describe it/explain it

no i can't.when friends/doctors ask me that it frustrates me as i can't not because i'm illiterate because it confuses me what's happening to my own it black or white?i wish it were that can u say in one sentence i get eletric shock pains in my fingers or other parts of my body but sometimes it's like putting hands in nettles and sometimes they throb and/or heat up and so sensitive sometimes and i get muscle spasms or twitches or dead arm feeling it sounds surreal to me and i can't get to grips with it and i find that i can't talk to anyone because they'll think i'm nuts and sometimes i feel i am.i feel ready to explode with everyone,work because i've tried to explain and they don't give a f- -k or my kids; as long as i'm here to watch kids or do things for them they shrug it off.maybe it's because i can't say blah blah this is what's wrong with me.i know most people on here have been diagnosed but how did you all cope before that.were you full of frustration,anger,confusion.this site has been a god send to me in many ways and i know i'm not the only undiagnosed person on here but please i need help to deal with if anyone out there can remember when they were in limbo about what was happening to them mentally/emotionally can you please share x

31 Replies

  • Regardless of whether u have been diagnosed makes no difference, it's still hard 2 explain. I have felt exactly the same way.

    For example, 2 years ago I went in2 a massive flare (even though my blood results contradicted this but hey, I've had lupus long enough 2 know when I'm flaring!) & started having CNS symptoms. I kept my mouth shut 4 ages cos I really did think I'd gone mental & that if I said anything I'd end up being locked up. One day I went 2 c me GP 4 something totally different & just blurted everything out about how my moods were veering widly from thinking I actually was Superwoman & the most special thing in the world 1 minute, 2 wanting 2 just knife some1 4 looking at me the wrong way the next. How I was hearing voices telling me 2 do things & seeing people in my garden waving at me, spiders crawling all over my body, being absolutely petrified of being outside as every1 was laughing at me & talking about me (they weren't obviously) & the fact that I didn't feel safe crossing the roads as my speed/distance judgement was non-existent, the list goes on. I seriously thought he was gonna ring social there & then & have me sectioned. He sent me 2 a psych, who in turn sent me 2 neuro. After various tests, I was basically told that although I didn't have CNS lupus (the tests all came back 'satisfactory' & not showing any problems) the lupus had affected my CNS & had also caused me 2 go in2 acute psychosis.

    Yes, it was scary as Hell, especially when nobody understands & basically thinks u're some neurotic old bird going off on 1 cos she's got PMT or something.

    I think my other half finally sat up & took notice when I just totally went off on 1 4 no reason. Because I couldn't get the words from my head 2 my mouth I showed him a blog I had been keeping about all my thoughts & feeling etc which he read. He gets it now, he understands how low I was & how close 2 the edge I was. There was all sorts of stuff, ok, it didn't make a lot of sense but basically saying that I went 2 sleep every night praying that I wouldn't wake up in the morning as the pain, mentally, physically & emotionally had got 2 much 4 me 2 cope with & I couldn't face going on 'existing' rather than 'living'. I just felt on auto-pilot & the only reason I hadn't topped myself was the fact that I was worried about how it would affect the person who found my body. I had even gone in2 great detail about my method of suicide.

    It's so hard 2 explain 2 people how much this illness can mess with u & I find men (sorry 2 any male lupoids!) r the worst 1's when it comes 2 trying 2 explain about feelings & emotions, they just don't wanna hear it.

    All I can say is just keep pushing honey, make a list of all the crap u have going on & keep presenting it 2 all the Docs u c. Some1 WILL listen & take notice of u eventually or refer u 2 some1 who can make sense of everything. This will get better, u just have 2 MAKE people listen, whether they want 2 or not. Good luck chicken x

  • Bless you Sher for your honestly, truly. I too have had thoughts this past year that everybody would be better off without me (totally not like me, but at times the pain has been hard to stand and I couldn't understand what was going on with my body) and I felt like I was changing as a person. This illness It knocks you of your confidence, you doubt yourself constantly and it's so hard to keep your thoughts on the right tracks sometimes. I think when I actually said at the rheumy appointment two weeks ago and at the GP surgery that I was not coping it was a first for me. Your advice helped me Sher to keep searching for the answers and I hope it helps letslaugh too.

