Friday, 4 December 2015

Mookpixie Makes: Kale chips*

Let me get one thing out of the way first. Kale smells of farts. It smells of farts when you prepare it, it smells of farts when you cook it. It smells of farts after you cook it. Luckily it doesn't taste of farts but I'm assuming it'll smell like farts when it comes out the other side. I'll have to let you know - I haven't got that far yet..........

Aside from the bum-perfume aroma, kale is supposed to be hella good for you, so when my husband came home with a big handful of the stuff (the perks of being married to a gardener) I thought I better give it a try. It does look pretty nice in its fresh state, and it doesn't pong until you start tampering with it. 

Handy kale tip: if it looks a little wilted, leave it in a bowl or pan of cold water and it will magically become all crisp and crinkly again. 

Now, I knew that cooking some up as a side to a main dish was not wise. My husband doesn't do vegetables and getting him to eat kale would be akin to asking hell to freeze over. Kale chips sounded a good option and fairly simple to make. According to the instructions I followed, all you do is tear the kale from the stalks into bite-size pieces, place on a baking tray, drizzle on some olive oil, season with salt and pepper, then whack in the oven at 175 C for ten to fifteen minutes until the edges are brown. Easy. Even someone with my limited physical powers can manage that.

Handy Kale tip #2: Like most vegetables, it shrinks A LOT when roasted or baked. Pile it up high on that baking tray!

I did as instructed but I found the kale cooked a lot quicker, probably because I forgot to factor in lowering the temperature for fan ovens. I had mine in for around 8 minutes and they were a bit overdone; brown all over whereas ideally, you want the middle to still be green. Anyway, it wasn't burnt and was all still edible so it was on to the all-important taste test.

I've had shop-bought kale crisps once before and they tasted like cheesy feet. Coupled with the fart smell, I have to say I wasn't too hopeful beforehand. Actually, they taste pretty good. The overcooked bits have a slight bitter aftertaste but the ones that were still a little green were nice. They don't need too much salt - I added a bit too much, probably to ward off cheesy feetness - and pepper adds a nice kick to them. They are lovely and crunchy, but do seem to turn to dust as soon as you bite into them. This lends them a slightly strange texture so I'd recommend you have plenty of water to drink to counteract the powdery mouth feeling.

All in all, they are pretty moreish. I expect, like most super-healthy foods, the taste and texture grows on you. I've had similar issues with other foods I've tried that I've quickly ended up loving. The big test will be if I can persuade my husband to try one when he gets back from work. 

*kale was gifted by one of my husband's clients however all views expressed in this blog are my own

Wednesday, 14 October 2015

The things you don't see.

You may have noticed that I've been able to leave the house a bit more lately. After several years of living as a near-recluse, I have finally started to make enough of an improvement to regain a tiny sliver of social life. It feels amazing, and knackering too. More activity means worsening of my symptoms afterwards but it's a price I'm willing to pay every now and then to feel normal for a few hours every week or two.

I has spoon!

So here I am on my latest outing - a trip to the Firehouse with the in-laws to celebrate Mr Mook's birthday. It's been so long since I was able to go into town on a Saturday night so I went all out. I did my hair and even put on a little bit of make-up. As always, on the rare times I manage to venture into the real world, I was complimented on how well I look. "You don't look ill," is the standard reaction I receive, to which I usually resist the urge to reply "and you don't look stupid but appearances aren't everything." Instead, I try to smile in what I hope is an enigmatic fashion (but probably looks more like indigestion) and I say "Ah well, that's why they call it Invisible Illness." 

I know some ill folk get very fed up being told they look 'normal' because it can be a little patronising and also serves to belittle the many struggles we go through behind closed doors just to seem OK for an hour or two at a time. Personally, I'm fond of compliments so I'll take them anywhere I can get them. It does however, raise issues for me as to how much I actually show others of my day to day life. I prefer to focus on the positives, the milestones and achievements I reach on my quest for wellness, no matter how small or trivial they may seem. But therein lies the rub. If all I ever show the world is those glimpses of me at my best, how on earth can I expect others to truly understand my illness or what it takes to live like this day after day? It's no wonder people tell me how well I look. They don't see the flipside of being out of the house for an hour or so. They only see me when I'm at my absolute peak, never mind the days of preparation and resting it takes for even the shortest outing. They're not there for the days following, when I'm bedbound and in pain just from daring to enjoy myself for a while.

Not happy about having to open my eyes. IT'S TOO BRIGHT!!!

So let me tell you. Not for sympathy, mind - I've had enough of that to last a lifetime. I don't need or want any more 'you poor thing' or 'oh, how terrible' because, yes it is terrible, but life can be like that. We all have trials and tribulations but we get on with things as best we can because that's the only option. And please don't feel sorry for me, because aside from the feeling like poo and the not-really-leaving-the-house-much malarkey, I have a very enjoyable life thank you very much. No, I tell you because there NEEDS to be awareness about ME. We need funding, research, treatment, certainly a cure would be nice, but most of all we need UNDERSTANDING. We need you to realise that just because we look ok does not mean we ARE ok. Just because we make it out for a couple of hours does not mean we are magically better and able to do this every day. I wish we could but we really can't. It takes practice. It takes discipline and an iron will. It requires a whole lot of rest and planning and a healthy dose of guts.

