Saturday, 28 December 2013

Yearly roundup - Goodbye 2013

Merry Christmas and Happy New Year you lovely lot! 

I'm hearing stories through the grapevine about those of you who knew me before The M.E. Years shedding more than a few tears when reading my blog. Cheer up chucks! This blog post will hopefully show you how, in amongst the bad, there is good. It's just harder to see sometimes. 

I like that this time of year allows me to measure my progress. Progress can't be seen month to month just yet. But it can be seen yearly. 

For the second year in a row I was able to drive the 300 or so yards to the nearest postbox and post my own Christmas cards (which were written over a couple of weeks.) Next year I hope to walk it. That's the plan anyway. 

Each year we tend to have the same plans; Christmas Day it's just us six for dinner, with drinks in the morning with family friends, Boxing Day is spent with extended family, and then it's my cousin's birthday celebrations towards the end of the month. 

Two years ago I made it to the Christmas morning drinks. I managed to sit and chat for almost an hour. Last year I didn't make it, but this year not only did I make it but I managed to STAND and chat instead of sitting. 

Last year on Boxing Day I had to get back into my pyjamas half way through the day and couldn't join in with the games because unwrapping presents is apparently as exhausting as taking part in a triathlon! This year not only did I manage to sit and join in with a game of rapidough but I was pretty amazing at it too! And almost energetic in my celebrations. 

I was pretty good at Rapidough. The rest of my team weren't so great.

I can't remember what the payback was like after the Christmas period last year but payback in general seems much less severe, touch wood. There are less bed days, less hat days (I tend to wear a hat when my head feels bruised or sore or if my brain feels 'itchy'), less ear defender days...

If I had to pick one highlight of 2013 it is managing to eat my dinner at the table that spring to mind, silly as it may sound. Most days I am now able to eat at the table!

So 2013 has been another year of blood, sweat and tears, and of perseverance. But Christmas time has shown me that it is all paying off. If I look hard enough, I can see progress. 

I am getting better. 

And I am proud of myself. I don't care if that makes me sound arrogant. I seem to have an indomitable will and unconquerable soul and I'm stronger than I ever realised. I seem to have developed a superhuman ability to pick myself up, dust myself off and just keep going. Bouncebackability I like to call it. 

Cheers to recovery! I went all out and had coca cola for Christmas. Look how happy I was about it. Crazy daisy! 

M.E. myself and I will carry on into the New Year and continue to try to help you to help me. 

May 2014 bring us all the grit and determination needed to keep plodding along and may there be much to smile about.


Sunday, 15 December 2013

Giving positivity the day off

Today is 'good day' because I'm well enough to get dressed. How boring has my life become?! And when I say dressed I mean I've swapped my pyjamas for a pair of leggings and a long baggy top. There's been no make up applied or hair styled. That's too ambitious. There's no jewellery beyond a pair of Christmas tree stud earrings that I've put in to try to lift my spirits. As always I've got jazzy socks on to try to do the same. 


Being mostly housebound is pants. And if that wasn't bad enough I can't even have visitors often because with M.E. that's 'too much' too. Playing host is exhausting. My siblings are off out living their lives and I don't think they should have to sacrifice their plans just to keep me company, especially when communication is often beyond me anyway. 


This will be my fourth poorly Christmas. There will be no nights out. No work Christmas do. No New Years Eve parties. I won't be able to join in with family games. 


This is not the life I'd have chosen for myself. I am 25 years old and instead of enjoying my twenties I am merely trying to survive them. I have not made use of my degree. I have not got a career. I have not moved out of home. 


And none of this was my choice. All of it is a result of chronic illness. This is not the person I am or want to be; this poorly young woman. I'm looking through old photos today and the blonde haired little girl with long dark eyelashes has grown up to be THIS. This young woman with a broken body, and as a result a broken heart. 


I watch the same films over and over because my heart can't cope with surprises. I eat the same foods because my stomach has become even fussier than it was before. The most exotic drink I can manage is orange squash. 


Yes there are silver linings. Yes there are positives. Yes there are good things. Yes I'm better than I was. But just for today I chose not to see them. Let me have my Pity Party today. I think it's the least I deserve. 

In recovery. Still!

