Whatever you do you have to keep moving and never ever give up…

Hello! It has been so long since I have posted a blog on here, and I am gearing up to updating you all with my current medical ‘status’ soon I promise! It is not that I haven’t had anything to update you with, it is the complete opposite! It has been one crazy ride this past 6 months and I haven’t known where to start to put this experience into words, or really had the mentally capacity to do so! My body right now is beyond complicated!

This is just a brief post as I start a new week with some new positive thinking as I try and keep myself and others going through whatever battle they also may be facing…

I have come to realise that success isn’t measured by just what you accomplish in life, but also how you can inspire and support others. I will keep fighting this battle, not only for myself but for all of you who suffer too. Wether this be from Lyme Disease or another chronic, debilitating and often invisible illness. I want to inspire and motivate people to hang on that bit longer, to fight that much harder and to become mentally stronger when you feel at your weakest. I want to hear someone say ‘because of you I didn’t give up’. Keep believing anything is possible and whatever you do never ever give up hope.

I love this quote by Martin Luther King:

‘If you can’t fly then run.

If you can’t run then walk.

If you can’t walk then crawl, but whatever you do you have to keep moving.”

Right now I would be lying if I didn’t say I feel physically and mentally knocked down by this illness, but I’m trying to move with it and keep changing my perspective. I am just in a new and temporary position/situation, I will take it lying down (literally), but I will roll over and look at the stars until the next phase begins. I’ll do my best to find a positive in all these challenging situations and I WILL get through these days. They are the stepping stones to my future, my destiny and to better health. I can still breathe, see and laugh. I can feel loved by my family and friends and although I can’t currently dance with my feet, I can still dance in my dreams, and thats something right?

I’ll be back soon with info on my treatment and until then remember to make the most of everyday, make it count and remember life isn’t what comes to you, its what you bring to it.

Much love always, Chantelle  xXx

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California…Round Two

On the 16th March I set off on a big bird (plane) for my next course of intensive medical treatment over in California to help my ongoing fight against Chronic Lyme Disease. I had no idea just two months earlier that I would need to return to the specialist clinic, nor that I had to once again think about raising ridiculous amounts of money again to do so. I had been deteriorating more noticeably toward the end of 2014 and by February 2015 I knew I really didn’t have any other option but to access more treatment overseas. The oral antibiotics I was having to ship over to the UK were not hitting the bugs hard enough and I wasn’t prepared to risk a complete relapse right back to square one. To be in the UK and have no intravenous antibiotics was hindering my progress massively and I could feel myself slipping more and more into the grip of the multiple infections; Lyme, Babesia, Bartonella and Mycoplasma.

The prospect of returning to California was a daunting one for many reasons. I knew what this type of treatment involved and how it was very much going to make me feel worse before better. I would also be flying solo for the trip this time too. I have got used to me, myself and I for company in these periods of illness, but there is only so much talking to the walls you can do! I also just felt an overwhelming amount of stress just thinking about trying to sort out the financial logistics of it all. This illness is more expensive than I can even put into words. You literally haemorrhage money and this is no exaggeration! I have spent approximately £35,000 so far trying to get healed and there often doesn’t seem to be a sign of the spending stopping. A working individual on a good salary would struggle to find this amount of money as ‘spare’, let alone when you are too sick to work and therefore have no income.

For about 4 weeks prior to my departure I feel like I cried almost every day…who knew one human could shed quite so many tears! The pain, the stress and the constant worry just seemed never ending. It was not just the forthcoming trip that made me anxious, but the continuos fight for survival and never knowing if and when the battle would end. This illness doesn’t give you a time frame or an end date. I can only describe my body at times like a shoe lace; when its tatty, worn and almost thread-bare and you don’t know if its going to last another day or just snap when you least expect it… and lets face it, there really is never a good time for a shoe lace to break! Lyme disease is inconvenient, intrusive, controlling and just one giant cloud of uncertainty. We learn all sorts of life skills as we grow up but nothing can prepare you for feeling like a hostage in your own body. This is Lyme, day in, day out.

