My Lupus story, The other side affect: Soul searching.

[Sandhu]

I wanted to share my story because I have found strength from reading others.

I am 27 and was diagnosed with Lupus 6 months ago after months of not knowing why I felt the way I did. I had a 6 months on the go, my mother got very ill, I got married, moved house. I put my tiredness down to that but after a couple of months, I was still just so damn tired.

It was my old manager who made a comment of “you’ve been to the doctors more in the last few months then I ever had in my life”. I then made another appointment with my GP to ask him what could be wrong. Really I wanted to prove a point that there was something wrong because I had nothing to say for why I kept getting ill which meant time off work.

I went to get my blood tests done then got called back two days later for further tests. I then get a call from the hospital asking me to come in asap. Turns out my white blood cell count and platelets where ridiculously low, so much so that I was almost facing a bone marrow test. The hematologist started asking me a series of questions, I knew where he was going with it, it had only been a few years since my 25 year old friend died of leukemia but I thank god, my cells started to rise again and after careful monitoring the horrific things it could have been were ruled out. Talk about an emotional roller coaster!

But I was still undiagnosed, newly married and felt on another planet. I was stressed, tired, unmotivated. Not knowing what it was I had the usual *loving* family telling me what I should be doing. You need to eat right, you don’t eat enough. I eat like a horse, always have done. You need to rest.. but I do! Take vitamins! For what? I don’t know what’s wrong!

I was off work for a month which lead for my employers asking me to go see an OT. I have to say, that was the best thing that I could have done. The first appointment, I was still undiagnosed, he couldn’t help much but he gave me the chance to understand what they are there for. I’ve seen him again since and found that it has been something that has given me some emotional support.

In October, I was sent to see a rheumatologist. I really just thought, here we go, I’m being sent to another “ologist”. He sat me down, asked me a few questions about what symptoms I’ve had, I told him. He looked at my blood records and tells me that I have Lupus. Lupus? What’s Lupus?

He explains to me what it is. Tells me that I will be on medication, every day, for most likely many years. We spoke a little. At first I didn’t have any questions, I didn’t know what it was so what do you ask? I was about to leave the room but then I thought to myself, hold on, what does this mean to me? I turned around and asked, so what if I get pregnant?

Bless him, he sat me down again and talked through everything. I drove to work after my appointment, that had to be the worst drive ever. I started realising, I now have a medical condition. I was feeling so sorry for myself. I also started worrying about how this was going to make the people around me feel. I felt like I was letting them down with something I have no control over. My mum was readjusting her life after having a stroke I hated myself for having to tell her this.

I was newly married and felt like I’ve just landed a massive burden on my new family.

The next few months have gone by, tired. The OT had helped with some adjustments but I refused to let it go further then coming in a little later then 9am. I made sure that if I came in late, I would work later. Initially I was given the opportunity to work from home when I was down but this soon changed when work said that it wasn’t feasible. When that changed, I felt defeated. I understand why, if I am sick, I’m sick, I should be off sick and not worrying about work.

I’ve been so confused about what was happening with me and so stressed that my life has changed. I didn’t know what was normal for someone who had lupus, I didn’t know what was bad and what was really bad. When you’re not sure yourself, how are you supposed to explain it to someone else?

They can’t understand really how you feel and it's even harder to explain.

Over Christmas, I am sure I was having another flair. Tried speaking to the doctor and their response was “do you want a sick note?” NO, that’s not what I want! Tell me if I am having a flair, is this what a flair is? I couldn’t stop wanting to sleep.

It got me bad, I was really down in the dumps about the way I was feeling. I hated that things were getting to this. I am a very active person, I like to keep busy, I was miss responsible, the reliable one, I was a super woman. I just wasn’t that person any more. I cringe when I get asked to do something that requires me to go out of my way, I get in a strop if I have to go somewhere I don’t want to go.

So frustrated with myself, I just didn’t have the capacity to entertain anything other than getting through each day.

Three weeks ago, I went for a review with the rheumatologist and he advised me to double the medication to 400mg to speed the reaction up. I started the double dosage and felt so sick straight away, it was too much for me to handle. Again, I didn’t know if this was normal, did I have to ride out the side effects? Did I need to stop/reduce/take the two at different times?

Looking for answers, I came across this site. I can’t tell you how I’ve spent hours reading almost everything and for the first time, I feel like I am not alone. That it’s normal to want to just have a nap in the middle of the day sometimes and it’s normal to feel so frustrated because your life has changed.

I have read a lot of sadder things about how badly this has affect some. Having to give up work, not being able to get any support and the hardest, being affected by Lupus more severely then I.

I hope for all those affected, things get better and your will get's stronger. As much as it breaks me, and that it does, I have to make sure that this doesn’t stop me from living my life.

Saying that things are different, I might have to take a step back and redefine what it means to be Super woman. If my mum can do it, so can I. She's my superwoman, stroke didn't stop her and lupus won't stop me.

