Wish i didnt' feel so tired why do people not undertand I can't do what I always want to?

Hi all,

what a week, a good friend had a fit, had to pick her up from hospital as someone had to take her home, am emergency contact on her list, and a friend suffers bad depression and she has been threatening to kill herslef, most of the time when I have to leave and go home. I feel for her. and I try and support when I can, just wish people would understnad that I get more tired than I used to. I saw the rhumy last week, and it didn't go well, i went in with a load of questions and I got five minutes with her, she was disinterested in the side effects of the mtx, and the problems I was having at home completing tasks. My Gp is off sick, and I can't get an appointment there aren't any. The rhumy is thinking of putting me on sulfazine next month, she said I could stop taking the mtx if i felt like it. I felt crap when I left her to be honest. I am still trying to get my head all the diagnosis, and how much it has affected me since christmas. I know in time, I will get to grips with it (no pun) intended, Just hate feeling so tired, and I really hurt today. I did have a steroid jab but I will not get a lot of help with those. On a lighter note, the book is now ready to go the the publishers, I wrote some more over the weekend, including one on raising awareness of RA. which is being included, I have found a picture for the book, signed everything off and now I wait. Had to change the title it is now called "Yes, I really do hate yo-yo's" It is about the ups and downs with a mood disorder and the ups and downs with RA too. Hang in there guys, thinking of you all and sending gentle hugs, I will not let the rhumy get me down, I support a lot of my firnds, jsut wish they supported me sometimes when I need it too. Take care all, hopefully I will get some sleep now. Paula xx

23 Replies

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  • Paula, contact your hospital and ask to see someone who can and will answer your questions. Your rheumy doesn't have much compassion for people like you with ra. Why don't you see about seeing someone else if possible. Write to pals at your hospital and get some extra support from them with your questions. Nothing is worse than someone who doesn't understand what your going through.

    Looking forward to seeing your book in print, please post when it is published and details about where we can get it and i will go and buy a copy.

    Friends who would have them, they expect so much out of you and never return the favour when you need them. I found out when i got made redundant, yes they all said we'll keep in touch and they do for a little while and they drop by the wayside.

    Never mind Paula we won't let you down on here.

    Love sylvi. xx

  • Hi Slyvi, thanks for your comments, am thinking of you, will you let you know the details when I have them. I am on facebook, and you can message me via this and I can give you details of my page, as I may have to set something up on facebook to promote the book. They use a lot of social networking sites appartenly. Thanks for the idea of PALS, i have contacted them before and they were helpful, will give that a go, thanks for the tip, take it easy slyvi, hang in there, have a rest and enjoy nics or whatever you like to watch. Take care Paula xx

  • message me with your details or i can give you mine. Let me know which you want to do. xx

  • Hi Slyvi, if can please message me and I can give you my details. Hope you haging in there. Take care Paula xx

  • Hi paula what a difficult situation with your friend, when you are tired and in pain it is very difficult to give anyone even a little support. She is very lucky to have you. This tiredness thing is awful and your rheummy visit sounded just like mine - mind you i did get off the arava and am going on to sulphas.. but she said that she is thinking of putting me back on the metx even though it was her who took me off it. Sometimes i really do not like the consultants simply because they take away all the control we have. I have always 3 weeks to wait before an appointment with the gps. I feel like making them in advance just in case something goes wrong.

    Anyway your good news is fantastic - imagine a book in print, a long term goal of mine that i don't think will ever be accomplished. So really well done, that is fantastic. I am in awe.

    Have a good day.

  • Paula, I too have a friend with depressions, relationship problems etc etc I was always there with good advice, but she never listened, it got to the point when I said to myself this is all one sided and decided to gradually let go, it depressed me so much that someone who had the capability to sort her life out didn't! I am suffering now and she knows but hasnt bothered coming to see me. I do have a few good friends and although cannot do everything they do, they text or phone and I do make an effort to meet up once a week for a pot of tea, which makes a huge difference. I am so glad you have your writing, everything I enjoyed until recently I can't do gardening, walking my six & half stone chocolate Labrador :(, my veg patch and tending to my chickens. But I am hopeful this will be temporary and maybe I will be able to do some of of those things again. Hope the sun is shining with you today :) Claire x

  • Thanks guys for all your comments, am sending you all a gentle hugs. Something the consultant said, when I said to her you don't realise how much you rely on your hands or any body part until they don't work properly, She snapped back and said I do actually! I just looked at her and thought, you may be a "speicliast" but..... I then said do you have R.A. and she said no, and I said enough said.