This is the part you don't see; the several days of rest I need before going anywhere new. The phone calls and online searches my husband makes to check accessibility and dietary requirements. You're not privy to the conversations we have, planning every aspect of the trip - what I need to take, how I'll get there, ways I can rest if I need to, how to get me home again. Decisions need to be made about whether I need my wheelchair or just my walking stick. It probably doesn't occur to you that I have to plan my bath for the day before because that in itself is a major energy-burner and not to be attempted on the same day as anything else. Getting ready is also a long, drawn out process. Whatever can be done in advance, is. Whatever can't is spread throughout the day with plenty of rests in between. Once ready and the time comes to leave, you may not realise that car journeys involve a travel pillow to support my neck, plus ear defenders and sleep mask to cut out sensory stimuli. You can't always tell from the photos that I always have my earplugs in and that often, I'm the idiot you all laugh at for wearing sunglasses indoors, at night. I'm not trying to be Kanye West, I'm just trying to protect my light-sensitive eyes for as long as possible. It's the same reason I have to blow out the 'atmospheric' candles they always have in restaurants. The flickering of the flame hurts my eyes and sends my brain into overload. You might not think of me when you joke about Gluten Free being the latest trend, how it makes most of the menu out of bounds and that even something I can have, like fries, is always tainted by being cooked in the same oil as the food with wheat in it. I love potatoes. I love the myriad ways they can be cooked. Is it too much to ask restaurants to consider at least ONE way of serving them that doesn't include cooking them in wheaty oil? I'm starting to feel like I'm on the Atkins diet here....... And don't even get me started on the refusal to offer gluten free bread as an option. We have THE best gluten free bakery here in Bath, so there's NO excuse other than apathy. Yes, 'Gluten Free' might be a case of zeitgeist and bandwagoneering to some, but for me and my fellow chronically ill chums it's a necessary evil to avoid several days of liver and kidney pain, legs that don't work, and a headache straight from the bowels of hell.

Kanye in a taxi. I am SO EXCITED to be in a taxi again.

I know it sounds like I'm whinging here about how hard it is for me, and it IS hard, but I do all these things joyfully. Joyfully because I know what it's like to be too ill to leave your bedroom, too ill for phone calls, too ill for visitors. I have lived through those dark, dark days and I am determined never to go back there again. It sounds counterproductive I know, to put myself in a position that will make me more ill and send me back to a quiet, dark bedroom for a few days however if managed properly, there is no lasting damage to my health. If I were to try and live a normal life, to push my limits all the time then I would end up making myself very ill and it would take me years to recover. That's how I came to be housebound in the first place. Luckily, I know my body better these days and I know how to deal with the after-effects of overdoing it. I know I have to rest up in that dark, quiet room until I'm over the worst. I know it'll take me as long as it takes and that there's no point planning anything for a good week after any outing. As I write this, it's Wednesday and I'm still not back to my usual levels of health after Saturday's meal. I'm nearly there, but the slightest wrong move will have me back in bed and in pain for even longer. 

I hope that by sharing this with you, it might give you a better understanding of chronic illness. Of why we might look healthy even though we are anything but. It might help you realise that we are not being anti-social, picking and choosing the events we attend, using our illness as a handy excuse to get out of the things we don't want to do. That is simply not the case. When you've been stuck at home 24/7 for weeks on end, you will literally turn up to the opening of an envelope if your health will allow it! I also really hope that you don't mistake this for a 'woe is me' attention-seeking bid because, as anyone who spends time with me these days will verify, I've got this whole M.E lark down to a fine art. It rarely gets me down these days - I've managed to adapt my life to make every scrap of energy used as joyful and entertaining as possible. Despite the physical pain and anguish my outings cause, I do it all willingly because the excitement at being out of the house overrides everything else. I guess that really, I just wanted to share with you just how much of an achievement it is for me to be able to do these things again and that even though all you might see is me grinning like a fool in a series of selfies, there is a lot behind the scenes that you don't see and that unlike you lucky people, I can't just skip to the good bit.

The perks of recovery time - a Bernie cat to snuggle with.

Friday, 12 June 2015

A month or more of milestones #4 - #7

I've had so much on lately, what with Princess day and my slow, continued improvement, that I've not got round to noting down my last few milestones. It's been a great month for me overall and here's some of the reasons why.

Milestone #4 - A trip to see my GP

I'll admit this doesn't sound very exiting but it was. Any reason to leave the house when you're normally too poorly to do so is cause for celebration. I'd not managed to see my GP in person for some time. I usually catch up with her every few months via a telephone appointment although she has on occasion paid me a visit at home. This time, I was determined to make it to the surgery.My plans were scuppered by a particularly horrible virus that laid me at death's door for a few weeks but  eventually, I managed my goal!
Unflattering Doctors' waiting room selfie
My mother-in-law drove me the ten minutes to the surgery and waited with me. Luckily, I was seen virtually straight away. I don't honestly know who was more excited, me or my GP! We were both so giddy that I had made it. I told her that I bet she'd never had a patient so happy to see her. 

