Hair, scarring and this horrid curse of a disease. :O(

There is somebody out there (I know) who will understand how it feels to stare at yourself in the bathroom mirror and see someone looking back at you that you don't even recognise.

I am feeling very down at the moment because I have lost even more hair, my eyebrows have gone completely and every morning after my shower I spend an extra 5 mins or more in the bathroom in tears so knowbody knows I am upset. Then I throw the hair volumiser across the bathroom floor or against the wall and start to get ready for the day. I pick it up, try not to look at myself, put it back on and hide my image from my self and feel better again. When I do eventually catch sight of myself I want to rip it back off again but dead what lies beneath it more.

My face has blotches of red and I feel a real freak.

I have written this because there isn't a soul I know who can understand how I feel and even if there isn't anyone out there who does, then I have got it out of my system for the night by writing to you all You don't know me so I feel safe telling you how I feel.

I am going through a bad phase at present after having a bit of a flare and I am a bit fed up with it all.

I usually try not to let it get at me but I am losing the battle at the moment.

I hate Lupus and wonder how on earth I aquired it.

I know there are many of you who are much worse off than I am and I am sorry for being so self indulgent.

I so wish you all well and thank you for taking the time to read my dreary blog!

x x x x x x x

22 Replies

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  • hi lupyluspus.im feeling the same way,my hairs falling out,im on 40mg of steroids,and im bloated like a fat ballon,im seventeen stone,an like you look in the mirror an cry my eyes out..what a bitch lupus really is.when i read your blog ,my heart gone out to you ..we have to stay strong,and not let the bastard get us.i used to moan of a spot or my hair not going quite the rightway..now i wish i was the old jackie i used to be ..all we can do is hope we get back to that place were we were happy and contented looking at our image..you take care and please look after yourself..lots of love philsick xxxxx

  • Hi Lupylupus, I couldn't leave the house without replying to your blog. I soooooo know how you feel. I have felt like this for many years since catching a glimpse of myself once in a full length mirror and something switched off in my head. I know people may think we should love ourselves anyway but let them go through what we're going through and see if it is that easy.

    If it's any consolation you do learn to live with it and things do get better. One of my coping mechanisms is not to look in the mirror when I know I am not looking my best, I cover all full length mirrors so as not to catch myself off guard and believe it when people say you look lovely. One day you will look in the mirror and think, 'I'm not so bad after all'. I wish you all the very best and promise things will get better xxxxxxxxxxxxxxxxx

  • hi when i was first told i had lupus over 10 years ago i was slim now nearly 18 stone mostly down to steriods but without them my body wont function i used to cry all the time .try and focus on the good things inn your life .im lucky to have a gem of a husband .main thing dont bottle things up vent to us we understand x

  • I completely understand although I luckily don't maybe have as many problems as you. About seven years ago I was a Personal Trainer, I obviously worked out A LOT and taught various classes, circuits, spinning, Abs blast and Pilates.... Always used fake tan always had painted nails & matching toe nails, ha!! But the one thing I longed for was to be a mum!!

    After our first IVF programme I was pregnant with twins... Could not believe our luck, had always wanted twins, I was ecstatic!!! Sadly they died at 25 weeks, my precious babies were stillborn. We called them Ryan & Amber, now they are my angels!!!

    My life was shattered!

    Eventually we went on to try again with a 2nd IVF thinking odds were against us and we'd probably need another 2 or 3 attempts before I would get pregnant again BUT luckily I did!! It was a very scary pregnancy and they found out about the APS (my sticky blood) so managed to get to 34 weeks but had to have emergency operation & C section but our miracle little boy was fine called Brendan!!! I was in intensive care for 2 weeks.

    Now I love him with ALL my heart but have no energy to run or play with him I love holding & cuddling him but 6 year olds need more physical play!!! I struggle to walk whilst he scooters ahead of me!! And I too physically don't recognise myself; now I'm bloate, very think hair, can't afford hairdresser because I don't work enough hours due to terrible fatigue!! Have raised red lumps, dry, crape paper type skin that's all saggy, bruises covering my arms & legs and scarring from old bruises and sun damaged skin!! I used to like mirrors now I HATE them!! And my gorgeous son deserves more!!! I do UNDERSTAND, you're not alone and you're aloud to be very, very angry... WE ARE STILL HUMAN!!! Sending you a big hug!! Xx

  • Ps. Forgot to say also have SLE, was only diagnosed when my son was 3!! Take care peeps x

  • This soul knows exactly how you feel! I had severe discoid lupus for quite a long time so I am right there with you. All you have said is completely the way I would have put it. The bathroom mirror becomes something you would rather avoid I know. It will burn itself out but in the meantime have you thought of camouflage make up? Baby shampoo is gentle and will "fluff" up your hair too. If the rash itches you could try a cool damp flannel which calms it down. I am so sorry and hope it improves soon. Thinking of you x

