Troubled by my choices

What’s is troubling you today? Is it your Hidradenitis Suppurativa?

Well, if it is you are not alone. I have been managing my HS through diet for the past 11 months. It has been going really well. There have been ups and downs and even some remission.

Mostly I have avoided having any foods or drinks that I know kick my HS off – not too much fruit, no gluten, only raw dairy – no milk, limited night shades and so it goes on. 

Remember how I told you I was just about resisting temptation? Well, along came Christmas.

I fell off the wagon. I ate three or four homemade mince pies. I ate some homemade tiramisu. I ate some homemade Eton mess. I ate some homemade Panna cotta. I know, I know, you get it. Lots of puddings. That’s not all. I drank some Baileys. I had some Cadbury’s chocolate. Do you know what? I thoroughly enjoyed all of it! 

So now I am suffering. I have had recurring sores and old tracts have opened up, causing me to have pain when I walk. Along came the familiar pattern of having to change dressings whenever I had to use the bathroom. Not only that, but I have had two more spots come up – both in completely new sites, where I have never had HS before. Ever wondered what you would do if it suddenly sprouted in your armpit? Well, here it is! There is nothing I can do, except be a little sad. I have tried to be positive; however, being grateful for the amazing technology of the dressings I use and the fact I get them all free can only carry me so far. I am grateful, but I also want to cry. Is it fair that I can’t enjoy a few desserts over Christmas? It wasn’t even like I had too much! 

I know I have the option to go back to the antibiotics. It gives me comfort that if I really cannot get it back under control using my diet (studies show that willpower is finite!), I have a Plan B. Part of me feels like it is selfish to try to manage the disease using diet, as it takes so much longer to heal. I feel sad that my pain and grumpiness affects my family, when it could so easily be rectified if I just took the drugs. We could all be happy. Temporarily.

That said, the results I have seen from eating a balanced, but carefully tailored way of eating have allowed me to live a pain-free life for nearly a year, with no side-effects, no risk of immunity to antibiotics, no need to constantly balance the good bacteria in my body with probiotics. Now, if I can just get there again….

So, what is next? Well, we will see.

I give my body, my mind and my willpower another week. If the pain starts to subside and the wounds begin to heal, I will hold off on the antibiotics. If the pain continues and my quality of life continues to diminish, there will be a (reluctant) call to the Dermatologist and I will take the medication that gave me life back in 2012. 

I feel I am able to make choices about how to manage my disease and just for today, that gives me the power to say no to a croissant! 

Whatever your choices are today, remember, you are trying your best – be kind to yourself.

Working my way back to AIP. Again.

It’s been well over a month since I finished my antis and I have a few flares on my unmentionables. They are at the front, so don’t rub when I walk and I’ve actually learnt to accept them. I realised that just because I am having a flare, it does not have to mean I am a failure or that it is game over. It is just part of my life and if it pops up in an area that doesn’t cause me too much grief, I’m happy with that!

I really am trying to be good. I had been writing a food diary religiously and I do plan to get back to my nutritionist doctor. I have ordered more Bactivit and more Permeaprotect and have been taking it all as advised, along with cod liver oil. Do these things work? Who knows?! 

Going back to AIP eating is a tough call. The best part is that eating mostly paleo/AIP for the past two years means that jumping back in the saddle is not too scary, although I can’t say I’m 100% back on board just yet. However, I rarely eat processed foods, so that’s no biggy. I never drink any sodas or fruit juice, so nothing to miss there. I have cut out wine for the past two weeks – I didn’t even drink when we went to visit some vineyards. It doesn’t take as much effort to say no anymore and I guess coming to terms with the longevity of the disease has stopped me being so emotional about having to be denied certain foods. That’s not to say I’ve got it cracked, but it’s just that if I look at where I was a year ago, it really has gotten easier and easier.

We currently have a freezer full of bones, carrot peels/ends and celery just waiting for my stockpile of stock to run low. We have a slow cooker ready to make the stock if it does get low. We have pork belly curing in the fridge ready to make the next batch of bacon. We have a bag full of measured out ground spiced pork sausage for breakfast. I have sliced onions and frozen them in weeks worth of portions, ready to use and peeled and halved all the garlic I need for the week. I have peeled and topped and tailed carrots in a tupperware in the fridge – easy for a snack or to use in my recipes.

We do all of these things as a family, which takes a lot of the effort out of them and even if I am in the kitchen prepping food, Mr B will be helping by entertaining Baby B or sorting out another meal and Ty will be folding washing or unloading the dishwasher. There is definitely about having a complete group effort that takes the pressure off and makes the whole thing much easier.

