Category Archives: life with disability/illness

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.

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 ūüôā 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.

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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.

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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 ūüôā

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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.

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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.


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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.

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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:¬†

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


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.

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Having constant fatigue is like driving without a fuel gauge.

You can often make calculations to make sure you don’t get into trouble. But in order to do that you need to make calculations constantly- fuel in fuel out is not always a simple measure of how far you go but also about conditions and even waiting/resting uses fuel.

You can make all the best choices but you have to remember everything you do and don’t do.¬†You have to continually check maintenance of everything else to make sure your understanding of fuel use is accurate.

You keep yourself checking for warning signs of getting too low, and sometimes you manage to catch that and sometimes you don’t. If you are lucky you can get to where you need. But you also really dislike calling in emergency services because you know you’ll be told you should have known.

And your disease uses up fuel just by being active. The exact amount varies but it’s also not really been quantified. And it’s not just energy that’s used up, bone is dismantled and absorbed faster than it is laid down.

So yeah. Currently I’m in the I think I have the balance right.

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lessons from masterchef australia

I really hope the executives who are in charge of Masterchef Australia continue to let it be the incredibly positive bright spot it is. I have watched since the beginning and am so very happy to find people in recent years have come to love it as much as I do.


So, I recently had to start eating fish and chicken (and allowing other meat products when appropriate) after being vegetarian for decades.

It was a huge decision but one made for health. But it was still not an easy decision- regardless of what my logical brain was telling me. That is still decades of a belief in how I should live (not how I think everyone should live) to deal with.


Last year I was alone for a couple of weeks, and something happened to turn the stress levels right up. In context, and with family support, it probably would have been something for me to use tea sipping icons over¬†while formulating a response¬†But it really came out of nowhere. And because I was not able to understand why or how it was relevant to what was going on, it really got to me. For me to make even a hint of a similar comment would have come from a very dark place, and it’s not really a place I want to visit, for anyone.

Nothing quite like both trying to justify why such a brutal comment would be made at all let alone meant and believed, and trying to at the same time try to fight the impulse to believe it. I’m not extremely patient, and sure have had frustrations spill over, but even so I could never think of saying such a thing. I spent a decade constantly ramping up the positivity and making people feel special not because that’s what I should do but because I believe it deep in my core that we celebrate each others achievements. We all win when we recognise the work of others- because it means we all have an understanding of what makes our work excellent. And to keep striving for it.

So with no support and my health declining anyway, food not only stopped being interesting it was painful to eat and made me feel ill.


So forward to being able to catch up with some Masterchef Australia.




Respect, positivity, and camaraderie. And good food. Food that literally inspired me back into caring for myself and wanting to share what I created, again. And so was able to start sharing the joy in celebrating others.


But more than that, its popular. People want to watch this show, this relentlessly focused and positive show. People want to see the challenges put to the participants but more than that they want everyone to win, to do well.


I really hope this continues, I really do. We all need good examples of what it means to compete and to be a good competitor and what it means to respectfully solicit the best from others.



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cleves progress

Today the carpal tunnel injections have proven their worth ūüôā If I can do this one or two more times before I have to have surgery I’ll be happy. Sounds like I need my ulna’s chopped off sooner, but, maybe?

Also I may have gone through 1/4 of my Hot Cinnamon Sunset tea. Now if I could get a perma-stash of that I’d be happy ūüėČ

Okay so putting fabric away up high just made my radial stuff really make a statement but I am just wandering around with bandages around my wrists not full splints ūüôā

But I have cut my Cleves skirt fully, an entirely new kirtle bodice (hey Michaela it’s summer, you do not want linen canvas, cotton twill, and silk underneath those layers for the bodice) from my linen twill.

Just took a break to share this. I usually work with non easy to photograph fabric so this is why I’m sharing now! I usually use a mechanical pencil and draw directly under the pins that emerge from the top but I just had chalk out there today.

Also yes, florist pins. They grip better and I can really pull in my seams to fit properly. It’s easy to see how, I also overlap them to work like boning/support.

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