Sunday, 28 December 2014

Health doesn't equal happiness

The highs and lows of 2014

Highs:-
  • Meeting a poorly pal.




Slanket capes and joint Purple Time! 




It was just the best! To have been chatting online and texting someone for so long and then finally there they are stood on your doorstep! And they understand absolutely!

It broke my heart a bit. To see her suffering and struggling. And knowing how it feels to feel like that. It was the strangest feeling. I said the things that I'd promised myself I never would - because I myself cannot answer them. Things like 'How are you?' 'Do you think it's making a difference?' 'I hope you're okay' And I don't know why I asked because of course she's not okay! She has severe M.E. I hoped so much that I didn't wear her out. But of course I must have! Just being out of her house and in mine would have done that. And it wasn't just a five minute journey she had to contend with. 

So now I know how you must feel - or at least how you felt in The Beginning. When you first met the new, poorly me. This is how you must feel when you see me or think of me and my health. Desolate. Unable to really help. 

But I can only do my best for her - offer her my friendship and my time and energy. And that's all I want from you - a weekly text message or a daily joke or a card in the post. That's all any of us can really do for our poorly pals. 

  • JustGiving Award nomination
  • Blue Sunday 
  • Old and new friendships in general - I was reunited with an old school friend this year and it felt like no time had passed whatsoever!
  • Countless lovely messages, tweets, and comments about my blog and my awareness efforts
  • Family


Practically-older bro, Not-so-big sis, me, and Not-so-little bro

  • Having the physical strength to allow my hair to grow and being able to wash and brush it myself


My locks are now so long and luscious that I can pin them up again!
  • Seeing things through their eyes - a couple of my old housemates noticed little things that I had missed. I didn't need to put my feet up on a chair while sitting in a coffee shop like I'd had to before! And I'm apparently much more expressive with my hands when I'm talking! My hands rarely lie limb in a claw-like position on my lap.
  • The online community - the ultimate high!

Lows:-
  • Allan 


We lost Our Allan suddenly and unexpectedly in August, just shy of his 60th birthday. I'm sure he would LOVE that we keep using his Princess photos when we talk about him!

  • Dining Room Days - life is full of surprises but I wasn't expecting this one so 'far' into my recovery journey. Curse those stairs!




So here's to a happy 2015 for us all. We may not get a healthy one but here's hoping it turns out to be at least a tiny bit healthier than this one.

Saturday, 13 December 2014

Foreign Territory

I feel like I'm doing a kind of social experiment now!


So I've been on an online dating site for a week now. 


If someone messages with 'Hi, how are you?' I'm not massively impressed. Whereas if it's clear from someone's message that they've read my profile I will always reply. I've been asked on five dates. I'm not keen on meeting a couple of them because they haven't made any effort to get me first and I don't have energy to waste here people. I've told one I can't possibly meet before Christmas. He says he'd like to wait. He thinks it's because Christmas is busy because of our family business. It's half true!


Out of the five men who've asked me out (how hilarious is that?!) I've only told two of them that I have Myalgic Encephalomyelitis. (I haven't uttered those two letter M and E on purpose.) One man dissected the words to work out what they meant. I mentioned mitochondrial failure and he instantly knew I must have a depleted energy supply. He's asked a few questions but it doesn't feel like an issue. Yet. He doesn't ask if I'm tired, rather if my energy levels are okay. Should we clone him???


So how am I finding it?


A bit scary and overwhelming. But enjoyable. I think it's important to be out of your comfort zone once in a while. But only if your health can cope!


Even just messaging is wearing me out but I'm quite excited. The adrenaline realised however is proving problematic. Adrenaline is exhausting. It's going to be my biggest challenge I think. It's a big reason why I've avoided this whole thing! I think I suffer from adrenal fatigue...

Adrenaline can feel toxic and like poison. I can actually feel the nerves in my arms, for example, prickling as its released. It's a bizarre feeling - to feel like you can feel the adrenaline rushing around your body.  Excitement triggers it. Nerves trigger it. God help me if/when the day of my first date comes around.

Raining on my parade


So there's a nice man who I've agreed to a date with. (It all seems very fast!) And just like that the excitement was gone. Trying to find a date and time around his work and my need for days of rest inbetween plans...sorting it out just wasn't fun anymore. I've been quite honest with him. You almost have to do the commitment chat before you've even met! "Look I know my health might seem full on so I completely understand if you'd rather nothing came of this..." 


