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!

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!

But everyone gets..........

Many sufferers of Lyme Disease and other illnesses that affect people in similar ways will nod their heads all the way through what I am about to put there.  We have all heard it and experienced it, from friends, relatives and strangers alike.  It never gets any easier to bear either!

"Oh but I get tired too!"  "Everyone gets tired!"  - True.  Of course 'everyone' gets tired. But when you get tired, you go to sleep and wake up refreshed.  I don't!  You can sleep 7 or 8 hours and wake up and go to work.  I can't.  I still feel like I could sleep another 8 hours!  

"Ohh I get aches and pains - it is part of getting older, didn't you know?" - When you ache, you can sit down and rest for a while and it will go away.  I sit down and I still ache.  I ache after wandering out to get the post.  I ache after standing a little while, or bending down to retrieve something from the floor.  Or standing in the bathroom to clean my teeth.   Or raising my arms to brush my hair or tie my hair up.  It does not go away after rest.  I wake up aching!  I get shooting pains that migrate around my body, often for no reason at all.  I do not complain as I am so used to it now.

"The sun hurts my eyes too!  Oh and I hate loud noises." - Well yes, that's why there is a good market for sunglasses & earplugs!   But when I am affected by the sun, it can even be behind the clouds and it gives me a headache!  I am bothered by normal daylight so unless it is very cloudy or dark outside, you will see me wearing sunglasses when out!  Everyday noises like the burble of several people talking at once, children shouting and crying, TV commentators (especially those with the higher, nasal voices!) strimmers, mowers, clippers etc can all make ill people like me feel anxious, irritated or even tearful.   We do not just 'not like' noise, we absolutely dread it!

"Everyone gets depressed sometimes!" -  Very true!  But do you get depressed because you have lost friends, even family who won't come to see you anymore because you are 'boring' and cannot jump to it and go out, do this, do that with them?  Do you get depressed because you can no longer pursue the sports and hobbies you once loved?   Or because you had to give up working?  Or because you have no been outside for weeks because there has been nobody available to go with you?  Some people even find their marriages flounder because of this type of illness because after all, not everybody is cut out to be a carer and they want to have a normal life, not a restricted one.

"Oh I forget stuff all the time too!" - Yes!  It is normal to!  What is not normal is forgetting what somebody told you minutes after they said it.  Not being able to recall what you did yesterday never mind last week!  Reading the same passage in a book over and over because you forget where you got to!  Wondering where somebody has gone, even getting up to search for them although they told you several times where they were going!  Crying because you feel so frustrated at forgetting how to play a board game that you have played lots of times before.  Ordering the same book or DVD twice because you forgot you already had it.   Watching a film like it is the first time you have seen it yet you are assured that you only watched it a few months ago.   I could go on... but that could get depressing!

"You would feel better if you exercised more/thought positively/ate better"  - Now, where did you get your medical degree huh?  I would LOVE to exercise more, but to do so costs energy and a major part of my illness is pitifully poor energy levels.  People like me run on an almost flat battery and we do not recharge simply by resting like you do.  15 minutes exertion can mean 3 hours sleep afterwards.  An afternoon out, even using a wheelchair or scooter can lay us up for three days afterwards from the visual and aural stimulation we have to endure.  As for thinking positively, one thing being ill like this teaches you is to be realistic and not to waste energy chasing after expensive, fake 'supposed' cures etc.  Now if that is negative thinking then here, you have it.  Go do it and see how far you get (and how much out of pocket too)!  I will stick with being realistic thank you very much!  As for eating better, if you had my digestive problems, you would soon realise that you have no other choice but to eat a decent diet as I have done for years now.

"But you look so well!"  - Why thank you!  You don't see me the rest of the time though do you?  Oh yes, I can come out and I make sure I look as good as I can when I do.  But you won't see what happens when I get home and have to go to bed for several hours because I am exhausted.  Not just a 'bit tired' but bone crushingly, mind numbingly exhausted, slurring my words and moaning as I get into bed because I ache so much.  Many illnesses and disabilities are not visible anyway.

