From the point of diagnosis until where you are at presently, you would have realised early on that you are no longer the same person you once were before the disease set in.
As difficult as it is to accept this shift, learn to embrace the reality of things and pick yourself up. Take charge of your situation once you feel you can stop grieving. There’s life still in you and all around you. We share from our own personal experience having struggled through this journey, both as patient and carer, and we can tell you that staying hopeful and positive is key if we are wanting to tackle this disease.
The mind can be a minefield given the physical challenges you now face and compounded by the cocktail of drugs you also have to take.
If you do not reign your thoughts in, you will become your own worst enemy. Learn to ask for help and accept the love and support from those around you. Allow the people that you trust to step into your seemingly bleak world so that they can help pull you up and out of despair.
Focus on things outside of yourself. Push yourself to participate in activities that you enjoy but at the same time, know your current limits. It is only when you take your eyes off yourself that you can see the forest for the trees. Life is worth fighting for. But if you are still indeed struggling, we are here to help. We are not medical experts but we understand and we will do all we can to be a friend you need. Contact us.
Despite the disease affecting your body causing nerve pains, low blood pressure, loss of appetite which then can lead to severe weight loss, acute diarrhea and/ constipation, impaired gastrointestinal motility, hypoglycemia, loss of sensation, insomnia and a plethora of other different manifestation, it is important that you do your best to keep healthy.
Diet with a high caloric count and some low impact daily exercise will allow your body to keep a balance and slow the progression of the disease. Muscle wastage can happen so being active and having a good diet will help decrease the progression.
Amyloidosis can cause fatigue and weakness, so the last thing you may want to do is exercise. Plus, cardiac issues can make intense workouts out of the question but this does not mean you have to stop moving completely. Low impact weight training, walking, Tai Chi and yoga are some good exercise that you may be able to do once you clear it with your doctor. By exercising regularly, you can help fight pain and fatigue related to amyloidosis. Exercise safely and get a workout buddy to help.
For us, abstaining from dairy products especially milk, and reducing certain gluten products such as wheat noodles and instead going for white rice have helped with the bouts of diarrhoea. Ultimately however, you must get adequate nutrition and should you struggle to eat no matter what, talk to your dietitian about meal replacement/ supplement food such as Ensure, 2Cal or Fortisip.
Reducing the amount of salt in the diet can help with swelling from fluid buildup in the body. With amyloidosis, your kidneys may not retain protein efficiently. Your heart’s ability to pump blood may also be impaired. Together, this can cause swelling, especially in lower extremities like the legs and feet. Talk to your doctor and ask what he/she can recommend to control water retention.
Incorporating multi-vitamins together with vit B Complex and B6 have helped in reducing Aubrey’s nerve pains. Taking green tea extract supplements would be the next step in combating the protein deposits in the organs as recommended by Aubrey’s medical practitioner. How one person reacts to food differs from another. The important thing is to remember that you must keep trying until you find that ‘food fit’ because ultimately, you must get proper nutrition through a balanced diet. This includes lean protein, healthy fats, fiber, and fruits and vegetables.
We would love to hear from you should you have questions about our journey with this disease. Go to our “Contact Us” page and fill in your details.