Chronic Illness Hierarchy of Needs

You may have heard of Maslow’s hierarchy of needs. It’s a snazzy, often brightly coloured pyramid diagram showing how the needs or motivations of humans are set as levels of importance. It wouldn’t look out of place if it was scribbled on a large paper flipchart by someone wearing a badly fitting suit in a conference centre in Staines.

I can’t really be arsed to look into the history of it or whether or not it was created by a suited bloke wearing too much aftershave, but I assume it was this Maslow guy that made it, and that Maslow wasn’t just the name of his dog who he decided to name it after.

Classic
So there it is in all it’s rainbow gay glory.

You’re probably wondering what my point is, well here it is, hold onto the edge of your seat… chronic illness also has a hierarchy of needs. I thought if this Maslow guy can make one, then so can I. So here’s my slightly less colourful version I just scribbled out with a Biro and a marker pen. *mmm marker pen fumes*

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I don’t know if you can read my scrawl (You can click for a larger version though), so just in case I’ll type it out as well. Basically, when you’re really damn sick you have very basic needs that you’re trying to achieve. Here I’ve listed them as Not suffering so much you want to die; Not being in horrendous pain; Toiletting and washing yourself.

Then when you’re at the point where you’re a bit more well your attentions focus to Safety. – Not being constantly scared of hospitalisation or what will happen to loved ones if you pop your clogs. 

Then if you improve a bit more again, congratulations you get to the next level on the pyramid ; Social. – Having friends that don’t think you’re a nutjob. Occasionally seeing those friends.

If you then get to the next level then give yourself a massive pat on the back because you’re on Esteem. Being proud of yourself for progress made and not giving up. Feeling a sense of achievement of getting better and helping other diseased people. 

Now the top level is a bit hippy dippy airy fairy and called Self Actualisation. I have no smegging idea what that actually means, so I’ve taken it to mean Learning stuff from your experiences (of being horrifically sick) and finding meaning from it. Also reclaiming your  hobbies or finding new ones. Perhaps finding a new direction in life. 

So the pyramid is a bit  like stages of getting better, or stages of getting your life back.

I’m extremely lucky because I’ve moved all the way from the bottom where I counted it as a good day if I didn’t want to throw up or could stagger 4 steps to the sofa,, all the way to the top where I’m looking back and thinking What the fuck was that all about then?! I’m getting better, I still have a way to go, but my body doesn’t require every ounce of my energy to keep myself from keeling over. There’s energy left over for me to see my friends, have some non energetic hobbies and actually emotionally process what I’ve been through. I’m at this weird stage where I’m trying to find meaning and make something good out of all the crap. My basic needs are met, so I’m in a luxury position of trying to fill the less basic needs.

For people that have never been at the bottom of the pyramid, (either pyramid!) it must all seem very strange, but for the people who have been there and have managed to climb up, it really makes you realise how lucky you are and fills you with gratitude that you can entertain existential musings or fashion dilemmas.

Posted in chronic fatigue syndrome, chronic illness, Lyme Disease, ME, Myalgic encephalomyelitis, progress | Tagged , , , , , | 5 Comments

Pushing too Far & Barry

Everyone’s healing journey is at a certain point, some people are further ahead of you and some behind, some go at snails pace and some go as fast as England’s time in the World Cup. People ahead of me all said the same thing, when you start feeling better you have a tendency to push it too far too fast and over do it, and then crash back down again. But that won’t be me, I thought! I’m in tune with my body, I’m a good listener! I listen to my body!

Funnily enough, that’s not exactly how it’s panned out. My partner had 2 weeks off work, the weather was glorious and we had lots of fun plans to make the most of my improving health. It all started wonderfully, we went to see partner’s family for a few days, we went to the beach and I climbed up massive sand dunes and leaped about like a demented dog seeing sand for the first time. We saw several friends, then with only 1 rest day in between, we flew to my mum’s place in France where I again pushed it and walked around like a normal person, going to markets, cathedrals, the lake, museums and the like.

