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Avril’s fight against Lyme Disease

€32,805 of €35,000 goal

Raised by 251 people in 16 months

Hi everyone. My name is Avril and I’m 33 years old and live in Dublin. I never thought I would have to reach out and ask you all for help as I’ve always been an independent soul but the truth is I’m really struggling. Both physically, mentally and financially. It’s one of the hardest things I have had to do but I have to set my pride aside and be open to receiving help and support from others. My story is a little complex so apologies in advance.

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I first experienced the signs of ill health at 17 years of age and thought nothing of it. I was told by Dr’s that I was suffering from anxiety and depression and was prescribed antidepressants and assured I would get over it. I battled on the best I could even going to college and studying science, meeting my hubby and trying as best I could to live my life and make memories. During this time I constantly battled tiredness and was even known to fall asleep in lectures. I told myself that this was just me and that I was probably a person who required more sleep than others to function. Roll on my twenties where I graduated from college and started working in the pharmaceutical industry. I worked night shifts every night for two years straight, determined to make a real go of my career. Then I started to feel a bit out of sorts so decided to switch to a job with more stable 9-5 hours. During this time I started to experience awful tummy problems and was told it was due to IBS. It got so bad that I had to leave my job. The fatigue increased and I was pretty much stuck in my apartment for a whole year. I finally had the strength to return to the working world and started working in a hospital laboratory. I really felt like my life was coming together again. 

Within the next couple of years I decided to add on to my education by undertaking  another degree on a part time basis whilst working full time. During this time things got a little chaotic. Work became incredibly busy, I worked overtime hours, studied at night, travelled up and down to Galway at weekend’s to attend labs, got married and supported my husband while he undertook his PhD. My health decided it didn’t want to play ball anymore and once I completed my studies, my body decided to crash. I became incredibly ill and since I worked in a hospital decided to be proactive and try establish what was making me ill and what I had to do to get better. Unfortunately there was no straight answer. I continued to get weaker and weaker and reduced my hours to part time until it got to the stage where I couldn’t function anymore. I went to see a whole host of specialist doctors to try get an answer. I was told I had chronic fatigue syndrome, ME and fibromyalgia and was sometimes met with such comments as ‘are you sure it’s not in your head’ and ‘maybe we should increase your antidepressants’. I tried physiotheraphy, CBT, graded exercise therapy to no avail. I had test upon test carried out all whilst getting weaker and weaker. I finally met an infectious disease doctor who diagnosed me (through blood test) with an infection called chlamydia pneumonia. He specialised in Lyme disease and said my symptoms pretty much matched his criteria for that diagnosis and that was further backed up by the positive CP infection (as they can go hand in hand).

I started treatment for Lyme disease in November 2015 even though my Lyme blood test from an Irish hospital tested negative. I later discovered at best this test is only 30% reliable. The intense antibiotic treatment for lyme was extremely hard. I cannot express the torment both physically and mentally of herx reactions due to toxicity in the body. I even ended up in hospital with drug induced hepatitis caused by one of the antibiotics. It took a while for my liver to return to normal and I started a regime of supplements and natural products to help build my immune system up. I commenced antibiotic, antiviral, herbal and complementary treatment’s over the following two and a half years. Unfortunately no treatment has worked for me and I remain mostly bed and housebound these days. It’s hard to admit but I have zero quality of life. One of the hardest things in life is having the desire to live but are unable to do so. 

Myself, my hubby and my dog moved back in with my parents two years ago to try help ease the financial stress whilst I was under treatment. I never thought that I would be still be here today, be sicker than I ever thought imaginable and have no career or money. I lost my job because of this. We’ve spent every single scrap of money coming in on hospital fees, consultant fees, doctors fees, medical tests, medication, acupuncture - you name it! We’ve never once asked anyone for money. My parents will be retiring in the next year and Kev’s parents are retired so even if they wanted to help us financially they simply couldn’t afford to. Kev works incredibly hard in his job. Unfortunately he’s not on the best wages and has to pop home on his breaks to look after me. I really need a full time carer but this is not possible at the moment. I can’t thank my hubby enough for everything he does for me. I certainly didn’t think life would turn out this way for us. Not only is Kev working hard but he is also my carer. I depend on him to help bathe me, make me food, dress me and even wipe away the tears when things get a little too much. It’s really hard to have to depend on someone but that is how it is at the moment. Treatment wise they are running out of options for me. My body has taken one hell of a beating and the infections have kick started a range of autoimmune conditions. My immune system is so incredibly damaged. I’m feeling extremely frustrated, broken and upset. I am a fighter and try tell myself that I will get through this but the more knocks I get the harder it is to keep going. I am completely wiped out. The only options I have left are to travel to Germany or the states to undergo specialised treatment. Both countries have designated Lyme clinics that have successfully treated and cured even the most extreme cases of Lyme disease. Unfortunately the costs associated with these clinics are extremely high and something I cannot afford myself. To get treatment in the states is circa €100k and Germany €30k so Germany would be the most affordable option for me. There are two particular clinics doing two slightly different treatments but each come highly recommended. I’m not sure which exact treatment is right for me yet so I’m currently researching both of them. I am also in touch with fellow Lymie’s who have been treated by both clinics to help with my decision. The two clinics are Klinik St George and Infusio clinic both located in Germany. 

