With Hindsight : Things I would say to myself when I first got ill.

1. You are very seriously physically ill.
2. Do not easily trust anyone. Trust needs to be earned and genuine knowledge and respect demonstrated. 
3. Do not push yourself too hard or ignore your symptoms, thinking they will go away.
4. Neither give up everything completely unless it is necessary, because once given up it is unlikely to easily return.
5. Make sure that the prejudice, ignorance, laziness or incompetence of others do not stop you from getting thoroughly investigated medically. 
6. Make sure that your symptoms are thoroughly investigated, incase you have something rare and treatable or not so rare and overlooked. If possible and reliable, get tested for other rare diseases, Hypothyroidism, Adrenal insufficiency, Pituitary damage, Lyme disease, mitochondrial disease, Periodic Paralysis, Anaemia, allergies, B12 deficiency, Vitamin D deficiency, any others relevant to your symptoms. They are not ME.
7. Do your own research to understand what might be causing the symptoms.
8. Make sure you get all the medical test results yourself and go through them to check they have been properly interpreted.
9. Trust your body. It knows what it needs.
10. Rest if you can, but move when you can too, so you do not deteriorate further. Learn what works for you. Rest may just be trying to avoid over - stimulation.
11. Take away as much stress from your life as possible, it uses up energy and can cause you to deteriorate. Stress can be emotional, mental or physical, can be internal or external environmental stress upon you. The illness itself is a stress on your body. 
12. Change the way you live, in order to protect yourself from more harm. 
13. Do not see people to please them if you are too ill to see them.
14. Be aware that anything you do has a post- exertional response, causing increase in pain and other symptoms and take this into account.
15. You can be harmed by well meaning but ignorant practitioners, doctors, treatments, medicine. Make sure people listen to you and understand your experience.
16. Make sure you take care when trying new medicine and introduce it slowly to check for negative reactions. Normal doses may well be too much for you, at least initially.
17. Pay for private reliable tests if you can afford them, but make sure they are safe and reliable, knowledgeable practitioners and relevant to your illness.
18. Do your best to make sure you are properly tested and the tests done properly so that you can rely on the results you are given.
19. Taking supplements for deficiencies will help you, but it may be slow and you may not always feel the benefit for a long time or only gradually.
20. This is an illness that has taken over every system and part of your body, including your brain. You will not get an accurate picture sadly from the National Health Service. It may never leave you despite being told you will recover for no reason, with no appropriate medical input.
21. Avoid the psychiatric pathway. It is based on denial of your physical illness.
22. Be accurate about your descriptions of how ill you are. Make sure your whole illness is  represented accurately, not misunderstood because it may be invisible from the outside.
23. Never give your power away to other people. You know how ill you are more than anyone and you need to figure out how to cope moment by moment in the best way for you. No one can know that better than you.
24. You can get unbearably worse. No matter how ill and severe your symptoms are, they can increase indescribably, therefore be very careful to protect yourself as best you can.
25. The environment is a danger to you and you need to take as many protective measurements as possible to avoid harm and unbearable exacerbation of symptoms. 
26. The name of your illness is important. Make sure that the correct illness interpretation is attached to whatever label you are given. ME is a neurological disease. CFS is  an umbrella term. Many people use different criteria to supposedly identify your illness. They are not all reliable, safe or accurate. Know who you are dealing with and what they mean, when they use the term ME.
27. You need biomedical interpretation, respect and treatment, not psychosocial misinterpretation.
28. ME is not fatigue; you have many serious symptoms that are nothing to do with fatigue. Be very clear on this.
29. With ME there are many losses, many hoped for things are lost and left behind.
30. You have to live in a new way. There is no quick fix.
31. Stay hopeful, but realistic.
32. You are going to have to become your own expert.
33. Detoxing can make you more ill. Approach with caution and awareness.
34. People will not understand and friends will desert you over time.
35. This disease goes on for decades. You have to adjust to this.
36. Developing inner strength, awareness and focussing on love will help you survive.
37. You have to find a coping mechanism for the extreme symptom experience, moment by moment
38. Never let despair win.
39. When you need care it needs to be done in the right way. This is not easy to learn and the level of sensitivity and flexibility required is immense.
40. If people are to engage with you, it has to be on your terms. This makes external demands and expectations very difficult to deal with. You have to make sure that you are not harmed.
41. You need to stand up for yourself at the end of the day, however hard that is.
42. You need to try and make sure that you do not get misinformation and psychiatric misinterpretation of your illness on your medical records, by ensuring the people you see are safe and genuinely understand ME.
43. Getting a good GP is paramount, one who understands you have physical illness and is willing to work with you.
44. Identify your symptoms and understand how they interact and affect you. Learn what might alleviate or ease them, temporarily, if at all.  
45. Find a safe, reliable, respectful biomedical practitioner who can interpret your illness experience and make safe, relevant recommendations. There are very few in reality. Do the research yourself or with help you can trust, before you get harmed or wrongly treated or misinterpreted.
46. You are going to have to be patient and flexible in every moment. Nothing is going to be simple, straight forward and definite.
47. You will suffer and struggle and not be understood. You are at risk of harm and serious deterioration, misinterpretation, misunderstanding and abuse, even by well meaning people. 
48. You need to learn to be resilient in your heart.
49. Your life is precious and you deserve better than you will get.

Linda Crowhurst


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