First of all, if you have read my benzo withdrawal horror story don’t let that scare you, just know that there is a chance that you will have no difficulties at all. After talking with the Bristol Tranquilizer Project and general observation in chat rooms and the like, it seems the journey can go one of three ways:

1. You will have very few problems withdrawing from benzodiazepines.

2. You will have a hard time or,

3. You will go through utter hell.

I was one of the unlucky ones in group three. There is no way of knowing which one of these groups that you will go into. It’s not necessarily linked to the dose, how long you took them or even if you abused them – everyone seems to react very differently. So if you’re thinking of withdrawing I’d hope for the best but plan for any outcome.

The Benzo Brain:

The brain becomes very sensitive and unhappy when you take away the benzodiazepine which has been calming it down. I like to think of the benzo brain as one of those snow globes. Each time you make a drop in dosage you give that snow globe a big old shake. This can throw up a snow shit storm of random symptoms that will settle down with time. You have to do your best not to shake that snow globe to excess. Any little thing can nudge it and cause havoc with your symptoms: getting stressed, not sleeping, bad diet, up dosing, alcohol. Do everything gently and mindfully of that settling snow. That goes for everything from exercising to new supplements. Start slowly and be extra kind and gentle with yourself.

Know what you’re getting into before you start:

Most people experience a degree of rebound anxiety and insomnia, this is what these drugs are most commonly prescribed for so it makes sense that if you then take them away that these symptoms will rear their ugly heads. I took the benzos for neuro excitability (caused by my chronic Lyme), and insomnia. When the benzo was taken away from me I had difficulties with my senses becoming over sensitive and insomnia. When taken for insomnia, get rebound insomnia. Take it for anxiety, get rebound anxiety. Obviously there is no hard and fast rule, just an observation from personal experience.

I think that if we were told by the doctor ‘take this tablet it will help symptom X for a while, but there is a chance when you stop taking them, that symptom X will be even worse than it is now’ most people would never even start taking them. This is called informed consent. Informed consent should always be granted before taking any medication or medical procedure. I was told that I was on a low dose and it was inferred that there’re pretty much harmless. Errr no and hell NO. I won’t list all the withdrawal symptoms here as anyone can Google the long list of symptoms that are part of benzo withdrawal. Basically anything goes and you just don’t know what you’re gonna get – it’s a real life Russian roulette.

Get help:

Never just stop your benzo if you have been on them long term which is considered longer than 3-4 weeks. Always check with the doctor who prescribed them first. Just be aware that although they gave them to you, they may not necessarily have the right knowledge of the drug to help to get you off them safely. The guidance is to come off them slowly which can clearly subjective and can be interpreted as anything. As a result I’ve had physicians interpret that to mean a matter of days (hello ambulance) when unfortunately, if you have been on them long term the taper should be done over a period of months. So just make sure the people that are offering to help you with withdrawal are experienced. You are well within your rights asking them outright if they have the appropriate experience. Shop around for doctors until you find one that’s the right fit. If they’ve never heard of Professor Heather Ashton just bolt for the door in my opinion.

Definitely get the RIGHT support. I would never suggest going to a clinic or a drug and alcohol service unless you have a problem with addiction and not physical dependence. If you don’t know the difference get educated before handing over your life to them to control. If you have no problems stopping and have no cravings or get any kind of high, but it’s the withdrawal symptoms that you struggle with, chances are that your dependant not addicted. Do not sign your rights over to these people unless you feel you need strict drug regimens, drug testing and counselling to help with cravings. It was without a doubt one of my biggest mistakes that I made during my withdrawal.

Warn your friends and family that you may potentially turn into a ‘psycho bitch crazy person’ and to just take it all on the chin for a while. One minute I’d be laughing hysterically, the next wanting to end it all. People going through withdrawal are hard to be around, especially when we don’t really know what we want from those trying to help. It makes it impossible for them. Some days I could not be alone but others I needed time to myself. Just make people in your life aware that your needs can change quickly and to respect that and that it will be temporary.

How to taper successfully:

Start with checking out the Ashton Manual. This was the method that I used initially until it was too fast for me. Remember it is simply a guideline and has its limitations. It’s a good way to introduce doctors if you’ve got a ‘these are totally harmless you can just stop them’ doctor like I came across. I found that the taper speed was way to fast at the end for me, but I think it’s a really good place to start. It also involves crossing over onto the easiest (arguably) benzo, Diazepam, to titrate down on as it has more sizes of tablets available. Go as slowly as you need to – remember you’re tying to take away just the right amount of benzo to not cause that snow globe to shake excessively – what we call a smooth taper. You may need to speed up, slow down and alter the rate continuously throughout your taper.

