ChronicallyMe

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.

Sometimes - when a relatively pain and crushing exhaustion free moment floats my way - I find myself thinking of things I can do.  Brilliant ideas for using my time.  They are usually - plainly ridiculous - because whilst I’m capable of thinking them up and aspiring to do these things, the truth is usually I haven’t even managed to get dressed or have a wash. 

It’s like a state of high (but optmistic) denial.  The list of brilliant Things I Think I Can Do includes:

• Go for a walk (on my own)
• Go out for the day/afternoon with Paul
• Paint something, a canvas - maybe an abstract as I’m not sure what
• Go back to work (ha!)
• Housework (of various kinds)
• Gardening
• Tidying/Decluttering/Reorganising various parts of the house
• Start house and mortgage hunting
• Start an internet mail order business
• Play badminton in the garden
• Go for a bike ride
• Have a cup of coffee (not a good idea with my stomach)
• Play loud music and boogie
• Book a fun evening out
• Organise a party
• Dye my hair
• Start an online course or study a new subject
• Read a book
• Drive to my moms and take her for a lesson in my car

Oh there’s more - but you get the idea?  All things that are ordinary and do-able … but just not for me right now.  Not when I can’t even put my bra on without needing a rest after.  Sigh.

It’s going to be a self indlugent rant come pity fest this post I think.

I’ve been thinking a lot about Screw Bronze’s blog post at Ouch about the silent life of disability.  About how some things you don’t get told about - because we try to keep certain things private (understandbly so).

I’m feeling.  Feeling a sort of overwhelming sadness, with smatterings of frustration and a hint of “it’s all hopeless”.

Everything which is average for most people - WAS average for me before - is now so all encompassing. 

Yesterday hubbie drove me to my dad’s and we drank tea and chatted for a couple of hours.  I enjoyed myself, I laughed, I belly laughed, I talked a lot.  After 1 hour and around 40 minutes I started to slow down - my speech, my reactions, my comprehension.  I felt kind of drunk before I even left the house to go.  But I was really drained after chatting.

What I hate is that friends and family feel they have to apologise for me feeling rubbish - that because we talked and laughed and it made me feel worse they have to say sorry.  They feel responsible.  It’s not fair on them to think that way.  It’s no-one’s fault.  Being able to chat for 2 hours in a light easy loving way shouldn’t be difficult! 

But it is.  So where does that leave me? I also asked the question - do I have to offset the emotional boost these kinds of visits give me against the physical price I inevitably pay?  When did I get to a point where this was so difficult?  Or was it this difficult 6 months ago and I pushed harder (and paid more)?

Argh!  What the hell happened to my life?

Next week we have a family celebration back in Wales with hubbie’s side of the family.  Just a quiet family meal out somewhere nice.  It’s over a week away.  Yet hubbie has already mapped out an energy maximising plan for (me) in terms of travel and so on.  And I’m already trying to plan how to conserve enough energy to get through it - and with luck to get through it without anyone much noticing I’m anything but normal. 

So I’m figuring out when I should have a bath so I can wash my hair to be half reasonably presented on the night.  And whilst hubbie has a plan I wonder if it involves minimum number of trips up and down stairs to get changed and so forth.  Because that’s my level of detail to conserve energy.  We’re not talking a quick sit for 20 minutes to boost the old battery.  We’re talking how many time I have to put a sock on and take it off.

It’s one evening.  I’ve been planning for a month - so I’ve avoided doing other things in an effort to recoop some energy and avoid expending it prior to this.

This weekend there’s a live arts event I really want to go to.  I think it would do me a great deal of good to get out and see different people.  To mic in that world for a while.  BUT even the effort of getting into the city - just of sitting in the car for 30 minutes and arriving at the venue already seems like too much.  Especially with this family celebration to attend days afterwards. 

I am seemingly down to one thing/trip a fortnight - possibly a month if it’s “big” (ie. more than one person, more than 2 hours or more stimulus than average).

I hate this.  I hate it.  How did my life get to this? 

