ENMG and TMS and OMFG.

Ugh. Today I had to go through the annoyance of having my neural pathways re-examined and the horrifyingly disgusting feeling of having magnetic impulses sent straight into the part of my brain that controls body movements.

The ENMG is okay, it's only slightly annoying. But the TMS thing, oh my god how I loathe it. This was the second time they did the TMS procedure and I was feeling really fucking anxious beforehand, because the operation had caused my EDS aches in my limbs to flare up really bad back when I was still paralyzed and in hospital. This time it felt slightly different, probably due to my legs working again, but it was still terrible. I could barely walk afterwards. Luckily I had my walker with me and my darling husband there to help me. And my painkillers ready and waiting for me in my bag.

There is something SO horrible with magnetic impulses and EDS combined. I still feel like there's a magnetic storm going on in my head, my arms and legs ache and my back, well, let's not go into that, because that would not be pretty, were I to describe how my back feels right now. LOTS of cursing, that's what it'd be.

Anyway, I got them examinations done and hopefully never have to go through the TMS again. 

Had to buy cigarettes from the hospital kiosk and have a couple of fags afterwards.

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What do I look like every day? Gorgeous, of course.

I refuse to be disabled and LOOK ill.

Fuck no, I don't give a damn about what others think of me, seeing me taking care of everyday things with my walker and my gorgeous outfits.

my style blog post

Numb.

Thursday already? Yesterday I came home from a week-long stay at the hospital. Again. Sigh.

On January 2nd my back pain was so severe even my strong painkillers didn't help and I had to drag my weary, achy arse to the first aid. I couldn't walk much at all, my right leg was partially paralyzed. What a joyous feeling that was, I'm sure you can imagine...

Anyway, they took me into the neurological ward and there I spent a hellishly long week, mostly bed-bound with a bad flu and high fever. Something good did, though, come out of the ordeal, but it wasn't exactly my doctor who came up with a solution to the hurt-y situation but me, mom and my husband. An injection of strong muscle relaxant to my butt had helped ease the pain when I was still in the first aid unit and we asked the nurses if they could give the injection again and they did and it helped, again.

Turned out that that particular med was also available in a pill form and those I continued to take when the pain got real bad and it was such a relief mentally as well, finding another way of easing my anguish, other than the bloody opiates I've been taking for a while now since nothing else helps. 

There's a problem with having terribly strong pain and being a young person with tattoos.

I'm sure you can see where I'm going with this. I'm scared stiff of getting labeled as a pill junkie who just wants stuff to get high on. That couldn't be further away from the truth. I don't even drink alcohol, forfucksakes. I've only ever tried cannabis when it comes to illegal substances and that was eons ago, too. It's only been with these awful aches and pains that I've unfortunately grown to know opiate painkillers, for example. The first time I was introduced to them was back in January 2011 when I broke my ankle badly, got a nerve damaged during a surgery and was in helluva pain because of said damage. I spent couple of weeks in hospital then and was given strong chemicals for my pain. 

One moment in particular I doubt I'll ever forget is the first time I knew no-one believed me and the heaviness of the situation with my pain. A nurse came to the room after I'd called for her, to ask for more painkillers because the last one hadn't helped one bit. She told me that she wouldn't bring me the pill, because "I don't believe you are in pain, you can't be because you just got a painkiller. You can not be in that bad of a pain". Gee, thanks dude, that's just what I needed.

The same went on and on and I felt so happy when they finally examined my neural system and found a fucked up part in a nerve in my leg. Then and there I had it in black and white, that I was indeed in very much of pain and that it was all real.

Well, back to this day, I don't have turquoise hair and a ring dangling from my septum anymore, but I do have even more tattoos now. So I must be an idiot, just complaining to get shit and get high.

Fuck you, all of you who don't believe me.

See, now there's a new thing in black and white and that's a diagnosis of Ehlers-Danlos syndrome in my mom's medical records. Q79.6 and that means that I, too, really truly have this condition and that means that I am indeed in real pain. In my records my diagnosis is still Hypermobility syndrome, but it'll change as soon as I can drag myself to see an EDS expert, the one mom saw this Monday. It's all becoming clear and official and it's both such a relief and scary a thing, because now all these different symptoms are real to the world around me, too. And this is a condition that there's no cure for and it's reality.