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Showing off really…

You can see what’s coming can’t you. Towards the end of the trip to France the warning signs started creeping in. I’d felt quite stressed from the visit and hadn’t been sleeping well. It was the perfect storm and my throat was getting progressively more sore, which is always a sign that my immune system is struggling. I went to bed early but it was too little too late really. I limped through the rest of it, including the flight back and hoped I’d get away with just a quiet few days to recover.

I woke up the next morning with a new white lump of pus on my good tonsil as well as a horrifically sore lump of unknown origin in my lady parts. Now this is where it’s going to get a bit personal, so you might want to look away if you don’t want to hear this sort of thing. I however, have absolutely no shame. When God was handing out the shame and embarrassment, I was busy doing naked cartwheels somewhere else.

The tonsillitis was expected, I’ve had it chronically for 2.5 years and it flares every few months when I over do it. I was expecting it to turn up and so wasn’t much of a shock. What was a shock however, was having this lump that was so incredibly sore I could barely move my lower half, nevermind walk. So sore that the tonsillitis paled in comparison.I walked to the bathroom like a penguin combined with a cowboy who’d had a week long orgy, but not with penguins, cos that would be weird.

I did what anyone would do and got the mirror out and had a good poke around. Yup, there it was, an ominous looking lump. Now this is where it psychologically gets interesting. Most normal people automatically think of the worst thing it could be, so most normal people would think, oh crap, I hope it’s not cancer. My first thought was, OH MY GOD I’VE GOT GENITAL HERPES. Because in my world of the chronically ill and immuno-compromised, the worst thing is a chronic viral infection, especially one that’s going to cause immensely sore blisters in your nether regions that you’re going to have to show multiple doctors who know absolutely nothing about Lyme’s immuno-suppressive abilities and not have a clue what you’re talking about. What’s worse than having a bunch of strangers poking around your bits? Strangers who don’t understand any of the underlying illnesses and can’t do anything to help you, so as usual, you’re on your own with yet another chronic infectious disease.

I haven’t been romping with any STI riddled people, nor have I been wearing polyester chaffing underwear or anything else that could explain it. So I did some research and although the timing fitted in with a viral flare, the type and location didn’t match with my known strains of viruses. I did some more digging and the people of Mumsnet were talking about boils and localised bacterial infections causing this kind of lump. Given the appearance of it, the jury was still out on whether it was viral or bacterial, so I covered all bases and took all my temporary immune stimulating things, vitamins, anti virals etc. I also found that taking Lysine regularly really helps with keeping viral infections at bay, so that’s one to store in the memory bank.

Then a friend of mine who shall remain nameless, told me her horror story of when she was immuno suppressed, a small innocent looking lump like mine spread the infection everywhere and her bits ended up looking like roadkill, ROADKILL. *crosses legs* The infection even went down to her knees, and then of course the bacterial infection gave way to a fungal one (as it often does with anti biotics) and she sat with an ice pack on her fanny for two weeks.

Now if this isn’t enough to scare the beejesus out of all women-folk everywhere I don’t know what is. Well, apart from when you grow a giant parasite in your belly and then it rips it’s way out of you. That’s also pretty horrific, but at least you get a tiny human to fetch you the remote control and later make you cups of tea.

As you can imagine, I’ve been checking the status of my labia more frequently than Justin Bieber checks his hair. It’s a lot less sore today which means one of two things. 1. whatever the infection is, my body is successfully fighting, or 2. The infection is spreading and I’ll soon have Godzilla bits.

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Before I got sick stuff like this didn’t phase me, most of the time things simply ‘sorted themselves out’ which is what is meant to happen with a fully functioning immune system. But since I’ve got sick, most of the time things don’t sort themselves out, in fact they just get worse and become a whole long chronic saga. So I thought I’d start now and call the lump Barry. So this is the Barry Saga, which is a convenient codename enabling me to continue talking about my personal issues in public. E.g I could be standing in Aldi with my partner and have to shift positions a bit and when given a quizzical look by partner I would say, ‘Barry’s playing up’.

So anyway, let this be a lesson to everyone who’s behind me on the healing journey. If you push it too much you may end up with opportunistic infections taking over and you might even get roadkill bits.

