Day 114

Not a huge amount has changed since my last post, but what has been on my mind this week is confidence. This skin thing has affected my self-esteem massively… more than I expected. I presumed that once my skin started to clear up, I would always appreciate what I had and love what looked back at me in the mirror… I mean, anything has got to be better than oozy, crust face Mel, surely!?

But no, I am traumatised. I always feel like I am on a verge of a panic attack, my breathing is shallow, my mind is racing 100 miles an hour and I am self-conscious that everything I do will cause a flare… I keep it to myself a lot as I think people will think I am going mad.

Everyday things like eating, washing clothes, cleaning, showering and dressing myself have become a battle.  Every time I eat something slightly different, I worry. Every time I wear freshly washed clothes and I itch, I worry. Material that’s on my skin that isn’t 100% cotton, I worry (My poor clothes haven’t been appreciated in months!). I am even terrified to have a shower!!! I do bathe, don’t worry… but the water hitting my skin used to make me scream out in pain… I am literally terrified.

The biggest thing that has made me really nervous and panicky the last few weeks is clothing. I haven’t worn anything that has shown my arms since maybe early December?? Even at work I wear a long-sleeved cotton shirt under my tunic. I am literally terrified to wear a t-shirt.

The reason I am getting panicky now is because I am starting to get hot. My job is physical… I am starting to sweat in all my layers. Sweat makes eczema worse.  I am going to Madrid next week and I am too busy worrying about wearing t-shirts to get excited! I feel comfortable in my long sleeved t-shirts; they are hiding most of my scars (so less people comment). I also feel protected from tearing my arms apart if I get an itch. I did something today that for most people is nothing but for me is huge. I went to work and wore my clinic tunic without my long sleeved top on and I was ok… only one patient mentioned my skin and that was because last time she saw me, I was at my worst.

12987948_10153999816975499_1822896322_n (1)
Terrible quality photo but you can see my arm!.

When you are desperate you will try anything, I am getting help with my self-esteem issues and I am trying new therapies that I previously would have completely disregarded. I tried pranic healing. The idea being that negative energies can represent themselves physically and pranic healers calm the frequencies of the body by removing energies.

I lay on her bed, no idea what was about to happen… Lavender was being sprayed and she sweeped her arms next to me (not touching!) whilst she held a crystal. I was thinking… what am I doing here??
All of a sudden my left side went completely dead and I felt this sucking, releasing feeling leave my leg…. What the hell!!!???

I am off to go buy a crystal….

Advertisements

Day 92

pic

This condition is so ******* frustrating!!! I am back on my strict diet and I thought my symptoms would start to die down but NO! The human body is so complicated, I feel like I am going round in circles sometimes. I have barely slept the last 2 nights and this morning I woke up with my eczema all over my back again (can’t really see it in my photo unfortunately).

OK, so I officially know the fact that I am intolerant to my own body’s natural process of releasing histamine… Great… but surely being super good would reduce my symptoms, I can’t be going through a healing crisis again can I!? I hate not knowipic2ng my triggers… it’s been a 2 year battle trying to find them!

I was starting to lose confidence and hope with Dr Aron’s Regime this morning, as I wait for my next batch of cream to try… Some respond and completely clear rapidly, but here I am still with rashes all over me, still itching like crazy. I spoke to a few other adult patients of his this morning and I am feeling better now… flares happen and I am not the only one this has happened too… This bug is bugger to kill (excuse my terrible pun)!

Something that has been on my mind a lot this week, which I really want to talk about is chronic pain conditions and people suffering from invisible conditions such as chronic fatigue or mental health. I am in the pain business… My clients all come to see me to get pain relief. Some of my clients have conditions like Fibromyalgia, Multiple Sclerosis, Arthritis or other long term pain conditions, none of which are curable… they are in constant pain every day.

I’ve spoken a few times with some of my fibro patients about daily life and one of their biggest battles is gaining peoples understanding. You can’t see their condition looking at them… it doesn’t mean they aren’t suffering. In a lot of conditions, fatigue is one of the most profound symptoms. Fatigue isn’t just being a bit tired after a long day… it’s struggling to get out of bed and get dressed as you’re exhausted, it is having to conserve your energy all day, if you know you have to go out later in the day… One of my fibro patients in her 20’s mentioned that she has to take a wheelchair on a day out as she knows she won’t cope otherwise and only then are people more understanding as she is sat in a wheelchair!

