Wednesday, 27 November 2013

Beating the Birthday Blues

This is my fourth poorly birthday. I have very little memory of my 22nd. I was diagnosed a few days before and all I can remember of my 'celebrations' was sitting in a red chair under a blanket surrounded by my family. All my other plans had had to be cancelled but a few of the girls still came over with takeaway pizza at some point.

For my 23rd I had a Children's Tea Party for my birthday complete with piƱata, pin the tail on the donkey and pass the parcel. I was embracing my childlike state! 

Last year I had a Virtual Birthday Tea Party where my friends from across the country celebrated with me by eating cake and drinking tea via the lifeline that is the Internet.

This year I was too poorly on my actual birthday to celebrate virtually or otherwise. I won't lie, it wasn't the best. Birthdays aren't what they used to be and now I have reached the grand age of 25, my silver anniversary with Life, I couldn't help but think of how I'd imagined my life would be by this age. 

But I rescheduled my birthday (you can do that you know) and last weekend my extended family came over for the day to celebrate with me as best as we could. It was wonderful! I don't know about you but when there's a buffet I seem to lose all self control, so a lot of food was consumed. It took me four attempts but I managed to blow out my birthday candles too! Quite a mean feat on a quite poorly day. 

Any plans I make have to be spread out to give me the best chance of 'survival' so I've had this week 'off' ahead of celebrating my birthday with my friends at the weekend. 

For me, pyjama days mean I am too poorly to get dressed; I don't have enough energy to take off my pyjamas and replace them with what I now call Real Person Clothes. As M.E. doesn't seem to have any regard to special occasions, there is every chance that when I celebrate my birthday with my friends this weekend, I may be too ill to get dressed. Rather than be prepared to cancel yet another engagement, my friends and I had an idea...

Pyjama Party! 

So here we are again, embracing the poorliness and not letting it deter or beat us. If I'm too ill to get dressed on Saturday it won't matter, because my friends will be dressed in their pyjamas too. And after they've left and I've inevitably crashed, I can crawl upstairs and get into bed straightaway because I'll already be ready for bed. Genius! 

So I can't go out for a meal or go clubbing or go ice skating or whatever else I might have wanted to do, but I can stay at home in my pyjamas. I've even become quite good at it! 

If you're free, and you want to, why not join us? All you have to do is stay in your pyjamas all day (something many of us do anyway!) but because it's a party you get to eat cake! Send me your photos via Twitter or Facebook to the blog accounts (@theslowlane_ME or M.E. myself and I) and I'll pop them in a blog post next month. 

Saturday, 16 November 2013

Seeing is believing?

Seeing is believing?

Three short phone calls in a week have left me bedbound. (That was more phone calls than I'd usually make in a six month period.)

This is payback. We M.E. sufferers get payback for almost everything. Getting dressed, socialising, making our own meal, washing up...each simple, single task comes back to bite us.

At times I am so weak that my body shakes to the beat of my heart, and as my body moves so too does anything on my bed. I once took a video of a bottle of water that happened to be on the end of my bed and the water inside was visibly sloshing around in time with my heartbeat. And remember there are sufferers who are affected far worse than I am.

Often seeing is believing. So here. See this. One minute of a bad day, where I am so mentally and physically exhausted that I cannot even wince in pain when my knees flare up or turn onto my side to try to get more comfortable. I am so unwell that there is no TV, no reading, no visitors, no chatting online, no texting. Bad days are made up of minutes like this one. There are 60 minutes in a single hour. And remember I don't/can't sleep during the day. I just have to lie here and 'be'.

I'm not doing this for show or for sympathy or to be a drama queen. I'm not pretending or putting on an act for the sake of this post. I'm just trying to help you understand because I imagine it's hard to grasp what I mean by saying it's not such a good day. I have obviously edited the video to cut out the parts where I sit up to turn the camera on and off but that was mostly so you didn't have to endure a close up of my face on days like today! Aren't I kind and thoughtful?! And I have obviously written this post too, but you didn't see how I did it or how long it took me.



If you think it's boring to watch, try living it.

I know everyone has their cross to bear. I know that life isn't fair. But this illness seems so extreme in its injustice.

So when you say I'm lucky I don't have to work, or I'm lucky I get to stay in my pyjamas all day, or I'm lucky I can lounge around in bed... I can't help but think you don't quite understand. Surely you don't mean I'm lucky that I have days like this to endure? And all because three short phone calls have left me so physically weak and exhausted.

