Brain fog

A cardinal symptom of M.E. is “brain fog”, but it’s also common in other diseases like EDS and MCAD.  Before my drug allergies kicked in I’ve been sedated (using valium/diazepam) for various medical procedures and that’s just how brain fog feels to me – like it’s 4am and someone has just woken me from a very, very deep sleep.  I’m groggy, dizzy, disorientated, confused, seeing coloured stars and can’t think clearly.  Only I have to live every waking moment like that.

On top of the sleepy fuzzy dizzy grogginess I also have problems with short-term memory, information processing and my problem solving skills have done a bunk.

Yesterday was a classic “brain fog” day for me.  I stood in the kitchen to make breakfast and it took me several minutes to remember why I was there and what I usually eat (toast, every morning for 2 years!).  I had to go into town and got chatting to a shop assistant who we discovered used to live in my village.  We were discussing our mutual acquaintances and she asked me what my cousin was called.  Could I remember?  That would be a big fat no.  On Tuesdays and Fridays I have some yeast-free bread put aside in a local deli.  So I went to collect it.  The assistant looked at me like I was nuts and said “er, did you ask for bread to be put aside today?”  Me: “why, what day is it?”  Assistant: “Wednesday”.  Me: “That would be a no then” ;-)

My short-term memory problems probably cause me the most hassle.  My mobile alarm pings several times a day to tell me to do stuff: put the bins out, book my Tesco shopping, collect my bread (!), water the houseplants…… Without it nothing would get done.

Blogging is a huge challenge.  I’m effectively writing these posts with a brain injury, so when readers pick me up on little things like I haven’t included this or that, or I haven’t expressed myself particularly well, it really does rankle cos I’m doing my best.  I’m simply not clear headed enough to read the post back several times to make sure nothing I’ve said could be mis-construed and I dno’t have the energy to worry about whether my humour is translating well in 180 other countries, whether I’ve been tactful enough or whether I’ve included every single piece of relevant information (it’s a blog, not Wikipedia).  Thank God for spellchecker.  Since I went down with M.E. I have developed some kind of dyslexia.  I write letters back to front, can’t spell for toffee and often miss entire words out.  One of these days I’m going to publish a blog post without spell checking it and you’ll be able to see just how terrible my writing really is!

Pre-illness my brain was sharp as a tack and I miss it.  I miss being able to have indepth conversations about politics or the state of the economy.  I miss having a solution for any problem I was presented with.  I miss being able to spell.  I miss being able to express my thoughts well.  I miss my memory.  I miss seeing the world clearly.  I miss being awake.

Over the years I’ve adapted to many aspects of my illnesses and forget now what being healthy was like, but I’ve never adapted to my brain fog.  I can still remember what it’s like to have a clear head, even though it’s been 21 years since I had a clear head for any second of any day, and I still miss it.  I always will.

Still me

My brilliant friend Elizabeth Milo has prompted this blog post by something she wrote on her Facebook page and I have her permission to reprint it here.

“My whole life I exploded in one way or another. Exuberant excitement, blazing opinions, howling heartache, effusive laughter, explosive temper. I was told to relax, calm down, mellow out. I was jealous of my quiet, even-keeled friends. They weren’t open books, they held some power by holding back.

Then I got sick. And all of that which made me too much for some people is now too much for me. I’ve been straitjacketed into temperance, placidity and passivity by an illness that has not only taken away walking, working, whirling, but has also taken away my *expressions* of emotions and passion for life. They’re all still there, just tamped down and muted out of necessity.

There’s nothing I wouldn’t give to be too much again.”

I’ve been ill for so long I forget who I used to be until something like this reminds me.  I’m not one of life’s wallflowers.  When I’m in the supermarket and a song comes on that I like I’ve been known to literally dance in the aisles.  I talk to strangers in the queue for the cashpoint.  I love too deeply.  I laugh too loudly.  My friend K constantly tells me to “shhhhhh, everyone’s looking” because I shout when I’m talking of something I feel passionate about.  I get involved in drama even though I hate confrontation because I feel the need to stick up for what’s right.  I blog, even though it means I’m open to having my every thought, word and deed criticized by people who obviously live perfect lives, which can be deeply hurtful.  Put it this way, when I’m in a room you kinda can’t miss me ;-)

Having severe ME robbed me of myself.  I could only speak in whispers for a few minutes at a time.  Laughing could put me in bed for days.  I couldn’t sit upright, let alone dance.  I lost my boyfriend and haven’t loved since.  Any kind of confrontation could make me feel like I was dying (and still does).   Writing my name on a birthday card could put me in a coma for the rest of the day.  I became invisible.