I think, to date me, would be a huge compromise for many people. There is so much I cannot yet do. Day trips to London. I can't go for long walks. I can't go for any kind of walk without payback and pain. Sleepovers... 


Many people will think this is a hare-brained scheme. That I'm too poorly to date. That my energy supply rarely allows me to spend time with my friends never mind trying to juggle a new person in my life.   


And I'm laying here wondering if they're right. What on earth am I doing?! If nothing else, I'm testing the water.


I'll keep you up to date. 

Sunday, 7 December 2014

Paul Tomkins - We are death, warmed up

I'll admit it has taken me a few weeks to read and digest this piece of writing by fellow sufferer Paul Tomkins. You may have heard of him from football columnist fame. Now that I've taken it all in I wanted to share it with you incase you'd missed it. It is an incredible piece of writing. Here are a few extracts. 

Paul Tomkins - We are death, warmed up

"We’re not lacking energy and motivation because we’re depressed; we’re depressed because even the basics can be a drain. Our condition doesn’t go away when we are happy, or on those occasions when we’re able to have fun. And yet obviously anything in life seems a little easier if it’s enjoyable. Adrenaline will get us through on certain occasions, but the bigger the rush the worse we feel afterwards."

"If you – the healthy reader – do nothing but lie in bed for a month you will feel like we do, grow weak like us. Just look at the astronauts returning from months on the international space station, and how they’re too weak to walk. They have to be carried from the return module like newborn babies. But if, like them, you try to get better, you will. We won’t. We know, because we’ve tried."

"At times it’s easy to forget that ‘normal’ people feel tired too, although, of course, they often like to remind you. The key is the word chronic in Chronic Fatigue Syndrome (although we don’t like that name as the illness is not just about tiredness). No one says to someone with arthritis, “Yeah, but I also get aches and pains.” Everybody gets aches and pains. That doesn’t mean they have a chronic condition. Everybody gets headaches, but that doesn’t mean they have something seriously wrong. No one says “I get headaches too” to someone with a brain tumour. People with M.E. get tired, and get headaches, and have a lot of pain, and their experience of them is frequent and ongoing."

"How do you imagine a pain greater than you’ve ever experienced, or a torment wilder than your own mind has endured? I’m not sure that you can."

To read the full article click here.

Thursday, 4 December 2014

Are we the real Undateables?

This post is MUCH longer than I usually like to post. It may well come across as pessimistic. I'd prefer to think that it's realistic. I don't need to be told that there are lovely, caring, understanding people out there. I'm not an idiot. Dating can be eventful with or without health factors. These are just my thoughts as of now. I mean no offence. I'm talking from my point of view only. 


Are we the real undateables? 

We can't even always tolerate being in the same room as another person because it is over stimulating!!! Never mind get out on a date or even have someone come for dinner. 

A long time ago a friend of mine asked me to blog about dating with a chronic illness. I haven't tackled it before because I've actually only been on one date since being ill and I felt so ill I can't/don't really want to remember it. 

I'm being super brave and sharing this because I know there's so many of you in the same boat. I'm not usually one for sharing details of my love life (ask my friends) but I'm going to share a few posts with you. Starting with this one. 

I think I'm alright. I have plenty to offer someone I'm sure. I don't think I'm a hideous person inside or out. So there's no need to think I'm down on myself and wallowing. I'm not. I'm just honest.

Online dating doesn't have the stigma attached to it that it once did. I'd still much rather meet someone the old fashioned way. But I rarely go out so we have a bit of a problem there. I've dabbled with Tinder. I joined out of boredom and not in seriousness. If you need a chuckle you really should join. It's a dating app. Apparently. It finds you all of your local singles and you decide whether you like the look of them or not by swiping left or right accordingly. If someone has 'liked' you and you've liked them you get a 'match' and can then message each other. Or not. I did a tiny inward dance every time I got a match just because it felt good to think someone still thought my recent photos were likeable.
It's terribly shallow and goes against my mantra of not judging a book by its cover. But it can be hilarious!!! One man had bright pink hair. Many others have photos of them on their wedding day. On a dating site! Wow she bagged herself a winner there huh. But the worst ones don't show you pictures of their faces...get my drift? Classy.

