the mirror & hate how you look! But your neighbours think you look happy.
Come on Jules....tell the truth...even if you fib a bit & pretend you have only just been diagnosed.....let them know you need a hand.
Being a good actress will not help you pay your mortgage.
I agree you can let it all hang out here...but in real life we all take all the help we can get. Most of my neighbours are young busy people.....but they all had time time to help me when I had surgery on my feet & was on crutches.
Tell the truth.....the kindness of people may surprise you.
I just can’t. It’s the way I was bloody brought up. Stiff upper lip. Don’t let people see your weaknesses. My old friends, my close close friends totally know what I’m going through but they are dispersed around the country. Not close by.
And also, I need to just point out that many of my friends and family are going through hard times as well, they all need a kind ear so for me to spend time burdening them with my shite when I can help them seems utterly selfish. X
No Jules admitting everything in your garden is not perfect is not selfish....it's just good old common sense. Although you are feeling so low, I'm sure you would answer a call for help from a friend wouldn't you?So ask!
Neither your rheumatologist nor your rheumy nurse are psychic &'will be wondering why you are still so down despite the fact that they are doing their best to help you.
Unless you open up to somebody how do you think you are going to go forward?
I think everybody here feels for you, but I really think that you must now investigate ways to improve the situation you find yourself in.
You have been given a lot of advice about your financial situation..it's a New Year....now is the time make an appointment with the CAB & see what you are entitled to so that you can at least get a proper bed to sleep on.
Believe me there is help out there...but you won't find it unless you let it be known it's needed.
I have had financial advice and I am claiming benefit. I did that 3 months ago, but it doesn’t cover more than basic food and a few bills. I have asked about mortgage holidays but mine will only do a few months and then you have to make a triple payment the 4 th month. That would make me more in debt.
I will stop asking now because I simply cannot write enough to explain.
I’m down. It’s a fact. And no practical advise will help. My ra team is aware. X
Hi Jules, I'm so sorry that you are so down. It's hard to be positive when you are financially strapped and suffering with RA pain.
I am also speechless at you having to make a triple mortgage payment on the 4th month after a "mortgage holiday".... I don't live in the UK, but that just seems so idiotic and wrong of your banks to treat their clients that way.
I know. It’s a bit rubbish when the reason most people are having to take mortgage holidays because they are in financial trouble. Then it puts them further into debt. Crazy.
Sorry you're feeling so low and worried about finances, awful situation. Have you applied for PIP yet, i really would, not an income but every little bit helps and especially while your symptoms are so bad. Not means tested and you can work and get it.Off work still myself and single, i know it's not easy. Good luck.
Yup... explained that above. £100 a week. Only really covers bills and food, not mortgage.
Jules im another one who knows how you feel and agrees with everythjng thats been said. Ive had this for 15 months not in remission and on cocktail of drugs, been taken of steroids and so struggling to mive and very weepy. Have real problems with daughter who had dreadful labour and a brother in law who has inoperable lung cancer and my dad died a few months ago to name just a few c...p things. Im only saying this to you so you know im another person who knows how you feel. This is the pits but as said by people who have been through this and know better than me do what they say. I got pip after being advised to apply. Anyway thinking of you.
Thanks Ruth. It actually really helps when someone says I understand. You poor thing. I’m so sad for you and your loss of your father and your other relatives going through such awful stuff. I haven’t talked about the rest of my family much but I’m also trying to look after my mother who suffers from depression, a father with cancer and a sister who’s got massive gyno problems and surgeries. Juggling. X
I have to admit that it's been over three years that I've been having an awful time. However. That has been due in part, to an awful gp refusing to refer me. Sounds like you have been diagnosed quickly, so that's a good thing.
Wishing you well.
Yup. Good quick diagnosis but an overloaded RA specialist and an occupational therapist who has cancelled my last 3 appointments. Ugh. X
Hope that you don't have to see that GP again Nettac. 😖 X
That frightful doc left..or was sacked! Same doc who also gave me a drug that was contraindicated with another, and then tried to blame me! Not great.
Same feeling, i was single mom .. 3 dogs... jobs plus i had energy to go out. Right now i go to work and nothing more:(( i do not like this
Shit isn’t it. Excuse the language but sometimes no other word will do. X
Good heavens Jules... Look how much support you have on here! That's summat ain't it!
Yes. Amazingly helpful. X
Jules, this illness is hideous. Some days- minutes- seconds- I want to bury myself in the garden. But life will improve, as everyone here has said. Think of all the love and laughter you still have to come. Do at least one nice thing for yourself everyday- even if it's tiny. Whereabouts in the UK are you? Xx
That’s a lovely idea. One thing a day is very do-able. Thank you.
I’m in Frome in Somerset. X
Lovely to hear from you. I didn't mean one job- one nice thing for you. Face mask, favourite programme, or food!