  • im so sad reading this, im crying. i was a masterstylist for 17 years and my hair has always been my pride, i had a big bush of black curly hair wich i thought would always be there. i have sle and raynauds and i have a thin pony tail now, im to scared to have my hair washed cause i cant wash it myself anymore. with every wash theres a new load falling out. i have a few bold patches and it scares me. i never couldve imagined this. i had bells paulsey on my left side of my face when my son died. my left side was parralised and the damage left after it "healed" was that my mouth pulls like someone that had a stroke. i bit myself constantly. i dnt understand why lupus has to be so cruel. im trying to take it day by day. (((((hugs for all))))

  • I certainly know how you feel! I have lupus nephritis and my doctors always said that was the worst part of my lupus, but for me it was when my hair started falling out and my face was so bloated that I couldn't see my armpit to shave them! Maybe it sounds trite/vain,whatever, for me it was devastating. You'll notice that I'm speaking in the past tense, no my lupus is not cured but my hair has grown back, thinner than before but it's there and I'm down to just 2mg Prednisolone a day and can shave those armpits with ease :) What I'm trying to say is things can get better, 9 years ago I thought my life was over, but it's not it's just different and I'm now even more determined to enjoy it. You are not alone, there is lots of us.

  • Hi Lupylupus and everyone else! I was diagnosed in November so not as long as everyone else and my biggest everyday problem is my itchy scalp, fortunately at the moment my hair isnt falling out as my Hydrocloxychlorine seems to be doing the job, but on top of that I get terrible rashes / spots all over my front and back, I have terrible scars and go on my holidays in 4 weeks.... I am not gonna look to hot in a bikini, but I get my hubby to check my back for me each day and my doctor gave me some antibiotic rub and it seems to help a little.... It is not going to stop me from doing the things I love and like I said in previous posts, I will take all of the precautions I need to in order to do the things I love! I know i probably havent seen the worst yet but I look at the pussy spots all over me everyday and want to cry, which I could do but it makes me feel worse, I know how hard this is but guys we cannot let this god awlful disease beat us!!!! I like you hester had a bells palsy whilst I was waiting for my diagnosis, it all became a bit to much, I also have raynauds, I get an infected head, loose my hair, feel like death some mornings, mouth ulcers etc etc but now I have the diagnosis I wont let it beat me, even if I can only do a little I will make sure I do it, because if I give up so will my body.... Please everyone I know its hard but dont let this disease get you to down, just smile when you wake in the morning.... it will give you a brighter outlook to your day..... :-)

  • I know just how you feel as I am going through a bad patch too.I will never accept the 18 stone me and I hate mirrors too. It's no good other well meaning people saying that you can't help it because you still have to look at the ugly you. I sympathise with you and it IS good to get it off your chest, we all understand what your going through and I send love and hugs xx

  • Hi honey. Please don't feel like you're being selfish because you certainly arnt. This illnessn ( I have SLE), lupus is a most unforgiving illness. Half of my hair has gone, I have big red blotches on my face, chest and arms at the moment. I'm covered in bruises and walk lilke an 80 year old not the 42 years that I am. I had a lupus induced heart attack in january and had to have a stent fitted. I too have bloated dramatically, I've put on over 5 stones because of steroids and lack of exercise due to pain. I agree unless you have lupus you can't begin to understand how we feel. I hope you feel better now you've vented sometimes speaking to other lupies helps. A big hug is on the way but try to concentrate on the happier days when you're flare free. X

  • I am sat here welling up with all your words, I am a mother of a 15 year old daughter with SLE and Lupus Nephritis level 4. due to all the medication and the lupus my daughter has lost most of her hair. We sat there over the weekend with handfuls of hair just coming out and tears rolling down her face and me feeling helpless. We have just got over a skin flare up which got infected causing her to be in hospital for a week. Her face, scalp and ears was one big scab.

    I am sending lots of hugs to all of you and strength to get through this.......

  • I too, can identify with what you say. It didn't help when, a few years ago, just after I'd got out of hospital,having suffered muscular apathy and been confined to a wheelchair, and chemotherapy which caused total hair loss, I was beaten up by a thug who didn't like how I looked. I've been having counselling ever since. I don't look any better, but I've learned coping techniques. I use complementary remedies such as Bach essences (Holly) to cope with the anger I feel and meditation to help with stress. Last week, I felt so angry that I cut off my ponytail because there was practically nothing of it. I hate the fact that my hair is shorter, but I've made up some more Remedy (Holly) and the anger has subsided. Surrounding myself with wonderful friends and family who make me feel good despite the fact that I look like Quasimodo also helps. It is important to fill your life with things that need a lot of focus; reading, watching uplifting films, theatre and comedy or just spending time with good people who make you laugh.

