ChronicallyMe

Tuesday felt like a Friday.  Wednesday I thought it was Tuesday.  Thursday I thought it was Wednesday.

Pancake Day passed me by.  I keep thinking I have missed Valentines and it is now late February.  Hang on - when did January end and why didn’t I notice?

 How to keep track of time and space:

- Sunday is slow 

- Monday comes after Sunday 

- Tuesday is CSI night

- Wednesday is bin day (though I sleep through the bin men now)

- Thursdays are funny (says BBC 2)

- Friday is … well Friday

- Saturday is the weekend for my honey … sport on the telly … maybe a curry

Hmm.  It doesn’t take much to throw the days out when it’s mainly based around the evening telly schedule and asking your hubbie “What day is it?” repeatedly.

Sometimes I think only taking a daily photo self portrait marks the passing of time for me - makes each day seem a day in it’s own right.  Otherwise I wouldn’t be sure if today was the one where I did such and such in the morning (or not).

As for relying on the rising and setting of the sun, the amount and intensity of daylight to feel the time of day or year … well one rainy day can throw that out too.  Even the trees are confused as to what season we’re in.  As long as it’s not just me eh?

The week on the coast was a welcome change but it wasn’t quite long enough for me. Mainly because I only seemed “ok” enough to go out or do anything very much every other day - and even then it was pretty limited.

It’s frustrating when even after all that planning and preparation - my body lets us down.

But I DID get to go for a long wheelie walk with Growler pushing, listening to the seagulls gossip and got to take lots of pictures.  It was quiet with just a handful of other people walking by the sand flats on the way to the harbour and around three quarters of them said hello or smiled.

I also got to have another mini wheelie walk to a rather lovely disabled viewing platform overlooking the spectacular Holkham Bay (and more photos snapped).  We decided to walk round to the second viewing point but the path (with bobbly stones) got to be a bit of an ordeal in the wheelchair when I was already nursing recurrent nausea and sudden urges to pee.  Being in a wobbly wheelchair is not the best under those circumstances.  But more views and more pictures and lots of bracing fresh air!

Plus we managed a couple of lunches out and our self catering accommodation was cosy, compact and all on one level.  A wonderful luxury to be a dozen footsteps to the bathroom and the same again to the sofa.  Pyjama bliss.

The absolute best thing about the trip for me was that Growler switched off from work and home (all save the background worrying about sickly wifey). 

The overwhelming feeling for me is of a very nauseous week with lots of abdominal cramping and a disappointment that I, no that WE couldn’t do more.  I wasn’t even capable of conversation for most of my “off” days.  Not much of a romantic getaway!  Although I’m sure Growler enjoyed the peace ;) 

I know I must be grateful for the small things and count my blessings.

You can see some digital pics here

I feel like I should be doing something.

What I actually need to do is to rest (and rest and rest) to conserve energy and recharge that faulty battery of mine so I can have a Wednesday and Thursday of doing. 

Wednesday and Thursday will be spent in Derby with dentists, meeting friends, a work farewell lunch and an overnight stay.  Plus no doubt a burning desire to take like a zillion photos.

Maybe I have peaked too early in my mental preparations.  Maybe I want to be doing to escape the head spin I am in over shopping and credit card.  I have purchases I want to make, purchases that need to be done NOW to qualify for special offer, a big refund pending with no news of when it might come, a need to ensure I am going to be here to take the deliveries and a stupid crappy credit card limit that makes purchasing everything I want right now impossible.  Argh!  It also took me 3 days to decide on the clothing I wanted to order and now I have a cold sweat about spending money on clothes - and where I’m going to put them.

Sigh.  This has always felt complicated but even more so these days.  I went through a spend first think later phase in my twenties which got me into a lot of trouble.  So now I like to try and hoard my money and make it stretch.  But CFS gets me muddled - I know I am getting bargains because I spent days and days pouring over things.

I’m rambling I know I am.  Sorry folks.  I can’t relax until this stuff is sorted and I can’t sort it until … erm … later?  Who knows.  Maybe I am more nervous about my work end that I thought.

I think I’m going to have to ask Growler to give me some simplifying logic to all this

PS: Later … Growler to the rescue.  Shopping expenditure underwritten

I’m not able to clean my house. Let’s face it I’m doing well most of the time to keep myself clean and even that is a constant struggle.

Growler does such a lot of the household tasks already. Cleaning has sort of always been my contribution in the past - as he does washing, cooking and all the stuff I found difficult anyway because of my back problem.  But I can’t clean now.  I haven’t got the energy or the stamina.

