Confused????summer is usually the poision?but it seems winter is also?

Hey to you all,just wandering if anyone suffers just as much during winter as during summer ,for me summer always brings on flares ,and i get respite from cooler winter months ,apart from raynauds and joint issues in cold weather ,however im in one long flare and its been around 12 months long ,when will this end,my glands are still up since january ,im having an ultra sound on them soon (hope all ok) doc seems to think its all autoimmune related ?my head feels full of pressure ,my body like lead and when i try and do anything my flare escalates tenfold ,im extremly tearfull and have honestly forgot how it feels to be normal;( im super sensetive to everything ,light ,sound,noise ,people,certain music sounds sets me off crying and i think of sad things often ,when i think of good it just reminds me of how things have changed so much ,and feel even more depressed , i hate looking in the mirror and hate looking at photos of the past ,in a pretty dark place at the moment,!not sure wher to go from here ?thanks for listening ,we have no support groups here in the channel islands ,so this blog is mine lol!!;))))brave

22 Replies

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  • It will burn itself out at some point, regardless of season. Just try and do anything you can to help it along, if that means sleeping in the middle of the day, or just taking several baths a day, or change diet, not drink alcohol, only have 1 chocolate piece a day, that kind of thing, we are all different. You sound like you're really down, just be kind to yourself, we always want to map our future and we get frustrated when we can't but just try and take it one day at a time and wait this long flare out.

  • i know.....thankyou

  • it WILL pass my lovely, even if it doesn't seem that way at the moment. Big hugs x

  • thankyou

  • Hi brave, you could be writing about me at the moment too. Everything you say rings so true. No support group here in Kent at the moment either, so this site is a lifeline. Take care xxx

  • big smiles coming your way

  • Hi, Hope it subsides real soon. They are horrible and so unpredictable as in when they happen and when they go. Take care x

  • thankyou

  • I do hope this soon passes for you, and you get to feeling a bit better, l feel for you being so low at the moment, but it will pass. Big ((((HUGS))))) to you. x x

  • its getting worse ,how will it ever get better ?its like ive steadily got worse over a couple of years ,with flares in amongst,im worried that my condition is just slowly getting worse and i will never go back to a semi normal state,is this how lupus goes?do we worsen with time anyway?thanks for your support;)

  • The Consultant that diagnosed me DID tell me lupus was degenerative in many cases & 2 b honest I think as we all get older, it does seem 2 b more difficult 2 fight it, but having said that, I know of many lupus sufferers who have really gone downhill, but when they least expect it, everything gets back on an even keel 4 them. I have had the worst flare I've experienced yet which has lasted 2 years & counting but when I think about it, things r improving very, very slowly, but they r improving. Question u're meds, what works 4 some1 else may not work 4 u, personally every time they put me on Hydroxy, immunosuppressants etc I tend 2 feel 10 times worse, even after being on them 4 a while so I've come 2 the conclusion that the majority of meds don't work 4 me personally so I'm better off trying 2 pain manage & ride it out, but that's just me, we're all different. U're Rheumy needs 2 get his head out of his arse & do his job, which is 2 try and HELP u. Please try not 2 stress u'reself out, (as hard as it sounds) it only makes the situation worse, stress is not good 4 lupoids!!!!!!! Big hugs 2 u brave x

  • I love the way you write ,it makes me smile which is a good thing,yes i feel my rheumy needs to get his head out of his arse ,he just kinda sits there and listens to me waffle on ,squeezes certain points of my body etc,i asked to be refered to an endocrinologist ,get my hormones sorted ,i asked for scan of lymph nodes ,i asked for blood tests ,seems i have to ask for everything?to be fair i know theres no cure for this and they only know how to treat the symptoms ,but its almost like were responsible for our own health,i just wish there was more support in terms of after diagnoses etc .like how to deal with a new disease etc i suppose it all learning ?only i wasnt ready to have to go back to school ,its all very exhausting ,thanks for all your input ,it really helps;)

