a bad patient

I make one of the worst patients ever. I may only have a BSc, but I have that BSc as a direct result of an interest in biochemistry. My second and third years were basically me trying to get a degree that would help me with forensics (I could see a potential beyond DNA- mostly it would have been for drug testing and pathology but I had that focus.)

So for me my RA was very easy to understand and accept. I studied it. I did my first immunology lab test on blood from RA patients here in New Zealand. It was more than real to me.

So Fibro has been tough. Bu I have been exhibiting ever more symptoms even if some of them have been with me since I was young.

But what has made that hard is not having that same clear understanding of the biological process.

Too often patients are told “you shouldn’t feel this” instead of “we just don’t know why you feel this.”

One states there is no cause, the other that we just haven’t caught up on the science.

But today I just bluntly searched for fibromyalgia tissue sample because that is the kind of study I can trust. At least for finding changes that we know to look for. Studies on perception or behaviour I don’t trust because the interpretation can be so heavily altered by bias. 

And yes. FM patients have higher levels of cytokines in our tissue than controls. I honestly don’t know why it’s only been in the last decade that I can find these papers because I would think it would be where to start. You can find the links in the chain working back to the brain, rather than start in the brain which is so complex. 

And immediately I thought, okay I get this. I can start to look at changes in therapy to match this.

Clin Rheumatol. 2008 Mar;27(3):407-11.
Characteristic electron microscopic findings in the skin of patients with fibromyalgia–preliminary study.

Small fibre pathology in patients with fibromyalgia syndrome
Nurcan Üçeyler Daniel Zeller Ann-Kathrin Kahn Susanne Kewenig Sarah Kittel-Schneider Annina Schmid Jordi Casanova-Molla Karlheinz Reiners Claudia Sommer
Brain, Volume 136, Issue 6, 1 June 2013, Pages 1857–1867, https://doi.org/10.1093/brain/awt053
Published: 09 March 2013

thanks body

So I apparently had a panic attack yesterday. And let me set one thing straight for people who have never had one- it did not spring from stressful thoughts. They came after the physical. It’s very weird and scary. My hands cramped up (just like my toes do regularly anyway) and my legs.)

Anyway. It all started by a whole bunch of really bad timing. I had my usual breakfast. Which is not a breakfast designed for lots of energy. 

Firstly my bus to my destination sat idling for at least 20 minutes. I think it was there early and because it was at the front of the stop we all got on board while the earlier one was later and so we all missed it.

I got to my destination late so was already pushing my limits for the day, the trip is usually only about 30mins but with the added wait it was obviously much longer.

I was going to get a cup of coffee or tea then but thought that I could grab a cup at the hospital as it was next to the blood collection place which was what I needed to do. It was going to be what, ten minutes.

I decided to walk the short distance to get my blood tested after only to find a sign saying they had moved. To a street right next to the place I was just at. It was a short distance down the side street and then down a driveway. 

By that time I was very sore. and by the time I got to the centre I was not really fit for walking- but had no option as I was already out walking. 

Basically if this was The Good Place my test would be this scenario. 

Then there was a good 20 minute wait there as there was one nurse on- people after me left- I was not really able to do that.

So then I had to walk up the street and was going to have a cup of tea, as it was now after 1pm so coffee was a no no. 

But my bus back was pulling into the stop so I decided to put off having food/drink until the bus got me back to the station. So that was another 30min delay in rehydration.

And then lo, at the station my bus home was about due so I put it off again as my buses are too infrequent to just go to the next one. 

But by that stage I was hunched and my ribs hurt and I was not breathing properly. So that’s when My entire body started cramping and tingling. And then at my gp I was just about ready to fall over.

So this is very much what happened almost exactly 6 years ago at DragonCon. It was just a lot more obvious as to the physical cause.

Anyway. I basically got home and went straight to bed.

And I hurt still today. Will be doing more in the way of research again.

a recommendation- health

So for regular readers or those who simply land on my site or page can tell, I don’t do paywalls, nor sponsorship. I want to be free to promote things that have really made an impact 🙂 I don’t like putting bad feedback out there as it is so permanent and may still be around even when a manufacturer/seller does make changes.

Anyway. This post is brought to you because I am upright after figuring out how to arrange my pillows so I could breathe last night and that I am remaining upright thanks to a nasal spray that actually works- it’s a bit stingy as it has tea tree in it but well.. This is the first time I have painlessly reduced congestion from a cold ever.

So it’s Fess.

I may have used it it little differently because I found the spray actually did the thing it’s supposed to and with nasal passages so full that you can’t breath that’s impressive.

So I sprayed, cleared into a tissue, and repeated because I was so congested.

Anyway, my nose was not happy the first time I used this as the tea tree oil is very astringent. but it does have moisturising agents so it didn’t last for long. It also did sting my tonsils- yes it really does clear congestion that much! But wow.

Okay so it’s so good I need to be careful to not over use it 😉

Oh and it leaves a pleasant taste. And everything also smells slightly minty. And that is indeed a wonder while leaking germs!

 

For those curious about the pillows- I have a habit of rolling on to my back at night- usually not good but actually the only way to breathe while the virus is super active. So I used a feather pillow to make supports for my head and my normal pillow for my upper back and shoulders to keep my head raised. A tiny bit cheaper than those electric head options though man.. they seem like the perfect future bed option.