So the house has been getting progressively more and more grotty.  Growler hoovers regularly.  But things like dusting, mopping floors, cleaning the bathroom, cleaning windows … have all fallen behind.

It’s a difficult house to keep clean anyway - it’s old and the windows are drafty which combined with a lot of building works around our house (all year round it seems!) really doesn’t help.  Not to mention having a cat, old carpets, a slight damp problem and three adults knocking around the place.

I hatched a secret plan to clean just a little bit every day and quietly work my way through the house.  It hasn’t been working.  After a week of doing a little when I’m able in the bathroom - the stuff I cleaned at the beginning is already dirty again.   So I tried to do a bit more yesterday - just to clean one corner of the bathroom floor, just a square foot.  It ended with me sitting on the bathroom floor crying at the futility of it all.

It’s not just a pride thing, or a cosmetic thing - I am genuinely concerned about the health effects of living with dust and grot when I spend nearly every hour in this house.

I need help.  It’s the only answer.

So I asked my brother (our lodger) if he would clean the bathroom this week sometime.  And with Growlers encouragement wrote a list of chores that desperately need doing and pinned it on the fridge.

Today starts with Growler dusting and hoovering the lounge.  I can hear the hoover in the room below me and later he comes to check on me a little flushed and grinning with pride from his housework exploits.

Now I can hear the whoosh of water from the taps and the gentle knocking of the bathroom getting a good scrub at the hands of my brother. 

Through the wall I hear the efforts of cleaning as I sit in bed doing … nothing.  Nothing except wrestle with some guilt pangs.  First guilty that I am not able to keep my house clean.  Second guilty that I am not able to just get up and get on with such tasks.  Third guilty that I am subjecting other people to doing the cleaning.  All of which are silly I know.  There are things that need doing and people capable of doing them - so, that’s that.

So why do I feel so dirty?

I am a rollercoaster of emotions.  When I’m sinking I think my happy moment are just me treading water with my head bobbing on the surface.  But really my happy moments can be pure joy.

There are moments when I think my brain is playing a new trick on me. 

My brain function has been pretty good recently (relatively speaking).  I can read and make sense of things, have indepth conversations with my husband Growler, understand the news, laugh at subtle jokes.  It’s been wonderful.

I still can’t remember what day it is very easily, I often forget what Growler tells me a moment later (he told me it was time to take my IBS tablet whilst I had my head in reading a blog post … I said ok reached for my bag and forgot why I had my bag in my hand … hear Growler in the kitchen … oh yes probably IBS tablet time … put tablet in mouth concentrate on putting bag back down … forget to swallow tablet … why do I have a tablet in my mouth … oh I need to swallow it … why can’t I swallow this tablet … oh I need to drink something …. argh!!)

Well anyway - generally it’s a bit better.  But I am forgetful.  And I wonder if that’s fuelling my emotional ups and downs.  Because I forget the good things and plummit into feeling low.  Or forget the sad things and wallow in the joy.

I’ve lond had a problem where I can’t let go of stuff that’s worrying me - because I forget that I (or with Growlers help) have found a solution.  Even though I have an answer I keep dragging it back up to worry about only to eventually remember (or be told) that I have a satisfactory solution.  So even though I have the union sorting work stuff out for me right now it doesn’t stop me wondering how to fix the work stuff … oh yer - the union is on that for me.  Round and around.

Sure I have a few things on my mind at the moment.  I’m going through some sort of phase, or new layer of grief, or new movement of progressing with my life with CFS.  So emotions and anxieties are running a little high.  But my brain really isn’t helping matters.

Thought I would share a few things I have found useful for saving energy and surviving brain fog since I’ve had moderate-severe ME/CFS/CFIDS. 

Not all of them might suit or make sense - and not everyone has the budget for things like a new bed.  It’s a personal list and maybe you might find some of it useful.

- Electric Toothbrush

I didn’t think an electric toothbrush would make a lot of difference - but it really does.  I use a Ultrasonex which uses ultrasound as well as the vibrating bristles to clean your teeth.  It’s fairly lightweight and even on days when I am exhausted and haven’t the energy to do a long/proper brush I know the electric brush will do a better job than a manual. 

Mine costs under £20 off ebay (my model doesn’t seem to be on sale at the moment so they may be brining out a new version).  Even my dentist was impressed.  After using it for just a week I went from needing a double scale and polish to needing just a quick scale and polish by the dentist.  Let the brush do the work I say.

- Grabber/Reacher

I’ve had a grabber/reacher for quite a few years now because of my back problem.  But I’ve found it handy for energy saving with CFS too.  It gives me a longer reach so saves me having to move or get up just to pick up something for instance.  I can even open the curtains whilst I’m still in bed thanks to my grabber.  I use it for putting on my shoes without bending down, picking up post or dropped items - even for fussing the cat sometimes!  You can get these for under £10 if you shop around.