I mean the good news is i can hear my moms voice in my head saying that it doesn’t matter what i wear, or how I look or what I am like when I get there - people just want to see me and they care about me. 

But there’s all this time you see.  This vast expanse of minutes.  All this gap between stuff.

I’m starting to think I have been trying to pack my minutes full of noise so I don’t have to face the hollow echo of nothingness.  That I’m afraid to let go of being a human “doing” and become a human “being”.  I thought I was past that.  But maybe not.  Or maybe it’s continual adjustment that’s needed.  Because spending a week being liad up and unable to do everyday things is one thing, being like that for a couple of months is quite another.  And I’m now facing having been like that consistently for many many months and staring at a future with more of the same to come.

What’s been additionally hard for me to bear is that I’m finding it so difficult to draw at the moment.  My drawings, my art, was adjusted to fot within my limitations as it was.  Now those seemingly have closed in and I don’t have enough control over the pen, or brain to make drawings, or energy to finish it and paint it and care about it.

Maybe I am so busy filling in the quiet spaces (with mainly laptop orientated stuff) I am actually depleting the resources I have and am in a viscous cycle.  Or maybe it’s a side effect of the amatriptyline.  Or maybe I am getting worse. 

Yesterday I posted on my art blog about how I am happy in my core despite CFS/ME.  Whilst I still think that’s true it’s not the most immediate conclusion you would draw if you sat with me this last day and night. 

It started with not being able to get to sleep last night.  A combination of stomach/IBS type problems and what feels like a brick wall between me and sleep.  It’s not that my brain is overactive (which always used to be the reason I couldn’t sleep) or that I’m not tired - because I am in fact exhausted.  It just feels like trying to go to sleep when you’ve only been up a few hours - it’s not the right time.  My theory is that my body clock gets confused by the ME/CFS.

Whatever the reason it’s irritating.  Not the end of the world but frustrating and has a knock on effect.

During the first few attacks of this transient insomnia I removed myself from the bedroom and was sleepy enough after an hour or two to return to bed.  The amount of time it’s taking for that sleepiness to take hold has been getting longer and longer each time.

Last night I sat killing time until just after 5am.  It seemed if I didn’t go back to bed then I wouldn’t be in bed at all that night.  So back to bed and I dropped off as I heard the first birds singing the dawn chorus.  Sigh.

At 9.30am the phone rang (a wrong number) and I managed to dose for just an hour or so more.  I was one very grumpy lady.

The rest of the day so far has seen me staggering between quiet contentment and crazy wailing sadness/frustration.

My dad phoned this morning and spoke to Paul to catch up as I was still flopped in bed.  He’s wanting to fix up to see me (us) before they go on holiday and before my brithday.  Plus it seems ages since I saw them.  So he suggested lunch or a meal sometime next week and he would ring later to speak to me and make arrangements.

I found a sudden jetstream of energy and was able to both wash and dress, and even move downstairs to the lounge before lunch! (Well, just).  I managed to draw - a few nasty messes and one drawing I really rather like.  Which is a joy because I’ve so struggled to draw these last few weeks and have been missing it dreadfully. 

After lunch I found another little jetstream of energy (joy!) where I felt clear and human.  I was pretty certain (with just 4-5 hours sleep) that by late afternoon my battery would start to drain and I’d be in a useless state to talk to my dad.  So, feeling inspired to do something I thought what better way to spend my energy than chatting with my dad. 

I sat holding the phone for about 15 minutes trying to press the dial button.  I couldn’t do it. 

I couldn’t find myself to present to my dad.  I mean I was there, I was physically capable of pressing the button and holding the phone - but it was like Rachel had stepped out for a moment (a long moment). 

I was pretty sure that he would ask me things (how are you and so forth).  I was almost certain he would ask about meeting up and what would suit me best.  I had no idea how to answer.  I was rendered incapable of answering, of figuring out, of thinking things through, of trusting myself to remember what we agreed, of finding words to put in the right order, of not bursting into tears because I didn’t know what to say.