With all this difficulty aside, I knew I had to get a grip and ‘crack on’! I would be flying to the US one way or another and I had to keep my mental strength in tact to enable me to do so. I wasn’t prepared to give up or be negative, this was just not an option. I wrote lists after lists and got to work kick starting my second fundraising campaign. As much as every bone in my body hates to ask for financial support I just don’t have a choice. Without fundraising there is no way I could access the kind of money needed for this type of medicine. Things started to take shape and before I knew it I had booked my flights and accommodation and dusted of my suitcase. It was happening! USA… Round 2.

I arrived in California completely exhausted, full of a head cold and barely able to string a sentence together! I am surprised I actually managed to arrive in one piece! I literally dumped my bags, power showered off the travel dirt and lay horizontal for the next 10 hours! Sleep is never to be underestimated, sick or not! I had a day to settle, unpack and get my head together for the next stage of treatment. I was ridiculously nervous but at the same time just so relieved to know I was only 24 hours away from some productive help towards getting my life back. I am beyond grateful to be able to access this treatment and I know without it my future would be merely existing or worse death.

My current fundraising page is very much an on going project and I just continually hope that I will somehow be able to raise the needed funds for treatment. Failing to do so doesn’t feel like an option, so I cling onto every bit of hope and believe that things will work out one way or another. For anyone struggling in any part of life right now my words of wisdom to you would be to believe that things will work out, and always make sure your dreams are bigger than your fears.

“Believe in yourself and all that you are…

Know that there is something inside of you that is greater than any obstacle”.

If any of you reading this are able to support my fundraising in any way at all please know that every penny is truly appreciated and a massive help. No donation is too small and would contribute to my journey in fighting for a healthy future.

Thanks for reading and be sure to subscribe to my blog if you would like to receive notifications of new updates and progress reports.

Much Love, Chantelle Xx

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On high-alert and feeling toxic! September – November 2014

In my last blog post, I left you with an update as far as August. Things were going fairly well and I was definitely feeling and seeing progress across my body, brain and general well being. This was obviously too good to be true and before I knew it, Wham! I seemed to hit another bump in the long lyme road, and it was for sure another uncomfortable ride!

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So you may be thinking what caused this downturn? Well, although we have no concrete evidence, we think the culprit was a vaccine. I was given this as part of some immunology investigations. Having vaccines with Lyme Disease is without doubt a questionable task, but these tests were important as I needed to see if I had inherited my Mums rare and complex Primary Immune Deficiency, Hypogammaglobulinemia. This causes an abnormally low level of immunoglobulins, the antibodies that help fight infection. Research has shown this can be ‘congenital’, present at birth or ‘acquired’, developed later on in life. It is vital that we determine wether or not I have this as it could effect my chances of recovery from Lyme, and it could mean I have to have regular intravenous immunoglobulins in order to support my bodies immune system.

Ok, so back to the vaccine…Approximately 4 hours after this, I felt very nauseous and lethargic. I headed straight for bed in an attempt to sleep this off and when I woke an hour later, I was experiencing excruciating pain in my shoulder where I had had the injection. Although it is common for pain after any injection, it was my whole shoulder and upper arm not just the insertion site. By early evening I was in so much pain, in floods of tears and unable to move my arm at all. The level of discomfort was off the scale, and I was having to physically support the weight of my arm even in resting position as  the general weight of my arm felt unbearable. I headed straight to my GP where my arm was put in a sling and I was prescribed stronger painkillers and anti-emetics. This was a ‘dead’ vaccine so I really didn’t expect any reaction at all, let alone this!