    Mads, don't give up, you want to do it go for it. Don't be in awe of me, I am just an ordinary person who just wants to help others, if by reeading my peotry it means somone gets help it will be worth it. Bang on the money with Gps, that is what I do too, and with the mtx, they won't put it on repeat prescription, well my surgey won't, I guess that might be policy everywhere.

    Slyvi, hang in there, you have so much on your plate, and here you are supporting everyone, you are an angel on our shoulders.

    Cliare, hope the sun shines with you today.

    I am in awe of all of you. You guys are my inspiration. Keep fighting. x

  • Hey we're all doing really well getting through this thing. Jetblack you're an inspiration keep it up please and don't let some rheumy with poor empathy/ bedside manner get you down. It is so frustrating for us all being so tied to these consultants isn't it but I think there's a lot we can do for ourselves too? Using the RA to good effect seems a bit unlikely I know but I'm finding purposes for it all the time now as an artist and even in terms of new directions with which to earn my keep. So if it becomes part of a career move - getting poems published for instance- then that's the lemonade that we make out of the lemons we get landed with! TTx

  • Hi TT, thanks for your comments, how are you? I love the picture of the owl, you are so amazing. I love the photos you put on here too. and that's a great comment with the lemonade and the lemons we get landed with. Keep up those amazing picutres, if you ever have an exhibition down south woud come along and support you. Take care, Paula x

  • hi Paula, sounds to me as if you need to go to a different Rheumy. How unsympathetic and uncaring. It is her job to tell you about RA and its effects, the drug regimes and the likely side effects. If she is not doing her job, then she is pretty useless to you! Can you see the practice nurse at your GP surgery whilst your GP is off sick? She may be able to give you some helpful advice. Don't forget the painkillers and anti inflammatories either - they can help with the pain and swelling and keep you going during the day. I am in the middle of a flare up which has lasted 4 weeks so far and without my Paracetemol and Nurofen, I would be in bed permanently! I see my rheumy next week and I know he will help immediately - I am happy with steroid injections when needed and they do work for me.

    We all get very tired with RA - this last few weeks I have been exhausted but I know it will pass eventually and I will feel better. Part of the problem is the worry over your friend. I hate to say it but threatening to kill herself is a form of emotional blackmail on you which is very unfair as you have enough to cope with. Paula, you really need to back off from supporting all those friends - it is you who needs support now. It took me ages to be able to say no to people but now I do without any twinges of conscience.

    I had a friend suffering from depression who kept leaning on me until I realised I was being used as she had no conception of how I felt and if I was feeling pretty rough and ropy, of course, she was feeling so much worse! In the end I backed off from her and now don't have that worry. It seems to have dawned on her that she has alienated the best friend she ever had but my health comes first now. Harsh as it sounds, if my friend wants to kill herself there is nothing I can do about it. It is her decision to make! I have written about her before on these blogs.

    Good news about the book. Hope all goes well with the publication. Do you know how many print runs they are going to do?

    Try to get plenty of rest, think only of yourself for a change and don't forget the paracetemol (1000mg) and Nurofen (400mg) which was recommended by my Rheumy Consultant and it does work. Best wishes. LavendarLady x

  • Hi Lavender Lady,

    Thank you for your comments, unforunately, I cant have anything with ibpfrfen in it as I have asthma, and I am on another medication which means anti inflammatories are out of the qustion. The hardest thing for me is to rest, I am trying, and I suppose I always think there are people out there worse than me so try to help them. The hardest thing is acceptance of the illness, then lifestyle changes and the rest comes together. With the book, have no idea how many print runs it goes to, but will let you know all the details when it happen. At my GP practice the practice nurse works one day a week, yes it is true, and have seen her and she said it is not my area of expertise that is what you are under a consultant for. I am going to get an appointment with the GP next week or will try too, and talk over next steps, Take care, Paula x

  • Hi Paula, yes I can understand that certain drugs will preclude you from having anti inflammatories. I also have asthma but it is mild and well under control and the Nurofen doesn't affect it thank god otherwise I don't know what I would do.

    Good luck with your GP next week. LL x

  • Thanks you for comments, hand in there and take care.

