My Stalker - lupus

Exhaustion, pins and needles, nausea, sickness, diarrhoea, Costrochronditis, lupus nephritis in both kidneys, loss of peripheral vision, memory loss, kidney transplsnt, vertigo, restless leg syndrome, headaches, swollen stomach, severe kidney pain in transplanted kidney, facial rash, body rash, fibromyalgia, numbness, lupus phycosis, trapped nerves, mrsa (caught at local hospital) clawed hands, swollen neck, shoulders, feet and face, weight gain, weight loss, menengitis, septicima, inability to concentrate, ibs, me symptoms, constant brusing, light sensitivity, food allergies, tooth loss, hair loss, month ulcers, virginal rashes and swellings, loss of bowel and urine contol, leg and feet cramps, headaches, joint pain, constant urine infections, blurred vision, no longer able to walk, drive or work, but most of all......


20 years with this illness, tried all drugs, threw all drugs out, tried new drugs, changed diet, changed exercises, changed consultants (even tried guys, they said they didnt understand why mine was getting worse instead of better as i got older...), dont smoke or dink and even gave up the occssional weed, meditation, hypnotherapy, acupuncture (never again), hydrotherapy, councillors (never again, aragant, nothing in my childhood made me get lupus, I was just unlucky) and I am too tired to party.. lol am 50 this year.

My conclusion.......Lupus is a ******* of an illness and whatever you do to try an alliviate the symptoms and pain, IT WILL THROW SOMETHING ELSE AT YOU..

Example: had urine infection since October, now resistant to 2 antibiotics and am on my third, at same time got up out of my chair to do my daily exercises only to be presented with the most excruciating rib pain, resulting in a trapped nerve in my chest wall, resulting further, in a huge Costrochronditis attack, at same time, which lasted 3 hours... if it was not so desperately upsetting, it would be funny.....

I now do not go to a rhumatologist, do not ask for help from Guys (called their advice line, was told to up my pred and see my local gp, 24 hours later I was admitted with a tempreture of 40.8 and menigitis!) or a Lupus consultant in Cornwall (oh wait, we dont have one, the nearest is Exeter....), do not visit the local a and e (they have no idea how to help and despite a careplan in place, think they know my body better than me), in fact the only person i trust after 20 years, is the one person who has seen how this dibiliatating illness effects me, other than myself, is my local gp, who has been with me since day 1. Thank you dr dommett.

I am tired of being a guinea pig, tired of being a revolving door to the medical system, tired of being brave, tired if smiling through the pain, tired of being proud when i manage to dress myself, tired of the inadequate help available for this illness, just because the so called professionals cannot see or do not understand how it can effect so many people in so many different ways and still kill people. Because they have never experienced it, they think they know better and if they dont know they wont admit they dont know, they just try and throw something else at the problem or best of all take more blood, despite the pain it causes.

I AM TIRED OF BEING IN PAIN and having to explain why I am in pain.

I am lucky, yes lucky, despite it trying to kill me on numerous occasions, i am still here. Although believe me, there are days, like today when death seems a better option than living with it.

I have created a regime for myself that keeps me going.

5mg of prednisone

Oxycodine for breakthrough pain with a sublingual abstral (when gets above 8), plus the use of a spray, but to be honest the spray is a last result, it tends to make my head spin, have enough of that with the vertigo........

Paracetomal, 4 times a day

Meditation with relaxation, once a day

Gentle exercise in and out of a hydrotherapy pool, when i am able, together with a little walking when my legs, with sticks alliow.

Asprin, once a day

My anti rejection drugs for the transplant

I take NO other drugs for the Lupus because for me, none have worked and I have tried them all, the best was gabapentin - the hallucinations were literally out of this world, one being....demanded to be taken shopping, naked at 3am.....because the aliens in my fridge wanted milk......very funny to my daughter who was with me at the time and has never let me forget

The only time I ask for help now is if the Costrochronditis hits a level 10, i ask for a paramdic have intravenouse paracetomol and gas and air, until it passes and stay at home....

