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!!

Why I never ask myself “why me” about my disease.

There is a black hole in the middle of our galaxy, probably in the middle of every galaxy.

Our sun which we need to live also kills us.*

Every living thing either depends on the lives of others or has others depend on them.

There is an electromagnetic dawn chorus most of us never hear.

Some cephalapods can control their skin cells, raising the surface to be smooth or mimic rocks or even ruffled sea weeds. Some create light, and can flash on and off.

Viruses are just short strands of RNA or DNA (fancy!) with a protein sheath. But they can take control of organisms from bacteria to humans.

 

These happen, they are not directed by morality, they happen. There are actions and reactions and we are learning to understand them.

 

And much as I’d love to be able to camouflage myself like an octopus or flash lights like a cuttlefish, I don’t really want to trade places.

 

Knowing the odds doesn’t make me think how unfair, or that it will protect me from anything else horrible.

I do consider myself incredibly lucky. Not only did I get to understand my body on a chemical and microbiological level, but also our origins, and the origins of the universe at university. How could I possibly have the ego to think this was a deliberate or uncaring act?

I also consider myself lucky I did also do that intensive two year course in performing. Extreme wake up call on how unfair people are. People judge, people are cruel, or uncaring. People do favour some people over others, and some refuse to see life outside their own experiences.

It really made me more determined to achieve because I knew the universe really wouldn’t notice. But I also knew that there would be people who would get in the way, and I would get in theirs.That’s enough to try and understand on a level of personal responsibility.

 

We can also be bound by geopolitical boundaries. Access to care is limited to decisions made by people you have never met, by companies who need to make a profit, and by individuals who want to reap what they believe they deserve. The boundary to access my closest hospital is barely two houses and a park away. A park that is uninhabited. That would also have seen me recieve treatments earlier and to have ongoing care. (But that is not to say the care and respect I get is less.)

 

I do though tend to care about others and tend to adopt language that comforts them. I don’t look at others with a cold eye and think, who cares, I know who cares- we do. It is we who determine fairness and parity in our acts.

 

*We need Vit D but the sun also destroys DNA- that causes cancer. UV is also used to sterilise. There is a reason it is so effective? SO it’s a balancing act- and I live under the ozone hole. I have traveled. I have felt the difference in UV levels:

In New Zealand, peak UV levels are about 40 percent higher than in similar latitudes in North America

The Earth is closer to the sun in December and January, […] Low air pollution levels lead to higher UV levels […] In summer, ozone-depleted air moves over New Zealand from Antarctica.

I am fully European, first and second generation here, so my biology is not primed for the environment here. But that low pollution, it sure is lovely.

okay, interesting reading on bone loss

I was trying to find some real research on costs and benefits of non-medicine therapy (diet and exercise) and it’s pretty much all reliant on assumptions. Also no real follow up. Long term is not two years. Not when you are living with a genuinely long term disease.

For example, the bone loss thing. It’s a mix of factors (very good easy read but very long), but primarily the disease itself suppresses bone reformation- probably to prevent the joints becoming a big lump of bone.

Pretty much every negative effect of the disease is actually the body trying to stop the disease.

~`Low iron count? Iron is used in inflammation so this is a fast way to slow it down

~High ESR- again, clump those red blood cells together so the iron is hidden from being used for inflammation.

~Osteopaenia? endogenous glucocorticoids are released in inflammation, as anti-inflammatories. They do the same damage to bone as the pills we take. (I also suspect it is to prevent joint fusion/deformities. I’d like to see if that bears out but I’ve been impressed with how my accessory bones seem to have been resorbed first.

 

We also have poor nutrition. Now this is not to say we make poor food choices! here’s the thing: http://joe.endocrinology-journals.org/content/201/3/309.long

Chronic inflammation is frequently complicated by poor nutrition. This is partly due to inflammation directly inducing a highly catabolic state.

And:

It is predominantly manifested by a reduction in lean body mass.

The disease changes our metabolism and reduces lean body mass itself. There is so much focus on how we are less active, but yes, if I look back to my early years I noticed extreme body changes that did not correlate to previous exeriences.

Calcium and vitamin D are important in maintaining adequate mineralization of bone. Deficiency is associated with attempts by the body to overcome the problem by increasing PTH secretion.

Which leads to:

This increased RANKL expression increases bone resorption through an increase in osteoclastogenesis.

Basically there is a vicious cycle of bone resorption to try and make up for lack of calcium and Vit D. And these are first affected by poor absorption- usually due to gut inflammation.

Inflammation related bone loss is an important clinical problem and several approaches have been used in its prevention and treatment. One approach is to try to reverse the underlying mechanisms that cause the bone loss. Exercise and improved nutrition would seem to be logical treatments where reduced mobility and poor nutrition are implicated. Where exposure to therapeutic glucocorticoids is implicated, it would seem logical to try to reduce the dose given or use alternative anti-inflammatory agents. Unfortunately, these manoeuvres are usually not possible due to the nature of the underlying disease.

I love honesty like this. It means I can focus on treatments that work and not waste resources on treatments that don’t.

 

So basically if I could find a trainer to work with me every day and not only create a training schedule that works but is also adaptive and we can alter it at will that would be great.

The problem is I have no access to a trainer every day.

I have looked into local gyms and looked for specialised trainers. There are none.

At the moment the best recommendation is to just try and stop if you hurt yourself.

Well that’s going back to the driving without a fuel gauge thing. I think I’ll keep sticking to my low inflammation diet (which changes depending on how I respond to it- and it is personal it’s all about what causes me inflammation and that tends to be sticky starches and fats) and low inflammation exercise.

Luckily I live on a nice fairly flat area and I have walking routes that are very short, short, medium, and long. And generally I can tell at each turn if I can go the next distance.

I also try to avoid boosting iron but I do boost protein, B12, and folic acid to help build red blood cells. It’s helped a lot. Like a crazy amount. My anaemia is much lower. This is through diet not supplements.

Very lucky I can do this as I do not do well on red meat or completely vegetarian. Yet others do better being vegan or fully red meat. It really is individual and it really does make for difficult choices if there are reasons beyond physical health that impact your life.

I do prefer changes in what I do over medical intervention but there are aspects to this disease that we have little control over.

Accepting that is a step to finding our best chances. I will continue to try to balance what I can with the tools I can use.