The matter of migraine

Migraine. Not a headache. Not something that goes away when you take two paracetamol. Not a headache. Not a convenient excuse to phone in sick with.  Not a headache.

Migraine. Losing my eyesight. Not being able to put my head on a pillow. Vomiting. Feeling like my head will explode from the pressure. Drugs. A lot of drugs. Injections in my head. Lying in the dark. Hospitalisation. Confusion. Exhaustion. Sometimes seizures.

Definitely not a headache.

Migraine. Nothing to do with chocolate, red wine or cheese. Nothing to do with my periods, my weight, or stress levels. Nothing to do with being tired, or trying to do too much. Nothing to do with going on Guide camp, or Brownie holiday.

Migraine. It’s great that paracetamol/ lavender oil/ a cold compress/ ibuprofen/ a migraine stick/ not eating  cheese, dairy, wheat, alcohol, yeast, chocolate... etc/ yoga/ standing on your head/ talking about it/ not talking about it/ lying down in a darkened room/ exercise/ resting/ not making a fuss/ getting on with things/ taking some time out... works for you. Sadly I need drugs. Strong drugs: Sumatriptan, Polychloraperazine, ibuprofen, clobazam. Occipital nerve blocker injections. And when and if they work, sleep. A lot of sleep. A sick bucket. The dark. The quiet.  And sometimes none of that works.

In the UK today 190,000 people will have a migraine. And that’s just the ones we know about. I don’t have one today *hurrah* But I might do tomorrow. Although I try not to think like that.

I have what’s called chronic migraine that means without intervention I have 15 or more days pain per month. It started after a bout of what we think was meningitis in 2011. Either that or that was the first migraine. Only last week my partner said that his parents came to visit me while I was in hospital. No clue. Apparently my Mum spoke to me around the same time and I was talking slurred gibberish. No clue about that either.

Anyone can get migraine – children, teens, adults. It doesn't discriminate. Sadly, many of us with migraine are discriminated against – support from the medical profession is notoriously hard to find, it’s difficult to gain support at school, college or work when many, many people use ‘migraines’ as shorthand for a headache. And that’s not to put down the effect a rotten headache can have on you. But there is a difference between that and migraine.

1^st – 7^th September is National Migraine Awareness week – awareness and understanding of migraine is incredibly low yet more people suffer with migraine that with Asthma, Epilepsy and Diabetes combined.  Why not get involved – join in the discussion on Facebook or Twitter using the hashtag #morethanjustaheadache. Or just go onto the Migraine Trust’s website and have a look at how migraine affects 1 in 7 of the UK population. The travelling diary is particularly good.

Migraine. Not a headache.

Sunday sinusitis: a break from baking

Regular readers know that I have a tendency towards sinusitis - for me it causes a lot of head pain and means my balance is even worse than ever, but otherwise it's not too debilitating. I use menthol crystals as an inhalation but for some reason we seem to have run out/ lost them in the move. 

A lot of Googling and some pinning later I found out that Vicks (of the chest rub) used to make shower discs, that you put on the base of the shower and dissolved in the heat releasing essential oils as they did so. However, they were either an American thing or are long since discontinued - much like our beloved Wrights vaporiser, the only thing known to shift coughs and colds in our house when we were growing up. A few years back I think Lush made a similar product, but that too has been discontinued. 

So, I decided to make my own. I based it on this recipe, but found I needed to change up some of the quantities, hence this post. 

Sinusitis shower steamers

1 cup of baking soda - you get this in the cleaning aisle (I found it for £1 in Savers)
1/3 cup of water
30 drops Rosemary essential oil*
30 drops Eucalyptus essential oil*
30 drops Lavender essential oil*

Cheap fairy cake cases
Fairy cake/ jam tart type tin

Preheat your oven to 180 degrees
In a bowl you don't use for cake baking (the essential oils linger a bit even after washing) mix up the water and the baking soda until you get almost a gel. Add the water tablespoon by tablespoon - you need it to set, so the mixture shouldn't be too wet. 

To the wet mixture add the essential oils and mix in
Line your cake tin with fairy cake cases, and spoon the mixture in
Cook for 20 minutes
When you take them out and they're still warm, add a couple of extra drops of each oil to each 'cake'
Remove each cake from the tin before they're completely cool, and when they are cold store them in an airtight jar in the bathroom.