On 26th November 2012 I became 'officially' classed as in recovery by the CFS/ME clinic.

I've been 'recovering' for a year. Pfft. (See my post from November 2012 here.)

It has become clear that recovery with this condition is more a state of mind than anything else. I was always aware that this state of 'recovery' could last years and perhaps the rest of my life, but until recently I didn't want to have to believe that it's true. Don't insult my intelligence and tell me that I will get better. You don't know that. Your hope and belief is lovely but it's also unrealistic. I'm not asking you to be a pessimist, just to simply accept my illness for what it is; chronic. Yes some do recover but the majority don't and I'm sorry if the truth bursts your fairy tale bubble. Aren't I am misery these days? 

I'm officially no longer classed as 'severe' but is that just so they can tick me off their list? Yes I am certainly better than I was in The Beginning and I no longer reside in our dining room but after filling in my latest ESA50 I am reminded just how poorly I really am. 

These benefits form not short and sweet and in three years I have not been well enough to fill in any of these forms myself. I find them soul destroying and demoralising.

"Can you do this..." No. "Can you do that..." No

I am completely dependent. My mum writes and fills them in for me but just answering some of the questions or elaborating on certain points in completely exhausting and I really mean that. 

The people who slate those dependent on sickness benefit and think we are milking the system have clearly had no experience of filling in these wretched forms themselves. And then there's the medical assessment...

And while I know we cannot expect the welfare state to simply hand us financial support, the system seems to purposely work against us so as to deny us the support we need to simply survive. 

I cannot afford to move out and live independently, nor can I save up my benefit payments to get a bit of money behind me. That's not allowed and having a certain amount of savings means you are not eligible to claim. 

We are branded and slated for applying for and asking for support. I was only 21 when I became ill but I had worked every school holiday, every weekend, some evenings after school, some mornings before university...I paid my way. I was not a shirker. It is a huge knock on one's self esteem to suddenly have to rely completely on other people both financially and otherwise. It is laughable that the people at The Top are so far removed from the Real World that they simply have no idea what we, the masses, go through. Being poor isn't a choice. Being sick isn't a choice. And if it was, who would choose it? 

When I graduated, probably one of the happiest days of my life, who would have ever imagined that the next bit of 'writing' I'd be doing was filling in the first benefit form? That's not what graduates are meant to be doing. That's not what I spent three years and twenty thousand pounds for. 

I know and certainly hope that I am on the road to recovery but it's a longer journey than I would've liked. Every single day I work hard to stick to the rehabilitation programme that the CFS/ME clinic gave me way back when. The last time I allowed myself to sleep in the day was in December 2010. That's some seriously hardcore willpower my friends! (That's not to say that other sufferers shouldn't sleep in the day. Each of our cases is as unique as we are.) So often it would be easier to just sleep; to shut out the symptoms and let the fatigue win. I am often able to fall asleep and sleep thought the night now and all thanks to gently coaxing my brain into remembering that day time is awake time and night time is sleep time. Three years in and it's still not great but it's much better than it was and it's good to see that some of the rehab programme is working. 

I must cling to such silver linings. Like the fact that my family will look after and keep a roof over my head. And my friends try to understand as best they can. And people still include and invite me to join in. 

People struggle with the concept of getting better. There is confusion from others when I am stuck in bed because they thought I said I was getting better? M.E. is far less black and white than that I'm afraid. It seems I'm heading in the right direction though, very slowly but surely.

Sunday, 8 December 2013

The Adventures of Anna Jones - A Day Out!

Before now I've spent the day at Woburn Safari Park, been to Burghley Park (just around the corner) for a day of cricket watching and probably had other days out that I can't remember off the top of my head.  I have once before made the trip back to Norwich, where I went to university. That was in The Beginning and was a struggle to say the least. 

Norwich. February 2011.
Yesterday's trip to Norwich has highlighted how incredibly far I've come since that first day out with my friends. For one, there was no wheelchair! If the tyres hadn't been flat (*rolls eyes*) I would have taken it and the payback would have been lessened considerably. But still, no wheelchair and I still managed it! Three cheers for my legs! For those of you who know the city, we parked on Bethel Street, cut behind the police station and walked to Lower Gate Lane for lunch. 

