Giving Up

I just want to curl up & die! Since been diagnosed I have literally had no life. I've now just been medically retired from my job which I loved & had had for 13 years. I'm 44 and feel like I'm just existing. I don't go out except for appointments. I am on monthly infusions of Tocilizumab at half the usual dose due to neutropenic. I take morphine for pain along with the usual concoction to treat RA & I'm really down at the minute & wondering what's the point🤐.....

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  • Dear donnalouisec

    Sorry to hear that you are having such a tough time of things at the moment. Please do call the helpline to have a chat if you need to. They can talk through with you about what your next steps might be. The Helpline can also put you in touch with one of our volunteers with RA who is in a similar position to yourself (our peer to peer support service). You can them on 0800 298 7650 (Monday - Friday 9.30am - 4.30 pm) or email helpline@nras.org.uk

    Kind regards,

    Emma-NRAS

  • The point is you are alive, and I so sympathise really but a job does not define you as a person. I retired a couple of years ago and you'll find as one door closes another opens. RA can be depressing but, and it sounds trite but its true there are other jobs. And so don't sit in and look at walls but try to get out, do you have a friend who you can team up with to just sit and watch the world go by ? Try to get out and do you have any hobbies or interests that you can build on. Do contact and talk to the advisor as Emma the administrator suggests and you are not alone. This is a great webpage and you have a host of chums on here who do understand. x

  • I'm so sorry to hear that you feel so desperate about things. I too love my job and would be devestated if I had to leave due to this condition. However, what has been said is correct - you are more, much more than your job. It will be difficult to see right now but you have many options ahead of you and importantly, time to care for yourself and get in touch with living again.

    Equally, I'm encouraged that over time and space, new treatments and medications come to the fore and hopefully, we can benefit from them, easing our pain and improving our quality of life.

    Please take heart - you're world may feel like it's ended , but it hasn't, It's just changed direction and this may turn out better than you feel at this minute in time.

    I really do wish you well and pop in hear as you need as my experience is people on here are compassionate and knowledgable and help you feel part of a community and therefore never alone.

    Marie

  • Please keep reaching out to us in this virtual support group, as your life does matter and you have much wisdom to share with us. I know it's hard to socialize when your RA is not under control.

    i've spent alot of 2016 as a shut in. I got to the point of thinking "is this all that there is?' I hit rock bottom and this forced me to re-evaluate my life. I had to put my healthy drugfree life in the past and re invent myself. I now have new interests and hobbies. I am still learning my new physical limitations and I am all right with it. What other choice do I have? I now have more patience with everything in my life.

    I wish you well

    Sue

  • Hi Sue. Just read your excellent advice to donnalouise. My life was similar to yours before RA. As I've no doubt similar to many others. Totally drug free, I developed a massive chip on my shoulder about taking the drugs. What I didn't realise was it wasn't the drugs I hated taking, it was the CHOICE wether or not to take them was my gripe. I alongside others had no choice. Sometimes we don't have a choice.but when we don't we adapt.and when we do adapt it's one of the best feelings going.i sincerely hope you Donna get that feeling as I've no doubt you will.you never know what tomorrow has in store for you. Take care all the best. IAN.x

  • Please don't give up on yourself. Yes 44 is a young age to be medically retired however it could be a blessing in disguise.You are probably in shock and panicking. 13 years in a job - then nothing is absolutely terrifying. I felt like that when i went to work with no warning and told "we are making you redundant" as of now. I simply walked out the door petrified. I took monthly doses of Toc for 5 years until it didn't work anymore so went on to Ritux every 6 months. We all have moments of "What's the point".I am trying to get over this attitude since my brother died in August as i am the only one left now of my generation. It is very hard to keep things in perspective. Have you thought of getting all your meds reviewed, looking at other options. Also the same goes for other job options, even voluntary, maybe working using the phone or working from home. I know mobility can vary on a daily basis. Whatever you do - Giving Up is not an option. Take care. Keep in touch. I am sure you will get through this as i have to xxxx

  • Hi Thank you from the bottom of my heart for all your lovely responses & encouraging comments. I'm extremely emotional right now & have managed to get an appointment with my Rheumatologist tomorrow. I got diagnosed in 2011 & haven't had much luck with treatments so far. I've tried the TNF'S & Rituximab but they didn't work for tocilizumab is really the last option at present!I I've had a C1 C2 neck fusion due to RA & I need a c5 c6 fusion & probably a new knee. Hoping for some relief tomorrow so will let you know how I get on Thanks again for all your support sometimes it's nice just to vent. Love & best wishes Donna xx

  • You've been through a lot Donna. You have my permission to cuss with your venting too!! I do hope your rheumy can get you sorted soon.

