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| A classic bulls eye rash, which signifies Lyme Disease. Mine was on my bum so I don't have a photo to show you! |
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Disclaimer: I am not a medical professional however these posts are based on my personal experience/knowledge as I have had to become my own medical advocate as it is so, so difficult to get help for this illness.
As some of you know, I started this blog as a distraction from my illness but I've reached a point where I want to talk about it. I've started to received message and emails (not in a typical 'sooooo many of you have been asking') enquiring as to how I cope with it, what I've tried etc. I also want to raise some awareness as it is a very debilitating, yet invisible, illness. Prepare yourself for around five days of posts on Lyme Disease and invisible illness, in general, and then we'll get back to beauty but if you normally come here for beauty reviews, I would still really appreciate it if you read, possibly learn and even share these posts, as they are very important to me. Also, there are plenty of people out there suffering a range of symptoms but not knowing the actual cause and it may just be Lyme Disease.
Many people with Lyme Disease don't actually remember being bitten and don't actually develop the classic bulls eye rash - I did, but I didn't realise its significance! In hindsight, on that holiday there were so many alarm bells (even apart from the rash) - I was so fatigued that I just wanted to sleep all of the time and kept saying '5 more minutes' in the mornings and would fall back into a deep sleep, whereas I am normally a morning person who likes to get up and make the most of the day. At one point, we thought my drink had been spiked because I was so drowsy and had practically no control over what I was saying and doing - everything was hazy and this was just my second drink. I can remember excusing my exhaustion - there was always reasons to explain tiredness (too many late nights, working overtime, not eating healthily enough, not getting enough exercise) but none that would adequately explain why I suddenly felt like I had been hit by a bus. Fatigue are tiredness are two entirely different things. In any case, I just 'got on with it' - this was always my attitude to any adversity - just get on with it. It was only six months later when I finally, completely collapsed that I realised that I could no longer just 'get on with it'.
So, what are the symptoms of Lyme? Well, actually I was diagnosed with M.E. for 5 years before receiving a correct diagnosis of Lyme. For me, I always felt that the diagnosis of M.E. was just an umbrella term for a number of issues and I was determined to get to the root cause of what had caused it. I couldn't accept that I went from a person living a full life (working, socialising, giving private tuition, seeing family etc etc) to one who couldn't leave the house on her own and basically lived between the bed and the couch. Symptoms will vary from person to person but for me, my main ones were (and mainly, still are):
Fatigue - I am talking exhaustion to the point where you feel like you could vomit. Planning your week around the day you wash your hair (and that's on a good week) to having to be bathed and spoon fed at times. Having to ask your husband to turn you over in the bed because you physically can't do it (and then having to ask him to fix your wedgie as a result of being turned because you can't do that either - at least it will raise a laugh and a sense of humour is so, so important when you're very ill).
Very low immune function - if you sneeze near me, chances are I will get pneumonia and I'm not even joking! When I first became ill, I was with my GP on a weekly basis with sinusitis, tonsillitis, gastric bugs, an enlarged spleen, chest infections...... the list goes on. I just couldn't catch a break and, to be honest, to a large extent, still can't.
Fainting - I fainted pretty much daily and sometimes, several times daily.
Huge sleep problems - I could sleep for 12/14 hours straight and still wake feeling like I hadn't slept at all. It would vary from this too insomnia or broken sleep but the one thing for sure is that I never felt refreshed after sleep, no matter how long it lasted.
Pain - muscle, joint and bone pain.
Confusion - I couldn't concentrate on anything and words would appear jumbled when trying to read.
Enlarged lymph nodes - I feel like I haven't seen my neck since 2000! But the lymph nodes in my arm pits and groin go through phases of pain and enlargement too.
Allergies - suddenly I became allergic or sensitive to so many ingredients/products and even light, at times.
Digestive issues - this could get very TMI so I won't go there at the moment but, thankfully, this is one issue that has vastly improved.
