Self Loathing & Total Loss Of Identity

I admit it. I'm totally and utterly defeated. I've tried so hard to fight this, to try and still do at least some of the things I love to do, the things that make me, me, but I can't. I've put a smile on. I tell myself every single day that i'm lucky I only have the problems I do have and that things could be so much worse. I tell myself, well thank goodness I'm still drawing breath, i'm not crippled, I still have a life.

My problem is with the size of my life, which has gone from being SO big and full of possibilities, down to tiny, forcing me to do things I hate like sit around in order to rest. Previously, anything I wanted to do, I could do! The only thing I had to consider was money and time. If I could afford to do something and had the time to do it, then I could do it.

My world was as big as I wanted it to be, and now my life has shrunk. The things I can do have been so badly limited that i'm left with so few options, that I no longer feel like i'm living. Yes i'm drawing breath, but life to me is not simply about breathing, it's about doing and experiencing.

I have a hobby called LARP and I go to around 4-6 LARP events each year, or I used to. Some contain just a few hundred players, others, several thousand. The biggest event takes place over August bank holiday weekend and is something we talk about and plan for, weeks in advance. The event is as exciting to me as Christmas or going on holiday. It's a massive 5 day festival-like atmosphere where all of the players take part in a massive, complex, demanding and physical but fun game. We play a character of our choosing, we dress up and act like that character as the game unfolds, which is full of twists and very complex plot that we use our character skills to try and overcome. We all work together to combat the bad guys, and whilst dressing up and taking part in a live version of Lord Of The Rings isn't to everyones taste, i've met some truly amazing people doing it, and it's a hobby that I dearly love. The friends I have met through the game, are spread out all over the county but at least once a year, for the biggest annual event, we all get to spend precious time with each other.

I wanted to go, I booked the days off work at the start of the year, at the same time i bought my annual ticket that would allow me to play all the events (All events have a ticket price from around £45 to £60 per event and there is a very large 'back stage' team of crew that direct the players, consisting of actors who know the plot, game referees who make sure the rules are adhered to, make up artists, writers and plot team, first aiders and so on). So far this year I've managed only 1 event due to ill health, and had been unable to go to all of the other events i'd paid for. This was the biggie that I was determined to be at. I lasted less than 24 hours out of the 5 day event, I then had to drive home.

I have what is meant to be the holiday of a lifetime coming up to celebrate my 40th and my daughters 21st. I've invested a lot of money into a luxury fully catered snowboarding holiday for her and myself and we are going with 12 other friends. Usually around now, i'd be starting to get excited, but i'm filled with dread because if something doesn't change, I'll have spent all that money, to sit in the chalet, on my own, looking out at the mountains, using all my strength to resist the urge to hurl myself off the balcony.

Last night on my drive home from the event, I imagined myself over and over again just pressing my foot all the way down on the accelerator pedal and closing my eyes.

I know the signs. I'm suffering from depression, and only just managing to hold it together.

I know things could be worse, I know I should put things into perspective, but i'm fed up of feeling like i'm not allowed to mourn the loss of my life. I'm fed up of the impact this is having being casually shrugged off and i'm fed up of having to pretend that i'm strong and able to just get on with it.

I've worked so hard over the last 10 years to become a person I was happy to be, to be a person I liked and now, my entire identity has disappeared. I have no idea who I am. I just see myself as utterly useless, pointless and all the things that make me happy, all those things I would look forward to, I now no longer have. So now what?

I can not begin to explain how isolating this experience is. The stress i'm under as I continue to worry about every aspect of my health and the horrendous uncertainty of still not knowing has worn me down so much that I no longer have the ability to bounce back up again. I feel utterly, utterly powerless. I *should* have my second appointment with the Rheumy some time in November, but I won't even get a letter telling me about the appointment until 2 weeks before. What if that letter doesn't arrive? What if he is horrible and dismissive again and once again, gives me no answers, no course of treatment?

I am actually scared of what i'll do. Genuinely so.

I don't have close friends. I don't have a girlfriend I call regularly and share everything with. My partner, I feel, can only take so much and is struggling himself to come to terms with essentially becoming my carer and having to take on so much responsibility. I don't have anyone to turn to or to talk to and the way I feel, is something I remember feeling a long, long time ago, before I ended up in hospital having my stomach pumped when I had a nervous breakdown and was in the clutches of post natal depression.