  • Best of luck for today Donna. I hope your rhuemy can offer advice and treatment that makes a difference and it may be an idea to speak to them about your mood and how very fed up with things you are.

    Keep us posted.

    Marie

  • Hi Donnalouisec, I too had to give up my wonderful job in 1013. I was a behavioral Specialist for developmentally disabled children. I cherished my job as I loved helping these wonderful, beautiful children. I worked in this field for 25 years. I worked up until the last moment as I could hardly take a step to walk. Because of a fused knee that won't straighten up, I am now in a wheelchair. I know how you feel because I was very very depressed, angry. I'm sure my family was ready to throw me out & lock the doors. Not really but i felt like they were. I would get mad so easy. Then I'd feel guilt getting so mad at people that were only trying there best to help me. Then I'd cry. Just sit there & sob. This went on for a very long time. I was in so much physical pain all over my body. My Inflamation numbers were off the chart they were so high. I'm not really sure when I started realizing that It seemed like every time I ate certain foods that the pain was horrible. So I started trying to listen to how my body felt after eating. I started eliminating different foods & started to feel better. Everyone is different. What I can't eat, maybe someone else can. I forgot to mention that because of different health issues that I've had in the past I can not take the RA medications to help me. For the exception of one that has been around for years. It's called "Hydroxychlor". Which I have got to say has not done anything for me. I didn't start feeling better until my diet got better. But that being said, I always let my doctors know what I'm doing with my diet or if I'm wanting to try any supplements. Turmeric is a simple spice that u can get in capsule form. It's been proven to reduce inflamation. different foods do it too. Reducing the inflamation will mean less & less pain. Anyway to get back to how I feel today, I still have a good cry now & then. But I'm starting to hold my head high & im learning that there's a lot of things I can do living in this chair & with RA. I joined the YMCA. I'm now looking into joining a craft class because I enjoy making things. I go out more. I take a wheelchair bus service that comes to my house for $3.00 a ride. A service the State or government puts out for people that need it. I'm on a fixed income so I can't afford to buy my own wheelchair van. But anyway, u can get better. u will feel better once u start looking around for things u can do.The body that God made us is remarkable to be able to heal. I was reading the blogs that everyone left you. What a wonderful group of people. Your healing has started. keep writing. Rich Girl

  • I can relate to you as I have felt like you.I had to medically retire and it broke my heart.It wasn't the job I missed but being with people. I also am housebound and only see my husband and sisters and occasionally one of my children.My kids don't bother now I can't baby sit etc.I couldn't see a away out of this continued bad health which still continues to pour extra diseases at me.I feel less black now as my pain is less and hopefully yours will be too.Don't lose contact but continue to ask for more help with consultant and nurses.

    I tried 3 biologics and they didn't work but hydroxychlorine has helped most and am steroids for life.

    Try keep strong and keep in contact with us all

  • I think I know how you feel - I have lost my husband since I got RA - he said i was usless and looked ugly etc. I live miles from my grand daughter - the only family i have - i have no friends where i live and havent the energy or money to move - life is not good with RA but when the sun comes out and the flowers start to grow i do feel better. I am doing my maths gcse - it doesnt involve much physical energy and makes me feel part of life and not so useless try and find something anything to outside RA to make you feel good take care xx

  • Hi, I think we've all felt like you feel at times.

    When I was diagnosed I found everything a huge struggle. I guess for me the worse thing was not knowing what to expect.

    Initially I felt like I would never feel normal again, I hurt so much day and night, 24/7. I remember saying to my friend 'I would give anything to feel no pain just for a couple of hours'.

    Three and a half years on I am a different person again - I'm me again 😀 Yes I still have bad days and can't do everything I want in the way I want, but with some adjustments (both inside my head and physically) I now have a great life.

    I am scared about the future - I split with my partner three months ago, and have no close family - but I know I will survive. I have dropped to a four day week at work which has helped physically, but I also know that I will only be able to cope like that for a couple of years more - then what? Who knows? But I feel sure I will be OK.

    I try not to think about things I can't do, instead focusing on what I can do instead. Life still has millions of positives for me.

    Hang on in there - things WILL get better although you probably can't believe that at the moment.