- Wheelchair

I bought a lightweight wheelchair earlier in the year to help conserve energy on outings.  It was a difficult step to take but itdoes make a huge difference.  I couldn’t afford an electric chair and they are often quite bulky to transport in a car - so I went for a good manual chair.  After all I haven’t been out anywhere onmy own in over a year.  So I usually have someone to push me. 

Even on days when I feel well enough to go out using the chair means I still feel well at the end of an outing.  I can participate more and I don’t slow everyone down as much I used to.  Outings used to be about small short bursts of energy/walking and looking for benches.  Using a chair gives a lot more freedom and flexibility.  And it also means I am not paying with post exertional malaise for days or weeks afterwards.  I

If you’re going to invest in a chair I would say spend as much as you can afford to.  Cheaper chairs are often heavier making it harder to manoeurve and for your friend/carer to store it or throw it in the back of the car.  Also I think it’s important (and less tiring) if you are comfortable.

I’m also considering whether a four wheel rollator might be useful for days when my energy level is a little better.

- Drinking water

Oh I get so sick of people telling me to drink lots of water!  Sigh.  I don’t want to be one of those people.  BUT.  I have noticed that sometimes when I suddenly feel very tired or run down, that taking a few minutes to stop and drink some water can really help.  And it doesn’t really cost anything to do so I figure it can’t hurt. 

I normally use a 50cl plastic water bottle because I can put the lid on and keep it ight next to me at all times. 

Be careful with plastic bottles as they supposedly start to release chemicals after a while.  I now use a Belu bottle of water - which is made from corn (yes really!) and refill it with tap water.  We do have a filter jug which we use for tap water as it helps remove some of the chemicals and it just tastes better! 

I tried using a Sigg bottle (which has non toxic inside coating) but found it a little bulky and (though it might sound silly) the screw top needed too many turns and it wore me out!

- Screen Reader

Earlier in the year my brain fog was particularly bad.  I found it difficult to read anything more than a few lines of text.  I still struggle with large articles, blogs, emails etc especially with long paragraphs. 

I installed ReadPlease on my PC.  It’s a programme that will read out text to you - you can copy and paste text from any document or web page and it will read it to you.  I find this very useful and it helps me to comprehend better.  There is a free version which is excellent. 

I upgraded to the ReadPlease Plus edition which lets you add pronunciations and anchor the screen readerto the top of your screen amongst other useful things.

- Adapting my PC

To help with typing and with reading on the screen espeically I applied some adaptions to my PC.  This is free to do and helped make things easier for me.  I use a pale yellow background as it makes text easier for me to read. 

There’s great instructions about altering background, font sizes and other things in this article.

- A comfortable bed

Not something we can all afford and a huge effort to action I know - but I am so glad we bought a new bed last year.  Lots of room (king size), comfortable mattress and a sloping headrest so I can sit up in bed comfortably.  You definately need to enlist help to install a new bed. 

You can also now buy mattress toppers to add comfort, as well as specially designed cushions and back rests for sitting up in bed comfortably.  I think you spend such a lot of time in bed - especially if you are a CFS sufferer - it’s worth being really comfortable.

- Tidy as you go

I am such an untidy person by nature.  But I have found that the only way to stay sane with CFS is to put things away as you go.  It saves me brain power (”now where did I put that …”) and energy to tidy the things I use as I go along. 

Tidying a big pile is exhausting.  It’s much easier to do it a little at a time.

- Keeping things where you use them

In addition to tidying I’ve found it useful to keep things in the places where I use them.  So I keep  the medication I need to take at night next to the bed.  I also keep earplugs, tissues, pain killers, mouth guard and intensive moisturiser right next to my bed within arms reach.  I emergency snack bars in an accessible spot in the bedroom - so if I am exhausted I can still stem my hunger without a trip downstairs.  I keep a second home phone within grabber distance of the bed.  And so on.

I also use my handbag as a portable stash of stuff of important stuff.  In there I keep medications, sketchbook, pen/paper, bacterial dry hand cleanser, etc.  That way there are always just an arms length away.  The trick is keeping the weight down so it’s not exhausting to carry around!

- One trip multiple purpose

When it takes a lot of energy to move about I try to make the most of every trip.  So for instance if I am downstairs I will combine a trip to the toilet with a small detour to the kitchen to fetch a drink.  Perhaps when very tired I will combine a toilet trip to the bathroom with brushing my hair, or brushing my teeth so I get one hygeine task done at a time. 

