I'm new to this; I'm 19 and was diagnosed less than a year ago.
I find having RA really hard, the pain is horrible but I have faith that in time the drugs will work. My response to having this disease however, I have less faith in.
I feel as if I am giving up things that made me who I am, and I find it so hard to talk to people and ask for help, but I think that is exactly what I need.
Can anyone help me, am I the only person that feels the way I feel, how do you cope?
Hi Izzy, I'm sorry to hear your so young and diagnosed with RA, it's a horrible thing to have, I was diagnosed about 3 years ago, the hardest thing I found not at first but several months later and that was to accept your illness, no matter what illness it is because once you learn to accept it the world is your oyster once again because by then you should know what sets different things off and if you live up to what you have learnt things then start to move on as in life, it worked for me and the rest of my illnesses around 12/13 of them lol, a year or two ago I was diagnosed with vascular dementia which I have struggled with and now I'm starting to accept it and the new friends I have through the 3 dementia support groups a week have helped me tremendously, life is for living and we all GOTTA get on with it. I hope this might help even a teeny bit, keep your chin up and there's lots and lots of lovely people on here who give the most precious advice to all of us, take care.
Phil
Hats off to you Phil you are coping with two bloody awful diseases by learning to adjust seek out support, make new friends and remain positive.
Smithfield.
Thank you for that.
Thank you Phil, you're coping tremendously with those diseases. You're attitude of taking life and living it is so refreshing to hear!
Hi izzyLane
So sorry to have to welcome you to the board. I was 29 when I became ill and it ripped my life apart.
I had just finished uni (as a slightly mature student) and had the job I had worked so hard for. I'd only been there for a year or so. And then 'it' happened. To cut a long story short I developed severe RA and have since had two new hips (you're very young for a hip replacement 🙄) and one new knee (ditto). The disease is now controlled much better thanks largely to being on Humira, but still I have bad days and good days.
How do I cope? Well, now I'm a bit older, a bit wiser and have accepted that my life will never be the same again, but it took me a good few years to get to that point. I think you have to go through a period where you are firstly in shock / denial and then you have to grieve the loss of what was, before finally accepting what is. Not everyone has the same experience, some people take it on the chin and carry on. Some don't. We are all different and react differently.
I'd never had more than a day or two off sick in my life, I'd never been depressed. I have now. I didn't realise at the time how depressed until afterwards. I was packed off for Cognitive Behavioural Thereapy for a while, until the therapist said, actually I'm not surprised you're depressed, unlucky. Kind of.
However, on a brighter note, I am now married to a woman I love, I have two beautiful, healthy children who mean the world to me, I have a 'comfortable' life (apart from the pain, but recently that has been from 6 slipped discs more than the RA), I have travelled and have nice holidays every year, etc, etc. I have also had experiences that have made me more compassionate, understanding and respectful of other people's individual situations. I have become more able to control my own weaknesses and learnt that to improve our lives takes effort and determination. In short, I am a better person than I was. I know this to be true.
It hasn't always been easy, and I'm not stupid enough to think it will be in the future. But my children are more important to me now than myself, if that makes sense. If they're OK, I'm OK.
It helps to have a good network of friends and family plus a good, multidisciplinary medical team looking after you. It helps if you look after yourself too, something I haven't always been very good at, but I am getting a lot better and am now, for example, fitter than I have been since I became ill 16 years ago. Despite not being able to walk very far due to the pain and neurological damage to my spinal cord. I can still use a cross-trainer though and still do other exercise.
You will come to terms with it, and you will still live a long, happy and rewarding life. Maybe not the one you had planned, but not many of us do to be honest.
In your lifetime there will be new treatments, better treatments, who knows maybe even a cure. It is not the end of your life, even now with the modern medicines available, and the chances are that you will go for long periods of your life and not even think about it.
Good luck on your journey, I wish I was 19 again. 😀 I'd still do everything the same as well.
Kindest regards,
Ade
Ade your a shining example to how it should be for us and i take my hat off to you.xxxxx
😊 That's very kind of you Sylvi and I thank you very much. I should probably say the standard 'my wife wouldn't always agree' - and it would be very true.