This concept of invisible illness and people’s perceptions have felt close to home recently… When my face improved and looked normal again, all of a sudden people said “Glad you are better and back to normal.”  If only they knew what was going on underneath my clothes and under my skin. Overall my condition is generally visible… people have been lovely and so sympathetic (albeit horrified!). I am not after sympathy, I just want people to think… just because you can’t see a problem, doesn’t mean there isn’t a problem.

Day 85… Long, but hopefully interesting!

IMG_0251.JPG

So after my epic binge, which actually ended up lasting a few weeks, I realised I need to get back on track! I have slightly plateaued again, if anything, I am slightly worse… whether this is diet related, I do not know? Dr Aron’s compound cream can take a while, so I am not losing hope… I am just fed up of being in pain! It is even in my scalp now. A lot of people have asked me to write about my diet and supplements… maybe writing will motivate me again!

I started my eating plan back in December when I consulted a nutritionist. He took such a detailed case history, that I think he knows me better than I know myself. I would never have considered dental fillings to be important information in my health journey!

Mark (My nutritionist) believes I have gut dysbiosis… which is basically a microbial imbalance in my gut.. too much bad bacteria and not enough good stuff. Hippocrates said that “All disease begins in the gut…” Makes sense really…The bacteria in your digestive system has the capability of affecting hormones, vitamin and mineral absorbency and production, immune response and your ability to eliminate toxins.

So in other words my kidneys and liver are struggling. They are overtaxed with the amount of chemicals and toxins that need to go through my system, that they are expelling toxins through other routes like my skin, for others it may be via the lungs, stools or urine. I  basically had to reduce my toxic load, so I started using natural washing detergents, cleaning products and stopped putting chemicals onto my hair, skin and nails and in terms of food I needed to cut out all preservatives, food colourings, fertilisers, pesticides and foods with heavy metals (such as farmed fish)… so what was left was organic vegetables, fruits, nuts and meat as long as they aren’t farmed or processed. That’s about it… Yey.

I also had a number of tests done… as the more information you know the better! The first thing I had tested were my Vitamin D levels. Vit D is vital for regulating cell growth, neuro-muscular and immune function, mood and it also helps reduce inflammation. We naturally get vitamin D from the sun, so unfortunately a very high percentage of us in northern Europe are deficient… guess what, that’s me!

I then did a home stool test (I had to laugh when the DHL man came to pick up my parcel of poo!). The test was rather complicated, but importantly it showed I had a parasite called Blastocystis Hominis. Amazingly it is extremely common, but in some people it is not active… It is linked with Skin and Gastro-intestinal problems!

So I started the diet and went through the “healing crisis” and in January, I had a month review with Mark. He was surprised I hadn’t made huge improvements. In my opinion, I think this is because of TSW… I hadn’t just cut food out; I had cut steroids completely. We decided then to eliminate High Histamine foods out… Even less food I can eat.

Histamine foods include (some of which I had already eliminated): Alcohol, Pickled or canned foods, processed foods, cheese, smoked meats, shellfish, beans and pulses, cashew and walnuts, chocolate, vinegar, salty snacks, citric fruits, papaya, tomatoes, wheat germ and food additives.  If you are considering this diet then look here: (http://www.histamineintolerance.org.uk/about/the-food-diary/the-food-list/).

I confirmed histamine intolerance with a blood test and with research it all made sense.. I had so many of the symptoms, such as; Diarrhoea, flatulence (I’ll get them out the way first), stomach cramps, headaches and migraines, dizziness, runny nose and weepy eyes, extreme tiredness, itchiness and eczema, asthma, severe period pains, chills, low blood pressure, lack of concentration and sleep disorders.

So what is histamine intolerance? It is the body’s inability to break down histamine sufficiently. Histamine is a compound which we all release in response to injury, allergic and inflammatory reactions.  I therefore don’t produce enough of an enzyme called Diamine Oxidase (DAO) which breaks down histamine. Mark explained it to me like a bucket with holes. Most people have a bucket with enough holes in the bottom (representing the enzyme DAO), that when you pour water (Histamine) into the bucket, it never overflows… the enzyme is breaking histamine down efficiently so we don’t get a response. In histamine intolerance… there aren’t enough holes, so water overflows… The overflow is the allergic and inflammatory responses.

So lesson learnt… I need to get back on my diet as I can see that my symptoms have worsened. I wish I could see the future benefit of the diet more clearly,  rather than the current suffering as one day I might not have any of these problems!!

For those interested… here is a list of the supplements I am taking (More to come). Please get advice first though!

