So this is it, I am over half way through an 11 hour flight and I will soon touch down in America. This is where the real work begins… My journey to fight Lyme Disease.
After finally getting a diagnosis back in November, it has been really full on trying to make and finalise decisions and plans for treatment, not helped by another week in hospital. Travelling so far takes a lot of organisation, time and money! The latter of which I knew I didn’t have enough of.
With this in mind I began by focusing on setting up a fundraising page. I made a basic picture/text video (just about with my technical skills!) I also wrote a brief summary to explain what illness I was suffering with and why it had lead me to asking friends, family and even complete strangers for money to help me on my way. This was a hard thing to do and I felt embarrassed to have to ask others for this type of help and support, but the fact is, I had no choice. The treatment of late stage Lyme is costly and there is NO quick fix. It involves both aggressive intravenous and oral antibiotics as well as long term supplement medication. In addition I will need regular monitoring of my bodies vital organs, as this disease can have serious and complex effects on the body, and can ultimately kill you if left untreated.
With the overwhelming response to my appeal for financial help, it has already meant I could book a consultation appointment, flights, transfers and a hotel. If the doctors feel I am strong enough to begin treatment straight away then I could be in the USA for an extended period of time. This will be the first of many trips and treatments, so you can imagine how the costs will mount up over time. I have been estimated totals of well over £20,000 to feel well again.
I currently have a real mixture of emotions going on… There is so much excitement for the prospect of recovering from this debilitating illness. I feel like it has invaded my body and literally stolen half of my life. I feel so far from the energetic and sociable person I once was, but I now have hope.
I already feel a massive sense of relief, just having an appointment booked for the 31st December. I will soon sit face-to-face with a Lyme literate medical doctor in a specialist clinic. It will be someone who will not only listen, but who will finally have the knowledge to understand what I am going through and the effect that it is having on my whole body. I think it is madness that I can’t get the treatment I require in the UK, and feel very let down by the medical system. There is so much devastation caused by this disease, not helped by their ignorance and lack of knowledge. Lyme disease is destroying people’s lives throughout the UK, but the NHS are just not willing to accept it. The medical guidelines in England need to be reviewed, and changes desperately need to be made.
I feel like I have deteriorated a lot in the last 6 months, but even more so over the last 6 weeks. I feel so week and exhausted and I am in a constant battle of pain throughout my body. Even just standing still now for a few minutes causes shooting pains down my back and I feel as if my legs could give way at anytime. I get stabbing pains in my chest and have heart palpitations, its so scary. I feel like I am trapped in a completely different body, one that has been wired wrong!
If I am honest, I am also really scared. I know recovery will bring its own problems and I will feel a lot worse before I feel better. I will keep in mind that any additional pain once I begin taking medication will mean that the bacteria are dying off and this is a good thing! So it is definitely a case of ‘no pain, no gain’ in this instance, and mind over matter!
I am lucky that I am having the opportunity to try and rid this Lyme disease from my body. There are so many other individuals who are suffering all around the world, who simply don’t have the funds to travel or to pay for treatment. I would not be flying today had it not been down to so many kind and wonderful people who have generously donated their hard earned pennies to help me, and for this I am so truly grateful. I am being given a chance to try and recover from this horrible illness, and I am feeling positive that one day I will be Lyme free, I can’t wait!