Making a Meal of It

August 28, 2012 § 2 Comments

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.


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

August 27, 2012 § 8 Comments

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

An Email to Suz

August 26, 2012 § 3 Comments

Hi Suz,

It’s Sunday evening now in OZ and I know that tomorrow is your first day of chemotherapy.

I just wanted to write to say that I’ll be there with you through that, holding your hand, from 10,000 miles away (I’ve got very long arms).

You’ll get through it and there’ll be some more to do, but in the end you’ll come out of this as a well person, ready to take on the world, just like you did before.

You are such a strong and kind and loving woman, I’m so glad we met and just wish I could be there with you tomorrow to hold your hand for real.

I’ll be thinking of you

with love as always


p.s. hope you don’t mind me including this picture of you, that I nicked from Katherine’s Facebook page, but you look so happy:

A Happy Suz

In the beginning…

August 25, 2012 § 6 Comments

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

August 24, 2012 § Leave a comment

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


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.

Cancer Doesn’t Scare Me !!

August 23, 2012 § 1 Comment

It’s true cancer doesn’t scare me – I feel totally up to this journey.  I don’t think it is because I am naive or in denial- maybe more that I’m at the beginning of all this process. Anyway we shall see. . . . I hope I prove myself RIGHT !!

Whatever the case, the feeling I am struggling with at the moment is knowing that while I have this quite serious illness, I don’t actually look or even feel unwell – could be just me but I think I look reasonably OK.  This time last year I was running up hills and walking and/or running everyday.  I guess the fact that I simply can’t do that at the moment is proof enough that I am not quite as well as I think I am.   More to the point I don’t actually want to look sick – but I do feel sort of guilty attracting all this attention when, except for the treatment to come, things are otherwise pretty normal.  Again, things might change………….

The reason I am making this point is because in this process and thinking about all these issues, I have had to come to terms with trying to be kinder to myself.  I’ve been a pretty hard taskmaster on myself – high achieving, high expectations, exceptionally manic hard worker etc . . .   I was only reflecting this week about the contrast between how calm I feel about all this cancer stuff and yet how anxious, worried and pressured I’ve felt about both my professional and personal performance on so many occasions in the past.   It just struck me how skew my priorities have been and how distorted  my perception is of what is important – or should be important.  I’ve come to realise just how much of myself I have let get lost in the things that matter – but not matter so much that they should worry me as much as they have.

This is not to say that I think the cancer stuff should scare me – I truly do believe this is all manageable.  The point is that while only early stages, this whole experience has re-calibrated my perspective  in terms what is really worth worrying about.

Yep – still getting to my illness.  I’m building up to it.  I guess that what I am doing is giving you some insight into me in the first instance – I dont want the illness and certainly not ‘cancer’ to define me.  That starting point is just not the right one.


A Funny Thing Happened On My Way Downstairs

August 22, 2012 § 5 Comments

I was diagnosed with Dermatomyositis in late May of 2012 and went into hospital within a couple of days for the myriad of tests to check that cancer wasn’t the underlying cause…which thankfully it’s not in my case. I’ll do more on the whole diagnosis, test regime and ultimate prognosis in later posts. This post is to tell you about my awful day yesterday, to get it out of my system as a giant SCREAMMMMMMMM.

Ive been tapering the steroid I’m on (prednisolone) while upping the dose of the chemodrug (methotrexate). Before the treatment I would get awful knee pain and pains in my head (well scalp not head) as well as various other ailments. The ‘scalp’ pains would radiate up the back of my head, into the top of the head – these were awful because it meant I couldn’t move my head in certain positions. These abated over the course of the treatment, but now suddenly they’re back and with avengeance, along with the knee pain and the rash, just starting on my face again.

Yesterday, I went to hospital to discuss these re-occurence’s. The doctor suggested I go back up to 30mg of prednisolone for a while to see if it really is the tapering, or if the methotrexate isn’t being effective. I’m doing that. But…

When I got back from hospital I was extremely poorly – it wasn’t helped by getting lost in the hospital and having to drag my gammy leg around – I felt like I was trapped in some awful Stephen King horror story, I kept expecting to end up in some macabre operating theatre scene. I went to bed and when I woke up I had the most horrific scalp pain, its very hard to describe in words, but I understand he phrase ‘blinding headache’ now, because I couldn’t actually see properly. I’ve had migraines before, but this was something else. I managed to get to the top of the stairs, but didn’t have the strength to walk down them. Now another unfortunate symptom is that my voice is all squeaky – matches my nice big round steroid induced moon face – I look and now sound like, a little pink piggy. So I tried to shout to my partner to help me but he couldn’t hear me, I shouted and shouted, or rather squeaked and squeaked. I ended up breaking down and cried and cried.

I cried for the loss of my health

I cried with the pain in my scalp

I cried for me and I felt as sorry for myself as a person could ever feel

Steve eventually heard me and came to my rescue.

But yesterday I realised just how sick I really am and I don’t like it and I so badly want to be better.

This time next year, I will go to the Musee D-Orsay and I will walk around the whole of the museum and I’ll eat cake and drink coffee with caffeine in it.

Where Am I?

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