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 🙂
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!
So far – so good – the meal plan is working! It has been a success (with only one slip up – a last-minute fresh pizza when the day ran away from us) and I feel good. My Hidradenitis Suppurativa is well and truly behaving itself. I am still taking my antibiotics and have the odd nap here and there, but mostly I’m much better. The doctor has prescribed some steroid cream for my feet and they have healed nicely.
I did have a little flare earlier in the week. I was a little shocked (and reminded of the horror of this disease) and experienced some pain for the first time in what seems an age. I couldn’t work out what had happened (it wasn’t the pizza, which was later on in the week and incidentally didn’t cause any reaction), so had to do a little rethink about my food consumption this week.
I saw a friend do this the other day – he asked his girlfriend what she had eaten yesterday and the day before. As she sat thinking really hard, I asked him why he had asked her that. He told me it was a remedy for hiccups. Thinking so hard made them stop. This isn’t relevant, but apparently it works and everyday can be a school day, right?
Anyway, I had to think about what I’d eaten, which was fairly easy, as I written it all over Facebook and this blog. A was a little baffled, as it had all been whole foods and not much fruit. Then I had a thought. My supplements. Uh-oh. Rookie error. Checked my French probiotics and – bam! There it was! Saccharose. In my probiotics. All white, innocent and promising to heal my little tum tum, when actually the devious little beggars were running around my insides causing chaos! Now, I had taken a little peek at the ingredients and honestly? I thought saccharose was a sweetener. Straight up. Totally confused it with sucralose. I just thought to myself that I’d forgo a little chemical toxicity to get the benefits of the probiotic. Silly, silly me. Luckily, I had only started taking them the day before and since I’ve stopped, little flare/leak has totally healed.
There have been no sh*t storms this week – a few minor issues, like our upcoming holiday to the UK being delayed because the car is still in the garage, but on the whole a good week. Also, I have concluded that pure sugar= instant flare, but fresh pizza=no flare. I’m sure that I would have to explore this further and whilst I’m not about to go out and eat a ton of gluten/dairy/nightshade laden foods, I am happy that the odd slip with certain foods may not be the be all and end all for my HS.
Meal plan recipe tonight is the wild prawns on the BBQ – yummy!
I’m done messing with my diet (she says for the 17th day in a row). No, but seriously, I really need to stop using these antibiotics as a crutch and start clean-eating again. I am a month into my 10 week course of Clindamycin and Rifampicin and although taking antibiotics goes against everything I believe in, I have to say the results are amazing. I am barely leaking at all, and the persistent swelling has decreased so much so, that I can throw myself down into a seat and there is no pain. Nada. Zilch. Nothing. HEAVEN!!!
Excellent, you say, no need to write anymore blog! Actually, no. These tablets are like a holiday for me. A little respite from real life. They are toxic and have horrible side effects. They can cause liver disease. They make my tongue furry (which swilling my mouth out with apple cider vinegar has cured, by the way). They have brought back my peeling, dry, itchy skin on my feet. They make me need to poop – and it’s not a pretty picture. I have to eat loads of sauerkraut (which actually isn’t too bad). They make me tired, a little out of sorts.
Most of all, I feel the opposite of how I did when I started the autoimmune diet. I feel like I am poisoning my body instead of healing it (did I mention I was a drama queen?). I was trying to heal my leaky gut with all that lovely, nourishing, home-cooked good food and now I am attacking my insides with chemicals.
Such a dichotomy.
Whilst I’m not looking a gift-horse in the mouth (that’s a really weird idiom!), I am only on these tablets short-term. I am still anticipating that after my 10 weeks is up, I am only going to get some major remission going on by sticking to my autoimmune protocol diet. In the meantime, I want to take advantage of the healing that has happened. I want to keep those sinus tracts shrunk, or healed or whatever has happened to them. I want to wear my bikini again and agin. I want to wear mini-skirts all summer, without Micropore peeping out of the bottom. I want to enjoy the freedom of spending under 2 minutes in the bathroom, because I have no dressings to change. I want to have a go on a Space Hopper. I want to sit comfortably with my baby on my knees, without wincing when she wiggles. I want the whole, entire and wonderful healed-upness of my Hidradenitis Suppurativa to stay just the way it is.
Today I got busy. I went to
an amazing farmer’s market of organic goods Lidl and bought as much of the fresh produce as I could fit in the bags I was carrying (it’s in the ghetto and they don’t have baskets). Their organic range is CHEEEEAP! They also stock the cured ham that I eat. It lists only ham and salt as the two ingredients and it’s cheaper by at least 2 euro here than in any other local supermarket. The only other packaged item I bought from there was Perrier. I dodged the drug dealers on the way out and Mr B did the rest of the food shopping at Auchan – the actual, biggest supermarket I have ever seen. So big, I walked for about 5 minutes before I even reached the food section. So big, I think it may be bigger, even, than Sam’s Club in Slidell, Louisiana! Maybe not as big as a supermarket in Texas, though. I digress.
