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Why didn't I join LUPUS UK years ago ?!

Hi everyone, I'm new here & have just been browsing the posts for the last hour. Not glad that you've all got this illness too, but happy that I'm not the only one & there are folk who understandEXACTLY how it feels.

I was diagnosed with systemic lupus (& Sjogren's) syndrome 17 years ago. I had been pretty fit, was active & working as a nurse when the first symptoms started, mainly the dreadful fatigue - I felt like I'd been drugged. I was falling asleep in handovers, meetings, meals & on days off would sleep round the clock. It was like living in a twighlight world. I was back & forth to my GP but nothing was showing up in bloods, I started to think it must be all in my head though I knew it wasn't & by this time my joints were very painful/swollen. After about 1yr, my doctor checked my thyroid expecting it to be underactive but came back overactive so sent me to see endocrinologist. By this time I was not a well bunny but he suspected SLE straight away, did further tests including for Antinuclear Antibodies & as soon as the diagnosis was made I was whisked into hospital.I needed high doses of IV Prednisolone, was in hospital about 3wks & didn't realise how seriously ill I'd been till I was getting better.

I went back to work, on a maintenance dose of steroids. As my joints were becoming increasingly stiff & painful I was put on Hydroxychloroquine as well but had to come off it as I had a seizure one day. This was replaced with Azathioprine & I struggled on at work part time (& oh, I know you guys know just HOW much of a struggle it is) Eventually I had to finish because I had further seizures, one causing a small brain bleed - in hospital for a fair while having intensive physio & speech therapy as that was affected. Friends & family would joke about me sounding three sheets to the wind & starting to order restaurant meals 1/2hr before them long !! I was living with my divorced big sister (& best friend) & she was absolutely wonderful, don't know where I'd be without her.

Over the next few years I had frequent flare-ups & further seizures, my mobility got worse & my mood declined rapidly into deep depression. I had Pulses (IV Pred) for flares, lots of other meds for mood, pain, sleeping, calcium, Vit D etc & many hospital stays. I wasn't angry at my GP/other medics, I just wondered where on earth my idyllic life had gone & dreaded what the future would hold. At times I felt I was falling into a deep, black hole with no way to escape - the only way being DOWN.

However, in 2010 I had my longest period without a major flare-up. I felt better than I had done in YEARS, not anything like I had been previous to diagnosis but I started to LIVE again ! I moved into the flat I'm in now, just up the road from my big Sis & other family - I felt like I'd been rescued from that deep, dark pit at last. I was aware that this could end at any time but, oh boy, I made the most of it - my glass was half full again !

Xmas Eve 2011on returning home from lunch with friends, my toes felt numb & my legs felt "funny". Over the next few hours my legs became weaker & I had no control over them so off to hospital again. By this time I couldn't move my legs at all & (old nurses head on !) I thought it must be Guillain-Barre Syndrome (acute post-infection polyneuropathy) & knew the ascending paralysis could affect my diaphragm so I'd have to be put on a ventilator to breathe for me. It was the first time I was really scared in hospital. I didn't have any reflexes at all in my lower limbs by now, it had progressed rapidly & the docs were very quick to put me in ITU (on bloody Xmas eve !!) in case my breathing went. Thank goodness it didn't & I was taken to a Neurology ward on Xmas morning. Being very rare, I had a steady stream of medics come to examine & see a possible case of G-BS which was eventually ruled out after all that fuss.. I had MRI scans, CAT scans & 2 Lumbar Punctures (ouch !) & had to learn to walk again with intensive neuro physio over the course of a 2month stay on the NHS. After putting their heads together, the Consultants along with my Rheumatologist decided it was an abnormal immune response i.e. it attacked my nervous system due to my SLE.

Four years later I can walk but not far, still have weakness in my legs, reflexes are very weak & my skin is still slightly numb on my hands, feet, face & head (have to be careful with hairdryer, hot food & liquid as I sometimes accidentally burn myself - yikes 1).The flare-ups of SLE are back to their "usual" frequency, my mobility is not good at all, everything takes a huge amount of effort - doesn't take much exertion for me to hit that brick wall & I do get periods when I'm very low BUT I think over the years I've come to accept that this illness is part of my life. Apart from taking my meds, getting pulses when I need them & trying to look after myself as best I can, I CAN'T change the fact I've got Lupus so I may as well accept it. It doesn't govern my life the way it used to despite the fact that it's changed it dramatically. Yes, I have varying degrees of limitations as to what I can do but during flare-up I try not to focus on what I CAN'T do & concentrate instead on the things that I CAN do. During rough times, I tell myself I've only got to get thru this TODAY (yesterdays gone & tomorrow ain't here yet so the only day I can do something with is THIS day !). When things are pretty good I think, well you'd better make the most of it as THIS is just for TODAY too !!

Life isn't perfect, but nobody ever promised me that, point is i can live life on life's terms now. When I look at what I have got in my life (wonderful, loving family & friends, a cosy little flat with a fabulous view & my little cat in the window to greet me when I come home !) & not worry bout what I haven't got, I cope with this illness far, far better. Rather than be the right, front & centre of my world, looming large over my life, I try (don't always succeed, but manage more often than not) to relegate it right to the back where it's an irritation, an inconvenience but I DON'T let my SLE run my life the way it used to. I run it today & it's a pretty darn good life too !

So sorry to have rambled so much, but as I said, it's been waiting 17 years to come out !! Hope to get to know you guys better over the coming months.

