I got lupus when I was just 20 when its bad its really bad I get a rash what feels like fags are being put out on me im tired all the time and have three children my middle child is currently undergoing test for autism im tired constantly im very emotional all the time my hands always get a frost bite feeling and to top it of doctors have found a lump they thought it was a swollen thyroid but concerned cos it always there should I be worried I haven't got time to be poorly or worry about me I need to be and look after my children x

3 Replies

  • Hi melmumofthree,

    I'm sorry to hear that you seem to be struggling. Whilst you are absolutely right that taking care of your children comes first, you also need to look after your own health, or else you will struggle more to care for them. Are you getting any extra help from family, friends or social services? If not, do you think it would be a good idea to ask?

    The frostbite feeling you mention could be a symptom of Raynaud's Phenomenon. Have you been diagnosed with this? If it is Raynaud's there are some things that you can do to try and prevent attacks and also some treatments that you could try.

    Are you currently having further investigations for the lump?

  • Hi, I'm so sorry you are feeling so ill and to top it you have the stress of the diagnosis of autism of one of your children.

    Please ask for help from the social worker and if your child is diagnosed you can apply for PIP to help you with extra finance for your child so you could then pay for domestic help.

    Do you have a consultant? If you have then you should let him know how you are feeling and tell him/her of any changes so your medication can be adjusted. If the lump is to do with your thyroid gland then have the doctor explain whether it will remain swollen or not.

    Praying you will soon be feeling a lot better and hopefully you will see your doctor who will be able to help you even with your children if you let your doctor knows your worries and concerns.

    Love and hugs xx

  • Hi,

    I know exactly how you feel. I Have a son who is currently undergoing tests for ADHD and other mental things.

    Please be strong! When I was pregnant I had over 50 blood transfusions (no doctor in Greece, UK, USA knew what was causing that) plus a million other tests. Two months after giving birth and four days before my son was to come home after intensive care unit at children's hospital, the doctors kept me in the hospital because I had no immune system.

    0 wbc 0 rbc 0 everything. Again there was no explanation from any doctor. I was the bubble mum without my family, friends and most importantly my child. Myself and child were in two different hospitals a few meters apart. I was dying for 3,5 whole months. No doctor knew what to do and were experimenting. From 6 patients who developed that condition I was the only one to survive-all others died from cancer.

    I had a number of chemotherapies & various different drugs and weird tests.

    What kept me alive was my will to be healthy and happy and strong for myself first! What my mum always tells me take care of yourself first and then your child. I am trying to be healthy, work full time, take care of my son and husband and keep up with hospital appointments 😉

    I try to analyse my life (every night I put my son to sleep) and make improvements!!

    Please take care of yourself first cause they need their mum more than anybody or anything!!

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