Lyme Disease UK, a patient support network for Lyme disease sufferers and their loved ones. Here you will find information and news about Lyme disease as well as details regarding local face to face support groups. The LDUK team also attends public events, meetings and conferences, liaises with other Lyme disease organisations and campaigns .
What an amazing event this fundraiser was. I was so honoured to be invited to attend Molyneux Community Centre on behalf of LDUK last week. I was made to feel comfortable from the get-go and was looked after so well, I am so thankful to everyone present for going above and beyond.
I had suffered an awful night health-wise and really had to dig deep to find the strength to attend this event.
I refused to back out of my commitments and I really wanted to be there, not only to show my support but also my thanks. We dug out the wheelchair to prevent me feeling panicked if I felt dizzy and weak at any point. I know only too well how difficult it is to organise fundraisers and get the backing needed for them to be a success.
Everyone at Molyneux came together and worked so hard not only in supporting this event financially but bringing food, raffle prizes and baked goods to share amongst us all. Bringing everyone together and really making an afternoon of this event. It brought so much joy when we were often discussing tragic Lyme cases, symptoms and experiences. Finding a balance with these kinds of events is key.
You want to ensure that people become more aware and educated but you also want to have fun! Molyneux Community Centre achieved this and more.
They are an inspiration for anyone wishing to host a fundraiser in the future. They are proof that a fabulous bunch of kind people, the local community, everyone coming together, support and fun makes an event TRULY a massive success.
With over £500 raised and everyone smiling, we couldn’t have wished/hoped for a better result from just an afternoon. It really is outstanding. Lyme disease isn’t a kind disease by any means. We learn to adapt but also practise gratitude like it is our religion. We become far more thankful for these heart-warming occasions and they really do restore our motivation and faith in our fight but also our life in general.
Being surrounded by support helps us feel less alone, gives us courage and the confidence to speak out and share our stories.
Sharing our stories helps people to become far more educated on the disease and helps protect and save lives. More than we truly know.
We won’t just celebrate the money raised from this event – it means SO much more than that. We must celebrate the AMAZING people, with such kind hearts who made this event sparkle.
The memories made from this event go beyond the cheque kindly awarded at the end.
It will be remembered for the friends made, the laughs had and the smiles on people’s faces. Chronic illness can be a deeply dark place. We forget how to smile and that we DESERVE to smile. Strong supports are a life-line to us as they restore our motivation to keep living the best life possible, that we do have meaning and a purpose and we DESERVE life.
Finally, THANK YOU Molyneux Community Centre, you are all super stars and truly amazing. Thank you, you will have inspired not only your community to help support Lyme Disease but will have also inspired the Lyme Community to host and hold events too in support. I hope we can keep in touch and support one another.
Hey there! My name is Brittany, I’m 24 years old, and I want to share my journey of recovering from Lyme disease and other chronic illnesses with the hope that it can inspire and help others! The story is a bit depressing at first, but I’m recovering now, so don’t worry!
Back in 2010 when I was fifteen years old, I became quite sick. I went from being a pre-professional dancer and honor student with an active social life, to being home bound and often bedridden. I was unable to read or do any schoolwork, and unable to leave the house except for carefully arranged appointments with medical specialists. Due to my condition, I was never able to finish high school or go to college.
Eventually I was diagnosed with Chronic Migraine, Lyme Disease, ME/CFS (Chronic Fatigue Syndrome), Fibromyalgia, Multiple Chemical Sensitivities, Depression, Anxiety, Mold Illness, SIBO, and Post-Traumatic Stress Disorder.
I saw many medical professionals, tried many different treatments, and I did go to one clinic in Santa Rosa, California that helped me a lot. I worked with them from 2013-2016, but it wasn’t financially sustainable for me to keep working with them. In 2016 I also had to move, and there were lots of complications with the move, including exposure to mold and toxic chemicals. I ended up having a big relapse in 2017.
At first, it was a pretty dark time for me, but that relapse was actually what got me to try a brain retraining program, The Dynamic Neural Retraining System (DNRS), along with Laughter Yoga, and those are the things that have ended up helping me so much!
Over the past year I’ve been able to participate in online Laughter Yoga video calls, and it has made a huge difference for me!
Laughter Yoga has many scientifically proven physical and mental health benefits. It lowers the stress hormone cortisol, boosts the immune system, lowers blood pressure, oxygenates the cells, reduces depression, releases oxytocin, which helps people to bond, and releases endorphins, which are a natural pain reliever.
Not only has Laughter Yoga had a profoundly positive effect on my symptoms, but it has also helped me to be able to connect with people and make friends!
I’ve been doing one laughter session every week on Facebook Live for the past three months. I’ve received many messages and comments from people letting me know how much my video sessions are helping them! Click here to watch a video of one of my recent Laughter Yoga sessions!