Keep well folks, Carolyn

14 Replies

Hello Carolyn,

That's an interesting story - no-one could complain that it's not dramatic enough! I'm just starting out on my voyage into Loopy-Land and am starting to reconcile myself to this unexpected turn in life's journey.

Glad to meet some more experienced travelers on the way!



Hi Whisperit,

I think it only seems a bit dramatic as it's all crammed into a relatively small space -I'm not a Drama Queen,(honest !!) but it has been great to get it all out here at last. A couple of things were rather hairy at the time, but remember it all happened over a period of many,many years. Also Lupus is a highly variable disease differing from one person to another.

Learning to accept this illness as part of my life has been a biggie for me. Nothing to do with giving in or fighting it but, as you put it, reconciling myself to the fact that life is different now. It's still very rich & fulfilling and I find that I appreciate the simple things that make up my days much more now - perhaps because I go at a much slower pace & have more time.

Although the nature of Lupus means we may have different symptoms & varying difficulties, I think we can understand each others problems where others often can't. Hopefully we can share some solutions to them as well, but just knowing I'm not alone on this path has lifted my spirits. Look forward to getting to know you. Keep well, Carolyn


Welcome so glad you found've got a GRRRREAT attitude....your post has made my day...many thanks for all the details

🍀😘🍀😘 coco


Thank you Barnclown & good to "meet" you. I just try, on a daily basis, to do what works for me. I'm chuffed to bits that I've finally joined LUPUS UK. It's a relief & a comfort to know that others are walking the same path as I am and we can support each other along the way


Well said 😆




Yours is the sort of post I feel like posting on my "home" forum. Most of the members just have polymyalgia rheumatica, a vasculitis that causes rheumatic symptoms and a lot of muscle pain. It is a pain in the anatomy - literally and metaphorically - but the symptoms are managed pretty well with pred and it rarely strikes before 50, mostly after 60. If you are unlucky enough to get the associated but relatively rare giant cell arteritis you do risk losing your sight without treatment. but otherwise it doesn't usually lead to really serious long term effects, it doesn't kill and for 75% goes into remission in 2 to 6 years. But the complaints about how "this must be the worst possible chronic illness to have" are legion.

I always preach acceptance - you are a great example. xxxxxxxxxxxx


Oooooh don't get me started, PMRpro! I am still a member of a another support group - which shall be nameless. But since developing this illness, I have completely lost patience with the complaints there claiming that, "No-one understands how terrible and life-changing this problem is" when the problem turns out to be that they have a slight limp when running the marathon....

Yep. Empathy fail. Bad me. Bad, bad me.


Know EXACTLY where you are coming from... Bad, bad me too.


Welcome Carolyn, so glad you've found this wonderful site! You've been to hell and back but are still smiling, I really admire that. I've had many many hospital admissions over my 20 odd years with Lupus and have been seriously ill many times and like you I so appreciate the little things in life so much more. During those admissions I've meet many others with these illnesses and I can honestly say I've never come across an unpleasant, unfriendly or nasty person. I believe living with these life altering serious chronic conditions makes us more open and empathetic to others. We are so appreciative of a listening and understanding ear and we then want to give that to others going through the same thing. Don't get me wrong, it's bloody crap some of the time and some days I still mourn my old 'normal' life but I'm proud of how I and my family have coped with everything and gotten stronger and grown closer, I love life.


Hello Carolyn...I echo the sentiments, you have been thru the wars but what a great attitude! Bravo 👏🏼👏🏼👏🏼

Glad you are here...I'm only about 18 months old here but have found the support to be wonderful, always.

I think diseases land on personality types..not really I guess, but those with lupus, maybe because it's the not instantly recognisable so we need to either explain or hide the malfunctioning moments....are resilient, and have developed a good sense of humour and a lot of compassion.


Hugs 🤗



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Such a great post Carolyn & welcome here. I've got uctd but have found this site to be invaluable & have learned more here than from my GP xx


Hi Carolyn,

It’s good to hear that you are finding this forum useful. Thank you for sharing your story with us and your outlook on life!

I hope you keep us updated of how things go for you and don’t hesitate to post whenever you have a question or want to share anything else with us.


Hi Carolyn welcome, it sounds like you've been through the wringer. You're so very fortunate to have such a good family support! And you have a wonderful positive attitude which really helps. Welcome to the community! There are many wonderful people on here that have lots and lots of great advice. If nothing else you can just vent when you need to. Blessings to you, Nan


Just want to say a HUGE thank you to all of you, my new friends, for the wonderful warm welcome to this site - am so glad I did it at last !

Got my 6 monthly check in with consultant this week so been busy making my list of points to mention to her, & as is my wont when I see my "lupus stuff" in black n white, I start with the poor little old me's (the PLOMS) - life's crap (it's not), it ain't fair (it is) etc. For goodness sake - I missed my own bloody birthday meal last weekend (everyone else still went & I was mightily well toasted, apparently !!)

A very dear friend rang on Friday, said "Ah, I take it you're doing your 'Andrex' list for the doc, eh" ? (she knows me so well !!) "How about you throw your PJs in a bag, I'll come for you & we can have a 'middle-aged sleepover', watching old movies, eating ice-cream & other goodies" ? Bless her, she even said she'd do pancakes for supper & I could wear my onesie if I wanted. Pancakes, most definitely - the onesie, most definitely NOT to be worn in company (15 years of steroids, I look like a Teletubby with attitude !!) Well, we had a blast just lounging around watching some great films, eating ALL the wrong (but, oh so right !) things and just laughing all weekend - so,so simple but wonderful ! I recommend it folks, it did my heart & soul (& therefore, my body) the world of good.

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