I try not to talk about my illness too much to people apart from my husband anyway, because someone inevitably comes out with one of the above remarks and it gets a bit tedious after a while.  I know they mean well and are not trying to patronise me or belittle my illness but really, their version of tired, achey etc is 'normal' and is sorted out by proper rest- mine is not.  

I really do wish that thinking positively would cure me!  If only it were that simple!   However, the borrelia spirochetes that the tick so kindly injected into my body during its bite (sarcasm intended!) giving me Lyme Disease as well as a myriad of co-infections, do not care how positively I think as they burrow their way into my tissues, bones, nerves, sinews and vital organs. 

Please, please be tick aware and do not end up like me.  Don't ignore a tick bite and insist on prompt and proper treatment if you are.  Do not take it for granted that the NHS will help - many of them do not even know about it and those who do have their hands tied and their minds closed by out of touch guidelines originating from the USA, bound up in politics and red tape.  It is actually, a sobering thought that the veterinary profession is actually much more knowledgable about it and that your pet is likely to receive thorough treatment until it is cured if it is affected by Lyme Disease!  Humans just get told they have CFS (Chronic Fatigue Syndrome) and are cast aside to cope alone instead!   
A good site for more information is Lyme Disease Action if you wish to know more.





  

Wow!  Realised it had been a year since my last update!  So, without further ado <cue drumroll> here it is!

Well I tried.   But in about Feb/March I finally threw in the towel on the private treatment.  I was, in actual fact, starting to feel worse and also getting skin problems etc through the use of antibiotics for such a long time!  Thankfully those resolved once I stopped taking them.   Do I feel any better?  No.  Do I feel worse?  Well yes and no.  It is probably just a natural progression of the disease anyway but I have slowed down even more and had to move onto strong painkillers, Tramadol.  What?  OMG!  I hear you cry!  They are addictive.  Yes, yes, I knows that but....... do remember that one of my symptoms is a poor memory?  I am meant to take 6 - 8 of these per day in 3 - 4 separate doses?  I am lucky if I remember to take one dose and only take the second one because pain reminds me to!   So errmmm yeah.... I would not even make a good addict would I huh?

I am instead concentrating on making life as comfy as possible, doing what I can to feel as good as I can.   I appreciate the simple pleasures in life now.  To you, that might be smoking, going out for the occasional meal, taking regular holidays to nice places and drinking socially etc.  For me, my simple pleasures are things like watching the birds feeding, raising and releasing butterflies and keeping up with friends and happenings via the internet.  I am lucky in that I have a nice Macbook Pro laptop now so I can sit in a comfortable chair which reclines if I need it to, with the Mac on a table and all my stuff to hand like a drink (water or pop!) and stuff like moisturiser cream a pleasant spritz spray to freshen up with.   Last year we had a walk in shower put in instead of the bath as I was having difficulty getting in and out, so that made life easier.  Your favourite gadget may be an iPhone or  similar - mine is a machine to rest my feet on that sends electrical pulses through my feet to shift the fluid build up! :-D

I have actually come to terms with the fact now that a) I may never be diagnosed properly and b) I may never be cured.  A cure is very hard to find - some people may feel as though they have recovered but many find they relapse again later as unless every damn, sodding borrellia spirochete is ousted from your body, it WILL return!   This is a very insidious organism that invades every system of the body.  It bores into muscles, organs, bones etc and is known to retreat into cyst form to 'hide' when you try to treat it!   Believe me, if you got this, you would soon realise why you have to become your own expert on it because the medical profession just are not paying enough attention!  The info and research is out there, but it is being hidden and ignored.  Nobody wants to know and those who do, end up being hounded by the GMC or CDC (US) until they either quit or lose their license to practice!  I kid you not!  Conspiracy theory?  Yessums!  In spades!  Go look it up sometime.

According to the ill informed media and even less well informed medical body in America, IDSA, none of whose members are experienced in Lyme Disease though they think they are, this disease is 'hard to catch, easy to cure.'   I assure you that is the wrong way round!   Easy to catch and hard to cure is more like it as every well researched scientist who has studied it can tell you!