Day Out Survival Guide:
  • Snacks - Vital as a lack of sugar or food does not help any dips in energy levels.
  • Drinks in both bottle and carton form as I am sometimes too weak/unwell to pierce the top with a straw/unscrew a bottle top. Having options gives me more chance of succeeding!
  • Hat
  • Scarf
  • Gloves and mittens to go over the top! (My heart seems to think it doesn't need to pump blood as far as my extremities. Silly heart.)
  • Blanket? For my legs if I'm being wheeled around. 
  • Ear plugs/defenders so my friend can listen to music in the car if she wants to. I can't seem to cope with having music on and coping with the constant moving scenery when travelling. 
  • Medical ID bracelet incase I get lost ;-) 
  • Blue Badge for superior parking spaces and those wider bays that are a godsend for those like me. 
  • Painkillers
  • Rescue Remedy
  • Relaxation exercises/apps - Quick Tip! Do them when you nip to the loo if you have to! Grab any free minute, ie. while your friend puts something in the boot while you wait in the car

All this can make for a very heavy handbag! If I have the wheelchair it doesn't matter. My siblings have learnt that I'll shuffle a bit faster if I don't have anything to carry. This pleases them as they don't have to hang around waiting for me to catch up all the time. Hence why they now tend to carry my bag/s for me!

Now I'm sorry if this is gross but I am having a huge problem at the moment with...sweating. My clothes get wet! Seriously. I can't put my finger on what the trigger might be: the material my clothes are made of, feeling anxious or nervous, deodorant...

So anyway. It means I have to be even more careful when deciding what to wear. Layers have been key. If I get too hot, which can happen in a matter of second, it can be a bit of disaster. If I get too cold it will stay with me all day and into the night, making sleep even harder than usual. So layers! And now I have to be careful to pick colours of patterns that might disguise any...sweat patches. Eww. Sorry! 

In the past my friends have swapped numbers with my mum so that they can get in touch with each other if needed. My friends wouldn't necessarily know what to do if I suddenly crashed and if I suddenly lost the ability to speak while crashing, then they would at least be able to call for help or advice. My friends are lovely but they don't see the ins and outs and the harsh reality or this illness like my family do. 

Days Out are trickier than visiting friends' houses because there is no 'base camp' if you like. Days out that involve travelling longer than 15/20 minutes are a huge undertaking. You'll probably know by now that there is always payback to some degree. Today and tomorrow will be a huge juxtaposition to yesterday. It isn't fair but life isn't fair. Truly accepting my new life means accepting all parts of it, payback included. It is hard to do that but I am trying. I try to concentrate on the event that led to the payback and 9 times out of 10 I'm reminded that the suffering was worth it! 

If laughter is the best medicine, yesterday has probably cured me! 

And a lot comes down to having the confidence and conviction to speak up. Luckily I've always been stubborn so if I'm confident even to say that a certain destination is too far for me to reach, it's unlikely whoever I'm with will persuade me otherwise. What's frustrating when this happens is that some people brush it off as me being pessimistic about my own abilities. "How will you know until you try?!" Believe it or not, three years of this illness has taught me more about my own limitations than it has you! With some people it becomes easier to keep quiet and struggle on but the consequences have taught me/are teaching me that it's rarely worth it just to keep others happy. 

This day out has shown me that I am in a much better place than I once was. It's given me hope that I'll be well enough to have more days out. I'm thinking once every six months? And then maybe once every three months. Then every other month... Until eventually, one day, I can do it without the planning and the worry that my body won't be strong enough. One day I want to go for days out EVERYDAY! Or at least have the option to. That's the dream. 

Monday, 2 December 2013

Pyjama Party Photo Diary

Ready and 'raring' to go. I would have loved to decorate the house more and make more of the Slumber Party theme but when you're poorly you have to sometimes (or always) forget about the extras and focus on what's most important. It was more important that I was well enough to attend my own party!



One of my old housemates and Beech House buddies, probably my oldest friend & me. Together we made quite an impressive team! (I'm usually not up to actually taking part in our Games Nights & have to spectate, so it was wonderful to manage it this time.)



