Emotional!

[LillyAlfie]

Got told in October 2010 I have Lupus. I'm finding it hard to get my head around and keep getting very emotional has any 1 else felt like this! I'm a very positive person but for some reason I'm finding hard to be positive at the min! I look at my 2 children and get really upset! Not sure if my tablets are making me like this?! HELP my goin luppy?!

[LillyAlfie]

Got the date wrong lol October 2011 last year I got told by my Gp. Its only been 6 months!!

[gertie]

Hi Lilly, I am really sorry to hear you're struggling. I think most people who are diagnosed with Lupus have a very difficult time coming to terms with it. I found that whilst my Rheumy and GP dealt with my medical care there was a big gaping hole left in dealing with personal care and psychological needs. I was in denial for a long time and would not accept that I had an illness and I would advise strongly against that strategy! I did however ask my doctor to refer me to a psychologist (not a counsellor, a medically trained psychologist) and she helped me with coping strategies to basically mourn the life I once had and to not feel guilty about absolutely everything and to accept I had an illness, the waiting list was long but it helped me immensely - maybe something for you to consider.

Take Care

G

[irenestephen]

Hi - I think everyone is a bit afraid of the lupus diagnosis.

I Found it quite to take it all what it was going to be like and still things happen that still make me wonder about this diagnosis ( and that is after 14 years from diagnosis). I had not even heard of lupus never mind the facts of what it could and could not do!

My advice if it is helpful is to take things slowly and remember lupus is so diverse that no 2 people have exactly the same symptoms and problems. I went away and bought every book there was on the subject and was quite dazed by it all. (and very frightened after trying to digest all the things that could or could not do!)

This sight is invaluable in being able to talk to people who are in the same place as you - I am a firm believer in that no one knows how you feel about it all unless the other person has been through it too.

Have you got a good rheumy. doctor and GP because they are the first port of call to discuss your anxiety you have about the diagnosis?

Being positive helps but there are times that every one gets down and weepy. God knows I have shed quite a few tears over the years and am on anti-depressants to keep me going. I try to be upbeat too but sometimesd I feel like it is a losing battle. This illness i puts up a good fight!!!!!!!!!!

Take care and remember you are not alone - Irene x

[amandalilley]

having been told you have Lupus was for me like going through a berevemnet. I have experienced all the emotions you can think of over the past 14 years and they still do sometimes.

My emotions change daily, hell, theycan change from moment to moment, and I too am a very positive person. What you have to try and remember is that Lupus pain and symptoms are really not like any other, they change constantly and the pain is not like a toothache which can be erased with ibruprofen. Sometimes you will lose against it BUT you can become the one who controls it too.... It takes time. Give yourself a break. Take time to understand how it is affecting you and those around you. Sometimes the smallest of changes can make a difference. Get yourself a punch cuhsion or a very tough pillow. use it to take out the frustration. It is a long journey to understand this disease BUT there are loads of us Lupies who are out there to help with all sorts. Unfortunately there is not a lot of other help.

beat the butterfly.com is a site we run for Lupies, please take a look and if it helps thats great. There are some wonderful Lupie people on this site, use them, they are the ones who have lived with the disease for a long time like me.

Listen to your body.

I hope you can feel a little better soon I promise it will get easier especially with all us oldie lupies out here!!!

Sending you loads of hugs, love and sunshine.

Mandy

[LillyAlfie]

Thank you all so much I'm going on hoilday on the 15th of may to the Cayman Island so that will be a nice break time to relax and hopfuly clear my head and come back and take control of this disease!! Its lovely talking to you all because we are all in the same boat but differant in another way! Thank you x

[Maddieroo in reply to LillyAlfie]

I have had lupus for 40 years since the age of 13, and I never really dealt with it emotionally unitl fairly recently. But the best thing is to consider lupus a part of your life not your whole life. I am glad you are going on a holiday. Remember the sun down there is much brighter and hotter than UK and you will need to wear sunscreen and long sleeves even in the shade!

[Jude65]

I felt just like you when I was diagnosed 20 years ago. The loss of health and consequently the loss of my previous working life was definitely like a bereavement. I felt so sad and afraid. But I knew that this was a normal reaction to this major event in my life. It took me a very long time to accept that my illness was chronic and I would have to live with it for the rest of my life.

I completely echo what all the others have said; all their comments are so true. We all have such a lot in common.

I wish you lots of support and strength to live with an cope with this condition. Its not easy, but then who said that life is easy?

Big hug.

Jude

[janetd]

If you get the opportunity to see a Psychologist then take it.I had Counselling over the phone, I had four half hour sessions and silly sheets of questions that grade how you are doing. I won't be seeing my Rheumy until August now,so I am considering going private. You can't get much done in two hours of counselling can you,it's so stupid. Also if the people around you don't understand then it's a hard battle to fight. If you need to have a cry, go ahead and cry, it will do you more good than keeping it bottled up. Warm hugs on this horrible cold, wet day.xx

[Jaxqueline]

Hi

Yup, all the above advice is good. I am on antidepressants but try to stay positive. I would say that the best advice is not to bottle things up and not to be afraid of telling people how you feel, they have difficulty understanding the pain and frustration especially if you look well like may Lupies do. I have seen a psychotherapist and she has helped me look at the positive in life and taught me not to feel guilty. Instead of saying the things I think I (or other people) think I SHOULD do, to focus on the things I COULD do. Sites such as this are excellent to vent and receive support. All the best x

[cloggy73]

Hi Lilly

I second what everyone here has already said. What you are going through, the emotional roller coaster is entirely normal, and it is like a grieving process for your lost identity and your past healthy life. Personally, it took me a considerable length of time to accept my diagnosis and I still have my low days but on the whole I lead a very positive life now. I saw psychotherapist and it was the best thing I ever did, helped me along my way to accept my illness and the new me.

Learning to have self compassion is tough but imperative, so be kind to yourself and listen to your body. Easier said than done I know

Good luck and enjoy your break!

M

[LillyAlfie]

Thnk you all for you answers they have all put a smile on face!! Iv started going to cbt or cba I can not remember what its called! So I'm hoping that will work!? Thank u again!! Emily. x

[Maya23]

I was diagnosed 2 years ago now and it has certainly been an emotional journey coming to terms with it, and understanding it and how it effects me and my loved ones. I wouldn't be too hard on yourself, it's a natural process, just like different stages of grieving. I often felt that many people just couldn't understand what I was going through, so I am very pleased to have found this site so we can share things and really understand and support each other.