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Getting the ‘right’ help – part two

July21

So, I nervously returned to the drug and alcohol service to get started on my Benzo taper. I was once again spot tested for illegal drugs. I had to do this every time I went there and it never got any easier. I had to smile to myself at the irony, only an hour previously I’d been shovelling Spirulina into my green smoothie – the closest thing I’ve come to a powdery substance! Putting dangerous illegal substances was definitely not part of my problem but I understood why it had to be done.

It was explained that I would begin with switching from my Clonazepam to Diazepam as we had discussed previously. I was now down to 500mcg of Clonazepam which is roughly 10mg of Diazepam. I met with the nurse that prescribes the drugs and my caseworker again and it was all very reassuring, positive and almost jovial. However, they wanted me to cross over drugs in a matter of days, but I had read from multiple resources that this should be a process over weeks. I questioned this and got told told in no uncertain terms that I do it this way, or leave their facility. It was scary how badly they reacted to what I thought was a perfectly reasonable question but I was so desperate for help I went along with it. It was no longer friendly – I very much felt like I was a naughty student in the head mistresses office.

The nurse then wanted me to transfer to a much higher equivalent dose of 15mg Diazepam which made no sense to me. Why go up to come down when I’d spent so long trying to painfully reduce to that dose? I asked this question and this was a big mistake as she was now positively fuming. I just wanted her to explain why but I was repeatedly told ‘this was just the way we do it’ and to ‘leave if you don’t want to do it our way’. I really needed their help (or so I thought at the time) I was in a catch 22 as they were now prescribing my benzodiazepine and missing a dose would put me at risk of more seizures. I had no choice but to go along with their plan and they knew it.

I continued to argue my point and she stormed out, shaking her head at me to speak to some other prescribers. I was not popular at all and I felt really awkward. My case worked then returned half an hour later with a prescription for the exact equivalent dose of 10mg Diazepam. No explanation. I didn’t see the nurse again. I highly suspect that she had her conversion calculation wrong which didn’t exactly fill me with confidence. I quickly found out that asking questions was very much seen as me rocking the boat. This was not the partnership I had been led to believe at the first meeting. It was very much a case of doing exactly what they say, no questions asked and be grateful for it.

 

I then noticed that the prescription was prescribed for one day at a time. For years I had been prescribed ridiculous amounts of this stuff and now I was only trusted to have one tablet at a time. I have never abused my prescription. I had only ever taken it as prescribed, never had any high, hell, I wasn’t even getting any benefit at all from it at all. It was me that flagged up to my doctor that I don’t think I should be on it anymore and me that instigated coming off it. Yet, now I was being treated like someone who had an addiction problem which was not the case. Cutting off my supply was ridiculous. I didn’t want the evil stuff. It just made every day more difficult for me. The fact that I have a chronic illness was not taken into account at all. I had to try and stumble around Sainsbury’s with debilitating fatigue and vertigo AND going through withdrawal to try and get to the pharmacy each day it was a total nightmare. Eventually I would be given one weeks supply at a time. When COVID hit I was given two weeks at a time to try and reduce the number of times patients left the house, so that was actually a real relief for me.

After a couple of weeks I started to have real difficulties with the withdrawal symptoms. I was reducing the dose by 1mg every two weeks, what I now realise is a pretty fast taper and a very fast taper for someone who has already had seizures due to withdrawing too fast. I was feeling more anxious and ‘out of it’, I hardly slept because of the insomnia and my vertigo was terrible. I would see my case worker every two weeks for about two minutes when I picked up my prescription. After dropping from 8mg the symptoms ramped up a bit but I was continually told it was nothing to worry about. When I got to 6mg I started having little seizures again which was terrifying. I also started noticing strange sensory symptoms. For example a song from the radio would get stuck in my head but it would be one line on repeat and feel like the song was being played in real life, it was really intrusive. I thought my doorbell was faulty as I would hear it ringing at random times throughout the day. It wasn’t faulty it was my brain struggling.

 

I called my case worker to say that I did not want to reduce the following week as little seizure like episodes were starting up again.  I explained that I thought I needed to level out for a couple of weeks before continuing on with the taper. I thought this was perfectly reasonable. She said she had to check with the prescribing nurse and I was called back later that day to be told simply no. I had to reduce the dose. It was explained to me that we had decided the taper plan at the initial visit and I had agreed to it. I had signed a contract and had to abide to the initial plan. I thought I had agreed to a taper where we assessed the rate as we went along but I was told that I was wrong. They prescribed my benzodiazepine so I had no choice. If I wanted to change the schedule I would have to have an appointment with one of their doctors, but the next available one was in six months time – so that was helpful. I was due to drop in a couple of days time. I was simply terrified and I knew I could not physically do it. They had all the control as they prescribed my medication but as time went on it was very apparent they had very little experience of working with benzodiazepine withdrawal. Withdrawal is scary enough without the realisation that you were being forced to do something dangerous because the ‘experts’ did not know what they were doing.