These are just some of the symptoms but they are the main ones that I experience and still do. Fatigue has ALWAYS been top of that list and it affects everything.
When you first become ill, it can be quite scary, confusing and lonely - especially when nobody has any real answers or solutions. You're trying to figure out if you let your body down or if your body let you down - maybe it's both, maybe it's neither. Added to this, the fact that some people don't 'get' it or understand it, because they don't see a broken leg/arm, it can be very isolating. My advice is to eliminate those people - you have enough to deal with as it is without having to justify how you're feeling.
The cause of all of these symptoms? An insect bite! It used to be thought that only ticks could cause Lyme but there are other hosts too. In basic terms, a tick will attach itself to your skin, suck in your blood, infect it with Lyme and the regurgitate it back into your system. At this stage, it is free to run riot within your system and the spirochetes multiply every 4 weeks. In my case, it was 5 years before I was diagnosed with Lyme so you can imagine the damage that was done. I had seen so many 'ologists' here but it was only when I went to Germany that Lyme was ever mentioned to me and all of the dots were connected. I was given a diagnosis of Chronic Lyme and finally rejoiced as I knew I had found the root cause of my issues - little did I know my battle was only beginning....
Lyme Disease is more commonly heard of nowadays, thanks to celebs who have been affected talking about it but also, there are a lot more campaigns to raise awareness. When I was diagnosed, I was part of an online M.E. forum and was the first to share my story and others then went on to be tested and find that they too were suffering from it. All had previously been diagnosed with M.E., which is a diagnosis of exclusion (as in, we can't find anything specific wrong with you so we'll label you with M.E.). The problem with Lyme Disease testing in the U.K and Ireland is that it is very easy to get a false negative as the tests are outdated and not very sensitive so if you have all of the symptoms above (and possibly more), if you have a good GP or Consultant, they may diagnose you on a clinical basis, if not, you will need to send your blood abroad to be tested, but it isn't cheap. The sooner you are diagnosed, the better the chance of recovery.
If you have made it this far, than you for reading. This really isn't a 'woe is me' post, it's simply my story that I want to share, Tomorrow I will start to talk about treatment...
Many people with Lyme Disease don't actually remember being bitten and don't actually develop the classic bulls eye rash - I did, but I didn't realise its significance! In hindsight, on that holiday there were so many alarm bells (even apart from the rash) - I was so fatigued that I just wanted to sleep all of the time and kept saying '5 more minutes' in the mornings and would fall back into a deep sleep, whereas I am normally a morning person who likes to get up and make the most of the day. At one point, we thought my drink had been spiked because I was so drowsy and had practically no control over what I was saying and doing - everything was hazy and this was just my second drink. I can remember excusing my exhaustion - there was always reasons to explain tiredness (too many late nights, working overtime, not eating healthily enough, not getting enough exercise) but none that would adequately explain why I suddenly felt like I had been hit by a bus. Fatigue are tiredness are two entirely different things. In any case, I just 'got on with it' - this was always my attitude to any adversity - just get on with it. It was only six months later when I finally, completely collapsed that I realised that I could no longer just 'get on with it'.
So, what are the symptoms of Lyme? Well, actually I was diagnosed with M.E. for 5 years before receiving a correct diagnosis of Lyme. For me, I always felt that the diagnosis of M.E. was just an umbrella term for a number of issues and I was determined to get to the root cause of what had caused it. I couldn't accept that I went from a person living a full life (working, socialising, giving private tuition, seeing family etc etc) to one who couldn't leave the house on her own and basically lived between the bed and the couch. Symptoms will vary from person to person but for me, my main ones were (and mainly, still are):
Fatigue - I am talking exhaustion to the point where you feel like you could vomit. Planning your week around the day you wash your hair (and that's on a good week) to having to be bathed and spoon fed at times. Having to ask your husband to turn you over in the bed because you physically can't do it (and then having to ask him to fix your wedgie as a result of being turned because you can't do that either - at least it will raise a laugh and a sense of humour is so, so important when you're very ill).