When you get to smaller doses I’d advise crossing over to liquid diazepam as it’s much easier to measure out which makes it more accurate and thereby safer. Some doctors will tell you this doesn’t exist (this happened to me) it does, they just don’t know about it as it is not commonly used in everyday practice – another red flag if you’re trying to assess someone’s ability to assist you in withdrawing from benzos.

Try not to up dose, take Z drugs (zolpiderm, zopiclone) or self medicate with alcohol to feel better. It just causes kindling (I’ll do another post explaining this phenomenon) and only helps temporarily. You’re basically confusing the hell out of your brain. Your taking away the benzo and your brain really doesn’t like it, causing a range of symptoms whilst it tries to find its feet again. You have to sit this time out and wait for that snow globe to settle. By adding in more of another substance that acts in a similar manor you’re just topping it up a little bit, this will feel temporarily better only to confuse your brain once more and make it more difficult next time you drop a dose. You’re essentially tap tap tapping that snow globe each time you do this and the brain really doesn’t like it.

Don’t make strict withdrawal schedules and stick to them rigidly. You simply do not know how your body will react to each drop so how on earth can you plan anything with absolute certainty? At the clinic I was forced to drop every two weeks. If you look at the pharmacokinetics of diazepam (please bear with whilst I geek out a little) you can’t plan schedules around two week time tables. The withdrawal symptoms have not even peaked at the two week mark. So your making a drop in your dose without even letting your body tell you how it’s doing first. If you’ve a sensitive brain like mine was, this can be too much for you and trust me, your brain will let you know. It makes more sense to make cuts every four weeks to begin with so that you can monitor how you respond. I found that some symptoms would start about four days after dropping the dose but the peak of my symptoms happened at the two week mark. Waiting two more weeks for those symptoms to start to ebb and to then go through the whole cycle again made sense to me. I didn’t personally micro dose as I couldn’t get my head around how you’d know if the rate was right for you or not, but I can see how it could work – taking away extremely tiny amounts each day so your only giving that snow globe a gentle tap and never a huge shake.

Journaling:

Keep a symptom journal as the days can merge into each other and it can really feel like your making no improvements at all. It’s important to see how your body is reacting after each cut to then be able to adjust your taper accordingly. It’s also hard to be objective about your progress as it can feel pretty slow, but gradually things start dropping into place and it’s really helpful to look back and see the changes. It’s also a good way to release a lot of emotions by jotting down how you’re feeling. A lovely mixture of drug induced anxiety, hopelessness, depression, frustration, hate at the medical and pharmaceutical profession and anger at yourself for even taking the evil dammed stuff, if you’re anything like me. Oh it’s a total riot and you need to find ways to cope with it best you can.

Diet:

Try to eat a nutrient dense diet and drink plenty of water to keep your sensitive brain happy. Avoid caffeine, alcohol and stimulants as they have a tendency to poke the snow globe and ramp up the anxiety. There are so many diets, it’s so individual, you really have to find what works for you as we are all so different. I had a plant based diet and avoided dairy, gluten, processed foods and sugars. I noticed a big difference in my anxiety and my sleep if I had sugar or dairy. I think it’s trial and error what works for you – jot it all down in your symptoms diary and patterns will emerge. The thought of meat or fish made me feel physically sick. I believe that it was my bodies way of telling me that I needed a more easily digestible diet to give my GI tract a break so it could focus on healing my brain. A simplistic and perhaps unscientific view, but none the less that’s how I felt about it.

Distraction is key:

Do what ever you can to distract yourself. At my worst all I could do was to take deep breaths to just get through that hour, not thinking any further ahead than that. On advice from the Bristol Tranquiliser project I found that the body scan (a progressive relaxation technique) is good to run through to try and relax your mind. Stress definitely made everything a thousand times worse –  I may as well have launched the snow globe across the room. So do anything that your body allows you, within the limits of your symptoms, to relax. So, that may be simple but effective breathwork and meditation, yoga or trying to lose yourself in a hobby or a gentle walk. I found watercolour painting very therapeutic. I could lose myself for hours and I feel it just gave my brain a break from worrying about what was happening to me. Find something creative to lose yourself in for a bit. I also found the Wim Hof breathing method and ice baths (on days I felt up to it) very helpful. I found the ice baths really calmed down my nervous system and eased any anxiety. It sounds totally counter intuitive but trust me, it works.

