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I think it is finally hitting me that this thing is never going to go away. Not only it isn't going away, it will go progressively worse. I will retain fat on my body in places I never thought I would, my skin will end up crisscrossed with purple lace like marks, I will have bruises, my veins prominent under the skin, I will be bald, my memory will go, my wonderful and sharp brain will start jumbling words, my eye sight will diminish. And this is without taking into account any other organ that could be affected, or joints, or God knows what else.

I've been away for few days visiting some family. As usual when in someone else's house, I haven't had time to focus on myself much, which hasn't been a bad thing and actually I have been feeling ok throughout. I got home today, took a long bath and then I looked in the mirror. I have lost so much hair, oh my God! I was so stunned, I started crying. Then of course I started looking at the rest of me and I lost it, really. Because it is not going to get better, it will get worse. And I don't know how I can absorb that and carry on regardless.

I don't know how you all are able to carry on. Maybe I will too find a way tomorrow but today I'm absolutely floored by the realisation of what lupus means to my future.

17 Replies

Darling, I know it's difficult but u have 2 try not 2 dwell on on the things that COULD happen. Getting on that slope is a very slippery one. U've had a busy few days away & it's probably taken more out of u than u realised. U need a few days 2 totally relax (if u can) & do as little as possible.

We carry on because we HAVE 2. Yes, it's bloody hard. I myself felt in a very dark place not long ago & couldn't c a way out so I can understand how u feel. U have 2 choices: U can let this sh*tty disease floor u, or u can think "ok, u may have knocked me 2day, but I WILL get back up & u won't beat me". It's awful 2 read u're feeling like this as u u'reself have given words of encouragement 2 so many people on here. Unfortunately I don't know what 2 say 2 make u feel better Purple, but I know u're made of stronger stuff & so do u, u're emotions prove that. Have a good cry, let all of the negative feelings, hurt & anger out & hopefully afterwards u can look at things in a better light. Sending u loads of love & hugs x


Thank you for your kind words. I've been crying on and off for the past hour or so. I've also been researching hair transplant (split views on the net on the viability of that for lupus, it seems) and clinical trials for medicine looking at cognitive impairment (haven't found any), which probably shows I haven't yet been giving up. I suppose I'm scared. I will take your advice and go to sleep soon, hopefully a good night sleep in my own bed might make me feel stronger in the morning. Thank you again.


Thinking of you x I've been there but I agree a good night's sleep does do wonders. Take care of yourself. Try and share with those around you. xxx


purpletop thats great that you find being with other people help. believe it or not its taken me a while to realise that. it stops us from thinking tooo hard about lupus and putting it on the very back burner where it belongs.

you are not just lupus you are a person who obviously loves life.

good on you for stating something that i/we sometimes forget.

big hug!


So sorry to hear you feel so bad at the moment. As others have said we all understand just how you feel. If you have been busy with friends can you now take a little time for you to get your inner strength back? Sending hugs and comfort.


Sleep hasn't managed to lift my doom and gloom outlook but I have spent some time on the net looking at future medication for lupus currently in research. It seems that with the approval of Benlysta many other pharmaceutical companies are now encouraged to start or continue research in lupus and trials of already developed medication. I notice that one of the clinical trials is for Epratuzumab, which has already been through the first 2 phases of clinical trials that look to demonstrate efficacy and it looks as it has been successful for moderate to severe lupus including improvement of mental health scores (I have optimistically assumed that includes memory). Side effects seem mild for this drug. They are now testing what the optimum dosage is and length of treatment. I found this in an article on lupusresearch.org but don't take my word for it, check it out yourself, this is only my interpretation, I don't want to give others false hopes!

However, I personally take hope in assuming that if I manage the illness properly in the next 2 to 3 years, I might be able to take advantage of the new wave of drugs whose research trials already commenced 10 years ago.

I'm off to organise the Xmas tree, thank you all for your support!