Anyway. What a rambling of a post this one became. Oh well. I'm back home and hopefully am able to stay out of hospitals for a good while now (I do have lots of examinations coming up, but for them to be done I don't have to stay overnight in there).

I hope I never ever have to cry and beg for something other than paracetamol for my pain, because paracetamol doesn't work for me. At all. Neither does ibuprofen. They don't cure headaches, they are of no help for my menstrual pain. And they certainly are of no use when faced with the aches having to do with EDS.

Hell, for the horrifying pain in my bones, the ones I've had for ten or so years, the ones I live with every single day,

NOTHING helps. Nothing, not even the fucking opiates.

I just might be a bit pissed off with medical staff right now. Well, with a "doctor" whose hands I was in for the last week. Merja, I hope you never ever treat another patient with such a lack of belief or respect.

Merja, you might as well sod off.

Ok, I'll stop before my head explodes.

Those little things that help with everyday living (part I)

Today I felt like writing about mundane, small things that help with coping with everyday life when one has a condition that makes living difficult, such as EDS.

Like I've written before, I have trouble with my hands and forearms aching like hell and thus having a hard time with all sorts of things that need to be done round the house etc. I also have a problem with being a stubborn creature of the worst kind, if I may say so myself... Stubborn in a way like: "I'll manage by myself", "fuck it, I'll carry this and that myself (even if I know it's nearly impossible)", I'll walk, fuck taking a taxi", "I don't need help", "I'll promise myself to do this and that and whatever in time for this and that and I'll do it even if I know it's not possible, fuck it I'll manage, I'll have to manage" and so on.

A real stubborn one, me. But now that I've gotten my diagnosis, I'm starting to try and learn to take things more... seriously, responsively, thoughtfully... um, realistically (oh how I dislike realism, me, hahhah)? Give things, the smallest of things, a bit more thought before rushing head first into doing something. It all boils down to admitting to oneself, that I am not capable of doing all and everything I used to be / what other people are able to do. And hard as it is already, admitting one's decreased capabilities to oneself, being a stubborn arsehole such as I am doesn't exactly help with this whole accepting things as they are -business.

So. It really is a thing that has to be taken care of, the admitting part.

Here are some examples of the small things in daily life I need adjusting with. Okay, first one that comes to mind is making coffee. Lifting the coffee pot, filling it with water, pouring the water into the coffee maker bla bla bla. If I am merely making coffee for myself, the amount of water needed is not much and so the coffee pot when filled with the right amount of water is easier to lift. But if I'm making coffee for more people than just myself, I have come to realise, that it is very much easier to manage with the whole water process-thing by taking following steps: 1. filling the pot little by little, not pouring the whole lot of water into the coffee maker at once; 2. taking a steady grip of the coffee pot with both hands. Makes things a whole lot easier, doesn't take much of extra effort.

Same with filling a bottle of water for drinking. See, in our household we prefer to drink water from bottles and the reason for this is our four enthusiastic and playful cats. Whenever they see a glass of water, they proceed to try and drink from it, throwing it onto the floor, you know the deal I'm sure. So bottles that can be carried around and most importantly be closed so that there's no threat of spillage in case a cat comes near enough. Aaaaanyway, what I was originally wanting to say is this: I refrain from filling my bottle full (it takes 0,9 litres). Genious! Hahhah. No, but seriously, I'm such an over-achiever that even if my hands ache like motherfuckers and I can't hold even a light whatever sturdily enough I go about filling the bottle and then trying to carry it with me in ways I can't even begin to try and explain. No. That's come to an end now. Half or two thirds is good enough for me now.

