Tuesday, 28 January 2014

Lipstick Tuesdays

Let's face it. Life will chronic illness can be rather dull. And monotonous. And boring. There is often not a lot to look forward to. And when we do have something to look forward to, there is every chance that things won't quite go to plan because of our health. The most excitement most of us get is when we are able to get dressed by ourselves or brush our own hair.

Every day is much the same for my friend Cara and I. Neither of us get out much and, if and when we do, we suffer terribly for it. We 'met' on Foggy Friends a while back and now I count her as one of my favourite people. We text each other daily and her messages chivy me along on even the darkest of days. Everybody needs a Cara!

So every day for us is much the same. That is, except Tuesdays.

I've never been a lipstick wearer but I bought some lipstick in the January sales on a whim. Then, so did Cara. As both of us are (mostly) housebound and very often bedbound, we couldn't help but wonder when we'd actually get a chance to wear it though. Cue Lipstick Tuesdays! The decision was made to spice our lives up a little bit. Why save things for best or for The Real World? So whether it's a vertically challenged day in bed or one of those rare trips out of the house, we will slap on the lippy and look absolutely fabulous by doing so! Today is a bed day for me, but goodness me do I look dashing in my No7 Classic Rose lippy!!!

If, like us, you need a change from the monotony of chronic illness join us every Tuesday in brightening up even the dullest of days. Who cares if you're male or female, sloth-like or spritely?! Chances are nobody will see you anyway! Haha! Use the hashtag #lipsticktuesday so we can have a nosey at you and your fabulousness.

Happy Lipstick Tuesday lovelies!

Lipstick Tuesday! (This photo is from last week. You most definitely cannot see today's!!!) 


Sunday, 26 January 2014

The Adventures of Anna Jones - The Sainsbury's Experiment

I need a boost. Do you need a boost? If so this might help. Re-reading it helped me a bit.

This was written towards the end of 2013. 




It was a bit like those nights at uni when you went out despite having an unfinished essay due in the next day. You really, REALLY should have stayed in and been sensible but you never, ever did. (I still got my degree in spite of it so don't judge me!) 

So it had been a night of disturbed sleep and an afternoon of nerves before a Doctors appointment, said Doctors appointment, followed by a blood test (where my body, and those of my siblings, like to go into shock and faint and stuff) and then I ate dinner at the table... That is an unusually busy day for me. Very busy infact! 

Next thing Not-so-big Sis popped round and it was the kind of situation where only chocolate is the answer. But, strangely for us Joneses, we didn't have any. It was Do or Die. I stepped up! I had been planning to go for a little drive round the block anyway so why not go all out and see if I could manage to drive somewhere and buy chocolate? Test the water, you know? Throw myself in at the deep after having apparently plateaued yet again...

I was still 'alert' and wired after having been out and the crash that may or may not follow hadn't yet hit me and I didn't think it would until the next day. The adrenaline was pumping too much because I felt so happy and relieved after my GP appointment. (It's those wired feelings that can lead us sufferers to overdo it so I'm thankful and lucky to have others around me to keep me in check and not let me get too carried away.)

It was the usual toss up between doing things when you can/spur of the moment or quitting while you're ahead. Boom and Bust maybe. Well this time I made the most of feeling more able. The drive the Sainsbury's is straightforward enough and I used to drive it a lot in my youth when, once upon a time, I had the pleasure of working at Argos, which is next door.

Pascal. My noble steed
So off I went, with my good friend Mr Walking Stick and my trusty Blue Badge (like Sara Whitestone of Sara Spins said once "[We're] only in it for the parking!") The agreement with my family was that I do my usual drive on the Sainsbury's route and, if I felt able to I could, I could shuffle in, find the chocolate aisle (easy peasy for chocoholics like me) and then use the self service checkout and drive home again.

What a wonderful day it was!!! I cannot tell you! First a sympathetic and helpful GP, then a lovely nurse who stopped me from fainting and then I went to Sainbury's ON MY OWN. Solo. And it wasn't as if someone was waiting for me in the car park. I had to drive home too. Of course help and a lift were only a phonecall away but I was independent and that has only happened a handful of times (I've told you about each one.) 

(Blurry) proof
The Sainsbury's Experiment was a success! A one off for now but a success nonetheless.

Sainsbury's selfie! Weird anti-red eye eyes. Hat hair. Cheesy grin. Pink jumper so people know I'm a girl...
Boy did I suffer for it a couple of days after, but despite feeling horrendously poorly it didn't have to be a Bed Day and if that isn't a good and encouraging sign then I don't know what is. Regardless of how horrific I feel, and by Jove do I feel horrendous, those are the types of silver linings that I have to cling on to. 

