Oh so you're just like, tired all the time?

No. Just no. For six years now that has been the question asked, over and over again. I know that it isn't the persons fault they just don't know enough to understand... but that doesn't mean I haven't wanted to hit some people out of frustration. So I just wanted to give a general over view into the symptoms of a typical Lyme disease/ originally thought to be CFS and Fybromyalga/ anxiety prone person.  This is by no means what every person with these diseases or syndromes goes through it is just a simple explanation of some  of the symptoms experienced by me personally and possibly others similar to me.
So pretty much I am tierd all of the time, but it isn't normal tired, it's a tired that can never be fixed by a good nights sleep (what even is that?) or by a quick nap. Have you ever been so over tired that you couldn't actually get to sleep easily? It feels like that but when you do actually sleep you wake up feeling worse than when you went to bed the night before. It is a constant cycle each and every day, and this is usually accompanied by restless and broken sleep for most CFS and Lyme sufferers.
Along with the tiredness there is pain. The type of pain and severity of pain varies dramatically from person to person but pain is something that is invisible in itself which in turn makes it pretty hard to generalise.
Sooo.. with that in mind this is only my own personal account of pain that I feel and live with every day. My pain is chronic, I've had headaches every day for 6 years, they vary from day to day, from small headaches that are no big deal, to blinding migraines that leave me in bed for a day with every blind in the house closed and my family speaking in whispers (those poor people).
I have constant muscle aches that I can only discribe as feeling like my muscles are being ripped apart slowly under my skin. It hurts to walk, sit, stand and lie down. You get used to it after a while but there are peaks and troughs and sometimes it is unbearable. And although I try, usually there are no amount of pain killers that will help. Joint pain is also prominent and is said to be very similar to the pain caused by arthritis.
I generally feel weak. I can't really think of any other way to describe it. My muscles over the years have deconditioned and my body can't handle anything strenuous, or not strenuous actually. Walking from my bedroom to the loungeroom is difficult and if I go out anywhere (which doesn't happen often) I have to be in a wheelchair.
Although all of these symptoms are pretty horrible 'brain fog' is probably the one I hate the most. I've always been a pretty academic person and learning and pushing myself to learn new things and do my best have always been things I've enjoyed. My brain however seemed to be one of Lyme disease's first points of attack. Pretty much every day I struggle with what can only be described as 'brain fog', it's pretty much like someone has come along, put a blanket over my brain and told it to be quiet and go to sleep. Which is a giant pain in the butt for someone trying their hardest to complete VCE. Most of the time I find it difficult to think of the words I'm trying to communicate with, I have no idea how many times over the years I've said 'Um what's that word?' This is probably the symptom that is hardest to describe, but pretty much at around 4 in the afternoon my brain refuses to work. I can no longer understand what it is I was trying to read, or I find it very difficult to express to mum or dad how I'm feeling or simply have a conversation because words are difficult to come by. Some days I wake up like this and my parents have to read out my school work to me over and over again until I understand or they have to read it themselves and then tell me in a way that is easier for me to understand. It's annoying but slowly I get there. Most days... which leads me to my final point.
The isolating effects of all of these symptoms are horrendous. My dad very creatively calls it 'medically induced solitary confinement'. Because I'm no longer able to actually attend school the people I see on a regular basis are my parents, my best friend and doctors. I know it isn't an actual symptom of Lyme disease but it is a result of the others and it is not a fun time. It's lonely and sometimes I just have to allow myself to hate what Lyme disease has done to me and hate the way I have to live because of it. But then I move on and pick up my good attitude that I throw on the ground like a three year old having a tantrum, stuff happens. 

Isolation and Ignorance.

So these are two of my least favourite words and unfortunately they are very closely related (for me anyway.. anyone else?). There was an article in the paper today on Lyme and how the Australian government doesn't recognise its existence in Australia. Obviously I know it exists in Australia.... where else would I have got it considering I haven't been overseas? I've walked into doctors offices and had them look at my blood test results and tell me it isn't true, I'm either lying or it's all in my head. Ouch. The ignorance of the Australian health department and doctors hurts, yes, but to me it doesn't compare to the isolation felt due to the absolute isolating nature of Lyme disease.

As it is an illness that isn’t very well known it’s extremely hard for people to understand what it’s like to live with every day. People usually only see you when you’re having an okay day and have possibly put on some make-up or simply people seeing you smile may lead them to think everything is ok. I am by no means blaming anyone for my feelings of isolation, I’m simply stating how I feel. The actual symptoms of Lyme are isolating in themselves, I know personally I’m usually unable to go anywhere and if I do I’m in a wheelchair. For an 18 year old (and I’m sure for all ages) being house bound drives you absolutely crazy. One frustrating thing for me is coming to an age where I have my licence and I’m legally and adult, and yet most of the time I can’t drive at all and I definitely don’t feel like an adult when I have to rely on my parents to pretty much do everything for me, cook, drive, help with school work, sometimes even having to help me walk from the lounge room to my room.

I’ve found myself becoming very angry with nobody in particular, mostly just the situation I find myself in, (being totally isolated, loosing friends, being sick and having a really annoying health department) but then I think... why be angry? Where is that going to get me? Wouldn’t I be much better off possibly connecting with a group of people who know what I’m going through such as Lyme or CFS support sites and what not? (this is a bit of a touchy subject with me but I’m learning). Also I may have lost friends but I still have a select few that are totally willing to help me out when I’m feeling completely cut off from the world. And I have an amazing family who love and support me in anything. So what right do I have to not ask for help? Especially when they offer.

Don’t get me wrong, if you have feelings whether it be anger, sadness, frustration etc. I’m absolutely all for letting yourself feel them and then move on. But I’ve decided to reach out to those around me and ask for help (something my A type personality has never been good at) and I think it’s going to be really good for me.

But I realise not everyone has been equally blessed with support around them, and if you’re reading this and feel that way there are others in the same boat, and being one of them I know I’m willing to help so I’m sure others will be too. (that sounded totally lame but I hope you get my gist)

So that’s my half complaining/ half trying to be supportive rant over.