 

So I am going to attempt to have a day of gentle sewing catch up 🙂

Workshops- A Modular Frock – The Gilded Age

Yep, doing another series of workshops this time with a “single” focus of getting participants a full set of patterns that work together to make a frock from 1870-1900.

Where: Waitakere Central Library, Auckland, New Zealand

When: Saturday afternoons

Dates- TBC, after the Steampunk Festival but over June and July.

The basic frock will be plain, but over the course of the series of workshops there will be moments to stop and be able to think about materials, patterns, layers. And there will be a whole workshop dedicated to draperies and trimming. Yep. Hands on waterfall!

Oh yes. I am keen to make this work for everyone from living history folks, to Steampunk, to cosplay (have I mentioned my Elsa is based on this modular system? Well she was. And that is why my skirt looks the way it does- it is actually a victorian skirt.

So the dates are yet to be confirmed but it will work around the Oamaru Steampunk festival and SCA midwinter. So I am putting out feelers for whether people want a weekly or fortnightly.

Also while these are frocks, and they are challenge there is no upper or lower age, nor experience needed, nor gender bias. The point of the workshops is to get a toolkit to be creative. If you have no experience with sewing you will pick up some handy hints as what I will be focusing on is the engineering. There will be new terms as well.

And I really am keen on getting at least two more cutting tools made up, so there will be a chance to play with them too 🙂

the steroid shot has worked

While I wouldn’t say it’s a cure it has helped decrease local swelling to the point I can genuinely test what is going on.

http://www.fprmed.com/Pages/Trauma/Costochondral_Seperation.html

Go down two more ribs and that’s where mine is. I finally was able to do a very gentle test of the hook manoevre and I did at least find the natural edge of the cartilage curve 🙂 And it moves with breathing.

I can even sit upright for a while now :0 Breathing is weird as the muscles that attach to that rib feel stretched and so also feel like they are cramping. So I don’t want to move it all too much.

 

Also that amount of inflammation set of a mini relapse of my RA, and also ummm… inflammation in the abdomen. But I think that has settled as well.

 

Still a long road to recovery. And there is a lot of mixed information out there about treatment.

sigh

I have one of the only, if not the only plugin capable of reblogging instagram posts. But It doesn’t actually automatically do so and I have to set it to pending/draft then edit to “published” because otherwise it just shows the code- my guess is the post publishes faster than WP can add the media and process the information

But at least I know this.

I’m just tired. So deeply tired that I can’t do anything except maybe every two days and so when I have to spend one of those days doing housekeeping type stuff that is a half week gone.

 

The worst part is it’s not really fixable from my end. I have tried electrolytes, I have tried more protein more veges ( Vit C, plus iron, plus Folic acid plus B12 all hopefully working together.)

 

But nothing is helping- this might be the new schedule for my body. The optimisim I felt earlier this year is fading fast. It really is.

So tired again

I try to not be around people (online or off) when I am this tired, and now I have a lovely reminder why- I simply can’t communicate properly. And on the other hand when I am this tired my eyes tend to go dead and I look furious. Actually I look in pain but it is usually read as furious (in the same way a grimace can be mistaken for a smile.)

So it’s just not good or helpful.

But I’m starting to see a pattern to how this tends to lead up to weekends being tiring right now and that’s everything to do with how exhausting travelling alone is. JUst across the city, but with the products I want to buy it winds up using a lot of energy.

So come the weekend I am too tired.

So given there are some events coming up I need to be careful for I will be avoiding all solo travel for a while 🙂

final round of tidying

(it is a happy post, honest!) Managed to go through all my paperwork. Found all the shows I had been in. All the travel documents. What the heck-most was from before I was 25.
I was working full time, doing theatre, training at the gym (a spot of stunt training too), doing charity, and travelling.

I know it is not related. It was a mix of dumb luck (a viral infection and an injury at the same time confused my immune system) but there is also a bit of genetic predisposition.

I get sad when I think of opportunities I could have created or am no longer able to commit to. But holy wow that was a lot of reminiscing and remembering how brave I was. Still am. It’s just the real limits have shifted. So it doesn’t look or feel like it.

But that is not the same as bitter, or resentful. It is here, it is now.

And I am grateful for every single opportunity I did have- taken or not.

fatigue

I struggle to explain how I can tell I have fatigue versus being tired.

It does physically feel like pressure. But I think that veers a bit close to what is said is experienced in high anxiety.

It’s not the same.

This is more like standing chest high in water and trying to breathe. It’s not pressure on the chest, but the feeling of being pushed in all directions, and no matter how deeply you breathe it feels like air is being pushed out. And sometimes that does actually happen.

Much like in water limbs feel strangely supported and heavy at the same time.

 

All my post history is back!

The year of most progress, 2014 is now back! So tags and categories actually work and I am now able to actually search the blog and find posts to share information/

Such a relief! There are though a bunch of drafts I thought were from this time, but they seem to just be posts I never posted Some should be, some may get put into the pending file 🙂

but it’s back and complete!

http://www.arrayedindreams.com/?s=maleficent 12 pages!!! 110-120 posts 🙂

 

http://www.arrayedindreams.com/?s=elsa 13 pages, 120-130 posts!!