The good bit? It’s frickin amazing having days where you can do nearly all the things you want to do, and feel well enough to enjoy it. Words can’t explain how amazing it is to feel normal when you’ve experienced the depths of hell being bedridden.

So I may be in bed for a few days through my own fault now, but as long as Barry behaves, I’m sure I’ll bounce back. I feel very very lucky.

Posted in chronic fatigue syndrome, chronic illness, Lyme Disease, ME, Strep throat, Tonsillitis | 5 Comments

‘But you don’t look sick’

We’ve all heard this phrase, and it’s a particular bug bear of the invisibly chronically ill. So what does ‘sick’ actually look like?

You can be obviously physically disabled, e.g having a missing limb, but you’re not ‘sick’ as in unwell and you can still function pretty well in everyday life, albeit with a few adaptations. The Paralympics showed just what physically disabled people are capable of, I didn’t see anyone with M.E//CFS/Fibromyalgia compete though, and there’s a reason for that.

So how else can you look sick? Not having any hair? Plenty of people have alopecia and have no hair and they’re not sick.

Celebrities with full on flu still go on chat shows, dosed up with flu meds and once they have their hair and make up done, they look the picture of health, even when they feel like death. They don’t look sick either.

Sometimes people rely on visual clues, if you’re in a wheelchair or on a mobility scooter then you look sick. Except you’re looking the same off it as you do on it, how can you look sick while sitting on it but not sick when sitting in a normal chair?

What about weight loss and gain? These can both be a sign of horrible illnesses, yet if you lose a load of weight, instead of being told you look sick, you’re told you’re looking fantastic because you’re fitting into societal’s ideals of what beauty is.

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According to statistics, 96% of illnesses are invisible. So who does look sick? The only examples I can think of are characters in film and TV who have had make up applied to make them look sick. I propose that the whole notion of looking sick has actually come from a fictional idea of what sick looks like.

I think this fictional portrayal of sickness is actually distorting people’s idea of what sickness looks like, and as a result they miss the subtleties of real people with real illnesses. When I was sick, people commented that I didn’t look sick. But now I’m starting to do better, they tell me how much better I’m looking. So logically, they can’t both be correct. Even if you discount the people who are saying I look better who are purely saying it to be polite, there are still a sizeable amount of people who do genuinely think I’m looking better. So surely that means I did look sick before?

My mum and partner both say I looked sick before, they could tell how I was feeling by looking at me, but no one else could. Other people who don’t see you day in day out rely on obvious visual markers of sickness to make a judgement. The problem is, those markers aren’t usually the whole story.

Lets play a game. I’ll post a load of pictures, and you have to guess which are the ones where I was feeling really sick, and which are the ones where I was feeling quite good/less sick.
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Answer: I was just as sick in both pics. On the one on the left I’d been in bed all day resting so that I could go to see family in the evening and sit on their sofa instead. It was Christmas so I dressed up. I had excruciating crushing chest pains frequently around this time and would break out into a sweat for no apparent reason. I couldn’t walk more than a few metres and I was on 30 odd pills a day. This is what they mean by ‘People with lLyme disease can feel as bad as those with congestive heart failure’. On the right I was essentially the same, but instead of crushing chest pains I’d had constant migraines for about a week.

Next question. In which picture was I well and which was I unwell?

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Answer: The one on the left was before I got sick, I was perfectly well. I’d been on a 10 mile bike ride the day before. I only look like that because I was in a bad mood as it was a bit colder and windier than I would’ve liked. The one on the right was taken a few months ago, I was better than I used to be but still sick. I couldn’t walk that far but was ridiculously happy to be able to walk at all and be able to enjoy being out of the house. Says it all really.

Ok last test. Would you assume one of these people is more physically capable than the other at this moment in time? Which looks more ‘sick’?