If this payback is just from chatting on a phone for a few minutes can you imagine what it's like when I do something more 'strenuous?'

Wednesday, 13 November 2013

Recover's Guilt

Once upon a time I made a friend through a fantastic online forum for sufferers of M.E. We chatted almost everyday either online or over the phone when I was well enough to talk and I confided in this person, during those dark dining room days, in a more open and honest way than I did with my other friends. We never actually managed to meet up in real life but their friendship came to be very important to me. 

I never imagined I'd lose touch with this person, but sadly we have. 

There were times when we wouldn't be in contact before and during those times I would wonder whether they too were too poorly to text or go online. Or were they doing okay; had they gone back to work? Or were they struggling to keep their balance and didn't have any spare energy left for chatting online? Or had I simply been forgotten, having not meant as much to them as they did to me? 

When we last spoke I found out this once close friend now classed themselves as fully recovered. I was ecstatic! While they were not severely affected they had endured years and years of suffering at the hands of this disease and the unimaginable hardships that come with it. As far as I know they are now still living that normal life that we dreamt of; working full time, playing sport twice a week, socialising with friends, and being able to be in a relationship. I am over the moon for them.

But the dynamic in our relationship had shifted. We were no longer in the same boat and for the very first time there was an awkwardness to our conversation that crushed me with sadness. We suddenly had nothing to say and could no longer relate to each other's experiences. 

We haven't spoken for a while and this time I know that our friendship has come to its end.

I don't believe that this person suddenly stopped caring about me. Instead I wonder whether it is because of what I have come to call 'Recover's Guilt?' People I've met during The M.E Years dip in and out of my life but I have noticed a pattern. Those who have recovered have cut all communication. 

Was it too hard to remain friends with someone who was still suffering? Was I a reminder of those painful years of illness? Perhaps they even felt guilty about recovering...

Perhaps they felt that natural need to move on and into the next phase of their life, leaving behind the old one, full of pain and suffering...

Thursday, 7 November 2013

The Adventures of Anna Jones - A weekend away

Everything is complicated these days, or rather, nothing is straightforward, so planning a weekend away requires near-military precision. Apparently it has become a bit like taking a newborn baby away on holiday...with all of the paraphernalia that comes with it! 

Last weekend my sister, cousins and I went away for the night to celebrate my youngest cousin's birthday. 

Little Miss Organised 

It was me who booked the hotel online and I was 'with it' enough to be trusted to do so. This in itself is a huge achievement and shows huge progress! 

In keeping with the 'Three Ps' that were drilled into me by the CFS/ME clinic (plan, pace, prioritise) I wrapped the present three weeks in advance! My clothes were chosen and laid out days before.

I needed to consciously control any nerves and excitement by not thinking too far ahead. It takes the enjoyment out of things but it's necessary if I want to give myself a chance of being well enough to last a whole weekend. The mere task of keeping a tabs of nerves and excitement is an exhausting! Life with M.E. isn't very straightforward *chuckle*

It ended up being a busy week. Too busy really but it couldn't be helped and life doesn't just wait while I have a breather. Perhaps it helped keep my mind off the 'enormous task' ahead. 

Delivery Service 

A weekend away requires planning. Lots of planning. It is a huge undertaking, although it's much more straightforward than it once was. But we make it work for me and make it as spoonie friendly as possible. I have the support of my family and friends and without them I wouldn't even be able to entertain the idea of a getaway. While Not-so-big Sis and my cousins went earlier in the day to hit the shops, I went straight to the hotel thanks to my parents. The journey took less than an hour and we didn't  have the radio or any music on, plus my mum reminds my chatterbox dad that some breaks in the conversation are ideal for me! 

Instead of dropping me at the door, they carried my bags and helped me get checked in. I can get confused about money and instructions and probably wouldn't have remembered the directions the receptionist have me to find my room. I then had some Purple Time while I waited for the girls. 

Moulding to M.E. 

I had my own room, as I have done on the other occasions I've been away, but it ended up being a connecting room with the others so it was the best of both worlds. It allows me to rest properly and if I have trouble sleeping I won't disturb anyone else, and they won't disturb me when I need complete silence. It's selfish (and expensive) but necessary. 


One of the girls stayed and chatted with me while the others made good use of the hotel swimming pool. I felt it wasn't the right time to see if I can still swim... 

I didn't have enough spoons to change into my chosen evening outfit but the main thing was that I was there; I'd made it! And I got to celebrate my cousin's birthday with her. 

