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Top Tips for Feeling Tip Top

April 5, 2016

As you will remember from my last post, I recently felt like my Crohns health had taken a bit of a nose dive. I panicked and began look for reasons and ways to blame myself for it. I recently read a great post from fellow IBD blogger Jenna Farmer, about the self blame game. It’s a common, unhealthy habit, grasping at your potential wrong-doings and reasoning everything, when some things really are sometimes beyond your control.

As the weeks went by and I continued eating well, my fatigue began to let up. I realised that perhaps, instead of losing the faith in my efforts thus far – I should consider that maybe my body was just fighting off something grotty that it previously wouldn’t have had to strength to handle? Instead of knocking me down with a full blown virus, perhaps it was just putting up a good fight, and my flare-like response was actually much milder because of all the positive steps I’d been taking for the last three months.

I realised that reframing this experience made me feel much calmer about it. Ditching the blame and anxiety and replacing them with praise for the efforts I had been making. Because we can never really know for sure where we would be without making those efforts.

In a bid to celebrate my conscious efforts towards staying well, I wanted to share my 7 top tips for helping you feel tip top, when living with a chronic illness. So here we go:

1 Just say no.

If you’re not feeling up to going out, going to that party, traipsing through town to meet someone or even getting dressed in those snazzy waist pinching trousers – just say no. Ta.

Your time is yours, and your healing will thank you for it. Stay at home, stick on your cosy joggers and spend time recuperating, feeling safe and guilt free because it feels nice to be true to what you want sometimes.

2 Get witch-crafty

Making your own natural remedies is not only rewarding for your self care, but super fun. So bubble up your cauldron and get brewing some magic potions. Here’s a few that I’m converted to:

Turmeric milk is a golden drink, is a great anti-inflammatory, and taken regularly can boost skin health, digestion and immune system. If taking it doesn’t appeal – just chuck a few sprinkles of turmeric powder in your smoothie or tea, turmeric is a magic medicine of nature and it’s cheap as chips.

Raw Garlic as an anti-viral. Mash a clove onto a spoon, cover in honey and gulp the whole thing down. Great to treat viruses, sore throats and thrush.

Coconut oil + beeswax mixed with a few drops of your favourite organic essential oil to create a relaxing temple balm. And here’s a round up of some great DIY lip balm ideas if you like to lube up those pucker pieces.

3 Blitz, blend & blast

Investing in a food processor or blender will open up a world of possibilities, and you can get some pretty well priced options now. Using one will help you boost your nutrient intake, and make quick fruit filled breakfasts instantly hassle free. I also love having one so that I can make sweet bites that don’t contain refined sugar, and so I can grind up nuts into tasty dessert bases and protein balls. I get a lot of sweet inspiration from my favourite raw blog ; This Rawsome Vegan Life

4 Share the load

Living with a chronic health condition isn’t easy alone, and if you want to make more mindful health choices – it can be hard to find a community online that’s supportive and not merely trying to sell you some faux cure. When I was diagnosed with Crohns, I couldn’t believe how many forums and message boards were full of despairing people, who accepted no responsibility for their every day choices and the additional impact that those choices may have on their condition. It made be feel hopeless and resigned to my disease and doomed to a future of sickness and surgery. It took a lot of effort to find my place, and my people. But once I found some like-minded thinkers – I’ve never felt so supported and empowered about my say in the matter. This facebook group has been my best discovery and these nutritionistas my good friends. But if what you’re looking for doesn’t exist – why not create it yourself? Something my tech hero Seb Tucknott recently created: IBD relief is an online platform for networking and sharing tips for conscious living and wellness with IBD, and he created it, simply because it didn’t exist before and was so badly needed. Let your chronic woes become your chronic will to change things.

5 Make Time

Wether it’s working a bit more part time, or giving up your Sunday afternoons for meal prep, yoga or meditation – you need to create some time in your schedule to help yourself feel good. It’s easy to say ‘I don’t have time’, especially if you have a family and a hectic work schedule – but finding time is all about prioritising you, at least once a week – see tip number 1 for a key hint to making way for you.