You'll need to peel off the paper before you use them, but you should get a good hit of the oils in the shower. 

*Just to note that there are contraindications with the use of essential oils and certain health conditions - this site here lists some of the most common. Just because I'm using them without issue, doesn't mean you can, check with your GP if you do have a pre-existing health condition and you want to try these. 

Operation Hospital Food: My thoughts

This is a dish of steamed salmon and cabbage. I have no idea what the gunky white sauce was

No showtunes today. This is serious business. Our health. Your health. My health.
As regular readers will no my health has not been stable for the last nine or ten months. A dose of viral menigitis inflamed my occipital nerve and recurrent migraines has been the net result. Since Christmas Day I've had one, which is just starting to improve thanks to some heavy intervention in the form of nerve blockers. (I stay just starting to improve it's actually got a lot worse in the last 24 hours, but let's not go there). Since Christmas I've spent 6 nights as an inpatient in Barnet General, my local hospital. However, I have had epilepsy since the age of 11 and have spent multiple nights in hospitals owing to concussions, infections and seizures over the years.

Why is this of any interest to you, well you may ask. I have just watched the first episode of Operation Hospital Food with James Martin on BBC2. Mr Martin has tasked himself with revamping the food offered to inpatients at a hospital in Yorkshire. This naturally struck a chord with me following my recent stay in Barnet.

What has always surprised me about hospital food is how different it is from anything I recognise as healthy. My diet is heavily reliant on fruit and vegetables, with protein and carbs in what I hope are semsible measures.  I have always dismissed hospital food as having issues because it was mass catering, yet not so long ago at GirlGuiding UK's Centenary camp (so more or less in the middle of a field) I saw mass catering done amazingly well - casseroles, roast dinners, pasta dishes. Simple dishes, cooked well. And on budgets that didn't difer so much from the quoted £3.50 per head per day from the NHS.

Obviously a hospital is trying to cater to a huge cariety of restricted diets due to faith, health, and choice - but what I see within that, what I saw in Barnet General, is a reliance on convenience food - packets of biscuits, cuppa soups, ready brek to name but three examples where simple healthy eating Guidelines could easily see that replacing those with proper porridge, vegetable soup, and homemade flapjacks (to give one set of examples) would increase dietary fibre - I can say from personal experience that pretty much everyone is constipated in hospital - as well as bringing some old fashioned goodness into people's meals. Vegetable soups, would bring in vitamins, and raise people's chances of getting their 5 a day, flapjacks are a perfect vehicle for dried fruit, which would increase energy. Simple options like a proper milky drink (for those who can tolerate it) at bedtime, and more leafy green vegetables would reduce the need for such a reliance on calcium tablets, and as I've said increasing dietary fibre and fluids would stop seemingly every second patient requiring laxatives of one type or another. Surely the purchasing managers could work with clinicians to view a Return on Investment from altering patient meals - if people are well nourished whilst on a ward, their recovery will be quicker - problems such as dehydration, and malnourishment will present less frequently?

I wonder that the reliance on ready brek et al, isn't purely out of convenience, the hospital James Martin was at had a kitchen (albeit woefully equipped), yet I'm not sure if there is one on many NHS sites - especially those touted as the most modern. Interestingly all sites have a cafe, or restaurant and the funding model this programme is exploring looks at investing all profit from those establishments back into the budget for patient food. Something which I wholeheartedly agree with. However, if the hospital cafe and restaurant aren't willing to serve the food that is offered to patients on the menu for staff and guests, why should it be good enough for those who are most vulnerable?

I'm not saying I have all the answers - for instance I'm sure my pithy 'well why not substitute flapjacks for biscuits' would be met by a dietician raising the issue of sugar - and yes, on my side ward 3 out of the 6 women had diabetes type 1 or 2. And of course a lack of an actual kitchen would prevent food being made on site, which is, I suspect the reason for the reliance on menus such as the Steamplicity being used in Barnet. I may not be the person who can change things on a large scale, I suspect Mr Martin will be heralding that sea change, but please, if you have family or friends in hospital and you care about their recovery - take them in some fruit, some homemade soup in a flask, encourage them to increase their fluids. If like me, they just can't eat what's on offer, then salads, or sandiwches are fantastic alternatives.

