- 26 Feb
Living with Lyme and Auto-immune Disease
Having experienced several months of tests, hospital visit after hospital visit, MRI scans on my brain and spine, yet more tests with various specialists, I have finally got a full diagnosis in my second year of ill-health.
My base problem is Chronic Lyme Disease, followed closely behind by Central Sensitization Syndrome, Fibromyalgia, Chronic Fatigue / ME, Migraine, with high markers in my blood for Epstein Barr, Pneumonia and a few other things and with an immune system that isn’t fully functioning anymore. And I am still waiting for yet more results.
The last year has been an experience I never thought I would have to go through and is something that I would never wish for anyone.
Finding a remedy
Unbelievably there is no cure for all of those things. Lyme disease and autoimmune diseases remain as illnesses that have no cure. The medical profession, whilst working extremely hard, offer medication to help with the symptoms, but no cure. Research seems limited in these areas. If I want medication for the pain, I can get it. What I can’t get is what I want – and that is a cure and my life back.
Reading the list of symptoms of Lyme Disease does nothing to prepare you for the experience of it. It isn’t terminal, but it is excruciatingly painful and debilitating on a daily basis.
Constant pain in muscles, joints and neck, a burning sensation on the inside of legs, hands and arms, tingling and numbness, headaches, sore throat, chronic fatigue, inability to sleep, memory loss, blurred vision, brain fog, inability to concentrate, exhaustion, pain during any kind of physical exertion, and for a lot of people – depression. All of that rolled up into one very unhealthy package.
I, and others with such illnesses, still look well. We get told all the time ‘you look so well I am glad you are better now’. But we are not better – we just look ok. You just can’t see what we are experiencing and trying to deal with on the inside.
Living with Lyme and Auto-immune Diseases
Lyme and auto-immune diseases are difficult to detect. Many tests are inaccurate. It takes a long time to get a diagnosis.
Initially I felt relieved to be given the long list of what was wrong with me after months of tests for other things coming back negative. That relief soon turned to despair when I realised there was no cure on offer.
It is really difficult for others to understand and even harder to live with in the experience. And with such debilitating illnesses and constant pain, it becomes very difficult for family and friends to live with it too, as they feel so helpless. Those that love us just want to take away all the problems and pain. But they can’t.
The truth is, no one can take it away.
When I started 2015 I could swim 50 lengths, go for long walks, work 12 hour days and was able to fully engage, concentrate and love what I was doing.
Towards the end of 2015, I was unable to work, not concentrate for longer than 10 minutes, not able to drive and on some days, in utter exhaustion and barely able to walk.
Changing my path
In February 2016, I have come off the anti-biotics and medication as it was making me worse.
As I approach the end of February 2016 – I just want my life back. I want the pain, exhaustion and headaches to stop.
In 2016 I want to find a way for all this to stop.
In 2016, I am going to chart my back to better health.
That journey starts now – I don’t know what it looks like but I am determined for it to be a successful one.