Partners?

Do any of us really tell our partners, male or female, how we really feel. I have just told my wonderful, supportive, husband, that he has no idea how much continuous pain I am in whether it is from joints or just non-specific burning horrible pain that will not register on a register. I begin to feel a 50 year old with crap (can I say crap?) non-specific pain which makes me want to spend all day in bed in a comfy position which I could stay in for days. This ruins his weekend and i end up feeling guilty without even having his input.. Sorry for two depressing posts but this is how I feel. At the age of 20 I started on two courses of chemo and I am now past sucking up GP advice, etc. I have had enough and would quite cheerfully, well not cheerfully, as I know what a mess I would leave behind and I HATE SUICIDES as think they are selfish. But .... Got enough drugs in the house, arranged dog care (I Love my dog). Sorry. If you think that this is one of those cries for help with no reason that tie up the emergency servicses . I would not have called them. Poor hubby would have had to have dealt with them on his own. How selfish is that. I still need a light at the end of any tunnel and can't find it. Sorry to be to downcast. But. Have had enough. Of everything. If we can get men on the moon, why can't we stop normal people hurting?

16 Replies

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  • Firstly let me say as bad as it is and how you feel, don't do anything silly, there is a light at the end of the tunnel, and you will get there. We have all been in the dark place but we get out of it, more so when our meds are working properly.

    As you say when you were 20 you fought with chemo, you are now fighting again, you must be someone really special to be given two lots of illness's that you have to fight for. Most people would not be able to cope with one, you are special. You are special to your hubby, to relatives, to friends and to all of us on here.

    Each time you feel down and in your dark place, let rip on here, we will be here with walking cyber steps and sending you cyber hugs. You are not alone! Someone will always answer you.

    If you feel a day under the duvet, then have it, but continue to speak to your husband about your feelings and how painful you are. Ask for his help in your daily living, and speak to your GP about what is going on and how you feel. If you are working then ask the GP for a note to enable you to have time at home to help you.

    Take care, cyber hugs, and thank you for sending us this message. xxx

  • Oh goodness, you are so lovely - thank you so much. Goodness me, but it is still so easy to say 'enough is enough'. I have put on nearly 3 stones on steroids over the past 2 years. I look in the mirror and see this huge fat face. Big clothes. HATE IT, ABSOLUTELY HATE AND EVERYTHING THAT GOES WITH IT.

  • If steroids are the only treatment you are being offered, then shoot your rheumatologist and find another one.

    Seriously though, it does seem that in the UK you actually have to be really pushy to ask for other treatments because in a lot of cases they won't be offered. You often also have to actively ask for rheumatologist follow up - especially if you have had this disease for a long time. There are now a whole load of really good and effective drugs out there that can be used, and steroids really aren't a safe or appropriate long term option. Either ask your GP to refer you to a different rheumatologist for a second opinion on treatment, or tell your rheumatologist that you aren't prepared to put up with taking steroids long term because of the dangers and you want to know why you haven't been offered anti-tnfs or other treatments. Make sure you leave the appointment with a REAL plan for proper treatment of this disease and you could find your life changing absolutely dramatically.

  • Thanks for replying. Along with steroids I also inject 20mg MTX and take arcoxia (which is making my kidneys 'struggle'), co-codomal, amytriptyline, folic acid, 4 different BP meds, and omeprazole. After two years of MTX, I think it is now losing its potency and will definitely tell my consultant this when I see him on 5 November. I have tried cutting down the steroids (10mg down to 7.5mg) before, and it made such an awful difference I hesitate to try again.

  • So do I sweetheart.....you feel like you have lost yourself. We all on here know about that and have awful times but we HAVE to keep going. You sound so wonderful and so strong to be able to put your feelings into words. We are all here for you and understand every thing you're going through cause we are too! Please try to get to your doctor.....there is always something good around the corner. The biggest gentle hug to you .linnie x

  • Hi I read your post and feel your pain, I fight with this every day, I dont have a partner, and I do this all alone, I lost my 21 year life companion, Lucky she was my cat I raised since she was a week and a half old, she just passed in May, without her comforts so much more difficult , I too wonder whats the point, is this all there is to life if so whats the point, and I am reminded through my psychotherapist, that I am here for a reason, I am in the middle of trying to get a support group started in my town, as all the others are so far from me, If I have one thing to work on at least, If I dont think enough about me, I am doing this for others who suffer, and have no one (like us) to talk to and once doing this, I may get something back, I will keep you in my thoughts and prayers, That is Not an Option, too many left behind are devastated through selfish actions, I know this isn't easy, But the fact you wrote this is a cry for help, That is why we are here, to support each other, If u want to chat I as many others are here for you as well, Here is sending u a cyber ((HUGS)) keep in touch and have some faith xxx

    Lisa

  • Hi read your post and sending you a gentle hug, I have been where you are many times, what with one thing and another, so understand completely,

    One thing I have learnt through having this illness is no two days care the same.

