I am a mental health use who was diagnosed with Lupus (SLE) last month (May 2018), after experiencing symptoms for 10 years + such as fatigue, foggy head, headaches, hives, flares, joint pain in arms legs and ankles, hair loss, light sensitivity, mouth ulcers, night sweats and temperature.
I also have Sjogren's syndrome, bilateral mastoiditis - I am getting a hearing aid due to hearing loss and Doctors are currently looking into the possibility that my recurring ear problems could be due to Lupus. Patulous Eustachian Tube (PET) this makes me hear my own body sounds loud in my head, otherwise known as autophony - the PET which could possibly be as a result of having Sjogren's syndrome as well as the ear problems I've had over the years - I am receiving treatment for this also.
Being a mental heath nurse I have been only too aware of the perception other health professionals can have of you when you are presenting regularly at Doctor's clinics time and time again describing seemingly 'non specific' symptoms that to us can be crippling but to others may simply be seen as 'health anxiety' or 'hypochondria'.
My grandfather had SLE and there are other autoimmune conditions present in my family (this can make it quite a difficult topic to discuss with them due to emotions), this fact coupled with my medical knowledge - I knew I didn't have health anxiety, I knew I wasn't a hypochondriac and I knew and issues with regards to my mood wasn't as a result of clinical depression, I knew it was reactive due to how generally lousy I felt day after day and how much of a struggle is was to get anyone else to understand just how rubbish I genuinely felt - this all helped me to relentlessly pursue the nagging feeling within me that I had Lupus.
In March this year I had yet another operation on my Mastoid bone - I was extremely unwell afterwards (very bad flare - cold barely move or think) - then the classic Malar rash appeared - sadly I could have jumped for joy (if I han't felt so unwell at the time) - finally I had the visual proof I needed.
I went to my GP who ran blood tests that all came back negative (as usual) - he wasn't prepared to send me to be checked out by an NHS rheumatologist without seeing me a few more times - as this point decided to take matters into my own hands and booked myself in to see a private rheumatologist - it was the breakthrough I needed - he did a ton of blood work and low and behold I got my much anticipated diagnosis.
The next battle now seems to be who takes responsibility for giving me the tablets I need! Things really shouldn't be this difficult!
Luckily I don't have any organ damage at present - I really do feel I have done my best to save myself from this fate by being relentless in my pursuit of a diagnosis - fingers crossed the meds will help save me from that fate.
Things are hard enough as it is when you have a chronic condition such as Lupus without the road to diagnosis and treatment being the battle that it currently is!
Ironically, you see the Wolf in this post - I drew that myself about 5 years ago when I was really struggling. I also have a daughter who us wolf mad and has her bedroom stuffed full of wolf posted, teddies, ornaments. I have decided therefore that I am proud of the wolf that is within me - I choose to see the wolf not as my enemy but as a symbol of the strength I have as a human being to never give up! I am tough! I work like a trooper through the pain and fatigue on a daily basis - we are all wolf warriors as far as I am concerned! When I talked to my daughter about my diagnosis she went to her friends at school the next day and told them that her mum was held wolf an half vampire (due to not being able to go out in the sun) - so a ware-vamp - I'll take that! I think I'm not far off the super power qualities when it comes to my levels of endurance at least anyway!
A bit about me - I am a full time working mum of 3, I love art, craft, classic novels/quotes, poetry, alternative music, heavy metal music and nature. I am in the process of adapting the picture I drew of the wolf to incorporate butterflies that I then want to have tattooed on my back - art is one of my psychological saviours - I can truly recommend it's benefits. Part of my role as a mental health nurse is to do art therapy with my patients.
I strongly feel that things have got to change, and when I feel better in myself (pinning lots of hope on the meds, fingers crossed), I will be pushing to raise awareness of Lupus at all the GP surgeries I work in as a nurse and beyond. I think this process will also help me to heal inside.
Anyway...lovely to meet you all! The process of writing this all down has been quite therapeutic for me
It would be lovely to hear from you....
Take care of yourselves fellow 'wolf warriors' xx
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Serser
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I hope since your diagnosis things have improved for you.