In a total state I made an emergency appointment with my own GP and explained the situation. I even took in evidence that shows that tapers should always be client led and you should never be forced to drop a dose. I was confident that she would help me. I was so scared of having another full on seizure, and rightly so after my recent hospital admission. Delaying dropping the dose seemed the safest thing to do. She leant back in her chair, folded her arms and said she would not get involved. I simply could not believe it. I felt very much that I was seen as being ‘difficult’ and that my concerns was just drug seeking behaviour. The doctor could not recognise that there is a difference between dependency and addiction, ironically to something they’d been practically encouraging me to take for years.

Thank goodness for the Bristol Tranquilizer Project who came to my rescue. God only knows what would have happened if I had been forced to make that drop when my brain and body was already clearly struggling so much. It is so important to get help with your taper from people who have experience of the process. They should be able to answer all your queries without getting defensive and the rate should be led by your symptoms, never by some pre-agreed plan made before hand as you never know how you’re going to feel once you start dropping the dose. My experience is that pretty much anything can come up as I was soon to find out…

Getting the right help with benzodiazepine withdrawal…or so I thought

March12

So, after my rather disastrous withdrawal attempt it was clearer than ever that I needed more help. I went to see my GP and his advice was to just go slow which isn’t that helpful. What exactly is slow? I thought I was going slow when I ended up in an ambulance. I understand it’s not his fault, withdrawal from benzodiazepines is poorly understood and not always taught properly. I don’t expect my doctor to know about everything but it worries me how easily doctors start these medications without understanding the complexities of how to come off them. I was advised to find a local drug and alcohol service and this seemed like a sensible plan.

It was a really daunting process sitting in this cold, smelly, run down waiting room filling in forms about my criminal convictions (none unless parking tickets count) and perusing timetables for needle exchanges when the only substance I’ve injected into myself is vitamin B12! I felt very much out of my comfort zone. I was being stared at by other clients, asked for cigarettes and glared at when I said that I didn’t have any. It was definitely less ’28 Days’ and more ’28 Days Later’ type of vibe that’s for sure. It was really depressing but I knew I had to just suck it up and get on with it if I wanted the right help. I’m sure nobody in that waiting room wanted to be there – we just all badly needed help from the claim these substances had over us.

The assessment with the nurse was equally as intimidating being asked rather personal questions about my illegal drug habits and sex life. I flip out when there is high fructose corn syrup in the ingredient list of a gluten free snack that’s falsely advertised as being a healthy alternative, so you can imagine how that conversation went. When I was asked if I’ve ever sold my body in exchange for drugs I joked that I get mine from my GP for free with absolutely no sexual favours involved. He just can’t seem to give me enough of the stuff. It didn’t go down well. I use humour when I’m uncomfortable. I was very very uncomfortable. She was not impressed and it was very clear to me that this was not a place to joke around.

I was then taken to the bathroom whilst the nurse stood outside the door whist I attempted to pee in a pot. I remember sitting there thinking ‘how on earth had my life come to this?’ I’m so health conscious, I’ve never even smoked a cigarette. I eat Kale for goodness sake and here I am being random spot tested for Heroin! I nervously awaited the results. Yes nervously, like I’d done hard core drugs and forgotten, like you do. What a day. It was humiliating considering I’d never abused an illegal drug in my life and had only ever taken benzodiazepines as instructed, but I understood it was a process that everyone who came for help had to go through.

I was given a plan with a timetable of my withdrawal schedule. It very much followed the Ashton Manual which is the most recognised resource for withdrawing from Benzodiazepines. I would cross over from my Clonazepam to Diazepam (another long acting benzodiazepine) which is done as it comes in smaller tablets so it is easier to reduce in smaller amounts. I would then reduce the dose of Diazepam by 1mg every two weeks. I was to see my caseworker every two weeks and if I was having any difficulties we could discuss it and adjust the schedule. It seemed really sensible plan to me so I agreed, happy to finally get the right help but with this gnawing sense that something wasn’t quite right. I should have listened to my gut.

 

I was soon to find out:

  • The limitations of the Ashton Manual
  • Why drug and alcohol services are not designed for people withdrawing from prescription medications
  • The difference between addiction and physiological dependency
  • The importance of getting the right support

Stay tuned

When the benzodiazepine withdrawal s**t storm hit

March5

So, here we are nearly a year after my last blog post. I think most people found 2020 to be a rather trying year. To me it will always be remembered as my year of living through absolute hell, but also the year when I overcame and survived withdrawing from benzodiazepines. It has hands down been the hardest thing that I have ever gone through.

