ehlers danlos syndrome – new symptom

The other night i had a little scare, a couple of years ago i dislocated my right shoulder, which i managed to pop back in myself on the way to A&E, i was in a cast, then a sling for about 4 months. That arm, obviously, hasn’t been the same since, annoyingly enough its my right shoulder therefore i carry my camera in that hand, i mix with that hand and it’s always being over worked. My boyfriend sometimes has to wash my hair for me, but ive been getting by!

But the other night while sitting on my sofa my arm started to go numb, i started to move it around a bit like how you move when you feel pins and needles coming on, but it grew stronger and eventually went completely numb. The paramedics were concerned i was having a stroke or a heart attack, i told them what i had and they both had to get out their phones and google it. I looked at Dan and just cried, where’s the support? I felt hopeless. They checked my heart, my blood, my temperature, everything, they were very apologetic and very caring but ultimately, i waited it out, attached to wires with a racing heart.

This is just a new symptom, among the others i have to watch out for.

After leaving my job where i was scared to be honest about my health for fear of being treated like an idiot, or, ‘bringing my problems to work’. I swore i wouldn’t let anything or anyone stand in the way of my dream career. My health is one of those obstacles.

But it wont stop me.

I picture myself in my beautiful studio, taking it at my own pace, my clients sensitive or even inspired by my condition,  i have all the support i need and all the love i could ever dream of from my massive circle of amazing friends, family and partner.

 

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Steady as she goes

as of January i have a full time job meaning two key things will change in my life:

  1. I will finally be able to save up and move out of my parents house
  2. I’ll be forced to work through my debilitating illness and have my ‘do absolutely nothing/pain day’ much later than i’m currently used to. This isnt a complaint however.

I’m doing so well, that it feels strange and im starting to doubt myself, typical, that i never appreciate my own happiness when im feeling it.

Usually, a few weeks into being single, i’m flying off the handle, not eating, drinking too much, smoking too much, crying in my sleep and making stupid mistakes, but not once have i looked in the mirror and felt doubt or hate nor for myself or the situation i’ve created for  myself, i’m proud of myself and what i’ve accomplished on my own.

If im being honest, im a force to be reckoned with.

 

Halloweeny tartan wooly things!

I have a hectic, busy job & a chronic pain illness. These things combined make me appreciate the little comforting things in life more than most things!

So, blankets..

Another stall from the Yorkshire Food Festival – all made from 100% wool for extra yummy warmth.

I bought a cute lavender scented heart for my Mums bedroom. They also make lovely bags and cushions in the same style and material. I could easily decorate my house with these especially since its almost Halloween!

Visit their fb page for more fluffies 🙂

 

 

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synonyms: purist, stickler for perfection.

As its my day off I’m cleaning for My mum, preparing dinner and staring blankly at my photography website nursing a cup of tea and thinking.. everything needs to change. Being like this is a burden sometimes.

Anyway, I’ve vamped it up and it looks better, I’ve made it so i HAVE to update it now and then which makes me feel like it isn’t and doesn’t need to be, ever, finished.

This makes me happy! So, have a look 🙂

P.s, anyone reading this, have you ever hired a market stall for your small business? im thinking of hiring an open market stall for a day, to sell prints, books and frames, and generally promote myself. Let me know 🙂

 

 

catching up

I’ve been so busy ive hardly had time to catch my breath, with my illness getting worse im finding it hard to stick to things i originally wanted – but my blog wont suffer, i promised myself.

Ive graduated from uni,well, not officially, the ceremony is on the 14th, im excited but also want to have it over with. I wish my attitude was different but being utterly skint has become the norm and i want that to change asap! I have a promising job interview in the next or so 🙂 we shall see.

Ive been vamping up my site, im using it as an extension to my CV, its: http://www.alicecatherinephotography.com and its the only thing thats consistent in my life at the moment.

I  have a referral to see a rheumatologist (should probably learn how to spell that) and he/she  is going to give me a firmer diagnosis, im pretty excited about it to be honest, finally get some secure help and proper advice – you know a nurse told me to ‘have a bath‘ instead of prescribing me the pain meds i desperately need? a fucking bath? 

any way, with all the stress of moving out of my student house -(FYI, SO happy to no longer be a student, not happy to miss out on all the discount, but oh am i glad) cancelling bills, paying surprise fee’s, you know – grown up stuff. I suddenly remember that all the worries can temporarily go away while my camera is in my hand.

to whoever is reading (hi, and thankyou) but remember theres more interesting stuff on its way, reasons:

  1. i recently discovered Lush = hauls, reviews & photos of me smelling stuff
  2. i started an online shop to sell prints so ill be shamelessly plugging my work via wordpress
  3. alot of stuff is happening in my adult life, ill be complaining or celebrating, either way, itl be entertaining.

alice x

ehlers danlos, a stunt in the growth of my life.

I’ve been posting about my illness, inconsistently (unfortunately i find it hard to stick to things, other than sleep) for years, i used to list my pain strength daily, but then i realised it was making me feel more disheartened rather than relieved.  Since my last EDS post ive had two minor operations, several days spent in bed and many dislocations and plans cancelled. When i was discharged from physiotherapy i felt stronger and hopeful, i ignored the fact that what i’m living with WILL get worse whether i fight/ignore it or not. However, my symptoms have both changed and worsened, i have a heavily inflamed and very brittle tail bone and hips. This is the cherry on top of the fear that ill never be able to/ will find it extremely difficult and life ruining to have a baby.

In some ways, the physical pain beats the constant, nagging guilty feeling that my genetic mutation is stopping my innocent other half to starting a family.

It isn’t his fault, it isn’t anyone’s fault.

 

ehlers danlos diary 12/07/2015

my new job, even though, im VERY excited to get paid, is killing me! the pain is terrible, however, it gives me a very good reason to stay in bed all day, and i feel every bit of pain i have i, in turn, become stronger both mentally and physically.

pain levels:

ankles – slightly swollen, clicking, 1/5

knees – feeling loose, 3/5

wrists – fine.

shoulders – craking more than usual, feeling loose, 2/5

hips – better. 1/5

legs – my femur bones keep locking and cracking, 2/5

back – lower pain, aching, cracking, weakness feeling. 4/5

anxiety/mental stuff:

i feel much more relaxed now. i have a few days off work, getting paid next week. i no longer feel anxious and guilty for staying in bed, having long baths, never putting on makeup and taking care of myself.

however, me and my other half havent had sex in a couple of months down to my legs feeling weak and my medication killing my sex drive.. this is a worry. but he understands. i love him so much.