    I have had RA for 20 years, and although I have had many more good days (still not totally painfee) than bad, I can fully understand where you are coming from. I too are in a dark place at the moment but one thing I have realised is I need to do what's good for me, and if having a day in bed helps then that's what I need to do. Don't feel guilty sometimes it's just what the dr ordered. Constant pain is debilitating and unless you suffer from it, you don't realise how it shadows everything we do.

    This feeling will pass and the sun will shine again, just listen to your body.

    Sending hugs to you, keeping posting, this is what these pages are all about, you are not alone.

    Take care

    Love

    Gill

  • Hi Virge. I can't say much here because I'm up high on a mountain in Italy but I spotted this when my NRAS HU email came in and wondered who it was. Saw it was you and you are obviously in meltdown so I just wanted to join in the appeals to get help wherever you can - GP, Sammaritains wherever is going to help you get on top of your pain one way or another. We all care about you and each other here so please please don't do anything awful. Lots of warmth and fresh Italian mountain air being emanated from this mountain to you. Xxxxx

  • I've been there too and doubtless may be again, so my heart goes out to you. But over the past year or so I've found pleasure in many simple things, places, trees, waterfalls, painting and drawing. Just lurking in bed just now, there's a little bush doing its autumn thing with great enthusiasm. My tai chi teacher takes a picture of something that makes him happy every day - yesterday it was a beautiful white horse in the lidl carpark. Could you start small it might help with the pain? I didnt think things would ever get better, but they can do, even just a bit. Don't despair. Xx cathie

  • im with cathie on this some day well some weeks nothing seems to go right then we have a couple of days that are well not so bad and its these that we need to make the most off.

    you can tell people how you feel like i told the wife

    but i dont think they would understand compleatly unless they could step into your body for a couple of hrs.

    you hang in their i know you can

  • Hi Virge,

    It is so good that we have this place where we can say how we feel and know that someone will understand.

    I have been where you are. I have a husband who I love dearly but have stopped telling him how I feel as he just doesn't understand. Like you I have some days where I just want to stay in bed. I have had to finish work due to RA and feel lost. I have found that keeping a journal helps, write down your innermost feelings and at a point when you are feeling slightly more positive read over it. I also try to remember that there are a lot of people worse off than me, at least I do have a family, and I can still walk. I know when you are down its hard to think of the positives but try it.

    We are all here for you,

    Lottie xx

  • Dear lovely people. I must admit I was not looking forward to reading any replies to my question but have got a wonderful surprise. Please do not think I was being selfish, I am well aware of how lucky I am and that most of you suffer more than I do. It just got on top of me yesterday, and I felt so very much better after being on here and trawling through others' blogs and questions. Thank you for your support. You have no idea how much it means to me.

    XX

  • I'm sorry for how you're feeling, and I know exactly what it's like, I've had RA since I was 16 and I'm now 43, I've had times when I'm constantly in pain when it's not controlled, spent many a time in tears, but what helps me is prayer, I'm a Christian and I know the Lord helps me through these times, people say but if He really loved you He'd heal you but these times make me closer to Him and I wouldn't miss them for the world, I'll be praying for you xx

  • Hi Virge, so glad that today has started better for you. This is a horribly lonely disease, and sometimes I wish that it showed more externally as most times we look fine so people assume it can't be that bad. And I really do recognise that feeling of guilt that gets you no matter what you do, as if you try to keep up with partner then you feel rubbish and if you do what you really want to do then they feel rubbish. But it sounds as if you've weathered tough times before, so you know you can do it. One day at a time, as they say. Or follow you dog's example and concentrate on enjoying small things. take care. Polly

  • Im just so glad you are a bit more upbeat today. I am a newbie to ra so cant really even begin to understand what you are going through with the pain but do sympathise that our other halves really are clueless to what wd go through.

    Ive found over the last few weeks being here its people in the same situation, though total strangers, understand more than our loved ones do, and that sounds crazy as we live with them every day yet will probably never meet people from here!

    I feel ive found many new understanding friends i guess i just didnt realise where there, until i needed them most.

    They are the best friends you need.

    Take care

    Xxxxx

  • I would think that 'we' cant cure RA or any other disease is because there is more money to be made in space travel.  I feel like you a lot and if I say to my Dr no I'm not ok and yes I do hurt all the time and yes I'm fed up with being like this and no I'm not going to go home and kill myself - what I want is it all to get better or just go to sleep = I'm absolutely so fed up or being like this and no one understanding just what it feels like.  I know there are people who are worse off than me but that doesn't help me.  What lifts my spirits is reading watching a good film listening to music going to the ballet and the opera - while I'm doing these things for a short time I forget those things light up my life.  Take care down despair spring is on its way and sitting in the warm sunshine is bliss xx

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