I have plenty to say about my experience but I’m having difficulties with reading, typing and looking at screens which clearly makes blogging rather tricky. Reading more than two lines makes my brain spin out. Today I’ll start with what happened when I tried to come off my medications too quickly. Just a warning that this blog post could be potentially quite triggering if you’ve had a bad withdrawal experience or if you’re thinking of coming off benzodiazepines yourself. This all happened because I did not get the right help and withdrew way too fast for me.

I’ve been trying to come off benzodiazepines for what feels like forever, but I guess in reality it has been more like eighteen months in total so far. I have been slowly coming off the equivalent of 35mg Diazepam. As of this week I am not currently taking any benzo (big whoop whoop) but my brain is still very much desperately staggering around trying to work out what’s the new normal – I’m far from recovered but I am finally starting to heal.

So, back to November 2019 when I had a massive wakeup call as to how dangerous these drugs can be. I’d already spent over two years getting off several other drugs which had been a pretty awful experience. I felt through having these experiences I knew what was in store for me – I was wrong. I was making what I thought was the last push to try and get free of all the drugs which had once helped but were now making me feel much worse. This is the way such addictive drugs work. Your brain chemistry adapts so you need higher and higher doses to get the same initial effect. Unfortunately, I’d got to the maximum doses on all of my medications. Each time I hit the ceiling on a dose of medication, another was added in. Eventually the day came when the mammoth task of getting off them all began. It was always something I pictured doing when I was 100% better but that day never came, I now realise it never would whilst I was so highly medicated. I was on so many drugs at such high doses I often had Doctors impressed that I was even still standing. I think that I’d lived in such a flat, foggy haze for so long it had just become normal. I really didn’t know if the fatigue and crazy symptoms I was getting could even be all put down to Lyme disease. The picture was pretty muddy. Feeling tired and ‘out of it’ was just my default mode

 

In preparation I went online, like you do, and read all the information on the addiction sites about what to expect from Clonazepam withdrawal. Clonazepam is a long acting benzodiazepine. I expected some of the side effects, having had some of them from trying to come off Lorazepam (another benzodiazepine but a shorter acting one) over the previous year. It appeared that some people were fine, others struggled and some had a total nightmare. I ignored the complications of seizures, coma and death (because who wants to think about that?!?) and decided that that wouldn’t happen to me. I was working with a Doctor that I liked, I was dedicated to my super healthy diet, Yoga, Wim Hof breathing followed by an ice bath, and Dr. Joe Dispenza guided meditations to help me through the withdrawal. I truly thought with this strategy I’d have it under control and be off the medication in a matter of weeks. I think that will sound pretty funny to anyone who has ever got off addictive medication. There is always a place for positive thinking and coping strategies but I think I had my head in the sand about the reality of the situation.

I did the first reduction and I didn’t feel half as bad as I thought I would. I dropped from 750mcg to 500mcg of Clonazepam. I had insomnia and some anxiety which was to be expected. I experienced worsening of my vertigo, dizziness/disequilibrium which I also expected. I was coping with it well and my Dr had told me to drop down another dose after a couple of weeks if I felt ok. ‘Brilliant, drop another dose and I’ll be off this c**p by Christmas’ I thought to myself. I dropped it to 250mcg two weeks later as planned.

Four days after the drop, I’d just done my Wim Hof ice bath and felt really exhausted so decided to put a ‘bubble gum’ film on TV to try and relax. Halfway through the film I started to feel really confused and could not follow the plot. I turned off the TV and realised I was really confused about absolutely everything, not just the plot. I felt really distressed and scared. I thought I’d try and sleep it off but thoughts were racing around my head rapidly, my eyes were twitching like crazy under my eyelids. It felt that my thoughts were getting faster and faster, unable to stop on anything long enough for me to work out what it even was. It was like I was falling through my mind. It’s very hard to explain. I somehow called my Mum as I knew something really odd was clearly happening. By the time my Mother arrived I was screaming at her to get an ambulance. My poor Mum has tried to get me to hospital multiple times in the past if I’ve had worrying symptoms but I’ve always flat out refused to go. So, she knew there was something seriously wrong for me to be screaming at her to dial 999.

Initially I thought I must be having some sort of panic attack. I clearly remember thinking to myself ‘bloody hell this is awful, I can’t believe people go through these on a regular basis’. Then I started violently jerking and shaking and I knew something was really wrong. Unbeknown to me I was having an extreme withdrawal reaction from reducing the benzodiazepine too quickly. I thought I was coming off the benzodiazepines slowly with the help of my Doctor, but that was another important thing I had totally wrong.

I would have a brief period of lucidity for a few seconds and then my arms and legs would start to jerk violently. I would then lose the sensation down the left side of my body and start to slur my words. It would just get worse and worse until I could feel myself slipping away. Leaving my body. I could see everything was going on but I was drifting away into a tiny corner of my brain where I had no control over my body. Everything would then go completely black and I would think that I had died. I had to claw myself back again to lucidity to then go through it all again. This happened over and over and over. Writing this now brings me out in a cold sweat. It was almost too horrific to even feel real.