We had a lovely chat, reviewed my medication, and talked over my progress. She said she was really pleased to see me improving and that there were times when she had wondered if I would ever be well enough to leave the house again. That really brought home to me just how ill I have been. She also checked my records and it turns out the last time I saw her in person was December 2013 when she paid me a home visit. I left feeling amazing - not only had I achieved my goal but it was great to know I have such a supportive GP. Admittedly, her knowledge of ME is virtually non-existent but compared to the stories I hear from other sufferers about being patronised and disbelieved, I feel very lucky to have someone at least willing to listen to me properly and take me seriously.

Milestone #5 - A trip into town

My parents came to visit for the day and I marked the occasion by heading into town for only the second time in the last two years. We drove to Queen's Square (aptly named after Queen Charlotte) to see the Forest of Imagination installation that had been running over the Bank Holiday weekend. We planned to go late on Monday afternoon in order to avoid the crowds and minimise the sensory overload on my system. It was a plan that worked well although it did mean most of the events were winding down or had already packed away. Still, for someone who rarely makes it down the hill into town, it was all very exciting. I managed around 40 minutes thanks to my trusty chariot and although I suffered the usual pain and discomfort afterwards, it was well worth it.

The Mookfamily in a box.
Me and my Ma about to be attacked by a triffid.

Milestones #6 and #7

As if that wasn't enough gallivanting, I have also managed a trip to the garden centre, then the following weekend, a visit to Bath Botanical Gardens. In both cases, it's the first time I've been well enough to handle the short car journey and the sensory stimulus of being somewhere busy and vibrant. The garden centre was a great choice for accessibility as there was plenty of room between the aisles already. The trolleys they have for customers to load up with plants are slightly bigger than my wheelchair so it was easier for my chauffeur to manoeuvre me around. As well as checking out the flowers, I also got to mooch around the pet section. You'll be glad to know I didn't get a photo of the giant bird-eating spider they had there!

Chillin' with the Lupins

All in all, it's been an action-packed few weeks (for me anyway!) and my body is slowly adapting to being out and about in public. It's hardest on my brain and my eyes - so much sunlight and so much going on around me is a lot for my poor little noggin to cope with. It's now my aim to make it out of the house for at least an hour or so each weekend. Maybe I'll even manage two trips out in a week if I'm really careful? I'm hoping that I can get to a stage where I can go out for a meal for my birthday in August (the big 4-0) but for now I'm just so happy to be getting out and about again. It's been a while, but it's great to visit some the places I used to take for granted when I was well.

Imma gonna get botanical on yo' ass.

Sunday, 17 May 2015

Princess Round Up

On Tuesday 12th of May I became a princess for the second year running. Last year I dressed up as Sleeping Beauty however this year I wanted to do something a bit different because I'm not really a princessy type. Luckily for me, there are lots of different kick-ass princesses out there to choose from and after a bit of research I settled on turning myself into She-ra Princess of Power. 

In order to put a bit of an M.E perspective on this, as usual I had to plan and pace in order to achieve this magical transformation. My outfit was ordered well in advance and my justgiving page set up a few weeks before it was needed. I also planned a photo shoot for the Sunday before M.E Awareness Day because I knew I would not have the energy for it on the actual day, what with having to post all the photos and links to my fundraising online. I spent a mere 20 minutes in my garden posing for photos, waving my sword around. It took me the rest of Sunday and all of Monday to recover, and I still have a painful, frozen shoulder a week later. On the day itself I donned my outfit again and decorated the outside of my house with balloons and leaflets.

With all the excitement and exertion it's been quite a tough and painful week for me and my body. This is something I have in common with my other fundraising friends. We are all quite ill and yet we do what we can because if we don't, no one else will. It's for this reason that raising awareness for M.E is such a slow process. We simply aren't able to make a huge fuss. We are too ill for marathons or jumble sales. We spend the limited energy we have and suffer the consequences afterwards. For us it's very worthwhile because little by little we are starting to make a difference. We are starting to see a change in attitudes towards people with M.E, not just within our own friends and family but also in the media and the medical profession. We still have a long way to go but will definitely get there.

She-Ra Selfie

As for me I very much enjoyed my day as a princess. I would like to say a huge thank you to everyone who has supported me, not just for M.E Awareness Day but over the last few years of being ill. I have had tremendous support for my family and close friends. There are also my 'virtual' friends, many of whom suffer with chronic illness themselves yet still manage to spare a pound or two out of their disability benefit. Even though I have not met most of these people in person, they mean a great deal to me and I feel honoured to count so many wonderful people as my friends. I am also very touched to have received so many donations from old friends from school or college, most of whom I haven't seen for a good twenty years. It is all extremely appreciated. 

Unfortunately, the response from some areas has been distinctly underwhelming. I know this is something other princesses and fundraisers have found as well. It's quite disheartening to know that people who know you well are not even prepared to spare a pound despite seeing how much your life has been affected by an illness that is desperately under-researched. I won't dwell on the negatives though, other than to say there is still time to donate! My justgiving page is active for around another week and I am very, very close to raising £900. It would be great if I could manage the last £15 needed. All it takes is 15 kind people to donate a pound each by texting MPIX75 £1 to 70070. It really is that easy!