Just admitting feeling this way, makes me loathe myself more because i'd worked so damned hard to leave that pathetic victim version of me behind.

I LIKE the old me just fine. This new me? The one that has to constantly make excuses and cancel plans, the one who is now unreliable after a lifetime of priding herself on her reliability. The one who loves music, but can't go to clubs or gigs or festivals any more. The woman who is so exhausted she just sits on the sofa; who is so forgetful that birthday cards get written but not posted, and is constantly forgetting things and losing personal possessions. The one who can no longer do the two hobbies (Snowboarding and LARP) that mean the world to her, that gave her a life back after many years suffering the isolation of depression - those things that saved me, I no longer have and I don't just dislike this new person. I loathe her.

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53 Replies

  • You are mourning. And I also think you're very angry about what's happened which, to my way of thinking, is slightly more promising than depression alone.

    I could probably write a short book replying to you, but it wouldn't make a whole load of difference because I reckon you're going to sort all this out yourself in time. Meanwhile, 3 things strike me:

    You don't have much of a 'support system', you've been very self-reliant and haven't needed one before. It can feel that there are never enough people to listen when these things happen to us, but there are sources of support you can access. There's a helpline on here, your GP should be able to arrange counselling. If you're really low there's the Samaritans. You absolutely deserve the time and thoughtful support such people can give you. Even if the advice you receive doesn't inspire you, just having the opportunity to talk will help.

    Secondly, the uncertainty around your diagnosis is doing your head in. Many of us have had similar experiences. If it does turn out that you have inflammatory arthritis, the treatment can achieve a better result than it's possible to imagine at this difficult point in the 'journey'. The things you love doing may be on hold for now, but don't give up on them just yet. You are not utterly powerless, though the system can be frustrating to deal with. You have the right to phone the rheumy department and tell them how much it would help simply to get a date for that rheumy appointment. Meanwhile, you could consult a private rheumatologist.

    Thirdly, you come across as a force to be reckoned with, that's why I think you'll get through this and will, one day, feel tons happier with your life again. I may be wrong, but that's the impression I'm getting so I thought I'd let you know! I've just never known anyone strong, angry and determined to let things like disease defeat them though there might be a bit of a bumpy ride ahead. The fact that you've experienced severe depression may feel like an achilles heel right now, but is it? Rather, aren't you a born survivor?

    Okay, that's the positive bit and I mean every word. Just based on how you come across of course and I'm just some woman on the internet, I don't really know you. You do mention feeling suicidal, I hear you. You must take steps to protect yourself, you must contact the professionals, starting I should think with your GP.

    As for the holiday .... hey, we've all been there, well, maybe not that luxury chalet but a similar event early in the disease .... dreading the possible contrast with how things once were. Please believe that whatever your disease turns out to be, the chances are this is the worst part of it. On that holiday, whatever you achieve, whatever you do that is fun will be an achievement AT THIS STAGE. Don't set your sights too high, look for small triumphs and in between, rest up and breathe lungfuls of mountain air. You've already achieved one wonderful thing - arranging such a holiday for your daughter as well as for you.

  • Thank you for such a detailed response. It took me months to get counselling last time I needed it so simply haven't bothered to seek it, I also can't have any more time off for even more appointments, I feel I've reached the limit of what's ok to ask of my boss, regardless of what I'm entitled to. I will try and make another appointment to see my GP and will ask if I can be referred to a councillor.

    I'll get over it, I always manage to somehow but that drive home last night was scary.

    Thank you

  • Please don't think that I'm diminishing what you're going through or the difficulties of finding the time, money or energy to get the help we need, it's all flipping hard. Replying to others is so easy whereas for you to tell us all so clearly what you're going through isn't so easy. There are no easy answers, but there are answers, one by one you will make answers. Take care.

  • its a funny old world and I feel your pain ,but you are truly blessed with many things ,most of us get to this point in time. we are fighting a hard battle .my life as also become very small and that black hole seam to be looming,but I have to count my blessings and keep moving on alone as I have lost my husband then my home I have very few friends that understand , so welcome new world new things to challenge me and I could help someone along the way we are all on this journey together .hope you find the strength you need xx

  • Sorry to hear what a hard time you've had. Makes me feel even worse for moaning and feeling this way when others such as yourself, have it even worse. I wish you all the best x

  • I have nothing really to add to Postle's post - I think she said it all from the heart. But I'll try.