  • Vitamin C (Altrient C): Helps break down histamine
  • Organic Turmeric (Viridian): Natural anti-inflammatory
  • Milk Thistle (A Vogel): Liver and detoxification support
  • Artichoke drops (A Vogel): Liver and detoxification support
  • Saccharomyces Boulardii (Cytoplan): Probiotic yeast- rebalance microflora and help eradicate blastocystis hominis
  • Vitamin D3 drops (Nutri Advanced): Vitamin D
  • Quercetin 300 (Allergy research): Natural Antihistamine
  • Multivitamin (Cytoplan): “Food state” Multivitamin and mineral supplementt
  • Chromium (Bodybio): Helps reduce cravings
  • Acidophilus plus (Cytoplan): Dairy, Gluten and Wheat free pro-biotic
  • Berberine & Grapefruit Seed Formula (NutriAdvanced): Herbal formula to rebalance micro-flora and help eradicate blastocystis hominis
  • Methyl Guard (Thorne): Active form of B12, folate and B6 and trimethylglycine to support proper methylation and reduce histamine intolerance.
  • Intenzyme Forte (Biotics): Digestive enzyme to ensure proper breakdown of food.
  • Parent Essential Oils (Yes): Essential as you can only source from food: Omega 3&6

Day 73

I am now day 10 into Dr Aron’s regime and overall I am a lot happier than I was, last weekend I felt more like myself than I have in months. It was a nice feeling. Because I felt better, I treated myself, something I am unfortunately now regretting!

I just felt like I haven’t had a “treat” in ages. I love exercising and I haven’t been able to do that since December. My social life has been at a low, due to anxiety and the feeling of needing to be near a bath and all my lotions and potions. But MY thing is food. I LOVE food. I have been so so strict with my diet for months. I hadn’t eaten sugar, carbs or anything naughty in fact, since before Christmas.Yes, I had NO naughty food over Christmas!!!  So I binged, and I mean binged.

No joke… I ate all my Christmas chocolate, Prosecco, fish and chips, cheese, ice cream, sweets, pizza, pasta… I loved every mouthful, but now I feel like crap.

My skin has worsened again. The itchiness has worsened again. My sleepless nights are back again.

I lost so much weight on this diet and now I am BLOATED.. Food is so clearly a trigger for me. I just still don’t know what food in particular. But now I have tasted the sweet taste of chocolate again, I am finding it so hard to get back onto the restricted diet… Anyone that says salad is their favourite meal is lying.

 

Looking at the positives though,  Yes I was expecting miracles, but my face is 90% better, it no longer hurts to open my mouth or turn my neck and I no longer look sunburnt!! A lot of the open sores all over me have calmed down and now it is just red spots. An added bonus is that my GP surprisingly is on board with this treatment and has prescribed me the creams to mix myself, which will save me hundreds of £££…  I am thrilled, as money has been another stress through all of this.

It is just my arms… they still burn. I know they are going to take longer to heal, especially as I wash my hands so much with work. I think itching has almost become a habit!

“It is health that is real wealth, not gold or silver”

 

 

Day 65

IMG_0224
After just 48 hours

Since my last post a lot has changed. I was really torn as of which way to go in terms of my treatment. I could continue this hell for months- years knowing for sure my skin would be a lot better or I could try a treatment that uses the dreaded creams but potentially get better in days-weeks?

On Tuesday I usually only work a half day, but I had no clients booked in, so I sat at home all day. I get anxious about leaving the house, so I stay in. My problem is that when I am on my own, I get depressed, my mind goes on tangents and I have really dark thoughts. That night, Shaun came home from work and I took it out on him. That’s when I realised that I wasn’t the only one battling this. Yes, I am the one with the symptoms, but my family and loved ones are also suffering. Something had to change.

I had my email consultation on Tuesday and my worries were explained rationally. He recommended I did more reading first and look on the Dr Aron facebook groups and if I wanted to try his cream, my prescription has been sent and ready waiting for me.

So I looked on the facebook groups and straight away I saw a difference from the TSW groups, It was a wave of positivity and testimonials. The TSW groups have helped keep my spirits up and given great advice to me over the last 2 months and I am so thankful for that, but it just so happened that at the time another girl was enquiring about Dr Aron after someone contacted her… just like me. The responses were,”You will be thrown out of this facebook group if you go with Dr Aron” or “People who contact you about Dr Aron are vicious and trying everything they can to sell you to his regime.” First I thought, “Wow, that is bitchy” followed by, “Maybe these people are actually trying to help you!!?” I respect that people don’t want to use topical steroids and do it the natural way, it is their decision,  but is the bitchiness really necessary??