Within 3-4 days the pain had subsided considerably but I continued to feel totally wiped out, it was almost like I had regressed 6 months. The physical symptoms from Lyme and the Co-infections I was fighting had all seemed to creep back to a much more aggressive level. My night sweats were back with a vengeance, I had air hunger, heart palpitations and the headaches were constant. My adrenal gland function seemed to be playing up too. This can be a common occurence with chronic infection. From having this problem earlier on in the year,  I have become aware of certain symptoms which arise when this is happening. I notice I am a lot more alert in the evening when I should be winding down. I get a real sense of restlessness and almost an internal jitter. My sleep feels completely not restorative and I often feel like a zombie until about lunch time, not to mention the brain fog! My insomnia also increases and my appetite too. I seem to loose weight although noticeably eating more! You may be aware of the ‘fight or flight’ response, which is a process of the sympathetic nervous system, our bodies reaction to the stress it is under. Its like the body goes into high-alert and the hormones of the adrenals contribute to this process.

So with all this going on in my body I was advised by my Lyme doctor to briefly stop my antibiotics while my body had a chance to get to grips with the latest episode! I stayed off these for almost two weeks and then introduced them again one at a time. Unfortunately it was not before long and I was feeling worse again, I was now vomiting, having chest pains and can only describe the feeling as hitting a brick wall. It then became apparent that my liver had also become congested, so I had no choice but to stop all antibiotics, again. I was toxic, literally and it was too dangerous to continue to load my body with medication especially as my faulty detox genes meant I was not able to rid of any of the die off I was experiencing from the antibiotics. I got myself into full on detox mode. I increased my intravenous Vitamin C and Glutathione, had 30 minute epsom salt baths daily, drank copious amounts of lemon water and had regular castor oil liver cleanses. I also continued to take the herbal tinctures and tablets such as Itires, Apo-Hepat and Milk Thistle.

I had to stay off all medications until mid November and I found this really disheartening. All I know is that to rid my body of all these infections I have to preserver with long term antibiotic treatment, so to be told your body is not tolerating it is simply frustrating. With that aside, it wasn’t long before I got my head back in the zone and reminded myself that I needed to stay mentally strong, that this was just a blip and before long I would be back on track. It is not easy trying to be positive day in day out and don’t get me wrong I have my moments! I cry, I feel angry and I ask that rhetorical question ‘Why Me?’ Surely though I wouldn’t be human if I didn’t have these moments and thoughts every now and then. Being continuously ill is not easy. It also didn’t help that my 30th birthday was approaching! I always had expectations and plans for where I would be in life when I turned 30. What I had hoped to have achieved and what my future plans where. Well obviously getting bitten by a tick threw a huge spanner in the works and I could no longer follow a plan. Right now my plan is just to get through each day, just one at a time and do my best to do so with a positive attitude. I always remind myself it could be worse, and it could. I have a roof over my head, a supportive network of family and friends, and a doctor who is trying everything to fix me. At least I have a chance to get better. I am lucky I am still alive and yes, I may be in pain for the majority of that time, but I keep the hope that this won’t be the case forever.

“If you keep hope alive, it will keep you alive” 

“You look well”… Life with an invisible illness

96% of Chronic Illness is invisible… But just because a persons illness is invisible it doesn’t mean they are. It reminds me of a well known saying ‘never judge a book by its cover’. Looks can be deceiving, and this quote is so fitting when it comes to life with Lyme. Don’t get me wrong, I wouldn’t ever want to look sick. To be honest thank goodness I don’t look like what I have been through, for it definitely wouldn’t make a pretty picture! But at the same time, living through a chronic and complex disease when you ‘look well’ really isn’t easy either. When you step into a doctors surgery or hospital in the UK with Lyme Disease, you are looked down upon and told you must have depression or are seeking attention. I have been clearly asked on more than one occasion, ‘are you unhappy in your life? Would you like to see a counsellor?’. I can’t even begin to explain the hurt and upset that hits you when you hear these words, purely because it is their way of saying to me that this illness doesn’t exist and it must be all in my head. These medical practitioners are the very people I thought I could go to for help, yet help seems to be the very last thing I can get, more like no help at all. This lack of knowledge, ignorance and the neglect surrounding Lyme in a world of modern medicine is pure madness, though ‘we’ the patients are made to feel like we are the mad ones!

