Cancer, Lyme disease and lessons learned.

A year ago a friend passed away. I didn’t know her very well but she was one hell of a person and she affected me incredibly deeply. I’ve wanted to write about this for some time but I haven’t out of respect for people who were closer to her that might be reading this. I hope if they are reading, that they’re ok with it at the very least, or find it heart warming what she did for me.

When I was severely sick and bedridden in early 2012, like most people in that situation, I got very bitter about it. Why me? I thought. I felt alone, scared and angry. I was finding that doctors didn’t know what to do with me and treated me like I was imagining being so ill. I couldn’t understand why they had so little compassion for someone who struggled to feed herself with metal cutlery, or get to the bathroom unaided. I was surprised at how my friends dropped away, at how I’d get comments like ‘we’re all tired’.

I’d go to the doctors and the first thing they’d do was to rule out cancer. At least it’s not cancer! People would say. I started to think (I was in bed 24/7, and couldn’t even watch TV, I had a lot of time to think). People with cancer usually get a quick diagnosis, after months and months of tests, I was none the wiser. People with cancer get respect from doctors and treated well, because they’re going through this horrible, frightening, life changing thing. I got none. People with cancer get offers of help from friends and family, offers for ‘chats anytime!’ get well cards or offers for housework, or dog walking, or just to visit to say hi, you’re not alone. I got nothing. For treatment people with cancer get everything they need, my friend even had most of her treatments done at home. I paid thousands of pounds for mine, and had to go several hundred miles for it.

It’s not that I particularly wanted someone’s homemade casserole or a card with a funny slogan about nurses. I didn’t want people running marathons wearing green for Lyme research. It’s that I wanted recognition that I was going through the worst time of my entire life, I was in incredible pain and experiencing suffering I didn’t know was possible. I had friends who lived 10 minutes down the road who didn’t come to see me. I was baffled, disappointed and lonely.

Doctors didn’t know what to do with me. There was no plan on how to get better. I was left to rot in my bed.

I wished I had cancer instead. 

Even the possibility of dying seemed like a relief, the idea that my suffering could end was all I wanted. ‘Dead or better’ was my goal, as I couldn’t continue the way I was. I became resentful of people with cancer, of the support they got, from friends and family and the wider community. The help and respect they got from doctors. When I was suffering so much, death seemed like such a relief.

Then my friend got cancer. She was a fairly popular kind of person and everyone rallied around to support her. I watched from afar. Things looked good for her, she reported that her chances were good, she’d have the proposed treatment and then probably go back to her normal life. She kept her job. She started chemo, and although I think she was hiding a lot of the bad bits, she seemed ok and positive. On chemo she would have good weeks and bad weeks, and on the good ones she’d do quite normal things like cooking and going to the shops.

I was jealous. I was beyond jealous. I’d never felt jealousy like it. I would have done anything for ‘good weeks’. To be able to ever cook a meal, or go to the shops. I hadn’t left the house, hell I hadn’t even left my bedroom for anything other than doctors appointments in months. There was no job waiting for me on the other side. The sheer quantity of support she had was overwhelming. I’d never seen anything like it. I tried to tell myself it’s because she’s a great person and well liked, and that I’m pleased she’s getting so much support and well wishes. But deep down I just thought, why wasn’t I getting it? I’m a nice person too. I have friends too. Why doesn’t anyone care about me?

The difference was that she had cancer and I had a poorly understood controversial disease that most of the public has never heard of. I wished I had cancer instead, then I would get all the support I needed, right? Then I’d feel better, right? Then doctors would treat me better and help me, right?

Through this I was still talking to her online. We both had a lot of time on our hands and we played scrabble together. We talked about how the following summer we’d both probably be better and able to go to picnics. I did enjoy talking to her, and I hid my feelings completely. I knew although they were understandable, they weren’t healthy feelings to have, and I definitely shouldn’t let my friendship with her suffer because of them.

Then, out of the blue, I heard some news. The cancer had spread, and suddenly, it went from planning for future trips and picnics, to planning hospice care, funerals and wills.

I was in shock. I completely withdrew emotionally, vanished from the online groups we were in, and buried myself in other things so that I wouldn’t, couldn’t think about it.

I was jealous of someone who was now going to die. That took some processing. Did I want to die? Dead or better, did I still want that? I didn’t know. I was a whirlwind of emotions, and I just blocked it all out. During that time I had improved quite a bit myself. I’d gained a Lyme diagnosis privately and started treatment. I was up and about a lot more and could do things for the enjoyment of it, not just because I had to.

In April 2013 I was at my mum’s in France. I’d managed the travelling and had spent a few days sitting in the glorious spring sunshine, surrounded by nothing but a gentle breeze and the sound of the birds. I went indoors and turned the computer on and there was the news I was dreading. She had died.

I pretended like nothing had happened and walked down the hall to the guest bedroom. I shut the door behind me, fell onto the bed and cried and cried. I cried like I hadn’t cried in a very long time. I cried for my friend, her family and friends, but also for myself. I cried because she was dead, and I was getting better. Because she had cancer and I had Lyme disease, she was dead and I was just starting to live again. I’d be going to picnics that summer and she wouldn’t be. She wasn’t going to get another chance at life, but I got one. I had to fight tooth and nail for it, and pay for it, but I had the chance to live. For the first time since her diagnosis, I was no longer jealous of her. *I* felt like the lucky one. And I felt so incredibly stupid and wrong to have ever felt jealous of her cancer in the first place. I felt so bad for the people she left behind, and I looked at my partner and mum and realised for the first time I think, that my illness wasn’t just about me. They suffered through it too.