  • im so sorry sher i feel pathetic for moaning after reading this.i know what im going through is a walk in the park compared to a lot of people on here,i can deal with anything life throws at me(just hope lupus not 1)in circumstances but illness is entirely different and the hardest thing for to explain to people because it's about me,not making sense am i.sorry just having a self pity moment or guilt 1 as lost it with my son and daughter today x

  • Don't apologise my lovely, I'm back 2 being a feisty little bugger now ;0) Basically, u'd think that even a 'veteran' lupoid (such as myself who has had lupus etc 4 almost 19 years) would b pretty much aware of what it can bring my way & how 2 deal with things. That is the thing honey, we all have different tolerance & coping levels & it's hard 4 all of us at times & getting a definite diagnosis is half the battle, once u have that, u know what u're dealing with so can work out a plan of action. It's hard, as a woman, 2 admit when we're struggling, as usually, we just bite our tongues & get on with it, but sometimes u need 2 speak out, have a rant, feel sorry 4 u'reself, feel angry, cry, whatever. And u make PERFECT sense love. Don't feel guilty 4 having a go at u're kids, u're only human & it's frustrating when they're bickering or moaning at something trivial (whatever it was that caused u 2 kick off) when u feel like s**** & it seems like nobody gives a damn or is taking u seriously. U'll get there my lovely, big hugs x

  • Thank you sher x

  • I couldn't really write anything else earlier as don't really know what to say except 19 years a long sentence very long and I will get there it just might make easier with other friends/family being a little more understanding x

  • & u will get there my lovely. Sometimes people r either too selfish 2 c what's going on around them or 2 afraid 2 acknowledge it. What about writing a letter about how u feel or printing off some info about Lupus & leave it lying around? I'm lucky that my kids (who r 8 & 10) have never known any different. They know that sometimes I have really bad days & although they still can't a bit miffed that I can't spend any time with them some days, they accept it. I felt guilty about it 4 a long time but at the end of the day there's nothing that I can do about it so I have learnt 2 accept it & make the best of my 'normal' days x

  • Hi, don't feel sorry for how you feel as this is real and you are struggling with this. At each stage of this illness it feels like we are constantly learning, pre diagnosis, after diagnosis and probably all through the illness too. For the people I was confident in explaining to I would say that I had an immune problem and that caused all sorts of difficulty as my body is attacking itself. I would say the worst symptom initially was fatigue, joint pain/stiffness of joints inflamation and muscle weakness. I now say it is an unpredictable illness with no two days being the same.

    It's so hard to explain and I just hope that I keep learning from the likes of Sher and others on here who have had this illness such a long time. Thinking of you xx

  • Thank you mstr every one on here is great and gonna stop moan in now as sick of listening to myself x

  • Hiya

    Everybody has given you some great advice, i just wanted to say that it is ok to voice (your not moaning) about the way you feel. What you are going through is not easy at all and is difficult for people even the doctors to understand how you feel.

    I am actually a really positive person but i have my bad days when i am like "What the hell is this?" "It's too much for my to deal with!" and on those days, i tell the 2 fake teenagers in my house (ages 4 and 11) that they can play on their computers or with toys all day because i am not having a good day and it wont kill them. On those days i just do nothing and allow myself to feel whatever it is that i feel. Then, i make a plan and keep it moving.

    What you are going through is not a walk in the park compared to anyone, it is your own pain and it is ok to feel what you feel. I think Sher78 said, keep a journal and write down how it is affecting your body and how you feel mentally. So many symptoms affect me that i sometimes forget by the time i have to go and see the Rheumy and this has helped me to make sure that they are getting a full picture of me.