Edit - Found this in my Activity Diary over a week after my adventure >>> "I definitely don't like Sainsbury's anymore." Hahaha! 

Tuesday, 21 January 2014

Unworthy

I'm sorry it's a longer post than I'd usually share but stay with me on this one.

So you'll know by now that M.E. impacts every area of my life. It's just a spoilt brat like that. You'll probably also know that it impacts my entire body. I thought I'd got my head around this until a new 'symptom' took me by surprise. Last year I noticed that it took me an unusually long time to form scabs after I'd cut myself shaving or whatever. I'm talking days. I ignored it and slapped the plasters on and it wasn't until I mentioned it to my nutritionist friend that I went to see my GP. 

For months I didn't bother going because I was convinced nothing could be done...

I wish I'd been proved wrong this time. I can't tell you how disappointed I was. Yes. Disappointed. 

My newish GP gave me hope by referring me to a haematologist. Afterall, it isn't normal to bleed like I was. This GP even retested my blood when the first results came back clear. She believed me when I said I couldn't stop bleeding. Ironically, when they took my blood each time, they struggled to get my arm to stop bleeding. Those second results, taken on a poorlier day, came back dramatically low in Factor 8. I was told by the haematologist that I was being tested for von Willebrand Disease but as there was no family history of blood disorders there was a small possibility that I had 'acquired von Willebrand disease'.

The haematologist took yet more blood samples. Those came back 'healthy'. I was discharged and told I didn't have von Willebrand; that a blood disorder was something I didn't need to worry about. 

I feel like that one abnormal result had been ignored. It's like failing a test. I only got 1 out of 3 'correct' and so I didn't make it through to the next round; to find out what's really going on with my blood. I should have asked more questions perhaps; refused to leave until I felt reassured, but I wasn't feeling well and Mr Brain was too preoccupied with putting one foot in front of the other...

My point is this. Results come back clear so often with M.E. You feel like you're on deaths door and yet the blood results don't reflect that. And rather than investigate further they discharge you because there is nothing definitive that can be treated. You don't quite fit the bill. I feel let down. I love the NHS, don't get me wrong. The haematologist was right up there with the greats and I suppose she's done her job in finding out whether I have von Willebrand or not. There's nothing more she can do. So who will help us? I feel sad that nobody feels the need to investigate further. So I don't have von Willebrand but clearly something is wrong...

Each time, you come away from an appointment with more questions than answers. That chips away at your ability to keep fighting; to not just give up and surrender to a life of THIS. 
There is only so much a person can take. And for a fleeting moment I wonder whether I should just surrender to sleeping all day every day and not bothering with. What's the point?

Recovery from illness should be a group effort, not an individual one. When I said I wanted to be independent this isn't quite what I had in mind. There should be doctors and support teams. I sometimes mention the CFS clinic but I am not officially on their books anymore. They keep you for six months and I just happened to be re-referred during a setback by a doctor who didn't understand about M.E. 

I burst I to tears as soon as I got back to the car. I felt bruised with disappointment. I admit I wanted a name or diagnosis for what's been going on so I could say "look what M.E. has done to me," and it would maybe help persuade people that this is physical, so much so that it's ruined my blood. 

For a fleeting moment you wonder if you've gone mad and you dreamt up all these symptoms. How
can the results possibly be clear? You should have seen the list of tests my GP sent me for when I first mentioned this blood thing. LOTS. 

I do not have the energy, and I think I am running out of fight, to pursue every frightening symptom that rears its head. I just want someone to take me seriously and not pass me from pillar to post because I don't come under their jurisdiction.
From Twitter

Thursday, 16 January 2014

Karina Hansen

The following post has been taken from the Justice for Karina Hansen Facebook page. I have permission to share it and have been asked to do so. 

More information can be found at Justice for Karina Hansen where there is information and a template on how to contact Amnesty International.

***** KARINA'S CURRENT CONDITION *****

When Per attempted to visit Karina, he spoke with the nurses and he was told that Karina doesn't talk but only occasionally is able to mutter one-syllable words. She could talk at home before the incarceration and sometimes in several sentences at once.

If she sometimes felt too weak to speak, she was still able to make herself understood.

We know that shortly after the incarceration, she was able to say she didn’t want to be at Hammel, that she wanted to go home and that" they were killing her".

She has been held at the center for 11 months. In that time she can still not walk, she has gone from being able to mutter a few words (like "you are killing me / I slår ihjel mig"), to not speaking but would occasionally utter one-syllable words.

After reading the article about the young lady in England who has ME (Jessica Taylor from The World of One Room), the family does not have any doubts Karina's condition has deteriorated after the incarceration. This is to the point that she does not recognize her own family. 