People do die from Lyme disease, no one knows how many because it’s so misunderstood it isn’t considered as a cause of death. From people who know they have Lyme, it seems that about half of the deaths are suicide. People kill themselves because living with Lyme can be so unbearable. It’s such a waste, for a disease that can be treated. I am so incredibly lucky and thankful to be here.

I still cry now when I think of my friend. Because she made me want to live, really, really want to live, even when the Lyme made me want to die. She made me feel lucky, despite not getting the support and recognition for my illness, despite the physical suffering, lucky that I’m alive and still able to fight for a future. Lyme patients should get more recognition and the support we deserve, we should have the level of healthcare on the NHS that other comparable conditions have. But at the end of the day, with the right treatment we have a good chance of not just staying alive but living, isn’t that more important than get well soon cards, casseroles and charity marathons?

Thank you, D.
For someone I didn’t know very well, you had such a huge positive impact on my life. I couldn’t tell you while you were still here because I was so overwhelmed. But I hope you now know how thankful I am that you were a part of my life.

Posted in Lyme Disease, ME | 7 Comments

Happy bunny

I’m just going to go for it. My gut is doing AMAZING. Seriously guys, it’s like it’s suddenly remembered how to process food after spending the last year throwing a toddler tantrum every time I ate. I’m ‘regular’ for the first time, in jeez, I don’t even remember. I’d forgotten the sheer quantity of poop that comes out of normal people…. for the past year I’ve only been once every 3-5 days and it’s been the quantity of a rabbits. Probably looked like rabbit poop too. I never could work out where all my food actually went, my doc says it was fermenting inside me. Cool, I thought. My own fermentation plant! I wondered if I’d been pissing out quality wine all this time. The fermentation explains all the gut issues I was having anyway.

So she put me on HCl pills. That’s right people, hydrochloric acid. The stuff you used at school in chemistry lessons where the teacher would go ape shit if you poured it onto your hand to prove that it was actually watered down, because who in their right minds would give a bunch of 14 year olds full strength hydrochloric acid. That stuff, and yes, I did pour it on my hand to prove a point in school. I was that kid. (PS, I was right, it was watered down and my hand was fine.) So now I’m actually swallowing it to supplement the puny amounts of acid my stomach isn’t making.

I’d never even thought of low stomach acid, in all my research, it just didn’t occur to me that could be my issue. But here I am, pooping regular, large, formed appropriately coloured stools, with a tummy as flat as a pancake. I’d forgotten what my tum actually looked like flat. For the past year I’ve looked between 5 and 8 months pregnant.

I still have leaky gut of course, that takes a bit longer to heal, but I think I’m well on the road to that as well.

In other news, I got my test results back that I had done while I was at my new shiny clinic. I really should’ve bet money on them because I was completely right about them all. My vitamin D is still a bit pathetic but not as scary low as before. My morning cortisol is only just in range right at the bottom, which probably means my adrenals are on strike, my DHEA level is ok – phew, as I’ve read supplementing it can give you acne and facial hair, and I’m hairy enough thank-you-very-much and I’ve had enough acne to last a lifetime.

I also had HLA testing, which is some kind of genetic thing. Genetics is the one thing I haven’t covered in my self taught degree in Lyme-ology so I have absolutely no idea about any of it. I spent the night with my results, Dr Google and asking some very knowledgable people in various Lyme groups. From what I can tell, in a genetics 101 preliminary sense, is that I have 1 out of the 2 really bad detoxing genes and the gene that makes you susceptible to Lyme disease. Again, I could’ve told you that before I had the results. I’m a bad detoxer, but not as bad as some people. And to get so ill from Lyme so young*, clearly means I’m susceptible – a lot of people get infected while young but keep it at bay for years or decades.

*Ok, so I’m not really young, I’m 29. **clings onto 20′s for dear life**

I’m not sure what this means for my treatment – once I get the last set of results back I’ll have a consult with my doc about it all. I could guess what it means, but I could well be wrong and I don’t want people reading this and assuming it’s the gospel truth.

So all in all, I’m a happy bunny. A happy bunny with human sized poop. Happy easter!

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Posted in candida, chronic illness, doctors, Gordon Medical, gut dysbiosis, healthcare, humor, leaky gut, Lyme Disease | Tagged , , , , , , , , , , , | 5 Comments

New clinic in California

Hello readers! I’m back from my trip to sunny California where it was cold and rainy for most of the time. Being British, I’m used to rain and it didn’t bother me too much although my poor partner did end up walking around a fair bit with soggy feet. This is a long-ass post as I wanted to review the clinic properly in case anyone wants to know the nitty gritty of it. If you’re not that interested and just want 1 line on it – It’s awesome. End of.