image In the last year I have been to A&E on 9 occasions as a result of painful complications from what at the time was an undiagnosed illness. These included chest pains, rectal bleeding, dehydration from continuous nausea and vomiting, kidney and bladder infections and excruciating migraines…this is just to mention just a few! All of which required some sort of treatment or further investigation as an outpatient or through impatient admission, but every occasion felt like a huge battle. Through tears, frustration and massively increased levels of pain, I still had to fight to be heard. I don’t really feel that at any one of these times my feelings were actually taken into consideration. I was flippantly told on one day that it must be Lymphoma Cancer, and other diagnosis ranged from Malaria to bold clots. Months down the line when they were still totally baffled by my symptoms I was then told ‘that there was nothing else they could do to help me’. I eventually had a diagnosis of Lyme Disease after paying out of pocket thousands on investigations and sending my bloods to the USA, but the fight for my health did not end here. It was just another nightmare chapter of which was only just beginning. I thought that not knowing what illness I had was difficult, but to be honest having a diagnosis and being clearly refused treatment is just as much of a struggle. In the eyes of the NHS my illness doesn’t really exist. I sit here now and wonder, how would they would respond being treated in this way. It’s not a great feeling to be ‘given up’ on or to feel like you are wasting a hospital bed, when you feel debilitating pain from head to toe. I once asked a doctor directly, how he would feel if this were happening to him or a member of his family…he was speechless and answered with a shrug of his shoulders. This lack of answer said it all. The fact is if it happened to him or any other doctors, treatment methods would take on a whole different approach. Lyme Disease is just one of many chronic illness’ which is highly misunderstood, not only here in the UK but world wide. There is very little accuracy within the current testing methods available in this country, which as a result means a lack of diagnosis or a highly inaccurate prognosis. Medics are currently unaware of how or if the bacterial infection can be transmitted among other humans, or what the long term consequences are after being bitten and untreated. There are just so many questions, and currently no where to go for the answers.There is no publicised Lyme Disease campaigns that are backed with positive media coverage or celebrity patrons. The few UK charities that do exist are struggling due to limited funds. There is no support for patients or for carers, we remain isolated as we struggle to be heard and acknowledged. This disease is a hidden epidemic and the medical system needs to stop with the denial before more lives are destroyed and even worst lost. People die from the complications of this illness, it suppresses the immune system and therefore your body becomes more susceptible to other infections and virus’s, on top of the multiple ones it is already infected with from the tick bite. There is currently not one clinic in the UK which is set up to deal with the complexities of Lyme or co-infections, Thank goodness for my truly awesome doctor in USA, she really is a superhero…I’m still convinced she has a magic cape hidden somewhere in her office! It’s a real struggle to continue treatment from a distance, away from the safety net of a team of doctors and nurses who really understand tick-borne diseases on a much greater level, but I would rather this long distance help any day, then no help at all. This disease has not only become such a physical strain but it has also become increasingly difficult to deal with on an emotional level too. I turn 30 this year and I can’t help but feel sad for the life I am not able to live. I would love more than anything to go back to work, to succeed and to socialise. The fact is although I am living I feel I am very much not having a life. I am determined though to keep fighting as I don’t want to be defined by this illness. I have always had dreams and aspirations and these are never going to go. I have worked hard my whole life to be something and I’m not prepared to allow a tiny tick to destroy my chances of happiness and to stop me from achieving at least some of my goals. If anything this illness is just going to make me even more determined to fight until I become symptom free and I will then share this hope with others. I finish off today’s post with a quoted paragraph by Medical Doctor, Kenneth Leigner… “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely appreciation or denial of treatment”.

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