In the two times her sister Janni had visited Karina, there was no recognition in Karina's eyes. Janni found this shocking and sad.

Karina has had some visits from an extended family member, whom she did not see at all when she was sick for so long at home. These visitations have occurred on the request of Nils Balle Christensen, without asking Karina.

Karina may not have been able to speak during these visits.

The book "Severe ME" by Greg Crowhurst, describes the symptoms of severe ME:

‘To not understand, not be able to explain, not be able to formulate words, not be able to perceive, not be able to express yourself, speak, describe in full, identify the fears of the reality you're in, in the shaky, noise reality in your central nervous system, which is the cause of the extremely destructive chaos in your head and body’

This is exactly how we imagine it is for Karina.

Merete Stubkjær revealed on the meeting of 27th August, that they do not know if Karina is thinking thoughts - common thoughts. At home, Karina was thinking normally and was also able to express her thoughts.

So has she deteriorated to the point where she can’t make sense of anything that anyone is saying to her?

To the point that she doesn’t understand questions and can’t recognize faces?

Is her automatic response ‘no’ because that is all she can utter?

Or is it because she knows that a "no" could be a chance to escape one of the many daily demands put upon her, that pushes her way over ME limits and exacerbates her symptoms even more?

All involved members of the staff are listening to what Nils Balle Christensen, Per Fink and the team think, believe and want to try out. They believe Karina can persuade herself to get better. If this was the case then she would have been out of the clinic months ago, to be home with her loving family.

Karina's family and supporters are not giving up the fight to get Karina back to where she belongs!


Sunday, 5 January 2014

Every cloud...

...really does have a silver lining. See! 


I try very hard to seek out the silver linings in every situation. 

Last year I tried to find something that could hang in my bedroom that would symbolise this. My search was unsuccessful. Nobody was making what I had in mind, so I decided to make it myself! You can buy clouds with raindrops coming out of them, you can buy clouds with smiley faces and clouds in pretty colours but I couldn't find any clouds with a sparkly sliver lining. 


I've tried my hand at sewing whilst poorly already in my One Stitch at a Time post.

It has taken over six months from start to finish but I think I am finally done. I did each one by hand and (very) slowly they turned into cute this little bunting that will remind me that every cloud has a silver lining. I just need to find somewhere to hang it. 


And one more hanging on my door, 

so even when I have to shuffle back up to bed on poorlier days I have a silver lining waiting for me. 



Saturday, 4 January 2014

Three Good Things

Hands up who thinks chronic illness is pants? Who's too exhausted or in too much pain to raise their hand??? 

I have come to believe that when you lose your health, you lose a sense of your identity with it. Gone is You; the person you had been your entire life. It's hard to explain, hence it is difficult to understand, and if you haven't experienced it I imagine it's very hard to get your head around. I am almost bombarded with "But you're still the same Anna to us" comments. Perhaps so. But to me, I am different now and the image I had of myself has been eradicated by ill health. 

Some of us are getting to the point where we have been ill for as long as we haven't. It hit me the other day that my university friends will soon have known me longer as an ill person than as a healthy one. 

This does not make for happy sufferers of chronic illness. 

The frustration and despair and injustice can eat away at you so I'm trying to do something about it. 

Three Good Things 

It's gone past the stage of needing detailed symptom or activity diaries. In truth it was demoralising having to use up my precious energy writing down whether a certain food triggered stomach pain or at what time the post exertional malaise hit or what it could have been that was the catalyst to sensory overload... (I do still record some things, just not in as much detail.)

Instead I now write only three sentences or bullet points per day. My three good things. I've seen quite a few of my twitter crew doing the same. 

So I thought I'd go back over the last couple of months and share a few with you. They might seem silly or too simple to you but to me they have become the greatest of achievements and the simplest of things can help raise a smile even on those bedbound days. I think you'll agree that they're worthy of exclamation marks!!!

  • Ironed my own top! 
  • Poached an egg!
  • Going for coffee with a friend & not needing to put my feet up on her chair!
  • Someone changed my bed for me
  • Visit from my grandparents & being able to make them a cup of tea!
  • Wrapped a friend's birthday present by myself!
  • Made a phone call!!!!!
  • Shrek
  • A Hat Day but my first in quite a while (I wear a hat when my head hurts/feels 'funny')
  • "Today is brighter than yesterday" 
  • Managed a shower!
  • Used a knife and fork!
  • Walking to the front gate!!! (~3 metres)
  • Only having to be in bed for half the day!
  • Mum
  • A letter from a friend arriving in the post
The same can be done with what we'll call a Jar of Happiness. Everyday the highlight of the day is writing down and popped into a jar. After a year there will be 365 highlights and rereading them all will no doubt count as a highlight too.