Thursday, 18 July 2013

The Aftermath

This will be my last post for this month. 

You'll have perhaps noticed that this is Post 4 in as many days so I'm really pushing my luck with Mr Brain. Two of the posts were written weeks ago and just needed to be published but the other two (yesterday's and today's) were more spur of the moment. I'm doing it for something to do. Summer is a busy time in our house as it is the busiest season for the family business. With everyone so busy I'm here on my own a lot so I'm extra thankful to have my online community living in my iPad. 

Today isn't so good but that's to be expected after yesterday. Tomorrow and the next day won't be too wonderful either but ho hum. My heart is beating overtime, my legs feel full of concrete, it feels like there is poison running through my veins, I feel very sick and lightheaded, I'm a dead weight today. It's a slumped-on-the-sofa day; struggling-to-get-myself-a-drink-from-the-kitchen day. 

My 'What a difference a day makes' post has already shown how the aftermath of a couple of hours of being 'active' knocks us poorly people for six, but I thought a video might be good too. Yesterday I was out of the house for less than an hour. You might see that things have really come on since I made that post in January. I'm not in bed for a start and I can talk. Hooray for progress! 

Those of you familiar with the sound of my voice will know that today it doesn't sound quite right though. My breathing isn't wonderful and my eyes don't look like my eyes usually do. I sat up (almost straight) for you in the video (if only so it didn't scare you all off with my multiple chins by recording at an odd angle) but I am struggling with being upright today. 

Still, I'm not looking for pity. I'm a tough cookie. I'm just trying to help you understand.  

See you in August.

Wednesday, 17 July 2013

The Adventure of Anna Jones - Operation Ice Cream

At the end of May I set myself a Summer Target. I aimed to drive the six minute journey to The Meadows, park the car, walk to the ice cream van, buy an ice cream (using money and everything!!!!) eat said ice cream and then drive home again. 

With M.E and suchlike chronic, and ridiculous, illnesses everything has be broken down. It is not as simple as 'making a sandwich' or 'running a bath'. Every little thing, from turning the page of a book to pressing buttons on the TV remote, takes up energy, or one spoon if you like. 

So this Summer Target is a big deal. Not only does it require me to tackle the task of driving, I then must actually perform another task; a task I have not done by myself in a long time. There have been a couple of post office trips and then the day I sat by the river for a couple of minutes. This is the whole shebang! I will also be dealing with money which is something I didn't have to do at the post office (free post) and then I have to drive home again afterwards. 

Today's the day - 17/7/13 

I had started to change my mind about whether I wanted to do it, and not because I couldn't. It suddenly all felt extremely pathetic. I'm a 24 year old woman whose only life goal at the moment is to drive to buy an ice cream. Then I pulled myself together. If I wasn't ill it wouldn't be such a big deal and I'd do these things without a second thought, but I am ill and so it is a big deal. 

When I got up this morning I decided that today was the day, health obliging. Leaving the house on my own and locking the door behind me was something I hadn't done in a very, very long time. It felt a bit weird because it's such a normal thing to do. The drive was okay. I think I was nervous and there was more traffic than usual because I tend to go for my drives in the evening. I reached my destination in about 5 minutes but...

Here goes everything! Pascal my noble steed, Blue Badge, ID bracelet, purse 
...the ice cream van wasn't there. Does The Ice Cream Man not realise what day it is?! It is Operation Ice Cream day no less! 

I parked, displayed my Blue Badge and plonked myself on a bench in the shade. Now that I was there I felt a bit watery eyed. "I'm here. On my own. I'm outside on my own" was what I jotted down on my iPad. (I took it with me to use the camera.) 

The River Welland
It felt like a daydream. As I sat on that bench I had to pinch myself that I was out in public alone. Independent. Right at that moment I no longer cared if it was pathetic or silly or whatever, because it wasn't. Not to me. It was a milestone. I didn't care what people might think of me shuffling around on my own. They don't know my story, just like I don't know theirs. 

