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.

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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.

Down but for the animals

I will keep this brief as I don’t want this blog to be full of woe and i’ll just write this post as a means to explain my absence. I’ve been off work since October 2014 due to a massive Flare but without warning work sent me my P45 (terminated my contract). I was devastated as I spent many years building my strength so that I would be able to work and for three years I had managed to do so (even if only part-time) but now I have had to go back on state assistance and I hate it! I’m still unable to work so I feel completely useless. Crafting is my cling-to activity when I’m flaring as it’s a good distraction from the pain and I can do some form of it even when I’m in pain but its been so bad recently that I have only just this week-end been able to complete small projects. Despite being unable to craft the one or (three things) I have through the dark days and sunny nights are my animals. They always watch over me and Keats (my dog) is especially good at stroking my hair and head when I can’t sleep for the pain (he literally does that). So here is to the animals!

Number 1 on The modern Girl’s Guide is get yourself something cute and furry (even if it’s just a cuddly toy).

These are my fur babies:

Keats

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Bronte

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Elliott

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Wipeout

I have been unable to post due to a worsening of my symptoms that has seen me back and forth at the hospital. My rheumatologist has left and I’ve been stuck with a locum so cue frustrated exchanges – it takes so long to train up your doctor these days! Anyway I’m awaiting referral to the pain clinic but until then more rest and wait-and-see. If feeling rubbish was bad enough my computer passed out and wouldn’t wake-up, my phone died and my new tablet decided it didn’t want to work in my area. After several weeks and tweaks everything, touch-wood, is working again.

To Tone or not To Tone?

I have talked about how much I love Liz Earle’s Cleanse and Polish it is my one constant. Whilst I’m forever altering, tweaking or completely overhauling my other products and regimes I always use Cleanse and Polish even when I’m really ill it is one thing I insist on being able to do. But one thing I almost never do is tone. A toner is not part of my regime – is this a terrible a thing to admit?

When I first started reading beauty magazines in my teens the skincare mantra was cleanse, tone and moisturise, but that instruction is surely out of date now. Serums would have to be added, so would masks, eye creams/gels, lip balms, topical treatments etc. Skincare has advanced, yet when it comes to toners I feel that have stalled what is the point of them now, was there ever a point? Toners were supposed to remove the last bits of cleanser, close the pores, prep it for the moisturiser but any good cleanser wouldn’t need a toner to clean up after it and serums have far more functions and benefits than toners – don’t they?

The main reason that I don’t use toners is that they were generally awful when I was starting out in skincare and I came to see them as an uncomfortable and unnecessary expense. Most toners need to be applied with cotton wool and I hate cotton wool. Even cotton wool is scratchy and irritating to my sensitive skin. And the toners were mostly contained alcohol and left my skin tight, tingly and damn right sore that I came to hate them and whilst toners have improved I still can’t bring myself to like them. The Liz Earle toner has a gorgeous fragrance and is calming on the skin when used as a spritz in the summer but I don’t even like using that as its primary role as I don’t see a difference. The Elemis Apricot toner is quite pleasant to smell and non-offensive on the skin but again I feel no benefit, no motivation to use it in my skincare routine. I would rather use the money I save on a toner to pay more for an excellent serum or moisturiser. So am I missing out? Do you tone?

Masking your Woes

I think if there is one thing that unites all of us with chronic illness(es) it is disturbed sleep: too much, too little, too heavy, too light – we can rarely get it right. Poor sleep is synonamous with poor skin, which is unfortunate. Beauty brands capitalise on masking a bad nights sleep with various ‘anti-fatigue’ related products and test their products on a sympathetic pool of volunteers. Well, if a brand really wants to claim to be ‘anti-fatigue’ they should try it on us! If it works on us it truly is a miracle cream. It seems, however, no brand has been brave enough to take that test which is a shame, as if there ever is a group of people that would appreciate a great product it would be us. And if it works on us it would work on anyone! I guess we’re too big a challenge.