Yet *I* was still in there, in that sick, half-dead, emaciated body.  I just had to find a way of squashing down my exuberance, my thirst for life, without it making my mind and heart sick too.  It took a lot of practice and I resented not being me.

Like EM, I used to be jealous of calm people.  I hold such admiration for those like Toni Bernhard who are able to live a life of chronic illness with grace and quiet acceptance, but I’m not her.  I’ll never be like her.  And if I’m honest, I don’t want to be.  I like to shout and dance and rage – it makes me feel alive.  I get life wrong sometimes and that’s OK just so long as I don’t hurt anyone in the process (which I usually don’t, I only tend to hurt me).

When I started to improve and had the energy to occasionally be myself again I became better at it.  I no longer apologised for who I was.  I wish there were more people like EM and I.  People who grab life by the short and curlies, rather than living quiet lives of stoic acceptance.  If those around me think I talk too loud, or laugh too much, or am too eccentric they can jog on.  I want to be out there.  I want to participate.  I want to connect with the endless energy of the Universe.  I am alive and I want to live with heart and soul and gusto, well as much as my crumbling body will let me.

My illnesses and I, over the years, have reluctantly but thankfully called a truce.  I can no longer fully be the me I want to be, but my body no longer has full control either.  Most days we grudgingly rub along together, both compromising in our needs.  It’s not ideal.  I want to win the battle, my body seems hell bent on defeating me.  Some days it wins.  Other days I force it into submission.

My body has never won the war though.  After all this time my essence, my soul, my mind, my heart, all the important bits that make me truly myself remain intact.  Illness can rob us of many things but never that.

Weekly Roundup

So, last week I was in agony with a subluxed rib and not able to even wipe my bum, and this week there is not so much as a twinge of pain.  Brilliant.  But weird.  The acute pain from the rib slippage lasted 3 days, then I woke Wednesday morning and everything was fine.  The rib had obviously gone back where it was supposed to without any intervention from me for which I am hugely thankful.  I’ve never had an injury which has resolved like that before and found it all a bit odd.  But good.  Definitely good :-)

I was discussing it with my friend and realized that I never report these injuries to my GP.  I can’t see the point because all she could do is prescribe painkillers which I can’t take.  However, this lack of reporting and only ever going to see my Doctor when I need an annual sick note for my insurance company means that my medical notes don’t reflect my illness experience.  Welfare Benefits have become stupidly hard to obtain here in the UK in recent years and if someone were to write to my GP asking her to back-up my claim for disability benefits she’d have nothing to go on – it must look like I never have a days sickness in my life!  So I’ve decided that when anything substantial happens I’m informing my GP.  I won’t make an appointment (the last one took 6 weeks) as she’s vastly overworked and I don’t need to see her, but I’ll write her a letter.  I did that this week, detailing my rib subluxation, the fact I’m now off my crutches and my Greater Trochanteric Bursitis has settled down although it did take 9 months, and also that my Dentist has referred me to the Oral Surgeon at the Hospital for my subluxing jaw joint which I’ sure she knows nothing about.  It’s about time after all these years I started honestly telling her like it is instead of stoically just getting on with it.

My peri-menopause hormones definitely seem to be ramping up again.  Which is great, because I’m desperate to have my periods over with, but the symptoms aren’t particularly pleasant.  I’m currently going through another angry phase – every little thing winds me up and I seem to spend my days chuntering swear words under my breath and plotting ways to bump people off.  I’m normally quite laid back, so to constantly feel grumpy and on edge is alien.  This is one of the reasons I’m glad we don’t have guns in the UK, because if they were freely available the farm dog next door who wakes me every morning at 6am barking would be dead by now ;-)

