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. 

  

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