On June 1st and 2nd I was able to attend an in person Laughter Yoga Leader Certification course! It was so amazing to get to spend a whole weekend learning more about the benefits of Laughter Yoga, and how it all began. It also helped me to become a better laughter teacher, and I’m so excited that in July or August I’m going to be able to start offering online Laughter Yoga classes on Zoom.
I am no longer homebound, but I want to teach Laughter Yoga classes online for people who are homebound, or unable to attend in person Laughter Clubs. Because I know what it’s like to be completely isolated, and I know how powerful it is to be able to get on a video call with others to laugh and cheer each other on.
Where am I at in my recovery now? Although I am not fully recovered yet, I have made so much progress over the past two years!
I am able to think clearly, concentrate, and focus. I can retain information.
My constant migraine has improved so much! Instead of being a 7/10 with frequent spikes up to 9/10, it’s now down to 5/10 and I never have high spikes!
My body/joint/muscle pain is almost gone.
My nausea is almost gone.
I’m so much happier, and I feel joy again! My depression has improved a lot!
I feel a lot calmer and at ease, my anxiety is way better!
My insomnia has improved, I am able to fall asleep by 11:00 pm instead of being up until 3:00 am every night. I can also sleep through the night.
My digestion works so much better! I have regained 12 of the 20 pounds I lost!
My sensitivities to light, sound, smells, and chemicals are so much better!
I have more energy! I can walk to the bathroom, and usually I can walk to the living room and kitchen! I still need my wheelchair to go out, but I have the energy to be out and around people.
I am now able to go out in public! Movie theaters, theaters for live shows, restaurants, grocery stores, clothing stores, parks with lots of people, libraries, and the DMV (Department Of Motor Vehicles) for my photo identification card!
I can eat solid foods instead of everything being puréed.
I can sometimes take off my supplemental oxygen for up to an hour!
I can ride in the car for up to an hour and a half.
I’m able to do multiple phone calls and video calls every day.
I’m able to talk again! I’ve gone through periods of time where I was completely unable to speak.
I’m able to be out of the house for up to nine and a half hours!
I am so grateful for all of these fabulous improvements, and that catches you up to where I am now.
If you’d like to know more about me, more about Laughter Yoga, or see all of my past videos, check out my website here.
As a sufferer with chronic #LymeDisease since mid-2013, LDUK asked me to share my story. The more we can do to raise awareness during #LymeAwarenessMonth, the better. This is my personal contribution to #WakeUpToLyme. I hope it helps anyone, be they a fellow sufferer, or a family member or friend of someone going through this with them.
My post covers the initial crash, struggles with the UK medical profession, trips to Brussels and the impact on those I love. Ultimately, getting to such a low point through destructive behaviour that I had to find a way back.
May 2013: Body crash, bed ridden & frightening weight loss
I’d been struggling for a period of about 15-18 months prior to this with cycles of feeling really rough. Not quite enough to make me too sick to work but disturbing and puzzling nonetheless. I have always been healthy so it wasn’t normal for me to be struggling like this. I knew something was up but I had no idea what it might be. I did begin to worry I was simply working too hard and my body was reacting. However, in May 2013, my body totally crashed. I went from taking part in running races to this:
Bed-ridden for initially 10 days and slept almost constantly for 3 days.
Lost almost 14lbs (6.5kg) within 3 weeks!
My wife made me drink fluids and eat what I could during this time. I literally had no appetite for any food or drink and I was unable to think for myself during those 3 weeks. For family, it was a frightening time. I was oblivious until reaching the end of those initial 3 weeks. Then I encountered these symptoms which left me feeling at a total loss, frightened, frustrated and totally inadequate. I didn’t realise then that the last point was the beginning of a much darker chapter mentally.
The Bullseye Rash Myth
Far too much publicity on anything raising awareness of Lyme disease seems to highlight the importance of the ‘classic’ bullseye rash. I did not get this and I later learned that between 50%-60% of Lyme Disease sufferers are the same. And they’re the diagnosed ones! Instead, I tended to get rashes on my chest and in my armpits. Also what I had thought were spider bites but turned out to be very painful nodules that appeared every six weeks, to the day! When that happened I knew there was something more fundamentally wrong with my health.