Very low immune function - if you sneeze near me, chances are I will get pneumonia and I'm not even joking! When I first became ill, I was with my GP on a weekly basis with sinusitis, tonsillitis, gastric bugs, an enlarged spleen, chest infections...... the list goes on. I just couldn't catch a break and, to be honest, to a large extent, still can't.
Fainting - I fainted pretty much daily and sometimes, several times daily.
Huge sleep problems - I could sleep for 12/14 hours straight and still wake feeling like I hadn't slept at all. It would vary from this too insomnia or broken sleep but the one thing for sure is that I never felt refreshed after sleep, no matter how long it lasted.
Pain - muscle, joint and bone pain.
Confusion - I couldn't concentrate on anything and words would appear jumbled when trying to read.
Enlarged lymph nodes - I feel like I haven't seen my neck since 2000! But the lymph nodes in my arm pits and groin go through phases of pain and enlargement too.
Allergies - suddenly I became allergic or sensitive to so many ingredients/products and even light, at times.
Digestive issues - this could get very TMI so I won't go there at the moment but, thankfully, this is one issue that has vastly improved.
These are just some of the symptoms but they are the main ones that I experience and still do. Fatigue has ALWAYS been top of that list and it affects everything.
When you first become ill, it can be quite scary, confusing and lonely - especially when nobody has any real answers or solutions. You're trying to figure out if you let your body down or if your body let you down - maybe it's both, maybe it's neither. Added to this, the fact that some people don't 'get' it or understand it, because they don't see a broken leg/arm, it can be very isolating. My advice is to eliminate those people - you have enough to deal with as it is without having to justify how you're feeling.
The cause of all of these symptoms? An insect bite! It used to be thought that only ticks could cause Lyme but there are other hosts too. In basic terms, a tick will attach itself to your skin, suck in your blood, infect it with Lyme and the regurgitate it back into your system. At this stage, it is free to run riot within your system and the spirochetes multiply every 4 weeks. In my case, it was 5 years before I was diagnosed with Lyme so you can imagine the damage that was done. I had seen so many 'ologists' here but it was only when I went to Germany that Lyme was ever mentioned to me and all of the dots were connected. I was given a diagnosis of Chronic Lyme and finally rejoiced as I knew I had found the root cause of my issues - little did I know my battle was only beginning....
Lyme Disease is more commonly heard of nowadays, thanks to celebs who have been affected talking about it but also, there are a lot more campaigns to raise awareness. When I was diagnosed, I was part of an online M.E. forum and was the first to share my story and others then went on to be tested and find that they too were suffering from it. All had previously been diagnosed with M.E., which is a diagnosis of exclusion (as in, we can't find anything specific wrong with you so we'll label you with M.E.). The problem with Lyme Disease testing in the U.K and Ireland is that it is very easy to get a false negative as the tests are outdated and not very sensitive so if you have all of the symptoms above (and possibly more), if you have a good GP or Consultant, they may diagnose you on a clinical basis, if not, you will need to send your blood abroad to be tested, but it isn't cheap. The sooner you are diagnosed, the better the chance of recovery.
If you have made it this far, than you for reading. This really isn't a 'woe is me' post, it's simply my story that I want to share, Tomorrow I will start to talk about treatment...
Edited to add: Ticks don't just transmit Lyme, I also have Bartonella, Babesia, Ehrlicia, Anaplasma, Rickettsia, Chlamydia Pneumoniae, Mycoplasma, Cocksackievirus, HHV6 & 8 and CMV. Those as well as iron-deficiency anaemia, pernicious anaemia (due to lack of intrinsic factor in the lining os my stomach, I am unable to absorb B12 via my food) and have suffered mini-strokes and ovarian cysts - all due to those bites so PLEASE, PLEASE be very careful and aware if you or anyone you know is bitten as one little bite can change your life entirely.
Thanks for reading!
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