Other things I do to make my life easier include and are not limited to:

- I have a plastic little chair for me to sit on while taking a shower if I feel too weak to stand up

- I use walls, bookcases and what ever sturdy enough vertical surfaces there are near me to help support myself on

- I am trying my hardest to not do things that need usage of my hands and fingers whenever they ache too much (ie knitting, handwashing laundry, doing the dishes etc)

- changing the shoes I use according to my current situation with stability and aches (plus I only have shoes that are either ankle-tall, have laces or straps around ankles or are boots and those with laces, too) - plus there's this interesting thing with me feeling a lot more stable with at least about five centimeters of heel. So my collection of shoes (which is a rather big one... yeah, ironically enough I'm a collector of shoes) consists mainly of ones with medium to rather high heels, because that's how I've used to moving around. With heels. A big fan of platforms I am, as well. The taller the shoes the better (although I do get a bit dizzy some days on really tall shoes)

- I do my best to avoid letting any and all of my joints locking, one thing I've been doing all my life

- I do not run, ever. Because I can't, thanks to my ankles going where ever they want to, wobbling and giving up if they so feel fit doing

- I do my best to avoid being in straight contact with anything cold, because ouch and goddamn cold hurts me really bad: I immediately feel like my skin and flesh are about to burst and blow up into sharp tiny pieces and fragments of frozen flesh (wintertime in Finland, oh how I love thee.... OUCH)

- I have wrist and ankle supports, am getting special rings to help prevent my fingers bending into the wrong direction, will probably need to get myself a some sort of belt to help support my torso if I'm feeling extra weak and need to be up and about, have a SOS locket from the Red Cross that encloses a small info sheet about all of my chronic diseases, medications, allergies, phone numbers of people to contact in case of emergency and so on. It's made of silver and rather pleasing to the eye, too. Sturdy, has a great locking mechanism (that can be a bit tricky if fingers lack agility, though) and stays closed and is waterproof. And even the info sheet is made of waterproof paper. To those of you Finns reading this, you can get one here (it is also available in steel, mine's of silver like the one I linked)

I have no idea if there were other things I meant to include in this list (see - lists again <3 ). But that's something, at least.

Now I shall go and take a well-earned nap.

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List number two.

As a follow-up for my last post, I wanted to list things that light up my life and bring me joy. Things that are or aren't health-related. Just things I love about life.

1. CATS

2. birds, watching them go about their daily businesses, listening to their songs changing as the seasons change, gazing at their beauty

3. drawing (given that my hands work), drawing all and anything

4. knitting (socks especially) and crocheting (hats are my definite fave thing to crochet) - this of course depending on how my hands are doing as well

5. laughing at pretty much anything; the darker the humour the better!

6. making lists about all kinds of stuff

7. dancing just by myself, letting go and just moving my body

8. early mornings, watching the world waking up to a new day

9. going to sauna

10. my friends who are few and far between and that's just the way I like it

11. words

12. art, history of it, all about it (favourite artists of mine include Gustav Klimt, Friendensreich Hundertwasser, Kuutti Lavonen, Gustav Doré, Edward Gorey, Yoshitaka Amano etc)

13. the history of clothing and costume design and haute couture especially

14. coffee with vanilla soy milk

15. make-up artistry

16. nature documentaries (Sir David Attenborough is a somewhat of an idol of mine)

17. Stephen Fry (Jeeves and Wooster is one of my all time favourite tv shows)

18. silent movies (Metropolis and The Cabinet of Dr. Caligari especially)

19. fine art, nakedness, the beauty of a female form (queer and proudly so!)

20. poetry

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List number one.

As I am waiting if the aching in my hands would be kind enough to subside so that I could do some fixing my hair today just in order to feel a bit more like a human being, I'll write about things in my daily life that EDS makes difficult or even impossible. Just list things up a little. 

My blog, my ranting. So here goes:

1. no strength in my hands whatsoever when the aches are really bad (got the strength of my grip measured with a special apparatus made for that one day while I was in the hospital and the pain was really really bad: right hand about 0,5 kilograms, left hand less than that. That is not much at all, unfortunately) and the things it makes difficult to do:

-holding my mug of coffee / tea / water without spilling things all over myself

-brushing my teeth

-washing the dishes

-doing laundry (especially the hanging it to dry -part)

-lifting things such as my laptop, plates, etc

-drawing (one day I could not hold a pen in my hand, so bad was the pain)

-holding my cell phone
-knitting and crocheting and thus expressing myself

2. standing up (without having to lean onto something stable)