I made a meal plan for this week to keep me on track. We kicked off tonight with cod, marinated in a lime, garlic, coconut oil sauce with fresh parsley and basil, Himalayan pink salt and organic cracked black pepper. This was served with sautéed green beans, oyster mushrooms, onion and garlic and all cooked by the lovely Mr B!
De-li-cious! Made even more tasty, because I didn’t have to lift a finger to cook it!
For the rest of the week, main meals are as follows (not in any particular order):
- Easiest roast chicken ever – Instead of leeks, which we don’t have, we ‘ll be subbing courgettes in to this dish and serving it with salad. Who says roasties can’t be served up with a salad??
- Chicken and vegetable curry – using leftover chicken, homemade coconut milk, homemade curry paste (excluding paprika and chilli), ginger, garlic, onion, carrots and homemade chicken stock (I use this recipe, with frozen leftover peels and chicken bones). Served with cauliflower rice, fried with peas.
- Healthy Gluten-free Life’s Dutch Oven Pork – as featured on Nomnompaleo’s page. Love our Le Creuset Dutch Oven cocotte, which cooks food so evenly and keeps it moist. We’ll have that with sautéed broccoli, onion and garlic all fried in silky smooth organic coconut oil of course! Perhaps a side of salad, too.
- Large wild gamba, marinated in lime, garlic and ginger, seared on the griddle and served with my scrummy roasted sweet potatoes. And salad. And probably sauerkraut for me.
- Asian chicken thighs – again Michelle from Nomnompaleo’s recipe. What? Again? Yup. Each time I Googled the ingredients, hers was way up there and looked delicious, with only a few ingredients that I needed to remove to adapt for the autoimmune protocol. Served with salad.
- Sweet potato and prawn soup, which we’ve adapted from an Everyday Paleo recipe. We’ll have some leftover coconut milk and prawns (there are two kilos in the freezer and we’ll have to defrost the lot , so we’ll cook ’em all and throw some back in the freezer for this dish.
Et voila! That’s me all sorted for the week. I hope to all that is Holy and Mighty that there are no more sh*t storms this week and I manage to keep on track (and off the incredible Bordeaux wine).
Day one is done…..
8 days. 8 days of antibiotics and 8 days of eating clean. Supposedly.
I’m happy to say that I have only missed one dose of my antibiotics. Not happy because I’m intoxicating my lovely gut with these drugs and a missed dose means a health break for my insides. No, happy that with the chaos of moving out, I have managed to remember to take them so often. It helps that Mr B is on board and I get the odd gentle reminder to get my ass of the sofa at night and take them. If I’m going to trial this antibiotics thing, I’ve got to do it 100% otherwise, what is the point?
My update on the antibiotics…well, I have still got the unmentionable going on in (and then swiftly out of) my stomach, although it is only happening once a day, so it’s bearable. I have no gouty symptoms anymore, but what I do have is overwhelming tiredness. Like the type you get when having a flare (or a hangover). Just ridiculous I’m-gonna-lie-down-right-here-on-the-tiles type tiredness. Tiredness that makes my fuse reaaaaally short. The same as when you’re horomonal. That kind of tiredness. I’m hoping it’s yet another one of those symptoms that will gradually fade away, but until then I am having to be extra kind to myself, in order to achieve anything. Otherwise my Inner Perfectionist (she lives on the opposite side to my Inner Hypochondriac) keeps getting really cross that I am not getting my chores done, efficiently or at done all in some cases. I’m ignoring her and the Hypochondriac. Let them battle it out together. I’m just too tired to listen to either of them.
A new side-effect is yam-yams. This term may not be a familiar term to you, but you’ll see it makes true, onomatopoeic sense. Have you ever had a dry mouth from surgery, or from taking medication? When you are so dehydrated , your mouth feels like the inside of Ghandi’s flip-flop, in the desert, after he’s walked a few hundred miles? Well, yam-yams is the sound your mouth makes when you try to rehydrate it without actually drinking. When you suck your tongue and open and shut your mouth. Yam, yam, yam. This is what I have. Constantly. Despite drinking a fish pond of fluids daily. Still, I won’t die (really, Inner Hypochondriac, I really won’t.)