One final tip:

Step away from the internet! Stop torturing yourself Googling and comparing to others – your journey is your own. I used to go on forums and compare my stage of withdrawal with others and get so jealous that some people seemed to be able to carry on as normal. I would also stress myself out about symptoms that I never even experienced. Although it can be initially helpful to realise that others are going through something similar, I think ultimately it stressed me out more than it helped me in the end. Remember that most of the really opinionated people in these forums are not medically qualified and what they are saying may not be true for everyone. Accept that the only control you have over what’s to come is how you react to it. If you live in absolute terror of what seems like the 2,934,592 random symptoms that could happen, chances are that some of them will appear. You have to learn to switch off and accept that this is your path for now. That things will get better in time and you CAN reclaim your life free of these evil drugs one day. Every day is a step closer to that.

I think most people have an idea of what drug withdrawal looks like; potentially a weekend chained to the radiator shaking, sweating and chugging Gatorade if you go by most TV’s portrayal. If only it was that easy. The cruel thing about benzodiazepine withdrawal is that it can take months, if not years to get through and going cold turkey (or just too quickly) can be really dangerous.

Eventually I got down to 2mg of Diazepam and at this point life was absolutely unbearable. It’s almost beyond words how bad things got but I will try to explain best I can. My neuro sensitivity was through the roof. I was so sound sensitive that I was confined to bed with ear plugs in and ear defenders on and still struggling – bin day was dreadful. Any sound was completely excruciating and would leave my ears screeching with tinnitus and I’d feel like my head was going to explode. I couldn’t run a tap, eat solid food, listen to music, hell, I couldn’t even speak. My mum had to move in with me and it was like living on the set of A Quiet Place. No shoes, no speaking, phones off, doorbell unplugged, plastic utensils and towels on every single surface to dampen the sound. I couldn’t even have hot water as just the hum of the boiler would leave me practically rocking in the corner of the room. I would communicate via pen on paper and even the sound of the pen scratching the paper would be too much. I could not step foot outside the house. I was so sound sensitive any noise was totally debilitating and confusing as I could not identify what it was or where it was coming from. A bee flying past sounded exactly the same as a drill being used a few houses down. Superman must have felt absolutely fooked!

Now, add to that light sensitivity, I lived in my sunglasses and ear protectors – quite a fetching combo. I couldn’t focus on anything, so that made communication rather difficult as I was communicating via Sharpie pen. I learnt British Sign Language years ago but it wasn’t that useful when nobody else knows it, besides I could only remember ‘Liverpool’, ‘Lesbian’ and half the alphabet – not that helpful!  We’d try and play cards to pass the time but after a couple of rounds my eyes would roll into the back of my head and my eyes would twitch rapidly under my eyeballs. The only thing I could do was to lay in a dark room with zero stimulation. I couldn’t use my phone or read. My mum would reply to my text messages for me as people were starting to get concerned as I’d just dropped off the planet, even more so than usual. That’s no sound and no vision. See how slow your day drags when you can’t rely on any of your senses. It’s painfully S.L.O.W!

My mouth became so sensitive my mum made me soup, I couldn’t have anything with any crunch at all, and I accused her of filling it with chilli’s. Everything from that point tasted like the hottest chilli. Strawberries were particularly bad, my mouth would be on fire for hours after. So I had to have totally tasteless, cold, liquid food with plastic spoons as the sound of cutlery was simply awful- hello custard diet.

It got worse. The auditory hallucinations became simply horrific. It would sound like a line from an orchestra, probably about three seconds of it, very loud on repeat. All the instruments rocking out and going crazy. Variations of the same acoustic tune for three seconds on repeat for months and months on end. I still have it now, six months free of the drug, but it is much much quieter and far less intrusive. It was absolute hell. On top of that I would hear sounds that weren’t there. For example I would hear the whirr of he microwave going when it wasn’t even plugged in, but it wouldn’t stop, continuing on in my head until my frazzled brain latched onto another sound. I would hear children giggling in the middle of the night – that was a creepy one. It was like my brain recorded random sounds during the day and played them back to me on repeat. I had to have someone with me at all times as I had no idea what was real and what was not. Just writing now this brings me out in a cold sweat. I would not go through that again for all the money in the world.

If I had too much stimulation, and I’m talking hardly anything as I was in a dark, soundless room for months, my brain would ‘flip out’ – perhaps not the right medical terminology. It’s hard to describe but it was like I lost control of my mind. It would feel like I was falling through random thoughts not stopping on one long enough to work out what it was. It was like flicking through the channels on the tv so quickly that you get a glimpse, but not quite enough to ascertain what it even was. I had this same sensation when I had my initial seizures. It was frightening and it would come on out of the blue and could last hours. All I could do was stay still in my dark room and take deep breaths until it passed. I swear if I hadn’t had already explored so much meditation and the Wim Hof method I would have had to have been sedated to just cope. This would never have helped the withdrawal and I’d probably be medicated up to the eyeballs and locked up somewhere to this day.