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The right one looks more sick right? On the right I’m in a wheelchair. On the left I look normal, in fact I’m at the top of a mountain, sick people don’t go to the tops of mountains, right? Wrong. These were taken in the same month last year. On the left we were on holiday in Wales, we went camping so that we could drive everywhere and I could spend the whole day laying down if I needed to. We parked as near to things as we could so there was less far to walk, on this day we parked right outside the mountain railway station and got the train up the mountain, took some pics when we were there and went back again to the car. On the right we were in Germany to see a doctor, without the car, and therefore reliant on public transport, I couldn’t walk that far and deal with it all physically so we took the wheelchair. I was at the same level of illness in both.

Moral of the story? Your idea of what sick looks like is a load of rubbish. You can’t tell what someone is going through physically or mentally by looking at them. Often, if at all, the only people who can see any clue at all are very close family members, and even then, they only get a tiny snippet of the full horror of what you feel.

However well meaning, saying ‘you don’t look sick’ is basically negating someone’s suffering. It’s saying, you don’t look like how you say you feel, which is only a smidge away from saying you don’t believe them when they say they feel a certain way. It’s only another smidge away again from all the doctors they’ve had to battle who have said there’s nothing wrong with them. Yes, they may be a little over sensitive to it, but can you blame them? They’re feeling like they’ve got the worst flu, day in, day out, they’ve got little to no medical help for these invisible, controversial diseases, and have had horrifically bad experiences with not being believed before. Now you come along, a friend who they trust, saying something not only technically a load of rubbish, but painfully close to the bone.

It’s just words, but words can hurt.

If you want to say something nice about a sick person’s appearance, how about saying ‘hey, you’re looking good today!’ instead?

Posted in CFS, chronic fatigue syndrome, chronic illness, Lyme Disease, ME, Myalgic encephalomyelitis | Tagged , , , , | 11 Comments

Babesia herxing hell

Sitting under a tree in a local park in the pouring rain, crying behind my sunglasses. This is when I realised what was happening. In one short word the explanation can quickly be defined as ‘babesia’. Lymie lifers will now know exactly what I’m talking about, for everyone else, I’ll start at the beginning.

My doc warned me about babesia treatment. She’s the first one to actually recognise that I have babesia at all, and also agrees it’s my biggest issue. I wasn’t that worried though, I’m a fairly good detoxer (I have my genetic results back, but that’s a whole other post) and usually fool hardily increase the doses of meds, whizzing up to the top dose like some kind of pill popping lymie super hero in green spandex. Mmmm sweaty.

When I told my doc about my gung ho approach to meds, she did that ‘Hmm’ thing that Marge Simpson does when she knows it’ll all end in tears. I wasn’t perturbed though. I’ll be careful, but I’m not hanging around for the sake of caution, I want to beat this thing and I want to do it NOW! After all, on my non LLMD ex doctor’s instruction, I went straight in at 400mg doxy at the beginning and had a horrific dangerous herx, and hey look, I’m still alive! It’ll all be fiiine.

It’s not been fine.

It started off fine, sure. Apart from the really weird reaction of pus seeping it’s way out of me any way it could. Yup, you read that right. My tonsil errupted suddenly one night, lumps of pus came out, and then once the gaping hole healed up, it felt LOADS better. Then my chest errupted with pus. Few days later it cleared up, and again I felt better.  I felt like I had more energy, in fact, I was a bit hyper. I went to the London Lyme Protest and was a bit overexcited and didn’t shut up for the entire 3 hours I was there. I probably could’ve climbed the walls if I’d wanted to, I was that excited. Maybe my green spandex would’ve also come in handy at that point. I should’ve realised something was brewing, but I just thought I had more energy and was happy to be feeling a lot better and really happy to be at the protest. I beamed and everyone said how happy and healthy I looked. YEEHA I thought, I’ve got this lyme thing daaaaan. (That’s my London accent for ‘down’).

 

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Me with a lovely guy called John who looks a bit scared of me.

A few days later I  had a Skype appointment scheduled with my doc. It went horribly disastrously wrong. One thing after another failed and I ended up not actually having the appointment at all. It turned out the issue lay firmly with my internet upload speed. The download is fine and so apparently this is a tricky problem to solve. I couldn’t cope. I felt embarrassed at screwing my appointment up, disappointed I didn’t get to have it, and completely overwhelmed at the prospect of finding solutions to the issue. It felt like the absolute end of the world. I didn’t know what to do with myself, so in my infinite wisdom (!) I decided the best course of action was to block it all out with a bottle of Aldi’s £3.99 wine. You can tell this isn’t going to end well, can’t you.

