Bad start to my day.... Again!! :(

[cheeseyquaver]

Woke up crying for the 3rd time in a row, feel lost and alone. Decided to look for help and found this site?! Need to know more about local support groups and meet ups as only Lupus sufferers would understand how I feel. The weather brings different symptoms for me an with this dreary wet rain dragging on an on its like it's getting in my mind and outset and I can't seem to shake it off like I normally do an it's only gonna get worse. Live my life most of the time pretending I do not have Lupus but sometimes there's just no getting away from it & atm it's like a big dark shadow weighing heavy on my shoulders. So I need some support guys, can anybody help!!

[MandieR]

Oh huni, you do sound so low!!!!! and you are right all of us on this site have been there done that AND brought the bloody t shirt

i am not aware of any support groups in our area, where abouts do you live then? I am in Richmond, well Kingston/ Richmond borders, but we could look into it and see if there are any as I wouldnt mind going to one either, altho at the moment I am in a 'good place'

keep in touch and dont feel alone, everyone of us is here for you xxxx

[Maya23]

I'm so sorry to hear you are feeling so rubbish today. You are not alone -I often feel low ( I know what you mean about the big dark shadow), but since I found this site a few weeks ago I no longer feel alone with it -a problem shared is a problem halved as they say. What's been helpful also is that went for counselling last year to help me come to terms with being diagnosed with lupus. It helped me cope with the stresses and changes lupus brings to my life.

It's been really tough this year with the weather, first the early sunshine making me flare, then the dreary dull wet weather makes you feel 'under the weather' in a different way. I long for the sunshine -but then feel trapped indoors when it's sunny so that I don't flare again!! I think we could all do with some cheering up here.. I've decided to try and make an effort to do some nice fun things this week, like go to the cinema in the afternoon, watch funny films on youtube and have tea and cake with a friend. It's tough living with lupus but I'm sure that talking about it, laughing a lot and eating some cake will go some way to help!

Sending you extra strength xx

[cheeseyquaver]

I know!! And it's kinda just come out've no where!! Was doing sorta ok up until just recently. The many faces of lupus ay?! :} : |

I live in South East London, Bexley. If you find anything out i'd be grateful if you'd let me know. xx

[lillylou in reply to cheeseyquaver]

Hi cheeseyquaver, I live in Welling and have Lupus plus some extra's as it always seems to like company.........this is my first Blog so am a little unsure of myself and what to say. This is the first time I have contacted other Loopies and I am amazed because so much of what I am reading I could have written myself.....I dont understand why the medical profession finds it so difficult to deal with Lupus because we share so many symptoms etc. If only they would listen and see past the healthy look and forced smile.My family are also brilliant but I try very hard to hide the level of pain I am in and the depth of depression I suffer at times, as I dont like to cause them worry. I am my own worst enemy as I am unable to tell anyone including doctors exactly what problems I am having as to tell someone everything sounds so dramatic and over the top. i am glad I have found this site as I feel I am amongst friends. keep your chin up and if you know of a local group please let me know as I would love to be able to talk to others who would understand. x

[cheeseyquaver in reply to lillylou]

I was like that yesterday, didnt know what to put at first but I felt so low that I needed to take some drastic action and i'm so glad I did now!

It's good to know you are pretty local to me too, if we do get this group meet up thing off the ground but like another lady said there are others that live all over the country so how we're going to do it im not sure yet but I will definitely keep you posted about it as like you, (other than at the Lupus clinic) I dont think I have met another Lupus sufferer!

I think the thing with the doctors is that even though each Lupus patient has a whole different set of problems but they hear them all over and over again that they take such a laid back attitude towards it unless they hear something out of the ordinary which makes me feel so angry because although when im telling them my problems to them it all sounds very 'run of the mill' (have actuallly had this said to me by a doc!) for Lupus patients but for US if it's the first time we are having this problem, its a big big thing to us as its OUR body thats going through it and changing like when I told them my hairs falling out or something, 'oh yea, thats the lupus' or my nails are going yellow and falling off, 'oh yea thats the mepacrine' Oh right! So I just have to just deal with it myself do I cheers for nothing!! So blaze`!!

But hey, we do have to sort of just get on with it anyway don't we, so if we all help each other on here I think we'll be alright!! XX

[Maddieroo in reply to lillylou]

Wow you have described my life to a T. Having had lupus for 40 years starting at 13 I have had many ups and downs. Yet, I do not share much with my family, even though they are very supportive. everyone has always said oh you are so brave to live your life in such a positive way, blah blah. But they do not really know how much pain and depression I feel, let alone the incredible fatigue. But now that I am older and just diagnosed with yet another icky autoimmune disease (PBC) I think that let open the flood gates. I am talking about it to my sister and even parents more than before. My poor nephew asked me how I was feeling, and I told him! (he is 23) Poor guy didn't know what hit him! Did the same thing to a very nice neighbor, so be careful don't ask me how i am feeling because I will tell you! BTW this forum is very helpful, looking for a good support group near me (I live in a Wahington DC suburb in Virginia.)

