I Think She Betta Do! 

After I spent yesterday considering my usage of spoons I decided to spend today being decidedly more selective with my spoon usage and being more selective with my activities. Low and behold some of these things seemed to coincide! 

I love to be creative, especially with make up, especially on others. So while I gave my friend an ear to bend today after her doctors appointment she gave me her head to play around with! I don’t think we stopped smiling and I’m positive we outdid Kenna Kitten on her sass meter. 

I am definitely not used to Afro hair; Kitten here has a nice mix of cauc and afro realness and she had some warm blonde ends. So we slapped on some Live Ultra Brights purple on the pre-lightened bits with a moisture depositing conditioner mixed in because, no-t-no-shade, those ends were fried; ain’t no thing but a crispy chicken wing! Then topped that off with an all-over pro-v conditioning treatment and a sleek blow dry! 

  
After that I did a quick make-up look. Seriously, her skin is beautiful, she needs no base what so ever! I created some subtle purple smokey eyes with my Make Up Revolution I ❤️ Passion and Salvation: Give Them Nightmares palettes, sticking to the purples. I kept the darker shades and a pop of purple irredeccent shadow in the inner and outer corners of the lid then put a light purple shimmer on the centre lid. I drew the purple irredeccent colour onto the lower waterline then blended in some darker purple shadow in the lower outer corner. I added a sweep of mascara and a slamming purple lip from Revlon; Va-va-violet and Violet Lip Lava by Cover Girl! Little flush of Lancôme Blush Subtil Rose Paradis to bring out those gorgeous cheeks and…done! 

  
LOOK at that smile! Selfish selflessness was achieved! 

My girl, Kitty, is having a hard time of it lately and I am happy that we could give each other a boost today. She didn’t need any make-over at all. She is one of the most beautiful women I know in real life. 

  

  
See. 

But sometimes it pays to have some focused attention, taking care of something that is often forgotten; the physical body. There is a reason why skin to skin contact it so important to babies; it is the most visceral demonstration of love and appreciation. Taking care of someone else’s physical presence is just as important as listening to them. It allows you to demonstrate a level of intimacy that can’t really be shared any other way. Consider this when you reach out to hug your friend when you see them after a while or when you grip their hand when you comfort them or they comfort you. Doing make up and hair requires focus on the individual, every face is different and every person has a different threshold for touch. It is a very intimate experience, someone trusting you with their skin and their physical appearance. Some say that it is relaxing, that it feels nice to be preened; and so each brush stroke is more precise. Some find it quite stressful because they’re not sure what they’re getting or if it will look right so they may need gentle direction and softer brushes and more reassurance. 

I’m not saying that doing someone’s make-up is going to save their life; but it will certainly show them that they are worthy of your attention and gentle touch. Baring in mind Kitty is the same girl that I told to grow a pair of balls and take control because she better fucking werk her sass if she wanna live her life to the fullest. Hey….I am a fan of the tough love! I can’t be a softy all the time! 
I shall see you anon,

P. 

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Sing Somethink Simple 

I met a remarkable woman today. She had the most amazing charisma and style (and no I wasn’t conversing with my own reflection). Let’s call her Alison McCreedy and, boy, did she make me feel like I could conquer the world.

Nothing makes one so humble as to be stripped of ones natural ability. Ms A McCreedy had lived through many trials in her life; losses, pain…you name it, she had the t-shirt. She talked openly about her illness and the whole time I couldn’t stop thinking about how amazing she looked and how full of life she was. I have to admit I felt a tad disheveled in the light of her confidence but, as I said, something about her really fuelled my fire.

Ol’ McCreedy does so much work for charity and for the Portsmouth City Council (as thankless as she told me it could be) that it certainly gave me a positive outlook on life! 
Ms Creedy and I had something very much in common…other than our ability to cause giggled with abject sarcastic bluntness. She was a fellow Spoonie with fabulous frosted pink lipstick and a bang on trend thick knit poncho! Utterly fantastic wit and shameless frankness of expression that was as refreshing as it was startling! 
But what was the most interesting was her undeniable passion and energy; needless to say we both agreed that we have our bad days. Meeting her today, on a day when I can feel a crash looming, was a subtle reminder that I need to use my spoons wisely. Whether that be to raise money for charity as she does, write essays for university, write a blog post or even just do my friends makeup or make them dinner. 
I sometimes waste my spoons on the most ridiculous of things; listening to a friend rant for hours about something I’ve, no doubt, listened to them rant about before for hours. Offering my abilities to others before considering how I could be using them to benefit my situation. Fighting DWP for a decision I have no control over. 