Anyway! The clinic’s called Gordon Medical Associates and is located in Santa Rosa. You can google them to find their brilliant website. This is what I learned about California (San Fran especially), there are many hippies and health conscious people, there are more gluten free, non GMO, non MSG etc shops than I’ve ever seen before put together. There are also more runners in leggings and trainers than I’ve ever seen. So it makes sense the clinic is located in California. Also California is one of only a handful of states where Lyme treating doctors are protected legally. Other states explicitly have a law to protect them, whereas California has a thing that allows doctors to treat outside of established medical practice as long as you agree to and sign a piece of paper saying you understand it’s alternative. It’s genius and the UK needs the same! It means doctors are free to treat you in a way that they think is best, rather than having their hands tied by guidelines – which for Lyme and associated diseases, are just plain wrong.

To put this into context, this is my third private clinic, outside of the UK’s NHS. The first was Breakspear in the UK, the second BCA in Germany. GMA seem to specialise in us medical refugees, the patients other doctors don’t know what to do with! They understand Lyme and co really well, but also everything else that goes along with it, and I mean everything! They know all about complex thyroid issues, heavy metal poisoning, mould, everything that can contribute to complex illness like CFS/ME, MS, dementia, auto immune conditions, the works.

GMA is located on an industrial estate of sorts, a lot like Breakspear. It was raining when we got there and we’d allowed plenty of time for getting lost. Which we did do… in fact we got lost and had to turn around and ended up driving on the wrong side of the road as Wendy was still getting used to driving on the right. Cue me screaming WRONG SIDE! And us swerving to the right. Luckily at 9 am on a raining Tuesday morning there weren’t any  other cars about.

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The reception is suitably hippy. There’s ‘relaxation’ music playing and an indoor water feature made of stone and bamboo. I was wondering if I’d be asked to remove my shoes in full Buddhist tradition, but I wasn’t, much to my disappointment as I had brand  new novelty socks on.

My new doc, is really approachable. Not at all like all the previous (30 or so) doctors I’ve seen. She’s just normal, you can talk to her, she laughs at my jokes, she’s just ‘normal’! Most doctors are so intelligent or just plain lacking in social skills that it’s like talking to a robot. She’s a Naturopathic doctor (ND) The system in the US is different to the UK, ND’s have the same amount of training as medical doctors (MDs) but the last year or two is spent learning natural medicine rather than specialising in a medical field like MDs do. NDs therefore can prescribe conventional medications just the same as MDs but have a more holistic approach. She likes to mix and match prescription and herbal medications depending on the patients needs. And before you ask, yes, herbal stuff can be just as strong and work just as well, if not better, than prescription medications. I’ve tried a few and tend to react exactly the same to like for like herbals and prescriptions.

I very much feel that GMA’s approach is the best I’ve seen so far. They don’t do one standard treatment plan for each disease or issue, unlike Breakspear to an extent, and definitely BCA who have a one size fits all approach. They really take on board all your individual problems and make a plan to suit you as an individual.

My doctor is the first I’ve seen to really understand my gut issues, even though as Lymies go, my gut issues are incredibly basic. She’s been the only one to spot that I have low stomach acid which is a major contributing factor, I didn’t even realise this myself, despite knowing a fair bit about Lyme and associated diseases and problems. The HCl pills are already working wonders!

She’s also been the first doctor to diagnose me with babesia. Babesia is a common co infection which is incredibly difficult to test positive for due to the number of strains and a bunch of other factors. I’ve always believed this is my biggest issue but previous docs have gone purely by my negative tests. Without me pushing the babesia issue, she came to the conclusion on her own based on my symptoms that babs is my biggest issue. She also thinks a lot of the crazies (mental health issues) that I’ve always put down to Bartonella, are actually Babesia induced, hallucinations being a prime example.

She is the first doctor who I’ve actually talked to about the crazies in all their full technicolour glory. Other docs I’ve started to talk about it and they look horrified or confused and I’ve just given up. She looked like she’d seen it all before and wasn’t phased at all. She also displayed no hint whatsoever of going down the ‘well ALL your physical symptoms must be due to your mental health problems then’ like NHS docs do. NHS docs at the mere mention of crazies say you’re depressed and give you anti depressants like they’re sweets. I’m not even depressed!!

Bartonella was a given despite my negative tests, due to symptoms alone, and then she saw the picture of the bart straie rash I had on my leg… she asked me which leg it was and I said my right, and she said ‘ah the same leg as your joint problems’. That was a penny dropping moment for me. I’d never connected them before, I had read that bart can sometimes cause joint pain but because one of Lyme’s hallmark issues is joint pain I’d just put it down to that. But now I think about it, it makes way more sense for my joint pain to be down to bart because all my Lyme neuro symptoms have 99% gone now, and yet the joint pain remains. Also, joint pain was my first ever symptom at the age of 13, and I’ve suspected I’ve had bart since my teens.

The whole consultation was a series of penny dropping moments for me. Despite being on the treatment merry go round for 18 months and spending all my time online immersed in the Lyme world, there were still pieces of my jigsaw that I couldn’t get into place. She put all those pieces together for me and it was like I could suddenly see the picture of my illness properly for the first time.

