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.