Mitochondria and Beads

Have I just gone insane? Very possibly. Why on earth would I be attempting to write a single blog about Mitochondria and beads? In fact, probably your initial question is: what are Mitochondria? I can tell you up front that they’re not a new type of bead…although I am considering the idea of developing a new bead design of my own and calling it the Mito. This idea will make sense by the end of this blog post!

No, this is actually just an update from me, plain and simple. I know a lot of you have been following my ME/CFS story over the past few months. The illness has been impacting severely on my beading and explains why I haven’t been teaching or appearing on Jewellery Maker or rolling out new patterns at my usual rate. So I want to start with an update on my health. Far from being tedious, or overly personal, the discoveries I’ve made over the past few weeks have been pretty mind-blowing, which is why I want to share them. Then, I promise I will be talking beads again, so have patience if you’re eager to see how the beads fit in…that bit comes at the end!

A little story

Once upon a time there was a lady who earned £100 every week. Every week she spent £150. The wise amongst you will have immediately realised that this is a very bad idea. Anyway, luckily for the lady, she had some money saved up, so for a few weeks she was able to sustain this overspending by taking £50 from her savings. However, eventually her savings ran out, but she didn’t stop spending the £150 and she didn’t start earning more than £100. The inevitable result was a growing debt. Eventually the bank manager got fed up with this and blocked all her credit cards, debit cards and anything else that allowed her to spend any money at all.

So, for the next few weeks that £100 kept coming in every week, but she spent nothing. Gradually her debt began to reduce. Seeing this effect, the bank manager agreed to a compromise. He allowed the lady to start spending just a small amount of money each week, just £20 at first. The remaining £80 went into continuing to reduce the debt. The poor lady was grateful to be able to spend this small amount, but she would dearly have liked to increase that spend. However, she couldn’t see a way to earn more than £100, so she was rather stuck. The end.

Why on earth have I shared that totally random tale with you? No, it’s not an insight into my business finances (thank goodness). I actually just want you to hold onto that idea while I move on to talk about Mitochondria. Curiouser and curiouser, you may be thinking, but it will all hopefully make sense in the end!

Mitochondria

I’m going to start this next section with a massive caveat. I’m not a scientist and I have no medical training. However, I have found myself learning more science than I ever imagined possible recently. What I’m trying to do here is to distil what I have learned into an easy story, although the actual subject matter is incredibly complex – and also absolutely fascinating. So, if you would like a slightly more (still very accessible) explanation of the Mitochondria and their significance in CFS/ME, then take a look at this article. If you’re happy reading scientific terms, then this is actually a really interesting article about Mitochondria.

Right, now I’ve covered myself, on to my story. Every single cell in our bodies contains a little engine called a Mitochondrion. Mitochondria are hugely complex, but for my purposes the thing to understand is that they provide the cell with the energy it needs to carry out its function. Of course every cell (heart cells, lung cells, muscle cells, liver cells etc) has a different job, but its energy source is identical.

The way in which Mitochondria provide energy is really clever. They take one hormone (ATP), it undergoes a chemical reaction which turns it into another hormone (ADP) and that reaction fires off electrons which are the energy current of the cell. The resulting ADP should then be recycled back into ATP so the whole process can begin again. This entire process should take a matter of seconds and it should be going on all the time. I should also mention that the recycling part requires some energy, but the amount of energy it requires is far less than the amount of energy that it produces in the reaction stage, so this is a fantastically efficient system.

Like any good system, lots of things can go wrong with it and when it malfunctions, the results are pretty catastrophic. Apart from anything else, the cell has lost its energy source, or is trying to work with a reduced level of energy, so that cell will struggle to do its job effectively.

Similarly, as with any good natural system, when errors do occur, the body has a plan B and plan C etc to try and deal with the problem. If the ‘recycling’ function goes wrong, ADP doesn’t last in the body forever, but turns into a third hormone, AMP which is then excreted. This leaves the body trying to manufacture new ATP from scratch. This process requires raw materials and much more energy.