So during an insomnia fuelled ipad session recently I joined Plenty of Fish. I'm just browsing you see. There are so many single men out there. Who knew?! Not me. I've hardly been out of the house these past few years. But I've found that more than a few are only after one thing. 

Cue cringeworthy messages with grammatical errors and spelling mistakes. 

I've been half honest and uploaded a recent photo (with make up!) and written in my 'About Me' section that "life hasn't quite gone to plan since graduating." I've had some nice comments about that bit actually. It kind of warmed my heart but there's nice people out there, even if they don't know the extent of what I'm hinting at. I've said I need a date for a wedding next year which is also half true. It's my cover! I'm too chicken to even pretend that I'm actively looking for a relationship.

I've had quite a lot messages. Some nice, some normal, some not! Many of them ask "How are you?" Or "How was your day?" And I'm like waaaaah!!! How much do I say?! How do I answer that?! So I opt for "not too bad" and hope it don't come across as too downbeat, or tell them I've had a good day because, well, for me I have. I'm showered and dressed for goodness sake! Woohoo!!!

I tell people I love sport and they say I must be fit. I change the subject. They ask what I do for fun and I'm not really sure what the answer is. What do I do for fun? Fun? What is fun anyway? I find it fun to be able to cook myself a tray of oven chips and fish fingers. 

People ask if I like to travel. Hahahaha. Oh deary me. Life with a chronic illness seems so far removed from the rest of society. It doesn't go down too well that I still live with my parents.

I skirt over employment questions. I've said in my 'About Me' bit that I'm currently unemployed to avoid having to answer the same question over and over. I've said I'm working on few projects at the moment. Meaning learning to sew and hoping to sell some of my makes, finding low energy hobbies, working on recovery. I don't say I'm a blogger because they might ask for a link and I don't want to jump in at the deep end.

Yes there will be people out there who look past and even embrace my illness. But very few will understand that I might not always be able to reply to a text message let alone meet for dinner next Wednesday night for example. Urgh. 

Some of the people I've met online have dug their own grave (so to speak) by calling me babe or hun or sweetie or suchlike. Urgh. Don't do that. You don't even know me. My name is Anna. Use it. Fool. (Edit - someone else just called me chick!)

My energy levels dip in the afternoon so while it might say I'm online I'm not able to reply to any messages coherently. This could easily be misinterpreted. Being honest might solve the problem but why should I have to share so much about myself so early on? 

I gave my number to a couple of men and immediately just wanted to throw my phone off a cliff or something. I'm so out of practice! I have been single for even longer than I have been ill (poor me!) Maybe I've become too set in my ways. 

A couple of others have asked to meet up. I immediately panicked. How do I explain that I can't possibly go on a date until February because of Christmas and payback and fortnightly plans? What will they think? 

Now my M.E. is still quite severe so I couldn't manage a walk or a trip to the cinema or an early evening meal that turns into a great night out. It's frustrating! How does one explain that all they can manage is a twenty minute coffee somewhere quiet?

 I couldn't manage to drive myself at the moment so it'd be "Uh mum I have a date. Yes I know it might not be the best idea while I'm ill but could you drop me in town and wait in the car incase I come over all funny/he's actually a massive weirdo?" I'm 26. I want to be able to take myself to such things and not feel like my 15 year old self on my first ever date at the ice rink. (That was kind of fun!) 

What would we talk about? Normal things I know but the majority of my answers would end in "but I couldn't manage that because..." or "I don't watch that because the suspense messes with my heart rate" etcetera etcetera. Gosh I would seem so boring! Even being upbeat about it, it'd become a drag quite quickly. 

Beggars can't be choosers but I'm not prepared to settle just because someone will 'put up with' my health issues. I deserve a proper lovely gentleman who'll take the highs with the lows and likes me anyway. I want to be liked for being me. Sadly though my health has an impact on my personality INSERT LINK TO PREVIOUS. I've got to get my head around that before I expect/let someone else to have a go. I believe it's hard to look past the illness when it is this severe. 

I told a friend of mine a while ago that I need a carer more than I need a partner. He recently said it back to me and it made me sad. He deserves more! He deserves romantic happiness. 

