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

One Year On

I have had a very bad year – the worst one, certainly health-wise. Due to several flares of my various conditions I had lost my part-time education job, was unable to take up a Masters course that I have wanted to do for years, lost my car that I had also waited years for and there were also family struggles to contend with. My pain increased and became unbearable. Due to last years tsunami of events I developed depression and anxiety. I know that, sadly, depression and anxiety are quite common amongst those of us with Chronic Illnesses and Chronic Pain but this was the first time I had suffered them on a severe and clinical level. Despite my rational brain telling me that it is a common experience and diagnosis and that there is no shame in having those conditions I still felt too uneasy about mentioning it on my blog, of saying it out loud.

I have not posted for almost half a year due being uncomfortable about what to say. I wanted this blog to be a positive and light-hearted space that I, and hopefully a few others, could escape to that focused on the ‘lovely’ side of things. However, I found that I couldn’t face writing as my mood was so far from what I wanted to create and nurture on my blog that I felt I would’ve been a fraud if I tried to carry on as before. I also felt ashamed about cowardly avoiding the topic of depression and anxiety, especially as many on WordPress and other platforms speak powerfully and openly about their experiences in order to support each other and break the stigma attached to those conditions.

I became annoyed at myself as I was happy to talk about my Lupus etc. but when it came to my mental health conditions my reaction was to hide to feel embarrassed. The addition of the word ‘mental’ with regards to illness should make no fundamental difference to the tone of the chronic illness/disability debate, Chronic Illness is just that a chronic illness, but it left me uneasy as I didn’t want to make a ‘drama’ out of it but I felt a bit of a fraud about not recognising these new aspects of my health. In ‘hiding’ I was hindering the great work that many on here have done in educating and de-stigmatizing Mental Health issues and denying to chronicle my ‘true’ experience of Chronic Illness that I hoped would help understanding of our hidden and complex lives. So, my name is Lore and I have Depression and Anxiety, nice to meet you.

Next, I’ll move on to the pretty stuff – beauty boxes!

Oh, strangely,the day I felt able to blog again is the same day exactly one year ago that I started the blog!

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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The Sisterhood of the World Nomination

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The lovely Kira from https://kirabmoon.wordpress.com/ kindly nominated me for this award. A big thank you to Kira and please take a moment to check out her blog. Many of you probably know how these awards work but the rules are that I answer 10 questions and then nominate 7 other bloggers and ask them to answer the same 10 questions.

First the questions:

Why do you have a blog?

I wanted to connect with people and whilst I can be quite awkward in most social situations I am at my best when I can write. I also wanted to show that being sick and disabled is not an ‘old person’ thing, that it affects people of all ages and that those of us that are inflicted by such things want the same access to life experiences as healthy people – especially the fun stuff!

What inspires you the most?

Can’t choose between two so I will have to say animals and literature.

Favourite animal and why?

Again, I’m going to be a chicken and name two – cats and dogs. I have two cats and one dog. I’ve had cats since I was 9 and they are amazing animals, smart, funny, strong and affectionate. Cats also make you work for their love which I kind of admire.

I have always wanted a dog and when I got my health up to a decent standard a few years back my dog Keats was my reward (unfortunately I have relapsed quite dramatically 8 months ago). Keats was worth waiting for! Dog’s are devoted, loving, sweet, and kind. My dog follows me everywhere (I mean everywhere!) and can never get enough cuddles. One of my favourite things to do was to go on walks with Keats but since my relapse my friends and family now have that pleasure.

What is your favourite colour?

Red! Like the poppies which are my favourite flowers.

Do you prefer the ocean or mountains?

Ocean. I love the sea, the sound, the taste of the air, the enormity of it and it’s movement. I’d love to live by the sea.

Tea or coffee?

Tea. I love the smell of coffee but I can’t bear the taste.

How many languages can you speak?

Embarrassingly only one and that is my native language. I’d love to learn French and Russian but at the moment I struggle enough with English.

What made you happy today?

My animals.

What is your dream?

To have a fulfilling career that enables me to travel and have a house by the sea. If I could get paid to write that would be pretty amazing!

What is your favourite food?

Fishfinger sandwiches. I lived off them whilst I was at uni.

Secondly, here are my 7 nominations:

https://effingfibro.wordpress.com/

https://rhosynmd.wordpress.com/

https://peachteapot.wordpress.com/

https://faloolar.wordpress.com/

https://undiagnosedwarrior.wordpress.com/

http://therheumaticrollercoaster.com/

https://zoerising.wordpress.com/

Learning to be social

Our world’s can become very small we are burdened by chronic illness and people can seemingly drift away from you as you become increasingly confined to your house or bed. It can be lonely, frustrating and incredibly dull! As illness and pain snatch you further indoors the world can seem so distant that it can become alien. When your bed becomes your world Earth may as well be in another galaxy. I had no knowledge whatsoever of social media and only really used the computer for shopping and typing. Technology baffled me, I only opened a Facebook account a few years ago and did so reluctantly.

I am naturally a shy person who feels awkward in many social settings so I feared that as there are much more people online I would find loads more people to be awkward around and 100 more opportunities to make a fool of myself. But in January I became sick of being excluded from conversations and wanted to connect with others. I was and still am often confined to bed so the only course open to me was to use the internet to reach out. I had zero knowledge of social media but after looking around I thought blogging would suit me, so one restless night searching for a distraction from the pain I made my first post.

