Grin and bear it is that my only choice?

Having been diagnosed with RA last year I am currently taking 12.5mg mexathorate and 10mg weekly and just 2mg prednisolone daily. Now that the meds have bedded in I do feel so much better than this time last year but I would love to wake up in the morning knowing that I will have no aches and pains for at least a day!! My left thumb has now decided to play up so its off to Occupational health for some tips and strappings always found physio a complete waste of time!. My point is that I do appear to be getting very depressed about everyday life and just end up grinning and bearing it which I am sure at 53 cannot be the answer. I am finding it diffuicult to go to work on a daily basis my employers does not care about RA and just think I am making it up! I get anxious over silly things last year I tried CBT at the request of my doctor but really after three sessions what is that all about....... am I the only one who feels like this??? what does the future hold or is it just grin and bear it........

19 Replies

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  • You are not alone. Most days I grin and bear it. I drive a bus for a living and sometimes I feel like screaming, but you have to smile and pretend that RA doesn't exist. My hubby is supportive; my brother, who works in the same garage, doesn't really understand and thinks that I am a drama queen. It is only this site that keeps me sane.

  • Thanks for your comments and I agree that having found this site its always good to talk :)

  • Hi Bellydot,

    I'm really sorry to hear you are feeling this way.

    Your post gave me some solace in knowing that I'm not the only one to feel this way! After being diagnosed now for almost three years with meds and general side effects of the disease I feel like life is passing me by and I'm just trudging through each day so I can really empathise.

    I have been trying this new year to start to make some changes and have reduced my working hours which is better but I think something more drastic needs doing.

    Unfortunately I'm quite a cautious person so this is quite hard for me. I am really determined though to try and reclaim some elements of my old life - at 37 I really don't think this should be all it is. There are many encouraging stories from others on this site so hopefully these will help to encourage you.

    Probably I've not helped much but please know that some do understand and can really empathise with you right now.

    Very best wishes, V

  • Thanks V for your comments you have helped me in knowing that I am not the only one who has to deal with these day to day issues and it really helps talking about it :)

  • My first thought would be that a chat with your rheumy nurse regarding your pain and meds is needed as there are other med options although depending on when you were diagnosed it does take time (up to 3 months) for the meds to work. Life can be difficult and different with RD and it does feel like being on a roller coaster at times but getting the right balance of meds can improve things physically which in turn helps mentally. Farm

  • Hi farm I have found my rhemy nurse very good to talk to the problem is getting hold of her. Even though she tells me to email her/call her if I am just feeling down I always think her time should be taken up with someone who probably needs her more!! Thats probably my low self esteem which has a habit of kicking in from time to time. Now that I have found this site and how quick people have replied to me I am feel so much better knowing there are lots of people like me around and talking is such a good medication :)

  • But you are important as well. Pain and depression go hand in hand. ((())) Farm

  • I'd say that it's still early days for you so with a fair wind, a helpful rheumy and a bit of focus you should be able to get beyond this stage. After I was first diagnosed I was so pleased that the MTX was calming things down that I just accepted where I was. After all, I was miles better than I had been.

    But like you after a while I started wondering whether this was as good as it gets. So I started nagging the rheumy about wanting a better quality of life, and asking about what else she could do, or I could do. To cut long story short I'm now on 3 DMARDs (but no steroids), plus being several stones lighter, and I exercise every day and eat a healthy diet. And I'm 95% fine.....maybe a couple of days a month I need a bit of extra pain relief, and the first half hour in the morning is a bit achy, but that's it.

    It took quite awhile to get here, and making some big changes in the way I lived my life wasn't all plain sailing. But I think the important thing is not to give up, and to keep looking forward and believing that you can improve. Do you have a dream that you want to fulfil? I found having something positive to aim for gave me the willpower to push the rheumy and slowly make changes to help me get there.

  • Thank you for your comments I agree a positive attitude really helps its just sometimes its hard to stay focused. I am now thinking that not only do i need to plan things but I need to make sure they are carried out otherwise what is the point :)

  • I too just "grin and bare it" . It sucks doesn't it?

  • You know I am 35 and was diagnosed 33 1/2 years ago and keep asking the same question. I don't think anyone should have to grin and bear it and pretend their pain doesn't exist. It's real physical and mental pain and it should be acknowledged not ignored. But when I was struggling with my anxiety and depression one piece of advice stuck with me.

    Happiness does not mean a lack of suffering. To achieve happiness whilst suffering you must create a life worth living.