I've had to re-evaluate what I can do and for my sanity appreciate what I can't do. I've had to re look at what I should be proud of and what I shouldn't be ashamed of. Hardest of all I've had to learn to say "No" and not feel bad about it.

With any bad time, I had to pluck up that courage that I know is in me and find my strength all over again.

I am lucky I have a support system around me. I give my husband the biggest respect of all, our first year of marriage and he’s spent it all keeping his wife on a pedestal that at times she doesn’t feel like she’s worthy of standing on.

We all have to remember, life is now different but we still have one.

Thanks for taking time to read this and sorry if I bored you!

[helen3d]

you sound like an amazing couragous young lady good for you i to have the attitude this will not beat me and have probarly gone through all the emotions you have i hope everything settle down for you

take care xx

[MandieR]

Hi Sandhu,

I must say that every word that you wrote could quite easily have been written and experienced by more than half of us here, me included!!!

I still, 8 years on, struggle with the choices I have been forced to make, the feelings of self pity, the inability to work, the inability to even stay awake at times lol

BUT we are all still here, all still able to laugh but most importantly we are all still able and more than willing to support each other, and with empathy

Good luck in everything you do, you are never alone now and dont forget that. Hope your Mum is continuing to recover, its a hard slog i know as i had a couple of strokes 3 years ago xx

[Bebe76]

Thank you so much for sharing your story. I was diagnosed over a year ago and I am still going through all the emotions you've described.

[sebitha]

Thank you for putting your story down so clearly..It made me weep, for you, for me and for the uncertainty we all experience. My superwoman looks different now too!

Seb

[janiceray]

See how many people you have helped by your story,and how this site helped you.and thank you

If you want more info why not give Lupus u/k a ring and they will send you lots of leaflets and a great CD the CD at little cost

.understanding Lupus is a way forward so read what you can (U/K sites Only)

to understand is to be understood .

Take care

[Sandhu]

Thank you all for the kind comments, they have made me smile.

I wish you all the best faith and I hope that we all continue to be open with each other to help one and other.

I know I will have my down days but I owe it myself and others around me to try and stay positive.

Seriously I can't tell you all enough how much peace I have found with finding this website... God bless the internet!

[Hidden]

Sandhu..Your blog here is amazing!I think the way you describe all of your fears and feelings alot can relate to.This illness is so difficult to understand for newly diagnosed people(myself only diagnosed in August)and what you have posted here i am sure will give others the inner strength they need to carry on being optimistic that "Lupus does not have you ".."You have Lupus" xx

[MaryMcculloch]

This could be me. I was diagnosed 3.5 years ago and am just beginning to realise that I have to take it seriously. I have been fine mostly and have only had a couple of wee blips... Just updated my travel insurance as I have always ignored my Illness. Its real... I have had to declare it as I have had some issues over the last 3 months.. You sound a very positive person.. Keep smiling you sound like you have great support..

[Sandhu]

Thank you again, honestly these replies are really touching.

I have a great support system around me, even if my brother say's I have lupies (he's 30 btw) but I love him and he's been a rock where I've needed him to be taking a lot of my plate with out even realising.

I hope we can all help each other keep our heads above water.

Best wishes

[helen3d in reply to Sandhu]

your brother made me laugh my son who is just 8 calls it lucus when i was first diagnosed hed say to random people mum can do much she has lucus it always makes me smile he knows its lupus really but im sure he does it to make me smile which it does xx

[Sandhu in reply to helen3d]

We have to find humor in it some how right? Also funny how a 30 year old and an 8 year old think a like! Men eh?!

[pollyanna]

Sandhu, thank you for sharing your story with us. I agree that this site was a huge help to me when I was first dx and really had no idea about Lupus. Thank you for giving me a little inspiration and the determination on a bad to to keep going have a happy weekend, take care, Mandy

[Sandhu in reply to pollyanna]

Hi Mandy, Thanks for the reply and the compliment! I had a lovely weekend, now it's back to getting through the week!

[sarojbahia]

Ive read your story with great interest even moreso because of the surname i was diagnosed approximately 7 years ago and the motions and emotions that one travels through is tiring and troubling. A good supportive family is an asset but in my case i strarted off rejecting everyone. After a long and arduous struggle i am now living life again to the full after a number of years of work. I am now understanding how to cope and live with it. Dont let it take control of you, its an insidious ailment that creeps up just when you dont expect it

Regards

Sandhu 2

[Sandhu in reply to sarojbahia]

Hey other sandhu!

Thanks for replying, I can only imagine how hard it would have been to find the right grounds. The thing with Lupus is that it's not known enough for people to understand what it means. That includes me to a certain extent.

I'm still learning it's hard though. Esp when you have so many family functions to attend! Feel bad when you just don't want to go some where!

I'm glad to hear that things have turned around for you.

[margareth8537]

Sandhu

Greetings from one of the long-term ones - twenty years on and I'm still here!

In that time the Lupus has got worse, got better and is now so so. Having managed the fatigue and pain for years meant than when I got breat cancer I was just so pleased that my Lupus got a bit better. (Not that I would recommend it). Just that the chemotherapy is a rather over the top treatment for Lupus.

