This summer marks 2 years since my surgery in Boston! In 2015 I had my surgery with Dr Lee to fix SCD and last summer I returned for my follow up and vestibular therapy at MEEI. I might not be better (yet) but this place has changed my life!
Miss Boston summers SO much ❀
It ultimately led me on my long journey in treating Lyme disease. Something I had been dealing with for YEARS and years, without even knowing. It stopped me ever recovering from my surgery. Over the last two years so much has happened and I feel like I have grown in so many ways. Despite how unexpected and challenging life has been! Nothing has has ever really gone to plan but I’ve managed to find the strength to keep going. Not once have I wanted to give up because I know I will get to the end of this ‘little blip’ in my life. I’ve met some of the most incredible friends who I know I’ll have for ever. There is really nothing as special as finding people who know exactly what you are going through.
In terms of where I am health wise right now … well things are VERY up and down! Two major problems have arisen as a result of the first surgery I had over 3 years ago for my ear. Damage was done to my middle ear which causes a lot of pain, pressure and hearing loss because my ear gets so blocked. I’m waiting to get a grommet which will hopefully improve some of my weird ear symptoms. Second major issue is headaches. I had a lumbar puncture done a few years ago which set off severe postural headaches (head pain that sky rockets when I am upright). Which is obviously not very practical in life! Annoyingly this could be caused by a CSF leak so I am waiting for some tests to try and figure out what’s going on. This is being done at the NHNN in London so I feel in safe hands. The treatment is straight forward so that’s good. I have many doctors in London looking after my various diagnoses but not one of them understands the significance of Lyme disease on my overall health. You can try to educate them but they tend to just think you’re crazy, so it’s best to leave this side of things to yourself. I hope more than anything this changes one day.
Dizziness continues to be constant as my brain can’t compensate! I’ve been told it won’t until the headaches and Lyme are addressed. But the main thing is that my brain can and will compensate eventually. I know I keep saying this but there really will be nothing stopping me once the Lyme and headaches are sorted out. I am booked to start vestibular therapy in October. This is in London which is much more practical than having to jet off to Boston again (although going to miss my amazing therapist out there) . So we will see how that goes.
I am starting a natural approach to the Lyme disease treatment. No more anti biotics! They didn’t work for me & sadly don’t for some people unless in the acute phase. My immune system is suppressed so I need to strengthen it up. I am also detoxing like crazy to flush out toxins. I am now the proud owner of an infra red sauna which I try and use on a daily basis! My parents don’t really have any space for their belongings anymore! I am on supplements to support my immune system and detoxification. These are two of the main things that need to be addressed when treating Lyme disease but obviously it’s much more complicated than it sounds. But I’m hoping that with time my hard work will start to pay off.
got through 12 weeks of this stuff (IV anti biotics)…
I continue to need IV fluids for hydration although I need much less than I did this time a year ago. Which is HUGE progress! I now have a port in my chest which has improved my quality of life significanlty. Ever since my ear surgeries I’ve had a PICC line which meant I wasn’t allowed to get my arm wet due to infection risk. For those of you who want to know what a port is all about please see my pictures below…don’t look if you don’t like needles though. Now the PICC is out I can do what I want so I was finally able to go swimming a few weeks ago! I’ve been desperate to do this for about 2 years. It was a bloody massive challenge but my dad’s amazing school let me use their pool which meant I had it all to myself. I looked quite a sight in my waterproof headband (can’t get my ear wet) waddling along with my flippers and float. By far the easiest exercise for me but not something my body can cope with doing very often. It was impossible to do much but I felt so free and almost forgot about being ill for a few seconds. Which is literally a dream. I used to swim a few times a week before I became ill and it’s right up there with one of my favourite things to do. So desperate to try open water swimming but think I need to build up my strength (& swimming skills) before any of that ! I do yoga as and when I can which is helping strengthen my balance. Not easy with the dizziness, but I try!
I have completely turned my diet around which I am 100% sure has helped with my gastroparesis symptoms. I can keep more food down than I could and pretty much all my friends and family say I look the best I have in years (although not how I feel on the inside!). I am now following a vegan diet. I eat a plant based diet free of gluten, dairy and refined sugar. It’s been a challenge but my dad has been doing it with me for support and I honestly don’t miss anything anymore. I have many reasons for choosing this diet and understand that what works for some doesn’t work for others but I recommend you watch What The Health if you’re interested. I will do absolutely anything that improves my symptoms. It’s also encouraged me to get more creative in the kitchen which I love. Don’t talk about the mess it makes though…
So all in all I am doing OK, plodding on and making the most of what I can do, not what I still can’t. Everything’s in place … my body just needs to cooperate and get on with it . I’m working hard and hoping to share some positive news soon! I am getting closer to the end despite the recent set backs. I always knew this journey wasn’t going to be an easy one. I keep myself busy and continue to live in hope that things are going to get better and better. I’ve got SO far already so there’s really no giving up now!
Also, I made this video a while a back which aims to put together the last 4 years (which is so not an easy task) so please feel free to have a watch if you haven’t already.
Keep on Keepin’ On!♡
OK so a lot of people have been asking what my port is all about so here’s an overview…it’s a central line that sits underneath my skin underneath my collarbone, it kind of feels like a piece of lego (haha). I have a little scar where they put it in but you can hardly see it now. To access the port I have to stick a needle through my skin (not as horrific as it sounds, but a bit odd). This is the port with no needle..
This is the needle…. :-0
And this is the port accessed
Serious life changer and it will be removed when I’m better!