Other than that, i cry, shout, scream, hit the pillow, eat ice cream, eat chocolate or anything else that takes my fancy, play scrabble, play heyday, collect toys, make frames, eat cake, enjoy the good hours thst i may be blessed with each day and deal with each thing it throws at me, one thing at a time. TODAY IS THE VERY BAD DAY AT THE END OF A VERY BAD TWO WEEKS OF CONSTANT LUPUS PAIN at level 9 and above. Hense the need to write.

Yes, i am tired, angry, fustrated, ***** off, hurt, in pain but after 20 years of mis diagnosisi (even the trapped nerve was diagnosed wrong as a new Costrochronditis site by paramedics), i trust myself and myself alone.

The establishment, friends, family, aquaintances, the general public WILL NEVER UNDERSTAND WHAT YOU ARE GOING THROUGH, because you are all unique, wonderful individuals who have the mis fortune of having one of the most misdiagnosed, misunderstood illnesses around. Other lupies can help and offer advice, but they are all coming from a different perspective. It may or may not help, but at least they are available and here for you regardless and do not judge...... i have been admitted at a and e for a serious infection only to be signed at by the dr on the ward and the words.... back again, what is it this time..........hense i no longer ask for help.

If I had to have an illnesses, i would have preferred cancer, at least there is a START, MIDDLE AND END, whatever that end may be................


May your individual symptoms, pain and struggle ease and may the universe bless all of you with some form of relief, relief is something i have yet to be blessed with, but i do not begrudge anyone who has that joy.

Hugs are always welcome, just be

Thank you for allowing me to write, thank you for reading and feel free to write something yourselves.

Love and understanding to all lupies.

Mandy. Xxxxxxx

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22 Replies

  • Wow Mandy, you make my symptoms sound like a walk in the park.

    I feel for you.

    Sending hugs


  • Hi Alison, I am sorry, that was not my intention. No ones symptoms are a walk in the park.

    Lupus is a ****, whatever your symptoms they are unique to you, distressing to you and painful to you.

    I just wanted people to realise that this illness has no respect for age, race, beauty or sex and however it effects you, there are lupies around the world that understand, despite how the establishment view you.

    May your day be filled with minuets of joy to help you through. X

  • Thanks. I understand completely

    Yours too

    A x

  • That was so beautifully written, it took my breath away! So right in all you say, so frustrating and enraging at the same time. It is a sobering thought that no matter what, this is not getting better. I've noticed that each time I think that I finally see the end of the tunnel, something else comes along and knocks my hope away.

    I understand that sometimes death feels like a more acceptable option. And the desolation at the irrelevance of medicine in the face of this disease.

    My heart sunk when I read of the diet, exercise etc not making much of a difference.

    I loved the cake eating.

    I feel ill equipped to comfort you in any way, you've been through everything already. I just want to thank you for sharing this, it's invaluable.

  • Gentle hugs as a lupus friend.

    Gentle hugs because you are struggling.

    Gentle hugs because you have written what many of us feel and have experienced.

    Gentle hugs because there is danged all else to do.

  • Oh dearest Mandy, what can I say this is possibly one of the most powerful admissions I have read. I think you should write a book on what you have been through and are still going through but I doubt you have the energy to do that. If we all lived near we would come and comfort you, give you that gentle hug. Yes some have not gone through all that you have and all that you are but we understand you, the unfortunate thing is we can only support you we can not make it better. I personally believe that I can cope since talking to the guys and girls on this forum several have given me advice which has been so invaluable I think I may have given up if not. Keep talking to us Mandy please. Take care Nx

  • Hugs and prayers heading your way. I understand as I have the same symptoms. Yes it sux. My boyfriend and brother live with me. If I yell out from the pain they scream at me "what did you do now?". They don't get it.

    Please just hold on. I'm hopeful that something will come along thayt will help. I go to my Rheumatologist this week for a ruptured Achilles tendon. He's also an integrated Dr.

    Take care,


  • I know how ya feel, everytime you thing things will get better something else pops up. Haha we have to laugh or we would have to give up. My next one is a triple by pass operation. Had cervical spine fused last October. Just wonder what next. All we can do is smile and carry on. Love and hugs. Xx

  • Good luck with the op!