I have been largely cooped up for almost three years. Not due to social anxiety but due to a neurological disease that affects every system in the body. 

I went for a 'little' walk, which I probably shouldn't have but I'd decided to give The Ice Cream Man some time to get there. I didn't want it to be a wasted trip. Thankfully I spotted a new (it probably isn't new anymore but it's new to me) shop by the river. 

Is it sad if I keep the stick?
They sold ice creams! The Ice Cream Man might not have realised how important today was but this little shop did. Hooray! And no queue! And the young man behind the counter told me to have a nice day. I wanted to hug him and tell him it was already such a wonderful day but I realised if I filled him in about Operation Ice Cream he might think I was on day release from the asylum. The poor boy was probably already a bit wary of me as I had tears in my eyes, was sweating A LOT (from the heat) and my hands and arms were shaking (due to the adrenaline) so I thought it best to just thank him and wish him the best too.

Yes I was wearing sunglasses over my glasses...and yes, those are a pair of Manchester United flip flops. They were the cheapest I could find okay!
I couldn't take in what I had achieved so I'm not sure I actually enjoyed the ice cream but I DID IT! 

Operation Ice Cream. Mission Accomplished. 

Tuesday, 16 July 2013

Back in the driving seat

Driving has been a part of my daily targets and baseline routine, on and off, since May 2012. (On the rare days where I am seeing friends I don't tend to do my drive because I swap it for chatting and laughing. I can't have it all!) The stretches that I try to do daily have played a big part in my being physically strong enough to drive again and those sudoku puzzles enabled me to start reading again which has led to a general improvement in cognitive function, on the whole.

Super sensible as always. I started slowly with a drive up and down a private road

To catch up on my first post about driving click here.

Three weeks ago I reintroduced 'Driving' as one of my baseline targets. It hasn't taken me as long to get back into the swing of it, not like when I started driving again for the first time since The Beginning. It isn't as straightforward as 'Driving' though is it? Not for an M.E. sufferer. 

Your legs and feet need to hover over the pedal and apply the correct amount of pressure to maintain
a certain speed. Your left leg and foot need to be strong enough to apply pressure quickly to the
clutch when you need to change gear. Your arms need to, not only stay on the steering wheel and keep the car going in the correct direction, but also move the gear stick and release or apply the hand break. All this while your neck is turning your head and your eyes are moving in your sockets so that you can see your surroundings. 
The CFS clinic once asked what my main goal with regards to recovery was. My answer was simple to be able to drive again

As for Mr Brain, well! He is remembering all of those basics; red means stop, green means go, give way to your right, stay in the left hand lane to go straight over a roundabout unless it states otherwise, be constantly alert for pedestrians and other vehicles, mirror signal manoeuvre. Plus Mr Brain is instructing Mr Body to carry out his job properly too. (I'm not sure why I've decided that they're male...) 

It's all a work in progress. I couldn't drive myself to a doctors appointment or cope with rush hour traffic just yet, but that doesn't matter. It's not a race. Just being back behind the wheel, as and when, is wonderful because it's something I had tearfully declared I'd never be well enough to do again. In your face M.E! 

Sometimes I go all out and listen to music AT THE SAME TIME! Poor Mr Brain
Let's see how long I last behind the wheel this time...

NB. All photos were taken when the car was parked, obviously. 

Monday, 15 July 2013

Solitary confinement

Recently I've been thinking about my single state, for no reason other than I've been single for quite a long time now actually. It's quite a lonely life. Solitary. M.E. is to blame for more than just a few relationship breakdowns, be it between a husband and wife, parent and child, brother and sister...

Luckily I have always been okay in my own company. I'm actually a big fan of the single life and it suits me and my poorly life very well. "Don't rely on anyone else for your happiness and self worth..."