So after one heck of a day, I decided to try the Dr Aron Regime. My cream came on Wednesday and I am currently on day 3. I have already seen a huge improvement.

Yes my skin feels horrible, it is as dry as a bone and flaking like crazy, but this was expected. The itchiness hasn’t reduced, but I think that is because it is so dry. I tell you what has changed… I am no longer bright red, I am not in constant pain and for the first time in 2-3 months, I have slept 2 full nights in a row.

You put the cream on so sparingly and it has such a small amount of medication in it that I am no longer worried. My skin is finally getting the chance to heal.

I am hopeful.

IMG_0227
After just 48 hours

 

 

Day 61

So after I posted my last blog post, I was contacted on Twitter by a girl who had been in exactly the same position as me. I read her blog and she even looked the same as me, red and swollen. She and her 2 children had followed the “Dr Aron Regime,” which until now I had read very little about.

The reason I previously discounted his treatment, was because it involves using Topical Steroids (TS), so I immediately looked away ,as unsurprisingly I am scared to death of putting it on my skin again as they caused this grief in the first place. I wrote back and forth with this girl and she showed me the changes to her skin in just 3 days…

So I thought I would do more research and to be honest, I am now completely torn as to what to do. Dr Aron believes that it is the mis-use of TS that causes RSS. TS have been used for years in the treatment of skin conditions and so shouldn’t be discounted. He thinks that using a safe dose of TS and combining that with a antibiotic cream, we can slowly and safely ween of TS and reduce the horrible TSW symptoms.

I thought about it all day, but ultimately I preferred to do it the natural way through TSW as if it doesn’t work, will I then be back at square 1??

But then…  I broke down in tears on Friday night, (exhaustion of no sleep, combined with constant pain and no massive improvement to my hands) and I booked a consultation with Dr Aron. Having slept on it, I wish I hadn’t rushed into it, but I am still going to have a consultation,even if its to find out more details.

In the mean time, while I wait for my appointment.. I have decided to try a natural antibiotic in the forms of Manuka Honey, to see if that improves my skin in the short term. Apparently Manuka honey can wipe out the most stubborn of bacteria by destroying their cell walls.

On first application…  My god does it burn when you put it on… Is it good or bad??

We shall see….

Day 56

So the last week has been a bit up and down. I really flared last week, there were times where my skin was as bad as the beginning of my TSW journey, but since then it has been a little bit better. Just a little.

I don’t really know what has

IMG_0219
A little red and swollen and I forgot to tell you.. I’m losing all my eyebrows!

changed but over the last month, I have been using a really thick emollient called “Epaderm,” I tried all sorts of natural oils but nothing was settling it. Epaderm was the only thing that settled my skin. All of a sudden my body seems to be rejecting it. I put it on and then an hour or so later, I am scratching it off… Is it because my skin is healing?

I have done all sorts of research and have been reading about “Moisturiser Withdrawal (MW).” So basically not putting any moisturisers on at all. The idea being that it allows your skin to learn to produce its own natural oils rather than creating a “fake” humid environment with moisturisers, in which then your body stops producing its own oils. MW is supposed to heal RSS quicker, but it involves 2-4 weeks of extreme pain. My skin would go tight as anything, crack and cut open and shed skin like crazy, but after those few weeks my skin will be a lot better off. It makes sense really… I felt Shaun’s skin (My boyfriend) the other day, he never moisturises and his skin is soft! Why are women in particular almost trained by the media that we need to moisturise everyday!?

Anyway, as I have to work (and with the public), I am not going to start it just yet, but I am going to slowly ween myself off moisturiser. Not apply it as often and use less dense creams. I can’t afford to take time off work at the moment and not up for enduring extreme pain again right now.

But on a lighter note… I had a near normal moment today. As I cannot shower at the moment, I have been bathing 3-4 times a day. I HATE baths… but not today.

With RSS it is an art form to create the perfect bath… Too hot and it exacerbates the pain and Too cold… Well why would you want a cold bath!? Today I managed to get the perfect temperature. Bonus! The main reason I hate baths is that you are just sat there bored, looking at your naked, red, wounded and unflattering self, today I switched the light off! Ingenious… I also blasted out the music! I had a great time in the bath today!

I hope the neighbours didn’t hear my singing. 🙂