    Welcome to this wonderful site 😀 I don't feel on my own anymore xx

  • Hi Donnalouise, we all know how you feel, believe me! I thought my life was over, when the RA first kicked in 4 years ago - and doubly hard as I also have a long history of depression. As everyone else has so rightly said to you, it's about adjusting, and being gentle with yourself, you ARE allowed to 'grieve' for your old life, but when at all possible, try to get out of the house. I find that just physically going outside for a stroll (walk? Don't make me laugh!) helps. Its all too easy to get very shut in, and I was guilty for a long time of expecting everyone and everything to come to me....it is hard, but worth making the effort. I hope you have supportive friends and/or family, who will help you find ways to take your mind off all the problems. I suppose its about learning to enjoy the little things, like I'm getting a lot of pleasure out of watching the birds that I feed in my front garden. Last week an engineer came to check my gas, he turned out to be a fanatical bird watcher, and we had the best conversation about birds!! He even carries a camera in his van, and when he'd finished in my house, he sat in his van trying to get a close-up of my goldfinches!!! What the neighbours thought, I can only imagine!!! Cheered me up for days, that!!

    Yes, it's rough, and yes, things will never be the same again, but don't give up. There IS light at the end of the tunnel. We're all here for you. Sending hugs, xxx

  • Hi Donna,

    Really empathise with you. This is a really tough condition and things don't stay the same. I had a really tough year last year with out of control things happening after lots of settled years (for which I'm very grateful) I feel that I am running out of options but as has been said there is always new research happening and new drugs, so there is hope. Please keep fighting but allow yourself a little time to grieve for your job. That's a hard thing to face up to but it was probably taking it's toll on your overall health and strength. I love my job and am fortunate to still be working full time with an understanding boss and colleagues. But it does take most of my energy and I sleep a lot at the weekends. I don't know what the future holds but none of us do. My Friends know that sometimes I won't be out but when I do I'll give it 100% of what I can.

    Last year every step was painful but I persevered and things are better.

    Thinking of you

    Michele

  • Hi guys quick update from rheumatologist appointment yesterday. Basically he said my gp is the person to see about depression. As for pain I am to have some pain blocker injections at my next infusion in 3 weeks. My pulse was 130 so he's ordered a 24 hour ecg.i also have to have a biopsy of a mole above my top lip as it looks inflamed, just another pit of crap to put in the pot! Still feeling down but better for speaking with you lovely bunch, so again thank you all for your help & advice xxxx

  • Hey Donna, glad you discussed depression with your consultant. Stress and anxiety can be a key triggure in inflammatory based conditions. I strongly recommend speaking to your GP about you feel. I talked to mine last year and he gave me a low level of antidepressants just to try lift my mood. I also contacted the charity called Mind. Mind offered me 18 sessions (spread over 6 months) of Cognitive Behavioural Therapy. It might be worth you exploring this as you do get some counselling time during sessions but you also learn coping strategies to deal with anxiety, sleep problems, pain, frustration etc. I really do recommend it to anyone with similar conditions if they are mentally struggling as well as physically.

    Good luck with everything and I hope that you start to feel happier soon xx

  • I think every one has had these horrors, I could no longer hold a scalpel and had to give up on my heart patients but an old friend found out and asked me to head an international heart research group. It did mean moving from my home in the uK to Qatar in the Middle East it was a huge struggle but I was able to use my expertise to inspire and train new researchers without too much physical effort. I finally retired again last year and returned to the UK and have now bought a motor cruiser which I am adapting for my increasingly limited abilities. This type of thing may not be suitable for you but there is always hope and somewhere there are good people willing to help you, you are really not alone.

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  • Im afraid i have been through the same process and when i do have to go out it is such an effort that it splats me flat for at least 2 days so i dont do it unless i really have to. My existance revolves around my laptop(rarely), my tablet (occassionaly) and my smart phone all the time and from which i am anle to operate my life. Unfortunately this is what i have left and even that existance is one of pain or take all my morphine and then the days just pass by without any recognition. Its not life its existance. I so wish for all of you further behind on this journey that it progresses no further for you and that soon more successful treatments and hopefully a cure are found.

    Blessings.

  • I think you are amazingly brave to be able to write and share with others your struggles against this cruel disease. By fighting it you are giving inspiration and strength to others. Draw comfort from the fact you are not alone and that science and medicine may yet offer us hope.

  • Awe thank you, although I don't feel amazing!I have a biopsy tomorrow of a freckle on my face (suspected skin cancer). & fingers crossed I now have my neurologist appointment for the end of March. hopefully things will start moving but I have been advised my consultant is working 19 months behind.....🙄

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