3. walking because of pain in my back and legs and thus not being able to, for instance:

-going grocery shopping

-running around taking care of other important things
-traveling to spend time with my friends

4. sleeping, because I keep waking up because of intense pain

5. not a chance whatsoever of studying or working

6. taking a shower because of chance of slipping on the wet bathroom floor

7. exercising to try and keep my muscles in good enough shape to, say, be able to stand up or walk

8. not being coherent enough to take care of important "official" things due to being a bit out of it because of being on a heavy pain medication

9. not being able to use a walking aid because of my wrists being weak and hypermobile

10. not being able to enjoy even the smallest of things, for example bird-watching through the window because of being in such an intense pain

Shit, the list could go on and on but at this point it's making me so depressed that I'll stop here.

This is my life, my everyday life with all the difficulties and struggles having Ehlers-Danlos syndrome causes me to have.

Friday morning haze.

Hi.

I felt like writing right now as I am trying my best to stay awake by forcing myself to do something and gulping down a whole lot of coffee.

Yesterday it had been exactly one week since I got home from a long stay at hospital. Went there paralysed from the waist down and came back walking better than in, say, a couple of years. What a learning experience it was, lying helpless in a hospital bed unable to go to the loo. Shitting into a potty, sweating from all the agony and pain and embarrassment, having nurses a decade younger than me wiping my arse.

I'm really glad they kept me well medicated because of mysterious, strong pain in my spine (that started back in January 2011 when I broke my right ankle in three places and was attached to an epidural painkiller pump for a while due to my abnormally strong pain - and as they kept the epidural IV in my spine for some days something happened in my spine and it's been at times unbearable, the pain, ever since then), because being high from the strong meds was actually a good thing for it helped a little with coping with all the humiliating yet perfectly human details of being paralyzed.

Yesterday, what a day it was. I had a meeting with my psychiatrist and therapist and we discussed about how being back home had made me feel heaps better in every way. But as I am sure you can imagine, all this has left me mentally quite beaten to put it nicely and I am lucky enough to get extra help going through everything that's happened during this month of unbelievable things.

I'm on a new kind of medication for both my depression/general confusion/anxiety/whatever and this chronic pain in my bones in my limbs (that I now know to be there because of the Ehlers-Danlos syndrome). The med in question is called Triptyl and since last night my dose is 20 mg / day. It has yet to have any sort of effect on the pain issue, but as it is with most meds, it'll take time to start working. There's just this one problem with this particular drug and it is that at the beginning of the treatment it makes one really fucking tired. At least for me it does that. I'm having trouble keeping my eyes open as I write this. This morn's fourth mug of coffee is coming up. Ugh.

Speaking about medication stuffs, I have a lot to tell about a (neural) painkiller called Lyrica. I don't feel coherent enough to go into all the details about my experiences with said crap of a thing of a pill, but I'll just say this: Lyrica was one of the causing factors on my paraplegia. It caused me symptoms that matched with the symptoms of MS disease. Terrible ataxia and so on. For some people Lyrica is helpful a thing, but for a lot of users it doesn't even work. Fuck you Pfizer and your over-marketing of a drug that is often times not only useless, but a real problem.

More on that later. Onto cheerier subject now.

Yesterday I got to run around the city taking care of things! Going grocery shopping for the first time in over a month was incredible an experience. Holy shit. I felt like a real human being again, with all my kitchy get-up, looking like myself. And what's best is that I walked. A lot. On my own two feet. With the help of my dear husband. It was amazing. Spending a month (or even a week or two) in a hospital, wearing depressing hospital pajamas etc is quite sure to dampen the feeling of being an individual, believe me. And I am a person who loves to wear outrageous things, put on tranny make-up and generally just be... my own weird self of a creature. Therefore being able to be myself again felt incredible and healing and empowering. And those feelings, I find, are greatly important for a sufferer of a chronic physical condition (of any sort). 

I am me, I am not my disease. I have a disease but I have my personality as well. Damnit.

Okay, got to start caking on make-up again, for I have businesses to take care of today, too. Like a mantra, I keep telling myself in the midst of all this ache that I am me. I am me. I am not my disease, I am me.