Navigating the UK Medical Profession
I have to say I was incredibly lucky in having a very understanding and empathetic GP. We left no stone unturned in terms of extensive blood tests, x-rays and the checking of all my organs. Despite this, I found this period to be incredibly frustrating and was in despair in the end. Not knowing what you’re actually dealing with when you know something is fundamentally wrong, is very unnerving. I found myself wishing for a test to identify something, anything that could then be treated. This may sound a bit perverse to wish for anything to be found. I simply wanted to know what I was dealing with so I could be treated. At times like this you start to wonder if you’re losing your sanity and if this is all in the mind. This wasn’t helped at all by a very dismissive Infectious Diseases consultant and his equally dismissive registrar, who I was referred to via my GP. Basically my test results didn’t meet their standard test indicators so I was literally told that it was viral, to go away and to stop my treatment of antibiotics. This was a real blow to me at the time and again. If it hadn’t been for the help of family taking notes at those meetings, I’d have really struggled to make any sense of what was going on. And I would have blamed myself completely for what was going wrong. Thankfully a Lyme disease specialist in the South West reassured me it wasn’t in my mind at all.
I cannot stress to anyone in the medical profession how important it is to be more open-minded when someone who is clearly in distress, who knows something is wrong, comes to you looking for an answer. Please do not be dismissive when they tell you their story. In fact, allow them to tell you that story and think beyond your own specialisms and bias. Please.
So while I tried to find a way of accessing treatment and a firmer diagnosis I tried holistic treatments like reiki and kinesiology – both of which were very helpful.
July 2015: Brussels and from desperation to hope
Through mid-2013 to mid-2015 I had been on a series of antibiotics that often helped temporarily but I would always relapse and experience a flare up in symptoms. I had also been diagnosed with depression from January 2014 as a direct result of my chronic illness and I was prescribed fluoxetine. More on that later!
Thankfully it was family who were proactive in extensively researching possible options in other countries. We looked all over Europe and America. Ultimately it showed that mainland Europe was a realistic option for me, with medical professionals in places like Germany and Belgium having far more awareness and understanding of dealing with Lyme disease.
So early July 2015, I headed to Brussels to see Dr B. At this point in the process I started to wonder if I would ever have anything positive to work with. I walked in a total shadow of my former self, half expecting to be told it was in my mind again. What followed was an consultation of over an hour where he listened to my story, went through an incredibly extensive symptom questionnaire and examination. To hear him tell me I was suffering from a “multi-systemic infectious disease” was an overwhelming relief! He also explained to me that I was very likely to be suffering with co-infections and that the Lyme disease had been in my system for so long (since as far back as Nov 2011 – Feb 2012). One major co-infection was Babesia – a malaria-like disease. This was pretty severe by this point. He also explained that my immune system was totally shot and needed rebooting. This came very gradually.
I was put on a multi-faceted treatment plan to tackle the disease and co-infections. The doctor also advised me to take other steps to facilitate good gut health as much as possible, such as going dairy free for 3 months, at least. I am still dairy free to this day! We anticipated I may be on a 5-12 month treatment programme in total. I left Brussels with genuine hope and a renewed sense of purpose which I hadn’t felt in over 2 years! I cannot tell you what good that did mentally, for a period of time. I ended up on medication until December 2016 – far longer than originally thought. Progress with medication was not a linear path either. Sometimes we had to revert to a more extensive programme, at other times it was a case of changing some medication or the dosage. The key was charting my symptoms and ongoing communication with Dr B between appointments. Below is an example of one month. In total I had 4 consultations in Brussels, supplemented by some email, phone, Skype chats.
The financial cost to myself and family was enormous. I’m not talking consultations with Dr as they were relatively very good value. It was the cost of some trips to Brussels, the sheer volume of medication, the cost in 2 lost promotions. Literally thousands of pounds. But at that time all that mattered was my health. Again, I know I’m incredibly lucky in having a family able to help out with the funding of the treatment at such a desperate time.
Dealing with lack of understanding
Note that I did not tell anyone other than closest family that I was off medication. People want you to be better. As soon as they know you’re off meds, there is an expectation that you must be over it. In my case – and this is apparently very common with chronic Lyme disease – I will never be ‘cured’. It will continue to lay dormant in my system and can in fact flare up, if I push things too hard. That is hard for me to deal with so I don’t expect family or friends to fully appreciate this. It doesn’t mean I can’t get frustrated with their lack of understanding though. However I have to accept this and not dwell on it.
Dealing with Depression
On this I can only describe myself as a total hypocrite. I have family and friends who have struggled with depression for years. With all of them I have been genuine in believing and assuring them that medication for depression should be thought of in the same way as medication for any other illness. However, on taking medication myself, I found I was branding myself a failure, weak, inadequate. That inner voice became ever more negative and critical. Never a good place to be heading.
You will instantly recognise this was only ever going to be destructive. I talk about this openly in the Blokeology podcast – from about 25 mins in we chat in raw detail about my Lymes journey, dealing with depression and the awful impact this had on myself, family and friends.