I am still battling with a bit of a sugar dragon. Tonight I caved and as I have a whole bag of beautifully ripe avocados, I indulged myself and made an avocado chocolate dessert using 100% unsweetened cocoa powder, organic honey, coconut oil and of course avocados all thrown in a blender and whipped up into chocolatey heaven. No reactions yet and even though it was a little avocadoey, I really could see how avocados can be used as a creamy substitute in puddings. I reckon if there had been another stronger flavour in there (mint perhaps?), I really would not have tasted the avocado at all. In any case, it was delicious and filling and not forgetting that if I was eating like any normal person, I would’ve just made one of the healthiest chocolate mousses out there!

Whole 30? Hmm…go on then.

I’ve been making a few noises about doing a Whole 30. I would have loved to join Popular Paleo for her Whole 30, starting the 1st october, but I’m not sure I’m prepared enough. For a start I need to read It Starts with Food again. Secondly, I have to get my head round slaying the sugar dragon. Again. Thirdly, I need to also acknowledge that I am drinking too much coffee (only 1-2 cups a day, but it is definitely becoming a habit) and should probably use this Whole 30 as an opportunity to knock that on the head, too. I will also be saying no to red wine, “paleo’ treats, honey, too much fruit and too much of anything really. I would like to use the Whole 30 period as a time to get some control over my food intake.

I definitely need to stock up on some supplies before I start. I have only a smidgen of coconut oil left. I need to buy something I can make snacks with. Maybe some olives. It’s so hard to find good olives here that aren’t doused in loads of preservatives. If I do find natural ones, they cost a small fortune. I also need to read all my recipe books and online paleo snack resources – of which there are hundreds! I can’t make anything for the freezer, as we still haven’t got an operational one. On a bum note, it looks like our insurance will not be replacing our chest freezer, so we are going to have to get it back in the house and try (again) to get rid of the rotting smell. Yuk😦

I can see I’m already making a lot of excuses – I am already feeling some kind if inner tantrum going on and I haven’t even cut any sugar out yet! I definitely need to get my ‘shuns’ in order. Preparation. Organisation. Motivation. Currently, I’m not fully equipped in any of these areas. Plus I feel yukky today. It always seems to be after I eat roast chicken. Does anyone else get this?

So, whilst this is a post about doing a Whole 30, it’s more of a statement of intent than a well constructed plan. If anyone else cares to join me on a Whole 30, let me know. It maybe the motivator I need to get started….

My Paleo Success story!

I sent in my Paleo story to paleoplan.com and the lovely Neely Quinn sent me an email to say it had been published. Have a little read🙂Screen Shot 2013-09-25 at 15.08.30

http://www.paleoplan.com/2013/09-24/paleo-success-story-losing-weight-healing-hidradenitis/

 

A dramatic mini flare.

Life has been rosy lately. No Hidradenitis Suppurativa means I am a new woman. I can sit down like a young person again – no awkward movements whilst I ease myself into a chair like an arthritic 90-year-old sucking on a lemon. I can walk for miles without developing a John Wayne swagger. I can let Baby Bodros jump up and down on my lap without wanting to cry out like a wounded dog. I go to work. Actual work and I physically work my ass off. To a normal person, these little delights are commonplace and now I am also guilty of taking it all for granted, as it has been so long with no pain.

Then – uh, oh…complacency came and bit me on my healed, pain-free, little ass! We had a take-out and the next day – mini flare!

It was an asian shrimp and ginger dish. No extras, no rice, no noodles, but no doubt cooked with sugar, soy and God only knows what other unhelpful foods this HS sufferer should probably avoid. And it wasn’t even that good!

I developed a tiny spot in one of the unmentionable zones. It was small and leaked straight away. I nearly cried. Not from the pain, but reaching for all my little potions to clean it brought back the horrible memories of constant cleaning, wound dressing, confinement to the house during a flare and all the emotions I went through at these times. Yes. I was feeling very sorry for myself.

Two days later and it is all fine. It has nearly healed and after much placation by Mr B, my Inner Drama Queen has headed back up to her tower, back on look out for the next inevitable, looming crisis. He gently explained that it took the HS two years to get as bad as it was, so a little hiccup is unlikely to induce over 30 open sores overnight. I had been so used to any little flare aggravating the whole area, it is hard to believe that with no open sores, a little flare will remain just that. Little.

So the moral of the story? Be kind to yourself and don’t freak out. Our HS is always going to be a part of us – a part of us that we have limited control over – so we will always have to find ways to adapt around it.