That night I went to bed still feeling distraught, completely out of control emotionally and also quite drunk. I squirted some of by babesia herbal meds into some water, but without actually counting the drops. In hindsight I probably had quite a bit more than the level I’d been on. When I woke up the same happened again, due to a combination of being off my head with what I now know is babs herxing, post-sleeping-daze and a hangover, I decided that I needed to take my babs meds as soon as I woke up and again squirted a random amount into some water.

And that’s where things really went wrong. I was bad tempered all day. I was freaking out about the internet issue, about the washing up, about the bins not having been put out at the correct time, about anything. I burst into tears over everything and ended up huffing off the the park, when my partner asked me where I was going I replied with ‘OUT’ in cringingly teenager-ish way.

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I often use photography as a means to express how I feel. So I took some pictures while in the park. This is crazy runner #2

I sat under a tree in the pouring rain, crying behind my sunglasses at everything and nothing. I watched other people in the park and wondered what their stories were, what their issues were. There were several runners doing laps of the park, even in the rain. I pondered who was more crazy, me with my mood swings, hallucinations and anxiety or them for running miles in the rain for the sheer hell of it. I decided it was them, they were more crazy. At least I have an excuse of various infections in my brain  making me crazy… wait a minute. And that’s when it hit me, this was a babesia herx. D’OH!

After 20 months of Lyme treatment, I STILL don’t recognise a psychological herx until after I’m through the worst of it. I’ve had so many, but the issue is that they’re all subtly different, depending on which infection is being battered and by what drug.

I skipped my dose that night and gradually felt more normal again. Suddenly I could see outside of my own issues and saw other people properly for the first time in days… I suddenly felt incredibly ashamed at my over dramatisation. There are people out there who are still bedridden, still needing to be physically fed and are having their doctors say they’re faking the whole thing and threatening to take their social care packages away. There are others whose hearts are so damaged by lyme and co they could die at any second and still the NHS won’t help them. Every week it seems someone in the UK lyme community is admitted to hospital fighting for their lives, but Lyme is still completely denied with no other explanation to their illness given.

And here I was yesterday, completely freaking out because there was something minor wrong with with the internet…

Babesia treatment is hellish. It makes you feel emotionally out of control, nevermind the physical stuff like the increased muscle pain, headaches and air hunger. But it sure beats the alternative. I’m the lucky one, crying in the rain or otherwise.

Posted in Babesia, herxing, Lyme Disease | 9 Comments

Lyme disease awareness

A lot of diseases have this ‘awareness’ thing going on. It seems to mean different thing for different diseases, no one needs to be told what cancer is, or what asthma is. So it’s not really trying to raise ‘awareness’, it’s more trying to raise support for associated causes.

Lyme disease awareness however really is about awareness. In the UK especially, no one really knows what Lyme is, and they definitely don’t know how disabling and life changing it can be. Even the medical profession is woefully ignorant on the wide range of presentations, the innacuracies of tests, the methods of transmission, complicating factors, resulting diseases, complex treatment protocols and long term outcomes.

I read on lymedisease.org recently that a study has found that Lyme disease can be as disabling as congestive heart failure and you can feel as AIDS patients do when they’re 2 months from death. Except Lyme is rarely fatal, instead you live in this constant state of near death hellish nightmare you can’t wake up from.

Because of this very real lack of awareness, friends and family are often not that supportive. They just don’t understand why you don’t get better, or why the doctors don’t know what to do with you. They don’t understand why you need to fundraise for private medical treatment, they don’t understand how you can look fine but feel like you’re at deaths door. They don’t understand how your whole life can be taken over by this.

This is what we’re campaigning for when we talk about Lyme disease awareness. When I’m hobbling around with a stick or on a mobility scooter, when people ask me what’s wrong with me and I say Lyme disease, I want them to know that this means I’m going through some of the worst years of my life, that I’m fighting to have a future, that every day is a struggle and that I’m physically, mentally and financially exhausted. It really would be very appreciated to have that acknowledged.