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So here is where I really start to struggle. I hate asking anyone for any sort of money as I know everyone is fighting their own battle in life and money is hard to come by but I really need as much help and support as I can get to try and reach my target. I genuinely need this treatment. I am barely surviving and feel like a prisoner in my own body. I started a blog whilst battling this disease called A Paler Shade Of Beauty ( www.apalershadeofbeauty.com) to not only give myself a sense of reason to keep going but to share my personal story with illness, talk all things beauty and most importantly to give people going through or who have gone through illness a voice (I receive absolutely no form of payment through my blog). I know how complex illness can be and how it effects people both physically and psychologically. I know how hard you have to shout in order to be heard, how crippling basic tasks can be and how demoralising being infirm is. I am passionate about supporting people who need it the most and it’s an area I really want to get involved in when I do get better. My main mantra is, even through illness beauty remains as I understand exactly how it feels to look in the mirror and see that shell of a person staring back at you. Illness may ravage the body and dull the exterior but beauty shines from the inside out. No matter how bad my days get the passion to support others who are ill grows inside. This can be challenging when I have limited energy but I try my best even if it’s just to be there to listen. I am sorry for the long winded story but I wanted to explain as much as I could. I would really appreciate your help and support. I know it’s a lot of money but any little bit would really help and it would be very much appreciated. I will keep you all updated as things progress but firstly I would like to thank you all for taking the time to read my story and for offering your support. 

Kindest regards

Avril

www.facebook.com/apsob 
www.twitter.com/apsob 
www.instagram.com/apalershadeofbeauty
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Sometimes you have to look back in order to see how far you’ve actually come

It’s only now that I am starting to process the past few years. Right now I am healing. I am rebuilding my life but this time last year it was quite a different story. I was hanging by a thread, ready to give up. I had no fight left in me, I was done. But I held on with the skin of my teeth. You all gave me hope. People who I simply cannot name (but you know who you are) proped me up, gave me a voice and helped in raising the much needed funds to get the treatment I badly needed. I am eternally grateful to each and every one of you for the kindness, generosity and support you have shown me. I don’t know how I could ever repay you all but I am adamant to live my life now and help spread kindness in the process.

The past few months have brought unexpected change and discovery. Myself and Kev are now on a whole new adventure. This is the next chapter, a blank canvas for us to be whoever we want to be and achieve our deepest desires. It is now time to close the last chapter of my life, note the valuable lessons I have learnt and to let the hurt and pain subside. Recovery will still take time but each day is a day stronger, a day where I have more independence and knowledge. This has changed me and no matter how hard it’s been I am proud of the person it’s shaped me into. I am proud with how far I’ve come and the goals I never thought I could achieve but I am.

Life is precious, spend it doing something you love and surround yourself with people who make you feel good.

To Kev, I owe my life. ❤️
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Hi everyone. There’s been a lot of things going on over the past few months that I haven’t really shared online. Just when you think life could not possibly throw anymore at myself and Kev it pours. We are both trying to stay positive but it’s been tough. There’s a lot going on with Infusio, my reaction to treatment, my overall health. I’ve had a few more knocks recently that have really upset me. My mind is firmly set at the ‘I want to overhaul my health, both my physical and mental health’. The knocks are just flying at this stage and I cannot take anymore so I want to take some control back. I’m back over in Infusio in two weeks time for more treatment.

Kev got laid off from his job so he’s busy job hunting. The finances are beyond tight at this stage. It’s tough when we are both now on social welfare. Obviously I’m feeling extremely guilty for being too ill to work and all Kev wants to do is work. He’s worked so hard his whole life and studied so hard to get his phd that I really hope his perfect job is just around the corner. So as you can imagine things suck at the minute. On the plus side Kevs able to bring me to my hospital appointments but it’s horrible having that sickly feeling in your stomach when it comes to your finances.