    Firstly I advise you to see your GP and tell them exactly what you've said here in as direct and honest a manner as you can. If it takes a while to get an appointment then phone the NRAS helpline or the Samaritans.

    There is no shame in admitting that you feel defeated by physical illness and the uncertainty of not having a diagnosis. Ask to see a counsellor for CBT or some sort of talking therapy. If you are really frank about your suicidal thoughts they will have to help you so do be totally honest with them. This may mean taking an antidepressant but again, many of us on here do.

    Let us know that you are still drawing breath while you wait for answers. You will get through this if only for the sake of those who love you. This is the worst time, facing so much uncertainty.

    And if the diagnosis comes back again as Fibromyalgia you will at least have a name, a choice about the relevant medications (Amitriptyline has been a great drug for me for example) and you can put your very good mind to fighting or accepting the condition or the diagnosis. If the cause of your problems is autoimmune/ inflammatory arthritis then, as Postle has said, there are many very effective drugs you can try which may well get things under control. So if either of these outcomes are the worst you have to face then once you know you will, I'm sure, face them positively.

    Meanwhile try and do little things to help yourself everyday such as take a walk somewhere lovely - even if you need a stick and your partner to assist. If you can it would be worth trying something like tai chi and throw yourself into this in the way you do with your LARP. It is relatively gentle physically and has a mental discipline that you might really enjoy.

    You are good with words so you could perhaps keep a diary or blog and savour language. Or if you enjoy visual arts you could draw or make things that represent the way you feel - however dark.

    If things continue to be this awful however, the Samaritans are always there to listen and talk things through with.

    Please don't loath yourself - you look lovely and I'm sure you will come out of all this the stronger person in the end. Many of us here have been where you are, myself included, and survived to tell the tale.

    Twitchy xx

  • Thank you Twitchy. I appreciate your advice and understanding x

  • This is my world too, I worked hard through my 30's to help get on top of mental health problems I have had all my life, did a degree in my early 40's, thought finally I could have the life I always saw in others but not me, then this happens. Recently I have been feeling extra down for various reasons and got to the point where I thought I needed to seek psychiatric help for the first time in many years. I still haven't but I will if I feel I need it. Never be afraid or embarrassed to ask for help, you won't be wasting anyone's time, you won't be admitting failure. Some times you need a bit of extra help especially if, like me, you don't have a solid support network. Sometimes you have to let go of your dreams and be realistic however sad that makes you feel. Right now my main dream is to find a treatment that will make me well enough to go for walks again- maybe the next one will be it! XX

  • Hi Dogrose.

    It's interesting to hear that you feel similar to me, in relation to working through your issues and finally getting there, then being hit with this.

    My life currently feels like a game of snakes and ladders, only there are no ladders on the board, only snakes.

    Just knowing that others such as yourself can relate to how I'm feeling is tremendously comforting in a weird way.

    Look after yourself and keep monitoring how you feel. If you are in the UK remember lead times for counselling are long, so it might be worth you putting plans in motion by speaking to your GP sooner rather than later.

    If you need to talk, please feel free to inbox me and I wish you lots of love x

  • Hi Shellywelly I cannot really add to what is above but can suggest that when I hated myself between 1994 and 1998 I found a good therapist who helped me pull through. I also teach Tai chi and found something to study. OK medicine but so what it could have been flower arranging or cooking. If you live in a place with classes or clubs look up some and see if it is what you like. I guess acting so look and see if there is a choral club or theatrical club where you can find a niche. Even the chorus can be fun. I would be stuck if not studying and now I am 72 I am no better. So taken up chemistry, biology, physics and geology at a high level. No exams just for fun. Have a think and do join in with others. Hope this helps you and you can be free to email a private message if you like.

  • Super ideas. I can't abide being idle, though appreciate that some days I have no choice! I also love learning (physics, just for fun?! You are amazing!!) so learning something new is a good idea.

    Unfortunately I live in the countryside and night courses are few in choice unless I want to learn a language or how to switch a PC on :)

    I recently got my keyboard out and am considering investing time into learning to play and read music again.

    Thanks, you're a very inspiring person :)

  • sent a private message

  • Firstly can I say well done you for being able to write such a lovely piece on how you feel. Written so constructively with no repeats of subject and listing them all so descriptively.

    It shows that you are not being irrational , have identified that you are going through a process, already realise areas in which you need support and problem solving in how you can help yourself.

