A CRY OF DESPERATION

[amandalilley]

I have reached the end - no more humour, no more fight, no more energy, nothing left.......

16 years I have been raging a battle with Lupus, trying to maintain my dignity, maintain a symbiotic relationship to illness that no-one seems to understand.

16 years of constant pain, being eaten away from the inside out, losing my kidneys, having a transplant, having dialysis, organs routinely being targeted, having 'accidents' (and yes that means exactly what you are thinking), being prodded and poked, pushed and pulled, copious amounts of medication, no medication (whichever worked the best at the time) falling over, constant sickness and nausea, swelling, joint pain, pain when you eat, pain when you don't, a face that looks like I have been on steroids for years (oh! wait i have!).

16 years of being ugly, of feeling ugly, of not reaching my potential or goals because I am always exhausted, unable to find clothes that look nice because my stomach is constantly swollen.

16 years of putting off going on holiday (insurance would be too high), of going and lying on the beach (because the sun causes me to blister) of going on nights out (because I do not want to embarrass my friends if I fall over)

Ultimately 16 years of in and out of hospital just trying to stay one step ahead of this illness.

Where's the positivity I hear you cry - well there is, of course and always has been positive things and people in my life. I work (but now have my daughter as a carer after avoiding the subject for many years, as driving is now very difficult), I have an A & E department that know my first name before they have registered me in, I know all the local paramedics, who have rescued me on many occasions and are brilliant, I have a wonderful job (lots of men with no tops on all summer), wonderful bosses, an excellent Dr, who has been with me since day one, wonderful consultants who do their upmost to help, and of course fantastic family and friends. BUT....

NONE OF THEM - see or know what I go through on a daily basis, the lengths I go to to carry on and hold down some normality to my life, to smile, be nice and appear normal. They don't see the constant pain, the anger, the frustration when it takes me 2 hours to get ready for work or from getting out of bed, the sleepless nights, the pins and needles, the restless leg, the constant exhaustion, the inability to string sentences together, the constant battle to get through a day.

I have become to good at hiding it, as many of you would have done too. I have become like a drug addict or alcoholic who hides the evidence, because I so desperately want to live a normal life.

But there is no cure, there will be, for me, no normal life, however much I try or pretend.

What has made me reach this limit? - the weekend from hell. I have just come out of the hospital, agin, after contracting - wait for it - The noro virus.......

As a person with a transplant (only 2 years old and the only one I have!) 8am Friday morning to past midnight that night of constant throwing up and the dreaded runs was not the best way to start the weekend!

My kidney hurt, my stomach hut and every inch of my Lupus was yelling at me and still is. I discharged myself Saturday night (because I felt very guilty for taking up a bed that someone else deserved) only to find my daughter had contracted it.. I felt awful, I suddenly started to see germs everywhere and felt that this was all my fault for not keeping the house as clean as possible - an irrational thought - yes, but I had an overwhelming feeling of complete and utter fear - I had not only put my new kidney at risk, my daughter and her partner as well, from something that should not have happened in my house...... my house is always clean because of the dialysis and new kidney.

So I cleaned and cleaned and cleaned and cleaned and I carried on cleaning and washing until I was so exhausted I could do no more and then I cried......

That was 5 hours ago and I am still crying............I know that I have reached the ultimate limit - Lupus has won... I give up.

So you see, there is no more, no more humour, no more energy, no more fight, nothing left.

BUT - I will still be at work tomorrow...........................

[MaryF]

Hi there, you need to ring the nearest person outside of your house, who you trust, whether it be a neighbour, (some of them may not know how you feel), and sometimes people are just more than willing to listen and help, and or a relative or friend. We all get vomit bugs no matter how hard we try with cleaning and protection, and they super infectious. You are over wrought and very tired from the disease and the final straw situation. You have to rest and let somebody help you for a couple of days, and also ring your GP and tell them how dreadful you are feeling,

This is very very important. I know how you feel. . I have Systemic Lupus, plus four other things and two ill kids. it does get a bit much. At times I have to give in and go to bed.. BUT and a big BUT here - I only watch things on the television that will make me laugh, it does improve things. Call in those favours from friends you trust, to give yourself a chance to recover. You also need to talk to your GP... (book a double appointment) to see if they can come up with any ideas for help you can access. All the best to you Mary F x

[Karula]

Hi Amandalilley

I am so sorry you are feeling so very low at the moment and no doubt catching the Norovirus has added to your low mood as that alone can upset the system dreadfully.

