“I started feeling unwell in 2014. It took me about 2 years before I was diagnosed with Lyme disease then a further year to discover other co-infections that I was suffering from. The co-infections came to light as I wasn’t fully responding to treatment for Lyme disease alone. I was very sick and felt like I was on my death bed many times over and that’s not an exaggeration. Name that symptom, I had it!
I was totally exhausted and had no energy. My symptoms included: flu symptoms, excessive sweating, pupils not dilating properly, fast heart rate and severe fatigue. I felt poisoned daily, had a permanent feeling of having the flu, sore painful joints, muscle twitching all over, nerve shooting pain, feelings of depersonalisation, feeling numb and detached. My vision was disturbed, wall paper and patterns on the floor used to move about and lights were too bright. I lost the ability to walk and my legs would vibrate like painful ants crawling in them and electricity type shocks. My symptoms would change hourly, severe stiff and painful neck, passing out with low blood pressure and hospital admissions, vertigo, nausea. I also suffered with migrating pains and heart issues. My heart would race double time for days on end (misdiagnosed as a panic attack). I later discovered that my neuro issues were from the disease in my brain creating inflammation and all these weird symptoms.
I thought I had some mysterious disease that no one had ever heard of. I was once an athlete and now had zero energy and chronic fatigue.
I consulted with 15-20 plus private doctors who could not find out what was wrong with me. I felt that I had no option. What else can you do when you’re sick you have to find out why? You have to help yourself! Who wants to live in their bed every day with all those symptoms. That’s not living, it’s existing!
I was terrified and ill. When I explained my symptoms nobody could seem to piece them all together. They thought Addison’s disease, and funnily enough Malaria was on their mind at one point but as I hadn’t travelled anywhere it couldn’t be that. No one ever suggested Lyme disease.
Support from Lyme Disease UK
I found the Lyme Disease UK Online Community after researching Lyme disease and hearing about it on tv. Suddenly everything made perfect sense and within seconds someone reached out to me. It was such a relief that at last I had found a group for emotional support. I could talk to others with the exact same experiences and similar bizarre symptoms as myself and I suddenly didn’t feel so alone anymore.
Lyme Disease UK gave me support 24 hours a day if I needed it. They provided me with leaflets that I could give to my local GP surgery, free of charge. When I felt low, I knew I could always count on the Online Community for support or information.
I am a frequent visitor to the LDUK Online Community and vowed if I was ever in the place to pay it back somehow, I would. Every day I check to see if I can add a comment to someone in need as that’s the support that was given to me and I will be forever grateful. Without the LDUK Online Community I would have mentally struggled to cope with all the symptoms I had. It is bad enough being sick but sick with something no one seems to know how to treat or help you is an utterly terrifying position to be in. No one should be left in this position.
If it wasn’t for the support from LDUK, my family, friends and obviously treatment I’ve had, I would have tremendously struggled as no one can understand how Lyme disease actually feels unless they have had it. Some people think it’s just feeling a bit tired and sore. As you can see by my symptom list it’s so much more that that! It’s a battle of existence everyday. You have to keep just having hope and reach out to people for help.
Life after Lyme disease
I’ve lost many friends during my time being stuck in the house. It’s been a lonely very sad time indeed. I know how people can suffer and feel alone and I don’t want anyone to feel like I did. Unfortunately we all find ourselves in the same position those that have late stage disease but then that’s why we all make an instant connection with members of the Online Community as we all have similar stories. It’s like a mini family.
I’m not quite in remission from Lyme disease yet as I seem to relapse every so often and find myself back on some sort of treatment plan. Not all the time, just periodically and the last time was after I caught a virus.
I’m still battling to get my life back. I’ve missed a lot of years but I’ve found something I can do at home now and that’s progress.
I’m better than I was in the beginning far better and for that I’m very thankful. I still continue to heal every month that passes, I’m very grateful to the admins and regular members of Lyme Disease UK Online Community.”
Lorraine recently set up an online business, Statement Jewellery selling beautiful, gift boxed, sterling silver jewellery. Lorraine is kindly donating £1 of every sale to Lyme Disease UK. You can check out Lorraine’s online shop on Facebook. Thank you so much, Lorraine!