In a brief period of lucidity, I eventually realised that it must be the withdrawal causing the seizures and I remembered I still had some short acting benzodiazepine (Lorazepam) in my cupboard. I knew my brain needed benzodiazepine quickly but getting that across in my state wasn’t exactly easy. My mum was absolutely amazing and God knows how, but she managed to work out what I was trying to get across. Bear in mind I could hardly talk, I was trying to point at the cupboard even though I had no control over my limbs. Thank goodness for all those years of charades at Christmas! After about twenty minutes of taking the lorazepam (the fast acting benzodiazepine) the severity of the seizures lessened.

An ambulance took me to A&E. Time had been totally distorted. Waiting for the ambulance had felt like an eternity and I thought I was in hospital for about an hour. I had blood tests, examinations and scans that I don’t even remember. I was fortunate that I saw a Doctor whose best mate worked in Psychiatry and had witnessed patients having seizures from coming off benzodiazepines first hand. So he understood that what I had experienced was a reaction to coming off benzodiazepines. So many Doctors are not aware of the problems of prescribing these drugs for more that four weeks, let alone the dangers of trying to navigate coming off them.

I will never forget this episode. I’ve never been so scared in all my life. I’m very independent (when I can be) and I like my own space but bloody hell, I didn’t want to be on my own for a long time after that. It haunts me still. I have had a few more episodes since that awful experience, always when my brain isn’t happy with the taper speed, but never as bad as that day. During my year long taper the worry is there with every single drop. Will this drop cause another seizure? It is a very hard way to live and not at all relaxing…even less so for my poor Mother who has pretty much been on emergency stand by all year.

It’s funny what goes through your head in such crazy circumstances. I very clearly remember laying there on my floor during one lucid moment thinking to myself ‘that’s just great. I’ve done all this crazy stuff in the pursuit of my health. I’ve been so strict on my diet, I’ve not had chocolate for years and what was all that deprivation for? To be taken out by a little white pill!’. The following week I had chocolate profiteroles. Yes, the works – chocolate, processed sugar, wheat, butter, egg and cream. Do not judge me, they were my NDE (near death experience) treat. It made me realise that it’s so important to get a balance with things, you really don’t know what’s around the corner. If you’re desperate for a piece of chocolate just have it for goodness sake!

I’d like to say that I learnt from this experience, got the help I needed and breezed through the remainder of the benzodiazepine taper but that’s far from the truth. I had a lot more to learn that I plan to share on my blog over the coming months. Don’t do drugs kids, even if they are prescribed really do think about it first.

I have to add that this has taken me an absolute age to write this post. Very slowly writing this sentence by sentence. Printing off and correcting each paragraph so that my brain doesn’t ‘flip out on me’ (not quite the right medical terminology but it describes it best) has taken weeks. I am very proud that I’ve managed it though. This is a big win for me and I’m looking forward to writing more as I have so much to share.

So, where were we?

May22

My oh my how time flies by. I can’t believe how long it’s been since my last post but I have some pretty good excuses and a lot of stories and great information that I can’t wait to share.

I was in America having treatment for Lyme, co-infections, adrenal fatigue, hypothyroid and mould toxicity. So just a few things. I was doing quite well and then crashed and we had no idea why. We had the house that I was staying in retested for mould and it turned out that there was mould in the air conditioning. Not ideal! So, this was promptly fixed and the epic task of de moulding all my clothes and furnishings was once again completed. I restarted the mould treatment which then made my symptoms flare up. However, because I had felt so much better after I was previously treated for mould toxicity I knew this would pass. I was excited to see what my health would be like after the treatment.

I was in bed a lot, had more vertigo and dizziness but I was managing to get out and do some things. I would go for a yoga class in the park or a Wim Hoff session (this is an awesome method that deserves its own entry!) and I’d be really happy. I even went out for dinner a couple of times and was starting to develop a social life and make some really good friends. I totally fell in love with my yoga buddies and the quinoa pancakes at my Sunday brunch yoga class. I threw myself into the world of sharing circles, singing bowels, Acroyoga and even a yoga silent disco. I was officially more of a hippy than when I had started!

Then disaster struck and I realised that my visa was running out (bloody paperwork!) and I had to leave pronto if I wanted to return to the USA again. I was devastated as I was pretty positive that the treatment was working, and I didn’t want to stop. I knew I’d really miss Mary and Andrew, my lovely friends and all the fun activities that I could join in with. It made life so much easier (and fun) having things that I could manage right on my doorstop. If I became too ill it was only a couple of minutes in an Uber to get home to the safely of my bed. That gave me a lot of confidence to try things that I wouldn’t necessarily have tried before.