I didn't have enough spare spoons to take many photos either, which many of you will know is most unlike me! 

I obviously used the lift instead of the stairs and even the elevator phobic members of our little group came with me. That's love! 

Ready for the next morning, I set an alarm for hours earlier than I'm usually able to wake up. I needed to do this so that by the time we went down to breakfast I would (hopefully) have come out of the zombie-like state that so many of us sufferers are stuck in when we first wake up. 

It is frustrating that nothing can be enjoyed as it was before because I have to concentrate so hard on 'getting through' each mini task or part of the day. And knowing that some people feel responsible for me and feel they are babysitting is also something I'd quite happily live without. My ill health eats away at their enjoyment too because they have to make so many allowances for me. Alas I am so lucky that, after three years, I am still included and loved and cared for and supported.

When I sat in my hotel bed that night I couldn't help but smile knowing that my ultimate favourite girls were right next door and that I'd actually managed a weekend away with them.

Aftermath 

I was away from home for less than 24 hours and I am suffering as a result but let's not talk about the payback. It shouldn't be allowed to take away from a lovely weekend with my ultimate favourites.   


Day 3 post-adventure. Happy chappy!
Previous Adventures of Anna Jones

Both of my previous Weekend Away Adventures were with a couple of my favourite uni girls. On both occasions I stayed away for two nights no travelled furthers rom home. Again, without my parents' I wouldn't have been able to go. 


Reading 2011 and Cardiff 2012

When I went to Cardiff my parents tied the trip in with their half term holiday because I wasn't well enough to travel on a coach with the other girls. They drove me down to Gloucestershire the week before I was meeting my friends in the Welsh capital to allow me to recover from the bulk of the journey. They also stayed in Cardiff incase of an emergency! 

Friday, 1 November 2013

Purpose

"He who has a why to live can bear almost any how"
What is my 'why?' 

I'm not looking for answers. These are just my wonderings...

Do we all need a purpose to live a happy life? Do we just merely survive, rather than live, if we have no purpose? 

I sometimes wonder what my purpose is. I'm profound like that. The things that defined me as a human being are now mostly gone thanks to ill health. I'm no longer a student studying for a degree. I'm no longer an employee or a member of staff. I'm not a homeowner. I'm not a wage earner. So much of who we are is defined by what we do. Well, I don't and can't do very much. 

Being ill has opened my eyes to so much. I have become exposed to suffering and negativity that I didn't know existed. I had my first taste of how cruel life could be when I was just five, when we lost a family member who was too young to be lost. At the time I was too young to understand and my faith helped to explain it; She was too special to live on earth so she was in heaven. 

I no longer have such faith. I no longer believe that everything happens for a reason. Instead I see that there is no rhyme or reason for much of what life throws at us. Life is cruel and unfair and people suffer for no reason. As I get older I see how life can be so harsh. There is only so much positive thinking can do to paint a brighter picture. And there is nothing we can do about it. It is out of our control. 

So how do we get through? What makes it worthwhile? What's the point? Surely we all believe there is a point to life or we just wouldn't bother to constantly better ourselves? 

You could say that my purpose is to recover from illness. But how do you recover from an incurable illness? When I wrote I'm not okay I wasn't sure there was any point in continuing with the CFS/ME rehabilitation programme. I couldn't see the point when I am still so severely affected three years in. The truth is I'd be too disappointed in myself to throw in the towel now, so I didn't. 

Perhaps my purpose is to find the balance between hope, despair and reality...

What makes life worthwhile? And how do your define a good and purposeful life? Is it the dream job? Finding the perfect partner to share the rest of your life with? Is self worth measured by our achievements and accomplishments? I hope not. Or is it simply the beauty of life itself? 

My own suffering has led a loved one to question what the point of life was when you could be struck down by illness or disaster at any moment. According to this loved one I have a degree that I may never use. I have work experience that I may never benefit from. So how now does he live his life? Should he bother with education and exams? Does he take each day at a time and count every blessing? Or does he throw caution to the wind and not even think about purpose and the meaning of life? 

Our purpose changes constantly, illhealth or otherwise. At one time you might define your purpose as being a student and getting good grades... I am still finding my new purpose. Maybe that's the point? Is one's purpose in life to find out what one's purpose is? Confused? Me too. 

Maybe I don't need to seek out answers. Afterall I am, and have always been, a sister and a daughter and a cousin and a friend. Is family therefore my reason; my purpose?