Making a Meal of It

When I first was diagnosed with dermatomyositis, a few friends mentioned diet to me. I’ve always been quite diet aware as I was a vegetarian for 30 years – you’ll see why I say, ‘was’, soon.

The NHS are wonderful in many ways, but holistic advise isn’t really forthcoming for a lot of diseases, this being one of them. If you have coeliac and often for cancer sufferers, you will get offered the advise of a dietician, but in this case, it wasn’t seen as connected.

It seems that the connection between autoimmune disease and diet is highly contentious in fact, I think more so in the UK than in the USA, but I’ll explore this in another post.

So, in the end I paid for a private consultation with a dietician – fortunate for me that I could afford to do this, not everyone can. It cost me £40 per session and I had 2 sessions, by Sykpe, as the dietician is based in London. Isn’t Skype video a wonderful thing.

Fleur, the dietician, wanted me to eat meat to help with my muscle replacement after the effects of dermatomyositis: I just can’t. I became a vegetarian as a quiet protest against the mistreatment of animals in factory farms, not for health reasons, so I just couldn’t bring myself to change that philosophy. After much debate, I agreed to eat fish. So with that in mind, she gave me this advise:

1. Eat eggs and fish every day

2. Eat root vegetables as much as possible, for example beetroot, carrots, parsnips, etc.

3. Eat green leafy vegetables as much as possible

4. Cut out Gluten (I already have, that’s another story)

5. Cut out dairy and lactose (see later)

6. Reduce my eating of grains to a minimum (I admit I like to odd slice of gluten free bread…sorry Fleur!)

7. Eat nuts like walnuts

8. Reduce sugars like sucrose and fructose as much as possible

She also wanted me to take a supplement called Lactoferrin which is found in mothers milk and helps to boost the immune system.

I also have to take high dose vitamin D, prescribed through my doctor, as my vitamin D levels are very low, as well as the usual Natecal (calcium and vitamin D tablets you take to counter the steroid affects on your bones).

I’ve also cut out caffeine as much as possible and alcohol (Waaaaaaaaa!!!!!!)

So how did I get on, 2 months down the line…

Well as Im sure a lot of you know, making dietary changes, especially ones that involve eating healthy stuff is never easy. I did however, give it a go and continue to mostly follow Fleur’s mantra.

I do eat high cocoa solid chocolate and have the odd treat of a small Green and Blacks dark chocolate ice cream, mmmmm chocolate ice cream mmmmmm.

The only one I’m really struggling with is cutting out dairy, because every morning I have a really delicious breakfast which I can’t bear to give up. My breakfast, shown below, is gluten free muesli (well actually  a mix of two different ones) with milk (not much though!) and some organic coconut yogurt, with berries of several types on the top…mmm…mmm…mmm how can i give that up!!!

Mmmmmm Brekkie

I’m actually pretty good at controlling my diet but I have slipped a little bit with the odd slice of gluten free bread – I find it helps with the nausea caused by the methotrexate.

So has it worked?

Well it’s early days: I feel very ill still. But then maybe if I was eating lots of gluten and sugary foods, etc. I’d be a lot worse. I won’t take the risk of exacerbating this illness and so I will persevere, but with the odd fall off the wagon.

How do you do a comparison for an experiment like this? I don’t have a control group to check results against. All I can do is assume this is the best way forward and stick with it. The alternative would be to start eating badly and see what happens  – no thanks!

In the end I can say I eat pretty well, but I am finding this diet expensive. I am in a position where I can afford it, but others would struggle.

I’ll write some more posts on diet and feeding because there are considerations when you have this disease that may not be obvious to dieticians.

UPDATE:

I found some lactose fee milk…woohoooooo, so I’m using that instead of the real stuff, it’s fine, it tastes the same.

Superman, Oh Superman, I know How You feel, Oh Darling Man

It’s often difficult to get across to you healthy folks (I’m so jealous of you all) about what it feels like to have this disease. Just to give you a feel for what it’s like to have  extreme exhaustion and weakness and pain, that means that even the most simplest of  little outings can leave you drained and in pain for days.