So back to the positives. Almost £900 raised on my justgiving page, over £5000 in total raised by all of Team Princess. A phenomenal achievement! Thank you to each and every one of you that donated, thank you to every person who retweeted or shared my posts, thank you to everyone who has taken time to read my blog and learn more about M.E. You make it all worthwhile and you make this princess a very happy one. Thank you for helping me get nearer to achieving my happy ever after.

All that's left to say is here I am in all my She-ra glory! Hope you enjoy the photos. 

Me and my balloons.
Luckily my sword didn't pop any!

Representing Action for ME
She-Ra, Princess of Power
It's like we're twins! XD  

Ready to Rumble!

The reason why I couldn't move my arm for best part of a week.....

Sunday, 10 May 2015

No charge

I've been ill with Myalgic Encephalomyelitis for almost 4 years. Known more widely by its initials, M.E, it is also known as Chronic Fatigue Syndrome (C.F.S) and more recently, Systemic Exertional Intolerance Disease (S.E.I.D). During the time I've been ill, I found myself trying to explain what having M.E is like many times. Of course no explanation can really compare to what it's like to have this illness but  I'm going to do my best to try and put things in terms I think you'll all be able to understand. There are already a few very good blog posts about invisible illnesses like M.E, for instance Christine Miserandino's Spoon Theory, as well as a rather excellent and amusing blog post by Batsgirl on likening disability to having a gorilla in your house. Here's my take on what it's like to have this illness and how it impacts on every aspect of my life.

Imagine your body is a smartphone. In my case, I'd be an iPhone because that's what I'm used to using but other brands are available! Now, smartphones are wonderful things. They can do all kinds of fancy-pants stuff and will happily whirr along doing them, seemingly without much effort at all. Just like with our bodies, a lot of these processes are unseen and very varied but the one thing they all share in common is that you need an app to run them. So I'd like you to imagine all the things your body does as an app - there's an app for walking, thinking, having conversations, digesting food, watching TV, listening to music. I could keep listing all the various apps you'd need but I think you get the picture. When you break it down, there are A LOT of different processes our bodies use that we simply take for granted. And, like the apps on our smartphones, each process requires a different level of data and different levels of battery power in order to run.

There's an app for that.......

Now, it's not surprising that as healthy people we take all these things for granted. As long as our smartbody batteries are fully charged with lots of energy, we usually manage to get through a whole day on just one charge. Occasionally we might need the odd little nap or rest in order to recharge but on the whole our bodies work well and all our apps run without problems. In the case of someone like me, who has a chronic illness, it's a different matter entirely. My body is like an older model of smartphone, one you've had a while where the battery runs low very quickly and too many apps running at the same time drains the life far too quickly and causes the phone to crash.

I'm sure you all know how frustrating it is when your phone battery is on the way out and you have to keep plugging it in throughout the day. Especially as the ridiculously short charger lead makes it nigh on impossible to use it whilst it charges. Now imagine you had to do that with your body but instead of plugging into a wall, you had to plug yourself into your bed. This is my reality. Just like a smartphone with a dodgy battery, I need to 'plug' myself in to recharge every hour or two. To do this, I need somewhere quiet and dark I can lie down to rest so that my brain is not stimulated in any way. And just like that dodgy smartphone, once charged, if I use too many of my 'apps' at once then my battery drains much faster and my body crashes. That's when things get really painful. 

Nobody likes their battery getting low.

In order to deal with this, I recharge regularly. I plan carefully which apps I am going to use and for how long. I know I can use my Watching TV app for around an hour before my battery drains, whereas my Walking app will drain my battery in about 2 minutes. Strangely, my Standing Up app lasts longer - ten or maybe even twenty minutes on a good day. The good news is that with this careful planning, my battery life is slowly improving. A year or two ago, I could only manage twenty minutes out of my dark, quiet room and needed a good couple of hours to recharge after every little activity. I could also only run one app at a time. For instance, I couldn't cope with two people talking at once. If the TV was on and my husband started to talk to me, it was too much for my brain. My Listening to Music apps and Talking on the Phone apps were completely rubbish. They just used up too much energy and data to work properly and so I couldn't do either without immediately becoming very ill. Thankfully I can do both of these in small doses now which makes life a lot easier and much more enjoyable.

So this is why at times, I look and act perfectly normal. It means I've been plugged in for a while, charging up my batteries in preparation. It's why I can walk or stand up a little yet I still need a wheelchair if I leave the house. It doesn't mean I'm faking my illness, or making it out to be worse than it is. What it does mean is that my levels of ability depend totally on how much charge is in my battery, and how long the charge will last. I'm hoping one day I can upgrade to a battery that will last me all day and run as many apps as I like, just like it used to before I got ill. If only I could just go to the shop and buy the latest model of smartbody. The scary thing is, this can happen to anyone at any time, without warning. Once your battery starts to wear out, there is currently nothing much you can do other than to rest and recharge as much as possible. It makes a normal life very difficult - if you know your battery only lasts a short amount of time, then leaving the house becomes a rarity. It's very hard to find somewhere quiet and dark to recharge unless you're at home, and with every new sight, sound, or smell you encounter the amount of charge needed to run your body increases greatly. 