    There is always support and understanding on

    Love and hugs


  • Thank you leisha and I have been writing it down and even reading it back it still sounds surreal if only it were'nt so erratic don't know if that right word(always changing)maybe others would be more acceptable to it.don't know if I worded that correctly.I find it hard to believe so how can I expect others to x

  • Good God, if u wanna c erratic, u should listen 2 a conversation I have with some1; I can b talking 2 some1 about something such as the kids 4 example, then just randomly go off on a tangent about something really odd like painting my toenails! The looks of 'What the Hell is she on?' I get r hilarious! Luckily, most people know what I'm like by now & luckily 4 me, I've reached the stage in my life where I really truly & honestly don't give a chuff what people think of me anyway ;-) At the end of the day, my kids & other half love & accept me so bollocks if any1 thinks I'm some 'mad old bird'. Just write it all down honey, u'll b surprised at how much sense it actually makes 2 certain people x

  • They call me scatty bird at work just recently of course and my friend who understands and been/going through same sort of thing has noticed i've now got stutter/stammer and mix words up a calling has never bothered me.stick and stones will break my bones but names can never hurt me x

  • Exactly! Especially when u have an army of fellow Lupoids behind ya ;) x

  • HiYa. FEllow awaiting full diagnosis, they wittled it down to knowing its autoimmune connective tissue and put me on a huge cocktail or tablets so I know How you feel. THe best way I stay sane is to think of things that make me happy, on bad days I put my headphones in and block out the world. YOu can't let this Horrible disease get hold of You or it will drag you into dispare before you know it happened! Write to all of us on here and have a rant were all here to support and advise, maybe could even help you write down a letter to your doctors so you can word What your going through? I find drawing theraputic :) don't hold your feelings in tho hun it doesn't help xxx

  • Thank you loubielou doctors not really the problem they get the message loud n clear now it's the people closet to me for some strange reason that I have problems with telling.doc has told he thinks it's autoimmune but leaving it to experts to determine which 1.think my problem is people used to me just getting on with things so that's what I'm trying to do just want to shout at them enough is enough if you don't want to listen then f- -k off sorry

  • Lupus UK has lots of leaflets/dvd's that the family can look at if they don;t understand. For me I have found that not everyone will understand or want to learn all about the condition. For the family members that do want to know more it helps and they are then able to educate the others who might not have had the opportunity to learn about the condition. Roll on when there is even more lupus awareness out there too. xx

  • Yes your right their should be more awer

  • Awareness thing is I can't give my family any imor

  • Information as I haven't,t been diagnosed.sorry bout messaging on tablet as computer play in up x

  • Don't be Sorry. You have the right to be mad. Your main concern from now on is to be healthy and happy. If they don't want to help or listen then don't be doing things for them, its not selfish to concentrate on your health. It's not ok for YOU right now Coz you've just been hit with this bombshell and your head is spinning, I was there 6 months ago, all I did was cry and have ppl Tell me its ok, well its not ok its bloody Horrible, but I can Tell you that in a few months you will get to grips with it and although it won't be ok it will be better. XXx

  • Your absolutely right people should know me by now ,you don't but you've got it exactly right I will get to grips with whatever it is I will fight all the way.try loubie Lou x

  • Big hugs :) if you need a chat msg me sounds like were at similar stages :) Xx chin up Xx

  • When people are healthy, illness is something that happens to someone else. When people become ill, they become more empathic towards other sufferers. Which is why we all understand each other on this forum but our families, friends or colleague pies or even medical personnel have trouble with it. That doesn't make them bad or unfeeling people, just healthy. You can get frustrated, upset, angry etc for being taken for granted but that will not make them understand quicker. You were forced to deal with your illness quickly because you had to. Your loved ones or your friends will take a while longer to get there, if at all.

    But I do understand what you're going through, it took me 2 years to get to a diagnosis and in that time I used to tell everyone about my symptoms and what I was going through, despite many not wanting to hear all that detail, poor them! The things did not improve once I got the diagnosis but few months down the line I am now far more economical with the details, I feel that this illness is personal to me and I choose who I want to share it with. I'm very much like mstr above, say just that it is an unpredictable, awful illness and that I take one day at a time.

    I hope you'll get to find out soon what the problem is and that you will find some sort of understanding from your friends and family soon.

  • Your right I've been guilty myself not that I've never listened to people but maybe did half heartedily.just getting taste of own medicine x

  • Wow, Sher that's so honest and inspiring that you have that strength. This site is a god send to me and I enjoy being surround (virtually) with people who are similar, but you may notice I do not post often even though I check the site everyday and its probably because I find it hard talking about Lupus and myself. I speak to friends and family but I do not think anything I say encompasses at all what I am really feeling emotionally or physically.