And then it hit me, of course! It’s what Superman must feel like when he is presented with kryptonite – not that I was ever exactly super woman, of course, but you get the idea.

I feel like I’m dragging a lump of kryptonite around with me.

Superman, oh Superman, I know how you feel, oh darling man

In the beginning…

I thought it might be time to let you all know how I ended up in this mess in the first place. It took a while to get here, so bear with me.

About 6 months before I was officially diagnosed I started to get a rash: On my face at first, across my nose and cheeks. Not long afterwards I started to get a disc shaped rash on the right hand side of my belly (that’s stomach for you non northern UK’ers).

It’s probably worth pointing out my lifestyle at this point.

I work in software strategy for a small company and I travel a lot. Mainly in the UK, but also abroad: North America, Europe and Australia. The previous 12 months I’d been to all of those places, several times. The reason I mention it, is because I do wonder if I picked up some virus on a plane, as there is a possibility that the Epstein Barr virus can cause dermatomyositis and I had very swollen glands behind my ears for months that year (I haven’t a clue about medicine, but it’s something I noticed).

After the second rash occurrence happened, I went to the doctors to ask about it. I was told I had Rosacea on the face and given a cream to use. As you can guess, it didn’t help. The send rash on the belly was dismissed as just a little eczema (again various creams didn’t even touch it).

The rash progressed. It started to form a symmetrical pattern on my upper torso. Within a couple of months it had spread to the other side of my belly, mimicking the original almost exactly, then around and up my back, onto my shoulders. It looked very bad, sore too, but it wasn’t particularly sore, or itchy.

Here’s a little look at it (sorry for the gruesome shot)

Quite honestly, the rash wasn’t anything other than a irritation (literally). I went back and forth to the doctors, had various diagnoses including, my jeans rubbing my skin and mites…

The mistake I made was that I was starting to get other symptoms and didn’t connect them to the rash. Shortness of breath and a dry cough came around 4 months after the original rash. Muscle weakness around the same time. I didn’t mention these to the doctors until it became so noticeable that I could hardly walk.

The muscle weakness came on over about a 6 week period. I flew to Australia around 3-4 months after the first rash appeared and about a week after I noticed the hand rash starting – this is one of the diagnostics for dermatomyositis the term used is ‘Grotten’s Papules‘ (you can’t see the cuticles in this image but they show tiny bleeding) – here’s what my hands looked like:

When I got to Australia, the next day I had awful pains in my hips and legs, I could hardly move them. I thought it was just the flight, but, I’d flown business class and quite honestly it’s like a holiday in the sky and I’ve never had that reaction before. Still I just dismissed it and got on with work.

When I got back, within 4 weeks I could hardly walk with joint and muscle pain: I literally hobbled.

My dry cough became more frequent, the pain more intense, the weakness in my legs moved into my arms and finally my neck/head/scalp. But probably, for me anyway, the sheer overwhelming exhaustion was the most awful thing to cope with, I was sleeping up to 18 hours a day. It made work very difficult.

My GP thought it might be Lupus and referred me to a dermatologist.

By the time I got that referral – 6 months after the first signs, I was in a very bad way.

Now this is where the NHS (National Health Service) isn’t so good. When my appointment came though, the earliest I could be seen was 8 weeks later. I knew in my heart, soul and mind that leaving this 8 weeks would be a serious mistake (I just knew this was serious). So, I spent £150 and went as a private patient to see a dermatologist.

The dermatologist took one look at my hands and with a smile of recognition said…”I know what you’ve got…it’s dermatomyositis”…except all I heard was, “I know what you’ve got…its blah, blah, blah, sitis”

Absolute BEST £150 Ive ever spent.

He immediately put me back into the NHS system as a urgent case and within 2 days I was admitted to hospital. And thats another story…where the NHS shines…

Drug Pushing

As to pushing drugs, well, not exactly, tapering drugs is the topic of discussion today. Well, the prednisolone dosage reduction, seemed to make me very unwell and caused (seemingly again) some of the symptoms to return. In fact I noticed another rash site has popped up as well as the face.