[Looby in reply to Maddieroo]

Hi there Maddieroo... I have been logging into the American site recently. It seems that over there, at least the Govt and medical profession are starting to take Lupus seriously, and pumping dollars into research. We in UK have a long way to go, just in making the general public aware, let alone the medics!

Lupus can be quite a lonesome condition, so I do hope you find a friendly support group near to you.

[Looby in reply to lillylou]

You are not alone Lillylou! Neither my GP or Consultant accept that this is really Lupus, even though blood tests show SLE (do they even read our notes?) - it seems every time I go (which is not often, because I come away so deflated, they come up with some different diagnosis.....!!!

It really sorts out your real friends too - not that I burden them with ALL that happens on a regular basis. Friendship is a two-way thing, and I do so wish I was able to do more for them.(I'm still a good listener, so at least that's something...).

I love the humour on this Blog site - as when you feel really grot that is the first thing that goes up the spout! Thankfully - once the "brain fog" clears and my finger joints loosen - this can take HOURS some days - it is possible to sit on here and share with Lupy friends....

If you feel like raging against this thing...here's a good place to do it - and no-one will judge you for it.

[cheeseyquaver]

Dyrad you seem to know exactly what i mean (as Im sure everybody else does too) but you just put it into words i couldnt describe so thank you soooo much!! It is hard living with Lupus as we all look like perfectly normal on the outside but no-one knows what hell is going on on the inside. Except another Lupus patient! And I like what you said about that we long for the summer to get rid of the wintry sypmtoms & pains but then of course the summer heat swells our joints an brings other pains and problems and the sun of course is our number one enemy!! I have been managing my Lupus brilliantly lately so this bad spell is somewhat confusing me, i know i need to shake it off but just can't seem to do it. Have been diagnosed for 16 years now so it's not like im just getting used to it, an have had counselling in the past so i know all the things i know i should be doing, but they just aint working atm or am i not trying hard enough i just dont know. i think it's the feling alone part, or that my own circle of family an friends just sometimes forget that i do need help sometimes!! im strong but im not made of stone!! xxx

[Maya23 in reply to cheeseyquaver]

Yes I find that so frustrating that we look so well on the outside so people don't realise how much a struggle it is unless we say something... and I hate being thought of as a moaner! But I keep being honest with people so they might start to understand -some are better at it than others! I think it's good to let people know when you need help too -sometimes they are only waiting for a cue from us and are happy to step in and help.

In the past I've had anti-depressants, but recently I discovered that taking Tumeric (2x caps twice a day) seemed to help my mood. It supports the liver, so this apparently helps elevate mood according to the herbalist I spoke to about it. And it's also anti-inflammatory.

I hope you find something that works for you so that your low mood lifts. xx

[cheeseyquaver in reply to Maya23]

I think thats where i've gone wrong by keeping it all to myself and just trying to deal with it alone as i learned that bit about some are better at it than others a long time ago and the bit about always sounding like a moaner! Also everyones always has their own problems too an i think what i normally do is cover mine up an help everybody else out with theirs to distract me from mine! But thank you for your help today, it has been a big help already finding this site so i know now that there are others out there who know what its like. Will find out more about the tumeric as not sure how herbals go together with perscribed meds but will definitely look into it. Thanks again xxx

[Maddieroo in reply to cheeseyquaver]

Yes, it all so complicated. But I think true friends will help you but we have to ask for specifics. I just started asking for help recently and I have had lupus for 40 years! I am a dodo. People are very helpful when you have something specific for them to do, like my 89 year old father (who has more energy than I do, not sure whether to laugh or cry about that one) comes over and digs up my garden. He loves it as my parents now live in a condo apartment with no garden. My friends were very helpful while recovering for a few days after liver biopsy, I needed them to carry my disabled dog down the steps to the yard. See her photo at left, she has a birth defect that makes it hard for her to control her legs so steps are dangerous, she may tumble down. Other wise she is fine and she makes me smile! She is the happiest dog you could ever meet. Anyway, people were glad to help with specifics like dog walking or throwing trash away, etc. I think if we just tell the truth about how tired we are and ask for something specific it helps. But I am still struggling with having to ask for help. Always a work in progress.