- Notebook as a memory extension

I use a small (A7) notepad to make lists of things I need to remember or have to do.  It might be a list of every single thing to do that day (when my memory is very bad), or a note of something someone has asked me to do.  I also jot down any expenditure I make on online shopping so I can tally it up once a week or so.

Writing things down can really help when your cognitive function and memory are poor.

- Repeating things / Talking out loud

I find a useful cogntive/memory trick is to repeat things and say them out loud.  It’s simple but effective.  When you’re asked to do something, or often for me when I ask a question and get an answer - I find repeating what has been said out loud very helpful.  It clarifies that I have understood the words said correctly and helps to sort of get it set into my mind. 

I also find that talking out loud can help when doing tasks is difficult.  If I say out loud what the next step is in making a cup of tea I can usually get through it successfully.  You might feel a bit silly but it does help.

- Minimise noise

I found early on in CFS that I find it incredibly difficult to have a conversation whilst the television is on.  I find background noise adds to my confusion and makes it hard to concentrate.  So usually I don’t listen to the radio or have the tv on whilst I am doing other things.  Sometimes I find turning the sound down on the TV during ad breaks very helpful.  I often find adverts over stimulating and they are usually a lot louder than the programme you are watching.

I also have ear plugs and have recently bought a pair of ear defenders - so if I have unwanted noise during the day (like building work, garden tools, etc) I can block it out.  I often find this kind of monotonous intrusive noise quite stressful.

- Excel for budget tracking

I have used Excel for tracking my monthly budget and expenditure for many years.  It’s how I got myself out of debt and stayed that way!    I have different categories of expenditure (like regular bills) and then sub tables for every day things which add up the total and show me how much I have left that month.  It’s a useful brain saver because once you’ve set it up it can do all the maths for you.

- Use a friend

In the nicest possible way use a friend.  Whether it be for practical or emotional support.

I also like to use my friends when I am struggling with poor cognitive function to find out what I would do normally.  If I feel lost or confused they know me well enough to see clearly and have a good guess at what I would do or say if I was well.  They also remind me how that confusion is a temporary state.

- Digital Hard Drive Recorder

Another expensive item which isn’t practical for everyone.  We had ours as a wedding present.  I’ve found this invaluable.  I like my telly programmes but sometimes I’m not in the right frame of mind to watch them.  Often the good programmes and films are on late and I need a decent bed time these days to get my 10 or so hours of sleep.  With a digital recorder it’s easy to record programmes and watch them when it suits me.  No need to get off the sofa to change a tape or DVD - just point and press to watch a programme.

I’m also able to record some daft telly that only I like in our house so I have trashy stuff to watch in the day when I’m not capable of anything else.

- Online shopping

Without online shopping I don’t know where I’d be!  I’m not able to get out to the shops by myself - and even with help it’s an exhausting affair.  With online shopping I can take as much time as I like selecting items and shopping around for the best price.  I can order any time of the day or night.  And as items are often cheaper than on the high street it offsets the postage costs.  I also figure I am not using petrol/parking charges or bus fare so postage is ok to pay. 

I’m also able to buy some items which would be difficult to source in my local shops - like some vitamins and suppliments.  I also now have a credit card with cash back so I’m even making a few pennies when I shop.

- Keeping in touch via the internet

The internet has without a doubt been an absolute life line to me.  It is my main means of keeping in touch with the outside world.  I find online communication much easier than phone or face to face.  Using Facebook and MySpace gives me an easy way to keep in touch with lots of people simply - a way to tell them what is happening in my world and vice versa without a big fuss.  Email is great for more personal contact and exchanging photos and so forth. 

I also blog and use other social networks like Flickr to make connections with people with similar interests, outlook and so forth.

- Answer phone /  caller ID

An answer phone is an essential piece of kit when you find talking on the phone difficult.  I struggle with non-social calls (although even social calls leave me exhasuted at the moment).  So if I don’t recognise the number (which is where caller ID is very handy!) then I can leave it to answer phone to deal with later or refer to hubbie, etc.

- Lowering your standards

The simplest energy saver I have found is to lower my standards!  My house isn’t very clean. I don’t bathe or wash my hair as much as the average person.  I often spend half the day in pyjamas.  When I wrap a present I’m happy it’s wrapped and not bothered if it’s not perfect.  When I chat with friends or write a card or say hello to a neighbour it doesn’t matter if I’m tired or slurring or get mixed up.  I don’t have to be perfect.  And even though my house isn’t clean, my clothes are scruffy (but comfortable) and my hair is unkempt the world doesn’t fall apart.