Living With A Lymie In My Life - Help.
Lyme disease is a new threat that is spreading like wild fire throughout our society. Your friend or loved one my have recently being diagnosed and you have sadly watched their health over time, often years deteriorate.
How can I help? You say.
I have no knowledge or have even heard of Lyme disease before?
here are some pointers you may find useful.
1. We aren't bipolar: many Lymie's are going through a lot. Their whole life's are being effected and they are quickly having to learn to adapt. On top of the stress of coping with the pain and symptoms. If they are laughing one minute but then crying and angering the next, understand it's most likely not your fault! Your loved one has just got a lot on her/his plate. In this situtation it's best to just give them a hug and let them know you are there. Asking them to explain can often lead them to become more flustered because they don't know where to begin explaining. Just know they will talk when they feel they are able and want to.
2. We aren't fussy eaters; believe you me we would eat everything on your plate if we could as we look down at our bare plates. Just put yourself in your loved ones shoes. When you already feel like you have been knocked down by a van and then reversed over do you really want to heighten your symptoms through dietary choices that could really effect their treatment plan as well as their overall health. I don't think so.
- I want to get food/cook or know what to to suggest to my friend?
Lyme suffers must avoid refined sugars, wheat, gluten and dairy. As a must.
Refined sugars are so processed and packed with toxins. These toxins confuse the immune system meaning they begin to attack the body. The bacteria and parasites also feed and reproduce off sugars. We don't want more nasties do we? So offer plant based sugars; stevia, trivia or whole earth.
Wheat & gluten are both dangerous for a Lyme suffers. Wheat because of its high glucose level is amazing energy food for the bacteria and parasites to feed on. Gluten is a toxin to the body and due being unable to be broken down by the body causes a large amount of inflammation. Extra inflammation within the body causes - you guessed it, heightened symptoms.
Luckily there is a growing Free From range. You can now get cakes, wraps, breads, cereal bars, cereals and much more. Check out this aisle in your local supermarket.
Dairy is also known to cause inflammation. How you may ask? It's a natural source. It is you are right but what do livestock feed on? Grains! Grains containing wheat and gluten that are then digested within their bodies passed on to their 'end' products. We then have the process of pasturation adding unnatural substances to the milk. Again there are many milk and dairy alternatives out there now; dairy free cheese sauce, dairy free spreads, dairy free cakes, nut & soy milks plus many more.
Lymie's are intolerant to many foods, chemicals and materials. It's best to take an interest, write them down and be aware of them. This will really help when you are out with your loved one. You can then stand up for them if needed and/or share your own fab new knowledge with new products you have found. Your understanding and gaining knowledge puts them far more at ease too! They will feel comfortable coming out with you and will know they are in save hands.
Some more food tips;
- never add ice - risks of ecoli are too great. Your loved one's immune system is already suppressed they may not be able to fight to virus. Leading to them being very poorly.
- avoid cheap oils - highly refined oils are jam packed with toxins these toxins a well person's body can't break down let alone a very poorly person. If you can purchase coconut oil , a higher range oil ( rapeseed ) or cook without oil. Avoid vegatable, palm and sunflower oil at all costs.
- check labels!! I can't stress this enough! They may just look like plain, uncoated nuts for example but do they contain oil? Check.
- wash your vegs and fruits - pesticides and fertilisers are all toxins. Always rinse your good's well and buy organic if and when possible.
- if in doubt, simple is best - you don't know what is right or wrong but don't want to pester your friend? Boil, steam or keep things raw. Stock rice and potatoes. Then you can add these to steamed veg and salads! They are fast to boil and will mean you loved one has something filling to eat.
3. We zone out - my friend just simply goes quiet. Am I boring them? No, definitely not. They are grateful for your company. Though use this as a positive and a useful sign. Your loved one has now hit a wall, whether it has been caused by exhaustion or pain they are now struggling at the event. At this point it's best to ask if they are ready for home and if possible escort them home or ring someone who may be able to help you take them home. If they insist they are ok and you yourself want to stay a little longer, strike a deal to just do another half an hour or something a long those lines. Make a conscious effort to make more conversation so your loved one can have a rest.
4. They always cancel on me! We don't want to turn you down or cancel. When you are suffering with different symptoms everyday, different levels of tiredness and anxiety it is often difficult to commit to events. We are unsure whether we can handle 3 hours for example. We don't want to look uncool and will always try to push ourselves but at the same time we don't want your time and experience to be affected. Knowing we will struggle leads us to feel we will be a strain on you, so decline. Discuss with your loved one why they decline or cancel. That way you know why and you can be more flexible with your event choices. So it may be that plans are too far from home for them, so meet at a cafe closer. It may be because the event covers the whole day and your loved one can't rest, stick to events that are a max 3 hours. There are many more examples but you get the drift.
5. It's not our choice - we aren't lazy nor are we crazy. We had goals and dreams that have all been effected by the disease. Just because we aren't doing 24 hours of sport and working 9-5 doesn't mean we are lazy and it's not simply in our heads. Nobody would just throw away their dreams after years of hard work and go from running around like a headless chicken to bedridden. It's fair to say our treatment plans become a full time job and boy the fight is the hardest task we have ever been faced with. A week's worth of sports training, ( the energy used, muscle weakness, stuffiness, pain and sickness ) in just one day. How exhausted would you be? Yes I do have to rest a lot. I still fight hard and have goals and dreams that drive me everyday.