[Looby in reply to cheeseyquaver]

You should be OK with Tumeric, as it is a natural substance...better not to have this on an "empty" stomach,or last thing at night however.

[Jaxqueline in reply to Maya23]

Hi Dryad

Very curious about Turmeric - I'm just being weaned off anti-depressants which I don't think have helped me and am now going to Counselling which I am optomistic will help. I've just looked online for some Turmeric tabs but got a bit confused. One said that it was a perfect buddy for Glucosamine which I take and reckon that it does help my joints. Some sites mention curcumin. Can you point me in the right direction to buy some. Many thanks, hope you have a good day.

[Maya23 in reply to Jaxqueline]

I don't really feel qualified to answer your question - I'm not sure about it interacting with meds.. I only take Naproxen x3 a day.

I take Tumeric 400mg capsules (by Viridian) x2 in the morning and x2 in the evening and put it in my food when I can too. I get them from my local health food store.

[Ugonna]

everytime i visit i feel so relieved... am not alone. try living in nigeria with lupus. no one but the docs know what u're talking abt. and i work in a high stress job. my boss thinks am lazy when i say am having a bad day. u look and sound good then u say u're having a bad day???? no one buys it. my doc says ignore them and pace urself. not easy. i had a really awful day yesterday, had to leave my car at work. sometimes am so depessed i simply hold onto God. my chant on such days is 'the joy of the lord is my strength'.

hold on dear, and know that u are not alone. hugs n kisses from one who 'gets' it

[cheeseyquaver]

Lol, sometimes even the docs don't know what we're talking about!!

It does feel sometimes doesn't it from outsiders like they make you feel like we're lying or putting it on! Will try your chant 'the joy of the lord is my strength'. Thank you for your support & encouragement. x

[tremarel in reply to cheeseyquaver]

Arh cheesyquaver I really now how you feel, it just makes you feel you're going off your head doesn't it. Everyday is so hard, the pain combined with all the horrible feelings. People just don't & never will understand, everbody just say you look so well. The only thing that keeps me going is my wonderful family & friends, they really understand & know I never complain or talk about myself to them. Also being on this site & chatting to people like you are a God send. Bless you! I've had lupus over thirty years & been on steriods all of the time. Kidney transplant sixteen years ago. Anyway enough about me.

Chin up, keep strong, I'll always listen to you. Please keep me posted.

If ever you want to chat or offload how you're feelin, please feel free.

You are defo not alone

God Bless Hayley x

[cheeseyquaver in reply to tremarel]

Hi Hayley thank you so much for your understanding! I'm the same I hardly ever talk about what is going on with my Lupus to other people, but having crashed an burned these past lot of weeks i have started looking for help, found this site for one, which im so grateful for already, an i did open up a bit more to my mum about it yesterday an she said she just assumed that cos i dont talk about it that thats what she thought i wanted! I suppose i have to remember our friends & family are not mind readers! Hopefully today will be a better day now i know i have all you guys to chat to and relate to we can all help each other! xxx

[Jaxqueline]

Knowing you're not alone is a great source of support. Lupus awareness month does not seem to be working, as far as I am aware it did not get tv coverage. My GP who is very understanding, readily admits he knows nothing about it as does my psych.

I live in Redhill, Surrey and although I hate the thought of support groups, I'm sure that they would be a great help. It is one of those things - you dont want to go but are glad that you did. (Bit like exercise!). Hope things get better for you and keep in touch.

[Paul_Howard Partner LUPUS UK in reply to Jaxqueline]

Hi Jaxqueline,

Lupus Awareness Month is in May in the USA only. In the UK it is in October. World Lupus Day is May 10th.

It is unfortunate that we were unable to get a mention of lupus on TV (this was not through lack of trying). There were a few mentions in different newspapers though. We also had a few celebrities tweeting about lupus including Stephen Fry.

We reached a wider audience than previously this year on World Lupus Day, hopefully next year, due to the extra attention we may be able to get some spots on TV.

[cheeseyquaver]

Hi Jaxqueline!

Lupus Awareness Day has never really worked for some reason!?

I think it used to be in October and even then I never ever saw anything up about it. Thinking about it the whole time i've had Lupus I've never seen anything up about it!! Except when I put up some posters up where I work and a collection pot but people didn't really pay that much notice which is quite sickening to think they know it's me thats got it an im one of their colleagues!! Personally I think that this Un-recoqnition is another reason why we find our illness so hard to deal with because when you tell some people about it they pull this face like "wtf are you on about you're making it up"!! And is meant to be as common as MS & Leukemia so why does nobody know about it still!!