But this is my dad, my great love and my big squeezing hug of love.  It’s not because it was him - it was because of my brain. 

Paul found me holding the phone and I tried to explain why I couldn’t dial.  He had a momentary blast of frustration because it’s easy - just say x, y, z.  You get upset when people don’t get in touch and yet you get upset when they want to speak to you.  Torrential tears and snot follows (mine that is).

Paul apologised - he realised straight away that it isn’t easy.  Nothing is easy.  I’m very ill.  But the tears continued because what he said was what I was thinking.  It’s not difficult Rachel - just do it.  Except, well it’s hard to explain - “there is”, I said “a hole in my brain”.  A void, a rift, a gaping chasm where logic and figuring out and understanding and finding responses and knowing responses is supposed to be.

It’s frightening.  It’s really frightening.  I can’t figure out whether I will be ok to go out for lunch or not on such and such day - but I can figure out the inability to do so scares me witless.  And that exposing the me with that brain hole is frightening.  What if people think I am stupid, or mental, or depressed?  Because I am not any of these.  What if people (my dad) worry about me - which of course they are (he is) bound to do.  I don’t want to show them my exposed major failing of brain and subsequent upset because that’s just a snapshot of my being and I don’t want them (him) to carry that image of me with them when the majority of my time I am ok and content.

So I get more upset because I don’t know that being honest is the right thing to do either.  Paul says now I am working myself into a state and I think (or trust) that he is right.

In the end I get what I need - a clear idea of what to do to deal with the situation.  Because Paul figures it out for me and tells me.  Text dad, tell him I’m still feeling rubbish and will ring tomorrow - and suggest that afternoon tea would be better than lunch or a meal (because my time slot for ok-ness for such things is limited). 

Well, it’s simple isn’t it?  But I would not have been capable of arriving at this conclusion myself.  Me.  The person who is highly skilled at problem solving, figuring things out, be empathetic - knowing the right things to do and the simple solutions to stuff.  Now with a big hole in my brain.

I think the hole is gone again.  Well it is unless I try to make a decision or answer a question.  I can manage questions like “what would you like to drink?” because I can remember the taste of the options I usually go for - though sometimes Paul has to suggest one or two for me to point and say “yer tha’ one”.  But anything out of the ordinary - well it gets tricky some days.  I’ve learnt to be better at saying “I have no idea” and “I am totally not bothered which” about the not so important things - because deciding is so impossible and it’s better to be blunt than get upset or frustrated over not knowing what telly programme I would rather watch.

I’ve blogged before about my cognitive functioning kicking up.  Having had so little sleep I know rationally it’s not a huge shock I’m having the problem again today.  But bloody hell it sucks!

I realise that not many people really know how bad it can get.  How bad any of my CFS/ME symptoms can get.  How bad things can get on a not particularly different sort of day to normal.  Which is why I’m blogging partly - because Paul suggested I could at least show this to my dad and then he would know a bit more. 

I pondered that I don’t want people to see this side of me because

a) I don’t want them worrying and carrying this very dismal picture of my life with them, and

b) because when I speak to them and show them this side of me with this illness it makes me see it from their perspective - my life, my challenges against the back drop of “normal” lives.  It brings into sharp focus how limited and challenging my life is.  It makes me sad for myself. 

I can function quite happily in my bubble and most of the time that’s fine because I’m not able to do much.  The conflict comes in wanting to do scaled down versions of normal things, behaving in normal ways - when I am just not able to.  To want to meet for a quiet pub lunch and a chat, when I know I can’t even wash myself every day.   When the reality of what I am able to do on a normal decent day without any pressure or any change to normal routine is minute compared to what a healthy person could and does do.  Let alone trying to put on a semi normal face and perform as a battling through it, living a full life despite CFS type person.

I know this is a massive rambling blog.  I want to be succinct and I want to show you how positive life can be even with this illness.  But at the same time I am often full of incoherent thoughts, inabilities to process information and have a shitty difficult time - even if I am able to smile through it.