I constantly operate at 20%. The emoticon sums up what that's like!

Bizarrely, there are many that think the way to deal with this is to run more apps, use up more of your battery by exercising. The ridiculousness of this advice really hits home if you imagine doing the same with your smartphone. If someone told you that using your phone more would make the battery last longer then you would think they were completely insane. Unfortunately, when it comes to people with ME, so many of us get told to push ourselves, to exercise. Eventually, the inevitable happens. Our batteries get so knackered that we have to recharge all the time and become bedbound. This is what happened to me and so many of the people I have come in contact with in the last four years. We know better now but this is why raising awareness about ME and how to deal with it is SO important. If something like this ever happens to you or to someone you love, make sure you remember to be gentle to your body and let it recharge as often as it needs. Be careful with how many apps you use and take plenty of rests to top up your charge. You really don't want to have a major crash, believe me.  The effects can be devastating.

If your battery runs out then it's game over.

Thursday, 30 April 2015

What is wrong with M.E?

One of the major aspects of M.E awareness is getting non-sufferers away from this notion of it just being 'that thing where you get a bit tired.' I'll admit the name Chronic Fatigue Syndrome does little to help matters, which is why you'll find a high percentage of us ill folk would rather gouge our eyes out with a table tennis bat than call it that. This is why we end up with this strange hybrid ME/CFS - doctors don't seem to like referring to it as M.E, patients hate CFS so we end up calling it a mixture of the two. That is, unless you're in the U.S. where they have recently changed the name of the illness to Systemic Exertional Intolerance Disease (SEID.) it's little wonder no-one has a clue what the illness actually is. Perhaps if they spent less time bickering over acronyms and more on research the world would be a brighter place. But I digress........

It's not just what to call it that is confusing. Symptoms and levels of ability vary wildly from patient to patient. Some symptoms seem to come and go as the mood takes them, others are far more stubborn and refuse to give us time off for good behaviour. My Twitter feed is awash with other M.E sufferers asking if their latest medical anomaly is caused by the M.E or if they are just plain weird. As a rule of thumb it's usually the M.E but not always. Someitimes it can be something else entirely but try telling that to your GP and the response is likely to be a shrug. 

Fellow Sufferer Anna sums it up most concisely.

So in the interests of scientific endeavour, I bring to you a definitive list of my symptoms. I'm being brave and including everything I have encountered over the past 4 years no matter how embarrassing or unsavoury because I want people to understand that ME is NOT just tiredness. I'd also like to reassure other spoonies that my body is just as crazy and haywire as theirs. Luckily I have learnt to manage my symptoms by pacing myself and resting regularly. When I'm at home I can feel almost normal at times however if I push myself (and by that I mean doing more than I'm physically able, even just being out of bed for more than two hours at a time for instance) then I experience most of these with varying intensity. If I were to carry on pushing myself, as I did in the first year and a half of being ill (on the advice of Occupational Health) then I would find myself in a whole world of agony and pain, which is why any of my rare trips out of the house need to be so short and carefully planned. So here's my list in all its glory. I'm going to start at the top and work my way down - Enjoy!

NB: PEM (Post Exertional Malaise) also called PENE (Post Exertional Neuroimmune Exhaustion) is one of the main defining symptoms of M.E. It's quite complex to explain so I include a handy link here for those interested in learning more.

As well as PEM:
All-over aches and pains
Pins and needles/numbness in limbs
Painsomnia (when you hurt too much to sleep)
Sleep reversal (sleeping all day, lying awake all night)
Interrupted sleep (waking every few hours)
Non-refreshing sleep (waking up more exhausted than when you went to bed)
Strobing in left eye
Hair loss (luckily I have SO much hair it's never been a problem - except for the hoover!)
Hair growth on forehead
Blurred vision
Light sensitivity
Sound sensitivity (I always wear earplugs - sometimes ear defenders too. Stylish!)
Smell sensitivity  (other people's perfume/deodorant is my nightmare)
Cognitive problems (brainfog) - poor memory, poor concentration, inability to communicate properly, struggling to remember the right word.
Poor motor skills (at one point I had to teach myself how to use scissors again.)
Poor balance leading to clumsiness
Numb face on left side
Pins and needles in face
Yellow tongue
Weird sores at back of tongue
Sore throat
Swollen glands
Tooth pain
Bleeding gums
Unquenchable thirst 
Stiff, sore neck 
Aching shoulders 
Rapid, racing heartbeat
Hot flushes
Hot and cold sweats - inability to regulate body temperature correctly
Night sweats
Swollen lymph glands
Strange-smelling sweat (for a while I smelt of cottage pie)
Red rash under armpits
Liver pain
Kidney pain
Diaphragm discomfort (not THAT kind - shame on you!)
Something I can only describe as 'iron ribs' because it feels like wearing a metal corset
Bloated stomach
Occasional nausea
Developed intolerances to wheat and lactose
Alcohol intolerance (managed to wean myself back to the odd glass here and there. Priorities, people!!!)
Bad farts (lactose intolerance at its finest)
Irritable bowels
Bleeding bum hole (classy)
Weird scabby hair follicles on my upper legs, bum, shoulders and face (Oh, the glamour!)
Recurring thrush (I had this little gem for a year straight. Very thankful to see the back of that symptom!)
Peculiar periods (I'll spare you the details)
Needing to wee all the time
Stiff, heavy leaden legs
Pain behind left knee 
Pain in arms
Weakened and poorly functioning limbs
Sore, painful hands
Swollen hands and feet
Poor circulation in hands and feet