Ah, you are a long way from me. I was hoping you were nearer so we could help! Even just with a chocolate delivery lol.
Remember, one second at a time! I say to my kids- how do you eat an elephant? One bite at a time ( they have autism so they usually say- but you're a vegan and there's no elephant lol) xx
Haha. Ah, that’s sweet though. One bite at a time x
I think we all have really hard life things to deal with at times on top of our disease. So dont you think we are all doing well. I think you guys are amazing. Thanks.
I also think there are thousands with RA that probably don’t come back on here, once they’ve gone into remission, so we may not get a full picture of people’s successes. I hope so anyway.
Hi Jules, sorry for the delay in replying but since the change of layout/HU modifications I have trouble again seeing and responding on the Board. It's all gone a bit weird.
I still have an awful lot of RA issues to deal with .. Majorly .. Most of us have had joint damage and ops and hurdles along the way and still have. However, despite having a partner through this I have been extremely independent in my handling of it all. Yes he is there and yes of course he cares but many people such as yourself come through it on your own as .. Well to be honest .. That's how it is. It is tough indeed. I had severe limitations right from the start and blips with several failed meds and and other interfering factors, so I do absolutely understand how it goes. It's been 20 years now for me. You have to be as proactive as possible in trying to control it. 😐
That is just not on re the OT cancelling and they are not providing an adequate supportive service, so I think if you haven't already done so it would be an idea to let the rheumatologist or rheumy nurse know of the several OT no shows as not everyone higher up in the team is always aware of things going wrong.
These things were key to me in waiting for the meds to work: Physio & Hydrotherapy; having something to occupy my mind and a social activity. An outlet and a distraction was vital for me. I joined a watercolour class at the local school as it was a gentle easy way to still do some art and get out and be involved. I joined a French language class as I wanted to enhance my conversational skills. It was a massive struggle getting there and back even during the day and I was in pain but I felt good I had done these things and been with like minded people. I know that cash is an issue for class fees but there are free social sessions at many libraries with literary groups and talks and also coffee mornings.
I went to hospital Physio twice a week and it exhausted me but I was even worse if I didn't go. If you can't get there due to logistics or taxi too expensive or bus unbearable, then the Physio will give you the exercises to do at home. Many people say ... I can't move at all to exercise ... but in fact the Physio only wants to start you with small movements and nothing over ambitious. They give you the strengthening exercises to help you stand up from chairs and get upstairs etc. Then build on the basics.
Did I read right that you said you speak with your rheumy team every couple of weeks? Presume this is as you are closely monitored with Mtx. I can't look back amongst all the messages to check as there's such a lot of responses on this thread. Can you ask for referral to a hospital physio? As I have said previously, my saviour in the early days of RA was the physiotherapist who helped me to move again. I'd somehow get to his sessions often hobbling between two sticks and he would show me how to gently unseize and move. Gain a little strength. He would wax my elbows and hands. It took such a long time. To keep at it and not give up.
Try Google and see which arthritis support groups are in your area. If not NRAS there may well be other groups closer such as Arthritis Care. Often there is a support person's name on a poster in the rheumy department that you can phone and chat to. I feel that if you saw how others were with their arthritis and how they've coped and get through it then it could help.
I know how scary it is as it is as it is only three years since I was brought to a standstill and was left to wait for an infusion for several weeks which rendered me immobile and in agony. I was on oral pain tablets and anti inflammatories, opioid patches (still have those) and liquid morphine. I slept 20-22 hours a day and couldn't see a way out. I never thought I'd walk unaided again or even go anywhere outside alone. Loss of muscle and strength do come back once RA is under control.
You don't have the support of your family as they have their own priorities and that isn't going to change I don't feel. I hope something starts to work for you soon. I'm thinking too that if Mtx didn't work (and it still may do) then you are closer to being eligible for a biologic?
I appreciate that being self employed has not helped your situation and maybe when you have come through all this you might think about how you can try plan for any periods of flares and inability to work. Difficult for anyone self employed.
Try get all the help you can and keep plugging away. Don't give up. xx
Amazing post. Thank you for taking the time to write all that. I do so appreciate everyone’s time on here.
Logistics is always going to be a problem. Getting to and from places and the cost of getting there. I do have escapes and I belong to a film club where I lose myself twice a week in a good film.
I am thinking of getting another career on track. Something using my voice.... not my hands. Used to do voice overs so may try and get some contacts back through that.
The OT just called me apologising for her cancellations. And is going to try and find someone closer to me to help. That will be good.