I have a friend, we’ll call her Riley. And Riley was giving the pasta a stir this evening and reminded me, as Mr Panda has, as my mother has, as my sister- in- law has; I need to take care of myself! So maybe now that Ms McCreedy, the scintillating stranger in Tesco, has set an example for me I can start looking into how to use my spoons to benefit me…and, in turn, that might benefit others too? Maybe. What use am I to others if I can’t take care of myself first. Possibly I should work in reverse of the old saying; I should do unto myself as I do unto others. Tell myself off when I push myself too hard, have a sleep when I’m tired, accept some limits but push through others, maybe even wear the slutty dress when I feel like a male mammoth in drag.
In other news…I got a kitten. But more about her later! 

To be continued.

Let’s Talk About Somethink Serious.

Disability is a curious object. And I say object because I don’t yet associate my crutch (no matter how sparkly) with my physical ability to get out the house. It’s somewhat like an impermeable glass box that one sits in, looking out. You have no choice at to how you are viewed or how you are responded to. On the off chance someone is paying close attention, you might be able to write a message on the glass in spit and breath on it…but even then… Your message can get lost. I speak for myself here, obviously. Curiouser and curiouser, said Alice, is the way that others view me, friends close to my heart that I have known for long periods of time. People whom I have known for the most intimate and most fragile of moments.

Panda is a prime example. Being a tad “perculiar” himself, he is a creature of habit. He is very used to me being a certain way mentally but, above all physically. I have had my crutch for 3 months now and, yet, it remains an anomaly which is, somewhat, irrelevant. Asking for help to get out of the bath is seemingly lazy. A mix up of words is idiotic. The crutch is a take it or leave it accessory. Thank god the man walks so slowly otherwise it would be another irregularity that the time it takes to walk from a. To b. suddenly doubles. He is the most prominent of examples I have.

Curiouser still is ones own understanding of oneself. Who am I; how do I deserve to be treated, how much pride is too much pride and how much self-consciousness is too much, how little assumption is not enough?

I am currently navigating a map of re-self discovery. Where once I could confidently stand and walk alone; I have to accept my limitations. Where once I could assume the best; I have to explain the best. Where once I could accept the norm; I have to persist on the abnormal. And I mean no disrespect to those whom understand their existence within “special needs” or “disability” or…see…I don’t even get where I stand on how to refer to myself!?

Anyway, I do not mean to disrespect others whom see their existance as the norm for them. It is not the norm for myself.

I worked 20 hours a day, I cycled 4 miles a day, I did a full time uni course, I swam regularly. Only 8 months later, I have to notify my best friends when I’m gonna fall over if I don’t sit down. I have to ask my lecturers for a spinning chair in case they move beyond my line of direct sight. I have to ask people to repeat things several times a day. I have to explicitly say to people “please stop because I can’t keep up; don’t leave me behind”. I have literally urinated down my leg in front of my best friend due to standing too long and having my lady-garden go curiously numb. They are so used to who I was before. Because they’re not used to who I am now. Because I am not used to who I am now. I am as much an aggravation to myself as my infuriation must be towards others who can’t read my mind.

Going from who I was to who I am not really is demonstration of: “you don’t look sick”. Sometimes “I don’t feel sick”…but it’s because, before, I wasn’t. Before, I could go from sitting to standing without wondering if I would piss myself.And it’s the first thing that jumps to my mind.

But I am sick. I would dearly like to remember that on the days when I’m feeling too proud.

“I am sick.”

Sorry for the Debbie-downer, lads. But it’s not all laughs and chuckles! 

To be continued.

P.

Thinking In The Purple Rain. 

Here’s a make up post for you! I keep my promises….unless it involves money. Don’t tell Portugal where I am…
This is one of my fave eye makeup looks at the moment! It’s a mixture of warm and cool toned greys with a blended open wing and soft cut-crease. 

  
I always start with my limecrime primer. Now…I know there is a lot of controversy surrounding Lime Crime as a brand…but I’m a drama queen so I’m wearing a dramatic primer. Plus! It works! I used shadows from the “I Heart Passion” pallet from make up revolution for this look. First I used the lightest matte purple on the lid and then blend in a darker, cooler grey into the crease ensuring that it doesn’t meet at either lash corner at the lash line. 