I had two rejections this week.  My friend told me about a photography competition for ‘Landscape Photographer of the Year’ where the prize was £10,000.  OMG what I coul do with ten grand!  So I entered, even though I had to pay £30 I didn’t have for the privilege.  A member of my Camera Club actually won last year, so it’s definitely do-able.  Only I got nowhere, which isn’t surprising as I’m hopeless at landscapes ;-)

My second rejection came from a stock photography site.  As you know, I was accepted by iStock and have some sold of my photos.  So I decided to also join Shutterstock for more chances to earn much needed cash.  You have to upload 10 images and if 7 are accepted you’re in.  So I used 10 images which had already been accepted, and sold, by iStock thinking it was a no-brainer but only 3 were accepted!  The photo of swans below was rejected on two counts, bad lighting and bad focus.  Honestly, I’ve looked through photos on the site of people’s rabbits in their back gardens that look like they’ve been taken on a camera phone by a 4 year old, and then this picture is rejected.  I can’t do any better, so will just knock Shutterstock on the head.  They’re selling microstock at a disrespectful 25c per picture for heaven’s sake, not art prints which are going on a billboard in Times Square!

Infinity swans

HIT: DAO & Peashoots

Along with Mast Cell Activation Disorder I have the double whammy of also suffering from Histamine Intolerance.  Many people confuse the two, but they are distinct diseases with different causes and need different treatments.  Histamine Intolerance (HIT) is caused by a lack of enzymes in the stomach, one of which is Diamine Oxidase (or DAO).  There are other enzymes involved but DAO is the only one we currently know much about.

All the food we consume contains histamine, but some foods are much higher in histamine than others.  When we eat our stomach also produces histamine to aid digestion.  DAO then mops up any histamine left over from the digestive process.  For those low in DAO, however, this excess histamine isn’t dealt with and results in histamine toxicity with all sorts of unpleasant symptoms.

We don’t really know, as yet, what causes DAO deficiency.  It’s thought that some people may be genetically low in the enzyme, while other people may acquire DAO deficiency through taking certain medications.  I’m not sure where I fit in in these hypotheses.  I haven’t taken drugs for years due to my MCAD reactions, and until I was in my mid-forties could eat anything I liked without any kind of reaction so if I’d been born with low DAO this surely would have shown itself earlier.  So my guess is that there are other factors at play which can affect DAO of which we are currently unaware.

It’s obvious why following a low histamine diet helps in HIT – the less  histamine we eat the less our stomach has to deal with and the less histamine is floating around our bodies causing havoc.  There are supplements on the market, eg. DAOSIN, which claim to increase DAO.  My Consultant, when asked, didn’t dismiss these entirely but did say that he doesn’t endorse them as there is no evidence on their efficacy or safety.  It’s up to the individual, therefore, whether they want to use supplements without really knowing how they work or if they have any negative side effects.

There is an International DAO Society made up of researchers who study DAO and their research has found that DAO is abundant in young pea shoots.  You can buy these from the supermarket, though they do degrade quickly and look a bit like a limp rag by the time you get them home, or you can grow your own.  It’s cheap, easy and a lot quicker than you might think.

1. Buy a bag of dried marrowfat peas from the supermarket.

Photo of dried marrowfat peas

2. Soak the dried peas in water for 24 hours (the amount will depend on the size of crop you want, but it might be best to do a large handful every few days then you’ll have a continuous crop rather than having them sprout all at once).

Photo of dried peas soaking in water

3. Select a shallow container, about 2-3″ (6-9cm) deep – seed trays are ideal, or you can use a wooden box so long as you put drainage holes in the bottom.

4. Fill the container with compost, multi-purpose is fine.

5. Water the compost, then just lay the soaked peas on top.  You can sow them close together, just any old how is fine.

Photo of sowing peas in a tray

6. Cover with a layer of compost, about the depth of one pea and water again lightly.

7. You can grow peashoots both indoors or outdoors.  Research suggests that growing in the dark for the first few days can increase the DAO produced by the peas, but I just grow mine in the kitchen windowsill.  They start to germinate literally within 24 hours.

Photo of germinated pea shoots

8. Keep the compost moist but not wet and within 2 weeks your shoots will be about 3-4″ high and ready to harvest.  Chop off the shoots above the first set of leaves.  Some of the shoots will then re-grow and give you a second crop.