Oh yes, and of course fatigue. The sort of bone crushing, will-sapping fatigue that leaves you too exhausted to even answer a simple yes/no question. 

I think that's everything but then my memory is not what it used to be. Blame the brainfog!

If you've made it this far the. I salute you almost as much as I salute myself for putting up with this whole heap of poo. As I said earlier, with careful management of my daily routine and my diet, I am able to function a lot better these days. I may not be able to do a lot but I don't let that worry me. Instead I focus on what I can do. Hence why I'm dressing as a Princess again for M.E Awareness Day. It's a fun way to raise money without stressing my brain and body out too much. If you've donated already then I am extremely grateful for your support. If you haven't yet then please think about sparing a pound for me and my M.E. Let's face it, if I had someone to donate a pound for each and every one of the symptoms listed above then that would be quite a nice little amount for my chosen charity.

or text MPIX75 £1 to 70070
You can also donate more via text by changing the amount to £2, £3, £4, £5 or £10.

Sunday, 26 April 2015

Milestone #3

It's taken me a while to write this milestone up for various reasons which I'll go into later on in this post. This particular milestone is one that I had been looking forward to for quite some time as it was a major step for me. In the past few years I have only managed to spend time at other people's houses a handful of times. Being in environments I'm not used to puts added pressure on my brain because of the extra energy it takes to process all the new sights, sounds, and smells. This is why I get on much better at home because I'm used to everything around me and so it's easier for my brain to cope, which means my physical symptoms are less severe too. Recently I have managed the odd cup of tea at my in-laws but for the past couple of years I haven't been well enough to have a meal away from the house. This has unfortunately meant me missing out on many family dinners, not to mention meals out at restaurants or even catching up with friends for a coffee, so you can imagine my excitement at my latest goal, which was to go to my in-laws for a family meal on Easter Monday.

I'd been working up to this for a while by going round there for a cup of tea every couple of weeks to refamiliarise myself with all the sensory stimuli of being in their house. I also knew there was a spare room available for me to go and rest in whenever I needed. It felt pretty strange knowing I was going to be leaving the house for a few hours, probably the longest I've been away from it, apart from hospital visits, for a couple of years. I packed a rucksack full of essentials ready for the outing and again it felt strange that I needed to consider taking all these things just to be able to manage leaving the house for several hours. That was my eye mask, my ear defenders, medication, a blanket for warmth, gluten free snacks in case my energy levels dipped too low whilst waiting for the food to be ready. I even took Bunbury, my cuddly rabbit. You might wonder why a fully grown woman needed a stuffed animal but actually Bunbury provides several very useful services. He provides extra warmth when I cuddle him and also there is the comfort of having something familiar and furry to hold onto when I'm resting in a strange place. The main reason I took him however was because he smelt of me, and of my house, and I knew that I needed something to combat the smells of my new environment. Even the smell of a different washing powder on bedsheets has an effect on me so my plan was to lie in bed with Bunbury pushed right up next to my nose so that my brain had familiar smells as well.

Spoonie survival kit.

So to try and cut a long story short, I made it. I managed to sit and eat a delicious Easter meal around a table with six other adults and two small children. Quite a feat of endurance for me actually and the only way I managed it was by spending all the time I wasn't eating in bed resting. Even then it was very hard work on my brain and body. You can see the effect on me here in the photos below - the first taken soon as I arrived. I headed straight for the spare room to rest and as you can see I'm still quite bright eyed and bushy tailed with excitement to be on my adventure. The second photo was taken midway through the meal when I was resting between the main course and the dessert. Then the third photo was taken just after. There's only a total of three hours of time elapsed between the three photos and I think you should be able to see the difference, even though appearance-wise I always look a whole lot better than I feel. Still, despite the obvious toll on my health, I had made it.

Three hours of being out of the house - mainly in bed, resting.

I had hoped because of my careful planning and my resting so much whilst I was out that the payback wouldn't be too severe. Unfortunately that wasn't the case. It hit me quite hard that evening and again for the next two days I was pretty much bedridden. Even though I was elated that having achieved my goal I felt very low that I should have to feel this terrible just to spend a few hours with close family. On top of the payback, I also had a poorly husband to try and look after. He'd managed to pick up a terrible virus and for once looked more ill than I did. It was definitely a case of the blind leading the blind as we tried to look after ourselves as best we could. We pretty much survived on ready meals that week as neither of us was well enough to do anything at all to prepare food. 