    I'm still coping if I am honest. I was only diagnosed in november 2011 and 2012 was such a hard year for me. I was lonely psychically and mentally too. All my friends were away and I felt so isolated from reality and life. To be honest I do not know what I did with my days, it was a hard time and it often brings a tear to my eye when I think about it and moreso if I am talking about it. I was almost blubbing when I was talking with my disability officier at university because whilst he was probably trying to look sympathetic, all I could think was that he was pitying me.

    It took me a long time to get a diagnosis and I was going through exams when I was fainting and being sensitive to the light. I was so afraid and its made me a more anxious person and less confident person in general. The last couple of days I've just felt unmotivated with my life. Symptoms wise I feel alright, but I am having trouble sleeping mainly because my friends do not understand. So I kind of get where you are coming from. My friends/ family don't ask me to do things when I can't but I still get the feeling that thre is something missing.

  • Thanks Flippityfish. It's a bloody difficult thing 2 go thru. I lost a lot of my friends, some that I had been friends with since childhood. It's a very lonely & isolating illness. I think being honest with ourselves is a big thing & learning 2 come 2 terms with lupus & accepting it is very hard & a massive hurdle.

    I would seriously encourage any1 2 keep a diary or personal blog (up 2 u if u ever let any1 c it) where u get all u're thought & feeling down. I have found it a massive help, just getting it all out of my head makes things seem so much better & it's good 2 look back & c how far I've come when I don't feel like fighting any more.

    Any1 can just lie down & admit defeat but every single 1 of us on here is made of stronger stuff, if we weren't we wouldn't bother sharing with each other, it takes great courage & strength 4 all of us 2 open up & say how we're feeling whether it's physically, emotionally or mentally, especially when we have Docs, Rheumys, Neuros, family members & friends that think we're raving hypo's & making stuff up or exaggerating half the time!

    U WILL get there, it just may take some time & don't ever feel alone, there's always some1 on here who u can talk 2 & won't judge. Big hugs x

  • Thank you flippityfish I know something else now I.

  • I don't want people to pity me either god no I couldn't handle that.I just want them to listen when I say I'm havin g a bad day I'm not saying it for no reason or for sympathy and even tho I don't look different to them I am having a bad f- - k king day just believe me.

  • Wow this entire blog seems to be exactly how I am feeling. Flippityfish I am the same as you, diagnosed nov2011 and 2012 was just a blur. I had the most horrendous red rash across my face - I looked like I was an alcholic. I also had to wear a hat and gloves all the time and people looked at me like I was insane. So like others I belived they were all laughing at me. I was so sick and stayed at home most of the time. I am photosensitive so like you I became afraid to go outside. Then 2011 christmas I became unrealitically afraid of the snow and ice. I was adamant I would fall and I actually had a panic attack at the thought of having to walk on it.

    I am not much better this year but I have not had to go out too much. I am off sick and I have a meeting on Thursday with my work to discuss whether they should keep my job or not. So it is a very stressful time. Like Sher78 I was admitted to hospital originally with pneumonia and I had an unexplained fever. they poked and prodded and even had a nuclear test done and they still dont know what is wrong. they think that I am now being made physically ill by UV light. hydroxychloroquine has almost completely got my skin rash under control but now it looks as if i may be housebound and then have to fight with DLA to prove I am actually sick!! My husband is really trying to help me but like others have said I get so angry - for no reason whatsoever and take it out on him. And I have lost most of my friends. No one wants to always come to my house, they would prefer to go for a meal or tea but depending on how I am feeling I may cancel. But I suppose it is like the saying - you know who your real friends are.

    I am trying really hard to stay positive and answer peoples benign questions about my condition - I also have fibromyalgia. I feel like they are looking at me and thinking she's making it up.

    So, just a bad week for me and its only Monday. I have a hospital appt tomorrow and gp on wednesday. After that I have a meeting with my works OHS people and then Thursday a meeting with my work. All of these mean I have to be under UV lights which will just make me sick again.

    It sounds terrible but I am glad there are others feeling like me, cos then we can help each other :)

  • I like this blog I feel I'm just at stage 1 of learning and confused by it all and how I feel but now I know everyone has to go/been through stage 1 thank you all for your replies and your honesty xx

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