I have made this all sound incredibly simple. In reality, some scientists have devoted their entire lives to the study of Mitochondria. There is still a lot we don’t understand and I feel I need to apologise to any scientists who are reading this and tearing out their hair because I’ve missed out some nuance which is critical. I also need to tell all you non-scientists not to take this as gospel. I have tried not to mislead, but if you feel this information is critical to you in some way, then please go and find an expert to help you!

My Mind-Blowing Discovery

A couple of weeks ago, I announced on Facebook that I was holding a set of blood test results that pinpointed a cause for my ME/CFS. This is a bold claim to be making. It is one that a lot of medical professionals will doubtless dismiss as nonsense. It is also a claim that I feel I’m not in a position to be touting just yet. In actual health terms I remain that lady who is earning just £100, who would like to be spending £150, but whose bank manager is only allowing to spend £20 per week. That money is my energy: the ‘earnings’ represent my body’s energy production, the ‘spending’ represents what I would like to be doing and what I am capable of doing. The bank manager is my body who is putting a stop to my recklessness in a bid to try and make space for it to repair itself. So, I feel that until I have gained more energy, I cannot say for sure that what I am about to share with you is the answer. Even if I reach the point where I feel I can make that assertion, I am still only going to be able to say it was the answer for me – it may work for others or it may not. All I can say is that it makes complete logical sense to me, so I am hopeful.

Why am I telling you this? Firstly, I don’t want to be quoted as saying I’ve found out what ME/CFS is and how to cure it. I simply don’t know about that. Secondly, most people who are diagnosed with CFS/ME are basically dismissed. In some cases they are dismissed as malingerers. In other cases, the illness may be acknowledged, but without a readily available solution, doctors simply don’t know how to help and don’t have the resources to offer anything useful. Everyone’s experience of this is different and I do not wish to tar all doctors with the same brush: some go out of their way to help, even if that help is just ‘moral support’, but sadly, some do not. This situation leads to the impression that nothing is known about the illness and nothing can be done to help. Actually this is not true. Now, as I write this, I don’t know whether my discovery is going to lead to nothing, lead to some improvement (and to be honest I’ll take that), or lead to a full recovery. The specialist seems to be cautiously optimistic about the latter and I want to believe that, so I’m going to do everything I can to help achieve that outcome. ‘Everything’ means following the medical regime and also resting to allow my body to heal.

So, I find I’ve skipped to the end and missed out the critical middle part of my story: that blood test. The test was to look at how my Mitochondria are functioning. It revealed two interesting facts (again, I’m simplifying these here). Firstly, my level of ATP is low, so without the hormone for making energy, of course I’m going to be struggling to produce enough for my body’s needs. Secondly, the recycling system is blocked. In fact I have a 26% blockage which is apparently quite high. Even without the blood test, logic suggested that the ATP level would be low, so for the past few weeks I’ve been taking a series of supplements that are basically the raw materials to help my body manufacture ATP. This has helped slightly, but not enough. So, the blockage is the key factor – even with the best raw materials, as long as the blockage remains in place, my body cannot function as it should. So, I’ve just had a second blood test to try and identify the cause of the blockage. There are many potential causes, ranging from virus/bacteria to fungus to Lyme’s Disease to chemicals. Happily for me, my blockage is chemical – one of those chemicals has been identified precisely as something that is used in detergents. One cannot be identified precisely, but is likely related to antibiotics and the third blockage isn’t in fact a chemical, but a kind of mutation of something that my body produces naturally. Apparently this latter blockage is very rare, so it sounds like I may have caused some excitement in the lab!

