Feel. Down and alone

[suemac]

Went to docs other day waste. Of time saw a locomotives l went with my list. Suffering with mouth ulscers. Dry mouth. Extreme tiredness. Also l feel lm paranoid on edge blah blah blah he just went on about smoking not back at derms till june

[loopy-lou]

Hi

Please don't feel down and alone. That is why this site is so good. We are all going through similar things and understand. I personally don't feel GP's really understand the way we can feel. I know my GP has only 2 of us with Lupus although he is sympathetic. Could you not change GP in the hope of finding someone more sympathetic. Also why not ring your derm and ask if there is an earlier appointment-someone else may cancel. Good Luck!

[Hidden]

We've all been there. We suffer from an invisible illness that most people know nothing about and don't understand. Sometimes our own GP's don't know what to expect or say when it comes to lupus. Terrible, but true. That's why these support groups are so valuable to people like us. We understand what each other is going through. We've been there at one time or another. Lupus can affect ANY part of the body, this includes the mind, too. It's a complicated illness and who better than another lupus survivor to help try and cheer you up and completely understand the difficulties you are going through. We're here for you, for each other. I hope that down and lonely feeling you're experiencing passes soon.

[Jaxqueline]

Yup, it is horrible isn't it, but my best advice is to talk to people, let your feelings out, I spent far too long not doing that. This site is also a blessing for releasing feelings. Also with your GP/Dermo - pester and fight for your rights, keep on asking for an earlier appt or another GP, persistance often pays off. Good luck and take care.

[lucy-may]

Hi your not alone, we are all here for each other, we all know what it feels like,that horrible feeling of being alone, but talking to others really does help, ((((hugs)))) x x x x

[sheshe]

l know of docs who dont know that much about lupus ,sometimes we know more. I to get very down and it can last for weeks , but i know it will pass. And now after 18 years of living with lupus SLE and Discod Lupus i take life one day at a time ........................

[suemac]

Thankyou for your kind words and support does anyone live near derby it be nice to meet another sufferer

[Emmamarie]

It took for my Liver to be involved before my Doc took me seriously. Then He was all sympathy and crap. He wrote on my app for DLA that there was nothing much wrong with me I was just obese and had a few allergies. Keep at them and don't give up. I hope you have better luck.

[Maureenpearl]

Hi Suemac

I think you should get in touch with your consultant as he/she knows more than your GP about lupus. You can ring the secretary or Rheumatology nurse to ask for your appointment to be changed for an earlier one. Try chewing gum for your dry mouth as this will help to keep your mouth moist and breath fresh. Try to rest as much as possible, even if it means going back to bed during the day or getting up late each day if you do not work.

The more stressed you are the more symptoms will manifest so please try and relax and know that what and how you are feeling each day are real.

Hugs and kisses

xox

[Hidden]

To suemac:

Please know you are never alone with this blog and its members. Be kind to yourself. We all get 'wonky' in one way or the other. It is the beauty of this blog. We are as we are; reaching out sharing our individual experiences empowering the whole and halving the confusion that is lupus.

This is not in your control. This just is and it is very real.

Only you know you. Only you can help yourself by sharing important health 'highlights' (flare ups - date, duration, symptoms, ...) with your doctor/s so that they can help you.

Keep at the 'white coats' and never give up speaking/revealing your truth to them. Unraveling the mystery that is you takes patience and dedicated resolve (for the doctor/s and for the patient/s). Never ever give up ... we listen we hear we 'get it' ... only through consistent repetition can we make the doctor/s do the same. It is as complicated for us as it is for the doctor/s. Complications with complications.

ON ON ON...

(sorry a bit of a ramble there)

I sincerely hope you find a good path to better health / healing / ongoing management. It is what we all seek.

Be well.

(QUESTION TO BLOG MEMBERS : Is there an introduction area to post for new members ???)

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi Nouska,

There isn't an introduction area at the moment. It is under discussion between the admins and the website designers. We have a long list of website improvements that they will be working on.

[Hidden in reply to Paul_Howard]

To Paul_Howard:

Okay no worries. Thanks for the reply. Keep up the good work.

Please keep the site simple. Those of us with vision issues do not tolerate 'visually active' (moving adverts for example) on screen well.

Cheers.

[Paul_Howard Partner LUPUS UK in reply to Hidden]

We'll certainly keep it as user friendly as possible. We appreciate your suggestions.

[Hidden in reply to Paul_Howard]

Awareness is key. As you are no doubt well aware computer usage can be challenging when a lupus patient is in 'flare up' - when most in need of support. Best not to make it more of a bother.

LostEye a private funded American support group. It might benefit the LupusUK website designers to view it as it is very user friendly (as it must take into consideration the visually impaired/blind). There is always room for improvement but LostEye has been a thriving community, therefore a successful website, for many years; unlike most support sites which dwindle and fade away.