Are we really in a hopeless situation? 

Maybe we should just date each other. When one of us was well enough to go out the other wouldn't be! We wouldn't be strong enough to push each other in our wheelchairs! Oh but we'd understand what the other was feeling. Who's in?! Should we hold a raffle or work this out on a first come first served basis? 

I find it incredibly brave to enter into a new relationship while you're chronically ill. I'm not sure I'm brave enough. Would you like to share your story? Get in touch if you would. It can be published anonymously. 

Monday, 1 December 2014

Don't use the T word

I haven't used the word tired to describe how I'm feeling for several years now. I quickly realised that what I was feeling was not tiredness at all. Tiredness, as I had known it for twenty years, was something that everyone felt and was something that could be improved or made to disappear by sleeping. 

Tired is a ridiculous word, used to describe a multitude of things. It's a bit like 'nice' and 'fine' in a way. 

What I feel is not tiredness. I don't feel the need to sleep. Infact I often struggle to get to sleep. 

What I feel is exhaustion. What I feel is fatigue - to be so lacking in energy that you feel physically sick. Your muscles ache so much that it is painful. You have so little energy that you can barely move your limbs. And sometimes you actually can't - you experience temporary paralysis. That isn't tiredness now is it? You might moan after a long day at work that you're so tired you can barely move; that you're too tired to go upstairs to bed. But you do it don't you? You do move and you do go up to bed. Because you can. 

So you won't find me using the T word very often, if at all. I'll tell you I'm worn out instead. (If I tell you that  it actually means that I feel so exhausted I can't believe my heart is still managing to beat. Just so you know.) 

There are other words you won't find my using. Should is another one but I'll come onto that later. I'm too cream crackered to carry on today. 

Friday, 28 November 2014

Something about cells or something


Originally published in April 2013

A nice scientific title there for you!

Many of you will have seen this before but I wanted to share it incase anyone hadn't seen it.

From The Times, 23 April 2013 (story by Hannah Devlin, Science Editor).

"Scientists have found compelling new evidence of an underlying biological cause for the constant fatigue suffered by ME patients.

The study revealed abnormalities in the muscle cells of ME patients, which are likely to contribute to feelings of tiredness and the inability to cope with sustained physical activity that many experience.

An analysis of muscle biopsies suggested that the cells had undergone substantial changes, making them less able to cope with exertion.

The finding shows that, whatever the initial trigger for ME, which affects more than 600,000 in Britain, the condition leads to a cascade of physical changes right down to the cellular level.

Some patients still report facing stigma due to popular misconceptions that the condition is “all in the mind”, despite growing evidence that ME has real physical symptoms.

Julia Newton, Dean for Clinical Medicine at Newcastle University who led the study, said that the latest science was changing “people’s perception of this terrible symptom”.

Professor Newton presented the findings at a meeting in London yesterday marking the launch of a collaboration aimed at generating more research into the disease.

In the study, scientists took muscle biopsies from ten patients and ten healthy but sedentary volunteers.

The muscle cells were grown into small pieces of muscle and then subjected to “exercise” in the form of electrical impulses.

The cells from ME patients produced on average 20 times as much acid when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon a they begin to exercise.

The cells also showed other abnormalities, such as reproducing more slowly.

“We have found very real abnormalities”, said Professor Newton."

University of Newcastle press release | 23 April 2013



Wednesday, 19 November 2014

Diagnosis Day

On the 18th November 2010, after only a two and half month wait (many sufferers go years and even decades undiagnosed) I was diagnosed with Chronic Fatigue Syndrome at the Fitzwilliam Hospital in Peterborough. The neurologist was wearing a corduroy suit! The night before I did not sleep. I had never felt such fear and dread.

Every birthday week since has included a medical appointment of some kind. It's becoming the most boring tradition. This is my fifth poorly-birthday-week and I'm off to see my GP tomorrow.

I recently found a diary entry from the 1st November 2010 - 

"Beginning to wonder whether this is how it will be forever now." 

It isn't. It gets better. You learn to accept it. You even embrace it. You mould your life around it. You smile in spite of it. You let it win the battles so you can ultimately win the war. You don't fight it, you work with it. You become a partnership: M.E. myself and I. You find joy in the simplest of pleasures. You realise you are stronger than you ever believed before. You remain the master of your fate, the captain of your soul. 