6 Become Interested & Invested

The whole reason I started this blog was because I decided that I had a lot more questions than I did answers about my condition. What better way to combat that helpless feeling than to enjoy the process of asking questions? Learn about your anatomy, about nutrition, seek alternative schools of thought to the mainstream. If you have more knowledge at your fingertips, you’re able to make informed choices and feel empowered to do so. Sadly a lot of our doctors aren’t really as invested in reading up on the latest environmental theories or research around our conditions, so they are rarely going to entertain any such conversations. They only discuss proven scientific research, which is primarily funded by pharmaceutical companies who unsurprisingly negate to explore any studies that consider environmental factors and less-medicated approaches. But that doesn’t mean you can’t do your own research eh?

7 Eliminate & Observe

Consider cutting out some known problem foods, like wheat, dairy, grains and refined sugars, and note the results. A great way to keep track of what you’re eating and the response is this impressive app MySymptoms which helped me easily note what I was eating, and any symptoms I experienced. It then produces a handy report, and graphs which help you notice any correlations. The reason I like it iss because you can easily input your foods and it also remembers your favourites so you needn’t type them in each time. You can even scan barcodes of some pre-packaged foods. You can also create your own symptom sliding scales. So I created one for my eczema severity, one for amount of blood in my stool, and even one for the weird blotch i’ve been getting on my face. It’s an excellent tool, and there’s nothing quite like it as far as i’ve discovered. Well worth the pennies.

These are just my top tips, but i’d love to hear yours. What would you add to this list?

Love Gutsy

Stranded on Hair Island

November 9, 2015

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A guest blog from Gutsy’s partner Aimee; on her experiences with alopecia areata:

Back in January my hair started to fall out. As you can imagine, I wasn’t best pleased; no one wants a mini bald island on the front of their hairline. After an inital freakout, Amanda kindly contacted her friend, who’s dad is a trichologist ; a scalp doctor. This wonderful man, over the next three months would become my saviour. I learnt more from him about my body and wellbeing than I’d ever cared to give thought to before.

My whole life, I’ve always been susceptible to patches of eczema. My brother too. It comes and goes, and I never gave any thought as to why it appears – always lumping it into the stress category. But there’s so much more to it than that. Alopecia actually goes hand in hand with eczema, allergies and asthma too. The latter, thankfully I don’t suffer with, but the other three are my body’s way of saying, ‘you’re doing something wrong Aimee’. What I learnt most from my mate’s dad (let’s call him Stephen, because that is his name) is that it’s all centred around the gut. My balance of gut flora was out; I was putting things into my body that upset the balance further, and my skin and hair were reacting as a result. This is commonly known as; an auto immune response.

Unsurprisingly, this period of time happened to be of great interest to my partner (you all know her as Gutsy; co-author of this blog) as we both came to the realisation that we shared auto immune issues. Granted they were based in different areas, but the principals were the same, and the root of the problems came from the same place; a cocktail of misplaced white blood cell behaviour and an environmental trigger or two; such as diet, anxiety or allergens. The difference is; Amanda’s disease is an invisible one – people don’t see the fatigue, the bleeding and multiple night time trips to the toilet. My responses; were much more noticeable – having brazen red skin and a reflective scalp are not easy things to hide. Perhaps all the more reason for my eagerness to see Stephen, and try anything he threw at me.

Thankfully, in him I found an inquisitive healer; someone who wanted to not only treat the effects, but find and analyse the cause. First we had a long chat – one that revealed that my recent carb heavy diet due to endless nights in hotel basement dungeons, working at corporate events – was not doing me any favours. He also told me to book a holiday, as he was sure that a hefty dose of vitamin D would really help. In asking more questions, we found out that my Auntie and Grandmother had suffered from alopecia back in the day too. * Faulty genes alert! *

Since booking a holiday wasn’t possible at that moment, we started with some herbal supplements; ginkgo and zinc. Adding to that, a slightly adjusted diet – spices, plain yoghurt, plenty of herbal teas, no dairy, no gluten or wheat. Pre-biotics were also on the menu. So that, in turn would sort out my gut imbalance and feed the good bacteria so they would multiply. After a few weeks of this, nothing much was happening, so we stepped the treatment it up a notch, and I started to add a small amount of steroid ointment to the area to calm the immune flare. Again, no effect, still a shiny bald island.