I’m so grateful for Mary and Andrew giving me this opportunity to try all these new things that were available to me. They always encouraged me to try more and more. I could spend a day in bed, come down in the evening to announce that I was trying a hot yoga class in an hours’ time and they wouldn’t bat an eyelid. They never made me fearful to try things that on paper were potentially not a good idea for someone with my symptoms to try. Always cheering me on when I came home after a successful trip out. I can safely say that Mary and Andrew are the most fun people I’ve ever lived with.

Clearly, if I wanted to partake in an activity I would have to rest before and be aware that I would sacrifice time after to recover but I’ve played this game long enough to make my peace with this way of life. Although, I’d be totally lying if I said it doesn’t still really piss me off or confess to actually mastering this concept! Sometimes this worked, sometimes it didn’t but hey, at least I put myself out there and tried which is not easy when you are so restricted and can pass out at any time.

Although I was keen to see my family, the thought of going back to my lonely village in the UK with not a yoga lesson (or ray of sunshine!) in sight was a seriously depressing. It turned out that the universe forcing me to go home was the best possible outcome for me as the mother of all shit storms was heading my way…

Every cloud has a silver lining after all.

Toxic mould – scary or what?

July17

I had a practitioner a couple of years ago who asked me if I had any mould in my home. How vary dare she? Just kidding, do you think I had energy for cleaning especially when I had my mum armed with a Henry Hoover living just down the road? The Doctor was convinced that exposure to mould can cause many neurological symptoms and even prevent recovery from illnesses like Lyme Disease. Where as I was convinced she was a bit nuts. I totally dismissed it, just another thing that sounds crazy and something I really didn’t want to have to deal with.

I’d come across people in Lyme support groups online discussing mould. They had spent thousands, having their homes professionally assessed and mould cleared if they found it. People were having to move, throw away soft furnishings and heaven forbid their clothes! All that hassle and throwing away all my clothes – no thanks, head firmly in the sand.

Over the following months this idea that mould may be causing me problems niggled at me. My symptoms were getting worse and I didn’t know why. Maybe I should check this out? I half heartedly bought some basic agar plates from Amazon and conducted my own scientific study. They obviously came back showing ‘stuff’ but I didn’t know what I was looking at even after hours of google searching. I told myself it was just normal, we don’t live in a sterile environment (certainly not in my house!) so something would grow. I could not afford to get my home tested and I certainly couldn’t afford to have mould removed or to move out. I was so exhausted I couldn’t even bare to think of having to move. At this time my anxiety was through the roof and I couldn’t deal with anything even slightly stressful. It was far easier to put my head back into the sand (well at least there wasn’t any bloody mould in there!)

After I left the UK for treatment in America my mother cleaned my home. I’m very lucky, I know! However, she found mould behind the curtains. I should be ashamed that I hadn’t even noticed but I’m not. It sounds crazy but I’d have loved to have had the energy to clean. There was also water damage behind the shower – a perfect storm for mould to grow.

I went to America still pretty much in denial of this crazy fad mould illness. I had my urine tested for mould mycotoxins and surprise surprise it came back with elevated gliotoxin (which is released from several fungi). Once more I was horrified and pleased at the same time. Something we can fix but why hadn’t I listened to the advice I was given months ago?

There is a lot of symptom crossover with Lyme and Adrenal fatigue just to make diagnosis that little bit more complicated – just what we need! If you are suffering from mould toxicity there are so many symptoms that it can be responsible for and here are just a few that are relevant to me:

  • Headaches and migraines
  • Brain fog/memory changes/ change in cognition
  • Anxiety/depression/irritability
  • Chronic fatigue syndrome
  • Fibromyalgia
  • Neurological dysfunction
  • Hormone changes

The mould effects your white blood cells and is therefore not uncommon to be seen with Lyme disease. From what I have read it seems to be a bit of a chicken and egg situation. Does the mould cause a weakened immune system so that Lyme can take hold or is it the other way around? All I know is is that its important to get rid of it.

Initially I was treated with so many herbs and tinctures I couldn’t even name one of them for you. This was during my ‘Must Attack My Body as Hard as I Can Whilst Withdrawing From Highly Addictive Drugs’ sensible phase. The ozone therapy that I am now having can also kill mould (as well as the Lyme and viruses). It’s truly awesome stuff isn’t it? I wonder if it can cure world hunger too? I have been taking cholestyramine which is used for people with high cholesterol (something I clearly don’t have a problem with, I haven’t seen so much as a doughnut in years!). It is used off licence to basically mop up all the mould toxins when you kill it off. I’m hopefully being retested soon and that the resolution of the mould will help me on the way to my recovery. It will be nice to take one problem off my list of illnesses.