I don't mean to give the impression that I am particularly good at anything, and life is a struggle, as you know. I have done lots of things I'm not proud of and don't pretend to manage this condition better than any one else on here.
Some of the stories people have on here make you realise that, as bad as things can get at times, it isn't anywhere near as bad as it can be.
I think my wife would prefer me to be a bit more stoical, but that isn't me I'm afraid. I cry. I get moody. I lose my temper (but not in a violent way I hasten to add). I can be as horrible as anyone. Well, most.
But for people like izzyLane I passionately believe it is important to know that there is life after diagnosis.
It is horrible becoming chronically ill, particularly when so young. You feel invincible- like it always happens to other people. And then it all changes for ever. It's tough to come to terms with, but life is so much better when you do.
When you realise it isn't the end of the road, just a different path. Then you can get on with enjoying things again.
The first thing though is to get the disease under control, nobody can enjoy having a full-blown flare.
All the best Sylvi, I hope you are feeling better soon.
Ade
Ade nobody knows better than me how hard it is,not only do i have ra,i also have fibro,cfs,sjorgens,menieres and to muddy the waters even more i am now anaemic so yes i know how hard it can be.We are going to cornwall on Saturday and i am looking forward to my trip to the eden project which is a place i love very much.We don't don't every year as we wouldn't see much of a change if we did.
Crying helps well i think so as it releases the pressure of my conditions and yes there is life after ra,just not what we imagined i always thought i would be the one who would be doing the caring as my hubby is 12yrs older than me and he is 72 going on 73yrs this year and i never thought i would have to give up work because i am not well enough, but there you go,i am lucky in that i have a brilliant hubby who loves me(god knows why sometimes) and takes great care of me as well. He also cooks and cleans as well.Bless him.xxxxx
This is also really great to hear too Ade, I guess it is going to be a journey of ups and downs and it sounds like you cope amazingly well even if you do have frustrating times.
"When you realise it isn't the end of the road, just a different path" - this is something that is going to stick with me!
I wish you really well Ade, by far your honesty and support on my post has been outstanding and although I know, I;m not fixed, it really does help knowing others get frustrated and upset too but they also get the good times and live life passed the diagnosis.
Hi izzy
That's so good to hear, truly it means a lot (that it means a lot😀).
I kind of buried my head in the sand when I was diagnosed. I didn't want to hear what other people had to say about RA, because I guess, denial. I didn't want to know how bad my life might be, or how little I was going to be able to do. I was scared as hell truth be told, but not in a scary monster way, in a 'if I don't think about it it will go away' kind of way.
It didn't.
I wish now I had listened to people more that were in a similar boat, I might've realised sooner. Although it's easy to say now I'm in remission, for most of the first 8 years plus that wasn't the case, although it wasn't constantly full-on. There are times when you just have to get your head down and get on with it, because the alternative is going nuts.
I tend to 'go off the rails' a bit when disaster strikes. My parents' divorcing when I was about 15 took a while to get over too.
But funnily enough the latest setback I've had (which is a long story of slipped discs, pain, crutches and more pain) has kind of spurred me on to sort my life out, in many ways. I'd never really realised the power of positive thought, and only seeing how others live their lives have I began to understand. Some things people can't tell you - you have to learn the lesson yourself.
I've been incredibly lucky in some ways as I have been fortunate enough to get paid quite well for not working, and my wife has a very good (although very demanding) job. It's meant I could avoid the extra stress of having money worries and a difficult job. Some people want / need to work, for various reasons, even my rheumy said once that I wasn't one of them.
My children are my reason for getting up in the morning, they provide the direction that some folk get from working.
And I never get bored, there's too much to do to get bored.
The old cliche about only having one life is so true, and before you know it half of it has gone.
Pretty sure the next bit will go even quicker.
Take care izzy, and keep asking questions and updating us all with your progress. I for one will be looking out.
Ade
I hope you don't mind me replying again, you sharing your experience's with me means a lot.