Interestingly, the rash appearance is taking the same pattern as when I first started. Face first, then torso…my hands were the final place it appeared, they still seem to be improving. Anyway, before I bore you witless with my symptom observations, I just wanted to say that upping the dose has made me feel a lot better. My head pain is much less and I can walk much more easily and I’ve even started to do some arm exercises again. But of course I can’t stay on this dose, not unless I want to loose all of the calcium in my bones. So what to do…I’ll should see my consultant next week when he’s back and I’m sure he’ll make me go down again, or change the drug combination, or something like that.

The trouble with autoimmune diseases that are rare, is that they haven’t got much funding, which means not a lot of research – well I suppose it’s also problematic as there aren’t as many patients to use in studies. There are however, a load of support groups forming for these types of disease on Facebook and other sites like Inspire, oh the wonders of social media (I say that with a certain amount of cynicism).

Now, Im not a doctor, but I am a trained scientist and I do know that although the information on such sites may be deemed to be uncontrolled data, or whatever, it could also potentially open up avenues of information and certainly potential candidates for studies. People on these sites so want research to be carried out – it’s a great reservoir of case studies for any doctor looking into this area of disease. Doctors of the world, don’t be shy, come along and check out what were saying about what you…sometimes it’s nice 😉

Here’s three examples of those support groups:

Facebook Dermatomyositis

Inspire

UK Dermatomyositis Support Group

Update: It’s been 3 days since I’ve taken the upped dosage now and the rash hasn’t got any worse and my scalp pain is still there, but not as bad. I’ve got more energy. But my gammy leg, well thats another story because its still troubling me when I use it, even the most moderate of uses – come on leg, you’re supposed to work! I wrote an Ode to my gamy leg while I lay awake last night, I’ll write it up in a later post at some point.

I’m Not My Disease and My Disease is Not Me…But

There’s a lot of wisdom out there about how to cope with having a serious illness. Many people try to use positive thinking to cope with the situation. I do that myself, in many ways I’ve never been more positive. But in the end, what’s happened has happened and I cannot ignore the way this illness has changed my life. I can only hope that it won’t be a significant change over time and that, eventually, the drugs and dietary changes (more on that in another post) will work their magic and I’ll get some normality back.

I’m not my disease, but it has had a significant effect on me.

It took me about 6 months to get the diagnosis of dermatomyositis a rare autoimmune disease. It took another week to learn how to pronounce it.

I don’t know how true this is for everyone, but when I first found out what I had, I had an almost religious reaction to it. It was a little like that episode of The Simpsons where Mr Burns comes out of the woods wearing his hospital gown saying, “I bring you love, I come in peace”. I felt incredibly calm. I suppose it was the shock.

At the time I had to have a million tests for an underlying cause, as cancer is often the reason behind the disease. I was taken into hospital for 10 days and prodded and poked and scanned to within an inch of my life (the NHS is a wonderful thing). Thankfully it wasn’t cancer, probably never know the cause, they think Epstein Barr virus may be a cause: Oh, but apparently, cancer risk is increased with dermatomyositis (lets call it DM from now on) – joy of joys.

I think it was the whole surreal nature of the situation, suddenly being thrust into the depths of the National Health Service’s best endeavours. Not really understanding what is happening. It being a rare disease, not really being able to find out that much about it. Your mind doesn’t switch off so much as, goes on holiday.

I started having amazing dreams. In one I was standing in a very large glassed area, looking out over the most vivid and beautiful and massive vista, of enormous trees and beautiful plants and feeling a sense of overwhelming awe and wellbeing. I woke up thinking that I’d seen a vision of heaven. Sometimes the mind can be kind.

The ‘religious’ experience and sereneness has worn off now and I’m back to reality with a major BUMP!

I will tell you of my day-to-day experiences, with the disease, with the UK’s NHS system (both good and bad) and with how coping isn’t just about the physical side of things, it’s about the emotional and the practical – but then if you’re reading this you may already know that and we’d love you to join in the discourse.

We are not our diseases, but they are part of who we are and we need to recognise that to put them in their place.

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