I’m also managing it by having a mould free diet on top of my normal diet. Things like nuts, alcohol, coffee, chocolate – so nothing anyone would ever miss really. I eat loads of fresh fruit and vegetables, nothing processed, even things as harmless sounding as tomato paste can trigger someone with this illness. I also diffuse essential oils in my room, alternating between Oil of Thieves, Bergamot and Rosemary to keep the air as clean as possible. You should always check your ventilation and air conditioning units. You could actually be living in a mouldy environment where one person is really sick whilst the others feel no ill effect. Apparently up to 24% of people have an abnormal gene that prevents you from breaking down the toxins that the mould creates.

 

 

For now, I’m still treating mould as once again there is no quick fix. I’m taking it one day at a time and trying to get enjoyment where I can. This was July 4th – I’d passed out due to evil vertigo about an hour before this picture was taken but I got BACK UP again! For now that is all I can do.


Oh, and if you ask me about giving away my clothes now. Please, please, please just take them all if it will make me feel better!

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.

Is this the winning combination?

June11

So, we went right back to the drawing board as we have been trying so many new things and not really getting anywhere. I had pretty much every test under the sun done. Each time I dismissed the test as unnecessary. I can’t possibly have that? Then it would turn out that it was quite key in the management of my illness. Left untreated I would never get better. It’s like lots of pieces of the jigsaw puzzle finally coming together.

It’s hardly surprising that other medical conditions have now come up. I have been sick for so long my body has just turned to mush and given up fighting. Everything is out of sync and there is a total riot going on and it all needs to be sorted.

I’m almost out of fingers and toes to count all of the things that have now been found to be wrong with me – or as Mary and Andrew would say ‘what we now know we need to fix”. Love them!

1. Lyme (obviously)
2. Bartonella
3. Mould toxicity
4. Hormonal imbalances
5. Candida
5. MARCoNS
7. Hypothyroid
8. Adrenal fatigue

I’ll go into more details of each in a later entries as just remembering all of them has used up most of my brain power which is fairly limited at the best of times. It has genuinely shocked me making this list as that’s a lot! No wonder my poor body has been struggling. Just having one of those problems could make you feel rubbish and I’ve got a pretty full dance card!

My treatment is far less aggressive than it was. The old me would be worried thinking that the harder you hit the bugs the quicker I get my life back. The new me knows better. When I batter my body with treatment I do just that, batter my body.

 

I’m now doing ten pass ozone therapy once per month. This stuff is amazing, it gives me about ten times more energy than I normally have and also kills all the crap that’s in my blood. It’s like magic and I wish everyone had it available to them but it’s rare to find and expensive. I’m so fortunate that Andrew makes the eight hour (plus) round trip every week (now its once a month thank goodness!). I sleep all the way there and sing all the way back – he deserves a medal for just listening to my singing let alone the rest!

I’m addressing all the hormonal imbalances. Pretty much everything we tested came back too low so everything is now being replaced. Simples.

I’m having IV NAD (nicotinamide adenine dinucleotide) twice per week. Studies have shown really promising results of using NAD for helping with chronic fatigue syndrome. It also helps with drug withdrawal and aging (awesome side effect or what?!?). When I’m tired my symptoms are always really bad so although it may not ‘cure’ me as such it will help to manage my symptoms. However, my doctor has a theory that my body having more energy gives my brain more of a chance to repair itself. The NAD works by producing ATP (check out the Kreb cycle if you’re in geek mode) which is the energy that your mitochondria (your bodies batteries) make to keep your body going. It’s a relatively new therapy and once again I’m extremely fortunate to be able to try it.

Then supportive therapies:

  • Red light therapy
  • Infra red sauna,
  • Light exercise – mainly yoga or funny mini workouts that Andrew finds on the internet. They are so hilarious – in particular the demonstrations, so you can add ‘laughter therapy’ to the list!
  • Meditation
  • Epson Salt baths
  • Juicing
  • Diet – of course no disease management would be comlete without a good ‘ol diet restriction!

I’m now on a diet that I enjoy. Yes another one! I’ve become a genius at creating meals out of the most random ingredients ever  – move over Deliciously Ella. Although, I’ll never have the ‘looking great in an apron’ thing nailed. I look more like I’ve been in an explosion at a paint factory! Now I have no gluten, grains, dairy, sugar, processed foods, cheeses, chocolate, coffee and other items that could contain mould like tomato paste?!? It’s a bit of a minefield but I think I’m getting there. Oh and if you think that’s restrictive check out the candida diet. I did the candida diet for months and it was miserable. Hats off to anyone who had to do that long term.

So, I’m now really hoping that this more gentle approach is the way to go. I still have a lot of prescription medications that I need to get off, it’s not fun but it has to be done.

