Tuesday, January 18, 2011

How to Support Your Lyme Patient

A few thoughts for those who have a lyme patient in their lives.

Is it a lot to ask a caregiver to know the details of a loved one's illness? I don't think so. I totally take into account and respect that those who aren't sick have lives of their own; jobs, daily stress and their own every day aches, pains, cold, flus, etc. However, small gestures, even just knowing the lingo of a loved one's illness makes them feel respected and cared for.

1. Weight - Don't comment on their weight, whether they've gained or lost. For some reason people think it's okay to say, "oh my gosh, you're SO skinny!" Despite our society's screwed up notion that "skinny = beautiful/healthy" no one would ever say that to a cancer patient. Depending on the person, lyme can make one gain or lose weight, so it's best to just not comment at all. Some people may have lost weight and perhaps "look better," but you can bet they don't feel good at all.

2. Sleep- lyme manifests in different people in different ways; some want to sleep all the time and some can't sleep AT ALL. It doesn't help to make comments about their sleeping all the time. This is not exactly how they would want it either. Unfortunately, the wanting to sleep all the time is a symptom of the illness, so allow the patient the ability to deal with this symptom with no pressure. It is NOT because they are lazy, it is because they are very sick and they literally can't stay awake. On the other end, I can't emphasize enough how prolonged sleep deprivation effects one's personality. It is maddening to be exhausted to your very core, but unable to get a good night's sleep. Be patient with your lymie, you would be cranky too if you hadn't gotten a good night's sleep in 2 or more years.

3. Noise, smells, lights - Lyme can effect the nervous system and the immune system, and thus a lyme patient can become extremely sensitive to noise, smells and bright lights. I now can't stand the smell of green beans or peas. They are totally overwhelming to me and make me nauseous. Being in a crowded place with a lot of people/noise/bright lights is painful. Strong perfume, cleaners, paint etc give me a headache almost immediately. Because of the sleep issues loud noises while I'm falling asleep, during the night, or in the morning sound even louder to me than others. Something that wouldn't wake a normal person up during the night will wake me up. The sleep deprivation is beyond what a normal person thinks of as having "not gotten a good night's sleep." So any help you can give to make the environment for the lyme person odor free, noise free etc helps them enormously.

4. Irritability - Constant pain, lack of sleep, nervous system aggravation - these can all lead to serious irritability and a short temper. I am still struggling with this. I can feel that I am irritable because I am exhausted on a level so deep that it's hard not to just burst out crying most of the time. Remember that your lyme patient is dealing with a lot of different pains etc going on in their body, and then they don't get sleep at all. If you notice irritability etc try to be patient and remember that it is the illness, and not your loved one. Unless of course they were irritable BEFORE lyme disease, and then you're on your own. :)

5. Memory - Lyme can severely affect memory and speech - when I was first very sick I often stuttered, couldn't think of a word, reversed letters at the beginning of a word, and couldn't remember what I was going to say - that has gotten better but I now still have bad short term memory and I can't do anything too detailed yet. My boyfriend has had to hear the same story over and over, and the scary part for me is I have no recollection of having told him before. He says, "honey, you already told me that." Very frustrating for the lymie. So, if you have a lymie in your life, and they keep telling you the same story over and over, or are talking to you and can't remember their thought or word, be patient and understanding.

6. Diet - Diet plays a major part in healing for a lyme patient - yes, it can be tiring and annoying to deal with someone in your life who now can't go out to restaurants, drink alcohol, participate in the social activity of eating. Just think how your lymie feels! It is very non-productive and destructive for the caretaker of a lyme patient to be resistant about the diet changes the lyme patient must make. The lymie is already exhausted, scared and sick, and doesn't have the energy to not only think about and prepare healthy food, but to also argue with you about why they need to eat this way. Anything you can do to encourage them to avoid sugar, unhealthy foods, alcohol etc is helpful. Also, whatever help you can give to prepare healthy meals, freeze things for them to heat up, help them find foods they CAN eat when you go out. All of this serves to help the lymie towards healing.

7. Medicine - Lyme patients often end up taking a LOT of medicine and supplements. For me, it feels like I take medicine ALL day. Sometimes, all you need to say to your lymie is, "did you take your medicine today?" "Do you need me to pick up anything for you at the drugstore?" Also, some lyme patients are in a very bad "lyme fog," and just the simple task of sorting all of these meds/supplements into a pill box could be daunting. Taking a 1/2 hour to help them sort their pills for the week actually reduces their stress and will aid in them remembering to take their meds. Also, for me, each time a new medicine is added there is always an adjustment period. So, if your lymie seems particularly irritable, unwell and/or you notice they are really struggling, it could be they are adjusting to the medicine and/or having a herx. