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! 


Thursday, 16 October 2014

Happy Birthday Blog!

M.E. myself and I is 2 years old today! 


For someone who doesn't do very much it seems I still have an awful lot to say!

My blog is solely about my ill health and so it really can't be all that exciting or captivating. Yet it has such a healthy following and for that I am baffled/astounded/proud/flattered/grateful. I'm hoping I'll become better at replying to your comments/tweets/messages... It's about time really isn't it! 

Thank you for taking the time and energy to read M.E. myself and I and ultimately for coming along for the ride as I navigate my way through the maze that is chronic illness. I hope I have helped you understand this complex illness in some way - that's what this was all about in the first place. (I reasoned with myself that I couldn't possibly expect people to understand if I wasn't honest with them.) Or perhaps the blog makes you feel less alone as you plod along on your own journey to better health. Safety in numbers and all that. 

I hope today is a nice one for you. 

Anna xxx

Wednesday, 15 October 2014

Adjusting to Autumn

There has been a fair bit of Awful since we last spoke. I've been 'busy', or certainly busier', so it's all to be expected (although sometimes that doesn't make it any less rubbish.) 

Autumn is my favourite. This may or may not have something to do with the fact that my birthday is in November. Even you sun worshippers can't deny that this is a beautiful time of year. I'm lucky now that I live life so slowly that I can actually notice the leaves changing colour day by day. 
Such pretty colours
With each season change though changes have to be made and hurdles to be overcome because of my complex health condition. 

With the darker nights I quickly lose track of the time. I keep thinking it's only evening even though it's dark outside but before I know it it's 8:30pm and I should really be upstairs getting ready for bed if I want to have any chance of getting to sleep before midnight. The same happens in the summertime when I have to force myself upstairs when it's still lovely and sunny outside. 

So I have to keep an eye on the time (this chronic illness things allows no breaks - you've got to be on your toes constantly, in one way or another) and adjust my routine accordingly. It can take me even longer than usual to get going when I wake up during the Winter months. 

With the darker mornings and lack of sun I tend to leave my blinds half open during the Autumn/Winter to let the morning light in, in a desperate attempt to make it easier to wake up each morning. I can't tell you of the struggle I face each morning! Who knew eyelids could be so heavy? And who filled my body with concrete during the night?!

A while ago I invested in a Lumie light (Bodyclock Starter 30) because I'd heard from others that such lamps offered a lovely natural light. For a few weeks I used it in the mornings (waking up to the gradual brightening light) and at night (to coax myself to sleep with the gradual dimming light.)

I don't wake up to this anymore. It had a near-disastrous effect on my health. I woke up shaking from over-exertion as my body clearly felt it was being woken up too quickly. I do still use it as a lamp though and it's particularly lovely on these dull, grey days. 

I don't know about you but I love a good Fresh Air Fix. I don't get one everyday but I leave a pair of easy-to-get-on shoes by the door so I can get a blast of fresh air whenever I'm up to it (and not get soggy socks if it's raining or damp.) I love to plonk myself on the front step every now and then just to be outside. 

Fresh Air Fix! It's all about pyjamas, dressing gowns and wellies.
I struggle with the central heating. I wonder if it is some kind of chemical sensitivity thing. I sometimes get a similar 'reaction' when the oven is on. I just don't feel as if I can breath all that well when it's on. My energy levels deplete with the increased temperature. My eyes don't seem to be able to open properly. Maybe the heat just makes me drowsy. I am yet to come up with a solution for this one. Watch this space and let me know if you experience anything similar so that I don't feel like such a dysfunctional human being. 

Many people find their pain rocketing during the colder months. Im very lucky that I don't suffer terribly with pain like many other sufferers do. I do have handy head packs and a trusty hot water though. I cannot get to sleep if I am the slightest bit cold (or hot for that matter!) so thick, cosy socks and a teddy bear throw have been dug out of the back if the wardrobe ready for the temperature drop. 

I hope you're able to combat the season changes somehow too. Stay cosy!


Wednesday, 1 October 2014

Finally!

Ladies and gentlemen this is what I've been building up to for four years. 

I have finally (FINALLY!) managed to drive myself to meet friends for a coffee and then safely drive home again. Independently!!! 

I've driven myself to the post office a few times, managed Operation Ice Cream and even managed to shuffle to the chocolate aisle in Sainsbury's (The Sainsbury's Experiment) by myself but this was the big one. I have been dreaming about this one for four years. You might even remember I've tried it a couple of times before with only disappointments and one almighty tantrum to show for it. 

Driving myself into town takes only 3 minutes. I then had to find a parking space. The disabled spaces I'd been hoping were available were already taken. But I found a space just a little bit further away. Jackpot! I then walked by myself down the High Street. I did get a bit flustered about what would happen if my symptoms suddenly kicked up a gear but I had my medical ID bracelet on so I hoped that some kind soul would come to my rescue if I came over all 'funny'. My parents were away and my brothers were out but Not-so-big Sis lives in town so she would have been my Emergency Contact had I needed one.  


Red Lion Square, Stamford, where I met my friend. Photo taken a few weeks ago when I went to the bank with my mum. Rock and roll!

I went to cash point. A cash point! Remember them? And I even remembered my PIN number - something even you 'normals' seem to struggle with! Spurred on by adrenaline and the excitement of being out independently I popped into Savers (love a bargain, me) on my way past to stock up on a few toiletries. Just like a normal person!!! I got the money out of my purse and handed it over JUST LIKE A NORMAL PERSON! Sounds ridiculous doesn't it but I haven't had to do that very much over the last few years and something as ordinary as paying for mouthwash and razors can actually be beyond me. I had almost forgotten that you have to hand over money to buy things. You can't just have them. Silly I know, but my brain seems to forgotten such simple things. Such things are no longer saved in my subconscious. 

So I met my friend and we wandered to The Cosy Club (such a good name) where we sat on comfy sofas and it wasn't very busy. Two pluses! I didn't have to walk to the bar to order my drink. My friend did all that for me. Thank you! We were joined by another friend and together we chatted and reminisced about our primary school days and caught up on each other's lives for a good hour. Wonderful! I felt so touched that my friend reads my blog and actually quite proud of myself that you could tell from her understanding that she did so. 

I wasn't M.E. free. Of course I wasn't. I never am. I could feel it in my legs even on my walk from the car. I had that poison-running-through-my-veins feeling that is perhaps one of the worst symptoms I get. My head felt a bit 'tight'. And obviously the good old, ever-present fatigue and exhaustion came along for the ride. The day before I'll admit that I was feeling quite pathetic that such a 'small' thing as going for coffee has become the biggest of deals. But on the day I felt incredibly proud of myself, before I'd even set off on my adventure. I wasn't anxious or nervous anymore. I even looked as near to the Old Anna as I can get. 

And the icing on the cake? That the day after I had a message from this friend just checking in to see if I was doing okay after the exertion of it all. I am so touched.

Time for a new goal!