It's great that you've taken up crafts - i have always found sanctuary in that! I get deeply engrossed and everything else disappears, even if only for a short while.
So interesting to hear your story. Nearly everyone here seems to have their own unique journey, and their own version of this illness, but we seem to share the same qualities of courage and persistence in the face of what are often brutal hardships. I love that wolf; they have been a favourite of mine since I made myself a present of a textbook about wolves when I graduated from uni nearly 40 years ago. If they are our spirit animals, then we've obviously been given the wildest ones to run with!
Hope you will find this forum helpful, and will keep posting with your progress x
Yes we certainly have had our own journeys but sadly there seems to be some common themes running through many - that being that it seems to be a really long, frustrating, tiring process for almost everyone! I really hope this changes soon.
I totally agree about wolves too! I seemed to be drawn spookily towards the in my life.
You have come to a brilliant forum here. Many of us have had similar journeys. Yes, one of the difficulties we could have done without, is not being taken seriously, by GP and consultants.
By the time we do get heard, diagnosed, and offered treatment, many of us have felt so very unwell, isolated, and bewildered. (And, yes grateful and angry at the same time).
However, as you say, we continue to push through, declaring we will do all we can to raise awareness, to get better/earlier diagnostic pathways.
Meanwhile, we have each other here, we support, advise, and really listen, to each other.
I was a mental health nurse, like yourself. I transferred to General nursing because I felt that mental, and emotional healthcare provision, for General hospital patients, was sadly, left wanting.
I knew I could make a real difference, utilising mental health nursing skills alongside training for General nursing. (I was able to teach my colleagues mental nursing skills, and they taught me General skills. Win win, and win for patients!).
Yet, despite my background, when I became acutely unwell, 4 years ago, I was/am shocked that the dignity, compassion, understanding, and listening skills are just still not adhered to, by many staff within General healthcare.
I believe, you will be a great advocate/warrior for the cause. Though, please, pace yourself, be kind to yourself, first and foremost.
Unless we care enough for ourselves, we have very little to give to others. Of course, you know this only too well. Though, if your anything like me, your vocation is truly helping others.
Gosh we sound so alike! My mum is retired now but she was a general nurse, so luckily between the two of us when it comes to dealing with drs we are a force to be reackoned with!! It’s what has saved me time and time again, but I am aware that others don’t have this benefit and that is just not fair in my eyes!!
I also don’t think people should be pushed into going private in order to pursue a timely diagnosis. That’s not fair either!
In my work role I acutually receive referrals from local gps (one of which is my own) for people with health anxiety and I run an education programme to help them, so for me going to the drs and being fobbed off has been consistently offensive to me for some years now! I’m sure they would have referred me to my own advice group if they could, such was the lunacy of the situation!
I am approaching the tentative time of going back to work once the meds have kicked in after a considerable amount of time off, I have to admit I am nervous, but I think it will be okay (you have to think positively). I am going in armed with literature and a brief video that I am hoping my manager will allow me to share so that my colleagues have a chance to understand before they judge.
I know when I feel better in myself I won’t be able to help myself when it comes to trying to change gp attitudes and the attitudes of others. But I know you are right, pacing myself has never been something I am particularly good as and it probably going to be the hardest thing for me to master.
It’s so lovely to meet you.
NHS/Private Rheumatology sucks. I had seen Good ones, but I commented previously, these are few. Good ones end up ejected from NHS, or move abroad and get far more respect/money/less red tapes over there. I have seen several examples. Sadly, we lost these good Drs. Sometimes, it's best, to tell the truth. Rheumatology should be there for helping patients, not keeping their status quo disregarding patient care. Just imagine the vast amount of economic loss on patients, who were kept ill for so long.
That’s a skill, I’ve never mastered watercolour, but I would love to! I tend to use acrylics-feel more in control!
I need to relax more with the watercolour I think. With watercolour you need to be able to let go a bit more I think and let the paints make their own beauty. Not a skill I’ve mastered yet but I will keep trying!
Just love your drawing and reference to forum members as “wolf-warriors” - all the more fitting as Lupus is Latin for wolf! I am new here too and found oodles of priceless info. Here’s a wolf emoji for you.
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