We then had another chat, and that was really the turning point in my recovery. He explained; ‘your white blood cells simply need distracting’. He sent me away with a pot of weird paste that smelt bad and irritated like a bitch. Luckily the paste dyed my scalp brown, so at least now, my island was blending in more. After applying this to my head for a few weeks, the area became insanely itchy. At this point I stopped and once recovered from the itch I re-applied the paste. This time it took only a day or two for the irritation to come back. Loe and behold, a few days later, I had my first sproutlings. How did it work? The white blood cells that were originally attacking my hair follicles had gone into full retreat – they were too distracted and now busy attacking this new stinky irritant instead. Add to this a short course of UVB light therapy to the area for some added repairing Vitamin D, and my cute hair seedlings were coming along nicely.

Stephen’s approach to my healing helped awaken and reaffirm our thoughts about Amanda’s condition, as well as my own. Long had we tried natural remedies to help alleviate the effects of Crohns, but this opened up a whole new world of thought. It also meant that we had a million more questions about drugs, causes, effects, genes, family history, pharmaceuticals and consultants. The list is endless, and that’s exactly why this blog is here. We realised that our cases although seen as vastly different issues, behave very similarly.

If you look at alternative medicine, anything can be healed. There are seemingly radical theories out there, that you can cure yourself of anything, even cancer, but if you look into this stuff and the thinking behind it; it’s fascinating.

If you can take anything from my example, it should be to question theories, question doctors, and most importantly; listen to your body’s little voice telling you that maybe somewhere along the line, you too may have got the balance slightly wrong.

– Aimee

Living With Crohns

Keeping The Faith

August 13, 2015

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Today’s episode if my life, rather perfectly resembled a surrealist painting of the ongoing feeling of being torn, between two worlds, two rocky paths, or two old quarrelsome friends who claim, to be right, in believing they can help heal my Crohn’s disease.

On one rather well respected side, we have the IBD doctors, the hospital and their medicines designed to treat the effects of my Crohns – a disease not fully understood; versus the alternative camp; dietary adjustments, healthy supplements, exercise and de-stressing to help treat the environmental factors that play, in my view, such a key part in staying well.

I think any reasonably intelligent IBD sufferer, or a sufferer of any chronic illness with a few healthy inquisitive cells will at some point find themselves querying the course of action suggested by their consultant.

For me, it’s been a conversation that plays out routinely every 6 months, every time I find myself flaring. My consultant has been insistent that I consider the biologic drug – Humira. A drug that although proven to help a lot of moderate Chronies like me, frankly terrifies me. Not only because I am a needle-phobic nincompoop and desperately fear jabbing my thigh flesh on a fortnightly cycle, but because it comes with some pretty sizeable warnings. Cancer; lymphoma being the prominent one. Aside from my more rational reasons behind refusing the drug – my emotional association with a drug like Humira has always felt like admitting defeat somehow, and instinctively (if I’m allowed to have those) it’s always just felt such a big decision, and the wrong one for me.

But today I found myself in an all too familiar position. I am currently going through a flare up, feeling desperate to resolve it; as feeling exhausted, pained and passing blood really does wreak havoc with your career and social life, not to mention your will to remain positive. Over the last 5 years, I have experimented with so many diet and lifestyle shake-ups that it’s hard to even know what has worked, and why if it did, it didn’t last.