Lupus is a constant battle and a lot of the time it takes most of our energy as we battle to not let it get the best of us. Please don't look at this time as Lupus winning, try and turn it around and give yourself a little time to recover, look upon it that you are going to sneak up on the Lupus and slowly grab it by the B***s and push it back where it belongs, but to do that, you need to be kind to yourself and let your system recover fully from the Norovirus and please be aware that you must be free from any symptoms of the Norovirus for 48hrs before you can return to work. I know we all like to keep working as that gives us a sense of normality but you will only make yourself feel lower if you are not fully recovered, so if you need time out this week from work, allow yourself to take the time otherwise you will not be doing yourself any favors.

Also please don't think you caught the Norovirus from a dirty house, this is a very strong bug that you could have caught from anywhere or any person who had been in contact with someone who had it. Lupus sufferers have compromised immune systems as you know so we are at greater risk of catching something, so don't fret about it being your house.

MaryF is right, try and talk to someone you trust and let them know how you feel and also have a chat with your Dr, sometimes we think we are conveying exactly how we are dealing with this illness and how it affects us but a lot of the time we do put a smile on our face and paint a slightly brighter picture than what is actually happening to us, so maybe your GP thinks you re coping fairly well, so give them another chance to fully understand how you are feeling and see how the can help.

Whatever you decide to do, don't let Lupus win, let yourself recover and rebuild your strength and then put Lupus back in it's place.

Take care Amandalilley xx

[steadilymovingforward]

Hi Amanda, popped a little message in your inbox xx

[flutterby]

(((Gentle hugs))) you sound like you have such strength and determination, lupus hasn't won, but you need to take some time to recover your strength for the fight. I wouldn't think you should go into work, be gentle on yourself, take care xxx

[Slowmo]

Oh my goodness amandalilley, no wonder you are feeling this way, having norovirus on top of the lupus is bound to get you down.

My SLE seems dormant in comparison to the real difficulties you have endured over the years and I quite simply cannot believe you continue to work. I was diagnosed a couple of years ago and have since gone part time and recently given up work, you clearly have a strong resolve and determination to keep working when you have been so poorly.

Please dont be hard on yourself, I'm sure your house is no dirtier than other people's and certainly wasn't the cause of the norovirus, it is a very virulent infection that you probably contracted due to the compromised immune system.

I hope you are able to see that this is a tough time but you will come through the other side of this.

All the best, and if you dont have a friend to confide in, or to 'let it all out' then keep blogging, and go easy on yourself and take time to rest up and recover.

All the best

Slowmo

[Purpletop]

Oh oh oh, how utterly awful to get so low and so desperate, I don't know how you have been able to cope with all this for so long! I hope you get some respite from it, I don't know how but I just wish it for you. All the very best xx

[Carolha]

I agree with all that has been said and like you I think we all put a brave face on for the world but there comes a time when we all must learn to take a step back. Let others take care of us, you are just as precious as any other person and you must also take care of yourself too. You sound to me as if you have tried to be a super woman who has been there for everyone else, please take the advice above please contact someone you can trust and speak to your doctor. Others will not understand unless you are willing to share, you take care, rest and build your strength back up and that smile will be back soon. Big hug for you xx

[ShannonB]

I just wanted to say I read this and it brought tears to my eyes. I really admire you for how you're dealing with everything you have gone through and for sharing it. I have SLE, Raynauds, Sjogrens - have been in flare 4 weeks and have been in the rheumy this AM in tears and getting steroid injection because I have felt so poorly. I read your report and think I should just get a grip and get on with it. I understand wanting to put on a brave face but YOU have every reason to both complain and feel bad. Take care, find someone to talk to, or just come back to this group and write to us. Sending you strength.