As most of you are aware I was turned down for a medical card also any Lyme treatment etc in Ireland is unfortunately not covered by the hse anyway so it all costs money. Infusio costs money and trust me they charge for everything so I’m dreading what additional costs I need to pay on my next visit. For that reason I have opened back up my go fund me. I hate having to ask for help and support again but I really need it right now.

Things are changing left right and centre and the anxiety is through the roof. If you could send positive vibes or prayers this way it would be very much appreciated. I need things to come good again. I just don’t know how many more knocks myself or Kev can take.

Lots of love

Av
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Hey everyone

I just wanted to pop on and send you a little update. I know it’s been a while since I’ve updated you all. First things first, I hit my 100 days post stem cells at the end of January. I am now awaiting to finalise a date for my next round of treatment in Germany.

The past few months have been difficult. I knew this wouldn’t be easy but it has honestly knocked me for six. Now I know what they meant when they said it would feel worse than the actual Lyme. So this repairing mode is hard on both the mind and body. I had a brief glimpse of clarity i.e. my head felt clear and I felt somewhat energised just before Christmas. Then I got hit with an awful dose after Christmas followed by another one in January. The stem cells definitely clicked my immune system to the on position but the programming is all wrong. It is working but is going a 100 miles and hour and lashing out at everything. Basically it’s extremely over reactive. I know you may be thinking brilliant it’s back working but at the moment it’s actually doing more harm than good so the plan is to calm it down to the level it should be.

Unfortunately as my immune system is in overdrive, the psoriasis has returned really badly and the psoriatic arthritis has spread to my other foot. Basically I am a hobbling, itchy tar scented mess at the minute. My hormone levels are all over the place and my glands and lymph nodes are constantly swollen so really I’m a bit of a hot mess right now. The pain levels are extreme. I don’t take any pain meds as I’m not allowed meds since I received the stem cells. I’ve only recently got the go ahead to take ibuprofen if the pain becomes unbearable. The fatigue is also hitting in really bad bouts. I like to call them flairs. During this time my body just wants to sleep and not move an inch. All it wakes up for is some food and to go to the toilet/wash. This fatigue is not only a physical type of exhaustion but a complete mental wipe out too.

I am constantly in touch with infusio. Unfortunately I am unable to receive the treatment they had planned for me called ACT as my body is too sensitive and immune system too heightened. So they had to think outside the box and have come up with another treatment plan. The good part is that they think it will really help balance the immune system and sort out the autoimmune issues but the bad part is that it will cost money. I am waiting to finalise the exact figure I need to pay and I’m a big ball of anxiety about it. The money left in the treatment fund will only cover flights and accommodation and we don’t have any spare funds to cover this treatment. I was also let down by someone who pledged money to my go fund me and didn’t deliver on it so that put us €2000 out of pocket - money which we simply didn’t have. So I’ve had to extend our fundraising target to try and raise the extra €2000 which will go straight towards this next round of treatment.

I feel so bad for having to ask for people’s help once again but I did not expect to be let down and then for an issue with treatment to crop up. I would really appreciate any support you could offer. Any amount would be very much appreciated and I’m open to any fundraising ideas. Thank you once again for your kindness and support. Because of you my body is repairing, it isn’t a straight forward repair but it is still a positive step. I have had loved ones comment that they are seeing glimpses of the real me return. I am extremely grateful for all of your kind messages over the past few months. Every single message, comment and well wish does not go unnoticed and means the absolute world to me.

I will write another update when the treatment plans have been finalised.

Lots of love

Avril
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Today was a pivotal day, the start of a new chapter in my life. One of healing and recovery. Kevin Mcdonnell had the important job of administrating my stem cells. This mornings operation was a great success. Apologies for the shocking way I look, this past week has taken so much out of me and I’m swollen up like a balloon with my glands and lymph nodes. I’m also suffering an almighty break out which is the badness coming out. Basically I’m looking so hot right now - not!

I’m excited for what lays ahead. I’m flying home on Sunday and it’s complete bed rest for me for the next 100 days so these bad boys can do what they do best. I’m back over here again in February for additional treatments. As I have to raise some extra funds for this I have had to reopen my go fund me page. I’m sorry I have to nag you all once more but if you could lend any sort of hand I would really appreciate it.
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€32,805 of €35,000 goal

Raised by 251 people in 16 months
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