  • Hi jetblack:

    Just had my consultant visit 10 days ago, a lot like yours! Had just over 10 mins. with her and as I was leaving she was looking at her clock! No sympathy, didnt really answer my questions, except for a "yeah" and a shrug! I was quite p--ed off to be honest as its 6 months now till my next visit. I too get very very tired and luckily my family and friends understand but then its been 12 yrs I've had this so have had loads of time to coach them.

    You must stand back a bit from being there all the time for friends - sometimes they have to do it for themselves. You will not be the best person to be top of a "call list" as you never know when you'll get a flare up, so on one hand you may let someone down, unintentionally, because you physically can't do it. A friend of mine attempted suicide many years ago, I rushed over, stopped her from finishign the pills, stayed all night with her at the hospital, went through hell with her. When she recovered, she shunned me - i think because of being embarrassed? I was glad she got over it all but I felt a bit foolish and hurt.

    I believe in taking care of myself so that I am fit to help take care of others - being a bit selfish can be unselfish if you get my drift! You will get to grips with this, my love, and will learn to do what you think is best for your body. it takes time and arm yourself with as much info. as you can. As has been suggested, contact your GP or rheumynurse (by e-mail if available) and ask those questions, keep on them till they answer you. Your cons. sounds totally cold!! Try to get another one.

    Well done on the book, good luck with it - I'm taking a writing course at OU as I won vouchers writing a poem for Arthritis News mag. Really enjoying it, just doing it for fun.

    Stay positive, stick up for yourself and don't take no for an answer (or no answers).

    Lynn xx

  • Thanks lynn for your comments, at the rhumy appointment I asked about seeing the rhumy nurse to be told we have just got rid off her because we could no longer afford one. I wish I had a tape recorder of it, The whole clinic that day was chaos. I will try and get a GP appointment next week, they are like gold dust, but will try, and I have to think next steps with the consultant. I am still at the beginnnins with this illness, the acceptance is the hardest part, i think it is for friends and family too. As I will adjust so will they. But I did say no to one friend today, and said I am tired, i have to rest, so little steps. Good luck with your ou course, be intertested to see how you get on with it, and would love to see the poem for arthritis news mag. Good on you! Hang in there. Paula x

  • Paula, Bless your heart. You sound like a wonderful friend! Will your book be available in the USA? I would love a copy. I have to agree with everything that has been said. Your rheumy does not sound like she is in the right business. Can you fire her and hire another? Please keep me posted regarding your book. Take care of yourself. Gentle Hugs being sent your way. God Bless Linda

  • Hi Linda,

    Thank you for your kind comments, yes it will be, it is due to come out as an e book sometime in the next few months, and paperback in 6 - 9 months, that will be available on the publisher website chipamunka publishing. i will let you know more when i have the details of if you message me via here and i can you my facebook details and you can keep in contact via that too, hang in there gentle hugs to you. Paula x

  • Hi Paula'

    Good for you saying no. Its a tough thing to do I know. You will come to terms with it, I promise. It takes a while. Are you single? Living alone? My hubby is great, I'm lucky. Tells me to think about what I CAN do and not what I can't. Your rheumy dept. sound to be in trouble. That's a shame. Maybe your GP can put you with another hospital rheumy dept.? This website will help you as you can get lots of support and tips from all of us who know exactly how you are feeling. I will try to post my little ditty for you to read. Didnt intend on entering the competition but my better half persuaded me. Could've knocked me over with a feather when I won it! A first for me.

    Would love to read the book when it's out, so keep us posted.

    Stay positive and be patient with yourself.

    Lynn x

  • Hi Lynn, am lucky have a supportive husband, and he has been brilliant, but it is hard for him too. I would love to see your poem I thinkk that would be awesome and I would love to see it. My Rheumy centre here at both hospitals are rubbish. the whole trust is to be honest. Trying to get a gp appointment at the moment is like pulling teeth and achivement . Thanks for your comments and hang in there.

  • hi quite new here but love reading all ur blogs they give me hope on a bad day,i just had a few comments tis week that shouldn,t upset me but they did the words 'your looking well' but do they know how i fell inside,somedays in sooo much pain but have to make silly trips to benefits etc instead of resting and saving my energy or something useful!!!! end of rant xxxx

  • Hi Sheenerweener have had that comment myself and it stinks. Thinking of you and hang in there, take care, Paula

  • Hi Jetblack, I agree of course with all the others but just wanted to say what a lovely person you are with your illness still taking time to help all your friends. Big husg Axx

  • Thank you allanah, that is very sweet of you to say, hope you are not in too much pain, if you are at the moment, hang in there, take care, Paula x

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