I feel I bury my head in the sand a lot, I guess I feel it'll just go a way. And I always feel invincible and don't talk to anyone. Or like you've said, I'm almost frightened to hear what someone else says.
From what you're saying (and the lovely responses I have had) I've made the right choice speaking out to get some support (you've all been amazing!).
Positivity is something really need to work on, I get myself into a very dark place and hit self destruct - I'm not sure how I get better at this yet though?
Work is another concern for me; I'm so glad you're in a position that you don't have to stress or worry! My dilemma at work is I do to much, I hate my job and it makes me ill, but I feel if I quit (apart from considering money) I'm letting RA win again and take something else away from me.
Your children are a perfect motivation for you! I'm happy you have something.
I'm still working on my motivation but I guess I'll get there.
Thank you again for your kindness and it's so supportive of you to look out for me and respond.
Izzy
Don't mind at all, it's good to know someone gets something out of what you type.
Work is a tough one, I battled on for a few years after diagnosis. At the time I had a really supportive line manager; he put no extra pressure on me at all and understood when I needed to go home early or if I was off sick, which was a lot.
Then the company I worked for got taken over by a massive company and I got a new line manager. I had always found it so difficult as my job required scheduling regular meetings with clients (and colleagues), and being off sick a lot made this very difficult indeed. I put more and more pressure on myself until in the end something had to give.
I vividly remember going in to see my manager and explaining to him how I was feeling. He wasn't very supportive, basically saying to go away, find myself another position (within the company) and backfill my own position. He didn't say it like that though. I went back to my desk almost in tears, packed up a few things and walked out. I haven't been back yet, and that was about 12 years ago.
It didn't help that I am fairly certain the unrelenting stress I was under at the time at work was one of the many factors that triggered my illness in the first instance. For me I feel that a lifetime of that kind of stress would cause me to be far worse off than I am without it.
And as I'm only going to get one life, and I don't feel I owe them anything, I'd rather look after number one. But we're all different.
If you find the answer to the motivation thing could you let me know.
Talking to people does help, but I'm sorry to say that a lot of people don't actually want to listen. Your family will be important, and maybe a few close friends. But don't be too surprised if they don't 'get it'. How could they?
And that's what makes places like this so valuable. We do get it, and how.
Must go, children can be so demanding at times. 😏
Regards
Ade
I was 29 when I was diagnosed and you've got much better drug options than I had then, almost 40 years ago. There are people on this forum who have really got their lives back and do all sorts of exciting outdoor activities. I did give up some of my favourite things, like skiing and squash, but it was the fatigue that's been the biggest problem.
However I've found using alternative therapies, diet changes and pacing myself has worked pretty well and I've had a satisfying career and brought up 2 children. I'm sure it will be easier for you once the drugs are working well for you but do take control and try some other options if you haven't already!
Let us know how you get on. And do ask for help here. It's so much easier to talk to people here that understand, are there more questions you want to ask now?
Thank you for your support,
The pain and yes FATIGUE can be so frustrating when you want to do things, I find I power through these days and then feel so much worse when I should have just rested! Pacing is something I need to work on.
I'm interested in alternative therapies, but could do with some help, what works, where do I begin?
It's overwhelming the support I have had on here, I never thought I would, I'm sure I'll have so many questions that i can now put forward to you all.
Different things help different people. I've found acupuncture can help with pain and fatigue. I've tried homeopathy and found it good for acute problems but not sure about chronic ones, probably because I haven't ever found the right remedy. Am working with yet another homeopath at the moment.
I've also found cranial osteopathy helpful and see a chiropractor regularly! It's always a question of finding the right practionner for you. Go for someone recommended by someone you trust.
The chiropractor keeps me in good shape by realigning my posture so that I'm not causing more problems for myself. I also do yoga and cycle and swim.
And I've done lots of experimenting with my diet to see what suits my body best. I don't eat meat, avoid gluten and sugar and all processed foods. Easy at home, cheat when I'm eating out...but never eat meat.
Hope you find lots of things that help you!
Hi sorry your having such a bad time, I've had the disease for over 10 years now. Their have been some lows and some highs when the meds do eventually work.
