21,171 members16,760 posts

Update for the crazy feeling

Hi :) saw a different guy today and I told him everything, he was concerned but not convinced its my mixed connective tissue disorder (Still no bloody diagnosis) causing these problems. Due to my insane teenage years of self harm, violent outbursts, drug abuse and mental issues they are convinced I'm mental. I know that this is not me! I was a stupid messed up kid 5 years ago and a short space of time it may be to them its not for me. I left home at 16 got my own home and sorted my head out so I know something is wrong. Other than this medical crap I'm in bliss and I'm a very stable and happy person. Iv not been that Horrible person in years and nothing could make me go back, not autoimmune disorder or anything else. I'm being so honest because its just How I am, open book :) my lungs and Heart are all clear too btw so no worries there. I'll do the assesment then prove its not me. He assured me they will scan me before they dump me in therapy so il prove I'm not mental soon hopefully. It's a shame I don't have all pd you to back me up that I'm normally very happy and collected. Thank you all for checking I'm ok and I hope those of you struggling with the Same problem get someone to listen to you. Massive loubie hugs and loves to all my friends on here and anyone else Who may need a hug too.

Xxxx loubie Xxxxx

11 Replies

Just to Erm help paint a better picture the drug abuse I was labled with was only ecstasy, I say only because there was no addiction. I just wanted to make sure no one was imagining me with needles hanging out of my arm lol I know now it wasn't the correct route but at the time they wouldn't give me anti depressants so it was my coping mechanism. Feeling now iv revealed too much but I needed to be honest. I hope none of you think any less of me and I assure you this is not now Who I am or What I do. Since getting pregnant and then having my miracle son I have not been tempted and Never looked back. Never would. It's a section of my 21 years that I'm not proud of but I wouldn't change it, sounds silly but it made me look at my life for What it was instead of wanting to end it. This is Why I know that this isn't in my head, I learnt to deal with my problems properly and I know that this isn't me losing it. I have Never felt like this before and talking isn't helping it go away. Anyway I do hope you all understand this, its not something I talk about openly or frequently.

Loubie Xxxxx


Oh love, we all do things that we shouldn't have done, I aint exactly been an angel but at the end of the day, we're all human & what we've done has shaped us in2 the people we r 2day. Don't beat u'reself up about it, sure, there r probably things in our pasts that we'd all like 2 change but life's too short 4 regrets. No 1 will think any less of u, u're being open & honest x


Thank you for sharing and being so brave. You are right not to berate yourself for the past (for that is what it is) and to concentrate on what you have now and where you are going. I'm just pleased that you are getting the help you need now and in doing so have probably helped so many others on the way who may be frightened to speak out about this type of illness which should not be a taboo subject anyway. Take care and thanks to you:) xx


Nice little link here 4 u 2 read.

Believe me, I am (or should I say WAS!) 1 of the most mentally/emotionally stable people going & even I had 2 push like Hell 2 get them 2 realise my problems were not just down 2 the fact that I was being 'hormonal', 'dramatic' or just having a hard time dealing with things. Fair enough, I could understand them coming 2 that conclusion if I didn't have a diagnosis or if my diagnosis was relatively new but after having lupus 4 19 & then suddenly having all this stuff going on in my head?

If they DO send u 2 c some1 (& in all honesty, a psych, Neuro or counseller will b better equipped 2 assess any mental/emotional issues u have, rather than a rheumy anyway) it's not a bad thing, at least u may get some answers.

Fab news about the heart & lungs though :)

Stay strong honey x


It's hard to talk about it but for Some reason when I wrote it here I had no fear of being judged. THat page was helpful (when my phone let me read it lol) Thank you :) I just hope they find a way to make it stop. THe vomiting is really stressing me out tho, I love food and not being ablee to eat is a nightmare, been forcing it down and desperately avoiding being sick but if it flies out I have no choice. It's strange to think that 5 months ago I went to the doctors for a lump in my breast and after being told its all ok I plucked up the courage to ask them about my skin again, since the 3 times I asked before Why I was cold and purple they told me it was my skin colour! I was like a China doll before and now I look like barney lol. The red spotty rash on my face and the blue cold spots on my arms made her do blood tests immediately, I'd been tierd all the time for about a year but put it down to having a toddler, my fella joked that I was always poorly. Now I know Why I feel great, knowing is half the battle eh xxx


Loubielou I'm no innocent I dabbled in recreational drugs years ago too and some of my friends did a lot more than me and their fine.just wanted to tell you while I was in for hysterectomy I met this lovely woman who was in for same and same reason endrometrosis at the time this was a relatively new disease.she was told it was psychological and went into hospital it was them that ruled it out and asked for more physical test to be done and how she eventually got help she needed.I'm not you should go down that road either can't you get second opinion from another doctor x


Loubie................bless your heart, and bless you for your openness and honesty, altho to be fair, everyone I have had the pleasure of ''chatting to'' on here are really not judgemental. And nor am I. We all need support, we all need somewhere to go and talk our little socks off, to moan, to shout to scream and also to laugh and let off steam.

I am hoping beyond hope that you manage to stay strong enough to DEMAND that someone take notice of you. YOU are the only one that truly knows how YOU are feeling, and dont let anyone tell you different.

It is soooooo bloody hard in a day to day set up to get GP's to even acknowledge that what we suffer from and so I send you lots of spoons and support etc to maybe add to your strength.



Thanks guys :) he seemed to want to do other tests aswell as a psycological evaluation, but I guess ill find that out on the 19th. I hope they realise I'm not Some insane person Trying to make their job hard but tbh it seems to me that my brain being effected is seeming very likely afterall all my other organs have come back fine so either its attacking my neurological bits or just my muscles and joints, I do hope its just my muscles and joints but with all the symptoms its not seeming likely. I just want to be me again, I'm losing so much that if I lose my marbles too it'll bloody kill me. Surely with me complaining of vision problems and high fever and headaches and vomiting this should be a clue its not psycological? AFTerall I have had these problems from before I found all this autoimmune stuff out. I hope my real rheumatolgist takes my complaints seriously and Does an mri, if that cumea bk clear then ill admit I'm mad lol xxx


Hi lubie. I am fairly new to the site but when I read your blog my first thought was how honest you are about your feelings. This is a rare gift and I am sure you story will help others feeling the same way to open up too. Thank you you and God bless. Xx


Hi Loubie, I just want add, to everybody else's comments, that I too admire you for being so brave and honest - telling us so much about yourself. Well, you're amongst friends here ..and it's good to talk. ;)

Being ill is difficult enough and having to fight to get doctors to realise it's not 'all in the head' makes is so much harder. It is a great help to know we are not on our own and I think other people's comments (perhaps list some..?) may come in handy when seeing our GPs or consultants. We can't all be 'round the bend' !! xxx :)


Thank you to everyone Who thinks I'm brave for being so honest and open. I really hope that everyone is this honest, if we all were then the world would be nicer :) I like being open, ppl generally find me Easy to talk to and trustworthy because of it. Got a head full of secrets :) its really nice to have ppl be nice to me for a change, my honesty usually means I get in trouble since I don't suffer fools lol so to be told all these lovely things is certainly a first! I hope your all doing well and if you need a chat plz don't hesitate to send me a Message :) xxx loubie xxx


You may also like...