My name is Emma, I am 29 years old and I have been chronically ill for the past three years! I have recently found out after many different diagnoses that I have Late stage - Chronic Lyme Disease (Lyme Neuroborreliosis - meaning it has hosted itself in my brain).
I am appealing for help to get my life back, I want to go back to being the happy go lucky and active person I used to be. I have done a lot of fundraising for many different charities over the years but I never thought I would be fundraising for myself. Thanks to recently being diagnosed with Chronic Lyme Disease I have been left with no choice.
I am from Northern Ireland but moved to Glasgow to attend University in 2010, I completed my BA Hons in Tourism and Event Management. Throughout my time at University, I completed a lot of work experience with a variety of different charities. I was very happy to use my event management skills to organise music festivals for charities. I really enjoyed being a busy body, I couldn't help but get involved with everything that was going on, I loved to be busy and felt amazing raising money for wonderful charities such as Oxfam, MS trust etc.
I stayed in Glasgow after I graduated, I got a job with NHS 24, it was not what I had planned to do but it turned out I really enjoyed helping people. I was very happy in this job, I worked there for a few years until I had no choice but to quit due to my deteriorating illness.
It all started three years ago, I became suddenly unwell a few weeks after we were camping in the Highlands in Scotland. I was camping with my partner we both enjoyed this getaway but little did we know how much I would have to pay for this small pleasure. A few weeks later I had been doing my normal activities on my day off work, I was working shift work with NHS 24 at this time. I went to stand up and both of my legs gave way causing me to fall and I was left with numbness, pins and needles and weakness in my left leg.
I was later admitted to Hospital, I was kept in Hospital in Glasgow for a week, I underwent many tests such as Brain and Spinal MRI, blood tests and neurological examinations. I was discharged after a week and advised they honestly didn't know what was wrong with me, they advised me I would need to be seen as an outpatient with Neurology. At no point did we think or even know about Lyme disease at this point. I had many more tests, Doctors appointments and hospital visits.
My symptoms continued to get worse, every month there was a new symptom or pain. During an out patient appointment I was advised I had Functional Neurological Disorder. New issues, pains and symptoms started to appear every week, I was back and forth to the Doctors and the Hospital.
Around a year after I first got ill, I now had developed issues with my full left side of my body, I lost power in my left arm for a few weeks and had constant weakness in my left arm, leg and neck. I suffered a lot of pain all over, over the years this continued and our lives changed a lot.
I became unable to use my left arm for quite a while, it was not safe for me to be on my own as I would burn myself and could not feel the burn on my left arm until it was too late. I was unable to do many things such as get in and out of the bath or make myself tea. At this point we were living in a top floor flat in Glasgow with no lift so I became housebound. So we had to make the decision to leave our lives in Glasgow, I had been off sick for long periods of time so I left my job and my partner had to leave his job in order to look after me as he was struggling to juggle both and he was becoming more concerned about me being on my own.
In October 2017 we moved back to County Fermanagh, to our home town to have the support of our families. We had to wait for 1.5 years to get suitable accommodation. I needed many adaptations as my mobility flares up and down a lot, some days I am not able to shower even with a shower seat and a wet room. Over the past 3 years I have had many tests, non invasive and invasive including numerous MRI's, nerve conduction studies and a Lumbar puncture. I have also been diagnosed with many things over the past three years, I have been diagnosed with Functional Neurological Disorder, migraines, costochondritis, trapped nerve, trochanteric bursitis and fibromyalgia.
Symptoms I suffer with to date. (Worsened as time as went by)
-Depression and anxiety
-Mobility issues (have NHS walking stick and NHS wheelchair for long distance)
-Loss of brain function & brain fog
-Muscle twitching, spasms & cramps
-Headaches & migraines
-Joint, nerve & bone pain
-Severe chest & neck pain
-Back, jaw, eye & hip pain
-Unable to put any pressure on either hip
-Weakness in left side & joints
-Numbness in limbs
-Chronic sore throat
-Unregulated body temperature
-Low B12, low vitamin D, low folic acid
Throughout the past few years my family have had to pay for many private appointments due to very long waiting lists in Northern Ireland. I was having to wait for 18 months to see a Neurologist and 18 months to get into the chronic pain clinic. My mum had to bring me to many of the appointments or investigations which had to be carried out in Belfast.
More recently we have become aware of Chronic Lyme disease. We have since followed every possible route to get the treatment needed via the NHS but due to a lack of both recognition and resources in Northern Ireland the available options have provided no answers as of yet.
My mum once again had to go down the private route, she researched the best lab to get the Lyme disease test done. The blood test was completed via a very reputable, award winning lab in Germany. One week later the results were in, I had chronic Lyme disease, co-infections a very suppressed immune system. So after three years of my suffering we now have an answer.
The main priority for my family and myself is for me to get well again as three years of my life has been lost to unexplained illness and misdiagnoses. We have no choice but to go private once again but with my family having exhausted their means of paying for private appointments, we are asking for your help. I have been unable to work for two years now due to this horrific disease. I really want this treatment so I can get better and get back to working and living the normal life of a 29 year old, I have been ill since I was 26 and I feel I have lost out on so much, this illness has taken away a few years of my life and now I know what is causing the illness, I want to treat it and get better!
If Chronic Lyme disease is left untreated it can lead to death, a number of people have died from this disease. I have all of the disease symptoms apart from having heart problems, so I want to get treated as soon as possible. It is so important I get this treatment as soon as possible!
We have found a private specialist and by following his treatment plans, his patients get back to nearly full health which is unbelievable. These appointments are expensive and he treats using both western medicine and alternative medicine. This will be a long term treatment plan which includes being on medication for up to two years. I have my first appointment with the specialist in February which cannot come quick enough. It will be a long process but there is light at the end of the tunnel for once in the past few years.
We are pleading for donations of any amount!
Every donation is appreciated!
Thanks for reading!https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme-disease/http://www.ticktalkireland.org/