My brain fog was at it’s worst last Christmas at what I consider to be the beginning of this current episode/relapse.  I was still trying to do too much then.  I found myself not being able to remember processes that were automatic to me normally.  I used to make a cup of tea without thinking too much - now I have to focus very hard and have a (large print) tick list in my mind.  I even have to say the steps out loud to get through it sometimes - cup, kettle on, teabag (in the tin - into the cup), etc.  Back then I couldn’t remember that after I’d been for a wee I needed to pull my pants up before my trousers and was always trying to pull trousers up first.  I found myself standing at the basin for a wash forgetting what to do next.  I had to write lists of every single thing I needed to do that day just to function. 

Sometimes, even now, I catch myself knowing I am now going to brush my teeth and having the toothbrush in my hand but momentarily forgetting what and where that stuff is that goes on it … paste … oh yes it’s in my hand and it’s … toothpaste!  Yes, that’s it.

I have been giving thought recently to why I can blog and email but struggle with the phone and face to face.  Is it really a cognitive problem or is it fear? 

Well it’s both.  Often it’s the cognitive problem - it’s the listening, then comprehension, then reacting, then reading my reaction, then censoring if appropriate, then responding.  It’s a complex process and my brain stumbles sometimes.  And the times when it seems to working fine - well then it’s fear, but it’s fear of this stumbling starting up mid conversation.  Once it starts the stress comes creeping in and that fuels the problems.  With email and comments and so forth - I can respond in my own time, slowly, deliberately - I can read it back and I can use the delete key.

So I’m not hiding.  I’m coping as best as I can.  The choice for me isn’t human contact or internet contact.  For the majority of my time it is a choice between internet contact or no contact.

I have heard myself say many times in social and formal situations - “Erm, no.  My brain has gone.”  I don’t think anyone I say it to (except maybe Paul) realises what that really means.  That there’s a big fat blank empty space in my brain.  It’s not just losing a train of thought - it’s losing everything, even if it’s just for a few moments (which usually it is thank god).

I’m not sure how to end this writing.  I can say more, I wish I had said less.  But I know I’m tired now and I feel sure I have covered the big points - I hope you have managed to unpick some of it and forgive the sloppiness. 

I know it’s not the clearest writing ever - but you see I’m having some problems with my brain today.

I know I’m not alone with this one. 

Do you ever get times when you feel a different kind of ill, a different kind of pain, a different sort of sensation? And it’s so difficult to say whether it’s:

• The chronic illness already known but a new symptom, or a more severe episode, or a sign of improvement even - a fighting off the mystery cause of your illness
• An infection, a cold, a virus like everyone else gets and you just got unlucky to have it on top of everything else
• A side effect from a new drug, a new combination of medication and over the counter medicine or new vitamin, or new regime of fighting for health having a weird side effect.  Or even a drug you’ve been taking for ages that is now having a side effect through prolonged use.
• Something new.  Something different from everything else.  Something your doctor should know about.

Sigh.

Friendly supportive people say that you should always get any new symptom checked out - don’t just blame every new ailment of your chronic illness.  That’s how nasty things take a hold and get more serious than they need to.

Which is all well and good if you can just ring your doctors and roll up for an appointment, like easy right? 

If you can get to see a doctor who is not only going to take this ailment seriously but also consider it within the context of your other health problems.  Who is going to patiently listen while you explain all the variables that might be causing it.  And who is not going to roll their eyes, glaze over and see you as a repeat offender, always finding something wrong.

So I’m holding out with my odd chest/breathing/throat thing that seems to be coming and going, but without a recognisable pattern.  Because it’s odd and because my friendly GP is on holiday.  Because I’ve started new drugs.  Because I’m also having an odd sleeping pattern and loss of appetite and bloating/nauseau when I do eat - and I feel like I have been here before.  And because I’m tired and I want an easy life - even if that means the occasional worry about why my chest feels weird.

So I just smile, keep my fluids up, try not to breath too deeply while the wheeze is bad and focus on other things.