Sadly the disease does change you and your out look to life. But your young you can create a new you . I have learnt to live just 1 day at a time and get through that.
Their is no standardised rules as everyone is different in response to meds and their body and how it reacts.
Asking for help is the hardest thing i struggled with its taken me 10 yrs to realise ,just simply ask and to my surprise everyone is always willing.
The hardest thing I struggle with is its a silent disease, you can't see it so family friends and people just don't understand it. As you look alright. I found the work place is the hardest place for exceptence. But you just have to keep at it and chip away at it.
Good luck with it all.
Sarah. X
If you contact the national rheumatoid arthritis society on Freephone 08002987650 they will find you a volunteer who has RA to talk to - I did it when first diagnosed and found it very helpful to talk to someone who had some insight into the disease - take care x
DArling i am so sorry that you have this horrible disease. You are not alone in feeling like you will never be the same again and sadly your right. Never mind that you have found us and we are a great group of people from all walks of life and we have a welth of knowledge and there will always be someone who can answer any questions you ask,or just to cheer you up darling. Big gentle hugs from me.xxxxx
Hi Izzy
I really feel for you. It is difficult to get your head round at first, especially as you are so young. What you need right now is positivity. Yes RD is a chronic illness, yes it does change your life, yes we would all rather not have it but it isn't a death sentence. I am pretty sure that ( I will say most to cover myself) that most people with rheumatoid disease would rather have that than be told they have terminal cancer and have only months to live. There are some amazing drugs around now for RD and your rheumatology team will be trying their best to get you pain free and living as normal a life as possible. I know it isn't enough for some people and I am not belittling that but I think being positive and determined not to let this ruin your life is a major part of your life with RD. Another point I think is vital is that you talk to others with the same condition. It is good that you have found this site. You can ask anything and we are all only too willing to help you. I am sure we have all benefitted from joining this forum and you will. It doesn't matter how many questions you ask or what about, someone will be able to help you. You are not alone. I hope to speak to you again soon. On a personal note. I have a great life. I just do some things a bit differently than I used to. You will find your own way. Don't read the negative stuff. We are all different. I wish you all the best. xx
Hi izzy sorry to hear you have been diagnosed so young, you have hit the nail on the head that the drugs will eventually reduce the disease activity and the pain will ease off. You need to work on your mood and relationships - be kind to yourself, pace yourself ie doing something you want to do but take a rest part way through, talk to your friends and relatives about how it affects you and also learn how to say NO if you want or need to. take care and rest a lot.
Thank you for your support,
It's the mood and relationships I really struggle with. My mood can be so rubbish, but equally I push everyone away or don't let them in for fear of what they will think.
I have very few people I feel I can talk to and if I do, a lot do the tough love thing which tends to put me in a viscous circle.
Do I tell people what's going on? And when they do the tough love thing and think they're helping do I accept it or should I tell them that's not what I need right now.
Learning to say no is also something I struggle with, especially at work. I'm at university but also work, and always do way to much to the point I now hate my job, and I feel ill from it. It seems sensible to quit my job (other than money) but I can't help but think that's RA winning again? Do you have any thoughts on this?
Thanks again, I hope it's ok to ask you questions?
Sorry if I'm butting in, but just a comment on the tough love thing. I think it boils down to people meaning well, but those lucky enough not to have an incurable illness that is so pervasive have little understanding of the issues we face, in my experience anyway.
I tend to get angry with people that make no effort to understand, and have had quite a few heated discussions over the years! It's fine for someone to have an opinion, but lots of people are coming from a viewpoint that 'a bit of arthritis' is what my nan had and she managed.
As you are finding out, it's not 'just a bit of arthritis'. It's a debilitating, life-long auto-immune condition that affects every single aspect of your life. Fatigue, pain, mental 'issues', systemic inflammation - the list can be long and very serious. I remember in the early days when I had rampant, uncontrolled inflammation the rheumy telling me that if I had that level of inflammation in any other (than musculoskeletal) part of my body, such as heart, lungs etc, I would probably be dead.