Photo of peashoots ready to harvest

You can add peashoots to smoothies, or salads, include in sandwiches or use as a garnish.

Apologies for any typos in this post and my poor grammar – I’m trying to write on an empty stomach and through a pounding spacey migraine!

 

More on Superfoods

As regular readers of my blog will know I don’t believe 99% of the things I read online about food.  I think all natural food is superfood and each food has its own special blend of goodness.  Even the things supposedly bad for you, like sugar.  Last week while I was waiting for my period to arrive I was a shaking, bad tempered wreck.  If I ate something sugary every couple of hours I felt fine – no more shaking and no more evil mood.  But I believe in moderation in all things.  Eat too much of any one food and it’s not healthy, even if the food per se is ‘healthy’ – eat too many carrots, for example, and you can turn your skin orange!

There has been a cracking little programme recently on Channel 4 about superfoods.  The reporter actually tried them all herself and the effects on her body were scientifically measured.  The results were surprising.

Foods which stood up to their claims include:

  • Oily fish.  Really does stop plaque formation in arteries and helps avoid the risk of stroke.  Recommended serving: 2-3 times per week.  Omega 3 oil is also found in good supply in dairy products, walnuts, tofu, beans and even meat, however, so fish isn’t your only source.
  • Broccoli.  Really does help fight cancer.
  • Quinoa.  Is miles better for your blood sugar levels than ordinary white rice and contains more nutrients including protein which is absent from other forms of carbohydrate.
  • Orange coloured sweet potato. Contains loads more nutrients than white potato including Vitamin A (2,000 times more) and Vitamin C (double).
  • Grapefruit.  Really does help the body break down fat cells without dieting or exercising.  But there’s a catch.  You’d need to eat 40 grapefruit in one sitting for it to work, which equates to 5,000 calories!
  • Blackcurrants.  Are massively high in antioxidants.  The research tested 4 berries for their antioxidant properties.  Blueberries came last!  Second last were strawberries.  Then raspberries.  But blackcurrants were top, containing 6 to 8 times more antioxidants than blueberries.
  • Xylitol.  Does not rot your teeth like sugar does.  But that’s all I’m going to say on its positive effects.  I would no more advocate eating xylitol, which is processed by mixing it with man made chemicals, than I would advocate eating E numbers and it can give you the runs.
  • Kale.  Apparently contains compounds which are good for your eyesight, in particular macular degeneration, though the details were a bit sketchy and no-one could really say how it worked.

Foods which don’t stand up to their claims include:

  • Wheatgrass.  It is physically impossible for this to increase the oxygen carried by your red blood cells as is claimed by many of its advocates.
  • Kefir.  Although 40% of kefir survives the digestive process there was no change in the reporter’s intestinal gut microbes.  It is illegal in Europe to make claims that kefir alters gut flora as there is no evidence, as yet, to support the claim.  This applies to other probiotics too.
  • Spirulena.  No evidence that it helps with disease of any kind, including fatigue.  It contains protein and nutrients but if you’re eating a well balanced diet you shouldn’t need this as a supplement.
  • Charcoal.  Does not detox the body or absorb alcohol.  It only survives in the small intestine and does not pass into the bloodstream and therefore can’t travel to the rest of the body.  Medical grade charcoal (made, in case you were wondering, from burning coconut shells at extremely high temperatures) used in hospitals to absorb drugs after an overdose only works in the first hour of ingesting the drug, because once the drug has passed through the small intestine charcoal has no effect.  And you have to drink 500ml of the stuff, not the tiny shot you get in a juice bar.  There is evidence charcoal can help make your farts smell better, and help with gas and therefore bloating, but that is all.

I even take issue with some of the positive claims for foods.  For example, the fact that white rice raises blood sugar makes rice sound like it’s ‘bad’ for you.  Is there any evidence that Chinese people, who have lived predominantly off rice for centuries, have higher levels of diabetes than other people?  My guess would be not.  And according to the programme, the sweet potatoes grown in certain parts of Africa are so lacking in nutrients they are causing the children who eat them to be malnourished – not all sweet potatoes are the same it seems.