    So for me that means; acknowledging my pain and restriction and not pretending it doesn't exist but simultaneously making the effort to do thinks I like to do even when I am really bad; going to see comedy's and gigs, watching comedy box sets at home. Devouring books on my kindle (heck you can do that even if you can't get out of bed).

    Getting a kindly loved one or friend to give you a super gentle massage (careful with aromatherapy oils; I was advised to stick with lavender and chamomile only for RA because they are less likely to cause a reaction), cuddle your pets, listen to music.

    And don't iron clothes, life is too short. School or Work Shirts yes, everything else forget it.

    CBT has had some great results but it's not for everyone. I wasn't too impressed either. Perhaps you could ask your GP if they offer counselling instead of CBT. Or you can call the Samaritans. There is a misconception that they are just there to help people who are suicidal but that's not true. They are there for anyone in distress who needs to talk.

    As for your employer, they are legally obliged not to discriminate against you. Even if you have worked there for less than two years you are protected from discrimination by the Equality Act 2010. Put a letter to them in writing to confirm your condition, date it, send it recorded delivery and keep a copy. Do you have a local citizens advice bureau or similar? They will be able to advise you on your employment rights. Or try the ACAS website for information.

    Please don't feel bad for feeling bad. Let yourself feel justifiably angry and afraid as anyone would be. But try and seek out lots of happy experiences and build some happy memories of 2016 as well. Good luck x

  • OMG Pinksugarmouse!! I love your attitude. Thanks for the wake up call.

  • What a fabulous outlook you have if onlu you could bottle it and we could all share it!!!

    I only work in a very small office and my boss is one of those who is never ill! but on my calculations she has had more time off work than me over the last 2/3 years!!!

    I have made notes to ensure that if anything does come up at work I can fully defend myself :)

    Maybe this is the time to review what I do for a living and look to reduce my hours and get out there and enjoy life even with the everyday aches and pains!

    Thanks again

  • I did get a bit maudlin a few weeks ago and couldn't shake it off, I felt very sad and wondering what the future held with all these aches and pains - I was reading/hearing about all the people (celebrities) dying, I know they were actors or people on TV and music industry but I also heard about people dying who I know personally. I think the main thing that concerned me was they were all around my age (65) and I consider myself as still young at heart, still working 3 full days a week, active with family and a good social life. The conclusion was that whether we have RA or not or are blessed with super skills, or any walk of life, we can be taken at any time, so just live each day as it comes. Just remember that as you are taking your next breath someone somewhere is taking their last.

  • Thank you so much for your comments have made me really think this morning :)

  • My vision is blurred this morning (Sjorgren's) , so at first I read it as Gin and Beer rather Grin and Bear! Well, that's one solution, I suppose, but not together and not to excess!

    I'm 71 so you could say, and plenty do, " what can you expect at your age". Well, I didn't expect to age 15 years in 2 years. I was fit and youthful before this happened. Now I'm old and feel that I'm running out of time. I have lost a lot of muscle, and have gained two stone in fat. But if this beast had struck when I was your age, before the biologics were available, I would be in a wheelchair, or maybe even dead, so I'm grateful it waited as long as it did.

    It may sound a bit cheesy, but as well as the very helpful suggestions given by Pinksugarmouse above, you might try writing each evening 5 positive things that you are grateful for. It really helps me when i'm low. I also listen to the Dalai Lama singing his healing chant. I posted the link once before, but can't include it here without losing all that I've just written on my iPad. But you can find it on YouTube.

    This forum is wonderful for support -receiving and giving.

    Take care and be kind to yourself.

    J X

  • Jora if all people can come out with is "what do you expect at your age?" when you are in pain and then they are clearly very ignorant people. Your pain and struggles aren't any less valid because you are older.

  • hopefully things will get better ifelt the same but now i only take 20 mtx inj once a week had some terrible times early on but now dont feel depressed & not much pain taken a while dont give in to it

  • I have dealt with 4 types of arthritis for 40 years by taking drugs. U must embrace the drugs and be thankful they keep u functional. Be sure you have a very good Rheumatologist who listens to you. Be certai. You pY attention to hour body and give him feedback. Sorry to say there is no cure yet. I have found that the biologics provide the most relief

    You need to mention your depression to hour doctor. Depression is normal and can be dealt with and is quite common with chronic diseases. Find an activity that makes you happy and live in the moment. The journey is difficult, but worthy.

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