The tests she wanted doing were really sensible, unlike other clinics where the testing bill comes with three zeros, this lot only came to $300. (About £200). I was gobsmacked. She didn’t want the Lyme tests repeated (I already had my Igenex positive serology and LTT positive from infectolab), no point testing for coinfections again (I already had 2 negative bart and babs tests, and a bunch of other positives). She only wanted tests that would actually change the way she would treat me, which is HOW IT SHOULD BE. Unlike at other clinics where they want all kinds of tests to ‘prove’ something that has no bearing on your treatment anyway. I’m looking at you Breakspear….

She talked about the general plan for the next few months, other docs don’t tend to do until they get the test results back which is annoying as you come out of an expensive consult none the wiser as to what’s going to happen. The plan is to really concentrate on healing my gut first and foremost. So I have fluconazole every other day for an anti fungal (praise the lord, no other doc would hand over the fluconazole bad boys “Oooooh it’s too liver toxic” they’d say. (Nevermind that the candida it’s treating is also liver toxic, and nevermind that my liver tests have never once been out of range, ever, even when they were expected to be while on IV meds). So yeah, I have fluconazole, a GI repair mix of things like glucosamine, glutamine,  some enzymes etc etc, a bottle of gut calming stuff to stop it getting so angry at food, and some pancreatic liver enzymes as judging by my odd looking tongue apparently I have spleen issues. I was mega dubious about this until I got back and started googling. Turns out she’s right about that too!

Once I’ve successfully introduced all that (I only introduce one thing at a time so if I have a bad reaction, I know which thing has caused it, also GMA are the only clinic so far to have advised me to do this. I had previously found out the hard way myself.) Once I’ve introduced all that I’m starting on the lymph detox, as she thinks my chronic sore throat could be a blocked lymph node, I’m not 100% convinced on this, but it’s worth a try as absolutely nothing else has ever worked! Then I’ll introduce mega slowly the babesia treatment. I’m starting on the gentle one (MC bab) as she thinks I’m going to react severely. You start at a mega low dose and work your way up. Then I’ll go onto the stronger stuff (A bab). After that I’ll be giving the bart a good bashing with A Bart. She thinks I can go straight onto the strong stuff with that.

Once my gut is in a better position she thinks I’ll be able to withstand the prescription meds for babs and bart better. Also, starting on the individual herbals means she can ascertain how I react to each so she’ll know which prescription meds will be best later on. It’s all very sensible and exactly how I’d do it!

Which brings me to COMMUNICATION. Breakspear were ok at communication, not great but ok. You could talk to patient liaison whenever you wanted, and arrange phone appointments, which was satisfactory. BCA were AWFUL. Holy crap they were awful. It would take me about 10 emails to reception to actually get a reply, it once took 5 weeks to get an urgent phone appointment, I would be stood up for phone appointments, or they’d just be 4 hours late. I complained about it to the head honcho and of course was ignored.

With GMA it’s a whole other world. A whole other world I tell you. You can email your actual doctor, and the assistant replies within 1 working day with what the doctor said. They WANT you to email them all the time with updates as to how you react to different meds and how you’re doing. I’ll be having regular phone appointments, which from other people I know who are patients there, are easy to arrange and they call on time.

The only downside is that they’re on the other side of the world. The jetlag is a bugger. Going there is ok, I just went to bed super early and kept waking up at 5am. But coming back…. total nightmare. I didn’t sleep for 27 hours straight and had all the exhaustion of a long flight. Now I’ve had two 12 hour sleeps in a row and although I’m less tired, my body clock is still on Pacific time!

I’m worried about the faff of getting prescription meds filled over there and getting them shipped over but there are lots of options for how to do it, and I know lots of people who do it so I can pick their brains.

About the costs, it didn’t cost nearly as much as I thought. I had always dismissed going to the US due to cost, without even looking into it. (FAIL!) I wasn’t well enough to have gone before I don’t think anyway, but I am shocked at how little it actually cost. The flights are cheaper if you go out of the summer season. I found that the flights leaped up in price in April, which is why we went at the end of March. I recommend staying in a AirBnB place (google it), as for the price of a standard hotel room you can get a whole apartment with a kitchen so you can prepare all your own food, great for saving money and great if you have a weird diet like me. My doctor’s consult was $510 I think, which is quite pricey, but the tests were really cheap. Herbal medication tends to be cheaper than prescription so you can stick to that route if you want to. Phone appointments are much cheaper, I’ve forgotten how much, but pretty standard compared to worldwide private clinics. You only have to go in person once a year, and if you make a holiday out of it, it’s not too bad. This year we went to Yosemite national park and mooched about San Francisco for a few days before coming home. Next year we plan to see Salt Lake City, Las Vegas, the grand canyon, hoover dam etc) and maybe LA.

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Initially my partner wanted to choose a different doctor, but I chose her on a gut instinct. We came out of the appointment and my partner said she was definitely the right choice! When I got  back to the hotel that night I felt, and still do, totally unworried. For the first time in my Lyme treatment I feel like the doctor knows more than I do…! (How it should be!) and I don’t have to be googling everything, second guessing, or pushing them in a certain direction. I feel that I can just let go and ‘just’ be a patient, not my own doctor. How it should be! I feel like they’re not going to give up on me if it doesn’t go to plan, like other doctors have in the past. How it should be! 

