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Chronic, multiple, life-limiting illnesses; no support; what to do?

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The third thread I'm starting I think but, again, will keep it short and simple to start with, despite the complexities I am continuing to endure without relief, without support, without any hope?

Can any of you relate to having all of the following at once, and if so, how do you manage, what are the best treatments, are there even any more things I can try or potential solutions I could have missed?

Typing through severe discomfort so please forgive any errors.

I have : horrific period pains and accompanying symptoms every time; sensations of always being freezing cold and shivering even with highest heating level set and many layers; widespread skin disease which is only diagnosed as Prurigo Nodularis but given no treatment nor explanations (I believe it is something severe and highly problematic as my whole body and scalp is filled with unsightly, itchy, deep, painful, congested, discoloured, embedded, non-healing, worsening lesions); severe, widespread, chronic spasms, pains, paraesthesia and stiffness all making it difficult to sit, stand, move and even shower and bathe; severe depression no matter what I take or do; zero motivation despite writing goals; no appetitie but still forcing myself to eat; dizziness; headache;nausea; throat dryness; weakness; unbearable fatigue; hirsutism; weight loss and hair loss; overall malaise - to say the least.

The ******* neighbour is still banging as I type! For goodness sake can't I even spend my most painful days of the month in a little peace and quiet?! I couldn't tackle any of my overdue tasks today either never mind go outside! It is not a quality of life!

I also happen to be unbelievably undeveloped despite being a 26 year old woman, ethnic minority, a congenital anosmic (never been seen as an issue by any doctor I've mentioned it to even though they ought to refer me to ENT specialists to see if anything can be done, obviously not sexually active whatsoever, woudl class myself as disabled both visibly and invisibly, and believe I have at least one undiagnosed severe illness!

I do not drive, struggle with walking, have had several negative incidents with taxi drivers, and do not have anyone to give me lifts. My driving lessons have been nothing short of infuriating and believe me, nobody on earth is more thankful for our good bus drivers! 

Currently sat rocking back and forth , with a hot water bottle and cushion at back , shivering and aching in day 3 period pain! If I jad superpwoers I would destroy all my enemies as the pain is that bad however there is nothing good I can channel it into!

This is all despite impeccable hygiene, self care, discipline & efforts and in addition to a plethora of existing problems. To be as brief as possible, it's all too much, I've been seeking answers for over a decade, I am not coping, in a lot of pain, need effective medical help to begin with, not ignorant NHS staff and other dismissive idiots!

I am very upset and wish I knew how to effectively eliminate these issues!

Comments

  • woodbine
    woodbine Community member Posts: 12,103 Disability Gamechanger
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    I'm sorry you feel as you do, it must be very hard for you, non of us are medically trained and therefor we can't/don't offer medical advice.
    Also sorry that you have not found the NHS to be helpful.
    What contact with your GP are you having?

    2024 Election won

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