By the Thursday I had almost managed to get over my payback and was starting to feel more like my usual levels of energy. I'd also started to feel a bit better about the whole situation, reminding myself that actually there wasn't just the meal on Monday to factor in because the previous week I had the hairdresser round on the Tuesday, as well as my parents visit on the Friday,and a friend visit Saturday evening! It was probably the busiest week I've had in a long, long time. In hindsight I knew I should be really proud of having achieved so much in such a small space of time. Also I realised that I simply wasn't used to sitting up at at table with that many adults. I also wasn't used to being around small children for that length of time. It was the longest I've been out of the house for several years and I had all those new sights, sounds and smells to content with, also my rest room whilst very comfortable was two flights of stairs away from where the meal was. With all my rest stops, my poor little legs unused as they were to such exercise, had actually managed rather an epic amount of stair-climbing. All things considered, it's no wonder the payback was so severe. It's actually a testament to how well I manage my symptoms day to day that I haven't had payback that bad for quite some time. It shows I've got really good at my pacing because when I am at home I'm able to rest and recover exactly whenever I need to. 

Success! A happy Mookpixie with a slap-up feed.

In fact I don't think I've quite realised until now, writing this blog post, just how much I managed to achieve. It's hard when you're in the grip of payback to focus on the positives and it's also been hard for me since then because on the Friday I started coming down with the terrible virus my husband had. Even with all my M.E symptoms and having been ill constantly for the past 3 1/2 years, it's fair to say the past two weeks have been awful. I felt the illest I have felt probably since I first became ill with M.E. I'm pretty much over it now although my sinuses are still very inflamed and I sound like I'm talking down a toilet roll. It's been a tough few weeks however now that I'm over the worst I can see yet another positive to being ill on top of my usual ill. The fact that my body managed to fight off such a horrible virus, in probably around the same amount of time it took my fit and healthy husband, gives me hope. I'm very proud of my little body for coping with it all. At one point I had a high fever which I always take to be a sign of the body's defence system is fighting back so I am glad that my immune system is still able to operate and function semi-normally. And as to achieving my goal of going out for a family meal, I know that the next time won't be so hard and the time after that will be even easier, because my brain and body will get acclimatised to what's involved and slowly but surely, I'll get there. I may be slow but finally I'm heading in the right direction and it feels amazing.

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Sunday, 22 March 2015

Milestone #2

Earlier today I got my good man to drive me to Alexandra Park so that I could enjoy the view in the glorious sunshine. Not a milestone in itself as I have managed to do this two or three times in the last year however today's trip was slightly different. It was the first time I'd been there since being awarded my blue badge. This meant that we could park in the disabled space next to the viewing point, only a very short walk from the benches, so I didn't need to take my wheelchair.

Me doing my best 'normal person' impression at Alexandra Park
I had my trusty walking stick to help me travel the few paces to where we sat and it felt really good to be unhindered by metal and wheels. People look at you differently when you're being pushed around at ground level - you can almost hear the cogs whirring as they try to deduce whether your disability is physical or mental. Often they're afraid to speak to you in case it's the later, heaving an almost audible sigh of relief when you open your mouth and they realise that you actually are able to string a sentence together. Admittedly, my dress sense doesn't help. Squirrowl hats and fat bee coats do make me look a little peculiar, as do the fairy lights on my wheelchair. Lucky really, that I'm sat on my magnificent personalised livery (thank you Hoggit!) - if they saw 'Princess Charlotte's chariot' emblazoned across my seat cover then they'd definitely assume I was a few sandwiches short of a picnic. 

Anyway, it was great to get out for a bit of fresh air and, apart from the walking stick and the ear plugs, I could have passed for a healthy version of myself. Here's looking forward to the day when I don't need those either.

Wednesday, 18 March 2015

Milestone #1

I've decided I need to start blogging about all the little milestones I pass as my health starts to improve, more so for my own record than for anything else. Nothing fancy, just a quick note and a photo to mark each occasion to celebrate. When you have a chronic illness any reason, no matter how small, is reason enough to get the bunting out.

So here is a fairly innocuous-looking photo taken from my front step. Not much to get excited about? Think again. 

For the first time in probably 2 years or more, I managed to walk (avec le stick) to the end of my road - symbolised here by the orangey glow of the streetlight, a literal light at the end of the tunnel. It's not far, just a few metres really but until today I had only got as far as halfway before summoning my chauffeur-driven wheelchair to carry me the rest of my journey. 

For some reason today, I wasn't really paying attention to how far I had walked. Too busy chatting I suppose. I looked down and saw I had reached the drain cover marking my halfway point. For a split second I faltered, ready to call on Mr Mook and my chariot. But no. Sod it, I thought. I'm going to walk TO THE END OF THE ROAD!!! 

And I bloody well did!

I'm paying for it now but it was worth it to tick off another goal on my growing list of exciting adventures.