The paradox in all of this was that as my health began to improve, my mental health plummeted to a point where my constantly berating and almost cruel negative voice resulted in very self-destructive behaviour. I actively told myself I was a failure, a sht husband, sht dad, sh*t son, brother, friend and all the rest of it. I ultimately became exactly that by being self-destructive, by actively pushing people away and making other poor life choices. My upbringing was always one of being open in communicating with family and yet through this extremely dark period, I had done precisely the reverse. Ultimately, I reached such a low point and destroyed everything that was dear to me and I came to realise I could either sort things out or things may be permanently lost. I was incredibly lucky that those dear to me where willing to listen, understand, forgive and not forget. I made promises to myself and those around me to return to be a better person but this time, being far more self-aware. Not one day goes by when I’m not thankful to family and friends for the chance they gave me. I do not underestimate the impact this had on them. And I continue to keep my promises such as reading a verse from Lau Tzu every day (the Tao Te Ching text), meditating every day, and talking openly.
I no longer take any medication for depression. I had been questioning it for some time as I felt, for me, that the daily routine and promises were what were truly helping. What helped me finally make that decision was reading Lost Connections by Johann Hari. A highly recommended read, it’s about how we live in a sick society so it’s no surprise our mental health suffers. He is very clear in his message that medication can work for people. What he is also very clear about is how big pharma has manipulated test results in order to obtain licenses. I have been fine since coming off medication. Again please note that I am not for one second suggesting others do this, or that they are at all weak for taking medication. Whatever works for your mental health, I would wholly support and endorse. You have to find what works for you.
So to finish…
I now have a new normal. I will never return to how I was before May 2013. This I accept thanks to the kind explanations of Dr B, and an Occupational Health specialist and a counsellor who specialised in “Internal Family Systems” – a therapy that deals with the various parts of our personality.
A few brief points here:
I still keep a daily log of my main symptoms, plus wellbeing related things I do to help my health.
I meditate daily.
I exercise as often as I can. The difference is knowing where my ‘red line’ is and not pushing beyond that with exercise of work for that matter. This helps enormously.
I talk openly about my illness and the impact on my mental health. Communication helps not just yourself, it helps everyone around you too.
I take daily supplements that are key to helping maintain a healthy immune system – Grapefruit Seed Extract and Berberine.
I consider myself very lucky indeed. I am still able to be active, I still have my family, I have very supportive colleagues.
Some key lessons for anyone reading this:
Be kind to yourself. You can often be your own worst critic, particularly when you feel you’re not getting anywhere with treatment, or when suffering with any flare ups.
Keep a log of your symptoms. This was done while trying to find out what was going on. Then done in much more depth after seeing Dr B. These logs help you identify patterns in your symptoms. Any medical professional you show these to will find these a valuable insight to your story.
Maintain a log of your symptoms even when you improve. I still keep a daily log to this day. It helps me identify and even pre-empt lapses. This has been an enormous help with balancing work, family and exercise.
Read and research. You may often find you yourself are not capable or simply don’t have the energy or mindset to cope with this at times. If that’s the case ask family and friends if they can help by undertaking this on your behalf. If you don’t have anyone that close to you, seek help from communities like Lyme Disease UK.
Talk! As you read with my points about depression. You can very quickly and unwittingly shut yourself off from the very networks that you need. Talking to people who will listen and not judge is an enormous help.
Never take no for an answer. Keep pushing if you are struggling for a diagnosis. You know your body better than anyone else possibly can.
You may find the book “Healing Lyme” by Stephen Buhner very informative and helpful. He has his own treatment protocol and I have followed some elements of this.
I truly hope this helps you and those close to you – be they partners, immediate or extended family, friends and colleagues.
LDUK has kicked off Lyme Disease awareness month with a bang. Across the country with the work of the LDUK team and members of our Online Community, we have been able to get major UK landmarks to glow green in support of Lyme disease awareness which is just incredible and leave me completely speechless.
Last Saturday (4th May 2019), my family and I hosted an ALL WHITE ABBA NIGHT in support of Lyme Disease UK and what a fabulous night it was. The dance floor was full all night long and with the generosity of the guests and people in the community donating to the cause we managed to raise £280 for the charity. It was amazing to see the residents from my Dad’s park home and parks: Wyrevale Park & Acresfield Park, come together and go the extra mile having slogan t-shirts made with lines from ABBA songs. It really meant SO much to me to see everyone having the best time and really getting into the night. The local printers here in Garstang: PRINTMOB, kindly donated the amazing Lyme Disease UK selfie frame & donated to the charity from the cost of the t-shirts. It is really heart-warming to have the support from the local community. It really does mean the world. A big thank you to everyone who attended the evening, donated and made it a truly memorable night.