The programme admits that we are in our infancy in understanding how any food affects our bodies.  And as past evidence has shown our governments, for all their research (which is often funded by the food industry), still get it wrong.  For two decades we were told fat, for example, was the Devil (as we are now being told sugar is the Devil) but, ooops, turns out that wasn’t quite true.  Live on a diet of nothing but fat and you’re in trouble, but then live on a diet of nothing but fruit and veg and you’re in trouble too.  A natural, balanced diet containing a range of foods has sustained us since the dawn of time – if it’s not broken, don’t fix it.

Ribs

My life is full of surprises, and none of them are good.   Went to bed Saturday and my back was a bit sore.  Nothing unusual in that.  I’ve had a sore area come and go on the right hand side of my back for about a year now and don’t think much about it. Woke up Sunday morning barely able to move.

It’s difficult to investigate your back on your own, but from what I can gather the pain starts from a sore spot on my rib near to my spine (see picture).  The pain mostly radiates down that rib, following it all the way round virtually to the front.  There is residual pain around the rib, up the centre of my spine and slightly to the left of my back but it’s mostly on that one rib on the right at the back.  It hurts to breathe, or twist, or use my right arm for just about anything.  Doesn’t hurt when I cough though, which is odd.

Rib pain in Ehlers-DanlosI’ve looked up Costochondritis (inflammation of the rib cartilage) which is common in Ehlers-Danlos but it doesn’t seem to fit.  Costochondritis usually starts at the front on the left and coughing is acutely painful, none of which applies in this case.

I can only assume the rib in question has slipped out of alignment.  It’s definitely been weak for several months and maybe this weekend was just the time it decided to go.  Who knows?  I’m certainly not seeing anyone about it, because all a Doctor can do is offer me painkillers I can’t take.

I’ve sprayed it with Ibuleve gel and wrapped a bandage round.  Not sure the bandage helps though, as the rib in question is level with my boob so I can’t wrap the bandage around the start of the pain and can only wrap up the bottom if the rib.  Actually, writing that down I have no idea why I’ve bothered because it will obviously be supporting bugger all ;-)

Despite the discomfort I slept well last night and when I woke the pain was much improved.  Now I’ve been up and about using my back and arm however it’s increasing by the minute.  At least it proves that rest helps though, which is a good sign.  Looks like I’m going to have a pretty boring week but while it sorts itself out.

The worst part, I’m finding, is that I’m struggling to wipe my bum when I’ve been to the loo – the twisting motion is a serious “ow, ow, OW!” moment.  And I can’t bend to put my shoes on or tie my laces.  I was also supposed to be plucking Bertie’s ear hair and clipping his toe nails this weekend – he hates both and is the only one happy I’m in agony and can’t do it ;-)  Cooking is going to be a challenge this week too, I can just tell.

I did absolutely nothing on Saturday to bring this rib slippage/pain on.  I went to bed relatively OK and woke up broken.  WTF?!  Might have something to do with my period which I had this weekend, as hormones adversely affect ligament laxity and everything becomes more stretchy.  Oh well, at least my life is never dull.

Weekly roundup

My week has been dominated by hormones as I’ve waited, and waited, and waited for The Curse to arrive.  And then when it did it was accompanied by a three day migraine, which was so painful I didn’t eat or sleep for two days because it felt like a rat was eating my brain from the inside out.  I know I’ve said this before but I’m going to say it again…..being a girl sucks.

The older I’ve become the more I’ve relaxed and mellowed in many areas, but the more intolerant I’ve become to other people’s crap.  Litter droppers, people who don’t pick their dog poo up, rude sales people and just the fact that other people think it’s OK to take out their moods on random strangers wind me up no end.  The thing about age is that it brings with it confidence.  I no longer ignore bad behaviour, I tackle it – not that it always gets me the result I want, but it sure makes me feel less of a doormat.

I walk Bert on a public footpath through the woods.  It’s one of the few places with a track good enough to ride my scooter on and it’s great because I can let Bert off his lead.  The other day we were pottering along and literally out of the blue came a man on a bike doing about 20 mph who nearly ran Bert over .  The near-crash caused him to wobble badly (I soooo wish he’d fallen off!), so while he was stationary I shouted over “this is a footpath, not a cycle track!”.  He replied that he thought it was a Bridleway.  “If it were a bridleway, the sign by the gate would say Bridleway, not Footpath!” I shout back.  “OK, cheers” he says and rides off, not on the Footpath which would have been bad enough but into the woods and past a huge sign which read PRIVATE.  Dickhead.

