Help

[Slate56]

Hi all it’s taken me a while to write this 23 of November last year the bomb shell news you have ra after many trips to doctors so it’s been a journey since that day now on mtx hydro something and sulpha something but the pain sometimes gets to you I did quite a physical job working outside in all weather which I loved always in charge but sadly I’ve had to give up i have a job which is ok but it’s how I’m feeling that’s difficult for me everyone around me says how quiet I am now my wife and family are very supportive we used to have a really great social life but it’s all different can’t seem to join in anymore want to it’s hard to explain some nights I just lay awake for hours wondering what is happening hard to explain I look at this site every day in the hope I can find an answer it helps to see your not the only one but I feel it’s a very lonely disease we have got thanks for reading this hopefully one day someone will find a cure

[janmary]

Your story will sound familiar to so many of us - the mental adjustment to thinking of yourself in a new way is as hard as the physical side. But the ‘old’ you is still there and as your treatment starts to make a difference your outlook will hopefully brighten. Having a supportive family is a huge blessing.

And treatments are developing all the time .

Best wishes.

[JFlay]

Hi, I was diagnosed a couple of years ago. It took me well over a year to start to feel a bit better with the meds and get my head around it all 😕 I try to go with the flow now, good days or bad days.

I haven't had any counseling myself but maybe some sort of 'talking therapy' could help you? you may be able to refer yourself via your GP surgery.

[Neonkittie17 in reply to JFlay]

That’s exactly what I did too many years ago and my rheumatologist referred me to the GP for talking things over with a professional counsellor. I had been a competing athlete and so active in sports and fell walking and found it all so hard to be stopped in my tracks. The guy I saw told me it was totally normal and helped me see how my life would change but wouldn’t become awful. He said it was perfectly reasonable and understandable and it was normal to feel this. Even if we have blips and flares from time to time you get back on track and can live a very decent life and the majority of people on here do just that. Once you get the meds that work for you it’s so much better and they take time as we know. It does take about I year I think to come round from it all. I’m a huge believer in hydrotherapy and physiotherapy if people can get it at the moment.

[Ali_H]

Hi Slate56,

Please know the adjustment to the diagnosis and treatment is tricky at the best of times but you’ve had the whole pandemic thing going on at the same time so social activity has taken a double hit. Not being able to get face2face appointments is disconcerting etc so be gentle with yourself and know that we at least understand.

All the best

Ali

[sylvi]

Sorry you have had to join us darling, but we all are in your shoes. Re; your social life, how about making slight adjustments to it, instead of going out on a Saturday evening what about meeting them for lunch instead. Thats what we do when its our birthdays as i am too tired in the evenings. xxxx

[Hidden]

Hi slate totally understand everything you have said. Like you a job I loved I could no longer do . I only work 3 hours a day now and that exhausts me. Social life and hobbies gone by the wayside. Worst of all my family have had to change with me. An active family means I no longer join in so my husband has changed his life too as he refuses to leave me out. Lockdown has helped me as my family are all in the same position but things get on top of me again I will ask my gp for help.

You sound very down it might be worth having a chat with your gp. Maybe some antidepressants to tide you over and as others have said maybe some therapy. Asking for help is the hardest step. X

[Mmrr]

Welcome to the site.

RA can be a hard and lonely road, but you do adapt and find pleasure in new things, quieter activities that you might never have thought of before. Rather than walking, which I cannot do, and brewing my tea in the open air, I now drive to the country and park up. I drink tea from a flask and I can get out and diddle around. I've developed an interest in photography too and enjoy spending time taking photos. It is not perfect, but I still get the buzz of being in the great outdoors, we adapt. I'm sure you will too, given the time.

Writing your first post is a big step, so do keep in touch, let us know how you are getting on? There is always a listening ear here.

[Pognose123]

Hi, I’m just in the middle of getting my head around this very issue - diagnosed a year ago. I’m finding it truly difficult - and a big part is because my hubby’s life is now changing because of me and that’s a very hard thing to accept. I have to have total rest days in between my part time hours and a day with our new granddaughter wipes me out for about two or three days sometimes. I have found some quiet and simple mind focusing hobbies and I have to do less housework and gardening. A group like this is very good for us all. Getting to know some ‘tricks of the trade’ helps me a lot.

RA is a lonely disease, but I tried to be honest with friends, and very often they have been keen to learn about it to know how to support. I also changed jobs six months in diagnosis - and was honest in my interview. I still got the job (yay) and know I am in a place where I can be totally open about everything. At my old job I tried to soldier on and that didn’t work and I then had to keep having meetings about time off - it wasn’t a good partnership.