    Sending that letter on here is a great place to send it. Nobody will judge you for it and a great place to start to get support.

    Spotting all the signs shows you are aware of all these danger signs because you have been there before . It is when you get beyond spotting it that you are in a very bad place.

    You know yourself to go the doctors, there is no shame or stigma to how you feel. It is real and a genuine recognised state of mental well being and needs to be looked after.

    I like the suggestion of you starting a blog, it can help you and lots of other people.

    In the mean time can somebody else drive you to keep you from behind the wheel, can you use alternative transport which would give you a rest.

    You know yourself from your own experience that you can and will come through this dark phase.

    I too have been to some very dark places I would not invite anybody else too. Once I was going to drive like you described and quickly turned into a hotel , hid my car round the back so nobody could find me and checked in although I knew I could,d not afford it. I turned all the lights off in the room and cried for hours. Another occasion I drove and sat outside a mental health hospital and cried for hours hoping somebody would come out and find me. I only tell you things so that you will know that people do understand how you feel and what you are going through.

    You are doing all the right things. I could say more but it would only echo what the others have said.

    God bless

  • Thank you for sharing some of your own personal experiences. So harrowing to read :(

    I've always found writing helps me think, and brings clarity so it is brilliant to have this outlet.

    When I started to get poorly I made the decision to start a blog. It's not related to my health but having a passion project to focus on has helped give me some meaning back. In fact I was up until 4am blogging about the event I had to cut short this weekend. My blog reminds me I'm still capable of something and it gives me something to do when I'm bored stupid 'resting'.

    Thank you for your kind words and encouragement, they are greatly appreciated.


  • I was you two years ago. Now I am on a regular injection and feel like a new person. There is hope-just make sure your consultant knows Exactly what is going on. Tell him that you feel like you can't carry on and hopefully that will make him sit up and take notice. I remember saying to mine "I am a single parent and I have to work to support them and pay my mortgage, Help me make that possible"

    Good luck and prayers for your future

  • Thank you. I think revealing how low I am makes a lot of sense.

  • Hi i read your post with tears in my eyes because i feel my life has been taken away too, i sometimes feel so alone with this and that to watch others getting on with anything they want just makes me want to scream, why me? why?

    i tried to kill myself but it is not the answer ,i am now a samaritan and it was ringing and talking to them that made me get some sort of equilibrium back in my life ,but i still feel as you do every day so my heart is with you , please if you feel really low give them a try. x

  • Sorry to hear my post struck such a personal chord with you. I'm glad you are still here and that you feel like you now have some balance back. *hugs* xx

  • Hi Shelly

    I share your feelings, this disease can be so wretched and cruel but thank goodness we live in an age where we have access to some brilliant drugs. I have spent the last 14 years in and out of a wheelchair, on drugs, off drugs, working through my skeleton having joints replaced. It does change your life but it's not the end of your life. My motto has always been "adapt and overcome". You may not do things the way you used to but you will find a way through, with courage and determination. You may benefit from speaking to NRAS and ask to be put in touch with someone in your area so you have some support. I wish you all the very best, don't give up Shelly, you look a wonderful person with a lot to give to the world.

  • Your motto is amazing. Would you mind if I borrow it for myself? I've always found mantras useful and this has struck a chord with me.

    I can't begin to imagine what you've been through, but I love your positivity. Thank you for being so kind xx

  • I like mantras too Shelly, "adapt and overcome" helps me each day to keep positive.

  • Oh hun, know how you feel as suffering the same as you. Good thing is you've posted here and everyone knows how you feel as we're all in the same boat. I've had a few crying sessions lately because of the pain and I genuinely can't cope with daily tasks on times. This disease is ruining my love for horse riding. Am struggling each week in my riding lessons and am getting worse. I was nearly in tears yesterday again. My hubby is coming with me to the new NRAS group in September as he's scared stiff of how I'm feeling. I know there's people worse off than me and like you have tried to stay positive but there's only so much dtrength I have left. Have you called the NRAS helpline? Keep posting here as you're not alone. Please don't feel that you're on your own xx

  • Thank you for you comments and it's sad to hear how much of an impact this is having on your life and your love of riding. Shame we weren't couch potatoes when this hit, then we'd not have quite so much to deal with! Lol

    Good to hear that you keep on battling through and I really do hope things improve and your lessons are once again enjoyable rather than an upsetting ordeal. So glad to hear your husband is being supportive, it must be hard, feeling powerless to help you when he see's you so distressed.