It would have been great if I could have distracted myself with a film, or music or a chat but that wasn’t possible. I was in my own private and very isolated hell. I still could not sleep because of the insomnia and then add trying to sleep when you have a jazz band going off in your head on repeat – impossible. When I did finally sleep I would have night terrors. I’d wake up soaked through and shaking for hours, questioning what was real or not, embarrassed that my subconscious could imagine something so violent. My anxiety, understandably, was through the roof. It’s not something I have ever had trouble with before withdrawal. If someone did not get back to me immediately via text I’d pretty much assume they’d died in a horrific accident. I just could not cope with anything.

To be quite frank I pretty much wanted to die most days. No correct that, I didn’t want to die, I just could not live like that for another second, it was pure torture. I just needed a break from the relentless symptoms – I was desperate and terrified of things getting even worse. The symptoms were so bizarre I really never knew what would pop up next, anything goes. I lived in a state of constant terror. What do you have when you can’t rely on any of your senses and you’re plagued with endless hallucinations? When do you say enough is enough? It was that bad.

The Bristol Tranquiliser Project were wonderful. My poor GP was totally out of his depth and wanted me to see a Psychiatrist because he was still on the,  ‘this doesn’t happen with benzos as there’re safe’, train. The charity helped my GP and my family thorough it all. They explained that all my symptoms that I was having, although shocking, were completely normal. Read that again. TOTALLY NORMAL. The Bristol Tranquiliser Project are on the phone to people like me all day long. It’s unbelievable. How does nobody seem to be aware of how bad these drugs can be if this hell is considered normal?

Not only was it shocking that this horror show of symptoms (and I’m just explaining the predominant ones) was just normal, this can last for up to two years AFTER getting off of the evil stuff. I hadn’t even got off it yet. It wasn’t a case of getting through each day, it was about surviving the hour. My poor mum and dad really stepped up to the plate and did absolutely everything within their power to help me. I know it was horrendous for them to watch me suffer for so long and not be able to do anything about it but wait it out with me.

We knew there was no point paying large amounts of money and packing me off to a detox centre. These centres advertise the freedom from these drugs sometimes in as little as two weeks. To someone trying to get free of them this sounds like absolute heaven and too good to be true – that’s because it is. Yes, they can get you off Diazepam in two weeks but Diazepam has such a long half life the withdrawal symptoms may not even start to hit you until you’ve packed your bags, said your goodbyes and left the facility. Just imagine that, paying vast amounts of money for ‘expert’ help and they haven’t even helped you with the withdrawal, just put you in it, anyone can do that. I can only imagine how fun that rapid withdrawal is after the problems I encountered over months and months. I’ve heard many horror stories about these facilities.

And the worst part of all of it? If I’d got the right help in the first place (it wasn’t for lack of trying) all of this could likely have been avoided. My taper speed was simply too fast for me.  It’s awful that I went through days of seriously contemplating ending my life (and a lot of people sadly do act on those desperate thoughts) over something that could be totally avoided if only it was educated properly and people were more aware of the dangers. Hence me harping on about it on my blog and social media. Despite the dangers of these drugs becoming more and more apparent the amount prescribed is still rising year on year. There has been a 29% increase in Diazepam prescriptions over the last 12 years. This has to change.

If anyone is UK based and searching for help with withdrawal from benzodiazepines or antidepressants I highly suggest the Bristol Tranquilizer Project (they’re NHS): Bristol Tranquilliser Project – Home (btpinfo.org.uk)

By March 2020 Covid hit and with it came the lockdown. This meant that the drug and alcohol service could not see anyone in person for the foreseeable future. The powers that be decided that it wasn’t safe for patients to drop doses of medications as they could not offer any in person support. Everyone was put on a drug reduction pause. Little did they know that the thought of not going in every two weeks to that soulless, depressing place to pee in a cup and to be told everything I was experiencing was just in my head was the best news I’d heard in ages. Thank you Boris!

I know that the drug and alcohol service is very underfunded and does have strengths in other areas, but withdrawal from benzodiazepines was clearly not one of them. I really felt I could have crawled in on my hands and knees wrapped up in tinfoil, declaring that I was the rightful Queen of Scotland and they would have just written it down in my file, told me to ‘just get on with’ it as ‘Diazepam is safe to come off of (it isn’t)- see you in two weeks, bye’. It actually tickles me that they truly felt I was losing my support when they closed, I just felt pure bloody relief.