[twist1]

I am lost for words. You have the world on your shoulders and a huge amount of shame. Neither of which you should have. I have had awful symptoms but fortunately so far no kidney problems. The only words I can offer is maybe you should use this time to re-evaluate your life. I have hated what lupus has done to me but sometimes you have to stop fighting and start accepting. Yes we have limitations, yes our bodies need different things than before, but I realised I was a workaholic and lupus has helped me view my life in a different way and make changes.

Look at your life see what you can change that will start to bring some joy back into it.

The irrational thought that your house being dirty caused this is just that, for all you know your daughter brought it into the house it just took longer to develop as they have an immune system, there are hundreds of ways you could have caught this. So stop your obsession right now, and try to stop being so stoic who are you trying to please - it should be you!!!

Use this forum to brainstorm, if you have no fight then lean on us one of use may have a solution to your problem. - have you thought about a steam cleaner for example?

It's just an example but I think you'll understand. Let us think for you and review the answers.

You are not alone xx

[Voutton]

I do hope that all these responds have helped , You have and endured so much with Lupus, It is a most ravaging disease, and one that sorely pushes us to the limits . Do you have a favourite record ? Funny question you may ask but at my very lowest I always played I WillSurvive My son who is now 29 yrs tells me it used to drive him mad.I started playing it over and over and singing to it from when he was about 9 every time I was in that place where lupus was starting to take over I would go to my room switch this on full blast and sing till I was in charge again .Bonkers Eh I agree but it worked for me. I like you continued to work until about 10 yrs ago when it was just not feasible ,but I still have my record and I can honestly say that these days I don't need it quite as often even being hit with more problems, I wonder now if having more time for me has helped and I don't feel stretched in so many directions .I can only hope that you find a way to continue coping as you admirably have been doing. Maybe a nice pamper day It doesn't need to cost a lot .You could have one in the house ,bring in some friends , put on funny coloured face masks take pic massage hands have a bite to eat. I know I'm rambling now just wishing I could offer you more help. Take care You Will Survive PS I'm not religious but I know a bible saying Get Behind Me Satan Same goes GET BEHIND ME LUPUS X

[mstr in reply to Voutton]

Good idea about a song to inspire Voutton.....I am the same with the song.....You raise me up so I can climb on mountains. Sometimes I have thought of my husband as he has given me strength and been my confidante and at other times I have thought of it in religious terms. xx

[rlupus]

As already stated above your not alone , you need to see your GP as soon as possible to get some help and support , i have had this for over 23 years and i get days were i think i can not do this anymore , But as soon as i rest for a few days i decide to fight back,I think you should be signed of work for a few days to try and recover its hard but your body is going through so much,

Take care hope you feel better soon xx

[Jo883]

Dig deep, I can't say anymore then what has been said above already, there's only one way to go from here and that's up, rest rest rest, call in all yr favours xxx I feel that whatever I write seems somehow inadequate but my motivation would be to stick to fingers up at lupus and claw my way back through grim determination - you r a fighter, just a tired fighter, Batton down the hatches, hang tight and put yr blinkers on. We're all routing for u honey. I'm sending you love all the love and light I can muster xxxxxxxxxxx

[lupydragon]

Sending masive cyber hugs !!! to a very strong determind lady, who has and will continue to fight against the wolves. Give yourself time just for you and build yourself up again ! Look after yourself and take care XXXXXXXXX

[lizzidrippin]

Like lupydragon lots of cyber hugs!!

To date you've been a superwoman...

Stop with all the recriminations... You will keep fighting it's who you are. You're in pain, over tired, the n.virus hits out of the blue it's not your fault.

Time for you to rest, take as long as it takes. Hang up that superwoman costume for a while....you'll be back.

