Still on that boat…

Strawberry blonde in a dizzy world!

What on earth is Adrenal Fatigue?

July3

Well, Adrenal fatigue is part of the reason why I spend most of my time feeling like I’m wading through treacle!

 

(Glastonbury 2007 wading through mud to see Amy Winehouse was much easier and more fun!)

A good example of adrenal fatigue is me trying to write this blog post. I open my laptop feeling ok, write a few words and then all of a sudden, I feel heavy and can’t think straight. I have no other option but to go back to bed to sleep or watch back to back episodes of Dynasty on Netflix – don’t judge me! It’s a whole new level of exhaustion so making sense of a film plot is never going to happen. Besides, who doesn’t love big hair, big shoulder pads and people coming back from the dead when they are feeling down? Anyway, my attempt at writing (if that’s what we are calling it) is repeated over and over until days (in this case weeks) later I finally get something that I’m vaguely happy enough to post. I write a lot of rubbish that doesn’t quite meet the cut believe it or not!

Fatigue is a strong enough word to explain it. It’s not just tiredness. It is an all-encompassing heaviness that leaves you unable to do anything but rest and sleep. However, it doesn’t matter how much rest you get, you never wake up feeling refreshed. Even if I have an amazing nights rest within half hour of waking up, I can be forced to go back to bed again. There isn’t really a choice in the matter.

You get perfectly sensible suggestions from people that mean well. like ‘try to get up and make yourself do something’’ or  ‘sitting around all day never does anyone any good’ (a direct quote from a judge at my benefits hearing!) or ‘try to snap out of it’. I’d love nothing more but these suggestions don’t work during a crash from adrenal fatigue. The more I push the harder it pushes back. It’s not depression or laziness or lethargy. It is like when you have flu but every single day. In the morning my activity tracker can tell me I’ve had a great nights sleep but my body thinks otherwise. I have to fight the urge not to launch said activity tracker across the room. During these episodes I can however, get bursts of energy in the evening – great, just when I need to start winding down to go to sleep.

So, what exactly is Adrenal Fatigue? Well there are lots of theories – nothing is simple with chronic illness, right? This is my take on it. It generally seems to start after a chronic infection or extended period of stress. With chronic illness you’re trying to keep going and going when your body is struggling to just get through the day. Pushing and pushing all the time. During this time you are in flight or fight response as this is how your body responds to stress and survives. Your adrenals are small glands that sit on top of your kidneys, they pump out hormones in response to messages from your brain. I’ll go on to explain how this messaging system works and how Lyme disrupts it in a future post as this is far too much science for one day! This means that your adrenal glands are pushing out lots of cortisol which is your stress hormone. This effects your blood pressure, heart rate, immune system and your response to stress. In evolutionary terms your body thinks that you are being chased by a Sabartooth tiger but FOREVER!

So, with an illness or stressor that lasts for a long time your body can not sustain this survival mechanism. Your adrenals essentially burn themselves out after working so hard to keep up. Consequently, hardly any cortisol is then produced and you find it hard to function. It’s like a car that has been running on fumes for such a long time that eventually you just totally knacker the engine. I have been driving my car like I’m Lewis Hamilton going around Monaco when really I should be doing ‘Grandma Sunday Driving’. My problems is is that I still think I’m a sports car when I’m just one step away from the scrap heap! Ok, Ok I’ll stop with the car analogies!

So, what do I have to do to try and fix this? Reducing stress is really important as it’s just putting more pressure on your over worked adrenal glands to produce more cortisol. You can do this with deep breathing, guided meditations or yoga if you have the energy to do it of course. When I do have a little energy I do try to use it, but not all of it. Just light exercise like a short walk, some yoga or even just cooking myself a meal. The key is to keep it light and I’m terrible at getting this balance right. So yes, people are right when they suggest a walk but you have to listen to your body and do what you think is right for you. Encouragement is great but you have to learn to stand up for yourself if you’re not feeling it. Only you can know how you are feeling.

A good nights sleep is important. I know I can still feel terrible after even a great nights sleep but getting your body in a good sleep routine can really help. Your circadian rhythm (how your body knows when its time to go to bed or get up) is linked to your cortisol levels. You’re supposed to have a lot in the morning to keep you going and then it dips in the evening so that you sleep. So trying to restore this can really help.

I eat a healthy diet with no sugar, dairy or processed foods but plenty of fruit and vegetables and I never have caffeine. I do feel like I need a double expresso every ten minutes but I avoid caffeine as it’s adding more stress and continuing this vicious cycle.

There are loads of supplements that claim to support your adrenals. I take Ashwangdha, phospholipid complex, magnesium and cut cumin. However, I needed a bit of extra help – my cortisol levels had flat lined! It is controversial (yay another thing the medical community can’t agree on) but I have been put on very low dose steroids. Some doctors say that steroids should be avoided during an infection but a really low dose is not immune modulating so should not have a negative effect. The concern seems to be that if you give lots of steroids your adrenals then stop producing their own but with a very small amount this should not be happen. My cortisol level was so low my Doctor wondered how I functioned – well I wasn’t really. I know just replacing it doesn’t address the problem, but It can help with the symptoms whilst we work out the rest. I have been taking them for a few weeks and although I have fatigue it isn’t that crushing fatigue that you can’t function at all with.

So, my fatigue has improved and I was doing much better for a few weeks. Unfortunately, now my vertigo has come back with a vengeance. Little things I was starting to take for granted like getting to yoga on my own have once again become tricky. If I even go at all. I’m having to spend a lot of my time laying flat on my bed in the dark trying to get it to settle. I’m hoping this is just a blip and that I will start to improve again. Understandably there is that worry that I won’t improve – my mind in over drive that is not helped at all by too many hours laying flat on my bed in the dark…

At least I have had those periods of improvement. Glimpses of the life I so badly want back!

I will get back to that farmers market and I may even figure out how to control the ‘Houston Humidity Hair!’. I’ve done it once I can do it again.

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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) eight years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

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