Big hugs 2 ya honey x


To you too, Sher, thank you.


any time my lovely, just wish there was something more positive & reassuring I could say. Talking does help, but maybe u need 2 take something 2 help lift u a little, there's no shame in asking 4 antidepressants, I think a lot of us have taken them at 1 time or another 2 help cope with this. I used 2 write a little diary of all my thought & feelings, no matter how savage they were & I found that seeing them outside of my head seemed 2 help me get things in perspective. It will get better & u will find a way my lovely but it can be so bloody hard.

Off 2 try & scale the loft 2 dig out the tree & decs, cue many bruises & a tirade of foul language ;0)

In my thoughts honey x


Dear purpletop, it is hard to have this disease and stay happy. But all I can say is dnt loose faith, hang in there and I believe things will work out for the better. I look at myself at the mirror I wonder what has happened to me but I try to hope for a better 2mro. Take care dear loads of hugs and xxx


Hi purpletop

hang on in there this feeling you have at the moment will pass nothing is ever all good or all bad....take comfort that at some time we have all felt the same

sending cyber hug xx


Bless you Purpletop for your honesty and for saying what we all sometimes feel. It's a frightening illness because we never know where it's going to target next. It's the uncertainty that causes us to fear and also because we have had to change any plans we had to manage this illness. Try to stay strong and look and to look at what you HAVE GOT in your life that is positive, note the changing of seasons, listen to the music that you love, cherish your family and fight, fight fight this horrible illness.

I ended up having an emergency appointment at the hospital on Saturday due to not being able to empty my bladder and my back/all round my hips very inflamed:( Like you it is always that sinking reality that something is wrong and where is it all going to end up. But for now I'm living and if I don't see the positives I will truly sink and I want to swim.

Sending you a big hug with total empathy to how your thought process was yesterday.......today is a brand new day xxx


I agree, the uncertainty is terrible. One part of me strives to get a positive answer, something that will clearly map how this thing will develop so I can absorb and deal with it, hence the numerous visits to doctors, tests upon tests, scans upon scans, in a desperate attempt to get a firm view. But the other part of me is seeing all this and it is shouting to stop, and tells me that the doctors don't know, the tests are not that tuned to catch everything and that basically there is no answer other than just give it a go and see how it is. It frightens me and I don't know how to deal with it. I probably will find a way but for now I'm in this in-between stage and let me tell you, it isn't nice.

Thank you for your support!


I Know what you mean about wanting it all to stop. At the dinner table yesterday my husband making light conversation asked if we could have one super power what it would be. As you can imagine in what was meant to be a light hearted conversation family so family said things like being invisible, being able to fly etc. I thought just to be healthy. If ever this goes into remission I swear I will never take my health for granted again. I really hope you are able to overcome this extremely difficult time xx


Yes, I wish for health too, I think we all do. It is like we want to say "ok, we learnt our lesson, now give us back the health you stole". Thank you for your thoughts.


Purple, I lost my hair completely at the age of 13 and I mean total body hair. It was a terrible way to hit puberty and when I loo back I have no idea hpow I managed to keep going and not throw myself off the nearest bridge. But, life has wonderful moments, we have families and friends who love us you do always manage to get out of the terrible blacj place you are finding yourself in right now. I was 26 years old when my hair finally grew back after many false starts and heartbreak.

As a 40 year old woman, I now know that my hair does not define me. I am so much more than that. I am also so much more than the 2 stone of weight I have put on in the last 18 months. No one defines me except ME!

Cry as much as you need to for a while, but then get yourself up and look at what you do have! I am sure you have so much more than you realise at the moment and you can't live on what might be coming in the future. As long as I am alive this girl aims to kick lupus up the backside! Join me!


Your message is so uplifting, thank you. I agree about appearances not defining us. The thing about hair and weight is that there are the first visible signs of the illness for me, so no matter how much I wanted to tell myself that the illness hasn't yet taken hold, those signs only confirmed it.

I'm sure I will push through this at some point, it will probably take me a while though. Just as you said, I will give myself that time and then hopefully I will be able to feel stronger.


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