There are no quick fixes in Lyme disease (and especially not in co infections), unless you catch it very early! But for someone as complexly ill as I was when I started out, I’ve already come a really long way. I’m grateful to BS and BCA for getting me well enough to be able to travel to California. To see my new wonderful doctor and to be able to be a tourist and enjoy California as well. But they wouldn’t have got me all the way better. I’m just not willing to settle for 50% better, I want 100% or as close to it as possible. I want to be able to have a career, do sport if I want (well, maybe a yoga class hehe…) have more kids, all the things other people take for granted. I think GMA could get me there.

Maybe GMA wouldn’t be right for everyone, but I think they’re perfect for me and where I am with my illness. I’m definitely in the second half of my recovery, which is usually the hard part to actually make progress through.

I think I’ve pretty much covered everything! Sorry it’s so long! If you have any questions leave a comment and I’ll get back to you :D

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Edited to add – I’ve been told naturopathic doctors can’t prescribe conventional medication in all states. They can in California, but if you’re planning on seeing a ND in another state, check before you book!
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Posted in candida, chronic fatigue syndrome, chronic illness, Gordon Medical, healthcare, leaky gut, Lyme Disease | Tagged , , , , , , , , , , | 16 Comments

10 Tips to deal with chronic illness

For my 150th blog post, I thought I’d write about the stuff I’ve learned. Read it, you might like it.

1. Accept your style – Zen acceptance or kickboxing your way through
Everyone’s different. Some people need to find acceptance in their illness, accept it with a quiet dignity, zen like stoicism and work their life around it. Some people can’t do this and have to kickbox their way to find ways to drastically improve their health at all costs. They may complain, moan and generally be more angry at the world than an average 15 year old. There’s no right or wrong way, both requires a crazy amount of strength and determination. There’s nothing wrong with coping in a way you need to cope, even if it’s not the way you were brought up to deal with things, or it’s not the way your friends think you should be dealing with it. If you try to take an approach that isn’t right for you, you’ll just get more and more frustrated. Follow your own path, not the one you think you should be taking.

2. New friends
It’s comforting to think the friends you make when you’re young will be there for you forever, but even in people without severe chronic illness it doesn’t always work out like that. People change in all kinds of ways in life and chronic illness is a big change. If you can no longer work or socialise in the way you used to then you’re bound to have less in common with your friends. If their life revolves around long work hours and partying at the weekend, and yours around doctors appointments and popping pills, it’s only natural to drift apart. They may not approve of the way you’ve chosen to deal with your illness and think you should be fighting harder or be more accepting, they probably won’t understand what it’s like to be chronically ill.

When you get sick, you WILL lose friends, the upside is that you’ll gain new ones.. People who ‘get’ your situation, empathise and can have a laugh with you about it. People who are also online on a Saturday night talking about the best way to take painkillers to avoid side effects or which containers are best to puke into. These are your new tribe, you can fight it all you like but these are the people who help you feel less alone. I don’t think it’s healthy to exclusively have chronically ill friends, but a good mix is great. The friends from before your illness you do manage to keep, they’re the real gems that you should cling onto. They’re a rare breed of people who are empathetic, understanding, caring and tolerant. I salute anyone who can put up with my Facebook rants about pain, pills and pooping. It hurts to lose friends, but usually the ones you lose aren’t the really good ones anyway.

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3. Don’t put up with bullshit
Living with chronic illness is hard enough, why put up with any more crap than you have to? I operate a three strikes and you’re out rule with friends, if they seriously upset me three times I’m done with the friendship. I cry enough anyway without having people upsetting me on Facebook, what’s the point? Just because you’re ill doesn’t mean you have to put up with crap and be glad for any scraps of friendship. Quite the opposite, be choosy about who you surround yourself with, when you’re ill it’s even more important to have people who make you smile, laugh and are there for you.

Getting the run around from your doctors surgery or consultant? Think you have to put up with it and be thankful for getting any help at all? NO. You deserve to have good healthcare, kind doctors, effective treatments and to be treated with respect. Stop being so British and polite, complain if you’re not getting what you need. If you’re too unwell, ask your carer or advocate to help. You know your body and mind better than anyone else, don’t let anyone tell you otherwise. If you don’t agree with a doctor’s decision or diagnosis, you can challenge it or switch doctors.

4. Prioritise without guilt
If you don’t have the energy to do everything, that’s ok. Work out what’s more important, and DON’T feel guilty about it. So if you only have enough energy to either do the grocery shopping OR meet a friend for lunch. Which will make you happier? Which can be delegated to your very understanding carer/partner/family member? If you feel that you need to do the shopping because you feel fed up of not being useful and you want to contribute, fair enough. But if someone else can do it, and you feel that you’re lacking in social contact and miss your chum, go and see your friend. If you get depressed from never doing anything you enjoy who’s that going to help? No one. Only have the energy to have a shower OR watch a film with your other half? Get them a nose peg.

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5. Have goals
Even if it’s just to have a shower, or tidy your house, make a plan for what you’d like to achieve each day that’s within your limits but still pushing yourself a little. Feeling like you’re not achieving anything in life is more depressing than running out of milk thus preventing you from drinking your morning cup of tea or coffee. It’s that depressing.

