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?!