    As for the lupus itself, I visualise "her" as a beautiful, but damaged wolf, neglected, ill-treated and confined to a cage; she has needs, but left unattended, she will howl until those needs are met. The best we can do is feed her when she needs it ( us, that is!) allow her time to rest and when she's asleep, the lupus is lying dormant. By learning to see that beautiful, but damaged beast it teaches me to be compassionate towards myself, as I might be if I saw a badly treated animal in need. Treat your lupus with kindness and she won't attack you.

  • Dear Everyone,

    I am both touched and comforted by all your kindness.

    Thank you so very much for sharing all your experiences and trying to drag me out of this depressed state of mind.

    You have brought me to tears again with all your experiences, but this time for you all and not for myself.

    I was at a low ebb when I wrote my blog last night and today I feel somewhat better. I know that you are all out there somewhere and fully understand what it is like to have this disease.

    Although my family is very understanding they cannot possibly understand the way you all do and I thank you all for this with the bottom of my heart.

    I try to hide a lot of how I feel as I don't think it is fair to keep complaining to my family so

    So thank you to you all. x x x x x x x x x

  • Hi Lupylupus

    I can honestly say i thought you were writing about me! Its horrible to feel so ugly and not recognise yourself in the mirror. The depression is so deep it is hard to understandyourself let alone anyone else. BUT there are so many of us out there that we can support each other and not feel so alone, its good to vent it really helps.

    My health authority has offered me two wigs a year to help with things. but i cant get one to fit. .

    Just remember, everyone on this site is great at being so supportive and encouraging. keep you chin up- be proud of who you are and vent whenever you feel like.

    Sending loads of hugs and good caring vibes xx

  • An additional thank you to Bodicea.

    I am so lucky to have such amazing support and blog friends, and I am heare to support you all too when you need it.

    Lets hope that one day they will find a way to mend us all!!!

    Have a lovely day and thank you again. x x x x x x x

  • Hi, so glad you have had the support when you need this. Sending you my thoughts and best wishes. You are still YOU, no one can take away your spirit and strength of character, stay strong xx

  • Hi Mstr,

    I have read your kind message and 'thank you.'

    I think we should all share all the good wishes that have come in response to my moan last night.

    If good wishes had healing properties we would all be much better! In fact I think they have made me feel better anyway.

    Thank you again to Mstr and everyone who has given their precious time to write to me.

    x x x x

  • Hi there

    I also have lupus/MCTD and Sjorens syndrome. I am 61 and was diagnosed some 20 years ago although i think this has been with me all my life. I am not on steroids now but am almost 18stone and feel cumbersome, uncomfortable and always in pain. Last week I was totally humiliated when i sat on a folding chair at a restaurant with my family there, and it completely smashed. I could hear people laughing and i forced myself to do that also but went to the bathroom in tears and very sore. I get so tired and yet cant sleep a full night and finding it more difficult to have fun because of this and my size, especially with my grandchildren. Money is so short and think i am gong to lose my home as i have nothing left to live on by the time i meet my bills . I feel almost suicidal some days and keep telling myself God loves me.

    i understand and send my love and prayers

  • Dear Annlister,

    You have touched my heart with your message, and I truly wish I could be there with you to support and help you.

    I am so grateful to you in spite of your all your troubles that you have taken the time to think about me when you are feeling so sad and upset.

    The bathroom is indeed a sanctury for all of us to escape to and to release our tears, but at least we all have an alternative with this site, and it feels very private because none of us know each other, and nobody we know reads our blogs. We can freely express our feelings.

    I think it will be helpful to you if you could express how you feel more often and gather the support we can all offer you. Together we can be stronger as we all understand better than anyone else we know personally.

    It has helped me to know that you are all out there somewhere offering your kindness and understanding.

    You must not feel alone and reach for the keyboard when you feel you need to.

    I am sure God does love you and it sounds like you have a nice family who love you too.

    I fully understand about the sleeping problems as I can stay awake for hours at a time and the next day I am fit for nothing. It was worse when I was working as I had a very responsible and demanding job in the health service, and I was totally wiped out by the time I got home. I find it helps if I listen to a phone-in program as it takes my mind off not sleeping.

    The medication we take can badly effect the way we sleep and I am sure that is the main cause for it. Then of course we lie there and think negative thoughts. That is why the radio seems to help.

    I have retired now and find it easier as I can at least lay in sometimes.

    Please be assured that I have you strongly in my thoughts and care and undertand how you feel.

    My grandchildren seem to take me for what I am and love stories and making things. I adore them and they brighten my life. You just can't let yourself get down when they are around.

    Take care Annlister and be strong as you are very important and obvioulsy caring.

    Thank yo once more for your message and to everyone else who sent a message to me.

    Margaret

    x x x x x x x x x x x

  • hello dear.

    I do know hw u feel, my hair has not started to fall off yet but i know it will soon start cos am on the second phase of cyclo. i will pray for you to get better and also feel better about yourself. Are u christain? if u are take refuge in ur bible and prayer books.

    Take care.

    ije

  • Thank you very much lje. x x

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