Bonne journée🙂

Crossfit? Nah! I’ve got Mcdonald’s!

I’m still HS free and kind of wondering what to talk about nowadays. Not in terms of talking – I never really shut up – but more in terms of saying anything relevant on my blog. Plus I’m always super tired, because of work.

I have been meaning to start exercising ever since I lost a ton of weight and fantasized about how great my body would look now it’s thin, if I only had a micro grain of motivation to exercise. Yes, there are all the usual excuses reasons – mainly no childcare, moving house, no space, no yoga mat, a bone in my leg. You get the picture. So anyway, I went and got a job and a child minder and things started to look up. I would not only be able to leave Baby Bodros with the childminder to go get some exercise, but I would also be a bit more motivated, as I would be leaving the house everyday with a purpose – so much easier to then come back and do positive stuff when you have made it out the front door at least once a day.

My job? I work at McDonald’s. Yup, you heard! McDonald’s.  A bad career move? No – I actually don’t speak enough French, so it was a perfect way to learn French and get paid (French courses are about 1600 euro for a good one). Hard work? Yes! Very! Anyone who works in catering or who has worked will know/remember how tough it is on mind and body. Not only do you have to remember everything that everyone tells you all at once, but the cleaning part of it  – especially in fast food –  is hard freaking work! The beauty of it is though, as soon as I walk out of that door I am free. Plus I can now speak a lot better French than I did one month ago.

Have I done any exercise? Not a chance. I am so worn out by the time I get home that the biggest work out I do is ironing my uniform for the next day. Do I need any exercise? No way! My guns are like Schwarzenegger’s! I have never seen biceps so big on my body (probably not visible to the normal eye, but HUGE to me!) I have also kept the 5 lbs off I lost when I started work. I am a very happy woman!

Do I eat McDonald’s now? Not if I can help it. If I do eat there, I eat a plain salad and have a burger with it (just the meat) and I have the fruit (which is all probably dipped in chemicals, but no flare so far). I enjoy a nice coffee from there and a bottle of Evian to wash it all down. It works for me and although I am sometimes a little tortured by the smell of crushed M and M’s when I refill the Flurry dispenser, one look at the ingredients is enough to extinguish any temptation! As for the fries, the pain I experienced from eating just two fries a few months ago is reminder enough – I am never tempted!

So, whilst you lot are all, “Cross fit is the best”, I’m like,”Mcdonald’s has given me guns to be proud of!”

Long may it last!

A fortnight post-Clindamycin and Rifampicin

It has been two weeks since my last antibiotic pill. I am in remission. I did feel absolutely fantastic….then my stomach went a little crazy.

It started Wednesday evening and followed the next day. I was working and was a little worried, but managed to control it all until I got home. Then it really was bad! I was feeling pretty weak by then, as I had just been drinking chicken soup (hardly chicken soup – just hot water with an organic stock cube, as we have no homemade stock due to freezer fail – see earlier posts). I managed a trip to the pharmacy with the wee one and purchased some Immodium and some super expensive probiotic. I then dealt with two more days of gastric distress and working really hard, trying to placate Inner Hypochondriac who had completely written me off as a terminal IBS sufferer.

A few days later and I have some perspective. It turns our Inner Hypochondriac was wrong once again. In fact, everyone in the family had a dodgy tummy and we’d all had some sort of bug. On the plus side, I lost 5 pounds and I look fabulous😉

The Hidradenitis is behaving itself. There have been no flares. I still haven’t got my cooking mojo back. It is exacerbated by working and no hob/freezer, but it doesn’t mean we’re not eating amazingly tasty food, it just means I’m not being as creative, which is a shame. I have been mainly eating salads and basic proteins – fish, chicken, duck and steak. Steak hasn’t made me flare, which is strange, as it used to. It may be the fact we are buying it from a local butcher and it could be less pumped full of antibiotics etc. Who knows? I am also eating plenty of raw milk cheese – Gruyère, Comté and recently Saint Félicien – very stinky! Before my dodgy tummy, I was also eating a little bit of my organic homemade bread, made from spelt flour. I let it do a double rise, before I cook it and it doesn’t make me flare. I know I really shouldn’t eat bread, but occasionally I have felt the urge to eat it and as my work has been pretty physical, I’m not about to get stressed out about what I should and shouldn’t be eating on top of being physically tired. It has been fine if I just have a small amount and needless to say, I only ever eat the bread I make.

So far, so good. Generally being kind to myself. Generally working really hard. Generally loving life🙂