The M.E. Years would have been much darker & bleaker without my girls. Despite everything, I am still just 'Jones' to them & that means the world to me & my family. They actually like taking me out because they get better parking spaces and can hang their bags on the back of my wheelchair! Unconditional love hey?! 

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? 

Wednesday, 16 October 2013

My 1st Blogiversary!

M.E. myself and I is a year old! Happy Birthday Blog! 

For someone who doesn't do very much I seem to have an awful lot to say seeing as we've managed 12 months and over 140 posts.


I often forget that I am so much more than just an M.E sufferer but you have all reminded me that I am indeed something more. If nothing else I am a blogger. It is an achievement in itself to have been writing posts over this last year.

If I didn't have M.E. I'm really not sure I'd read a blog like mine so a special thank you to all those who don't have experience of M.E. and yet still take the time to read and hopefully try to gain some understanding. Thank you to those who use up their very precious 'spoons' to read and comment and share each post I publish. Thank you to the parents and siblings and friends of other sufferers who have joined me along the way. Thank you to my own family and friends who have stuck with it this past year. I hope it hasn't been a waste of your time and I hope M.E. myself and I has helped in some way, however small.

Changes in appearance since October 2012. Blue seems best, for obvious reasons. (ME/CFS awareness.)
The majority of people who I started this for no longer read my blog; some found it just too upsetting to think of their Anna like this. It was never my aim to upset anyone or make anyone feel sorry or sad for me. I was always just trying to help; to give an honest insight and to try to explain. That's still my main aim but I also still find it beneficial to get things off my chest. Looking back at the posts also allows me to 'measure' my progress. 

Blog-wise I suppose I'm up against it, what with beauty and lifestyle blogs being the blogs of choice. Everyone seems to have a blog these days and many bloggers are after fame and followers but that's not why I started a blog. I should have picked a much chirpier subject if that was my goal! 

Yet despite not being a 'mainstream' topic, we have reached well over 20,000 views. That is ridiculous for a blog about M.E! Posts are shared on Facebook and twitter by people I have never met and have never spoken to. Obviously not everyone who views the blog page will read each post all the way through, but M.E. myself and I has a worldwide audience and I can't quite believe it! That was something I had never even thought about! This was honestly just meant to help my nearest and dearest to understand and it has become something much bigger. I never imagined that it would be so well received and read by so many. Thank you all for being so nice!

Top Ten audience by country for this week
I would love to know who my readers are, so if you would like to make yourself known please say hello in the comments section below. 

So I will carry on with M.E. myself and I because there is still, somehow, much to say. 

And now, instead of celebrating I am off to the doctors this afternoon with a list of lovely new symptoms as long as my arm. Yay. 

Left: the original blog photo. Right: a year on and I'm still under the same blanket, in the same hoody, wearing the same hat

Wednesday, 9 October 2013

I'm not okay

This one feels very personal but I am still going to post it because I know it will strike a chord with many others. I mean no harm in publishing it. It is nobody's fault, just another observation about life with chronic illness.

I saw some friends recently and, as has happened before, I was left with that bittersweet feeling afterwards; hearing about the ins and outs of The Real World. My life has changed so much. To them it was just a couple of hours in a busy week. For me, it was my whole week. 

This time that bittersweet feeling, and the over analysis of how I might have come across, was worse because I know what they thought. They told me. They thought I was crazy and weird. They said it affectionately but I know there was truth in it too. They said it was a side to me that they hadn't seen before. I was just trying to be myself and I was perhaps more honest and open than I have been before. 

I think I was overexcited and overtired. I was scatty. I came across as drunk apparently. I feel so foolish and embarrassed. Mortified even. And I feel pathetic; that my life has been reduced to this. I felt I was just being myself but it's not a person they recognised. Am I starting to lose my marbles after years of being cooped up? They must wonder whether I have a dual personality, but it's the impact M.E. has had on my ability to be myself and to be 'normal'.

And my dad seemed just as excited too; that I had visitors. And they might have thought his excitement was odd too; that a grown man seemed so happy that his adult daughter had friends round for a couple of hours. 