So when people say 'just snap out of it' or 'get on with it' it isn't always as simple as that. Thanks for the advice, but I'll decide what I can and can't do!
As for work, only you can make that call. Is the money essential? Could you get a different job you might like more? If you don't want to 'give in', that's your choice, but know that you do have a choice. If you need to reevaluate your working situation in light of your medical issues, you can do it. RA isn't winning if you are the one making the decisions. But adjusting your lifestyle to fit in with your new situation is perfectly acceptable and indeed essential.
All in my own humble opinion, of course.
This is what I believe. You may feel differently, it really is your call.
There are jobs that are enjoyable and low-stress. Hard to find maybe, particularly when you are studying and working. You do amazingly well already in my opinion.
Good luck, whatever you decide to do. You've got your entire life to work it all out, you won't do it overnight.
Regards
Ade
I too am going to "butt in" about the "tough love' comments.
Please do not allow anyone to give you "tough love" over this auto immune disease.
My advice is to ask the person, "Would you give tough love to someone dying of cancer?"
This comment will make a decent person think twice of their mistake. Forgive the person who thinks twice about their comment as everyone makes mistakes. Ignor anyone who doesn't think twice about their tough love comment. Don't waste your time on them as you don't need their negativity in your life.
Thanks Suzannedale,
I just wonder sometimes if I'm just meant to 'man up' and take what they say in their tough love. There is no doubt what they say can make sense, but at the time (particularly at the moment), I struggle to hear it and want to scream 'you don't understand'.
While I feel like this though I stay quite withdrawn and start pushing people away and completely doubting their friendship; I now feel like an inconvenience to them and that I consider them a good friend when really they don't even want to be my friend. That might me a really immature thought, and it comes from someone with very little self esteem; I don't want to lose my few friends but I feel I may do it to myself.
The question you propose I ask, may be something. I also think it could trigger a conversation.
I've been almost to scared to say to them how their 'tough love' makes me feel, and part of that is that I don't know how to put it to them, at least if i pose the question I know whose there for me.
I feel I can say this to you as you've said you have a daughter my age, I feel as if I've had to really grow up, and have conversations and make decisions I wasn't prepared to make yet. And really I'm still someone that could do with someone to hold me up.
Oh Izzy, eventhough I live in Canada, I will "hold you up" now. You will learn who you can trust, until then, I will "hold you up"..
You are so young, just starting on your adult life, then wham bam RA.
The friends you have now that truly care for you will "google RA" to find out what it's all about. If these friends choose not to educate themselves then it's their loss. Life is short. Your true friends are just around the cornner. Why hold on to posers?
You may think that their friendship means everything to you now, but, Please believe me, in 5 years will thier fake friendship matter?
RA has forced you to re-evaluate your life and friendships. RA has forced you to appreciate what is important in life. You will end up the winner. You will know who is genuine and who is a poser.
I wish you well
Sue
Not 'butting in' at all, Ade!
I always think they mean well, but particularly mentally they get frustrated and want me fixed. When really I just want them to give me a hug, I'm not sure I want them to say anything but I want their support. I worry though that this is my indecisiveness, I don't seem to know what I want myself, I don't want tough love but I don't know what I want, or more so at the moment need... This is all very confusing for me. (You and everyone else here is giving me some clarity though!).
Specifically with one or two friends, I want to find this clarity, otherwise, I'm soon going to run out of friends!
You're right that I have to make a decision about work, a few people have explained that if i do give up, it's no necessarily because RA has won, which i guess is my biggest fear. My final year of uni is coming up and I want that to be the best it cam be, and as it'll be so stressful, I need to cut out some other stresses.
Regarding another job, I had great aspirations to build a small personal training business in a local gym which is great; upshot I'm afraid is that the gym doesn't have enough space for another trainer. Me being me, I feel like a complete failure and I'm not good enough either. I guess it's just a set back but, it's put a major kink in my road (again). (A lot of negative things are going on at the moment with me so all these perhaps little things, I'm really struggling with.