Just in case you haven’t picked up on it I found the drug and alcohol service no support whatsoever. They just increased my anxiety as my valid concerns were always dismissed as nothing and they forced me into strictly timetabled drug reductions I knew were not right for me. In fact they’re not right for anyone as you never know how you will react to a reduction until you actually do it and withdrawal symptoms can take days, even weeks to kick in. I now had to go to the pharmacy every few days as they put me on an addict’s prescription despite how hard it was for me to get there because of my symptoms. My pharmacist was puzzled as he’d prescribed me buckets of the stuff for years and now that I had asked for help to stop I was being rationed despite never abusing it – I was puzzled too!

I later found out (by mistake) that they actually very rarely dealt with benzodiazepines (not a shocker), but none the less still felt more than qualified to advise me. My GP could not help me as he would not go against the advice of the ‘experts’ and didn’t understand it, like so many doctors – it’s simply not taught. He was forced to follow the advice of the ‘experts’ that I’m not entirely sure had even done it before. Their badges should have read ‘some drugs and alcohol service’ and if we haven’t come across that drug we’ll just wing it. The battles I had with them were relentless. I was once told over the phone that the dose I was on was hardly anything (5mg at this point) and I could just stop it as the symptoms are only psychological so I’d be fine. This is terrible, terrible advice. 5mg is still a huge amount of Diazepam and it should never be just stopped, especially if you have a history of seizures. The symptoms are most certainly not ‘just’ psychological and they’re accompanied by numerous totally debilitating and frightening physical symptoms (especially when you taper too fast). It was terrible and I very selfishly would have been happy for lockdown to stay around forever if it meant I never had to go back there again.

I started to feel a bit better as I was able to stay on the same dose for a few weeks. This is how benzodiazepine withdrawal should go. Go at a rate that suits you. It shouldn’t have taken a global pandemic to allow me to do this. However, it was on my mind that at any point the clinic could decide that I needed to drop a dose again so I planned to get ahead of the curve. They were forcing me to go at 1mg every two weeks. With the help of Google I devised a plan of going 0.25mg every couple of weeks which seemed much more sensible. It literally felt like a race against the pandemic. I needed to be off the Diazepam at my slower (it was still too fast) rate before I was forced to go at the much faster rate. Where others were counting down the days until lockdown ended, I was desperately trying to achieve what I needed to get done, before I was forced to do something that I knew in my gut, would not end well for me.

A big problem (another one) with coming off benzodiazepines is the tiny tablets that only come in big doses. This meant that the only way I could get a small enough increment was to dissolve a tablet in alcohol and tip a fraction of it away. It was very complicated, not very accurate and basically just DON’T DO IT THIS WAY! A benzobrain can be so sensitive even a couple of mls of vodka is just not a good idea. Some people use jewellers scales to try and measure such tiny tiny bits of benzo – it is not easy, especially when you’re going through withdrawal at the same time.  I carried on in this manner for a few weeks thinking I was doing great. Occasionally the clinic would call me to check in and I’d just lie and say I was staying at the same dose that they were prescribing. I wasn’t proud of the deception but what choice did I have? I either waited until I was forced to drop the dose dangerously fast by them, or lied to try and do it in a slower, what I thought was a safer manner. Needs must when the Devil drives and benzo withdrawal is one hell of a ride.

After a few weeks I noticed that my neighbours were playing their music too loud and when my mum visited she just wouldn’t shut up or use an ‘inside voice’ like…ever. What I didn’t realise that this was the start of the neuro sensitivity and it was to get much worse. I think it was a normal reaction to think everyone around you is loud and inconsiderate rather than realise that it’s your brain that just can’t cope with anything. That it wasn’t in fact the neighbours playing random music at all hours but the start of my auditory hallucinations.

My sleep, well you can’t call it sleep, got worse and worse.  I actually got to the point where I was lucky to get 20 mins at about 10.30am and I thought that I was going to lose my mind completely. People would tell me that ‘you fall asleep and kind of drift off’ and its ‘perceived sleep loss’ as people can’t live that long without sleep. Anyone who has been through intense withdrawal will join me in a big eye roll to that statement. I’m pretty sure you can’t fall asleep and not realise it when you’re literally pacing around the house all throughout the night. I’d also get the advice to do more and not nap. Another eye roll to that. You can’t nap it’s like you’re totally exhausted you can hardly think straight but you’re on high alert, totally wired. Could you take a leisurely ‘nap’ with a psychotic killer screaming that they’re going to skin you alive, chop you into pieces and eat you as soon as they manage to break the door down? No, didn’t think so. That’s what it feels like. Yes it turned out, my ‘safe way’ that I researched online wasn’t working either – imagine that, shock horror!

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…

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

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.

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.

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!

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.

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!