So far do good though. I’ve gone from being unable to stand Christmas Day to now frequently doing yoga classes (even playing in the fountains after one!), building up my walking and meeting new people. I even have an Uber account which is so exciting when you’ve been so dependent on others for so long. It wouldn’t have been safe a couple of months ago as you would not of been able to guarantee that I could stand up by the time I’d get to the destination. Although, if I have one more driver ask me about Brexit I may cry.

I’m being cautiously optimistic. It’s such a different route to everything I’ve tried before and that’s not a bad idea.

I have an amazing team behind me. Mandary (Mary and Andrew) who I can’t even put into words how grateful I am to them. They have given me this amazing chance to get my life back. I have a great Dr treating my long list of problems, a lovely family practice that not only give me my NAD infusions but emotional support (and a constant flow of ideas that they have researched) and of course all my friends and family.

Bye bye Lyme!

Shall we have a recap?

June2

OK, this has been going on for so long even I’m confused about it all. Lets have a mini (well as mini as almost a decade can be!) recap of the last few years and also share what I’ve been going through over the past couple of months.

So this is how it all started:

I was a 30-year-old fit and healthy woman. I had a job I had worked very hard for and loved, a relationship and my plans for the future were exciting. Then 22nd of June 2010 I got sick. Yes, I remember that day as it was the day my life would change forever.
I had been on a sailing holiday in Turkey where I had what felt like flu at the end of the week, covered in insect bites from running around barefoot on the islands we’d stopped at. On the last day I just sat drinking coffee trying to ‘snap out of it’ as I was so tired, achy, foggy and had vertigo. Everyone else went shopping – now you know I must have felt ill to not go shopping!

On my return home my balance and fatigue got worse and worse and I felt like I was on a really rocky boat all the time – hence the name of this blog. It was initially thought to be viral, then months later migraine and years later Lyme disease. However, when I didn’t respond to traditional treatment (four weeks of antibiotics) I was then told I didn’t have Lyme as the antibiotics I’d been on would kill ANYTHING – well they had that so wrong! After seeing so many specialists I was eventually told I just needed Physiotherapy (I’d done that for years) and even I started to wonder if it was all in me head! I was distraught, spending my life in a dark room at my parents’ house. The loss was overwhelming – my independence, financial security, home, job and career, friends and my relationship (that lasted all of ten minutes!). I was torturing myself on Facebook watching my friends get promotions, married, children etc. I was happy for them, I’d never want my friends to be as unhappy as I was, but I felt my life was on pause and I was being left behind. I was lucky if I could get out and buy myself a pint of milk let alone a house!

Facebook can be fun, research suggests, except when it stirs up envy or depression.

They say you soon find out your friends are and that’s very true. When I first got ill I was flooded with cards, flowers and visits from people that wanted to help. As time went on this became less and less. I soon found I only had a handful of friends who I could truly depend on. People don’t realise that you actually need more support years down the line when you are struggling after so many knocks. I then started to not be invited to things, the reason being ‘we knew you were too ill so we didn’t want to upset you’. Not realising that being left out felt far worse. Friends would be cross if I cancelled last minute not understanding that I wanted to be there, the last place I wanted to be was in bed but the crushing fatigue was so bad the thought of just getting in the shower totally exhausted me.

My life is a total roller-coaster. I have tried so many treatments for Lyme and co-infections over the years. I have had periods where it felt like a treatment was working and I’d get so excited and could imagine having a future again only to be knocked on my ass again a few days or weeks later. I pick myself up over and over and over. I think I’ve been on every antibiotic known to man, several anti-epileptic drugs on doses high enough to knock out a rhino not to mention the Herx (die off) reactions and side effects of all the drugs.

So now? Well I’m trying the alternative route and I’m still having knocks. This isn’t a shock at all as this has been my life for almost a decade. I know that there is no quick fix. It feels like one step forward and two steps back a lot of the time. I have discovered that the most important things in life are your health, family and friends. I have learnt to hold on to the people that pick you up over and over again, always make sure you explain to people how you feel (they are not mind readers) and have patience with them as they will never truly ‘get it’ but just wanting to understand means the world. Oh, and people that bring you down have to be kicked to the curb!

 

I’m now onto new and exciting things being supported by an elite squad of straight talking, smart, practical, hilariously funny, positive and caring friends aka Mandrary (Mary and Andrew) – Lyme doesn’t stand a chance! Watch this space 🙂

Up and Down

March25

Well, the last couple of weeks I’ve had a couple of good days followed by a couple of bad days. it’s so frustrating! On a good day I have managed a yoga class or a short walk and cooked myself dinner. On a ‘bad’ day I sleep all day or binge watch Netflix  (I definitely get my moneys worth out of that subscription!).

So, this is where the Spoon Theory comes in. it’s a great way to explain how you managed to do something one day and look fine, but then spend the next few days paying for it – with your spoons.