It was probably the best and liveliest they've seen me in years which is, of course, great! But it comes with me now having to learn who this Anna is: in this next phase of my M.E. journey and I don't think you can fully understand the idea of that unless you've been there yourself. I have been shoved out of my comfort zone by the most recent steps along the road to recovery. I am yet to find a new routine that I'm comfortable with, what with my parents being away and my brother having moved home after university.

And the constant analysis is getting to me. "Is it a good day?" "You seem to be able to do more recently?" I feel so lost. I don't know who I am. I have to find my feet, and my balance, all over again. How I hate M.E. and chronic illness and all that comes with it. I can't do this anymore! I just want to scream. I think it has finally hit me that I've had my 3 year anniversary and I'm heading towards my fourth birthday as a poorly person. I feel very low. I am struggling in general at the moment. There, I said it. 

I don't know how to 'be' around people anymore. What is the etiquette? What are the rules? I feel so out of touch with The Real World. I feel very much like I no longer belong; I feel so far removed from those who were once my peers.

I'm not okay, but that's okay. Maybe I will be tomorrow. 

Tuesday, 8 October 2013

Personality

A few months ago I was out with my family and our oldest family friends. I barely muttered a word all evening and had to leave early. I didn't talk to my friends, one of whom had just graduated. I didn't/couldn't even say congratulations. It got me to thinking...

Chronic illness has altered my personality in that I am too exhausted to be the person I really am. I've become a diluted version of myself, all thanks to this illness. I am too physically unwell to function as my true self. (It seems some people struggle to get their head around that and they disregard my explanations with a simple "M.E. really must be a mental and psychological illness." Now there is nothing wrong with having such an illness, but M.E. is NOT one and you'll make me cross if you say it is.)

People comment that they see "the spark" coming back as the months and years progress which is encouraging and lovely to hear, but it's also a bit sad that I can't see that 'spark' myself and feel so far from the person they still see me as. 

Many people say I'm just the same old Anna, infact I think everyone says that. I find that baffling! I don't see how I can be, when so much has changed and I've changed with it. Maybe for the couple of hours a month that they see me I give it everything I've got, because I'm so excited to be socialising, and so the person they see is infact almost that Old Anna.

That's invisible illness for you. My outer shell looks much the same (minus the oddly coloured hair, weight gain, pale skin, boy haircut, etc) but the person inside feels such a huge juxtaposition to what people are (apparently) seeing. 

I feel I'm not as chatty or 'bubbly' and I can't keep in touch with my friends or reply to messages like I used to. My responses are often short and without humour too, because I can't seem to form the same sort of sentences as I once would have. I am not always able to offer fellow sufferers support and friendship when, at one time, I would have done. And yet I couldn't survive without their support. It feels very selfish, which I don't think is very 'me'.

Other aspects of my personality have been highlighted because of my being ill. I am much too empathetic, so much so that I am unable to read the news without getting upset about what I'm reading. Some parts of me have perhaps remained exactly the same. I still love to photograph everything and anything, much to the dismay of my siblings. When it comes to diets I am still lacking the willpower to see them through until the end. I still choose to dress in clothes that some others find...unusual. 

In some ways I have become much more laid back. In other ways I still worry just as much as I always did, maybe even more. I'm less grumpy and argumentative but the 'feisty' and opinionated side of me is starting to pop up here and there according to The Family. Feisty? Me? Pfft.

So you see M.E. really does have an impact on absolutely everything. 



How will I know when I'm back to being 'myself' if I can't remember who or what that person was? Maybe I will never be the same again after having endured such a harsh life changing experience. Maybe that's for the best. Who knows. There are parts of the new me that I hope stay with me forever, just as there are parts of the Old Anna that I hope aren't lost forever. One thing is for sure, I still seem to overanalyse things just as much as I ever did. 

Saturday, 28 September 2013

Record breaker

Ladies and gentlemen, momentous things have happened this week. 

There have been:-

  • four days of driving (not driving solidly for four days, you understand.)
  • a whole week and a half of managing to shower every evening
  • nearly a week of getting dressed out of my pyjamas every day

But what I really wanted to tell you is...

Drum roll please...

I have been eating my dinner AT THE TABLE and WITH A KNIFE AND FORK! 
Ta da! *Curtseys graciously* 

Were you expecting something a little more exciting? Ha! Welcome to our world my friend. 