I then had the AMAZING opportunity to appear as a guest on ITV Granada Reports on Monday 6th May 2019, where I shared my Lyme story and raised awareness about the disease. This was a truly amazing experience. ITV looked after my family so well and I am so thankful for the opportunity. I know that since the interview, ITV have been getting a lot of feedback and everyone is still viewing the interview and sharing it over the social media platforms which really is helping get the message out there. A BIG thank you to ITV – I’m so very grateful to you. You can catch up on the interview below:
Sophie Ward interview on ITV Granada Reports - YouTube
Then a very MAGICAL and special event happened, as Blackpool Council kindly lit up Blackpool Tower green in support of Lyme disease awareness. This too is so special as it is also the tower’s 125th birthday next Tuesday! It is such an honour to be able to tie these events together in Lancashire.
John Gilmore ( Gilly) from BBC Radio Lancashire kindly came down and conducted an interview which went live on his afternoon show on the 8th May 2019 and can be listened to below.
Sophie Ward interview on BBC Radio Lancashire - YouTube
Jessica from That’s Lancashire TV also kindly came down in support and interviewed me for channel Freeview 7: That’s Lancashire TV’s news loop running from 6pm-8am on the 8th May-9th May, to capture this moment. I am so grateful to all the local media stations for their support and enthusiasm with helping us raise as much awareness as possible. We can’t forget to say the BIGGEST thank you to fellow members Angela Jones, her family and Yvonne Forey for coming down in support! I know how difficult it is with Lyme to come to these events. So, your support made the night even more special and memorable. Thank you!
Nicola Adam, the local news editor, also goes above and beyond to help raise awareness as she placed my story in the Blackpool Gazette on the night of the light up 7th May, 2019 and on the front page of my local paper the Garstang Courier. I am grateful to her for all her hard work, amazing write ups and her support. Thank you, Nicola.
I hope that we can keep the ball rolling and really leave our mark on the world. We really are making this year’s awareness month a month to remember already and we are only one week in. Please enjoy the pictures from all the other amazing UK landmarks glowing green in support of us.
I will be focusing my podcast interviews on fellow sufferers and their stories and LDUK’s #WakeUptoLyme campaign to help inspire and motivate people to keep raising awareness on the disease over the whole month of May. You can listen to my podcast Chronic but Iconic on Spotify & Apple Podcasts. LDUK’s Co-Founder and Chair, Natasha Metcalf, and Press Manager, Julia Knight, will be appearing as podcast guests very soon talking about all the hard work that goes into Lyme Disease UK. You don’t want to miss their amazing interviews! Natasha’s podcast interview will be out 9th May. It is an amazing interview really highlighting all the hard work that goes into the charity. Thank you, Natasha, for being so open and it was an honour to have you as a guest.
Once again, remember dropping leaflets, talking to friends and family really does bring about a lot of awareness… more than you might think. Get involved, get your family involved and most importantly, have fun, make memories and be proud of all the awareness work you are doing.
To finish I would personally like to thank the whole LDUK team for their amazing support. They are my second family and I love and adore them all so much. People forget how poorly we all are, and we are volunteers who work around the clock to offer the best level of support possible to the Lyme community as well as endeavouring to protect and save as many lives as possible with our message and work. Thank you, Natasha, for inviting me to be a part of this amazing, strong team. I love every minute working with Lyme Disease UK. You have helped me re-discover myself and find purpose in life again. I am forever grateful.
We all know that support is key. Support is the life-line we all need to keep fighting mentally and physically. Some of us are extremely lucky and have a strong, circle of people buoying us up. For others, our Online Community is their main source of comfort and support. Nobody should feel guilty or embarrassed for needing extra support and love from people in order to keep fighting this difficult battle.
With health issues come many complications and especially with an illness like Lyme which is still widely misunderstood. Friends and family members can struggle to come to terms with our health problems or fully understand them. We shouldn’t feel upset by the fact that we feel some of our cloest friends are within the Lyme community and online. It doesn’t mean we love our family or our friends any less but the quote, ‘You don’t get it ’til you get it’ rings true. Often, we need to talk to people we can relate to and seek out stories we can find comfort in from those who can relate the most. LDUK prides itself on offering the best level of support we possibly can.
When I put the question above to the LDUK Community, I knew there would be some heart-warming responses and I was right. The answers are solid proof of how key support is but also how inspiring our Community is and those that care for us. The friendship and support our members offer others when they too are struggling with their own battles, is truly inspiring. I see it, day in day out when people who are crying out for some advice, help and support post upsetting messages to the group and people dedicate time to give detailed and sound advice.
So, grab your tissues and take a read of some of the responses that the LDUK Community shared with me:
‘My neighbour and friend Emma Eeke took me to Ireland to see Dr L last October and without her, I could have never made the journey.’