    We can get through this! We can have more good days than bad!! Xx

  • I've had RA for over ten years. So I've a little insight into what you're going through, although we are all different and I'd hesitate to say I know where you are as I dont! I have days of despair and then others when I feel that life is worth living. I think your idea of keeping a blog is a good one, so you can look back on better days perhaps.

    I think that at the most difficult times I have gained strength by doing just a small thing. One worthwhile thing a day. It might be sorting things out with the GP. Getting some support. I can't really afford it but I see a private counsellor every two weeks at the moment as there are issues to do with my RA I need to work through. I couldn't wait for a GP referral as it would take too long.

    Just reading your first post, I get the impression (I'm not the only one) that you're strong and resourceful. I hope you can gather that strength to help yourself into a better place. Just one day at a time. XXC

  • Thank you Cathie. Good to hear what works for you, and also having good and bad days is common. I hope the counselling helps and you don't need too many expensive private sessions x

  • Thanks ShellyWelly. I hope that the responses to your post has made you feel that what you're going through isn't your own private desert, and that there are many of us struggling. Finding the right meds can make such a difference. I hope you get somewhere with this soon.


  • Your post has moved me to tears ShellyWelly.

    I don't usually post on here much but find reading about people's experiences very helpful.

    I needed to let you know that your powerful words explains exactly how this dreadful illness can affect you. I completely understand how you are feeling. I have had RA for 1 year now and do not know who I am or where this disease is taking me. Most of the time I try so hard to not be too self indulgent about my disease - as like you, I think of those 'much worse off".

    Every now and then however, it becomes so overwhelming I feel I can't breath.

    I cancelled my "dream' holiday this year as I knew it would be impossible for me.

    I am 43, walk like a 90 year old and feel like a complete mess.

    I am waiting to get started on the anti-tnf injections and pray that they give me my life back. I try to have faith in the fact that there are many treatment options for RA and hopefully very soon you will find the correct one for you too.

    Most of all, I hope you can find the strength from somewhere to move on through this darkness.

    Thank you for your post. Please keep writing and keep strong - you have a gift in connecting to us :-)


  • Thank you for your message and I'm so sorry to hear you had to cancel your holiday, that must have been a very upsetting decision to make :(

    Thank you for your kind words also :) I really feel like the true impact this has on the quality of people's lives is totally overlooked by the medical profession and I've been so shocked at the lack of compassion or understanding. I really had no idea about the quality of life and mental side of things that are part and parcel of the physical pain and symptoms.

    That feeling you mention, of sometimes feeling like you can not breathe I can relate to. I've not had a full blown panic attack in many years, but I often feel so overwhelmed that for a few seconds, I just cease to function and all I can feel is crushing panic.

    I am rooting for you and really do hope that the injections work for you. I've heard so many people say that the first months and early years are so tough, but once you find a combination of meds that works, you'll likely get much of your old life back.

    I'm sending you positive vibes and hoping for the best for you xx

  • I read somewhere that inflammation (which we often suffer from) is linked to depression. Somehow understanding this helps a bit.

  • I'm pretty damn sure it is linked to depression Cathie, I've heard that again and again. You are right to point it out specifically though because although I 'know' that, I still tend to blame myself when I get low. It is difficult to 'compute' that an ostensibly physical disease directly affects our emotional state, but it's another powerful argument for getting the best possible treatment as soon as possible.

  • I have just read your post and have tears falling down my cheeks. I try not to remember the old me . The one that played squash 2 or 3 times a week, had energy and didn't feel tired all the time, could make plans and carry them out. I do have friends but I don't want them to think that all I do is moan. I now don't get excited by any new medication just in case it fails and I end up feeling down. But you do need help and to let someone know how you feel.

  • So sorry to have made you feel sad my lovely. I'm done feeling sorry for myself (for now anyway), you can always have a moan here when you feel like you can't moan to anyone else xx

  • Many thanks. It's good to moan sometimes. I was sad because you were so low and I just knew how you felt we have all felt the same. Pleased you are feeling better. You can moan to me too. A cry does you good sometimes. Just remember you are not alone.