Sitting at the table to eat has become a huge achievement. It is so much harder than you'd think. For one, I'm not able to put my feet up so I can suddenly become lightheaded or dizzy because my blood has decided it doesn't want to flow properly anymore. It's hotter in the kitchen and I already get hot enough after I've eaten, for some reason. It's also noisier, especially with a family of (sometimes) six, so there's the chat and the clatter of plates and the banging of cupboard drawers to get more cutlery...

At mealtimes I mostly sit on the sofa with my feet up and somebody brings me my meal on a tray, like the Queen of Sheba. I have my food cut up for me, even my lovely friends have done this for me if we're out for a meal, and I usually eat out of a bowl using a spoon because it is somehow easier and less messy! 

Eating itself can be exhausting so it has been an absolute godsend to have my family around and willing to adapt mealtimes to meet my new, almost childlike, needs.

This week has been different though. I have eaten at the table for six evenings in a row! Six! Not only that but I used a knife and folk and on one occasion it had a plate instead of a bowl and cut up my own food. 

No biggie


I haven't managed to sit at the table more than once or twice a month so this is definitely a new record. 

Off I go to fill in a Guiness World Record application form! 

Tuesday, 24 September 2013

Hostility within the ranks

"They can't really have had M.E can they?!"


Who are we to judge? 


I have been met with disbelief at one time or another and yet here I am questioning, albeit silently, whether or not a person has really got M.E. When did it become an exclusive club or a competition? Surely I should save the energy I'm using wondering whether other people have a 'true' case of M.E/chronic fatigue syndrome and spend that energy doing something much more worthwhile. 


I can see why we do it though. First and foremost there is no definitive test to identify our illness and that alone leaves room for scepticism. Diagnosis is given through a process of eliminating other possible diseases. Despite our condition ultimately being "swelling of the brain and spinal cord" many of us go without an MRI scan and other tests results come back completely clear despite these disabling symptoms.    


Chronic fatigue is not the same as chronic fatigue SYNDROME. (And then there's the M.E. vs CFS/ME debate which I won't get involved in.) Are these 'fellow sufferers' giving us a bad name by branding themselves as M.E. sufferers when they are infact not in the same boat as us afterall? 


It is infuriating to hear people say that when they had M.E. they "had no choice but to go out to work and earn a living." With me there is no choice at all! I am simply too ill to function properly enough to leave the house once a week never mind everyday for week. The authorites could threaten me with allsorts and still I wouldn't be able to do it. I am too ill to push myself like that. It is insulting that people imply that a Mind Over Matter attitude will get me out of the house and to work. It is insulting when people imply that we're not trying hard enough to get better in the way that they did. Or that our attitude isn't positive enough. All this from apparent fellow sufferers? If they were truly in the same boat as us I feel they'd be a little less tactless and a little more sympathetic.


It was reported some years ago that Michael Crawford had/has M.E. I remember reading his story in the paper in the early days of being ill and reading in disbelief how he went fishing everyday and enjoyed a quiet, outdoorsy life abroad which lead to recovery. Fishing everyday? Everyday? But then I'm remembered that some sufferers are still able to work. It doesn't mean that they don't have this wretched illness. No two of us are affected exactly the same so why do we still compare and judge? When people sleep or nap during the day I commend myself for not doing that because I'm actively retraining my brain into remembering that sleep is only for nighttime. But if it's what they feel works for them, who am I to judge? I'm no expert or guru.  


There is a scale of M.E severity or ability; from 0% to fully recovered at 100%. I have moved up from 0-10% to 20-30%, although it's hard to gage with such a fluctuating condition. You never quite 'fit' anywhere.


And now Martine McCutcheon has spoken out about her own experience of this plague, and already some of us are forcing our views and opinions about her situation on anyone who will listen. 


When I hear stories of complete recovery I admit to being sceptical about how long that remission will last, or whether or that the person could have really had M.E. in the first place. Can you recover from something incurable? Surely it'll all come crashing down around them again one day? Maybe not tomorrow, maybe in ten years time but certainly one day. Would you turn against me if I recovered, and declare that I can't possibly have been that poorly if I eventually recovered?