The NHS has a huge amount on it's plate with the upcoming changes fromn Central Government, I expect patient nutrition is a long way down on their list of worries at the moment - however each time there is a patient survey they come up as huge issues. Perhaps these concerns have to be raised locally, with local purchasing managers and Chief Executives.

I may be one person, but I just think when you're weak, when you're poorly, at your most vulnerable, that's when what you eat has an important job to do, it needs to nourish you back to help whilst your body deals with what ails you. Surely people's recovery is speeded up by proper nutrition - surely then part of the function of a hospital is to speed that recovery?

I will continue to tweet Operation Hospital Food using this hashtag #ophospfood please feel welcome to join in the conversation, perhaps if enough of us do this, both local NHS Trusts and Central Government may start to sit up and take notice.

Post hospital update

I'm attached to the sofa once more, laptop on, telly on - catching up on essential viewing. "The story of musicals" I'm looking at you.

Following on from my last post, I've returned home, still nursing the tail end of a migraine that had affected my occipital nerve (I think) and that was not responding to analgesia. A week of fluides and exceptional care has meant I really do feel better, even if I am still in pain and am incredibly fatigued.

Fortunately whilst I was away M stocked up the freezer with food - as a non foodie/ cook he perfers to 'throw and go' and looks for food that is unprocessed which can be cooked from the freezer. Normally I would bustle around the kitchen indignantly but I currently have neither the energy nor the inclination so will be working with those as they really are easier for us both right now.

Flavour is a huge thing for me at the moment, I feel a little like the hospital food has left a patina of flavourlessness in my system, that if I could I would scrub clean. Instead I'm trying to ensure that what I am eating is strong in flavour, be that irony spring greens from my veg box, or a bowl of Vanessa's Borscht with horseradish that I made pre hospital to use up the last of the Riverford beetroots that had been hiding in the fridge as I tried purposelessly to ignore them over Christmas. Somewhere in the bright colours, and strong flavours of the food I'm craving I am sure lies the way back to health.

Lying in my bed in hospital I was sure that I'd be well enough to bake when I went home, and was planning a sticky marmalade cake to take to the in-laws this weekend. As it is I'll be travelling up in my pyjamas and lucky if I manage to be awake whe we meet. So I'm guessing all baking exploits are on hold until I'm back on my feet a little bit more. I do have a Valentines cake up my sleeve that I was hoping to post pre St Dwynwen's day but the next week or two will do me. And then of course there's a birthday afoot... I was going to make another of Ruth's fruit cakes, but instead I've got another plan. Time and health permitting of course.

In line with a dear friend's New Year's resolution for me this will hopefully be the only hospital based post this year. Fingers crossed and all that. Onwards and upwards.

Meal planning Monday: the hospital edition

First off, please bear with me through this post. I wouldn't have the inspiration to write it were I not seriously poorly, and I know from previous experience that once discharged my impetus to write lessens as I focus on returning to health & work. also I'm dictating it through dragon as my eyesite is somewhat restricted.

I've been an inpatient for 7 days now and I'm not eating a great deal, which, whilst not a problem for me clearly could be for other patients. Now contrary to what the government might have you believe this has nothing to do with nursing care which has been fabulous. Nurses sit and help those too frail to feed themselves and encourage those who are disinclined to eat because of illness or pain. And that is without exception on both wards i've been on thus far

However, the food is not good, in quality, in terms of nutrients, flavour, texture, and what is on offer.

Breakfast: cornflakes, rice krispies or ready brek. Bread and jam or marmalade. Tea or coffee to drink

Lunch and dinner are selected from something called a Steamplicity menu. I'm having trouble seeing but from what I can understand instead of microwaved the meals are reheated/ finished off in an industrial steamer.

I'm alternating between poached salmon & cabbage and roast(?) chicken and carrots. Both dishes come with potatoes but I feel no need for extra carbohydrates as I'm doing little other than taking painkillers.

I've been having sandwiches, either chicken (roll I think it's called) or cheese and tomato with a yoghurt. There is cup a soup on offer but I'm having fruit juice cups that I dilute with water instead.

Mass catering is difficult, especially to the restrictive budgets set by the government. I think it's fair to say I've seen it done far better from the eating perspective and suspect that in newer hospitals the infrastructure isn't there for the development of properly healthy tasty food.

I don't claim to have all (or even any) of the answers, but hoped this would raise the question of the affect of a diet of hospital food on ones well being. I certainly don't feel any better or particularly nourished in any way and am craving fresh fruit, vegetables and textures desperately.