I’m 30 this year. It’s a big deal because I have nothing to show for my entire adult life. I lost everything when I got sick, and I don’t know when I’m going to be able to start building a life again. This isn’t unusual in the Lyme community, we’re grieving our old lives and we’re scared for the future. We’re scared we won’t be able to get back into the work place, or ever get married or start a family, we’re scared we may have passed this awful disease onto the children we already have, we’re scared of the next time we need emergency medical care that we’ll be treated badly or ignored because we have Lyme disease on our notes. We’re scared we may never experience life without pain and fear ever again.

We want people to be aware of what it’s like to go through 10, 20 or 30 doctors and one by one they tell you that you’re crazy, making it all up, or that they simply don’t know what’s wrong with you and can’t help. We want people to be aware of how much strength and courage it takes to say ‘I think I have Lyme’ when everyone else says you can’t possibly. To go against doctor’s advice and get your own testing done, to find the money to get treated out of pocket. To go through horrendous reactions to medications that make you even worse, just so that you have a chance of improving. After all that, we want people to be aware that we live under a constant fear that the one doctor we found that COULD help us, may be investigated and have their licence removed for not following flawed, biased guidelines.

Most of all, we want people to be aware that there is hope. Even if you’ve gone undiagnosed for 40 years, or if you’re bedridden and unable to feed yourself, there is always hope. People DO get better if they can get the right treatment. This is a preventable and treatable disease that is usually misdiagnosed, ignored and maligned. With education on how Lyme and co infections can be contracted, ways to prevent infection and to catch infection early, it doesn’t have to be like this. We don’t have to have thousands of newly infected people year on year, most of which are never properly diagnosed or treated and go on to spend the rest of their lives suffering. It doesn’t have to be like this.

We’re not trying to raise funds to supplement what the NHS already treats, as usually the NHS doesn’t treat sufficiently. We could never hope to achieve enough funds to adequately treat everyone. We’re not trying to fund research, again we could never hope to raise enough. Why? Because no one’s heard of Lyme disease, no one cares about Lyme disease. There aren’t ‘Race for Life’ events for Lyme disease, there aren’t people picking Lyme charities for celebrity game shows. Hell, there aren’t even many Lyme charities! 2 out of 3 of the UK and Irish ones have recently closed due to lack of funds. Why? Because there’s no Lyme awareness.

We need people to know what Lyme is, what Lyme does and that we desperately, desperately need support and understanding.

This is Lyme disease awareness, this is what we want people to be aware of.

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Posted in Lyme Disease | Tagged , | 13 Comments

The Tonsil Diaries – part 2

The human I am forced to reside in seems to be taking action. I have never had so many people stare at me and my twin before, a deformed tonsil like me could get used to this kind of attention. I expect to be in magazines soon, maybe even get an invite to an awards ceremony.

As my narcissistic tonsil says, I’ve been on a bit of a mission lately. Since I last wrote things went from bad to worse and I found the limit to my patience. It was at the bottom of a very deep well, along with my dignity and pride. My vet friend said she’d take them out tomorrow if I was a dog. Er, woof? :D

I went to see my GP, who’s friendly enough but not particularly helpful. She said it didn’t count as full blown tonsillitis and I’d need 8 well documented cases of acute tonsillitis before the NHS would even consider removing them. The NHS have no concept of chronic infection, Lyme or otherwise, so this was hardly surprising. She offered a prescription for a 7 day course of penicillin, because obviously this, my 9th short course of anti biotics for my throat will clear it where the other 8 failed. Not to mention the IV anti biotics and the 9 or so months of other oral anti biotics I’ve had.

