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 as...it...took...me...sooo 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