Tuesday, 10 January 2017

How are you?

Whenever anyone utters those three little words "How are you?" what do we reply?  "I'm fine!" of course!   Unless it is my daughters or my husband and then I say "I am 'as usual'" and they know that means I am no better and no worse.  But we still say 'fine'.  Why?  Because it saves us a lot of disinterested responses and also saves our enquirer from having to change the subject!   Unless a person truly cares, unless a person is truly interested, seriously, they do not want to really know! ;)  But, because I feel like it and because I have nothing else to do, I am going to tell you.   You may leave this page now if you are not really interested, I'll let you. ;)

I am knackered.  I had 9 hours sleep yet I woke up feeling like I had none at all.  In fact, I could not even raise my head from the pillow for a good 20 minutes upon waking and all I wanted to do was go back to sleep.  Often though, I do not sleep at all until say, 9am the next day so imagine how I feel then?

I ache.  Every bone, joint and muscle aches and burns.  A slow, dull ache that never leaves me in spite of taking codeine and paracetamol at least twice a day.  I hide my pain.  Nobody wants to see that do they?

I sit here with the curtains closed most of the day.  I cannot stand bright light and our living room is south facing.  Bright light actually hurts my eyes so much now that it makes my teeth ache?  I wear sunglasses in the day time, even through winter, unless it is very dull and cloudy.

My hearing is hypersensitive.  I cannot be in busy public places because of it.  That background hum of many people talking that you are so used to makes me want to run away (if I could) and induces such an anxiety inside me that I can almost have a panic attack!   I cannot abide the sudden loud squeals of children or sudden loud laughing from adults.  Even something like the TV where presenters are rattling on and on and then the blurb of adverts can also make me feel bad.  I carry around small sets of musicians ear plugs to drown out back ground noise.

Skin crawling, sudden stabbing sensations etc.  I take a pill three times a day for these and luckily it works for the most part - but not always.

Dizzyness.  This one sneaks up on me and it does not care where I am either!   The ground 'moves' and I sway.   I might bang into things or stumble.   I am usually pretty good at hiding it though as I fear people might think I am drunk.

Nausea.  Luckily not one of my worst symptoms but again something that can sneak up on me.  As I have a bit of a phobia about being sick, this is not a symptom I actually enjoy to say the least!

Depression.  This laps at my heels like an over attentive puppy.  It is partly frustration because I so want to do something that is now beyond my capabilities and partly despair because this illness seems to be never ending, with no respite.  But, I suck it up and I carry on.

Headaches.  These can be as severe as a sudden vice like grip on the top of my skull or just an annoying, persistent mild ache.  You are unlikely to notice as I hide them a lot. 

Cognitive impairment.  I forget a lot.  An awful lot!   I cannot concentrate.  I cannot take in new info.  I can however tell you what I learned even 30 years ago but tell you what I did yesterday?  I might have to consult my husband about that!

So yes, this is how I feel most days, sometimes worse, sometimes not quite so bad but it is usually pretty consistent.   This is why I cannot work and socialise as I used to.

With the advent of social media, nobody bothers to come round to see how a person is anymore much less phone.  Sad fact.  If I deleted Facebook, I would be almost totally lonely.  Yet because I do use Facebook, I feel isolated from society and 'left behind'.  What a quandary!

Nobody likes a moaner huh? Unless it is a common cold of course and then everyone weighs in with the sympathy! :D  But that is gone within a few days.....  Aww!   I actually feel like I am getting flu most days, or suffering from the remains of a hangover?   I have felt like that for over 8 & 1/2 years now and counting!

But, I am fine!

Thursday, 5 January 2017

New Year musings

I realised that it has been 2 & 1/2 years since my last blog post and so, here I am again.  Not much has changed, not a thing, a big, fat, nothing!   Well okay I lie!  Physically I have gone downhill.  I cannot walk far unaided any more without ending up in a lot of pain.  Even with aids like a walking stick or wheeled walker, I cannot be upright for too long.   Even a short stint round the local supermarket leaning on a trolley leaves me mentally and physically exhausted.  I actually do not go to such places alone now as I fear I may have a funny turn.  I also feel very vulnerable.  My visitor list to my home gets shorter by the year and instead, I keep up with the lives of friends past and present via Facebook instead.  I also keep up to date with goings on in the world generally, especially where Lyme Disease is concerned.  Theer are a couple of friends I have not seen for years who do not live that far away!  But they are 'busy' and in good health so......

Do I have any hope of a cure coming my way?  To be perfectly honest, I am a realist and though this may annoy the positive thinkers like hell, no.  I do not hold out much hope at all for a cure because a) I am still diagnosed with CFS by the NHS anyway and b) even if they do find a cure, by the time the UK gets with it, it could be too late for the great misdiagnosed like me! 

But, I carry on and I do the best that I can.  I refuse point blank to make myself more miserable by chasing rainbows, I mean treatments, via special diets, cutting out this and that and other assorted faddy tricks!  My spirochetes do not care about all that!  I also refuse to spend thousands of pounds taking huge journeys that can risk me ending up worse than I am, chasing after expensive treatments abroad!  Sorry if that is your thing but it isn't mine, end of!  Pushing such therapies, diets and protocols down my throat will result in me spitting them back out at you!

I think this illness has made me more stubborn but also more conscious and caring about the suffering of other people?  I know damn well most people won't care about me, won't care that I dropped right off the dog training scene and declined socially because of this illness of mine.  Only a few actually show any concern for me and that's fine but I won't be the same about other people.  I am now one hell of an armchair warrior.  I share articles, sign petitions and also write to my MP, all these about many different subjects, not just about Lyme.  I tend to look at what I have got and what i can still do.  But even now and then, a depression will grab me, usually of the 24 hour kind and I will have my own pity day, cry, talk about it to my husband and then, I pick myself right back up again and I carry on.  

I have been abandoned by the medical profession in this country, to a diagnosis of Chronic Fatigue Syndrome.   That means no care as such, apart from renewing prescriptions every few weeks for an increasing variety of the more serious symptoms.     Lyme is on the increase but the media are downplaying it and the NHS pretends it is not really there.  Our politicians don't care either, well maybe some do individually but the majority won't listen to them.  This reminds me of when HIV/Aids became an issue back in the 80s, with the lies, cover ups and indifference such people showed until it reached a point where they could no longer ignore it!

I guess I will be writing more posts as time goes on but I doubt anything is going to have changed much when I next do it.   In the meantime, look after yourselves and your loved ones if you go walking in the great outdoors and even in your own gardens!   Learn what Lyme is.  Learn how to take ticks off correctly and get ready for a battle if you or loved ones are unlucky enough to be infected!   Oh yes, you should already know how to do all this, all those articles I shared?

That you probably skimmed past as it does not apply to you..... yet!