  • You are doing the right thing let it all out and believe me the new treatments will help you get your life back. 12 years of fighting RA has took it out of me mentally and physically it makes us strong but sometimes it's best to just kick back and have a rest. Do not give up and do not suffer alone because your world will be full of colour again, take care

  • Hi, I am sitting here with the tears rolling down my cheeks and I ache for you. Two years on I can't work, have found out who my true friends are and have never felt so lonely. This is a tough disease and affects our live in all aspects. I said to my hubby that I get so lonely and living so rural it isn't always easy to get out and about. I had phone therapy and it was brilliant. I now am not afraid to say to people, NO can't do that, bad day but tomorrow is a new day. You see deep inside I am still there and I have learnt to like myself again. I have no idea what my future holds but I now take each day as it comes, good or bad. Yes I cry and scream some times, but guess what we are allowed. I am truly thankful as I have a wonderful husband who is walking every step of the way with me even if he doesn't always get it or me!!!! Two fantastic kids who just love their mum. My daughter gets married this Friday and I WILL BE HITTING THE DANCE FLOOR!!! Yes I will suffer and it might take me another couple of weeks to recover but I am going to enjoy myself. I wish you all very best and it's okay to express how we are feeling and healthy. Get help as it's out there and use this wonderful site for support.Take care and be kind to yourself as you sound an amazing, honest, fun loving lady. You will get there. xx

  • Just catching up here & so sorry for the way you are at the mo Shelly. I was really trying hard to put myself in your place & had a really hard job relating to how you're feeling. I hope that this doesn't sound callous, it truly isn't meant that way but thinking back to my physical & mental reaction to diagnosis having & the responses you've received & my new future & I guess I've been either robust or numb but I've never had anything but a fight or flight reaction to my RD from the moment I was diagnosed. I admit I don't remember too much of the detail of my first appointment with my Consultant, most of it has been related back to me by my h, but what I do remember were the reassuring words & the relief I felt that something could be done to make me feel less awful. Maybe your unfortunate first appointment has had some bearing on how you are just now. Ok I have had down days, still do, but who doesn't? ..... add the meds necessary to keep me controlled into the mix & it's little wonder! I know I'm very fortunate & have reacted well to most of the meds I've had so far & do feel for those who struggle so I suppose I should count my blessings but I have no doubt that early diagnosis & treatment made a huge difference to me physically & my attitude to what amounts to a life changing condition. There was little time for me to sit & analyse what I can or can't or could or couldn't do any more & just tended to face things up front, again something you haven't been fortunate enough to have just yet without a definitive prognosis. I think I just adjusted to whatever was thrown at me because of that positive appointment so all in all maybe had you had a better first Rheumy appointment you would have coped a little better & not be up & downy. Yes, I miss some things but I've experienced them & now suppose have a been there done that kind of feeling - there are plenty of things I can still do & intend to do in the future, my newer conditions permitting lol!

    I think I'm also fortunate in that I didn't inherit my mums depressive tendencies brought on by her dads suicide, maybe because there was a cause & probably not genetic but do also think that's made me more aware to a possibility. I suppose that also has a bearing on my attitude to RD & though my dad tried to protect me from as much as he could when I was little the memories of her struggles still sit firm. I know things have advanced nowadays & mental health is far better understood with better meds available but I vowed never to allow myself to be reliant on the mind altering drugs she was prescribed (& electric shock therapy which I hope to goodness is no longer used) & rather to seek help if I ever found myself going down that slippery slope.

    I'm sure that once you're settled into your meds you'll feel somewhat differently. I appreciate it probably seems a long way off just now but in the grand scheme of things it's not really, it's this inbetween period I've little doubt isn't helping. You may hit a brick wall now & again even when the meds are found which are right for you, we all do because RD has a habit of knocking you back at times & reminding you it's still there but with a bit of luck you'll soon get settled into them & your new life & abilities. It just takes a little adjustment & tweaking here & there.

    Whatever your definitive diagnosis turns out to be please do yourself the biggest favour you can if you feel as you do now again & seek professional help. We're here to listen or even just to have a grumble to but if you ever feel at the end of your tether again I would be knocking on your GP's door quick sticks. x

  • Hey sweetie.

    I think it's the fact I still don't know what this is and still have no course of treatment that I'm feeling so powerless.

    I can't get on and adjust to it because I still don't know for certain if it is PR. My depression is fueled by the lack of power as a result of not knowing how to move forwards. When I think of my next encounter with the specialist I feel sick with worry that he'll just dismiss me again and tell me to go home.