I've really been able to talk and start clearing my head talking about some of these things and I'm hoping with more clarity, I can make some decisions and star living or just being happy again.
As always, thank you!!!
Izzy
Ask away thats why this is such a supportive forum, if you can manage without the job financially while you have the stresses of studying too it would help in reducing the struggle. By the time your qualified your meds will hopefully be settled and you will be more aware what your boundaries are for pushing. I eventually had to give up work completely which was hard when i had worked for 30plus years but RA hasnt won cos now i have time and energy to do other things.
Thank you!
Like I just said to Ade, I had other aspirations for a job which would have been a lot less hours and a fair bit more pay, unfortunately thats slightly on hold at the moment but with the stresses of uni, I do need to make some considerations, I stress and get very anxious anyway, so I need to cut some of the pressures around me.
It's safe to say, I'm not giving up work forever, but this job is so draining, stressful and gets me down that perhaps its time for a break.
hey I have not read any of the replies on here but just wanted to write you a quick note to say that don't let having ra defeat you. Find a good functional health dr that you can see, talk to your friends and family about how you feeling and try to start enjoying your life again. Also look at changing your diet and read books by people dr greger and go on his website.
I know RA can be a pain up the bum but I do believe that if I got through it ok and came out the other side so can you. if you ever need to talk you can always message me. I just don't have much time to talk right now because I have just got home and need to have ten min nap, clean my apartment and then I am off out again later.
Thank you for your response, especially as you seem so busy!
Somethings you all say on here and they trigger something in my head - "start enjoying life again". That has really given me some hope!
Lots of people on here and what I've read elsewhere suggest diet: is there something specific I should be doing, or is it trying new things. I'm open to trying things, I just feel a bit lost in it all.
Thanks a for the offer of messaging, I may need you at some point; likewise, if you want a chat, I enjoy conversation.
hey Izzy I will message you about the type of diet that I eat very soon. I am more than happy to help you out as best as I can.
if It helps you out at all we all go through tough times in life but it is how we get through them that counts. I firmly believe that the main reason why I got ra was because I used to live a very stressful life and now that I am living a stress free, healthier life style I do believe that this has been one of the many things that always helped my ra. Anyway I will message you osoon.
There is no doubt at all, scientifically proven beyond question. Chronic stress is very bad for you. It causes inflammation and many, many other 'bad' things.
One of the reasons so many middle-aged men have heart attacks is the fact they plod off to stressful jobs every day and because men (in particular I feel) aren't very good at talking about it they just carry on until something gives. For me it happened early and was a trigger for an underlying auto-immune problem (my dad also has auto-immune conditions, though not RA thankfully), but for others it takes time and kills them slowly.
Glad you've found a way to avoid it kalel, and that you have found a diet that gives you some relief.
And that you are enjoying your life and getting on with it.
Ade
thanks Ade but you know in regards to heart attacks not a lot of people realise this but most people start develop early signs that they could have a heart attack from a very young age.
your right though stress is a big reason why so many of us get sick.
I don't suffer any ra pain or anything like that I am just on a small amount of meds at the mo but I def want to try and be med free at some point
Yea - good friend of mine had one at 41. His dad had also had one but in his 60s, he was a smoker, big drinker, tendency to put on weight etc.
Had been showing signs for 15 years he later realised.
this is the problem we can often show signs that we are developing some sort of illness years before we actually do. I really hope that at some point in the future schools can start educating kid about how to eat and the world changes so that less people get sick.
Dunno if you have have heard of Mimi Kirk but she is in her 70's and has never got sick due to changing her diet etc.
Nice talking with you.