It might look a bit ridiculous at the moment…but bare with me. I took an the even darker grey and blended that into the outer corner. I had to keep reminding myself to NOT RUIN THE CUT CREASE! Considering my hand was twerking more than Nikki Minage’s asset, this was a mean feat! I added a light, warm brown to transition to the lid then blended the buggery out of it with my fluffy brush. Then a wee dot of shimmery white in the corner; a matte ivory on the brow for highlight and tight line the upper lash line with a black liquid liner with a discreet flick at the outer corner. I blended a small amount of the darkest grey under the lower-lash line 3/4 of the way along; no more than that because I’m not a raccoon and I’m not a fan of Black Veil Brides. I used waterproof mascara today as it was chucking it down AND my eyes were super dry so I was expecting some environmental tears. 
  

Face-base began with my primer by Bare Minerals. After popping on my foundation and concealer … Or Wall filler (I had some serious sleep baggage this morning), I gave my self a brush all over with my Stay Matte powder in Pink Blossom. Then I contoured my cheeks, jaw, under lip and nose with my sleek contour pallet in light. On the lips is Make Up Revolutions Atomic Lipstick and Lucious Lilac Grape shimmer lipgloss by BYS (who ever that is?!).

  
The only thing I’m not keen on is the blusher that is too warm and rouge-y so I’m not gonna tell you what it is right now. I need to get something more purple and cool. Highlighted with my Sleek pallet from before and BOOM! Done! 

  
If you want me to some more of these makeup-y type things then let me know! 
To be continued,
P. 

Think Outside The Information Box 

Well, hello there! 
Being a Disabled Student is a very interesting experience so far. Even more interesting when you have a very recent basis for comparison. The obligatory “oh, what did you do to yourself”s or the awkward offers of help from people whom you’ve shared lecture theatres with for the last two normally abled years; those things have a sense of humanity about them because usually they take the form of interactions with humans…depending on the disability, of course…I once saw a man having an intense conversation with his lunch and I like to keep an open mind. 
My interest doesn’t stem from the well-meaning empathy of fellow students, no. It is the cold hard steel of the hoops one has to jump (something I don’t find easy ) through in order to obtain the reasonable support as a disabled student.
University is stressful, you know. In fact, in my experience, it should come with a public health warning. They could have it flash up as you press ‘confirm’ on your UCAS application like one of those error alerts: 
Potential Student, you are about to commit to 3 to 4 years of emotional turmoil, financial strain and borderline psychosis. Are you sure you wish to continue?
It’s a firm, fast shove into “adulting” and this opinion is coming from a mature student of 26. I’m also pretty sure that it causes some sort of Stockholm syndrome as this is my SECOND degree.
I am joking, of course. university can be one of the most exciting, enlightening and enthralling time of your life. Nowhere else will you be able to establish how much you can function after how much drink and how little sleep, debate with people twice your age without reprisal, and contemplate all the other careers you could have chosen that didn’t involve writing 2500 word essays that are due in 12 hours. You make friends who will be more intimate with your body parts than your own mother, and you realise that Netflix is the cheapest holiday you’ll ever take (chill or no chill). And at the end you will have a degree. A really good and useful one given the appropriate support! 
Before my CFS, support came in the form of cake and movies, a blue wkd with karaoke on a Friday night at the Union and really helpful library staff. 
Not much of that has changed out of those activities (aside from the amount of cake and alcohol consumed, and possibly the amount of time I spend in the library) but now we can add to it how I get to class, what I do in class, how many books I get out, how I write my essays, the way I sit, how often I go to class, what I do if I don’t get to class. And them hoops? There are loads and they’re razor sharp and spinning…and on fire…and they change size…and some of them are really slimy! Seriously, if a dog was jumping through them; it would be on the live shows of BGT! 
Okay, no. They’re paper hoops-forms. We’re talking forest’s worth! But there are fricken hundreds of ’em. And filling in those microscopic boxes when you’re shaking more than Taylor Swift…well…no one would pay a ticket to see it. Okay, they would if they really didn’t like T-Swizzle. But it’s arduous, flailing and involves a lot of screaming in frustration…actually quite similar to Taylor Swift. 
I find it remarkable that, in order to get support as someone with enough significant differences to warrant additional support…they certainly make you put in additional effort, more than double of the average student! Oh what cruel irony! 
However, once you’ve done some significant leg work, you do get yourself into a place where there are many people and facilities available for those applying for DSA who genuinely want to make sure you are provided for appropriately especially if you are honest and open regarding your abilities or even lack there of! And I’m not just talking about the official folk! I had a massive amount of advice from a certain postgrad student who is part of my instafamily regarding my needs assessment! It really boosted my confidence when she advised me that the assessor is there to help me and not to trip me up as I had feared! 
Aside from my PIP claim STILL remaining undecided and the usual CFS nonsense, I’m really looking forward to the trials and successes of my final year! And I can begin to relax a little and enjoy myself some more! Blue WKD for everyone! 
Shall see you anon,
P.

