My wife has just been diagnosed with Lupus so this is my account of our history and the build up of symptoms leading up to the diagnosis.
I am writing it as i haven't found anyone else's account of 'living with someone with Lupus.
I have been with my wife for 13 years and ever since we met she has always loved to sleep, literally sleeping 14 hours waking up for 2 hours then asleep again, at first i thought this was because i let her sleep unlike her parents who always got her up early in the morning and didn't allow sleep in the day. (she was studying at university by the way, hence she 'could' sleep all day).
But as time went by she started to say that no matter how much sleep she has she is still exhausted.
And so it all starts:
Countless trips to the doctors, to finally be told 'You have ME' oh and this isn't really recognised and there is no treatment....GREAT. The first of many useful tips and advise from our wonderful 'you've got a virus' GP's. (that is what they say to all patients isn't it?.
Then all of a sudden she would be fine and we would get on with life, then a couple of months later back to square one, tired, black under her eyes (like a panda.
We tried regular massages with a dear friend of ours who has now passed on. He would always recommend Tahitian Noni juice for its cleansing and anti-inflammatory properties, but my wife didn't commit to it and at £30 per bottle was quite expensive
Through it all she would bleed heavily at that time of the month, pretty much like she'd been stabbed and way way way over the 'normal' limit. So back to the Doctors where they put her on every different contraceptive pill, none would work!
During this time my wife through dogged determination managed to get a degree and various other qualifications and have a successful career in the civil service - how? What can i say she is the most determined person i know when she puts her mind to something.
I have to say though, her career hasn't been without its problems with her health, time off work for symptoms that no Doctor could diagnose to any level of understanding for her colleagues, but she has pushed through and been the top performer in any work task.
So we are at 8 years together now and all the time the health problems have come and gone and no Doctor has given any positive answers, more the feeling she is a hypercondriac.
In fact everyone around us, family, close friends were all tutting and raising eyebrows at me when they would ask 'how's your wife'...not too good would be the reply. I would stop there when you could see they simply were not interested, after all the Doctors haven't diagnosed anything.
During the 8th year, my wife got shingles on her neck the first time, then her eyes, the her side, then her neck again, basically 8 times in 18 months!!
what do the Doctors say? That's unusual, damn right it is, so what do they do? Nothing!!! the great NHS service
Then out of the blue my wife is pregnant, during which she got hyperemesis during pregnancy, it is a 9 month struggle but she gave birth to a beautiful baby girl, after the birth my wife was actually ok for the longest period of time ever since we had been together!! life was good
9 months later after giving birth she was pregnant again, again she got hyperemesis, again a big struggle especially this time as we had a very active child.
She gave birth to a beautiful baby boy 9 months later, THIS IS WHERE THE FUN STARTS!!
The hyperemesis symptoms didn't seem to want to go away, she was permanently shattered beyond belief, and had pains on her right hand side under the rib cage, but still she stuggled on and finally went back to work - god knows how!
Back to the Doctors and they do every blood test they can, all come back perfect. (it must be in your head speech comes out) Brilliant another no-believer!
The rib pain got worse, her hands around the knuckles would crack open in an instant and then heal just as quickly (like something out of a movie), she had shoulder pains, so finally a Doctor sent her to a specialist consultant.
He gave her a steroid injection in her shoulder as a muscle was spasming, sent her for a scan on the rib cage pain.
We chased the scan results to be told she had been discharged! must be ok we thought.
8 months after the scan and with the pain increasing in her rib cage, she went back to the doctors, gave her pain relief medication and sent her on her way, still the pain gets worse, back into the doctors, this time insisting something is wrong and low and behold the scan 8 months ago revealed gallstones!!!! (a letter had been sent to the local doctor which they missed and also she hadn't been discharged by the consultant, this was the secretarys mistake!)
Anyway what do the doctors do? stronger pain relief and 'see how things go'. it gets worse and 2 trips to A and E with the pain...more pain killers.. (at this point my wife is verging on becoming dependant on pain killers just like a full blown drug addict.
Finally the last visit to a proper specialist they agree to take out the gallbladder...6 weeks later!! they finally operate and yes the gallbladder was rotten!!
The pain is now gone and she feels better...for now
Next she goes to see the Consultant for a checkup and she tells him about her hands and some additional pains in her rib cage...he tells her they'll see how she goes over the next 12 months, a few days later her hair starts to fall out (only a little bit) so she calls the consultant and he orders blood tests and they come back with raised ANA levels (think thats right) and something else which is low a clear sign of Systemic LUPUS.
A letter is sent to confirm....is that it??? a letter, my wife has just been diagnosed with an incurable illness that can only be managed and we get a letter!! to say we are furious is an understatement, although on the flip side we now have a name for the illness that is recognised so to all those who didn't believe she was ill, we can now say..in your face she was really ill, although that sounds wrong..yes my wife is ill, it has been a long and winding road to get the diagnosis.
So where now? it is one week later from the news and we are completely lost. Knowing my wife will be on and off ill for the rest of her days, knowing that her past illnesses were the lead up to this conclusion has thrown me. I always thought there would be a fix to the illness, but knowing there isn't is hard. We have 2 young children and they are hard work.
My wife is really struggling to accept the illness and i feel i have to give pep talks to motivate her into finding some kind of cure... i know there isn't but i am a positive person and have read things about having a gluten free diet, cutting out dairy products as these can reduces inflammation and a lot of symptoms are inflammation with lupus. I want her to accept and change her eating habits right now to see if it helps, while my wife is trying to accept that she Lupus while being in the middle of a flare up.
There is no support locally, no one we know has the illness, the doctors are absolutely useless, where do we go what do we do??
This is a life changing diagnosis even though we have been living with the symptoms on and off for 13 years, but that was different as we always though she would get better.
My wife starts some immune suppressant medication next week so we will see what happens and try and make small life changes to improve life in general.
I realise i have droned on about this, but this is like my therapy. I have needed to get this off my chest as who wants to listen to me go on about this except perhaps like minded suffers and carers and other people who live with others with lupus.
I would like to hear from anyone else who's partner has this and how they deal with it.
I would also like to hear about success stories as there seems to be a lot of negative stories...understandable but surely someone has had all the symptoms, been diagnosed and come through the other side either a better person, fitter and healthier ????