Blogging has been such a source of comfort for me these past months. I love writing and always felt more comfortable in that medium than any other so I’ve felt less shy and felt more comfortable to express myself. And blogging, best of all, has brought me into contact with some incredible people. As I’ve enjoyed blogging so much I started to think about other social media sites as I know many of you bloggers out there have several other links on your blogs to Twitter etc. My knowledge of how such sites work and how best to interact with them is very poor but I decided to give them a go. I warn you that I have no clue what I’m doing but if you would like to follow or contact me any other way there are some social media icons at the side of this page you can click or you can click these links below or on my About Me page.

Twitter: @moderngirlsick

Pinterest:  https://www.pinterest.com/elliesimaginary/

Instagram: https://instagram.com/elliesimaginaryfriend/

My blog will always be main focus but I thought it might be fun to branch out a bit. x

Bright Eyes

Due to my Sjogren’s Syndrome I have a very sensitive eyes. I struggle using some eye makeup and when it’s really bad I can’t wear any makeup around my eyes at all. Everything in and around my eyes can get sore. I have zero tear production so I need to use drops daily and I get eczema around my eyes. As well as this I have concerns over dark circles and redness from the fatigue. I have been given loads of different medical ointments from steroid creams to E45 but the only immediate relief I can get comes from Liz Earle’s Eyebright Soothing Eye Lotion. The lotion uses natural ingredients, the main ingredient being a tiny used in old remedies that was called eyebright (in this instance the old wives new best). The ingredients also include witch hazel water, aloe vera and cornflower extract. It is cooling without stinging and calms any puffiness whilst the eyebright does seem to reflect away any darkness. It is really relaxing when put on cotton wool and laid over closed eyes for 10 or so minutes. I have used it to take off light makeup as it’s very gentle but it wouldn’t take off anything heavy. I am grateful for this modest hero.

http://uk.lizearle.com/eye-treatments/eyebright-soothing-eye-lotion.html?ingredients

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I wish I could be quite so effusive about an eye cream but I am still searching for an eye cream that I can use that gives great results. I have tried creams ranging from a few pounds to £50 and whilst some have been ok I’ve never found anything that makes me go ‘wow!’. I’m using Balance Me’s Wonder Eye Cream at the moment due to having found a deluxe sample in one of my reserves drawers and so far so pleasant. The cream is light to use but keeps the area moisturised all day, I can’t say that I’ve noticed much lift but I have only just started using it. Dark circles are being managed well by the cream so far and it is kind to the skin. The Wonder Eye Cream boasts 99% of it’s ingredients are from natural origin which is something I do try to look for nowadays as I do seem less sensitive to products that are more organic. This is certainly a good cream and one of the best I’ve used but I still can’t find myself able to rave about it – but I can’t really criticise it either. Perhaps I am asking too much from one cream? Most likely my weird symptoms are just too much.

https://www.balanceme.co.uk/face/product-family/extra-care/extra-care-wonder-eye-cream-7ml/wonder eye cream

Oops!

I started a sister blog to this one a few weeks back looking at the social and political issues related to chronic illness and disability but someone has kindly told me that the link I posted hasn’t been working. Oops, this is my fault – I typed it in wrong. Here it is again if you had tried but failed to find it due to my mistake.

https://theillrepresented.wordpress.com/

I hope the link now works. I am no techie and this time last year I would have shied away from anything other than basic typing and internet shopping. I have learnt so much this year about widgets, embedding links, blogging, Pinterest, Instagram etc. but I still feel lost most of the time as I still don’t yet really understand it all. x

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.

Sister Blog

I’ve just made my first post to the sister blog to this one. This blog is all about making the best of being ill, focusing on beauty. My new blog, which will run alongside this one will look at illness and disability on a personal and socio-political level. They are very different blogs so the new one may not interest those that enjoy this one but if you wanted to take a look it is called The Ill Represented.

 https://theillrepresented.wordpress.com/

Thanks for your time. x

[I have edited the link as I embarrassingly typed it in wrong – so sorry, should hopefully work now x]

Hiding in Anger

I have been distant from this blog for a little while as I’ve been struggling with the anger and frustration that constant pain gives. My aim was to keep this blog light-hearted and a little informative. I wanted it to express the small things I enjoy, a means to engage, to escape the bleakness that often encases me. I still aim to keep this blog light but I was unable to rally to the sentiment so that’s why I stayed away. I have realised now that the anger/frustration is a part of my story as a legitimate emotion and to deny it can make things worse. So I have now decided to let the rage out but I will do this on a separate blog as I hope to cover wider areas of concern for those of us with chronic illnesses and/or invisible disabilities, such as politics, healthcare, welfare and rights.

The other blog will be a little more ‘serious’ so that way I can keep this blog as I intended – fun! Those of us with chronic illnesses often have to separate areas of our life off into manageable pieces and have a duality to our characters (often a split between pre-sick and post-sick self) so I hope that this ramble has made some sense. I hope to set up this new blog soon, but first I have to visit the pain consultant tomorrow.