Being transparent about RA gives everyone around you the chance to learn and support. It’s only a silent and lonely disease if we allow it to be.

I am glad you have a supportive family, that’s a great start!

Keep talking to us - it’s a really good way to get help

[Boxerlady]

Sorry to hear that you're struggling with this but you're certainly not alone. Hopefully things will improve for you; I'm on the same triple therapy as you and I'm definitely seeing some improvements but as you'll see from the posts on here, it does take time.

Hopefully you're keeping your rheumy team updated? Mine have been great but have pointed out that they can only help me if they know what's going on and so I've learnt to contact them with any issues and I have to say that they've adjusted things every time that I've contacted them, even when I haven't waited for the full 12 weeks for medications to kick in.

I was diagnosed last Spring but my husband had a stroke 7 years ago so our lives changed considerably after that. He's doing pretty well but had to make a lot of adjustments, including changing his job, working from home and less hours. Our social life has changed, as have our holiday habits but we're very happy in our "new normal." He was lucky in that he had a good medical team (GP, speech therapist, physio and OT) and they all emphasised the importance of acknowledging the emotional effects and we had some counselling together from a stroke psychotherapist which really helped us both. Another recent positive development has been that he's recently started an online friendship with a fellow stroke victim in the same profession and they have regular Zoom chats and obviously they "get" each other. He still has days when he feels low or when fatigue hits but we deal with it together and equally he helps me when I have a rough day.

I suppose that I'm trying to say that it's natural for you to struggle and for your family to worry about you and for you to worry about them. Sometimes you just need to go with the flow but equally, it can be really helpful to get outside help whether it's just chatting to us, calling the NRAS helpline, getting some counselling or just discussing options with a GP.

[medway-lady]

The worst is behind you, RA isn't a death sentence and is controllable and doesn't impact hugely on the vast majority of people who like me achieve remission. But it takes time, it never affected my job but I was desk bound anyway. I do sympathise but realistically its very early days for you and a lot like me have had the diagnosis for many years so yes it is a shock but these days treatments are really good. I know what its like to lie awake with the "what if " going through the mind but part of that may be down to these very strange days, it may be that it's difficult for everyone regardless of medical problems or not. Please try not to worry to much and don't Dr Google to much it has some scary stuff on there but its usually the case that bad news spreads whilst good is ignored. xxx

[rab1874]

Welcome to the gang and can totally relate to what your going through I’ve had this disease about 7 years I think but had to give up my work 5 years ago as struggled for 2 years working when I wasn’t capable ,it took me a year to adjust to medical retirement as you say it can be lonely and your social life judders to a halt as this disease hits you where it hurts and everyones different it can be difficult to get the right combination treatment wise by you will get there , do what’s best for you and pace yourself,there’s always tomorrow good luck but on here you’ll get plenty off advice and love as we’re all in the same boat

[Pulfs]

Sorry that you've had to join our club.

I've had this since 1994 and had to change my school art tech job for a part-time job I local card gift shop. Then at 50 had to retire due to lots of joint problems. Since then I've learnt how to adjust to my life now it took time to accept but family were supportive. Life is good now I go out but pace myself and do what sylvi does ,lunch dates.

I talked with a therapist when 1st diagnosed and she gave me some coping ideas and how to relax and come to terms with my new way of living. If you can find someone to talk to this may help you.

Take care x

[madme1]

Someone will one day, but you are stronger than you think, Slate 56! I had to give up a job I loved and had done for 15 years or more and yes you do miss things, but you learn to do things differently. Your body is trying to cope the best it can with this and our bodies gradually learn to adapt and do things differently. Talk to those that you feel you can about how you're feeling and never be ashamed of doing this, it is nota weakness, it's a strength and a skill. Try to remember our bodies are still marvellous things that learn to cope with all the rubbish we throw at them, and good luck. You took the first step towards fighting it by coming on here!

[Michelle_x]

This sounds familiar...

R.A is hereditary in my family. I was diagnosed when i was 5 years old so I've never really known any different than the R.A pain, however my Dad was only diagnosed 8 years ago and sadly he's not really dealing with it.

I guess it's because he's lived a good life and had been able to physically do everything he wanted to, and now he's in an adjustment period. He won't talk about it though, and we've all seen a notable change in his mental health and personality Its horrible to watch a parent struggle like this.

My advice would be to talk to a GP/clinical psychologist if you can, or find a friend you trust who you can kinda teach about it so hopefully when a flare hits you have a bit of a stress outlet 👍🏻 All the best!