It is, still, even to the doctors such a taboo illness they're still figuring it out an baffled by it, like at my doctors when I get a really bad face lesions they go get ALL the doctors in and all stare at me like i'm some form of rare species, when i suppose, in fact, i am!!

Well anyway the reason i asked about support groups was because when i was first diagnosed the nurse angie @ st thomas' put me in touch with some girl an she used to organise regular meet ups not always to discuss Lupus, to go do stuff, you know fun stuff, outings ect so i just wondered if that was still about but it doesn't seem to be the case an ive lost that girls number years ago which is a shame cos i snubbed it back then but need it now!!

Maybe us lot on here should organise one?!

Thanks for listening to my ramblings!! xx

[janetd in reply to cheeseyquaver]

Hello CheesyQuauver, sorry to here your feeling down. I to have yet to meet anyone with Lupus in my area. I live 20 mins from Bluewater, do you ever go there. I have only spoken to a lady in Maidstone a while ago on the phone as she said kent is a large area to cover so it's difficult to get people together, especially if they are too ill to travel. I would love to talk to others in person, as I generally keep things to myself, it's true people don't get it. I've had Anti-depressants and counselling on the phone, felt like I was on rashens with that. I think it's easier to get a smaller group of people together, I think it's possible. Hope you feel happier soon.xx

[cheeseyquaver in reply to janetd]

Hi Janetd yes i have had counselling and anti depressants in the past, several times! But they are always only a temporary fix so to speak, our Lupus isn't going anywhere unfortunately as there's still no news of a cure so after the counselling an tablets run out, we still have the illness so still, the depression and everything else that comes with it!! That's why though of sort of regular meet up's for us to be among people who would actually know first hand what we are talking about. Well i'm Bexley area so Bluewater is not too far at all and another lady was from Welling which again isn't too far at all so this could happen if people are really up for it, we'll wait an see how the response goes for a while and then i will set something up xx

[janetd in reply to cheeseyquaver]

Okay,sounds good. I've got relations in Eltham and Well Hall so there's quite a few places, people could meet up, even if it's someones house.xx

[cheeseyquaver in reply to janetd]

Or a pub...!! I'm sure we will find some where suitable! xx

[lupuswriter]

Hi cheesequaver, Sorry your lupus is taking a bad turn. In reading your post I remembered something I came across a while ago, a study that examined the quality of life experienced by lupus patients. According to this study,

(check it out at: sciencedaily.com/releases/2... as many as 92% of people with lupus experience anxiety. In my own experience, increased anxiety and mood disturbance means lupus is acting up so I treat the lupus. Sometimes I am not able to assess this very well because I am "not myself" so my family, and my doctors (that could be a psychiatrist or rheumatologist) let me know that something is wrong. Of course, these people have to know you pretty well or they'll just think you are emotionally unstable and try to treat that instead of your disease. You deserve to feel better. I hope you've seen a doctor that you trust and that your disease status, med levels, etc. are in order. Everybody out here, whether we have lupus or not, hopes your rough patch passes quickly.

[cheeseyquaver in reply to lupuswriter]

Hi Lupuswriter! Thank you that was really helpful, i showed what you wrote to my mum an explained like if im in my normal ways for a while an then suddenly the next few times you speak to me im being all narky, moody, down or sketchy like i do get then instead of tip toeing around me on eggshells, tell me, mention it to me that youve noticed a change in me so i can take necessary action so i dont decline further! Have an appointment with dermatology booked in june as i mightve worked out why ive had this dip, my mepacrine isnt being perscribed by my gp anymore (funding apparently!) so have to have it perscribed by consultant at the hospital an ive been without it for a while now so i think its run out of my system an im now feeling the effects of that. Hopefully when i get back on that things will right thereself xx

[lupuswriter in reply to cheeseyquaver]

Wow-what a sensible reaction to information that some people might find upsetting. I think it's always better to know than not to know. This disease is so confusing, to us and to the doctors, that we have to arm ourselves with every bit of information available. From my reading, I've learned it's a mistake to underestimate lupus. It can be a vicious adversary. I'm glad you're going to the doctor--wish it was tomorrow! Good luck.

[Looby in reply to lupuswriter]

I want to thank you for the helpful links you give to us....

The way to fight an adversary is to be "well armed" - I've learned a lot from the American Lupus link you gave to us, and some of the scientific info.

[lupuswriter in reply to Looby]

I am so happy to hear that. Everything seems to be so vague about lupus--except the fact that we are ill. My anchor is information. While few concrete answers exist about this disease, at least with science-based research, when we get an answer, we can more reasonably assess its value.