6. Be appreciative.
The more appreciative you are, the happier you are, generally. I could write a pseudo scientific formula for this but quite frankly, I can’t be arsed, I’m prioritising my energy! Be thankful for the health you do have and the things you can do. If you’ve made improvements in your health, make sure you stop every now and then to really take stock of how far you’ve come, rather than focusing on how far you have left to go.

Remember those pre-illness friends who have stood by you? Your carer/partner/family member who went to the supermarket for you? They’re real stars, treat them as such. Tell them how lucky you are to have them and how mind bogglingly amazing they are. It’ll make them and you feel good.

7. Don’t beat yourself up
On a super strict diet to help with your illness and crave something banned? It’s ok. Having an occasional dirty McDonalds or a chocolate bar when you really shouldn’t, is only human. It doesn’t mean you don’t care about your health. Having the odd treat is part of your self-care package. You need little treats to keep you going and remind you it’s not all doom and gloom. If you suffer consequences after leaping off the wagon, chalk it up to experience, was it worth it? If so, then what’s the problem? If not, maybe downgrade your treat to something less damaging. At the end of the day, be kind to yourself.

8. Allow yourself to grieve
When your life drastically changes and you lose things like a career, friends, even family, you’re going to grieve it. People don’t have to die for you to feel grief, you can grieve your old life and the people in it. It’s normal and healthy. What’s not healthy is to get stuck in the grief, you need to let yourself feel the sadness and try to let it out in whatever way suits you best, then try to move onto something happier. Lots of people use art or music to release their grief, or other quiet dignified ways. I like to metaphorically kick and scream very publicly, or write a ranty blog post. Because that’s how I roll (point number 1).

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9. Have a good laugh about it
Let’s face it, chronic illness can be hilarious. Don’t agree with me? I once asked my partner to go and buy a tricycle at 3am, I’ve accidentally drunk water that’s been inside a hot water bottle for a week, I’ve spent hours changing the lyrics to songs to include as many types of cheese as possible, and I’ve written extensively about the hilarity and quite frankly slightly traumatising experiences with a 3 day poop test involving a lot of prunes, 1 glove and the world’s smallest poo ‘spork’. And that’s without even going into my poo baby incident (fecal impaction) that I named David Cameron and ended with explosive diarrhoea in an open toilet cubicle of my local A&E department which was genuinely the happiest moment of my entire life.

Chronic illness is funny. Have a laugh, it’s good for you.

10.
There isn’t a number 10. I called it 10 Tips because it sounds nice, but I only have 9. Suck it up people. You were hoping for 10? Yeah well I was hoping for a life full of health, a career, travelling and a big family. Life throws you curve balls you weren’t expecting, you just have to roll with it and make the best you can with what you have. Happiness isn’t the destination, it’s the journey. You don’t have to have everything you want to be happy. I’m happy despite my illness, I take great pleasure in sticking two fingers up to illness and doing it my own way, you can too.

SPONGE BOB FINGER

Posted in chronic fatigue syndrome, chronic illness, Lyme Disease, ME, Positivity | Tagged , , , , , , , , , , , , , , , | 11 Comments

B12 Deficiency

So I was doing some whining about how I seem to have gotten a lot worse the past few months in Lyme Disease UK’s discussion group (plug plug), and with help from several others and my decrepit brain slowly turning it’s cogs, it all suddenly dawned on me. I’m B12 deficient.

I’ve had worsening air hunger to the point of having to keep the window open at all times again, gulping like a demented fish and feeling like I’ve got a plastic bag on my head with the oxygen being sucked out. I’ve never actually suffocated before, but this feels a lot like it and it’s rather unpleasant.

I’ve had increased exhaustion, muscle aches and ‘post exertional malaise’, now my disapproval of the term ‘malaise’ aside, it was really becoming a problem. The only thing keeping me from being completely housebound again was my denial. I would go out, struggle through things and then suffer when I got back. And I can tell you, it was suffering. I felt poisoned and nauseous and my muscles HURT, it hurt to move, it hurt to stay still, I was writhing about for most of the night feeling like my body was trying to kill me.

I also have felt increasingly depressed, for no reason I could really pinpoint. I found things to complain about of course but being depressed isn’t really my natural modus operandi these days.

The more I read about B12 deficiency the more it all made sense, it was a lightbulb moment and metaphorical light shone down from the heavens onto me producing a moment of clarity and an incredible D’OH feeling. I’ve been taking minocycline for a few months and what no one told me (thanks docs!) was that it prevents the absorption of quite a few nutrients, B12 being one of them. I was meant to take a multi vitamin but taking 1 a day when you’re also taking stuff that robs you of vitamins doesn’t really cut it.

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So I’ve been researching like crazy and although I’m no chemist and don’t really understand it all, the general gist I’ve learned is fascinating. Listen up people, I’m about to give a chemistry lesson for chemistry dunces.