  • glad I can make u smile, just wish I could do more 4 u :0( as I've mentioned somewhere or another (I seem 2 b spreading myself about a bit lately lol!), the best thing we can do like u say is swotting up on things ourselves, I know we shouldn't HAVE 2 suggest things 2 some of these 'Specialists' but if it gets results & they LISTEN then that can only b a good thing. Just found out my appointment with Rheumy this week is cancelled as he's having a month paternity leave & has fallen behind with his lists, cheers then lol! Don't get me wrong, I don't begrudge the fact that he wants time off 2 spend with his wife & baby but typically, it's smack bang when I need 2 c him 2 discuss things, not just a routine appointment. I'm damn sure I must've been an absolute bitch in a previous life & this is karma ;0) Maybe an idea 2 ask u're GP 2 refer u 4 counselling or something? Sometimes it just helps us 2 get things out there. If u ever need a chat or just a mad rant, I'm here my lovely ;0) x

  • so true about karma,i only said to my hubby the other night ,what ever ive done to p--s someone off in this life i think it time to stop the punishment,lol!Think its just human nature to feel weve been dealt a bad card?I know theres a million people in this world who are in same or worse situations ,it doesnt make it any easier though ,and for me i wish everyone i know could just be in this body for a while and then they would truly understand ,i could stop feeling dissapointed by the lack of support and stop exhausting myself expecting more of people ,the initial stage of being diagnosed was relief ,as it confirmed i wasnt going mad ,as i started to doubt my sanity after 16yrs of so many ailments with no answers,so lupus answerd that at least ,what i wasnt prepared for was a worsening of the disease and the greif that goes with it ,it is so much to deal with ,thats so much added stress which im sure exacerbates lupus?thats with out the normal day to day stresses that life throws at us ,completely lost at the moment ,cant work very much ,so dont have the contact i used to have with people,and family and freinds all live in devon ,i do have a couple of freinds ,but im not one to dump my stuff on people ,it just scares people off ,i think it would be good to talk to an expert so will ask my G.P ?why dont they offer it?another thing to ask for i guess?well great talking and i hope youre still on the up from your flare ?you sounded really down last week;(keep well ,and thanks for your support ;0 brave

  • Life can b an absolute bitch but we've just gotta keep getting up after each & every knock, even if we don't feel like it most of the time :0/ Stress DOES make it worse, any decent rheumy will tell u that & I agree, it's a very lonely disease, my best friend of over 20 years has recently cut contact with me, eventhough she has seen EVERYTHING I've been through with this illness, (I've supported her thru her brother's suicide, 2 marriage break downs, she's turned 2 me 4 every problem she's ever had which I've sorted out 4 her, no questions asked but as soon as I need a little help, some1 2 talk 2, I don't c her 4 dust!) even some family members steer clear of me as they're unsure what 2 say or how I'm going 2 b but hey, I don't need the added hassle of people like that in my life (even if I now only have 'acquaintances' rather than 'friends' & don't go out 4 'coffee' with people (think this is why I have so many guinea pigs cos they love me unconditionally & have 2 spend time with me whether they like it or not!). People just don't think sometimes but I guess it's human nature, the best thing we can all do is find support somewhere (I find this site invaluable 4 that) & honestly brave, u ever need anything, give me a shout my lovely, I can honestly say some of the nicest people I know r people I have never actually met, but people who I have befriended on this machine :0) x

  • well i hope were more than just acquantancies(i cant spell ,sorry lol)take care ,lets get festive ,yipeeeee x

  • I like the way u think girl ;0) Now where's that Baileys........;0) x

  • So frustrating and horrid when it goes on for so long, keep your strength up and huge hugs to you xx

  • thankyou

  • hi brave, just stay strong, i was diagnosed a year ago when i was 18, it hit me like a tone of bricks. I just try not to think of my lupus its extremely difficult not to, but when i do think of it i feel more depressed.

    ive had the worst flare in the past two weeks,constant vomiting, headaches sore joints and stiffness in my neck. I just couldnt handle it and would cry myself to sleep.

    I told my best friend how i was feeling and she said this

    'The world always puts people in hot water to see what they're made of, and only the best will come out on top. You're one of those people, lovely, I know it! '

    reading that made me realise how strong we all are fighting every day as it comes! So dont give up and remind yourself how strong you are,

    wish you all the best and good health :) xxx

  • what a lovely comment ;)))thankyou x

  • What a lovely comment;))) thankyou x

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