Friday, 1 August 2014

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.


Saturday, 12 July 2014

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?!