While I was looking through old photos and diaries, I found this. 


This is the name tag I had to write for myself in early 2011 at my first CFS/ME session under the Lincolnshire clinic. I was too weak to get the lid off the pen. And look at me now... Still a very long way to go but it's less distance than I had ahead of me four years ago today. What a journey M.E. myself and I are on. 

Sunday, 16 November 2014

The Adventures of Anna Jones - It's way past my bedtime!

Those of you who follow me on Twitter or Instagram might know that I had a party to go to last night. A surprise party no less! I won't ramble on about how I was feeling. I'm sure you know by now that I am never without my symptoms. Yet it gave me a huge boost to hear that I looked like the 'Anna Jones' of old, and people I've only seen a handful of times commented on how much more lively and how much better I looked. (Some people are far from keen to hear people saying that they don't look sick or that they look well, but I like to take it as a compliment each time because I'd really rather not look as bad as I feel!)

Decisions, decisions... I have no idea what one wears on a Saturday night out anymore!

I ditched my glasses and reacquainted myself with contact lenses. I wore a dress because I don't get many opportunities to dress up properly these days. I even wore a pair of (low-ish) heels. Sorry legs! I didn't care that I was so sweaty my make up practically melted off my face and my hair lost it's straightened smoothness. I loved that I'd been wearing shoes long enough to get blisters. I didn't mind that my ears were ringing when I got home, or that it took an age to fall asleep after so much stimulation so 'late' at night.

Happy 30th Birthday Ross!

I couldn't ask for a better support network. My parents drove me, offered to iron any clothes beforehand, fed me, waited by the phone incase I needed a lift home NOW. My sister walked me into the pub and 'handed' me over to my friend. The girls fetched my drinks for me, found me places to sit, checked I was okay, took me for fresh air every so often, panicked if they lost sight of me(!), walked me out when my dad had arrived to collect me and 'handed' me back over. I lasted from 7pm until 10:30pm!

I am so much better than I was when my M.E. journey began. If this is as good as it gets, and I get to have a 'normal' few hours like that every six months or so, I will be so chuffed.

I am the luckiest girl in the world.

Wednesday, 29 October 2014

4 - What do you actually do all day?!

Dressed Days


Dressed days are split into two kinds: a) the days that are identical to pjs days but with lovely, attractive slob clothes (I have many!)

The majority of my days are currently A days.



The majority of my days are A days. I now have many comfy jogging bottoms and oversized tops that  are perfect for these days. Apparently it's not a good look but I love it! 

b) the days when I look a bit more 'with it', I'm clean and my hair gets brushed. These days are the best! I might manage a bit of sewing or reading (my current go-to hobbies) and I'm able to spend time online. On the very best days I might manage a little ten minute drive just to get out and about. I can eat my tea at the table with my family rather than on a tray in the sitting room.  

   
The best days are when I can actually DO things. They are few and far between but that just makes me appreciate them all the more. 


3 - What do you actually do all day?!

Pyjama Days

PJ days are spent lounging around downstairs with my luxuriant slanket 'cape'. I don't tend to watch the tele (until my brothers come back from work after 6pm and I have to endure Sky Sports News on repeat!!!) My mum spends the afternoon with me. We just sit and chat and I switch between Purple Time, staring out of the window and hopping on and off my iPad (no not like that!) Social media has been a godsend! I meet my online pals everyday and together we get very busy doing nothing. 



One must have a very good collection of pyjamas if one is going to be a full-time poorly person. (P.S. I can sit cross-legged now!) 


My view. To keep boredom at bay I alternate which sofa I sit on each day. Simple but effective.

If I can muster that little bit of energy to get dressed then I will. Every time. Pyjama days aren't a luxury for me but a necessity when the fatigue and exhaustion is just too intense. 

It's unlikely I'll manage much more than just sitting on these days. I'll eat in the spot I've been sitting in all day off a tray. There will be no shower or reading or sewing. But I try to make sure I stick my head out of the window/front door to get a blast of much needed fresh air. Many of my days could be viewed as dull, but I'm usually much too busy feeling poorly to notice.

Tuesday, 28 October 2014

2 - What do you actually do all day?!