6. We become the best actors and actress. We don't want to be the Debbie downers so we will smile and laugh through the pain, joke about our pain and try to ignore the symptoms we are experiencing. We know we are a huge strain on our loved ones and so try to be as positive as we can as we live with that guilt. We may be smiling, look presentation, have turned up and be talkative but this will wipe us out for hours and even days.
7. They looked heailther, why are they still sick? We can't simply wake up and be A ok. Our healing journey is a long, long one and we may make steps forward in some areas and fall back in others. So don't be surprised if your loved one looks fine but are secretly struggling. It's always best to check in, before assuming. Understand that once Lyme becomes chronic it is an illness the person unfortunately will harbour forever. You have to know they will face break through's and relapses.
8. Educate yourself! Your loved one will love nothing more than for you to understand more about what they are going through, the hell, what they require and overall knowledge of the disease. They will rely on you more, be more open with you and feel comfortable going out with you.
9. Remember the finer details. Bringing a long a hot water bottle for their stomach pain, extra cushions/pillows, stocking some of their snacks. Little things like this makes your loved one's life so much easier! Reducing stress and anxiety! They will appreciate you efforts greatly.
10. Read or watch anything they said you. They may send links to articles, YouTube videos, comments and so on. They want you to understand things they may personally not be able to explain properly. With videos they may also feel it's an easier way of gaining the knowledge they want you to know.
11. Understand herxing. The fun of herxing! This is a tough time for your loved one. They begin treatments that should make them better but at first heighten their symptoms as the toxins are drawn out of their cells and into the bloodstream for the immune system to attack and the body to break down. This process will happen with all new treatments; herbal and antibiotic and usually lasts a few days before subsiding. So please be aware of these times. Your loved one may require more support or more space. A discussion at the time is always a good idea. As the herxing process will also be different every time.
12. Symptoms may suddenly flare up. We may be fine and have it all under control one minute the next we are fighting off tears because it's all getting to much. At this time it's best to head for home, have a rest or take something to ease the pain. Have a coffee and try to remove the stress the flare up is causing.
13. Memory loss. This is a common symptom which you can help greatly with by documenting events. Whether that is throufg photos, cards with writing in about what happened, text messages and reminders.
14. Plan in advance. We can't simply just 'go with the flow' we have our diets, med's and pain to consider. Plans must be organised days in advance so we are able to get ourselves organised. And be constant, don't be the best friend one week and then disappear for months. Your loved ones will feel they can't rely on you and may distance themselves.
15. Be there for them through treatment. Whether it's the odd check in text or visiting them. It will mean the absolute world to your loved one and show them ( as actions speak louder than words ) that you are there for them.
16. Stand up for your loved one. Whether you stand up to a waiter about getting their food order wrong or to another friend who is being ignorant to their illness. Your voice your loved one will be so grateful for and they will feel more comfortable with you knowing you are there for them.
17. It's a lonely disease that is invisible but we fight together. Make sure if you want to support your loved one you are willing to fight alongside them! Whether this is through standing up for them, getting them out of the house, being an ear for them to talk to, raising money for their disease, educating yourself on their dieseases and so on. This will show them they are not alone and should not isolate themselves.
18. Look beyond the surface. Be willing to question their fake smiles and false brave faces. Let them know you understand they are struggling and the day is really challenging you. Your loved one will then open up or take great comfort in your being able to see the deep pain that so many ignore.
19. Help them. Whether they look like they are coping lifting, pulling, pushing or even walking. Don't make it obvious as sometimes this causes your loved one to become down about not being able to cope and people seeing this. Jokingly link arms when you are walking, run for the door like it was a silly challenege, lift bags to show of your newly gained strength from all your gym work etc. You are then really helping but not drawing attention to the basic tasks that your friend is now struggling with and is now a difficult task for them.
20. Don't complain or be ungrateful infront of them. Don't go on about not wanting to go on a holiday, your pizza being slightly cold, your parents not allowing you to skip a family meal etc. Your loved one can no longer enjoy all the pleasures you can and it kills them. They are simply having to learn to be grateful for sitting and seeing the sun, having a coffee in a cafe, a drink with a friend etc. That you complaining about a trip of a lifetime to America for example will be crushing to them as that is all they are dreaming off / was one of their many goals. Help your loved one show gratitude by raving about a coffee being the best hour of the day or the local pub quiz being the best night of the week. This helps you improve your own gratitude skills as well kicking life into touch as really making your loved ones week. They feel included and still cool. Their illness not barrier or dulling the events.
Hopefully the above 20 tips will help you be a pro. Now you should be able to support anyone ( whether they are a Lymie or suffering from a different chronic illness ). I hope you have really learnt something from today's blog and these tools will answer a lot of your questions.
If you do have any further questions , tips you want to share or advice needed please don't hesistate to reach out.
Go and show your loved one you are ready to fight and are right by their side for the whole of their ride.
I am so, so lucky to have the best support network. Who always know how to cheer me up and be there for me.
To them I am truly grateful! I love you all my beautiful souls.
& I love all my readers.
My little hero's ! You keep me fighting!
Let me know if this post is helpful.
Love and peace