Here's to better science and better answers. And a healthy and peaceful day to all of us.

[MsDeb]

Bad start to my day is the perfect title. Brothers & sisters connected in lupus I'm sorry to hear of your discomfort, dark clouds, depression and the likes. For the last 3-4 days I have been in such a funk. It's good to know that someone actually understands even when I don't. Most of the time the doctors can't possibly understand what we're talking about because every one of us has similar and very much different symptoms. I wish you peace and calm, and a stress free week. Pray for me as I'll pray for you. Be blessed & stay blessed!

[cheeseyquaver in reply to MsDeb]

Thank you MsDeb for your lovely little message, sorry for the late reply! Hope you are well as can be xx

[janiceray]

Contact Lupus U/K as there is a support group in South London and if you can Join Lupus U/K even better, the help and advice i have had from them has helped me in my Journey with Lupus,along with my local group for the past 22 yrs.

And this site has also been a blessing.

[Paul_Howard Partner LUPUS UK]

Hi everyone,

Sorry it's taken me so long to get involved in this chat. I've been slowly catching up following our annual conference.

We are currently in the process of establishing some meetings around the Essex area. It looks like we have a lot of members around the Romford, Ilford area and so I imagine a meeting will be arranged around there soon.

If you go to Facebook.com/LUPUSUKESSEX then you can follow the progress. I'll post a blog in here regarding any arranged meetings too.

I don't believe this would be too far from you. It would be great to see you come along.

Paul

LUPUS UK

[Looby in reply to Paul_Howard]

Is there any chance of a similar group in the Midlands? I live near Newark - so can get to most places by train.

[Paul_Howard Partner LUPUS UK in reply to Looby]

There is an East Midlands group. If you call Gill Woodford (one of our contacts in the area) then she can tell you more about it. 01159 374168

[cheeseyquaver in reply to Paul_Howard]

Hi thanks for that but Essex is a bit too far for me as i dont drive but where else does the south london lupus group meet then?

[helentad]

Hi, sorry to hear you are feeling low and hope it starts to raise soon. One thing I read when I was diagnosed was on a website called wwwbutyoudontlooksick.com its called the Spoon Theary (sorry spelling just gone) it was written by a girl with Lupus so fits us well. You could print it out and show your family/friends/colleauges as it might help.

The weather is a pain in its self but you can get help with the sun, some Gp's will give Suntan lotion on prescription which helps if you don't pay for prescriptions or even if you pre-pay. I get factor 50 and always apply before I go out.

If I am going out for any length of time I always cover up. Long trousers Linen/cotton the same for tops and close knit to stop the sun. You can buy proper UV clothing but it is really expensive.

I always top with a wide brim hat. I bought one for this year in the sale at Tesco for 50p. I might look the odd one out at the school sports day when others are wearing shorts and t-shirts etc but now the boys have been in school a couple of years most of the parents know my ailmants (when you walk with sticks and talk to certain people it gets around). My boys school is great now as well as they always reserve me a higher chair and one that is shaded if outside and possible.

One last ting I do is that if I am doing anything or going anywhere ie a wedding etc I always plan 3 days ish rest days when all my family know and leave me alone so that I can maybe get some reserve for the event, also if it takes a couple of days after to feel a little less tired never say you are sorry or appologise for yourself it's not like you can do anything about it and it just makes you feel worse.

Best wishes to you and yours

Helen

[cheeseyquaver]

Thank you for taking the time to write your help and advice Helen. I do get suncream factor 50+ well i have to or i really pay for it, wish i could attach photo in this box as have had gruesome flares!! I do try to cover up to but am not as good at sticking to that as i really quite like summer most of the time an sometimes get a bit like you "will not ruin my summer" sometimes agaist the lupus! Am in constant battle with it well we all are but i mean like instead of me helping the lupus not be bad i sometimes make it be bad by not playing by the rules, rebelling if you like but then suffering the consequences after but in my mad head i kind of feel well if i felt normal for a day so what!! Up yours Lupus!! xxx

[lillylou]

Hi everyone its been a while, cheeseyquaver if you would like to meet for a coffee maybe in bexleyheath let me know, I am happy to make it an open invite to anyone who would like to come along. Date and time can be decided to suit everyone.It would be great to actually meet with fellow Loopies as I do find myself spending more and more time indoors and am starting to struggle when in busy or noisey environments. I used to be such a positive outgoing person who always loved to get out and have fun.I feel that socialising with fellow Loopies would enable us to not only offer each other support but could also encourage us to get out of our four walls and be more positive. I hope to meet you soon cheeseyquaver and it would be great if others could join us.