Thursday, 15 January 2015

A Different Kind of Tired

I wrote this fairly recently and given yesterday's nonsense in the papers about M.E, it seems a fitting time to post it here. I'm extremely lucky that I haven't had to deal with comments like this from my loved ones. Many of the friends I have made through having M.E unfortunately have. Some have had a lot worse from those who supposedly know them best. Here's to a future where all sufferers are given the understanding and support they desperately need to improve.

A Different Kind of Tired

Whatever you think or believe about M.E,
Take a moment to consider what it's like to be me.
This isn't just tiredness - sleep won't make it go away,
So when you say I'm tired, I am but not in that way.
I'm tired of being laughed at and I'm tired of being ignored,
Tired of spending life alone too ill to go outdoors.
I'm tired of resting all the time, I'm tired of being bored.
So tired of wondering how I'll pay the bills I can't afford.
I'm tired of having to prove I'm ill and that I am not insane,
Nor am I lazy or depressed, I hear myself explain.
I'm tired of saying the same things over and over again.
I may look okay to you but I spend each day in pain.

A walk will not help me as my legs don't work so well.
It's not fresh air that I require to deliver me from hell.
I don't just need to 'get a grip', 'buck up' or 'a good shake'
I don't enjoy being shut away - I'm ill for goodness sake!
I'd hope you know me well enough to trust me when I say 
I am doing the very best I can each moment of every day.
So yes, I'm tired. I'm weary because you still don't understand.
You think it's all my fault and that I just don't give a damn.
But it's the doctors who are wrong - they've not been trained to care.
As far as they're concerned, they think there is no real illness there
And this is why I need research for treatment and a cure. 
I'm so very tired of waiting, I shouldn't have to fight any more.

I need my strength for getting well. I need you at my side.
I need you to believe in me, I have nothing left to hide.
This is me, this is my life - I look from rainbows when it's raining. 
I'll make the best of what I've got but I'm too tired to keep explaining.
You're either with me or against, I've not the energy to waste.
If you can't except I'm ill then consider yourself replaced
Either offer me support or take your views and go to hell.
If you won't help me when I'm sick, you sure can't help me to get well.

© Charlotte Green 2015

Tuesday, 13 January 2015

Re Vera (In Truth)

It's a hard day today. Today is my Nanna's funeral and because of my illness, I won't be there. She passed away on the 4th January at the ripe old age of 99. She had been in hospital, slowly deteriorating for several weeks so it was expected but as you can imagine that doesn't make it any easier. In fact, in many ways it was much harder. 

Ever since I became too ill to travel I have had this day at the back of my mind. I always knew it was likely to happen. If I'm honest, I dreaded it. To not be with my family, saying goodbye to her seemed too cruel to contemplate. Aware that each time my parents brought her to see me might be the last (another cruelty that in her elderly, frail condition it was her that had to travel to see me) when it became time to say goodbye, each time I would hug her just a little longer and try to memorise her face, what she was wearing, the things she said to me.

So here we are, finally. The day I feared would come, and I shall say my goodbyes at home in my own way. It will suffice because it has to. The hardest part will be knowing I am not there to support my mother, give her the hug she so deserves. 

My parents asked me to write a poem for the order of service so I could be included in some way. I am thankful that I managed to write something half decent - the pressure of knowing it may be read out today was a little daunting. My mum told me they would have to find someone who could read it without crying! It's called 'Re Vera' which is Latin for 'In Truth', which I thought fitting because Vera was her name. Interestingly, it's also Albanian for 'Summer'. I like that. That's how I think of her - endless warmth from her embraces, her love enveloping me like the slow heat of the summer sun. I shall miss her so very much.

Re Vera (In Truth)

I won't cry for you -
You're no longer in pain
I'll cry because I'll
Never see you again.
I'll cry that I miss you,
I'll cry now you're gone.
I'm sad that you had not
The strength to go on.
But I'm not sad for you,
You are finally free.
You're with all your friends
And you're with family.
You're up there with Grandpa,
Kate and Peter too,
With Edith and Audrey
To take care of you.
They'll love you and keep you
As safe in their hearts
As I will until
We're no longer apart.
It's their turn to have you,
We've kept you too long
So I'll try not to cry
Just because you are gone.
Age cannot stop you,
You're free from its chains.
No more will you suffer 
Its cruel aches and pains.
I'll cry because I miss you
And need the release
But I won't cry for you,
I'll be glad you have peace.
Though you're not here to hug me
Or dry all my tears.
I feel blessed to have had you 
Almost 40 years.
So sleep well dear Nanna,
For now you must rest.
You'll always be with me,
I will never forget.

© Charlotte Green 2015

Saturday, 3 January 2015

(It will be) Oh Kay

My first poem of 2015 is inspired by the gutsy Chestnut Kay. I thought the image of the Phoenix was fitting for us chronically ill types.

(It will be) Oh Kay

I take each day as it comes,
Take each day one by one.
Grit my teeth and flex those guns,
Howl at the moon and bang the drums.
Then step-by-step, bit by bit,
I'll haul myself out of this pit.
Bit by bit, step-by-step,
I'll prove I'm not beaten yet.
Slowly, slowly will I creep
Till my body lets me sleep.
At a snail's pace I'll rise.
I will regain a pain-free life.

© Charlotte Green 2015