So no world.  I am not leaving you any time soon.  I am here to stay though it is a sobering thought that the second most common reason for a Lyme Disease sufferer (second to associated heart problems as the main reason) to meet an early death is suicide, usually through utter despair at lack of a cure, tired of the pain and limitations and their families and friends have either disappeared or given up on them.  I am very lucky to have a few supportive family members and loyal friends so no. :P  Shan't be going anywhere, at least not by my own hand!   Besides, I would miss too much!

As for quack cures.  Keep them!   I do not fall for flower remedies, herbal wonders or magical talking therapies.  Neither do my guys, the Lyme Disease bacteria.    They thumb their noses at such things!

So, there you go.  Another update!  Aren't you the lucky ones?!

Progress so far, such as it is

Have been on antibiotics now for nearly six months.  So, I hear the question being asked....Am I better now?   Depends what you term as 'better'.  Better in that because of the antibiotic (not your average run of the mill antibiotic either!) combined with an anti-rheumatic drug, I ache less.  Well, that's my 'better' if you like.
Am I cured?  No.  This is not flu, it's not a chest infection.  It is an invasive disease channeled by microbes that work their way into all your blood cells, vital organs, nerves, muscles, bones etc where it breeds and hides, often disguising itself against antibiotics in such a way that has even aroused the curiousity of germ warfare scientists around the world!  Regardless of what misinformed, poorly researched UK doctors try to claim, it won't be cured by a few weeks of antibiotics.   Those left still suffering from symptoms after being treated by the NHS (lucky them to even have it recognised!) are then told they have CFS, that convenient dustbin diagnosis so often used to end further investigation into why you really are ill!
Each month I also have a session on the Rife machine, a controversial treatment that is even outlawed in some states of America but hey!  What have I got to lose?  Besides, some people have had real success with it and as long as it does not harm me, well, gotta try!  Zapping the little microbes with electrical waves makes more sense to me than some of the alternative therapies people have suggested - not that I am knocking alternative medicine!  It has it's place but where such a stubborn, physical infection is concerned, I don't want to waste precious time on trying this, that and the other because someones uncles, best friends daughter found it worked etc.
In the meantime, I battle on, well aware that I am in it for the long haul, that I may never get 'cured' (Oh come on!  I am a realist!) but hoping all the time for some more improvement.

I am now on an antibiotic and an anti-rheumatic prescribed by my private doctor and have been on them for 3 weeks now.  I take the antibiotic for a week then stop it for a week then resume it for a week and take the anti-rheumatic every day.   One good thing I have noticed is that when I am taking the antibiotics as well as the anti-rheumatic, the constant pain I normally have in my bones completely disappears, which is rather nice as its a twisting, burning pain that is normally always with me.  But, when I rest from the antibiotics for a week, the pain soon comes back.  So, I deduce that combined, the two medications do  actually reduce my pain considerably which is a small improvement!  Does not mean I am getting cured though, it just means I get some respite from one of my many symptoms!  To me, that's a good thing! :) Ok so my energy level is still shite but, because I am not in pain so much, I feel 'better' than I have done for many months!
My heartfelt thanks to the NHS - NOT!  You lot have not helped me at all - you do not even acknowledge what it is I am really suffering from! <shakes head>  It is about time you guys and gals wised up!  People are suffering!

5 years on

I have now been ill for five years.  Swap you for your common colds, flus and tummy bugs any day?  There are over 100 studies showing that the borrellia spirochetes (LD bacteria) persist despite antibiotic treatment unless the disease is detected and treated very early.  Most of us remain misdiagnosed for many years so are being left to rot.  Alternative therapies may make us feel 'nice' but they are very unlikely to succeed against such an invasive, persistent infection. Likewise the many quack 'treatments' being touted by lay people and dubiously qualified 'health professionals' who know how to set up flashy websites and belong to fancifully named organisations often set up by themselves or their partners......
I am so used to this now that I accept this is how I am.  I persist with private treatment by antibiotics and Rife Machine because well, there is nothing else and I have to have 'hope'.  I have not given up, just come to terms with it.  My only real fear is that one day I could end up alone to struggle with this - but I am not going to waste precious energy worrying about 'what ifs'.  I just get on with it, such is life!  You get to realise what is really important, not the latest gadgets, not fancy holidays or the highest fashions.  But love, friendship, patience, inner happiness, stuff like that.