Again, thank you. X
I only wish I could help more. I'm glad you go to your film club as that's a great escape from the pain and the house. The one thing I forgot to add you already addressed so we are on the same wavelength here. Yes indeed address the issue that your hands might not always be able to do what you could before RA affected them. I wouldn't rule out your art entirely but a dual career .. Plan B ... would be an excellent idea. Keep getting out of the house and meeting your film friends and keep contact with your rheumy team as if something doesn't happen after 12 weeks you've given Mtx every chance by taking it and waiting to see. I used to work for an agency in Leeds that organised a lot of voice overs and they were well paid so use that asset too! Great idea. Good luck. X
I am fifty two diagnosis at twenty seven my life has been stolen from me I am on and off medications they cause so many severe side effects I am at the end of my rope I can’t embrace this disease after having it for 23 yrs my life is still a mess and I can barely take care of myself mentally physically and emotionally drained no one can understand you can’t see RA people think they can see our pain the only reason you can see how it has effected me is because of deformity of my elbows, hands, wrist, knees and ankles I ask God all the time please save me give me a break from this nightmare I hope and pray he will save me soon I can’t do any more medications they are killing me.
I can hear me in you. When we are at our lowest, no one can actually say anything to help you or cheer you up. You almost have to go through the pain and misery and it’s up to you to get yourself out of it. I am such an independent woman that I almost know it’s purely down to me to get on top of this, to stop moping around.
So, with all the greatest intentions I decided to get off my arse yesterday and go for a walk. A beautiful stunning day, a walk in the woods and I got back to my car, after 15 minutes, in bloody agony. Then I cried for 20 minutes out of sheer frustration.
Sometimes you just need someone to agree that’s it’s shit. That this disease is cruel. Sometimes it doesn’t help when people tell you to focus on getting better and to be positive. Sometimes you just want someone to say, I get it, I’m so sorry, and that’s it. X
Absolutely agree that it's dreadful. Sorry I cannot add much positivity to the debate because I'm just feeling far too unwell. I'm on my own (family dead) and it's so frustrating that you can never ever get the help you need to do jobs you used to find so easy to do. I didn't swear before RA. Now I scream and curse regularly as I struggle to do things. The dogs are so used to it they just ignore me (followed by a cuddle when they think I've calmed down a bit and I apologise to them).
Re the exercise points made I can do it on a very rare good day but it has absolutely no effect on improving my RA. In fact I find it very depressing to be told "just to wear trainers" to do it as they obviously have no idea just how much pain and how many hours it takes me to get a pair on.
I also had my first breakdown before the RA got going followed by a second within a year of the other. Clinical depression is not something you can snap out of - if you can then you aren't clinically depressed in the first place.
If you sleep downstairs do you not find it easier to get to standing if you use your stairs to help you get vertical again? Other than that I use a gardener's kneeler/seat (depends on which way up you have it). Not ideal re stability but at least you can lean when you cannot grab. Chopsticks and bottoms of bottles can help press things. Have every jar key/ grab device going.
What really annoys me is the concept that some people have that you can overcome this condition or "not let it" stop you from doing things. It's not flu that goes away - it's permanent joint damage in wrists and hands that can never be fixed surgically. If less people kept repeating how they don't let this thing stop them doing things as if it's a bad attitude that causes it those of us without help or hope might eventually get help we need to cope with life and there be proper research into autoimmune disease. I resent the many active pensioners getting a state pension and all the benefits in my area for purely reaching an age whereas because I'm much younger I am treated by a benefits system that assumes you're really able to cope and lying about it, and just left to struggle physically. We're even on a 7 minute consultation maximum every 7 months restriction to "treatment" in my area (not that they allow you anywhere near that long in reality) because of the large number of pensioners with very mild symptoms clogging up the system here.
Honest honest honest. Thank you for saying how it is rather than being super optimistic and rallying.
I sometimes feel so much worse after I’ve been on here because I feel like I’m being told off for having a rant or a moan. I’ve had my stiff upper lip mother tell me to “buck up” my whole life and it really doesn’t help.
Telling someone to calm down if they’re angry is like fuelling the fire. Telling someone to smile if they’re sad is shite. And telling me to stop feeling sorry for myself makes me feel like an even bigger loser. I just need some empathy, some understanding. I do get that on here but I also get the lectures and the judgement, which makes me retreat back into my shell.
So I’ve taken a forum break for a week and guess what? I do feel a bit better. In myself anyway. It’s down to me wether I beat myself up or tell myself off. It’s up to me wether I get up with a positive outlook or a crappy one. And that doesn’t mean I don’t appreciate every single piece of advice and help on here. It’s been so helpful.
But sometimes we don’t need to be “fixed”, we just need to be “listened to”. X
Yes indeed, lickum1966 & 💎💎1️⃣3️⃣ , being unwell IS 💩. 😔 😞
Just ask Katy ( healthunlocked.com/jia/post... , healthunlocked.com/nras/pos... ).
Many/ all of us lovingly commiserate. 🙏 🍀 🌺 🌞
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