    I refuse to take antidepressants after so many years battling to come off them. I need talking therapy, but I know from experience that my GP will want me on antidepressants....then in how ever many months time (it took me a year to see a psychologist after I attempted suicide and ended up in hospital), by the time I see someone, there will be nothing to discuss as the drugs will be working and making me emotionally numb, making talking therapy worthless as I won't be able to relate to or recall what i'm feeling now.

    I really need answers so I can adjust and move forwards.

    Thanks for the support x

  • Yes, this is exactly why I made the comparison with my own RD journey so far as they're poles apart, though I did ramble a bit (well ok a lot!). I just needed to relate my experience for you to understand why I couldn't comprehend how awfully lost you're feeling, probably in part due to this limbo situation. Without proper diagnosis & therefore an idea of what can be done to ease your problems you can't see a positive future, I totally get that, it's just I've never been there because my diagnosis & treatment was straightforward as I had classic symptoms. It'll come & you'll be able to do most if not all of the of the activites you think you won't be able to manage as you are now. Think of the wonderful paralympians we see & the challenges they've faced & overcome.

    It maybe I'm remembering wrongly but I thought you were going to question if your GP thought it better if you had a second opinion or maybe refer you to another Specialist?

    What I would do is, if you have the option, see another GP in your Practice if you feel all he'll suggest is that you go the antidepressant route. I fully understand why you don't wish to go back on them & agree talking is the better option. Have you thought about speaking to someone on the NRAS helpline? They deal with concerns like yours regularly & sure will be very helpful. The no. is 0800 298 7650 or if you prefer to contact them in writing you can get them on

    Hope you feel at least a little more like yourself today. x

  • Hello, I can really relate to your post. It is physically and emotionally tough but with the right support and treatment, things will get better. I've often felt (and said) that the psychological impact of RA/RD needs better understanding and addressing by health professionals. I'm very concerned you have to wait another 3 months to see the rheumatologist - I agree with postle about phoning the hospital and I would try and get an earlier date. I was so desperate between appointments last year that I actually went in to clinic early (ie 8.30am) (without an appointment) and asked to see my consultant urgently. She said if I'd phoned up the day before and asked for an urgent appointment it would have been better. It is definitely worth trying to bring it forward. (It meant I got started on another drug more quickly). If the rheumy dept are unhelpful for some reason, I would get your GP to put pressure on and call them too. I also agree with others about trying to get emotional support through counselling either in person or on the phone. During the day, the NRAS helpline is there. And if it gets bad at night, the Samaritans are wonderful - I've phoned them several times when things got tough, starting when I was 15, and having that kind of support made all the difference.

    The uncertainty of not having a diagnosis must be emotionally draining, combined with the physical effects. Please get in touch with your GP asap, and keep talking on here. Also, be kind to yourself and treat yourself as much as possible - you deserve it. Take care. x

  • Some tests results I had last month still haven't been received by my rheumy and I have another test in a months time. I've been told to contact them after my next test to see if the rheumy will agree to fit me in any sooner. So no real joy that route.

    I'm now off to see my GP about the depression. I've had a couple of days off work which I needed for the rest, but it's given me downtime, which I always try to avoid as if I'm not super busy, my brain starts to get dark and fills the space with worry and negative things.

    I know your right, but I find it impossible to be kind to someone I don't recognise, respect or like :(

  • Hello again, I see what you mean about the test, that's frustrating. I still wonder if there's any way they could bring the next test forward? (unless it has to be spaced out for some reason). Or if there's a way to get another expert opinion in the meantime. If it is a question of waiting to see a specialist (and I've experienced that agonising wait) it's about keeping mind, body and soul together in the meantime. Seeing the GP and talking about it on here is the first step. The main thing is you're not on your own and you will get through it. As you know just taking a step at a time and those achievements lead to more. When I was really depressed it was all-encompassing and I felt as if I was treading water all the time (but in thick treacle). A combination of factors helped me get through it but one of the main ones was having things to do to distract me and people to talk to, including friends, family, the counsellor and complete strangers. Sending you a virtual hug x

  • Hi francherry.

