As a helpful resource in any chronic illness guide England, this book helps you navigate support and costs.
Ask About Travel Costs Before Your Appointment Under the NHS Healthcare Travel Costs Scheme, some eligible patients may be able to reclaim reasonable travel expenses for specialist NHS treatment or diagnostic tests. If an eligible patient cannot afford to pay for the journey in advance, an advance payment is sometimes possible. This is not guaranteed and depends on individual circumstances and applicable requirements. Ask the NHS service providing your treatment or the relevant Integrated Care Board about possible support before you travel. Discover more practical guidance in my book "England Edition Page Turn".
My MS is the starting point of my story – A chronic illness guide for England
Navigating Life Beyond a Diagnosis: Your Chronic Illness Guide England
But a chronic illness changes far more than the body—and many experiences connect people regardless of their diagnosis.
I describe how I have found my own way: how I deal with lost abilities, difficult and sometimes absurd situations, lack of understanding, relationships, and the need to accept help. It is about dignity, self-determination, and not losing yourself despite all the changes.
My solutions are my personal solutions. They have grown out of who I am as a person, how I think, feel, and deal with my life. I share them because something that has helped me might give another person a new perspective or help them find their own way.
At the same time, the book provides practical information about social, financial, and other forms of support available in England, and how important it can be to know what help is available and use it thoughtfully.
A diagnosis changes your life—but it does not define who you are.
TABLE OF CONTENTS
1. From Professional to Patient
The Turning Point — 3
Fatigue — 6
The Diagnosis — 8
Suddenly Patient — 11
2. Professional to Patient
The “Get Well Soon” Trap — 15
When Words Become Softer — 17
Thinking Symptoms Away? — 19
The Optical Trap — 21
The Thousand Faces — 23
3. Understanding and Acceptance
Behind the Numbers — 29
MS & Time Distortion — 31
Word Jungle — 35
Urination — The Silent Taboo — 40
Bowel Function — 42
4. Therapy and Aids
Physical Therapy — 47
Occupational Therapy — 49
When a Rollator Became Freedom — 52
The Illusion of Having a Free Hand — 54
5. The Bureaucratic Barrier
Leaving Working Life — 59
Living with Disability — 65
Mobility and Costs — 73
Financial Reality — 81
When a Decision Does Not Reflect Reality — 90
6. The Soul and Social Connections
The Parcels in My Garden — 101
A Life at My Own Pace — 107
When Strength Runs Out — 113
The Sieve of Friendship — 116
The Tides of Memory — 118
The Summit View — 119
Disclaimer — 123
Afterword — 127