Here is my story of Lyme Disease so far…
I will post a list of some of my symptoms at the bottom of this 🙂
Back in 2012 I guess you would say I was just feeling off, I visited my GP a few times that week thinking I could have had something serious as I was really tired, thirsty and just not feeling good at all… They told me it was just a virus or I was run down or something so I kept working and just ignored how I felt….. That was until one night I got tingling in my legs, although honestly I ignored that too and thought I had just sat funny and would wake up and be gone so I set my alarm for work and went to sleep. The next morning I woke up and I soon realised I couldn’t feel my feet, my feet were on an extension cord that was on the floor and I looked down and couldn’t feel it under my feet. I rang my GP and they got me in pretty much straight away, I explained what had been happnening and how I could now no longer feel my feet or even walk! I was sent straight up to hospital with a letter from the doctor asking for more tests! I guess that’s where my long journey really started.
I was admitted to hospital and spent about a week there, I couldn’t walk, feel my legs and I was so exhausted and stressed. I had a team of doctors in hospital who everyday tried to push me to walk a little further, it killed me but all I wanted to do was go home so everyday i tried to just make it a little further so I could go home and have a good nights rest! By about the 5th or 6th day I finally struggled further enough that they said I could go home. I underwent so many tests while in there, MRI, Bloods, you name it I had it, I even had to go back in after I had been sent home for a lumber puncture which would test me for MS. This test to date is the most painful and scary thing I have endured possibly test wise!! Although it was great news I didn’t have MS it really didn’t give me an answer, I was still undiagnosed and unable to walk.. How could i have just had my whole life ripped out from under me? I was 20, I was healthy and fit and loved to go out and spend time with my friends and go out drinking.. I had just started a new relationship and this is how we got to welcome it! From then on my life changed i guess, I couldn’t go out clubbing (I even hired crutches one night so I could celebrate my good friends 18th birthday), I couldn’t work, I couldn’t go and do fun things with my boyfriend like nice long walks and adventures.. Slowly the less I could do the more I found I got invited less and less to things… My friends were amazing and would come and hang out with me and bring as much to me as they could or invite me to house parties so I could go but it did take a toll, it wasn’t fair on them to have a sick friend who spent 90% of her time in bed! Work became a huge stress, my bosses would ring me and tell me they needed me back at work, I would get off the phone and just cry and cry, I couldn’t stand for 8 hours, I couldn’t even walk to the fridge without struggling! My dad needed up having to get involved to tell them I would be back at work when I was healthy enough… I get they were running a business but they didn’t understand that I was unable and incapable of even having a shower!
Then I guess things got worse for me.. I had my freedom taken away, my license. My GP thought that seeing as I couldn’t feel my leg it would be the best thing. I was so lucky I have such an amazing and supportive boyfriend and family, my nan would come in and take me shopping and to doctors appointments once a week and just get me out of the house, we even went on little road trips. My mum would come and pick me up and take me to appointments if my nan or boyfriend couldn’t and just take me for a drive. It was nice to get out of the house i guess as it gets pretty depressing when you can’t do anything, and depressed I soon became. I quit my job and became focused and consumed by it all, I spent days on end in bed, I spent hours and hours googling searching for an answer, we spent so much time and money travelling seeing neurologists and specialists.. After being told so many times we can’t find anything, we don’t know, is it in your head, just accept its a mental thing i became even more disheartened and depressed.. All these specialists and tests and no answers, nothing.. How could it be, how could they not know they are doctors they train in this they are suppose to have all the answers. As well as specialists and doctors I had seen naturopaths, physios and other natural/alternative options! Physio was the thing that helped the most, I had an aiming physic who helped me build some strength back up, I still couldn’t do much but I could do more!
I guess if we fast forward a few years till last year rather than me rambling on about more pointless doctors visits and more depression and just emptiness I can give you some more hopeful news… After moving states and more physio type stuff, I done more research as had my family and we decided it would be worth me being tested for Lyme Disease. After researching and finally finding a doctor we went and seen him and he said that it sounded as though thats what it was, some very expensive blood tests later, a few trips to Sydney and in April this year I finally had my diagnosis! I guess now its all still so new and unknown to me, it freaks me out, I don’t know what to expect now I have started treatment, I don’t know how long until I will be better… I do know that I try to not let this rule my life now and that I want to beat this and be able to have the family I dream of, the house I dream of and a career! Treatment is only new for me, I have started on antibiotic treatment and will need more antibiotics and other things in the future and will post about how my treatment is going as I get more into it!
Some symptoms I have (everyone is different but these are mine):
- Numbness/weakness in left leg and hand occasionally
- Memory problems (short term more so)
- Aching and spasms in left leg
- Sleep Disturbances, not able to fall asleep
- Insane fatigue, no amount of sleep is ever enough
- Feeling of something under my skin
Note: I don’t recall being bitten by a tick or having the bulls eye rash they say you get so you can still have it! Please don’t give up on fighting to find out whats wrong and getting your life back!