Something Thinks In Here…And It’s Not My Shoes! 

I’m not too sure Panda understands the term cesspit…but it is the word he uses to describe the place where I sit on the sofa. I’m sure if he were to encounter an actual cesspit then he would be pleasantly surprised that I manage to keep mine looking so homely. 
I like corner seats, you see! They keep my back, thighs and legs supported and I can rest my arm up a little so there is less weight on my spine and pelvis. Not to mention I get the best view of window, TV and hallway (ideal for zombie survival strategy)! The sofa is my comfort zone. On my low-to-no spoon days, it calls to me as a sort of beacon of minimum effort. If I get there then it is akin to climbing Everest; who doesn’t want that claim to fame?! 

Comfort takes on a new meaning to us Spoonies. Okay, I might be speaking for myself- but it’s not about getting all womb-ey in a blanket with some chocolate and some bubblegum fiction. This Spoonie looks for best case scenario which can encompass meds for IBS, easing of sciatica with a pillow between my knees and slightly tilting my head to avoid the room spinning. This pantomime shifts from act to act throughout the day; you should see some of the positions I get myself into. And all in my little cesspit; because we all seek something else that my spot on the sofa provides. Emotional comfort. I’m not sitting on a heavenly cloud but I am sitting on my mother in laws couch. A couch I have been sitting on for nearly 5 years of my life. That is the longest I have ever sat on the same couch in my whole existence. While people come and go and we moved from house to home; this couch sits solid, mildly shredded by cat claws and slightly discoloured and always here.
It is constant, it is reliable…and I’m pretty sure it might rival The Doctor when it comes to regenerative ability.
Yep, you just read an entire post about a couch! Welcome to a low-spoon day! 
See you anon,
P. 

P.s. Stay tuned for a bit of make-up nonsense! 

First think’s first… 

So! I’ve decided to document my final uni year blog stylee! Why? Well I’ve had a bit of a u-turn in my physical abilities in comparison to First and Second year.I’m not going to kid myself here, I was hardly running marathons before hand but I was a wee bit more active than my current record of 2 spoonful-days, 2 rinse-a-ladle days and 4 sorry-you’ll-have-to-wait-for-the-dishwasher-to-finish-days.

I was diagnosed with CFS/ME in August of this year. It was no big surprise to me or a huge change by then as I had been slowly deteriorating since December to the point where I now sport a Ca-dazzled (a term penned by a friend due to my decision to take some rhinestones and hot glue to my mobility aid) turquoise cane to help with my balance and pain in the lower extremities! Aside from the emotional and physical trial of getting up and out of bed this morning I think it’s going okay. Bare in mind that it is only day one and the word “dissertation” is a hazey premonition of my future rather than a Buffy the Vampire Slayer like prophecy.
I met an old work colleague that pointed out a very positive aspect of my life in university following diagnosis; I see a good few people who greet me with a smile and that, in itself is quite wonderful to know with the prospect of some serious isolation on low-spoon days! I even felt confident enough to ask someone to move my chair into our circle for me in a seminar today. This isn’t a someone I know very well but we got along really well…so I guess I can be appreciative of the opportunity to open a conversation with a person I don’t know very well even if it is because I can’t lift a chair! 
I have noticed a significant change in my mental abilities recently; I have a limited tolerance to emotional stress at the best of times…these days, come 11 to 12 o’ clock…it is a zero tolerance what so ever. I struggle to write, listen, think or even see when I have to concentrate on a subject AND am dealing with stress. I had a friend, you see, back in first and second year; let’s call her Cora. Cora was quite a good friend, seeming self-assured and chipper and very open regarding her diagnosis of anxiety. However, sadly, sometimes personalities clash or one person outgrows the other and the friendship turned sour, probably due to a combination of the two. The stress stems from Cora’s reaction to the ending of the friendship through a combination of her anxiety and her once admirable trait of self-assurance becoming a perpetual refusal to apologise. There was no way to rebuilt the friendship…but she did manage to be incredibly insulting and calous regarding some personal issues of my own, along side criticising nearly all of the close friends she had made. You know how you encounter experiences that you don’t respond to because you want to rise above it or simply “not poke the bear” as my father would say. And then, a little way down the line, you think back on things and kick yourself for not saying what you should have said? Yeah, it was one of those. If I had said something I might be able to sit in the same room as her… But now, when I even hear her voice, my mind shuts off and I literally go cross eyed. 
It’s not something that I’m used to because it has only recently started happening. Like, when a car comes too close to the passenger side, when I think about deadlines…I seriously think people must think I’m a cartoon character; pink-haired, funny voice (I’m a Scottish girl, who sounds American or some sort of European, living in England) and cross-eyed with silver shoes.