Basically a person with a chronic illness has 12 spoons of energy per day. Each activity that you do requires a certain amount of spoons. For example getting up and taking a shower could take 3 spoons, going out for dinner could take 6. So if at the end of the day you have used more than your 12 spoons, the next day will be spent making up for the extra spoons that you have used.

It’s a very good way of explaining to people and also a reminder to ourselves. I’m clearly using too many spoons up and then having to rest the next day. I seriously need to balance out my usage as I’m up and down like a yo-yo. The problem is that I know I need to push the envelope as if I don’t try to find my limits I’ll never know what I can and can’t do. My tendency is to push my limits way to far. Then I spend the next day paying for it not only physically but mentally. I get so mad at myself as I generally know when I’ve gone to far and I just can’t stop myself. I’m currently doing ten pass ozone and I have to say it definitely gives me more spoons which is awesome! I even managed to go to the mall one day – it was rather funny that the picture said ‘I STAND’ once I cropped it, after spending so much of the last few months laying down!


So, if you have a loved one with a chronic illness a wonderful gift is spoons. So cook a dinner for them, put out the bins or pick up some shopping. Then hopefully they will have some spoons left over to go for a coffee with you.

Starting AGAIN again!

March6

Well the past few months have been a total nightmare to put it mildly and I’ll be very glad to put it all behind me. Between starting so many new things and trying to come off old things my poor dizzy brain didn’t know if it was coming or going. The IV silver treatment was tough causing massive herx (die-off) reactions. Two hours after the treatment I would routinely get a chill, start to shake so much my body ached then get a temperature and a banging headache which would then clear. It was pretty scary the first time and poor Mary had to deal with a hysterical wreck on the floor – good job she’s calm in a crisis! I’d had herx reactions before but never as severe as this. Over time it became easier as I knew what was happening and that it would eventually pass. If I detoxed like a ninja I could generally nip them in the bud. Epson salt baths were a life saver.

The herx reactions also made my normal symptoms worse so all in all it was a bit of a terrible time. Having to sit on the floor to be able to make a cup of tea as I was too dizzy and ‘out of it’ to stand had become the norm. You really do take these things for granted, I mean making a cup of tea for goodness sake?!?

I returned home to England in December and stayed with my mother for a month. One of the drugs that I was on (Gabapentin – evil, evil stuff!) was likely making my symptoms worse as I was on such a high dose for a number of years. Oh the withdrawal symptoms from that. I can honestly say that has been the hardest thing I have ever had to do in my life and I have a new found respect for anyone trying to get off anything be it gabapentin, benzodiazepines, opioids hell even chocolate or coffee.

I would drop the dose down a fraction and two days later like clock work the shakes, anxiety, insomnia, nausea, migraines would kick in and then the following week my vertigo would get so extreme I could not stand. I had to repeat that cycle over and over again for months and it felt like it would never end. I got out the bath once and had no idea where I was or what I was doing – scary stuff. Thank goodness I had such an amazing support network around me. Mary and Andrew making me laugh daily, helping me to get through it all and managing my crazy dietary requirements. Poor Andrew has pretty much travelled the length and breadth of Texas (which aint exactly small!) to try and find rare and wonderful things that I could actually eat – sea kelp noodles exist, who knew?

It was so important to let them all know what I was doing, what was happening and that me crying my eyes out just wanting to die was entirely normal. My mother was amazing too and also struggled with my diet. When she was going shopping she asked me what I can’t have, I had such a long list she re phrased it to ‘well, what can you actually eat?’. On Christmas day I didn’t even get out of bed. Everything felt impossible.

That was over two months ago and I’m finally free of that awful Gabapentin woo hoo! Unfortunately the clinic I was going to closed as the doctor retired but in hindsight (isn’t that a wonderful thing?) it was too much for me, my body was just not happy at all. I pushed myself way to far in my desperation to get well again.

So, now what I hear you ask? Yes, here I am again starting over back in America. I’ve now backed off big time with all the supplements and herbal tinctures and just eating a balanced diet – I was becoming (and I still am) rather obsessed with it. As I was diagnosed with mould toxicity it’s more important that I avoid things like peanuts, mushrooms, canned tomatoes, alcohol and chocolate. Although i do have to admit to jumping on the celery juice band waggon!

I’m seeing ANOTHER doctor where we are using ten pass ozone which I’d never heard of. It’s like the ozone that a described in a previous post just much much stronger. Its very early days but I definitely feel like I’m getting some energy back. Whether that’s because I’m off so much prescription medication or the alternative medicine I guess only time will tell. Something has to work one day – I’ll never settle for a life spent in bed that’s for sure. There is no way the team behind me would allow that anyway!

My veins are all a bit buggered up from all the silver treatment, apparently that happens to some people so we are having some trouble getting a vein but where there’s a will there is a way.

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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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