Romantic comedies are starting to grate on me though, or any film where the guy gets the girl really. That's another reason why I stick to children's films, although even Shrek and Fiona ended up happily ever after... Why, subconsciously or otherwise, is that our life's goal? Why is society obsessed with the fairy tale ending? We are all so caught up in finding our other half? That implies that until you do, you are incomplete and you aren't yet whole. 

It's quite hard to meet new people when you are mostly housebound. There's online dating but I'm not actively looking for a relationship. I couldn't physically go on a date just yet anyway. (I know you can mould things around the illness, DVD nights I stead of the cinema, etc, but it's the actual chatting and just being around people that still exhausts me.) My health wouldn't allow it. I barely see the people I already know never mind trying to see new people/potential boyfriends. 

It's also hard to feel beautiful when you feel so broken and rotten on the inside. People tell you that you're pretty and you look lovely even when you don't. It annoys me; that falseness when everyone is branded as incredibly attractive when they aren't. It's okay. Just be honest. We can't all be aesthetically pleasing. We can all be beautiful in other ways.

Past relationships have taught me that I should not settle or mould myself to fit someone else. I will no longer compromise myself like that. This is me. Take it or leave it. Like it or lump it. And if you do like it, you'll have to take on the sack of potatoes look, oversized jumpers and baggy skirts, the works. Just call me Frump Girl! I'm not well enough to faff around grooming myself and if I do it's for me and nobody else. 

I need a carer more than I need a boyfriend and I wouldn't be happy with that; I struggle with being so dependent on my family and I've known them all my life! It's not the kind of first impression I'd want to make. I don't feel it would be fair, especially not straight away. I'd have to be honest about my health and all that comes with it. It's not like I can hide it. It's hardly surprising that people might run a mile.

So, anyway, I got to thinking...

Does my illness make me unattractive? Is it too much baggage? I think it is. My life isn't straight forward and that would automatically make a relationship...not straight forward. Does having a disability cancel out everything else about me? (Because I am a disabled person whether or not we like to admit it.) 

Does it write me off? 

I'm not even going to go into the topic of marriage and children and parenthood. On the one or two occasions it's been brought up the response is always along the lines of how young I still am and how I will get better and how I don't know what the future holds. I hope they're right but I do have to be more realistic than that. Will I be physically well enough to carry a baby full term never mind care for a child until it reaches adulthood? 

In truth being a single spoonie has it's perks. I rarely have to attack my legs with hair removal cream and the weight gain is proving to be useful as my tummy makes a great place to rest my iPad on when I'm using it. Silver linings eh?! 

It can just get a little lonely. A bit of companionship would be nice.

Monday, 8 July 2013

The Dining Room Days

Today has been a very teary day and all because of a pair of yellow shorts.

Yesterday, as I was sat in the garden with my mum and sister, we laughed about my outfit, as usual. I have, and always have had, strange taste apparently. But then we realised that the yellow shorts i was wearing had been bought nearly two years ago, when I was deep into my full blown, serious and horrific relapse. After only a few months of being back in my beloved bedroom and starting to get a bit of control back from the M.E, it all came crashing down and I found myself back in the dining room. This time my parents went out and bought me a proper bed because it was obvious that I'd be there for some time.

Christmas Day 2010 during my first stint in the dining room. Second time around it was converted into a proper bedroom with a bed, drawers and all that! It was during my second stay in the dining room that I had to have my hair cut very short 
The activity diary entry from that fateful day. Those of you who know me will know that that isn't my real handwriting...

It wasn't the first time I'd had to move downstairs. In The Beginning I set up camp on the dining room floor but I can't remember how long I was stuck in the dining room then. October 2010 until ? -  It'll be written down somewhere but those diaries are too painful to read and whatever is written is mostly illegible because my arms were too weak to write properly.

Anyway! The yellow shorts. 