Epilepsy Awareness week: Information & empowerment

Sorry all, no food here. Safe to say I'm posting with a coffee and a bun though, and I'll see if I can find some gratuitous cake shots for you at the end.

This week is Epilepsy Awareness week, the Epilepsy Society where I am lucky enough to be treated have set the themes as education and empowerment. I am lucky these days, in that I am well controlled, I am compliant and I have an amazing Epileptoligist at the Epilepsy. Doctor Koeppe is my hero - is unfailing faith that I will be totally controlled, the beam when I said I was thinking about starting a family in a year or so. In his eyes nothing is impossible. Epilepsy is not a barrier to me achieving. Sometimes I need reminding of this.

I work, full time.  I am good at my job.
I take medication
I am a Guide and Brownie leader.
I swim
I do yoga
I love to bake (as well you know)
I walk.
I have annoyingly frizzy hair
I love nail polish
I wear glasses
I can do the clapping to Eidleweiss with my eyes shut
I have climbed the Sydney Harbour Bridge
I sleep a bit more than your average bear
I hate ironing

Epilepsy doesn't stop me living a perfectly normal life. I just adapt things occaisionally to help that happen. At home I have a non slip mat in the shower. Chairs that I can sit on at the cooker, I don't have a gas cooker, my hob has a safety setting to switch itself off. I have non slip grips under my rug. At work, I sometimes have a rest at lunchtime if the day is stressful or I am not sleeping. I ask for support when I need it. In Guiding I try to have an extra leader for ratios so I can have a sit down or a nap if I need one.

My friends are amazing. None judge me, treat me any differently for having a fluctuating health condition. At school this wasn't always the case, but with love and support y'know I eventually got through that. Being diagnosed was a slow and difficult process for me, but that was about 20 years ago, be demanding, ask for second opinions, and push. If you know something is wrong then keep asking questions.

Keep a seizure diary. What, when, how long, if you suspect there was a trigger what was it?

Some things I would say - please know what to do if someone around you has a seizure:

http://www.epilepsysociety.org.uk/AboutEpilepsy/Firstaid/10firstaidstepswhensomeonehasaseizure

1. Stay calm.
2. Look around - is the person in a dangerous place? If not, don't move them. Move objects like furniture away from them.
3. Note the time the seizure starts.
4. Stay with them. If they don't collapse but seem blank or confused, gently guide them away from any danger. Speak quietly and calmly.
5. Cushion their head with something soft if they have collapsed to the ground.
6. Don't hold them down.
7. Don't put anything in their mouth.
8. Check the time again.
If a convulsive (shaking) seizure doesn't stop after 5 minutes, call for an ambulance.
9. After the seizure has stopped, put them into the Recovery position and check that their breathing is returning to normal. Gently check their mouth to see that nothing is blocking their airway such as food or false teeth.
If their breathing sounds difficult after the seizure has stopped, call for an ambulance.
10. Stay with them until they are fully recovered.
If they are injured, or they have another seizure without recovering fully from the first seizure, call for an ambulance.

If you want to know more about epilepsy - have a look at the Epilepsy Society's website.

My final thoughts are, that if you have epilepsy, adapt your life to live it as normally as possible. If you want to do something, work through how you can do it, don't dismiss it straight off. Be open with those around you, Epilepsy isn't something to be ashamed of. The more we talk about it, the more it's normalised. Don't be afraid of your condition, control it.

Moving too fast

Photos above are anything and everything food related from my phone, as the camera is at my Mum's - a peril of being without permanent abode I'm afraid!

Once again I find myself compelled to start with an apology for a gap in writing. It's not that I've not been cooking, far from it - but circumstances seem to conspire against me being settled, and able to cook, write and post on a regular basis.

To explain further, shortly after mine and Jess' enchilada extravaganza, my ex-flatmate decided that she wanted to live by herself. Which is fine. But put me under pressure to find somewhere new to live in my local area at a time when there was (and is) just little movement in the rental market. Obviously as regular readers are aware, I need to balance my needs as a disabled woman with ensuring continuity for my Guides and Brownies, and of course I work in the Public Sector at a time when there is less job security than ever. Not a good combination with trying to find somewhere new to live, continuing to be productive in my job, and volunteering. So life has not been easy, I have been travelling the length and breadth of London on a regular basis, carrying my life on my back (I know! Bad plan for starters) with most of my possessions in that vague, uncertain place known as 'storage'. My favourite roasters, utensils, plates and cups, all packed away in copies of the Metro and taken away in a lorry.

