Alison/TINK: Hi there bloggers. Firstly, may we thank you for visiting our blog for our very first official discussion post. We are so excited to share our personal experiences with you, and hope that you will share yours with us too.
For our first blog, Jodi suggested the topic of 'Adrenaline Surges'. Of all the papers that she has published on the wonderful HFME, the one on Adrenaline Surges has had the most positive feedback. So I thought her idea of this being the first blog discussion a great idea. Everyone knows that overexertion makes M.E. terribly worse and can even kill, but few understand the role that adrenaline surges play in making overexertion so difficult to avoid in M.E.
Jodi/HBIRD: Hello everyone and thank you Tink for coming up with the idea to do this blog together and doing all the work in putting it together! I'm very excited about it and hope readers find it helpful and interesting.
And yes, as you just said Tink, adrenaline surges are one of the best and worst things about M.E.
They provide a way for our bodies to cope with overexertion in the short term and they can allow us to attend events that are very important to us (such as funerals, weddings and medical appointments) which we would normally be too ill for. Unfortunately, they also let our bodies 'write cheques they can't cash' and are the reason why so many of us are severely affected. The payback for each adrenaline surge is just so enormous and so prolonged. It can be tempting to rely on them for a while especially when you are first ill, until the whole house of cards inevitably falls down and you are far more ill than when you started, possibly for months or years afterward.
Alison/TINK: Absolutely. People often think that if you are feeling well enough to do something, whether due to an adrenaline surge or a moment of rare capability, that you are indeed well enough. However, this is not always the case.
Adrenaline surges sometimes remind me of anesthetics. Just because you can't feel the damage of what you are doing, that doesn't mean you are doing no damage. After the surge wears off, like an anesthetic, you will feel the repercussions of what you did.
You know, one of the things that worries me so much about many M.E. sufferers, is that so many are uninformed. Most of this is that they are simply too ill to study accurate information on their illness, and by that I mean not the immense amount of complete nonsense that is on the web. But adrenaline surges are one of the least known symptoms.
I know for me, HFME is where I learnt about them. And it totally made sense to me.
Personally, the way I know I am having one, is that I tremble and feel 'antsy'. For me also nerves can bring on an adrenaline surge. I don't get nervous often, but when I do it's usually for no reason at all and certainly brings an adrenaline surge on. And trying to do little fiddly tasks quickly. But if a sufferer does not understand them, it can be so dangerous.
Are there things that bring yours on Jodi? Are there things you do once you feel one coming on to try to limit it?
Jodi/HBIRD: Too much computer time is the main thing I have to be most careful with avoiding adrenaline surges, it is so easy to get wrapped up in what you are doing and lose track of time! Visits with friends and family are also an issue, it is hard to remove myself from a social situation after a short period of time, especially with an adorable new baby in the family now.
I know I'm in an adrenaline surge when I start talking really fast and talking way too much and too loud. I also tend to sit up much more than I would usually as I'm so filled with adrenaline that lying still can be quite difficult. I sometimes tremble a bit as well. All I can do to limit it is try really hard to not sit up, and to withdraw myself from the situation as quickly as I can, which is hard to do at the best of times but even more so when you are all adrenalined up and feeling very bubbly and over-enthusiastic!
Alison/TINK; Absolutely. I feel it is so important for people with M.E. who can have a strict schedule, to do so. I understand those whose rhythm's are too unpredictable can't, but for those of us who can, it goes a long way to minimizing symptoms getting worse, either in the short or long term. As you have said, this can be terribly difficult, especially if you are feeling able to do things, like one can when having an adrenaline surge. But I find setting alarms a big help. I use my phone so I can choose the sound that is least imposing on my head. I also do the same with visitors. I was brought up with propriety to the extent I find I am unable to simply ask people to leave. So I have codes I suppose. I say things like 'Is there anything else that I can do for you today?' or 'Thank you for visiting today, I really appreciated it.'