I remember that day very clearly. Saturday 6th August 2011. I'd been able to use the stairs and sleep in my room for a couple of months which was fantastic! I'd come downstairs to find my brother had had friends stay over so I hid myself in the dining room (which was actually a dining room at the time, not a bedroom) and shut the door. I didn't want those visitors to see me when I couldn't string a sentence together. I used to work with them and it felt embarrassing for anyone to see that new version of myself. 

I started to feel really poorly all of a sudden and tried to shout for help. I felt like I needed to be in hospital. Nobody could hear me because I wasn't able to speak louder than a whisper. Instead I tried to knock over a pile of DVDs that happened to be on the dining room table to attract someone's attention. I wasn't strong enough to push them over though so just kept trying to shout loudy enough for help. I'm not sure what I wanted them to do if they heard me but I honestly felt like I could be dying. After an age my sister heard me and help came. 

I'd been umming and ahhing about moving back downstairs again but the decision was made for me that day. It was the scariest day of my life.

This second stint in the dining room was perhaps worse than the first but I have little memory of The Beginning. I spent my days in my dining room bed, often being wheeled to the bathroom, rarely being able to shower and having to use mobility aids when I did, not being strong enough to pull my own knickers up my legs and so needing help to get dressed, being spoon fed and even having my teeth brushed (a rather messy but highly amusing experience!) I lost track of how many times I watched Despicable Me on DVD... 

And now here I am, nearly two years later, laughing about it. Those days are very much a blurr to me. I was too ill to realise the severity of things and I'm glad it was that way. But for my family...I can't imagine what it must have been like. I stayed in the dining room until the end of November 2011 and I've managed to stay back upstairs in my beloved bedroom ever since. The CFS/ME clinic had predicted that relapse because I was so severely affected by M.E (they didn't tell me though so I hadn't seen it coming!) They're confident things will never be that bad again. How they know that I have no idea...

Writing this post made me sob my little heart out. I haven't thought about those days properly or analysed them before. But those little yellow shorts brought it all back. My mum and sister had had to go out and buy some extra comfy and easy to put on clothes. They were two sizes too big at the time, as were the other rather unattractive collection of items they bought. (All of which now actually fit a little too snugly...) Those yellow shorts reminded me of The Dining Room Days. I feel sad for me and sad for everyone else affected by this dreadfully misunderstood and horrendous illness.

Looking back to two Summers ago I can see how far I have come. I have come SO far. I'm not even half way through my M.E journey but I mustn't forget about the incredible progress there has already been. It hit me that here I am today, not only dressed but sitting outside and managing to read a book! What a difference! What huge progress! 

So I have a long way to go? But if I can keep going and pick myself back up after such a serious relapse then surely I can keep going through anything? 

Bring. It. On. 

Friday, 5 July 2013

Learning curve

For two and a half years my days have mostly centred around having a shower; the build up to it, the actual event and then the aftermath of performing such a strenuous and exhausting task. I talk about showers a lot I think. Sorry! 

Recently I changed my routine. Instead of showering in the late morning or afternoon, and then wiping out the rest of my day from the exertion, I've started to shower in the evening. Showering in the evening means it's perfectly okay to crash into bed afterwards. Plus, because it's nighttime I'm allowed to go to sleep. 

I think it helps me sleep too, this change of routine. Hooray! What a genius I am. 

The only downside is that the current night sweats are pretty gross and so I could probably do with showering again when I wake up but that would require more energy than I have. 

It's been a busy few weeks, for me anyway. I think I did something, be in seeing friends or going to medical appointments, at least once a week throughout June. I only had one or two bed days. I also realised that I haven't had to cancel any plans since January. That's very good indeed. 

I admit though that I am waiting for it all to come crashing down again. I wonder if I will live in fear like this for the rest of my life? Always wondering and waiting for the next crash or setback or, god forbid, full blown relapse. Over the last few days I've struggled with the stairs and have felt 'on the edge' as I call it, a feeling where everything inside feels like it's at war and you wonder whether you've been running on adrenaline just to keep up with the busy month of June. It's a sign to be careful and to be extra kind to myself and my poorly body and broken brain. 