I'm sure your not alone in your feeling but I think I'm not defined by a disease nor will I be described as a sufferer, 'cos I'm me. Bl--dy minded, vain, spendthrift, fan of Shakespeare and lover of shoes, chocolate and Monsoon dresses. If anything its made me take stock and make the most of every day, I'm going to grow old with this condition despite it not because of it. And wearing lipstick !!! lol xxxxx
Should have added I have Celiac, Pernicious Aenmeia, Thyroid failure, and low Vit D also lifelong Riveroxaban as the RA has affected my blood but I feel great. Its taken a while nearly 2 years to get all the meds right but its been worth it. So make sure your medical professionals also do the full tests for associated conditions for auto immune conditions as sometimes its not just the RA that hurts its something else. So chin up and look forward, you know whats wrong so from today make the most of every day. Even if its a duvet day at least you can watch Tom Hidddlestone as Henry 5th if ever their is a program made to make me feel better its that one. lol xxx
It's early days for you and you are so young but trust me YOU ARE NOT ALONE, I was 28 when told i had R A with 2 boys of 7 and 5. Read up on things but always keep an open mind. Be patient, allow yourself bad days and don't get too frustrated and annoyed with yourself. Ask for help, there are ways around everything, just make adjustments.You will cope and be fine. Take care xxxx
I was diagnosed just under three years ago, and found it really hard going, really hard to accept. I think the hardest thing is knowing it will never go away.
In those three years I have had ups and downs - I had about 18 months where my RA was well controlled, I'm hoping to get there again soon.
It's the daftest things that upset me - I have always played tennis (since I was old enough to hold a racquet), knowing I will never be able to play again makes me angry, hurt and sad.
I am so stubborn and independent - I don't like asking for help! My other half doesn't understand RA at all - he thinks I ache a bit sometimes. I wish he was supportive, but in another way his ignorance makes me push myself that but harder. I have found this forum the absolutely best support. There are so many lovely people here, I don't post much but I read posts every day.
I found it quite hard to visualise what my life will be like in the future.
The biggest thing that has helped me physically and mentally is getting my cocker spaniel puppy. She gives me the incentive to keep going, get out and walk twice a day, motivates me and is so receptive if I feel rough. Lots of cuddles help enormously.
I have a busy, pressured job - I work from home from mid afternoon (which helps me, plus I get through a lot more work away from the office). I have just decided to drop one day a week too. I think after my initial stubbornness and refusal to ease up a bit I have accepted I will have to make changes, I'm trying to focus on making the most of what I have rather than feeling fed up about the things I can't do any more.
You will have ups and downs, be kind to yourself, try and be positive, life will be different but it won't be over. It will be a struggle at times, but there are so many of us in the same boat with you.
This place is fab - I'm so glad I found it. No-one understands (or can understand) how it feels unless you feel it too.
All the best to you xx
My heart goes out to you Izzylane as you are my daughters age. Too young to go through this!!!
Please know that this disease will be controlled once they find the right cocktail of drugs for you.
I know it is hard to ask for help but please do. Don't allow RA to "rob" you of who your are. RA is a dreadful disease, don't let it define you. I think of my RA as a piece of dog poop that I stepped on while walking in the park....I just can't seem to get it off my shoe yet..... But I am determined too!!
Take care
Sue
The way you are all chatting, the Internet will most definitely run out of ink, then what eh!!!, can you imagine breaking the Internet And more being allowed to to go on our favourite web site or order ya grub from telco, every little helps, so please think on, it run in ot alreadyhave fun and nighty night. And remember?.
Just to say you are not alone, I understand what you are going through. RA is a really horrible disease. I think most of us get depressed , and feel bad, when in pain. I have found getting out if you can helps, and I have also found swimming to be a help, both for the joints and it seems to de- stress the mind. I have also found cutting out gluten, dairy, meat and sugar to have helped, as does fish oil.Pretty strict I know, but it seems to lessen the pain . A good read is Patrick Holford's book "Say No To Athritis" , very comprehensive - I got it from Amazon. xx
Hi Izzy, although you were diagnosed so young, please take heart.. I was diagnosed over a year ago, I'm 52 and have always been fit and into cycling, hill-walking, swimming etc. I have tried high dose Methotrexate, which made me ill and am now on Leflunomide. I seem to be back to 80% of my old self! I can ride 20 miles on a good day and am conquering many of the highest hills in the Lakes, no problem! Yes I still have the odd bad day but these are few (I really do think exercise is a fantastic medicine!) DON'T let it beat you!!! and take heart from many of the fantastic stories and people on here.. Hope you find a good way of dealing with it...