Thankfully it currently looks like I am not in any seminars with her so far. It’s not healthy but on my worst days Cora comes to mind and I can’t help but feel bitter. But let’s not go into the ‘why?’ now because today is a good day! I’ll save it for a less diplomatic, more furious post!

I wanna talk about my own stigma which I’m trying to challenge at the moment; the difference between pity and compliments. Since I got my ca-dazzled cane, I have become more aware of people commenting on my appearance. It’s not that the comments have been bad. In fact, the reaction to my hair and clothes have been somewhat positive…but, for whatever reason…I immediately consider why they have said anything and, immediately, I think it’s because I’m so pathetic with my stick that I need reminding that I have something else going for me. It couldn’t possibly be a genuine compliment! I have a heightened sense of nervousness around my looks. Whereas before I didn’t really care until I made an effort and then I would just want to share a new lipstick or a new hair technique. Now I make the same effort but seem to want to be ignored because I question the sincerity of admiration.

Why do I mention this? Because today I’m seeing people I’ve known for a long time or encountered every so often for the last few years and the compliments seem to be sitting different. There is a refreshing bluntness or humour surrounding my cane…and then a frank and complimentary mention about my outfit or my hair of my make-up. So it’s definitely something about strangers… But, then again, I’ve always been taught not to talk to strangers! 

Particular attention was paid to my shoes today! They were a cheapie purchase from Missguided at £4.99 in the sale and I wasn’t sure the pointy, metallic lace ups would go with the whole 70’s vibe that my denim button up a-line skirt and Chelsea Girl top had going on! But for a lack of a more suitable, less trainer-like flat shoe, I made a judgement call…payed off as they certainly made a positive statement! 

  

K   
 I ordered a wee Cape coat that I to arrive from eBay, and foldable cane as my physio says it will be good for stronger but less sciatic/painful days! So I may be channelling some Jack the Ripper chic but it will be a chicness that my casual GAP cargo jacket doesn’t have! 

  
Like I said, making an effort had a different before I began to get ill; it used to be something I took for granted. Make-up and clothes, as materialistic and vain as it sounds, make me happy and are a very personal representation of my creativity! And, to quote Ms Carrie Preston née Bradshaw, “shopping is my cardio!” Now they take on the role of expressing my vitality or lack-there-of. Whereas before I could put on any old bra on any old day; I now have to consider how restrictive it feels on my chest, if it is one too many layers for my body to regulate my temperature, if it’s going to be too snug on my back for my sciatica. Can I wear my skinny jeans or have I become full-term pregnant overnight due to IBS so I only fit my boyfriends sweatpants? I could shower but the effort would empty the cutlery drawer so bodyspray bath it is! I know this seems like I have a preoccupation with physicality here but CFS can be quite physical thing…and this is a very accurate depiction of the “you don’t look sick”. 

Im gonna im-Parton some wisdom; it takes a lot of work to look this neat (see what I did there…with a Dolly Parton quote…no? ?..I’m not even a Dolly fan…pity me and my bad puns.) Even on the odd day when M.E isn’t beating my ass so hard, mustering the physical energy to get out of bed is akin to solving world hunger…never mind the super-human feat of getting dressed. To cut a long story short, before you assume that I “don’t look sick”; judge the book by its cover. If I look like a slob, as vain as this is, I’m very, very sick today. If you don’t see me at all…it’s because public nudity is a crime and my body odour has reached a state of toxicity! 

I know that this has been a bit of a mish-mash of a blog but it’s been a day of firsts…so you’re kind of getting the “first thoughts that come into my head” sort of blog! I hope to be a tad more linear with it next time! I’ve gotta go and swallow some penny sized pills now- yummy, yum, yum! B12 in my tum!

To be continued! I shall see you anon! 

P.