Today I had an upsetting incident which had me in floods of tears.  The letter below will explain, but just so’s you know I am not letting this go without retaliation and am placing the letter on the Public Noticeboard in the village concerned.  I hope all this man’s neighbours read it and think he’s as big a knob as I do.

“To The Occupiers of the house circled red below (in the letter is a Google aerial view of the house in question),

I was born with a genetic disease, which means I spend every day of my life in pain. I sprain, strain, tear and dislocate every joint in my body on a daily basis from just simple things like yawning or making a cup of tea. Not only that my Mum is dying with advanced heart and lung disease, and my lovely dad is going slowly do-lally probably with some kind of undiagnosed dementia. This week, I spent 3 days unable to sleep due to my pain and unable to leave the house due to extreme fatigue. I’m only 47 years old.

On Saturday 18th July for the first time in days I felt well enough to get out of the house. I decided on a short drive round in my automatic car with my faithful companion, my Mini Schnauzer dog. I haven’t been to the local reservoir since I was a child, despite living in the area all my life, so though it would be nice to go there today. Maybe I could find a quiet little lay-by to pull in away from any roads so that my dog could have a sniff and wander around and I could get some fresh air and admire the view.   At home I use a mobility scooter, and walk with my dog clipped to my waist, however the scooter doesn’t go in the boot and when I’m travelling I have to walk using my crutches, which makes holding a dog lead at the same time impossible.

I drove along the banks of the reservoir for several miles but realized there was no-where to park or let my dog out. So I doubled back and thought the road to your village might lead me to the other side of the dam. I hadn’t been there before but it looked pretty. I drove into the village straight up the main road, to find I’d come to a dead end. I hadn’t seen any signs signalling the road wasn’t to be used by vehicles or was access only – it’s difficult going to new places on your own and when you’re trying to look for direction signs you sometimes miss other things. I obviously made a mistake driving up the road. I’m only human.

As I have problems turning my upper body round, I tried to do a 3 point turn rather than trying to back up the road over speed bumps which, by the way, are incredibly painful to someone such as me to have to drive over. But you, dear occupier of the house above, have made turning round impossible. I didn’t see the blocks or logs or whatever it is you’ve placed on the verge opposite your house so backed onto them. At which point you came flying out of your house like I was about to kill a child.

You proceeded to rant and rave at me when you could see I was already stressed and flustered. I did apologise, several times, for driving up the road but you carried on shouting regardless. I hadn’t attempted to turn round in your driveway (it’s impossible anyway as you’ve placed a humongous brick there). I hadn’t touched your car. I did not shout back at you. I apologized. I’d obviously made a mistake and a small one at that. It happens. It wasn’t intentional. None of which was good enough for you, or the woman who I assume is your wife who was also screaming in the background.

I was having a really bad day already. In fact, I’m having a really bad life already. All I wanted to do was get 5 minutes of fresh air with my little dog and instead you hurled abuse at me like I’d committed some sort of crime. If someone driving past your house by mistake is all you have to worry about in life I’m jealous.

If it makes you feel any better I drove every one of the 17 miles home in tears and was in such a state by the time I got back my neighbour took one look at me and took me into her home for a cup of tea and a cuddle. I badly needed both.

By your reaction you obviously have problems with vehicles driving unwanted up your road. Might I suggest you, therefore, have better signs erected which make it more obvious that the road is access only as I’m clearly not the only driver who is missing the ones which are already there (if indeed there are any already there).

If I were a tourist and had this kind of encounter I would never set foot in the Lake District ever again. What is wrong with you? At most, this is a petty annoyance. No-one is hurt. No-one died. Your property isn’t damaged. If you really want something to moan about you should try living my life just for one day.”

Honestly, the way he shouted at me I’m still in a state 5 hours later and felt too sick to even eat my dinner this evening.  What is wrong with people these days?  With everything I have to deal with I can still go about my life with manners, compassion, calm, a smile and a sense of humour.  It’s do-able.