Then there’s my diet. Hmmm. I am mostly doing good. Lots of beautiful meals, but little creativity going on. Roast chicken or pork. Roasted vegetables. Pan-fried fish. Sautéed courgettes, garlic and onions. Roasted sweet potatoes. In cubes. In wedges. In bigger chunks. Lots of smooth coconut oil, lavished all over everything I cook. Lots of raw coconut. Tinned fish. Sauerkraut. No grains, bread, pasta, sweets, processed food. Ok, no processed foods apart from two or three. Dried apricots and wine. And a little cheese. I had one glass of beautiful, high-quality, red wine at a Wine and Cheese party Saturday night. You would think that I would have learnt my lesson after nearly dying the day before of all the side effects of my meds; instead I ignored the potential cirrhosis of the liver and sipped a lovely glass of Burgundy.
I am Bridget Jones. Of the diet world. I make poor choices, repeatedly.
To be fair, the wine didn’t cause me to flare, neither did the raw milk cheese, called Langres (delicious by the way and from a beautiful little Fromagerie, where 95% of their stock is cheese made from raw milk). Maybe this lulled me into a false sense of security.Then came the dried apricots….
Yesterday, I was baking for Ty’s school fair. My Sugar Dragon was mocking me, as it always does when I’m baking. How tough is it to wash your hands every time a bit of chocolate or cake mix touches your fingers? To put the dark chocolate-smeared spoon straight in the dishwasher, fighting every instinct to put it in your mouth?? So, I caved and had a few apricots. No big deal, I thought, I’m on killer antibiotics, so it should be all right…
WRONG! The apricots have the highest fructose content of anything in the house (apart from the dried figs – thank goodness I didn’t see those!). Fructose and anything high sugar causes me to flare. In fact there is so much fructose in those little, seemingly harmless, gooey balls of organic, dried fruit, that I would probably have been better off licking the dark chocolate off the spoon.
So, take antibiotics if you want. Or don’t, it really is an individual choice that may even change over time. However, if you are going to make one personal choice that helps you to heal, try to cut out the sugar. It does seem that sugar, along with heat and humidity, really does affect so many people’s Hidradenitis Suppurativa. It is not that easy, especially if you live with others who happen to exist in a world where school fairs demand cakes. Especially if you continue to feed your inner Sugar Dragon, instead of slaying it. But it is definitely worth it in the end.
Today’s conclusion. An autoimmune protocol diet (with no added sugar) definitely works and hopefully Bridget Jones will learn to accept this very soon.
Day 8 and the jury is still out on the antibiotics. Now, where did I put my pint of water? Yam, yam, yam……
I am heading back to the UK for a surprise visit for a close friend’s hen weekend. I am so excited about the holiday and seeing friends and family, but extremely apprehensive. I guess travelling alone with a 22 month old baby would be a scary enough prospect for anyone, but for me that is not the biggest issue. I have different concerns.
I will not have my own food and limited access to kitchens for the first couple of days. After a day of travelling on Tuesday, we will be staying at a friend’s house in Hassock’s for one night and will be visiting in London the following day. I won’t be at Mum’s until Wednesday evening. I’m still struggling to come to terms with the limited foods that I can eat. As I so often fall off the wagon, I feel it’s a little hypocritical of me to start demanding that people make allowances for my diet. On the other hand, I should have the right to choose when I want to fall off my wagon – shouldn’t I? Even 3 months on, I’m still not sure how to deal with my dietary changes in new situations. In any case, I’ve packed a whole loads of fruit for the trip and plan on buying bags of washed salad for my lunch on Wednesday. My lovely, accommodating friend has reassured me that my food needs are not too tricky, so Tuesday evening should be fine, too.
My other issues are a bit more icky. Dressings and washable pads. I’ll strap on some Mepilex, gauze and Micropore before I leave, and at my first loo break, I’ll just ditch them. If I don’t strap up and I have to walk for some distance, I get sore much quicker. However, with a suitcase, baby and baby-carrier, I don’t think I’ll quite manage to replace the dressings on my journey. What will I do with my washable pads (yes, I have made my own home-made sanitary pads and they are much more comfortable than the plasticky disposables)? I think I have a waterproof zip bag that I can use – but who wants to be carrying dirty pads around with them?! After weighing it up, I figure it is just another thing I should get over. I just need to be prepared when I go change the pads, and have my little bag ready.
I’m disappointed that I’m already flaring from my last holiday. I so wanted to be flare-free and hoped to indulge a little more this time. With a camping trip planned for the weekend, with camping food and cocktails, I really wanted some leeway. On the other hand, I’m also disappointed that I’m completely off track. I so wanted to be disciplined with this. I wanted to heal my leaky gut, be flare-free, head into remission and live a pain-free life. Instead I am on a different path, but one that means I am living and enjoying life. I am not ensconced in my diet and I am not monitoring every little change in my skin. I am socialising, laughing, having fun and eating fun foods. I am, for much of the time, pretending I haven’t got this disease. My flares are much worse, but I know that after these holidays, I will back to reality. HS doesn’t let you forget for long.