‘I was so moved when a few of the mums at my children’s school ran a stall at the school fair for LDUK. I always felt Iike I was the rubbish mum who couldn’t give lifts or have other children over for tea and couldn’t believe that they’d planned it between themselves to support me and the cause. Still makes me well up!’
‘My cousin comes with me to my Rife treatment. It’s a 4 hour round trip every two weeks! Also, gotta give my husband a bit of credit because he helps day to day.’
‘This post has given me another flashback about the group! A friend of a friend’s child was bitten on holiday in Cyprus a couple of years ago. I posted on the group to ask for advice and Ioylia Gregoriou offered to meet the family and take them to see a local doctor while they were out there. Couldn’t believe it! So kind!’
‘I have a friend who will come and pick me up so that we can go for a walk or have a cuppa or something. She knows that the driving wouldn’t leave enough energy for doing anything else so that means a great deal and I value getting out in the countryside so much. I have to give full credit to my husband too. He can be a bit thoughtless sometimes, but who can’t!? But he copes with the constant change in my abilities and we’re working hard on communicating to make sure we are both being understood and helping one another. It’s important to me that he isn’t unhappy because he thinks he should drop everything to look after me, but his understanding means the world, as I’m not sure I understand it and it’s happening to me!!’
‘When I was struggling to get any kind of diagnosis and getting increasingly ill, a lady who’s only really an acquaintance offered to come to the doctor with me and pretend to be my mum as she was worried, I wasn’t being taken seriously! I didn’t take her up on it, but at the time I wasn’t getting anywhere and my real family (other than my husband) were suggesting I should just “adapt to the new normal” and kept reminding me “how grumpy I’d been lately,” so this meant so much. It may also have been what prompted me to drag my husband along to appointments.’
‘I’ve been struggling to write this as it’s hard to put into words. I have one person who has been there for me through my Lyme journey. The amount of love and support is indescribable in both the big things and the little things every single day. It is incredible. I’m so grateful to have this person who is there with a fully open heart even if some days are really challenging, or even if they’re better days, or if I’m short fused or just plain wired! Aside from taking me places, all that really truly mattered to me was the depth of humanity and empathy, kindness and love – the giving of friendship and not just taking. Showing me I’m never fully alone wherever, whenever, however.’
I hope the comments above make you thankful and grateful for the people who add sparkle to your lives, a shoulder to cry on and who are simply there through thick and thin. I also hope it inspires you to lend a hand or an ear or provide a shoulder to cry on for someone else. Remember, small acts go along way. Just a simple text or a hug could brighten someone’s day more than words can truly explain.
Once again, thank you to all the people who shared their stories, experiences and heart-warming comments.
Keep fighting strong, sharing, feeling and spreading the love.
We are experiencing the hottest February on record in the U.K. While we all want to make the most of it, we must be aware that when the weather heats up, the chances of being bitten by a tick increases as well. Many of us are all too familiar with tick bite prevention methods which is so positive but sometimes educating others is more difficult as they may believe that Lyme disease ‘will never happen to them’ and that a tick bite is no big deal. We never want to come across as a nag but we do have a duty of care to educate other people as much as they will allow us to when it comes to tick bite prevention methods.
It is always good to lead by example. By practising prevention methods religiously, they become second nature and any children in your family will soon pick up on their importance.
Remember, just talking to a parent in the school playground, or someone in your local supermarket about prevention methods can go SUCH a long way when it comes to protecting and saving lives.
Hopefully with all of our collective hard work, more people are becoming aware of the dangers tick bites pose and the importance of prevention techniques.
I asked our Online Community whether tick bite prevention techniques are being carried out by both members and their family and friends and if not, why not:
‘I think this is a really hard one as knowing all the risks my family don’t always take it seriously – I’m not sure why. I’ll have to ask them!’
‘I’d like to know what precautions to take while gardening. Are people careful every time they go outside and cut a plant back etc.?’
‘No-one really believes it can happen to them.’
‘Not only did I think it could never happen to me, I had never heard the words ‘Lyme disease’ until my doctor told me !!!’
‘I think most people presume they will spot a tick, unfortunately.’
‘I mention it to everyone I know, meet and like (i.e. not EVERYONE). I don’t recall anybody being too interested.’
“Be aware of the symptoms;” a seemingly inglorious attempt to encourage them to educate themselves.’
‘Some do, most don’t. You don’t get it until you get it. I think most people just think I’m being hysterical.’
‘Assuming I’m able to go hiking this summer it will no longer be in my previous garb of floaty dress and hiking boots. I knew nothing of this illness until I got an equivocal ELISA (followed by +ve Immunoblot test) after having been increasingly unwell for over a year so. No precautions taken back then – I’ve bought my first pair of trousers this century hoping to be out and about but covered up come summer.’