I get laughed at or such for having such a strict schedule/regime/timetable. Which is very tempting to take personally. However this simply is not about me, it is about my overall health. If I want to be able to cope with my life, I need to be strict with things. If I want to speak to these people, which I do, I have to put their simply not understanding to one side. It can help to show them your wonderful papers on your HFME site, or write the people letters of your own trying to explain. This is much preferable, at least for me, than trying to mumble it on the phone. How do you remove yourself from social situations as you say, when having an adrenaline surge or other overwhelming symptoms?
Jodi/HBIRD: These days my visitors only ever visit for quite set times, so I know when they will arrive and also when they will leave, especially with one friend who catches the same time train after seeing me each time. If I suddenly feel unwell during a visit I will I will tell my visitor that I will unfortunately have to cut our visit short. It has taken me over a decade to get to this point though!
Your way of dealing with this issue in such an organised way is great Tink! Pre-planning is so important as making the right decision in the moment (while we may still feel 'anesthetized') can be almost impossible.
It is such a shame that M.E. patients' non-negotiable physical need to very carefully restrict and manage light, noise and human interactions and so on are often unfairly mistaken for a personality flaw and as being petty or 'controlling.' (But that is another whole issue, perhaps an issue for a future Tinkerbelle and Hummingbird blog discussion?)
It isn't pettiness, it is survival. Having such strict limits is something we do out of necessity, not because it satisfies an unhealthy psychological need!
Adrenaline surges are a lot to have to try to manage when you are quite ill, although I'm very lucky in that mine have finally calmed down a lot as my health has improved a little lately. I wrote most of the HFME site fuelled partly by low-level adrenaline surges but now I do it under my own steam, with only the very occasional accidental exception. This leaves me feeling much better after writing, and with better health, but unable to do some of the more complex tasks that adrenaline allowed me to manage in the past -which is a bit annoying I must admit!
It is a smaller battle now, but still a real battle at times. Adrenaline surges are also so often misunderstood by others. It can be utterly maddening! For example, when I warn a friend that I am having a bad day and may not be up to much while we have our visit, the adrenaline surge phenomena of M.E. sometimes creates an illusion of good health. I get more and more ill as the evening wears on, and when it gets bad enough that my body is in real physiological difficulty, my body floods with adrenaline and I appear to suddenly become quite well. I talk a lot and very quickly. It is frustrating but of course quite understandable that so few people can see the difference between genuine health and vitality, and an adrenaline surge brought on by a health crisis, the latter of which is anything but a sign of good health in the M.E. patient. I don’t expect others to always recognize this sign of a pending relapse, but to have it misinterpreted as a sign of improvement can be hard to take!
You can read more about adrenaline surges on the HFME site.
As you just mentioned before Tink, so many M.E. patients haven't read much if anything on adrenaline surges which is so unfortunate as understanding how to recognize and minimize them is an essential part of stopping M.E. from becoming more severe over time. Good information is so vital... and so rare when it comes to M.E.! Patients need to know that calling up a big adrenaline surge to be able to do certain things only ever ends up with lots of extra pain and you being able to do far LESS in the long term. What patients really need here too is doctors that will do house calls or phone consults so that patients are not forced to deteriorate significantly just through trying to get some basic medical care. This is needed so urgently.
Okay that is it from me for our first blog discussion post Tink! Phew!
Alison/TINK: Phew indeed. And I know we could both say much more on this subject, but we very much understand how difficult reading can be for some people with M.E., so we'll leave it at that, and hope we have shared enough for now.
We really look forward to hearing how adrenaline surges affect you, and how you cope (or don't) with them, and how people's opinions on them make you feel.
I have set up our blog so that you can all comment on the stream below. However if any of you have any problems, feel free to email me ( contactalisonlouisebell@gmail.com ) and I can post your comment for you, either with a credit or anonymously.
So that is it for our first official discussion, we bid you all a calm day and hope that you will return for future posts. (Remember, you can request/ suggest future discussion topics on the set tab)
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The Tinkerbelle and Hummingbird M.E.
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