Tetracyclines are nutrient robbers, somehow. So you don’t absorb what you’re meant to from food and get deficient. Now people with chronic Lyme all tend to have the same genetic mutations (I don’t like to call them defects, we’re not defective, we’re evolved and special dammit.) which makes you really bad at detoxing out the crap that’s bad for you. I.e toxins from infections, pesticides, chemicals in food yadda yadda. Guess what else helps you detox? Certain B vitamins. Are you getting the shining light moment yet? What do you get when you cross a B deficiency with someone who desperately needs all the B vits they can get to detox? EXTRA BAD DETOXING, I would assume. *shrug* Which explains the poison feeling and muscle pain. The air hunger could be from a kind of anaemia associated with B12 and/or iron deficiency. Basically when you feel poisoned, you probably are and when you feel starved of oxygen you probably are.

This is about as scientifically accurate as a 5 year olds explanation of, well, anything, so don’t take it as gospel, ask your doctor if you want to hear the proper stuff.

The next thing I did was to chomp down loads of B vitamins. I took 3 a day for a couple of days. I woke up feeling like a new person, I went shopping and survived crazily well and the PEM wasn’t nearly as bad as it’s been lately. The depression has miraculously lifted and I feel like me again!

I’m now on a mission to pack in as many vitamins as possible, also iron. I ate liver for the first time and it was surprisingly ok. I wouldn’t want it all the time but it’s not bad, and if you’re thinking about giving it a go, do it. I’ve ingested a hell of a lot worse in aid of my health, trust me…. (Sauerkraut anyone? barf.)

I was considering getting my GP to do a B12 and ferritin test before I went on vitamin mission but after reading about the complexities of testing for it and knowing how the NHS will take the shortcut and only test serum B12 at best and just a full blood count for anaemia at worse, I’ve decided to go ahead and try to make myself feel better ASAP, if she wants to do the test then she can but by then I’m hoping my levels will be back to normal.

You don’t have to be taking tetracycline anti biotics to get a B12 deficiency. It can be caused by loads of other meds, including proton pump inhibitors like omeprazole, and also from gut absorption problems. Some people just don’t absorb what they eat. It doesn’t always show up in normal blood tests, especially if your red blood cell count is normal. It doesn’t always cause anaemia.

The symptoms of B12 deficiency – exhaustion, neuropathy, neuropsychiatric conditions, tachycardia, can range from general tiredness all the way to Multiple Sclerosis and it also overlaps a lot with Lyme disease. Despite all the medical knowledge I’ve amassed over the past few years, I hadn’t come across something so simple causing so  many problems and so many illnesses that is so poorly understand by most doctors.

B12-Deficiency-Liver

If you suspect a B12 deficiency, watch this video, it explains it far more than I ever could as it’s hugely complex. Then read up about the testing so you know which tests you need when you go to the GP. I feel so lucky that my brush with B12 was just that, a slight annoyance due to a med I was taking. For some people it can be life changing and lead to severe psychiatric problems and multiple sclerosis, it’s probably also a large contributing factor to ME/CFS in the absence of tick borne infection.

Moral of the story? Supplements aren’t there to piss you off and bankrupt you.  (I was only taking the minimum every 3 days or so cos I’m naughty like that). Take the pills!! Lots of them. Frequently. With gay abandon!

Posted in B12 Deficiency, chronic illness, Lyme Disease | Tagged , , , , , , , | 8 Comments

Happy V day

Valentines day is upon us. People are desperately trying to find a suitable card and present that poetically represents their feelings of ‘I quite like you, maybe not enough to marry you right now, but you can share my chocolate.’ or ‘Marrying you all those many, many years ago was quite nice, it’s gone a bit downhill since then, but I don’t hate you yet.’

truthful-valentines-day-card-lets-stay-together-as1

There needs to be a set of V day cards for Lymies and their partners. I suggest the following phrases.

To the Lymie in your life: Roses are red, violets are blue, I’ve got a condom so I don’t catch stuff from you.

To the carer in your life: Dearest sweetheart, on this special day I’ve made an extra effort and have washed my hair and put deodorant on. I’m ready for light to moderate sexual activity as long as I can lay still and it doesn’t exceed 4 and a half minutes. 

Because here’s the thing, Lyme isn’t just about being too sick to work, or as a ‘get out of jail free’ card to avoid much dreaded family get-togethers. When you’re severely ill it affects everything. It’s a wonder any partner stands by you to be honest, but for reasons I’ve never quite worked out, some do. Some are total arse wipes about it and abandon you when you’re at your lowest, but some step up to the plate and fulfil the carer role like a super trooper, (but without the heavy artillery and dodgy haircut.)

The ones that stand by their very sick partners are heroes. They’re the unsung heroes that deserve so much more of the credit when a lymie recovers. The lymie may get all the attention and praise, but it’s the partners who made it all possible.

Which is why it’s such a bummer when articles like this come out. It confirms what the Lyme community already strongly suspected, Lyme and co infections can be sexually transmitted, not as readily as HIV, but it’s still a very real risk, and it’s how some people in the community probably acquired the infections. Again, partners are getting the raw deal, not only do they have to forego a lot of hokey cokey because their lover is too sick, but when they DO get jiggy with it, they’re going to be constantly paranoid about catching horrible life changing infectious diseases. I talk about Lyme and bedroom adventures in more detail in my post Let’s Talk About Sex.  (Not my personal bedroom adventures, mind).