‘I stay indoors now’
‘The sad thing is for me since I go on about Lyme most days on my news feed on social media, my friends have sent me pictures of rashes, not only of themselves or children, but of their friends and family too. I always give good advice and they seek medical attention and I stress to them the requirement of antibiotics and blood tests etc. I’d like to think I’ve saved a few families the heartache I’ve had to suffer from as a result of my Lyme experience.’
I think it is far to say that there is plenty more awareness work to be done. There is SO much more we can all learn and share and keeping the conversation going about Lyme is vital.
REMEMBER, keep safe! The height of the tick season is fast approaching. Here are the prevention methods you need to be taking and sharing with others:
-Wear long pants and long-sleeve shirts when in the outdoors.
-Make your yard unfriendly to ticks by clearing wooded areas, keeping underbrush to a minimum, and putting woodpiles in areas with lots of sun.
Having to cancel plans on a regulalar basis is something people with a chronic illness often have to do, much to their disappointment and to the disappointment of others. I decided to ask our Online Community how they explain to people when they have to pull out of an arrangement to meet up.
‘Having to cancel plans is horrid. I often end up feeling both guilty and also angry with this frustrating illness. Then I end up feeling lonely and sad that I’ve missed out, again!’ It depends on who the people are but I generally keep it quite brief. I just explain that I’m not up to it today but that hopefully I will be next time. I also try to forewarn people so that they understand that I may have to pull out at short notice because of illness and not because I don’t want to be there.’
‘I am lying in bed having just phoned a friend to cancel her coming over for a coffee this morning. I am housebound. I am lucky as my friends all understand yet even after 19 years, it still makes me feel very uncomfortable.’
‘I have accepted this is how my life is. Sometimes I can have a visitor without warning and other times, I cannot. I’m past the stage where it makes me feel guilty as there is certainly no room for guilt. I’ve got enough emotional stuff to cope with.I do not choose to be so ill so there’s nothing to be guilty about.’
‘I started thinking of my answer and I realised that I still don’t know the best way to cope with this. I have lost friends over this, as they just didn’t understand why I cancelled plans. Particularly friends with kids; they tend to despise when I say “I am exhausted“, because I don’t have kids… so surely I don’t know the meaning of the word “exhausted”, unlike them.’
‘I don’t make plans anymore. My boyfriend told me the other day, “You never want to do anything” and it broke my heart. It is a mix of tiredness and anxiety, which means I hardly go out anymore. It breaks my heart because I want to go out with my boyfriend, meet up with my friends and go out shopping etc but I am not in the right state, mentally or physically.’
‘My answers vary depending on who it is. With some people, I make up excuses and with others, I can tell the truth because they have a chronic illness too and so they understand.’
‘The sad reality is I’ve stopped making plans so I don’t have to cancel’
‘I don’t cancel I always go and then spend the next few days, or more, ill in bed, I always put a brave face on as none of us know how much longer we are on this earth for.’
‘I no longer make plans. I just decline everything these days as it makes life easier.’
We all want to live life and enjoy it, to be around amazing company and interact with our friends. It is far from easy when you live with a chronic illness to go with the flow, feel up to going out and meeting people and it’s even more soul-destroying when you have to cancel plans you may have spent days, weeks or even months looking forward to. Often it is the guilt that eats away at you the most. You worry that your loved ones will stop inviting you, forget about you and won’t understand your reasoning for cancelling or your illness.
There is no easy way to make this question hurt less. We have all be burnt by the painful emotions that come with cancelling plans, missing out and upsetting others. We don’t mean to upset others and we feel wracked with guilt. It is difficult to be at peace with our responses. It becomes easier to stop making plans, to stop seeing and in some cases even speaking to friends because we don’t want to hurt them anymore and we don’t want to bring ourselves anymore stress and upset either.
We forget that the people who are family and true friends will always understand as best they can and that they will work around us to be flexible and won’t get offended. We must try to be open and honest with people and be respectful towards ourselves and our circumstances. We don’t cancel out of spite or cruelty. We are listening to our bodies and respecting what our bodies are telling us.
We must try to think about how friends and family would act in your situation. There is no doubt that they would cancel if they were feeling unwell and not really think twice about it. They would know their body was not well enough or that the event was just a little too much for them to handle. That is how we should all look at it. We wouldn’t be mad at our friends and family for cancelling on us, because we KNOW and understand what it is like being in that situation, all too well. We wouldn’t want them feeling guilty or adding to their upset and people who really care will feel the same about you.
Some tips and advice that may help:
Ensure everyone you make plans with knows exactly how you are feeling (mind and body). Express any anxieties, any pain and what symptoms you are experiencing so they know exactly what is going on. It is only fair to them.