Anyway, I haven't been as unfortunate as that suggests, I have a lovely boyfriend, who puts up with my need to completely take over his kitchen on a regular basis, and who in actual fact reminded me this morning that I needed to write something for here. My mum has turned a blind eye (and surprisingly, eaten) much of what I've turned out in her (far nicer than anything I'm used to) kitchen, including encouraging me to make the trifle for the Christmas dinner - more on this later too. Hopefully.

So, with support and help I'm getting along. As with many people with a long term condition my health has been seriously affected by the uncertainty and change I've been coping with. Regular seizures, a horrible bout of flu, and sinusitis have kept me indoors and largely aleep since November. Whilst I live in eternal hope of healthy stability, I'm also developing some patience (anyone who follows me on twitter and who is party to my frequent rages/ grumps/ whining about my health can roll their eyes here) with my health and trying to expect less of myself, and judge myself less harshly. Interestingly, with support I'm learning to rest more, to let other people pick up things and not try to do everything myself. It's hard to admit that as a young woman you need support but I'm getting there. It's interesting the lack of support that is available from the Public and Voluntary sectors in these economic times, and the expectation from Adult Social Care that friends and family will act as unpaid, unsupported carers just because one's needs are 'moderate. Although how 'moderate' and homeless sit together I will never understand!

Anyway, before I get up on my soapbox - naturally an adapted one ;-) - I'll tell you a little bit about my foodie exploits these past months. If that's OK?

Well we've had 2 pack holidays with the Brownies, and have done lots of cooking - the usual baking, but also from scratch meals as well. The girls universally enjoyed cooking 'normal' meals as well as fairy cakes, caramel shortbread, and 'armpit' fudge. I'm without camera at the moment but will endeavour to add that post later this week.

I've been involved with Sainsburys a little as a part of the launch of their Christmas freefrom range - I was invited to Christmas dinner with some lovely other bloggers and had the pleasure of sampling some lovely gluten and dairy free recipes and products. As well as the Taste the Difference wines and traditional lemonade. Both of which were gorgeous. The evening itself (and the tiramisu I made with the Gluten Free Mrs D were lots of fun, and one of my aims for 2011 is definitely to get involved more in the blogger community.

Sainsburys also sent me some of their Taste the Difference mincemeat to test early in December and I duly made mince pies for my boyfriend's father's birthday. I have to say these went down a treat, and I used up some pastry cases I had lying around after catering my sister's hen do as well as making my own pastry (top tip for pastry for mince pies - use orange juice instead of water to bind). Which does mean my dear readers that I have finally beaten my pastry demons. I am so proud!

Just before Christmas Kavey of Kavey Eats asked on twitter for our Christmas loves and hates, I very honestly admitted that my mother's 70's tastic trifle was a big hate for me, but that I didn't know how to broach that with her. Now I'm pretty sure that my mum doesn't read this (or twitter) but oddly enough she asked me to make the trifle this year, and I was allowed to deter from the typical tinned fruit in jelly, set custard with dream topping affair and make a spiced fruit trifle that wasn't dissimilar to my summer fruit fools last year.

What else is there? Mabel has been sorely neglected of late, so I'm going to give her a good feed tomorrow night, and with any luck (cross your fingers for me that she hasn't expired) and hopefully introduce my boyfriend to the world of leavened bread next weekend.

My skills with leftovers continue - this Christmas my turkey and ham pie spawned a recreation with chicken and leeks that has become a firm favourite in the repertoire. Oh and the addition of a slow cooker to the boyfriend's kitchen equipment has meant that I am casseroling with aplomb and an alarming frequency.

So that's where I am and what I've been up to of late, I hope it doesn't make for too dull reading. I'm hoping that 2011 has some stability in store for me, not least as I have a kind of plan in my head that would allow me to extend my cooking adventures out to a wider audience , but I'm not sure how one goes about making a job/ business out of what we love. Advice, mentoring and guidance is gladly received at this stage as my capacity for thought in a head that's full of flatshares, what's in my rucksack, and planning a Guide holiday that I've faithfully promised them yet utterly failed to organise!