  • Thanks.

  • May your strength carry you through this amazing operation. And all my love, hugs and universal good wishes for the upcoming challenges. X

  • Thank you. And hugs and a good life to you. X

  • All I can offer is gentle hugs with masses of love and understanding xxx

  • Thanks.

  • Mandy, you have been so candid with your post, and I applaud you for it, very very brave. Unimaginable pain, and ever changing symptoms is a lot for a person to deal with, whilst not on the same level as your story, I am in a terrible flare, worst it has been in a very long while, not helped by the horror of 35 weeks and counting of daily Cluster Headaches.

    I will send you a very gentle hug, and hope you catch a break very soon.

  • Am sending you hugs, love, peace and happiness with the hope that the universe and your strength, courage and determination will allow you to see the end of such an awful flare. X

  • Hi gazzasoens, I just want to wish you all the very best with your op, we are all thinking of you, lots of love and hugs. Nx

  • Hi Lupuskaren, wow I can not even begin to imagine what hell you are going through, is that right 35 days straight with cluster headaches. I know we are supporting Mandy and I still read her post over and over and thank myself lucky but wish I could Help her, but see gazzasoens and Lupuskaren replies I had to let you know that I am thinking of you both. cluster headaches they are debilitating, wonder if they have ever prescribed Amitriptyline. I have heard that iron deficiency can lead to some headaches, but cluster are not some headaches. Take care all Nx

  • Bless you Mandy, very emotional post & as Noonoo says, you should write a book. Well maybe record it & get someone else to type it up for you.

    Can't begin to imagine what you are going through but I do know from what you have said truelly explains the pain, anguish & sheer frustration come & hits you. You are very strong and I really admire you and feel you.

    I understand completely with trusting nhs they haven't got a clue.

    They tend to specialise in certain thing, like pedetrician or elderly etc. So when you go with Lupus, you will know more than they do.

    I have just munched my way through slices of birthday cake, no ones B/d it was just half price in Asda lol. Never stop asking for help honey, when they say "back again" just tell them. " OH no, not you again" ! think it's something they say to everyone than returns. I thinks it's a form of endearment, not that it makes it right for them to say what they did.

    They should have it in their training, things they should not say to patients, like years ago when ppl. Would say , "ok love" or darling. It's wrong and they shouldn't say it.

    Anyway Mandy I pray you get some relief from all the pain you are going through and sending you gentle hugs

    Peace, luv n light x


  • Birthday cake when its no ones birthday.... lol, my kind of friend.... when can i come for tea... much love. X

    And thank you for the compliment re my posts a book i am not nearly intelligent enough for, but if my posts bring joy, make people laugh, think, cry, i am truly honoured and happy with just posting. 😃

  • Thank you for your post. I agree although I do not suffer anywhere near as badly as you do, whatever, a persons level of pain or symptoms its the endlessness and lack of respite from it. It is difficult to describe and once you list ,as you have done, to the outsider it becomes unbelievable and people shut off. Its too much for a non sufferer to take in or medic to process. We use good days and then wait because the bad days next.

    As far as bedside manner goes, as an exnurse it makes furious. My 85 year old mum loves that her gp calls her Ivy. She says it proves he knows her. I think in hospital doctor rotation also doesn't help.

    All my best wishes.

  • Mandy,

    I have to say I really do understand and wish I was close that I could give you a light hug, here is an air hug sent to you with tons of love and admiration!  You have a great underlying outlook and I do know how that can be beat down day by day and painful days and nights!!

    I feel the same way about the pain and lost feeling and have recently decided to **** with LUPUS and the fact it killed my sister and is trying to kill me and so many others..I refuse to let it define us and I will see my grandchildren...I may get to the point I can't pick them up but for example when my 6 month old grand daughter looks into my eyes its like seeing my sister always smiling back at me and laughing and hugging me, that I know I can't give up yet, my sister wouldn't let me and she would kick my butt when I see her again if I didn't try as hard as I could to enjoy what time I have left!!  I am very glad that you know that we are all her for you!  Please send me an email if you ever want to vent.....I am here for now :)

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