Hi izzy , you'll get there not quickly but you will. You are so right as no one understands what you are feeling and the pain you are in and it feels relentless ! Once you have found meds that work you will feel better and try then to get back to enjoying your passions.
What are you unable to do at the moment that you'd like to? It's good to try and think of alternatives if you can as there's often some way of achieving things. I've had RA since age 13 and hate it always but it has also made me who I am today and I try and work around problems as much as I can. I'm also an OT which maybe helps , happy to offer advice if I can. X
Hi Izzy, Just seen your post, I was very moved by your age and what looks like the feelings I am sure we have all experienced, trapped in an illness which is going to transform our lives....Of course I can't speak for anyone else.....however I don't think my experience....is much different than most with RA...
Ultimately RA takes us on a journey...along a path......which is quite different from the path we thought we would take....some of us were lucky enough to have been able to move along our chosen path....before it became interrupted with illness and altered our paths forever. You are right....it does change us, I felt exactly the same as you, It took me a long time after diagnoses to come to terms, the battle to get the disease under control was not as hard as the battle to accept myself and the life I felt cheated from......That is what makes me cry......I do feel sorry for myself.....I am entitled to feel like that....We all are, I get angry at people who make remarks or compare this illness with Arthritis......they are always wanting to show you how bad their little finger is, they cannot see so cannot comprehend, exactly what this illness entails.....you say the word arthritis, they don't see fibromyalgia, they don't see the crippling effects we all eventually suffer in one way or another, they don't understand flare ups, they don't see the fight we have, they also don't see that for most of us, we just get on with it, it's the only way we get to live our lives, so they don't see who we could have or wanted to be, they don't see the life changes we make.....They don't understand the feelings to see the mountain we can't climb, I don't want to depress you, I just want you to know, I understand....
A little about me,
WHO AM I NOW.......I am.....A Professional Dancer , A Professional Dance Teacher, what are my limitations ......I can stand and teach for no longer than an hour...Can on really good day....dance approximately 3 dances half way through spaced into a three hour period...On a bad day Don't dance just sit and watch....
WHO WAS I.......I was.....A Beautiful Dancer, A Very good Dance Teacher......What were my limitations....NONE...taught for hours on end.....Danced all night....
My friends numbered too numerous to mention, I was well known and remembered for my dancing wherever I went, they were all privileged to know and see me prior to illness, they all became my second battle, post diagnoses, I couldn't cope with the sympathy, their looks of disbelief and gasps when I could no longer walk. When I finally accepted the new me, It took everyone else longer to accept and their sympathy in the end dragged me down.....So the illness has a dominoe effect on you and those around........ Izzy you are not alone. If you need someone to talk to we are here..xx
Izzy! So sorry to hear you're feeling this way. By the mass of responses you'll see you aren't alone in how you feel.
I've definitely been there, this disease started for me when I was 25/26 and I'm 29 now. It's like a bulldozer over your life isn't it?
I wrote a post on my loss of self identity due to the illness last year, giving things up that you love is super hard. I do want to give you some encouragement though. I went from gym 5 times a week, running, going on nights out, working full time and living life to the full to basically sitting in my house unable to walk and feeling c**p. Now I am on Humira and literally life has returned back to normal.
I never wanted to accept that I would have to have anything but a full life again which is what got me so down. I do once again have my life back, I don't think I'll be running any marathons in the future but never say never! Plus who wants to run when it ruins joints anyways?
Being young and having inflammatory arthritis (I'm now rediagnosed with psoriatic arthritis) really sucks because it's like the prime of your life.
I coped by using this forum and the strength people gave me on here was tremendous. I coped by researching all the drugs I could and all the lifestyle changes I could. I coped by crying if I needed to, laughing as much as possible and trying to surround myself with friends and family.
It's tough right now but life really will get better, and your new normal may actually be better than the old. Mine is! I appreciate my body so much more now!
As soon as a drug doesn't work for you tell your rheumatologist and GP. Keep on at them, you don't have to suffer!
Take care
T xx
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