Even now I don't always realise that I'm flaring. And I always think that a flare sounds as if it should be short term, whereas it can go on for months.

I find that something like meditation is worth trying, as stress can make it worse. You don't want to lie there worrying, particularly at your age. You sound lucky with your family, and you sound as if you get a good example from your mum.

All the best.

Margaret

[Sandhu in reply to margareth8537]

Hi Margaret,

I admire people like you, you sound like you've been through a lot but are optimistic and have taken it on the chin. That's how I want to be.

There are a few things I have on my list of what I need to do to get things to balance and meditation is one of them.

I hope you stay positive and get better!

best wishes

[talula]

Sandhu, I am speechless. Thank you for sharing your story and you expressing your thoughts fears and concerns. You know what though? it so made me cry, it was as if i was reading my own story. I was diagnosed in 97 and after much to-ing and fro-ing between doctors i settled back into life as best as i could, given my situation. i continued to work knackered but managed, though bed time got earlier and earlier! In 2005 i had a TIA which really set me back. Until then i had worked on the assumption that if I didnt think about it it would stay away. well that hasnt worked. I have spent the last seven years with alsorts of medical hicups, this week i feel more positive than i have for yonks and i have to say the icing on my cake was finding this site. highs and lows that what we have to master!! again thank you to every one here it really does give us a boost. And again sandhu thank you for sharing your story. bless you, be positive and keep writing it helps too

[Sandhu in reply to talula]

Hi Talula,

Apologies for the late reply. This website has helped me move forward with everything and also put things in to perspective. I've realised how very much I am on the lighter end of the scale and how grateful I should be because of that.

Your right, mastering the PMA is the key thing here, nothing else is in our control!

Take care!

[Jude65]

Your experiences were wonderfully expressed. Thank you for putting it all down for us to read.

[Sandhu in reply to Jude65]

Thank you Jude, much appreciated!

[Hidden]

Hi Sandhu, Thanks for your honest blog. I hope you are doing well. I was drawn to the blog by your name. I am punjabi sikh and was diagnosed after having my daughter 13 years ago. I spent so much time thinking it was post partem fatigue & depression!I now have 2 beautiful children who ashamedly are my support - its no job for children.

You worry about being a mum.......

I had my second daughter and the medical staff were brilliant. Remember everyone with lupus is different but I was warned of the complications there MAY be before i conceived but decided i didnt want my daughter to be an only child and was checked & scanned regularly by a maternity unit at a teaching hospital where they studied lupus and its affects.I wasnt a guinea pig but felt comfortable knowing that i was in knowledgable hands.She is now 9-no birth complications and absolutely stunning in both features & personality so dont disregard anything until you have FACTS from doctors and not your internal fears.

Yes, lupus is scary and so unknown that I am certain people out there are thinking we are 'faking it'!

I have ups and downs and this site is excellent. You get help & advice but no intrusion. No one will tell you how you should be feeling but at the same time, thank god, no one says awwwwwwwwwwww poor you.

You said your husband puts you on a pedestal? quite right too! you are working,living with lupus and you had an issue and took the logical approach of seeking help though OT. Well done

Families dont want any of their loved ones to be unwell and the fact you have their support & understanding will reap benefits for you in the long run.

I am sure you have seen the stats for how many asian women are lupus suffers but yet, its not accepted within asian culture?

I now, with hindsight remember my mum's sister having lupus rash and constant chronic fatigue and basically being hidden away whilst her younger siblings (my mum included) had arranged mariages. Rather than looking at physical medical problems the family said it was bipolar.she used to say how her joints ached so much but was told she was making it up.her rash was obvious and got worse in the sun so they kept her indoors.How miserable for her? It wasnt until 4 years after i was diagnosed that i put one and one together - i may be miles off?!

Hope you managing lupus and its not managing you ! I posted a blog earlier about how fed up i am right now and then read yours and you have lifted my spirits with your positivity and good humour - thank you x

[Sandhu in reply to Hidden]

Hey! Thank you for the reply. That's so sad about your massi, I was talking to my cousin (mum's 1st cousins daughter) yesterday who also has Lupus and we were talking about how we are the first two in the family to have it.

I told her about your massi and said that we don't know that we are the first because it's so unheard of, any one of them could have had it!

Thank you for telling me about the kids, I don't want to think I'm going to have issues, I just think that even healthy people have issues so what ever is going to happen is going to happen, I just need to be more aware of my situation!

I hope you are well, keep your head up, let your kids be your inspiration, it sounds like they are!

[greenghirl]

i have just read this and it say's everything that i have wanted to say since i was told in march that i connective tissue disorder. it is so hard to tell people what you've got when you don't understand it you'r self, but little by little i'm learning with websites and a page like this one lupus uk. i hope one day more people and employers understand what lupus can do and how we feel. keep well x

[Sandhu in reply to greenghirl]

Hi, Yup your right and yet there is so much in this world that we don't know about. Work has been so supportive I don't think I could have asked for more. They help me help myself, I know I am very lucky!