Still Plodding On – Just!

I have been struggling for quite a while and I have been in what feels like a year long hibernation.

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I have been working hard on trying to gain control over my symptoms and start to recreate a world from the dusty, smashed pieces of my life left behind after my relapse couple of years ago. However, I have hidden from my blogging in spite of the comfort it used to bring me as I felt like a fraud. I wanted this blog especially to be a positive space but for well over a year I have found little to be positive about despite my best efforts. I have also been struggling with accepting the physical damage that my relapses has brought on over the past decade and I have not been able to look in to any mirror bigger than a compact size without crying, and or, having a panic attack. Due to this insecurity I felt I could not talk about makeup etc. I felt, and to be honest still feel, ashamed. I feel I have failed in life and this time I felt I could no longer mask it with makeup and positivity, so I hid away.

I still don’t want this space to be a whining list of little miseries and self indulgence but I also want to be honest about the challenges of having multiple chronic conditions. I have avoided writing about this last year as it still very painful to admit and examine and I am still worried about how people would react when I have to admit that I have been struggling, that I am not as strong or as OK as people think I am. I am still worried about not being strong enough, of failing. When I am struggling to get dressed or brush my hair I do feel like I am failing like being ill is my fault that it represents my failing, my weakness. I know that it is not logical to think that way, that no one asks to be ill and that illness is not a fault or failing but the weight of chronic illnesses can drag you down into those murky thoughts and make you feel that you do not deserve to be around, to be seen.

I have had another biggish flare a few weeks ago and I am fed up. Fed up of waiting for things to change. I want to move on and I want to get better and I want to start re-engaging with the world again, so I thought I should start back in a space that I have felt comfortable and surrounded by diverse and understanding  people. So I hope to keep posting and start trying to be me again. So hello to those of you kind enough to read this and I hope to start posting in my usual way again. I may be in pieces but hopefully I can start to put them into a new beautiful picture, a mosaic if you like -cracked but just about holding together. x

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The Importance of Information

Yesterday I had a health assessment in my own home to see if I qualify for a UK benefit called PIP (Personal Independence Payment). I have been stressed and anxious at being ‘tested’ and I was in a lot of pain yesterday. I am still in pain today. That pain is being worsened by another ‘test’ that I have been summoned to take on June 18th. I have spoken to quite a few of my followers who have been going through similar things; applying for welfare, seeking medical support, financial worries and dealing with prejudice relating to their conditions. I have also been amazed at how despite some people I have talked to being from countries outside the U.K., even as far a-field as Australia and America, their experiences are so similar to ours in the UK. And I have also been shocked to find that the institutional and societal prejudices that have been increasing in Britain regarding chronic illness and invisible disabilities are also present in other countries.

In the belief that key to The Modern Girl’s Guide to Being Sick is the importance of information and that as knowledge is power, the more we share and add to that knowledge the stronger we become I would welcome people to post any links they have found useful in managing life with their conditions, or share any advice or tips they would give others.

Two links I have found useful the past few days regarding UK benefits have been:

http://actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/esa-appeals-factsheet.pdf

http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

I have given longer descriptions and analysis of the processes on my sister blog: https://theillrepresented.wordpress.com/