Express that they may have to be flexible depending on your symptoms on the day of the arrangement. This will prepare your loved one that you may be late, have to leave early or change the plan slightly.
Let your loved one know as soon as you know you will have to cancel. This will give them time to go out with someone else, work out another plan or reschedule.
Offer alternative ideas. If you can’t go out for dinner maybe suggest that a quick coffee or a night in watching a movie would suit you better.
Listen to your body and your heart. You know when you can’t and shouldn’t be committing to a plan. You know when you need to cancel. Don’t let the guilt take over or push yourself to please others. The people who matter will always understand and if people do start being cruel, then they aren’t true, understanding friends. You are doing the BEST you can, given the circumstances.
There are no rules. Living life isn’t defined by how many times you leave the house, how many holidays you go on or how many events you attend. You define your life and your legacy. As long as you do as much as you can and always give your best, nobody can ever expect anymore from you. The people who matter will always be our cheerleaders; there for support and they will add sparkle to our lives.
Don’t feel guilty for listening to your body. Take it as a great strength that you have mastered the art of listening to what your body has to say. Congratulate yourself on being so strong and don’t punish yourself.
The responses really did break my heart. I am so proud of the brave people who shared their answers with us. Thank you! You are all so strong because even though the answers meant plans were cancelled due to health reasons, you have begun the process of understanding that YOUR needs are important and that the people who matter will work with you and not against you. You have NOTHING to feel guilty about. So, I thank you for helping to show others that cancelling plans can be a strength, not a weakness.
I was like so many of us, I didn’t spot a bull’s-eye (or EM) rash which is confirmation that you have contracted Lyme disease. I came down with a fever in a foreign country where it was easy to become poorly due to food, the change in climate and the germs. In a case like this, you don’t connect the dots. You believe what the doctor has told you and that you will just have to pop a few pills, rest in bed for a day or two and you will be good to go. You never question or think twice about it. They are the professionals after all.
Awaress of Lyme disease has improved so much in the last 12 months alone due to our collective hard work and with more celebrities speaking out about the issue but there is still a huge lack of awareness. Many medical professionals and members of the public are still not fully aware of what to look out for when it comes to Lyme disease and how to connect the dots in order to reach a diagnosis. Lyme Disease is complex and it’s often comes with a cocktail of other horrible co-infections which makes it even harder to tease apart, diagnose and treat. I asked our Online Community what they felt triggered their illness if they did not become sick immediately following a tick bite. The answers prove how hard it is to pin-point the tipping point where the immune system can no longer cope. Lyme disease can manifest itself in many different ways but common symptoms often include:
We go to the doctor with these symptoms as and when they crop up and so doctors tend to send patients to different specialists relveant to the most dominant symptom at the time. Patients may go to the doctor complaining about headaches but fail to mention muscle and joint pain, fatigue or food intolerances and the doctors may not ask whether there are any other symptoms present. The problem is, people aren’t connecting the dots and zooming out to see the overall picture. Instead, people are being treated separately for individual symptoms and this can result in band-aid treatment which fails to get to the root cause. When the band-aids fail, patients become more upset, scared and angry that nothing seems to be alleviating their suffering.
Once you begin to connect the dots, it is often too late for a quick fix. The window for early Lyme disease treatment has been missed and people have to seek private treatment which leads to hefty medical bills. It is so important to keep sharing the constellation of symptoms that Lyme disease can cause to make people aware of what a multi-systemic disease this is. Keeping a symptom diary can be a very useful way of tracking all the changes you are experiencing as one of the hallmarks of the illness is fluctuating and migratory symptoms.
Thank you to everyone who was brave enough to respond to this question in our Online Community and sharing your experiences will encourage people to look at their symptoms in more detail and to take the body’s warning signs seriously.
The LDUK team works around the clock to arm as many people in the UK and abroad with information about the disease, prevention methods and signs of the illness. Prevention is currently the best cure.
Here are some of our Community members’ triggers following a tick bite as Lyme disease does not alway manifest straight away:
‘Amalgam fillings and stress’
‘Running marathons and a stressful life event’
‘Having a swathe of vaccinations to go on holiday to South East Asia. I am not against vaccinations in principle but the illness came back with a vengeance following the immunisations’
‘Stress, vaccines and a gut infection in India seemed to finish me off’
‘Stress and a knee replacement. I’d had a tick bite 4 months earlier’
‘Vaccinations ahead of a trip to Africa completely floored me’
We are always here for support at LDUK, and our Online Community is a hub of support where people share their symptoms, experiences with doctors and people help one another. Never feel alone, never feel alienated by the symptoms you are experiencing. Don’t feel afraid to speak up or to share. Other members may be able to relate to what you are going through or offer sound advice that could be life-changing for you.
We are all here together, navigating our way through this complex challenge and you aren’t alone.