Bed days

Bed days involve DVDs if I'm lucky and a hell of a lot of Purple Time. I might make it downstairs once to stock up on snacks. Each evening I always make sure there's enough to drink in my bedroom incase I'm not able to get downstairs the next day and there's no one home to bring me one. My family (or slaves if you like) tend to deliver my dinner/tea on a tray. 

I'm not able to use my iPad or my phone very much/at all on these days. The cognitive function required to do something as simple as send a short text message just isn't there. 



It makes me sad sometimes to have to eat in bed by myself. But needs must. I can't manage to sit downstairs and the 'hustle and bustle' of having just one person in the room is incredibly draining. Bed days are solitary. They can also be quite sad, but not often because I'm a right battle axe!

Next time you go up and down the stairs think about what that takes. You need good balance. You need enough momentum behind you to lift each leg - to push off and make the next step. If you've been mostly immobile for a fair while you won't be fit either. This plays its part too.

In the Summer there are Garden Bed Days. This outdoor furniture is probably the best thing I've ever bought. 



 

1 - What do you actually do all day?!

Sometimes I can't help but think it's like my life is in two halves. The one you see and the one you don't. 

After sharing my recent milestone with you (Finally!) it became clear to me that some people thought that it was to become a common occurrence; something I could do on a daily/weekly/monthly basis. I'm afraid you're wrong. I might manage it once or twice a year if things go according to plan. I will be over the moon if I manage to do it as regularly as that!

So many of the milestones I share with you are one-offs. Lovely but rare. When I tell people this, they often seem a little bit confused. "So what do you actually do all day?!" they ask, while trying not to frown in bewilderment, when I tell them I don't watch much television and so haven't caught up with the latest soap opera or drama series. 

Well my friends, the answer is it depends. I can usually tell as soon as I wake up what kind of day it's going to be. A bed day, a pj day or a dressed day! Regardless, I am ill everyday. What do you do on your days off sick? It's not fun and games is it. 

I've split this post into four separate ones to help those like me to read and digest it at their own pace. I just wanted to give you an insight into my days, for those who are wondering. 

   
I have such a complex skincare routine these days...

I've tried and failed to list the few things I do everyday without fail. Nothing is set in stone, except for the fact that I wake up! I can't always manage the basics: washing, dressing, brushing your teeth, eating (although I'm always able to power through eventually and eat something in spite of the nausea!) I get out of bed everyday. Even if it's just to nip to the loo. There are far fewer bed days than there used to be. I've come a long way. 

Before you wrinkle your nose and think I'm a little greb for telling you I can't always wash my face or brush my teeth, never mind shower, I want you to do something for me. 

Next time you lean over the sink to splash your face with water see if you can feel the muscles in the back of your calves becoming tighter, and your quadriceps straining as you bend to lower your face to the sink. See if you can feel the pull of your back muscles as you move your arms to and from the sink to your face. Try doing this when your body is screaming at you as if you've just ran the London marathon. With a hangover and the flu. No doubt you close your eyes to wash your face. Imagine doing this when you feel off balance. It's both risky and disorientating. Such a simple task requires a certain amount of energy. An amount I don't always have. Face wipes were invented for days like these! Showers are often replaced by a good old baby wipe or too aswell. Such is life.

Brushing your teeth is perhaps even more problematic. It's quite a vigorous exercise! I have an electric toothbrush in one of the bathrooms now (more than one bathroom, how ra!) This helps a lot! My arm still has to be raised to my mouth though. This makes the aching worse and not surprisingly so as my limbs weigh a tonne! Ask my sister. It seems I've lost all muscle tone and so am now a dead weight. Lifting my own limbs isn't always easy - hence why I might drag my feet when I'm walking sometimes. 

Anyway! 

Washing your face and cleaning your teeth are luxuries my friends! 

I still have my food cut up for me on the whole but I haven't had to be spoon fed in AGES which is wonderful. My evening meal is always cooked for me and, depending on what kind of day it is, so too is my lunch but I can sort myself out with a cereal bar for breakfast (Michelin star chef in the making!) I can use the toaster (for toast obviously) and the oven to cook fish fingers (or some other nutritious midday snack) some days. I have a cooking-timer-thingy that ensures I don't forget about the oven and I'm now very good at remembering to out oven gloves on. Hooray!