This is going to be a long one. If you are open to the idea of seeking therapy I’m sure you will find this pretty intriguing. If your totally against therapy I would still recommend you carry on reading this, because sometimes and only sometimes there’s a reason for why we behave in certain ways.
For each us , we didn’t wake up one day and magic autoimmunity into our lives. For most it’s taken months even years (years for me) to even know what autoimmunity is. Through our child hoods we were made aware of lice, chicken pox , measles, we never heard , “dale wasn’t at school today because he has lupus” or “Sjögrens” or “vasculities” or “UCTD” so these illnesses were never taught to us. Unfortunately we had to learn and educate ourselves after suffering symptoms that quite frankly are enough to send us insane.
For a while now I’ve felt something inside me has changed and that’s not my illness, although I can continue the excuse, “I’m fat because I take steroids “, “I over eat because my body needs the energy “ . I have over eaten for some time now. I reckon a few of you at this point of my post can relate completely to over eating, maybe you’ve even got a little smile on your face right now 😉 thinking this sounds like me ..........
I took the step today to pay money I can barely afford but I needed to explore “what changed” “when” “how”. I ask myself these questions daily. It’s tiring because I couldn’t get to the answer but was grateful that I had the insight that this wasn’t illness related, (well not directly)
January 2019 I was diagnosed with UCTD after having just spent the best part of 5 years going around in medical circles. The relief that finally I was getting answers, someone listened and was going to help 🙂
I find it really strange to say, “I was happy to finally get answers , even though it meant I was going to live with an illness “. Again I know many of you here will relate to this and remember that moment when the weight was lifted, and there was a good reason to all these “invisible” symptoms that so many just didn’t listen too and made a decision to label these symptoms as, “anxiety” “in your head” “no medical reasoning” “functional” “OCD” “stay at home mum” “just had a baby” “depression”. I’m sure you’ve heard your own label that has scarred you along the way.
I did say this was going to be long 😅
So Nlp therapy .... what did I learn ? Searching for the reasoning behind this pig eating habit which started approximately 3 months after my UCTD diagnosis. I was on high dose steroids before this diagnosis so I’ve been able to determine that steroids are just my excuse and not my reasoning.
What changed between diagnosis and 3 months??? I can answer this very clearly now because I was taken to the most quiet of places today in my own mind .
Imagine being in such a peaceful place, no noise , no movement but this noise appears from so far away in my ear . This moment was just as weight lifting as my diagnosis day. All I could hear was this doctor from 5 years ago shouting and screaming at me, “your mental”. “Your crazy” “I can’t see anything wrong with you” it was screaming at me and this has been my sub consciousness for months. That need to eat was to deal with the anger that is so powerful in me . Munching away my anger and frustration and hate because this one person, just one ☝️ made me doubt all aspects of my reality .
The 3 months from diagnosis to eating was my acceptance of the illness, then the acceptance turned into the most over powering feelings of hatred and anger and hence my downwards spiral began.
I hope if you’ve made it this far in my post it hasn’t been a big anti climax 😬.
What I want to highlight here is just how damaging it is to be in this autoimmune mind field. It is soul destroying and mentally damaging fighting for someone, just ☝️ To hear us and listen to us.
To all of you on this merry go round of getting answers , don’t give up. I know it’s hard , I know it’s draining but I also know your suffering and you must remain true to yourself here. One day I hope you will find yourself where I am, not 100% healthy but 100% certain of your reality living with autoimmunity.
If any doctors should happen to read my post 😅. The next time you have someone sitting in front of you in tears begging for your help: they are not mental, but they can tell by your face that’s what your thinking, they need you to have faith , to listen to accept their reality and guide them with your medical knowledge. That ☝️ 20 minute appointment could be relief for your patient or like me, 20 minutes has destroyed me for 5 years!!!! I ask myself now “am I mental?” And I answer “no you are not, you are hurt that 5 years of your life has been hard going so your slightly damaged but that’s ok, damaged items can be fixed , I just need to search for the correct glue and eating just ain’t gonna fix this one 🤪🤪🤪
Xxxxxx
Written by
Lisalou19
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I think so many of us can relate to this. Many doctors have had me in tears and I felt ashamed. They made me feel shame about asking for help.
Well, it turns out that I was correct and I had a multitude of undiagnosed autoimmune conditions. I have a brilliant team now but sometimes still have to fight to be heard.
Your honesty, humor and determination inspires us all. I wish you hadn’t had such a difficult road to diagnosis. You have still have a lot to give despite the journey, though.
It makes me happy to know you are well cared for now.
WOW, Lisalou. Very emotive, powerful stuff that so many of us can relate to. I certainly can. Don't know how to reply just now, but maybe tomorrow I'll be able to get back to you. xxx
Yes your story has definitely resonated with millions of people out there.
Our voices must have no sound as no Doctor or Consultant wishes to hear or cries for help.
You have a very strong mind and it will not settle for being pushed around.
These medical so called professionals need to get their act together. We are not all text book patients, they need to think outside the box.
We depend on their expertise to help us get through the lowest days of these horrible autoimmune diseases. They are not doing us a favour, they took an oath to "look after the sick".
All going well, we will wave goodbye to these ugly diseases, send them into remission or wipe it out entirely.
You have the spirit to fight on for you and your family 👪
Your Pain Free Days Will Come.
Take Care.
All the Best 👍💜🤞x
Lisalou, that which does not kill us, makes us stronger. You are STRONG!! Thank you for sharing all of that with us. That was heart felt and amazing.
Hi Lisa, that's a very emotive , powerful post that those of us who've struggled with a diagnosis can identify with!. So glad this first afternoon session was so helpful, may there be many more for you on this journey to better treatment. Take care. Xx
Hi Lisa! Surprise....I am a doctor. Guess what....I was treated with the same disrespect as everyone else on the forum. And you know....I didn’t get it until I had it. And I like you have gained 20 lbs. Even with diet and daily exercise, I can’t get rid of it. Don’t get down on yourself. Steroids alone cause weight gain. It changes your metabolism to hibernation mode and the weight is sooooo hard to lose.
Having lupus is both a physical and mental burden. It’s depressing to know that we’ll never reach our full potential in life. But something that keeps me going is knowing that I was given this for a reason. You are stronger than you think and you must play the hand that you were dealt. You are unique. Never forget the insurmountable amount of empathy that you possess. It will come in handy one day when someone fits in your shoes.
Much love and respect. Thank you for opening your heart to us. I hope this post speaks to others struggling to accept a new life with a chronic illness.
It sounds as though that session was worth every penny of your hard earned cash lovely!!
Now armed with this information u can make changes that u want to make..your empowered again n that means that u can move forward!!
This is why we are all lupus warriors!!!
Much as I can understand that u might wanna hit that doc with a baseball bat..it's important that u work towards forgiving him..that's the way to release any anger attached to these kinds of experience..forgive n then let go. 💐💐
Bless you Lisalou for respectfully sharing that heart moving, emotional, personal journey, Life is a journey my friend, wourderuse excieting, frightening, and O" So very powerful. You make me feel. Thank you, and bless you, be well, and stay on the path. Peace, thestormy sunshine
Diet, stress reduction, vitamins and minerals , holistic healing . This is where I am starting to extinguish this fire inside on my body. The Pharmaceutical Thugs have made enough money ! I wish you the best.
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