Today I had a meeting with my new consultant. I changed hospitals as my last consultant’s Humira bashing agenda become tiresome, along with his regular cancellation of clinics to accommodate his voyages across the world. I was nervous to meet my new one, and spent the morning collecting all my hospital letters and notes for them. I found myself plotting a little chart to help me remember the timeline of illness and wellness over the past 5 years which had become a total blur. I wanted to be prepared, in case typically, they weren’t…

Surprisingly, she was everything I dreamed she might be. Thorough, interested in my case history, my life, my interests, even my feelings on the proposed drugs. And even better – more than willing to book me in for every kind of test going to get an accurate diagnostic picture on my current state of IBD health before making any treatment decisions. I went along with my mum, who was nodding along and practically danced out of the clinic.

Feeling positive, with blood forms, stool pots, and CT scan appointments in hand, we agreed to meet again in 6 weeks to review the possibility of Humira or Infliximab, something I have never before agreed to.

So why did I agree to it? Plotting my little graph today really helped me realise that I had lost 5 good years of my twenties, battling this monster of a misunderstood disease. I’ve been dragged through hospitals, swallowed thousands of steroids; hooked up to IV’s, put on excess weight, lost sudden masses of weight, paraded my embarrassing moon face around regularly, felt like a horrible angry person with a beard, and struggled to help employers understand or empathise with any of it. Not to mention all the stress I put my partner and our relationship through. I realised, this morning, that these regular flares had become my normalilty. Maybe it was time to give up on the alternatives, the paleo meal plans, the downward facing dogs and endless supplements and admit that it was time to ‘just get that Humira in your leg!’ as my last consultant so tactfully put it.

That should be the end of the story. But it wasn’t. In a strange turn of events, heading home from hospital – we found ourselves walking in a naturopathic chemist, looking for something iron based to help me with my anaemia and tiredness. The assistant suggested we join the queue to speak to a naturopath who, lucky for us – gives free advice on Wednesdays. I was feeling so weak after giving 11 phials of blood that I didn’t mind a little sit and wait.

So after ten minutes, a doddery Asian man in a stained white coat invites mum and I inside a tiny pre-fab booth, constructed out of old display boards. He asks us to sit down, in the stark but messy looking room complete with posters about impotence and heart disease plastered on the walls. He reaches for my arm and checks my blood pressure using a gadget, next to it’s open cardboard box that looks borrowed directly off the chemist shop shelf. After my BP reads fine, he takes my wrist to feel my pulse. This quiet man has said hardly any words until this moment, just some gestures to sit here, give my arm etc. While holding my wrist tightly between his thumb and forefinger, we pause. He confidently chirps ‘you had a shock when you were a young girl, that is the cause of this’.

Instantly I felt my eyes roll and I engulfed the room with a cynical sigh. Today I didn’t feel like being a vulnerable believer, I had completely lost the faith in these people and felt angry that I’d wasted all these years trying to believe I could heal myself.

But my mother pressed him; ‘a shock? How can it be, what do you mean…a shock?’.

‘Don’t get over-excited, let me explain’ he replied at an uncomfortably slow speed. He started drawing questionable diagrams, explaining that because my nervous system got a shock, the peristalsis in my gut wasn’t working correctly. And because of this I had rotten matter in my bowels and I wasn’t able to absorb energy effectively. He wrote a lengthy list of foods I should eat, and shouldn’t and then prescribed me a tonic consisting of all sorts of naturopathic remedies and capsules to take daily.

Looking over at my mum, her expression seemed to have changed from weary cynic, to thankful and converted as she later happily filled the basket to the tune of £86 worth of remedies. I insisted, she didn’t need to bother, and we could just leave. But she firmly asked me, ‘what do you have to lose? What’s one more try? If it doesn’t work, then you’re back at the hospital in 6 weeks anyway’. I couldn’t argue with that.

This all happened in one afternoon. The medical action plan by my consultant, and the naturopathic guru named Mr Mistry and his strict regime of supplements and diet. On the train home, laden with a hessian bag of remedies in one hand, and a pack of ‘Biologics and you’ leaflets stuffed in the other. I felt like the perfect illustration of a confused IBD patient.

And that I suppose is why I decided to write a blog like this one.

love Gutsy.