Typing this it all sounds so trite, but it comes from the heart. Take care xxxxxxx

[Clare1975]

Just to say like so many others to not give up. Be kind on yourself and rest as much as possible x sending lots of love x

[yvetteh]

Being in hell is not fun I've been there, Do not give up wake up and find a new day. When I'm low I play the secret which helps it;s a short film which is inspiring. I'm someone who has had over 25 sets of transfusions at different hospitals over the years. The turning point for me was when my daughter was about 3 mths old I had a foot infected like an elephant it was severely swollen they thought i had gangreen (3mth hospital stint) then 26 infections that year then finally purple blotches all over the body, blood poisning, I raced to my specialist crying he got annoyed with me and said get used to be sick you must! I got so angry smashed every pill bottle i could find spent more time in hospital still angry, but i was not going to be sick. I lived to tell the tale because i never gave in, not ever.! I had more miscarriages than most women were talking double figures, but the way to look at lupus is, it;s not cancer and it's ugly yes! I often spasm through out the night and wake up feeling exhausted, suff er with various lupus flare ups I'm lucky I have my kidneys, but I look for something other than pain to divert my energy to writing or doing charity work giving to others with time anything to occupy my day than pain, not every day is perfect over mth i had a week of migranes, infections, fever, jerks and others i forgot! lupus is the mushroom in the dark it's hard for people to enter our bodies sometimes its scary but hey were here and communicating, laugh a little, love a little, watch a funny movie, laughter improves your soul and makes life so much simpler much love. it will get better.

[baaramewe]

I am so sorry that you feel so ill, I understand totally. I don't have the disease as badly as you but I feel at the end of my rope at the moment because I look so well and feel so crap. My husband is not very supportive and I sit at home looking at how dirty the house is getting.I had to give up my job as a nurse because it was too strenuous and like you my kids have grown up with me lying on the settee. I hate the sight of my overweight body, the fact that I can't do things without making my health worse. My counsellor said it is important to have a good cry and wallow in how bad you feel, to let it out, which none of us are good at.

I hope you feel a bit better about yourself soon, you are amazing because unlike most people, you survive with all your problems but we all need someone to remind us of that.

Love and hugs xx

[markat561]

dear Amanda,I know only to well what you are going through my lovelly wife Kathleen went through very simeller things but on the 1st may 2013 she lost here fight, went to sleep peacefully,now she has no more pain she fought till the end i love herbut i do not have to watch here suffer any more.Martin xx

[amandalilley]

To everyone single one of you who took the time and trouble to read my letter, I am truly moved and honoured.

I really have no words for the love and hope that you have all given me since posting, you all have no idea the impact that such kind words of encouragement have had on me and I am grateful.

Today is the first day I have logged back on, I was so afraid of what everyone would think, that I was mad or just stupid for letting such a thing push me to the end of my strength, but you have all given that back to me, I never realised people would actually care so much, I felt so alone and unable to pretend anymore and that is so unlike me.

I am still a little poorly but managing to move forward and to be honest a tornado killing 20 children puts things into perspective but does not make me any less important than the next person.

So... I will start again, with the strength and conviction of all that you have freely given, I am truly thankful and I WILL START AGAIN, I will win, I always do, every day - I win - You Win- but without each other we are nowhere.

so as a HUGE thank you to all of you, I would like to send as many hugs and love and luck and happiness as I can give freely as you have given me.

If anyone suddenly gets as low as I have done, is tipped over by something as small as dropping the kettle or as large as being diagnosed, I will be here for all of you and I will return the listening and talking that you all kindly done for me. Because doctors, councillors and all the consultants in the world can not be as good as you guys!!!! Yes, my humour is on the mend too......

XXX

[MaryF in reply to amandalilley]

Good on you! Mary F x

[eunidarling in reply to amandalilley]

Dear Amanda

You are such an inspiration. Writing about what you are going through will help so many of us. Lupus can really make you feel low. I was waiting for the sun to shine today to put some fizz in my tired limbs but reading your above words has really helped. I am glad you feel much better too.

Take care and thanks

[juneybells]

Well done for coming through such a bad time, you have more strength than you realise but you're not super woman. Just take one day at a time as we all do and you will win!

Sending you love and hugs