What happens next? Make sure I’m not still putting those chemicals into my body, so I need to check and change my detergents and take some care in future with antibiotics. I cannot categorically say whether these are the only chemicals that will cause me problems or whether the fact that these chemicals are the issue is no more than a coincidence. In all likelihood, they became an issue because of the lifestyle that I was leading (poor diet, no sleep, stressful job) which had put my body in a position where it wasn’t maintaining itself very well. If I replicate that lifestyle in future, I know I will be at risk and I don’t know whether it will be the same chemicals that cause a problem or whether my body just has a natural weakness in the detox function and therefore I need to be careful with all chemicals. For now, aside from eradicating these chemicals from my life, I need to help the healing process. This means more supplements (raw materials) that my body will hopefully use to de-tox (no, I’m not talking the faddy diet detoxes that we hear so much about – these are vitamins and minerals that have been found to be deficient in my mitochondria, but which should be used to aid a naturally occurring process by which the mitos detect and expel toxins that get into them). Simultaneously I continue with the supplements to aid ATP manufacture. The detox process in itself requires energy, so as you can imagine, this is a chicken and egg situation. I feel like I’m doing stuff that’s on the edge of scientific knowledge at the moment. It’s unproven and I know there are many who will dismiss this. If it doesn’t help, it may mean that the whole theory is rubbish, or it may mean that the theory is sound, but we’re still lacking some crucial piece of information. It’s something to work with.

Back to Beads

I promised I would get on to beads eventually. Well, a few weeks ago I had a lovely visit from my beading friend Jean Power. It’s always lovely to catch up with Jean and talk beads. But we were also talking about the struggle of running a beading business and living with a chronic illness. It leads to a lot of mental conflict. On the one hand we need to keep the business going, which means needing to bring out new designs, to teach classes, to put together kits and to publicise all this stuff on social media or blogs. On the other hand, illness gets in the way of all this activity. How far do you push through and sacrifice your health and how far do you take a step back and sacrifice the business and hence your income? Do you acknowledge your illness and ask for understanding, thus taking the risk that you will lose out on opportunities because people will think you’re ‘not up to it’ or ‘potentially unreliable’. Or do you keep the illness a secret and just hope that it doesn’t interfere with your business and income? Not easy decisions to make.

Both of us have acknowledged and try to work with the illness, but it’s not easy.So it was great to talk to someone else who understands those tricky choices and also the gulf between how we are really feeling and how we appear based on the amount of stuff we’re publishing online. So, we were comparing notes on the little cheats we use. I don’t think it would be too wrong of me to share some of those cheats with you! For me, I know I have about two useful hours a day if I am to function and heal simultaneously. So, it’s about efficiency and prioritising. What am I going to do to make those two hours count? Well, scheduling is brilliant. I can take a two hour slot and schedule a couple of blog posts. Or a one hour slot (maybe less) and schedule a load of Facebook posts. Then I sit back and rest. There’s also the even bigger ‘cheat’ of lying in bed and dictating a blog post while someone else writes it for you! You may be getting the impression that I’m churning out blogs and articles and new designs, when in reality I’m lying in bed feeling terrible. Then there are the projects that I made ages ago, but for one reason or another failed to write up or failed to publish…they’re coming in pretty handy right now! Of course all this will run out, so I’m trying to be sensible and just accept that everything has to take a step back. It’s better to publish one pattern a month than four patterns in month one and then have nothing left. So, in the absence of ‘relevant’ images, I’ve been peppering this blog post with photos of products that I’ve published recently, or that I wanted to remind you about because they seem suitable to the season!

There is one more thing that occurs to me: if I’ve written all this as though it’s some kind of hardship, that’s actually not how I feel about it. So, my thought for the day. We all live life too fast. We all spend so much time trying to work out how much we can pack into every day, hour, minute, that we don’t really stop and appreciate any of it. Whether that’s because we don’t have time to stop, or we’re too tired to appreciate. The point is, surely our journey through life should be about growing and learning, not ticking boxes. For me, this illness has forced me to stop. I may be standing on the brink of a ‘cure’ (I actually can’t comprehend that right now), but whatever happens, I won’t be going back to the life I exited 14 years ago. This illness has taught me a lot of lessons, many of which I haven’t liked if I’m honest, but some of them are a privilege to have learned at a young age. I was recently reading an interview that got on to talking about people’s biggest regrets when they die. Number one was ‘working too hard’, so not taking the time to develop and enjoy relationships, fun and all those things in life that don’t earn money. If I’ve been given the opportunity to learn that before I get to old age, then I count myself as lucky.