Throughout my journey with Chronic Lyme Disease, I have noticed how so many people experience difficulties in diagnosis or indeed, getting any support with the vast range of symptoms that they experience. Many people get misdiagnosed, are told they have a range of other auto-immune problems, or get referred for psychological assessment as they ‘must’ be experiencing depression and mental health problems.
A couple of weeks ago I had a follow-up appointment with my neurologist and also a new GP. Neither of them believed that Lyme disease can cause such extensive issues apparently (!!) so they both prefer to go with the neurologists list of Central Sensitivity Syndrome, Fibromyalgia, Chronic Fatigue / ME, migraine, etc etc etc.
What’s in a label?
Regardless of what label they give me, neither of them could offer any suggestions what-so-ever as to what else I could do to get fully well, other than offering a cocktail of painkillers and anti-depressants. So I continue with my own plan with my food as medicine and my weekly targets.
The most frustrating thing I found with the medical appointments was the lack of listening. Doctors have a limited time for patients and I am sure we all understand that. I am saddened though that in that there is little empathy or curiosity as to how they can help solve problems for patients with autoimmune diseases. The system keeps us all locked in this pattern. Doctors overworked, patients frustrated and painkillers and anti-depressants on offer in abundance.
Getting back to health
Living in constant pain and debilitation for over 2 years is a challenge and a skill set I never imagined I would have to learn and master, but I have.
What I have realised is that there is little help for people to know how to keep their mental health intact whilst going through health challenges and seeking improvements.
Concentrate on yourself
The most important piece of advice I can offer to people is to concentrate on yourself. How you feel, what helps and what doesn’t. We are all unique, so what works for one might not for someone else.
Look at your diet. Cut out inflammatory foods such as gluten. Cut back on dairy and sugar as much as you can. Eat organic wherever possible to avoid the pesticides and chemicals on other foods. Monitor what you do each day and what you eat so you can find patterns of what makes you feel better or worse. Look at taking appropriate vitamins and supplements to boost your system.
Track the number of steps that you do each day and find your platform. Work out how much you can do that doesn’t deplete you over the following days, then gradually increase what you can do each week. Include some simple stretches, meditation and find ways to relax. Do things that give you some joy without over doing things.
It is like learning to do things again but by tracking what you are doing, setting realistic goals for gradual improvement whilst you concentrate on putting the best nutrition and fuel into your body will allow you to steer yourself to better health. Doing that is much better than spiralling down into a low mood.
Let go of the reliance on others being able to fix things and take control of it all for yourself. Take their advice and get those that love you to support you in your journey.
I know changing what you eat and how you approach your days and weeks can seem like an impossible task to start with. If it is, concentrate on one thing and get success with that, then tackle the next thing.
Whatever label you are given, take control for yourself and you can chart your way to improvements and back to health.