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I’m now onto plan B. I’m trying to fix my tonsils myself with the help of my LLMD who understands them better than the ENT pleb I saw in 2012. It says something doesn’t it, when a hippy naturopathic doctor is better at treating various things than the consultant specialists. She’s totally ace though. I’ve started prefixing her name with ‘Hero’ instead of doctor. I’m slightly worried I’m going to do that gushing star struck thing with her at my next phone consult. That horribly embarrassing OMG YOU’RE SO AMAZING THANK YOU THANK YOU THANK YOU thing. It’s just not cool, is it? But that’s what I feel like doing, for how she’s helped my gut if nothing else. She’s done more for my gut than all of my previous doctors put together. I think if I stick at her recommendations she’ll be able to sort my tonsils out too. And that’s even before we’ve got to the tick borne infections which is what she’s really good at.

However, sticking at recommendations isn’t exactly my strong point. I’m really not very good at doing as I’m told. I always think I know best and that the instructions are more of a ‘guideline’. It was pretty much set in stone from the time when I was 2 or 3 and my mum told me not to go into the cupboard where all the cleaning stuff was kept. As soon as her back was turned I was in there chugging down the first bottle I found. Luckily my mum knew me by that point and put a bottle of vinegar at the front, so I would choose that rather than bleach. I didn’t learn my lesson then, and I still haven’t now, so realistically, it aint gonna happen.

So my hero doctor gave me things I could try for my throat, and I’ve used them as a ‘guideline’. I’ve ordered something from her list, and I’m doing the lymph drainage massages as she’s suggested. But I’ve also made up my own things.

1. I’m taking shed loads of allicin daily, it’s mostly used as an anti viral but it’s also anti bacterial and all round brilliant.
2. I’m overdosing taking quite a lot of vitamin C and zinc.
3. I’m brushing my tonsils with a kids toothbrush soaked in coconut oil.

Yes, you read that right. I’ve got a children’s soft toothbrush that I’m putting coconut oil onto and then gently ‘brushing’ my tonsils with it. It’s not as crazy as it sounds, not when you consider the things I’m not doing, like freezing my tonsils with liquid nitrogen or cutting them open myself so the NHS are forced to remove them. I haven’t seen this mentioned anywhere online, this is entirely my own idea. The thought has crossed my mind that maybe I’m the only one doing it because it’s a bad idea. But nah, I think I’m just an undiscovered genius. The idea behind it is that it’s getting the coconut oil directly where it’s needed. I tried this oil pulling malarkey (see my last post) and it was hard to get it to the back of my throat without swallowing or choking. It also rubs off any ‘debris’ that may be on the surface of the tonsil where bacteria can breed and any food that’s lodged in the creators and crevices. The gentle brushing action probably also encourages better circulation and lymph drainage. See? All round genius.

Also, because I was at my newly found limit, and was thoroughly pissed off with the NHS guidelines and feeling sulky about it. I decided to go for the ‘kill or cure’ approach, so I’ve been taking 5 drops of the lymph drainage stuff daily, which is what triggered this whole flare in the first place. I figured it would either make it a lot better (win) or make it a lot worse and so get my GPs attention (win).

I’m three days into this plan and my throat is feeling freakily better. Yesterday I had more energy than I had since I finished the clarithromycin I was taking for my throat.  It’s early days, I’m not going to cure a 2.5 year chronic infection in a week, but I think I’m onto a good thing with these methods. I also have a Plan C up my sleeve. In fact, I have a whole damn alphabet up there. Kill or cure, people! Kill or cure! *hears Eye of The Tiger* faintly in the background.

This is my tonsil infection fighting face, oh yes it is.

This is my tonsil infection fighting face, oh yes it is.

Posted in chronic illness, Gordon Medical, Lyme Disease, Strep throat, Tonsillitis | Tagged , , , , | 6 Comments

The Tonsil Diaries – volume 2874

 

“The human I am forced to reside in continues to consume anti biotics but she, nor anyone else seem to know what they’re doing. I am full of pus and now I am bleeding. Bleeding! Apparently her immune system is busy elsewhere. I am depressed and alone. And did I mention I’m bleeding? No one cares about me, just because I, and my twin are hideously deformed. It’s tonsillism, that’s what it is. I’ll cause the human to bleed to death and maybe then I’ll get some attention.”

 

My tonsils have always been an issue. When I was 16 I had tonsillitis (what Americans call strep throat I think) so badly that I was coughing out bits of my left tonsil. It’s permanently deformed as a result and about half the size of the right one.

