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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Hello again!

These past few months have been the worst time in my life. I have had chronic conditions for 10 years and have never suffered this bad before. I am still very shell-shocked by it all and I’m extremely weak and confused but I’ve been stuck inside my house (majority of the time in bed) for too long. I am trying to force myself to start to pick up the things that I enjoyed before by doing at least one small task a day. I am trying not to feel sorry for myself but it’s so hard! everyone’s strength runs out at some point. I thought that my blog, make-up and you lovely people would be the perfect place to start my journey back. As a lot of time has passed I have a lot of catching up to do, so how are you all? xx

A little quiet

I just wanted to explain why I have been a little quite and why there may be a delay in writing posts/replies. I had a very rough night on the Friday just gone and an ambulance was called for me Saturday morning. I refused to go into hospital (it always makes me sicker) so after consultations I’m being treated at home. I’ve finally been given stronger pain medication, which is helping a bit and a few tests/assessments are being fast-tracked. I’m exhausted, frustrated and my immunity is very low but I hope I can post/comment soon as talking to you all helps to make me feel a little better. I’ll pop in and out when I can.

In the meantime this little one has been a wonderful nurse and is keeping close to me.

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Contact

I’ve only just realised that I haven’t properly written on my about page – duh! I really thought that I had written one but it only shows my Gravatar and not one specific to The Modern Girl’s Guide. As I haven’t I will do. But until I write one properly if anyone would like to contact me my email is elliesimaginaryfriend@gmail.com

I will sort myself out one of these days! x

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/

I’m chuffed, so thank you x

200 Likes

I know people don’t often post their ‘reward stickers’ for how many likes they get but for a blog that’s only been going 4-5 months I’m really grateful for all the support people have given me. I started the blog as a way to connect and share experiences with others and as a means of giving me something positive to focus on. Chronic illness cruelly isolate people and I’ve found blogging a great way to fend off this isolation. So a huge thank you to those of you that have taken the time to click ‘like’.  x

likes = smiles

Take Advantage of Every Little Positive

Wrestling with Sleep

A key feature of all my conditions is persistent fatigue, the type that lashes at you with every breath and with every effort those lashes sting over wounds that have been unable to heal. It is not pleasant and the cruel irony is that whilst your body aches for sleep every part of the day, often the pain makes sleep impossible so the lashes continue piling on lessening the chances to heal. And even when you are able to sleep you absorb it like a glutton and the result of such necessary indulgence is more pain.

Sleep for me is a constant struggle; I fight the need of it so I can stay awake to do a task, I wrestle with it as I want desperately to sleep yet the pain scares it off and I often fear to sleep as the chances are that when I wake I will feel just as bad or worse when I wake. I also fear that I am and will sleep my life away. This sounds quite bleak and mostly it is, but some days when insomnia persist through the night – like now – I get a surge of manic-like energy than makes me feel indestructible and full of optimistic plans of the day ahead…I’m going to set-up a website, read that book, walk the dog, write several pages… Alas, this feeling does not last long and the plans will just remain plans, but I love the feeling as it is a reminder of the old me and I will run with it for as long as I can – which will be probably be till 11.30 am. Take advantage of every little positive.