It's unlikely that cancer patients are met with such disbelief from other patients so why do we M.E. sufferers do it? 


I'm getting fed up of people implying other sufferers are lucky because they aren't as severely affected as others. None of us are lucky. No one with a condition like this can be described as lucky. Not when it comes to outer health anyway. Don't make another sufferer feel bad because their suffering is different to yours. Don't tell someone else how they should be feeling fortunate. "At least you can do x, y or z..." is something I'm seeing more and more. I know full well what I'm able to do and that I'm fortunate to be able to do it. I don't need it to be pointed out to me. But thanks anyway. Don't rain on my parade. Come and dance in the rain with me.



At the end of the day. who are we to judge?


Wednesday, 18 September 2013

(Not) So Straightforward

(There have been posts like this one already but some of you joined us along the way so may have missed them.)

Sometimes, not often, but sometimes I can make myself something for lunch. Now when I say make I mean a piece of toast with jam, or a boiled egg (not with toast. That would be too hard.) The other week it was fish fingers. 


Let me break it down for you:-
  • Walk to the freezer. 
  • Pull open the door. 
  • Bend down to get the fish fingers. 
  • Stand up.
  • Close the freezer door.
  • Put the fish fingers down on the kitchen table.
  • Walk to the cupboard.
  • Open the door.
  • Pull out a baking tray.
  • Close the cupboard door.
  • Walk to the kitchen table.
  • Put the baking tray down.
  • Walk to the drawer.
  • Open the drawer.
  • Pick up the baking parchment.
  • Close the drawer.
  • Pull on the roll of parchment.
  • Rip off enough to cover the baking tray.
  • Place the parchment on the tray.
  • Open the packet of fish fingers.
  • Place them on the tray.
  • Close the packet of fish fingers.
  • Walk to the freezer.
  • Pull open the door.
  • Bend down to put the fish fingers away.
  • Stand up.
  • Close the freezer door.
  • Walk to the oven.
  • Turn the oven on.
  • Bend down to pull the oven door open.
  • Stand up. 
  • Walk to the kitchen table.
  • Pick up the tray of fish fingers.
  • Walk back to the oven.
  • Bend down.
  • Extend arm to put fish fingers in the oven.
  • Close the oven door.
  • Stand up. 

While the fish fingers cook I am unable to relax properly because I am conscious that I could forget that there is something in the oven. I usually use a timer to remind me. I sit back down in a comfy chair, which means walking down the hall to the sitting room. I also always put my feet up because I've just had to stand for 'a while'. 

When the cooking time is up...
  • Walk to the kitchen.
  • Pick up the oven gloves and put them on! (Mr Brain likes to forget this one...) 
  • Walk to the oven.
  • Turn the oven off.
  • Bend down.
  • Pull open the oven door.
  • Take the fish fingers out of the oven.
  • Stand up.
  • Put the fish fingers down on top of the oven.
  • Bend down.
  • Shut the oven door.
  • Stand up.
You get the idea. Then comes the getting a plate out of the cupboard bit, some cutlery, the ketchup...

If I 'make' my own lunch it takes me longer to eat it. I feel the effects of having simply put some fish fingers in the oven, maybe for the rest of the day. (it used to be for longer.) Although I have not used it, the fatigue has travelled as far as my jaw and so chewing is an effort, as is cutting up the food and then moving it up to my mouth...Such exertion is viewed as exercise by my body and it reacts as if I have just taken part in a triathlon!  

Like always though, it's not sympathy I'm after. I personally think it's amazing how I manage to cook myself something as ambitious as fish fingers! I couldn't have done it in The Beginning and one day I hope I'll be able to do it everyday or even make a proper meal with more than one item to it! 

Is it worth it?

Yes. It's all a part of the bigger rehabilitation picture and the sense of achievement is savoured until the next 'adventure'. As the months and years pass it's becoming perhaps easier to do such a task. My body has been coaxed, incredibly slowly (over three years), into being able to do things like this. They're not yet second nature and I don't manage to do them nearly as often as I'd like, but one day it might not be necessary for such a task to be a whole list of little tasks. One day it might just be classed as one straightforward task; cooking some fish fingers for lunch.