When I got really sick in my relapse in late 2011/jan 2012, within a few weeks I got tonsillitis, on top of all the other crap. I never recovered from it, or the Lyme stuff. I’ve always suspected it’s one long chronic infection rather than many separate incidents of tonsillitis. I’ve had maybe 5 or 6 acute phases with pus and the works, my GP doesn’t know what to do with me, the Lyme and co and subsequent immune suppression make it far too complex. The ENT dude said it looked red but he didn’t know why then discharged me. I’ve got used to being on my own with it and kept a stash of various anti biotics that treat it best when it flares. People say I should have them removed, like I have any say in the decision! God forbid that I have a say in my own healthcare with the NHS! The powers that be won’t remove them, they’re reluctant to in adults and they definitely won’t given my general health and immune suppression.

sore_throat4

Know how you feel, bud.

My new LLMD instantly honed in on my tonsils and lymph, even though at the time of the appointment I was in a good patch and didn’t list it at the top of my issues. She’s a frickin genius like that. She gave me some lymph drainage stuff and right on cue my tonsils had a hissy fit, threw their toys out of the pram and developed lumps of pus. Not to mention the reddness and random small bleeds. The back of my throat looks like a train wreck, there’s no other way to describe it. It looks worse than the horrific pictures on google images, and that’s saying something!

While I’m waiting for this latest episode to calm down and for my last remaining tests to come back before I have a phone consult with my doc, I’ve decided to take matters into my own hands. You may be spotting a pattern here… I’m not the kind of person who just accepts the cards they’ve been dealt, I’m physically incapable of accepting my illness and will go to any lengths to get rid of it and the suffering that comes with it. I’m that annoying patient that takes 10 drops twice a day when they’ve been instructed to start at 5 and work up and then comes crawling back when they’ve had a horrible reaction and doesn’t know what to do. Yes, that’s what happened and yes I’m suitably embarrassed. I’m also that annoying patient who then googles everything under the sun and brings the doctor several obscure scientific studies from the corner of the internet to justify a hunch or a gut feeling that can’t be quantified in any meaningful way.

It was late last night when I just realised my poor gargling skills had caused me to swallow a blue liquid with ‘Do not swallow’ written on the bottle. It was some specialist mouthwash for dodgy throats that also said confidence inspiring things such as ‘Do not use for prolonged periods.’ I’ve been told it’s basically surgical scrub. When I read the label at the unpronounceable things I’d ingested I decided enough was enough and it was time to bring out the hippy.

health-beauty-doctor-tonsil-tonsillitis-symptoms-cures-mfln6352l

Don’t think I wouldn’t…

So instead of clawing out my tonsils like I tried and failed to do the other day, yeah I’m that hardcore/crazy, I’ve found a couple of possible alternative options on ways to treat my much maligned throat.

1. Regenerative cryotherapy. Yeah it’s a bit left field, but bear with me. Basically you freeze the crap out of the tonsils which kills a whole bunch of infection, gives them mild burns which also stimulants the immune system. You can read more here. Of course the only doctor I can find that’s brave  crazy enough to do it is in Germany. Deja vu anyone?

2. Oil pulling. Yeah it’s hippy, yeah it’s a bit scientifically dubious, but people say it works so it’s worth a shot. The general idea is that you hold some oil, preferably coconut oil in your mouth for 10-20 minutes and somehow bacteria get pulled out of tonsils, gums etc and into the oil as if by magic. Someone said something about lipid solubility which may be it. It’s probably rank, but I’ve ingested so many foul potions in the name of healing, what’s one more? I’m also much more into trying option 2 as it only costs a bottle of coconut oil. Option 1 would be about £600 minimum per Germany trip and I’d need up to three Three.

So there we go, I learned some new stuff to add to my degree in Lymeology from the university of Up Shit Creek. You know the one, about 20 miles south of Shitty Luck, just past Shitty Genetics and right at the lights when you get to Fuck this Shit.

 

Posted in Lyme Disease, Strep throat, Tonsillitis | Tagged , , , , , , | 4 Comments