Going on with life with lupus

[Tavares79]

Hello good people

Hope you are all well,I really do. I appreciate your time reading my experiences and feeling and thank you for any kind words that you feel fit.

It's been probably a good couple of months since I write something here...I just been not well not specifically with the lupus but more from the health anxiety... it's unfortunately taken over my thoughts all day everyday...

I've not been calling GP so much but I do call every couple of weeks because I feel a symptom and I panic... I feel so much stress and frustration as I can't see it way out of this turmoil.

I've started last week a High Intensity CBT therapy one to one, he asked me to do some writing down the situation and the thoughts that come after and also the Goals I want to achieve at the end of the Therapy

I've had only two sessions so it's only the beginning and I feel even worste with everything passing day.

He said I need to accept that my health has changed and I won't be like I used to..I started crying..

I don't want to accept , I feel robbed to be honest , feel hangry a lot with myself and others, I'm snappy and even forget to eat. Fortunately I am still strong to keep the house tidy and the baby happy going out for walks, playground and playgroup but I feel so very tired and mentally exhausted.

My husband is stressed and tired also as he has to work 7 days a week to pay all the bills and everything else a house needs.. not spending time with is

I've been in a massive anxiety due to numbness on Dr my harms and jaw... doctors saw me 3 times and first time he thought it was just a stiff neck, prescribed me diazepan ( love the stuff..wish I could have more ahahah ) second time send me to physio where she said she reckons it's a compressed vertebrae on my neck, and the third time another doctor said oh it sounds like neuropathic pain...so I have another tablet to have at night which makes me drowsy but the truth is I was feeling a bit better today regarding heaviness in my harms.

Another good thing is I've managed to get an appointment today with an MP ( sir Robert Symms) where I've explained what lupus is,what studies have been made lately,what lupus UK is and how much this charity has to beg to keep itself going to help us.. ( SO VERY MUCH APPRECIATED IT ) I've also explained how this is an invisible illness and so not regarded as disability even though in extreme cases you can ask for a benefit that I actually can't remember the name. Anyway I've printed that out for him to keep highlighting the most important bits SO he wouldn't think it's too much reading.🤔

I've also asked him to mention or research why is the government not giving money for research as more and more are starting to be diagnosed... I've mentioned that the numbers of lupus sufferers is most likely to be a lot higher than it shows on records as a diagnosis might take between 2 to 10 years with most of us being treated for inummerous conditions that aren't the cause.

I've mentioned how we suffer from loneliness as most people doesn't actually know what lupus is and all the mental health issues that come afterwards. He was really keen ,at least he was taking notes 🙂

It's hard but we'll make it through this.

Hugs for all in need and have a good night.

[Apricot100]

It's so hard isn't it, but you should feel so proud of what you're managing to do. Happy healthy baby and political lobbying on behalf of thousands!

Take care of yourself and huge hugs and respect for all you're doing - imagine if it was someone else doing what you're doing whilst ill. Looking after the house, a young baby, getting out and about and meeting MPs to argue the case for lupus sufferers. You'd be impressed surely? I am! But remember to rest when you can.

Xx

[Tavares79 in reply to Apricot100]

Thank you for your words...stay strong. Hugs

[svfarmer]

Hi there, my heart goes out to you , you are doing an amazing job holding everything together, I too have lupus so know how hard it is , my eldest son has had serious mental health issues , he had a course of CBT which really helped him so please carry on with the CBT it will help you, now a days my son does meditation which has helped 100%

Best wishes to you and your family

Sam xx

[Tavares79 in reply to svfarmer]

Thank you... hugs

[Roarah]

I have been receiving one on one therapy for ptsd and health anxiety now for a year and it has changed my life. I am finally able to enjoy my life fully even with lupus, aps and stroke damage. I am happier and more awake than I was even before my illness. It took some time and a lot of work but my mind now focuses on what might be right rather than what might be wrong.

I hope you have a similarly experience with your treatment as well. Xo

[Tavares79 in reply to Roarah]

So happy for you... that's amazing.

Can't wait to see results