I think I find summer the hardest. I hear a lot people struggling with the dark, dreary Winter months but for me Summer is when I miss out on most. Picnics. Beach days. Cricket watching. Going clubbing in your flip flops. BBQs that go on until the early hours. Freedom. The fact that things carry on without you when you hoped you might be irreplaceable...

Rocking the bum bag, in the days when I could roll up a bouncy castle by myself
Summer was always my favourite because of work. In recent years my parents have taken over the running of a children's holiday camp but I've been attending or helping and then working there since the age of 4. 
Fancy Dress Fridays

In my final year at university I did a bit of the admin side of things too. I can't even answer my own phone now nevermind the office one. This being my third Summer without the fun of the camp the pain has lessened considerably but I will miss the friendships with the staff, the impromptu nights out, the children, the camp overs... I am so far removed from it all now because of the good old M.E. There are few feelings worse than that of being replaced. I used to be important. I doubt there will be tears over it this year. The first was incredibly hard and, being new to M.E, I'd hoped I could be there. Now I've come to accept this life-changing illness for what it is: life-changing.

Alas I am plodding along and have much to smile about. My brother is home after graduating from university and he's decorated my bedroom for me. A change of scenery for those wretched bed days!
Going green, thanks to my lovely brother
This evening, all going to plan, I am finally off to see my friend's new house. I have started once again with the painstakingly slow task of driving. My goal for the Summer is to drive the five minute journey to The Meadows, buy an ice cream and drive home again. I dream big! I also invested in some comfortable garden furniture so that even bed days can be spent outside in the fresh air, M.E allowing. 

That's where I am now, outside with my blanket, the sunshine, my coffee and just the birds. 

Monday, 1 July 2013

Spending my spoons

I often think about how I spend my spoons or how I should be spending them.

It's all selfish spending. Healthy selfishness the CFS/ME clinic call it. Doing things for yourself to gain independence and self worth; having a shower (to be honest it's probably best for everyone if I spend my spoons on being clean), seeing my friends, watching a DVD, making myself a drink...

So I spend the few spoons I have on myself and on things that are for me. I wish I had enough going spare to spend on my family though.

It sometimes eats away at me that I cannot express my appreciation to my family for all that they do, and have done for me. My mum always replies that they're all just carrying on as they would, as any family would. She always replies that I would do exactly the same for them if the tables were turned. But I can't help but feel helpless in showing them how grateful I am for all of it. For the ferrying me around to medical appointments, cutting up my food, cooking and cleaning for me, being my shoulder to cry on, helping me along on the harder and sadder days... 

The other day I did something that is only a drop in the ocean compared to all that they've done, and continue to do, for me. It is a start though. 

I emptied the dishwasher! And then I reloaded it! (And then I shed a few tears of happiness because I'd done something to help for the first time in years.)

It's silly I know but it's a big deal to me; to try to do something, anything, to help. Our house gets very busy in the run up to Summer because my family runs a holiday camp in the holidays. With everyone so busy, having to do one less household task is always welcome. It's appropriate that it happened to be the dishwasher. My mum often jokes around when I'm in the kitchen and reintroduces me to it because I haven't used it in so long. 

I never did much around the house before I was ill. I was lazy and I'm definitely not housewife material!

Everyone was out and I didn't want them to come back and face having to deal with all those dirty dishes once again. So I gave it a go. Sometimes I put the odd glass in the cupboard if my mum hands them to me, and for a while one of my targets was to put my own mug in the dishwasher but this was the whole thing.

All the bending and stretching and stooping and carrying and coping with the noise of clattering cutlery... It took me a while but I don't think it was too much. Not in that moment. I couldn't do it every day, not even every week, but I did it that day.

I used my spoons to do something that wasn't for me. Doing the dishwashing might seem like a ridiculous way to give back to one's family but to me it is a mammoth task and that just makes it even more of an accomplishment.