    The tests are scheduled by the hospital department, which i'm told is out of the control of the rheumy team. I spoke to the secretary and tests I had 4 weeks ago, they still haven't had results come through. I have another test in just over a months time (an ultrasound scan) and she said that the rheumy would not consider bringing my appointment forward until I have all the test results. 4 weeks and still not blood test results, I was told it would take 6 weeks and I thought they were being over cautious, but it would appear not!

    I saw my GP yesterday who has put me on antidepressants. I have done a lot of thinking and I can't put myself through going back on them. The side effects are likely to affect my mental functioning and ability to work even more in the short term, so i've made the decision not to take them.

    I've worked out in my head what i'm going to do if my second appointment with the rheumy in November doesn't bring me any answers. For now, all I can do is accept i've done everything that I can within the system, there is nothing else I can do now, as frustrating as that is.

    Thank you for the hug :)

  • Hello, I just had a few more ideas :) In the past I've called the Imaging department at my hospital and asked if there were any cancellations for the ultrasound. One occasion there was a cancellation 2 weeks earlier than the original appointment. It might be worth a try? I'm surprised about the blood results, I don't understand why it's taking so long. I'm not sure if anyone else has mentioned it, but PALS (Patient Advice and Liaison Service) are based in every hospital and are worth contacting - I wonder if they could help re: finding out blood results/the ultrasound. Take care.

  • Thank you francherry. Good idea, i'll try and track down the contact details for the imaging department and contact them direct to see if they have anything sooner. I don't have the faintest idea how a blood test could possibly take so long either, it's utterly ubsurd!

  • Great, good luck with it. At my hospital the blood results only take a day or two max so that does confuse me. At the very least they should explain why there is a delay (which is why I mentioned PALS). All the best, Fran

  • I've had the bloods back!! After 6 weeks and just as I feared, they are all negative apart from one slightly/mildly raised ESR and Vitamin D deficiency. So whatever it is, it's definitely seronegative but is it PR? Is it another kind of RD as i'm told there are around 100 types of arthritis.... or is it some sort of nerve damage? So, still no closer to knowing, but at least I have the results back, so that's something. I've been told they had to be sent to a specialist lab in Manchster and that's why they took so long. My regular bloods take 3 or 4 days usually.

  • Hello Shelly, good to hear you've had the results back finally. I can empathise with the wait to find out the full picture. In my case it was diagnosed after the MRI scan, X-ray and also based on symptoms, because the blood results were negative for inflammatory markers. I also had vitamin D deficiency and now take Vit D daily alongside other medication. Good luck with the tests, I know it's hard not knowing what it is, just hang in there, once this stage is over it does get better as pawsed says. Take care, Fran x

  • bloody hell - that was a bit of deja vu!

    Are you my long lost twin?

    Been there, felt that, didn't like the t shirt.

    First of all big wave and gentle hug.

    Secondly, yep RA is horrible - but, and its a big butt (and I cannot lie) things get better. Not necessarily quite the same as pre RA, but definitely an improved version of now. You have every right to be angry, depressed or just right royally peed off, bodies aren't 'supposed' to behave like this.

    I can only promise you that for me and others it got better, why should you be any different than any of the rest of us - we have up days and down days (sometimes on the same day!) I was on crutches before last christmas until the various medications I was prescribed started to balance things out a bit, and my rhuemy team have had to work hard with me being right grouch, can't say I'll be off snowboarding any time soon but I do have good friends that do LARP who have had to 'adapt' their characters to include walking staffs (one has a fractured ankle) and I had to source a reinforced breast plate for another who has a back injury and needed to hide a brace (I run my own fancy dress business so I get used to 'odd' requests).

    If you would like to talk please PM me and I will send you my email address or phone number. Remember you are not alone in this.


  • Sorry for delayed response pawsed.

    What a shame that you can relate to that :( Tough isn't it? I keep telling myself that once I have my definitive diagnosis i'll be on the road to recovery, but i've lost a full year, and that makes me really sad. Life is short and I do feel sad for loosing so much precious time with faffing around and still not knowing for sure what's going on.

    Interesting to hear that you have friends who do LARP too - most people have never heard of it and think i'm crazy!! :)

    Thank you for the offer of PMing you, I really appreciate it xx

  • I was concerned to hear that an appointment with a counsellor would take so long. Research your local IAPT service, if you have one you should be able to speak to someone in days not months. You could also contact a charity such as MIND. Sorry this is written in haste.

  • Thanks for the advice riccarton x

  • you are me and i am you well put xxx

  • I hope you are OK *hugs*

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