My partner and I are probably ok because we’re rainbow flag waving, IKEA going, cat obsessing, sensible shoe wearing lesbians. The answer to the question ‘What do lesbians do in bed?’ is ‘Low risk of disease transmission activities.’ ;)

So back to the romance. Chronic illness and romance aren’t natural partners. Like President Vladamir Putin in a gay relationship with Alan Carr. Can’t see it happening to be honest, I don’t think Alan would touch Vladamir with a barge pole. But you still have to try, don’t you. Even if it goes horribly wrong, it’s worth a shot. Get a take away, watch your favourite TV shows together, thank your amazing partner who has stood by you with light to moderate sexual activity, and stay away from ships and seaguls.

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Happy Valentines day.

Posted in chronic illness, Lyme Disease | Tagged , , , | 1 Comment

Progress

I sometimes wonder what the point is. Why I’m going against the mainstream, why we’re spending so much money and sacrificing so many things to try to get me better. Why not just go along with the ME diagnosis on the NHS? Why not just accept my bad luck and live out my days confined to my bed with the occasional wheelchair trip out? This is why. This is what living with ME was for me.

My symptoms before treatment:

  • Extreme fatigue and weakness – Could only crawl on hands and knees, couldn’t lift metal cutlery, used plastic
  • Muscle pain, especially in back, couldn’t stand upright
  • Nausea – frequent vomitting, spent every birthday, anniversary etc in bed with my head in a bucket
  • Dizziness/vertigo – the room was literally spinning, felt like I was falling through the air, with my stomach at the top, 24/7.
  • Night sweats, soaked through T shirts, woke up soaked and cold, kept clean ones by the bed so I could change and not need to wake partner up to get a clean one out.
  • Air hunger, had to keep window open even in the snow so I could breathe
  • Intermittant tachycardia, like I was running, even while laying down still
  • POTS, postural orthostatic tachycardia syndrome – on standing, HR went to 120-150 and blood pressure drops, so I would faint
  • Palpitations several times a day
  • Crushing chest pain on exertion (stairs) that went down left arm, breathlessness
  • Confusion, not knowing where I was frequently, forget everything I was told
  • Dementia like memory problems, would use half a bottle of shampoo as I’d wash my hair over and over forget I’d already done it.
  • Brain fog and cognitive dysfunction – couldn’t add single digits, speak whole sentences without forgetting words
  • Weight loss, lost a stone (14lb) in first 2 weeks, never put it back on, BMI hovered around 18 (healthy is 18.5 – 25).
  • ‘Tired but wired’ feeling, exhausted but couldn’t sleep
  • Permanent headache
  • Frequent migraines where my legs would go completely numb, one of my arms would shake, I could barely open my eyes and couldn’t speak, light and noise sensitive.
  • Numb facial muscles around mouth so I’d dribble drinks and have to use a straw
  • Sore throat – would take painkillers every 4 hours for it, didn’t respond to any numbing sprays or lozengers.
  • Joint pain
  • One foot swelling randomly
  • Excrutiating bladder spasms where I’ve thrown up and passed out from the pain
  • Random strange rashes

I couldn’t live like that. I was bedridden, I couldn’t get food or drink for myself. I was one step away from needing help going to the toilet and washing. I probably would’ve died in 5-10 years. The NHS consider M.E. a disease of the mind on the whole. Do these symptoms sound like a mental health problem to you? The treatment is CBT and ‘graded exercise therapy’ which usually makes people permanently severely worse.

With private (paid for) treatment for Lyme disease my symptoms are now -

  • Fatigue – instead of being bedridden, I can now walk around a supermarket
  • Post exertional malaise – if I overdo it I feel poisoned, but at least I can do things now!
  • Sore throat – hasn’t changed much
  • Air hunger, but I can now have the window closed a lot of the time
  • Breathlessness, but it takes more exertion to get out of breath, like walking quickly outside rather than just across a small room.
  • Brain fog but no more cognitive problems
  • Headaches but virtually no migraines
  • Only occasional bladder spasms that don’t last long
  • No heart problems
  • No walking problems

I can go out and see friends, I go to the supermarket, the park, pubs, restaurants, I went camping last summer. I can participate in life again. If I keep going, I can participate fully, I’ll be able to work and have kids and do everything everyone else takes for granted. Maybe even take up a sport!

Lyme and associated diseases doesn’t make everyone as sick as I was, it’s a spectrum and there are many people who are positive for the disease but are asymptomatic where it’s laying dormant. But in a way I feel lucky for being so ill, because it meant the decision to get treatment was easy. I don’t envy people having to weigh things up as they’re fairly functional still. I don’t know what I’d do in that situation.

I don’t know what it is that’s still holding me back, I suspect co infections that have never been adequately addressed like bartonella and babesia. I may not be able to afford months of intensive treatments to get to into remission as fast as I could, but I’ll get there eventually and I’m tentatively hopeful for the future. It can take anywhere between 1 to 5 years for people to kick this, and that’s with the top experts and access to the best treatments. In the UK we have neither of those things.

People might be thinking that after trying to get better for 18 months I haven’t made much progress as I’m not back to work and ‘normal’ life. Well, no, I’m not at the finish line, but the progress has been huge.

th

Posted in chronic fatigue syndrome, chronic illness, Lyme Disease, ME, Myalgic encephalomyelitis, progress | Tagged , , , , , , | 4 Comments