Whilst waiting for the miracle products to take away any sign on our skin of the suffering we feel there are some products out there that can and do make a difference. And sometimes, just the promise of a skin benefit can lift the spirit (a beauty placebo). So whilst this blog may never discover the dream cream it plans to share those small comforts and joys to be found in taking the time to care for your outside, to distract from what cannot be controlled in the inside.

I hope this makes some sense. I haven’t slept.

It’s all about the base

I’m a firm believer that the best base for make-up is good skin but good skin is so hard to achieve when you’re sick, tired and being pumped with various medications, which for a quite a few of us is a daily occurrence. I had no real interest in skin care, no routine other than soap and water (soap? – I know!) but that changed when my symptoms started when I was 20 years old. My skin came out in rashes and became super-sensitive to even the lightest of touch. My skin was extremely dry and very flaky especially on my face. Make-up only accentuated the dryness and my confidence was punctured by it all. Suddenly I cared about skincare because I had to.

Being a practitioner in the belief that knowledge is power I set about to find help. I tried different things, from premium beauty to high-street chemists but nothing worked they either stung the skin, dried it out or made it too greasy. I researched what I could online but only became more confused. I could never work out what type of skin I had as my skin had multiple personalities so finding the right products was nigh impossible. Then I came across QVC and Liz Earle’s Cleanse and Polish, a product that literally saved my skin. I was ambivalent about trying it at first as being a newbie to the beauty world I hadn’t heard of Liz Earle but feeling secure in QVC’s incredible 30 day money back guarantee (even if you’ve used it!) I took a chance.

Cleanse and Polish suits all skin types so whatever mood my skin happened to be in it adapted to it. It was gorgeous and so gentle to use and because you use a damp cloth it was something I could even use myself if I was stuck in bed provided my Mum had wet it for me in the first place. When I went into hospital it was the first thing I asked Mum to bring in from home when I was taken in as an emergency admission (at 11 pm) and it was comforting to know that I had it with me to soothe my skin (a bit of calm amidst the turmoil of hospital).

Cleanse and polish made and continues to make my skin clear and stable which makes the use of serums and moisturisers more effective, it also made it possible for me to wear makeup again. So whilst I still get some Lupus rash it doesn’t show or feel anything like it was. Good skin like many things starts with a clean slate.

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Unsung hero product – Nails

When it comes to the wonderful world of nail’s nearly all the focus is on the polish. This hardly surprising as you would rightly say that the polish was the whole point, it’s what we see and others admire but inevitably there comes a time when what goes on must come off. It is this removal stage that often gets neglected yet it’s a quite important part of the process as a good remover can help nourish your nails and take off the polish without causing any damage or staining which keeps your nails looking good when you go for a new colour or finish, they clean up mistakes with an aid of a cotton bud and a remover that works quickly and without mess means we can enjoy different looks easily. By making anything easy and fuss free means we keep enjoying the process and as such do it more. A good remover enables our nail polish addiction to be fed.

I was asked through a friend how I managed doing my nails even though I have Lupus. A girl had told my friend that she used to love having her nails done but due to touch sensitivities she couldn’t bear or manage the scrubbing action to remove the polish. My answer was nail remover pots. They are not a new product, they’ve been around sometime, but it seems some people don’t know that they exist. Remover pots take the fuss and effort out of removal and Nails Inc.’s and Leighton Denny’s in particular have essential oils that are kind on sensitive skins and Bourjois’s, though not as gentle in the smell department, does both toes and fingers. Remover pots may just turn out to enable some people to come back to the wonderful world of nail polish. They may just be someone’s beauty hero.

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The little things that add up

I started my nail collection when I first got sick and had to move back home. I was housebound for 90 per cent of the time and I didn’t have the strength to do anything with my hair and my skin was to sensitive for makeup so I focused on my nails cheering myself up with colours and textures and its something you can take your time over and do in bed. Also the one plus point about not being able to do anything is that there is nothing you can break a nail on. I think it’s testament to how long I’ve been sick to how many polishes I have but sick or not there’s many a harmless joy to be had in those colourful bottles.

Too many bottles?… Never!

Nails Inc.

Ciate

Leighton Denny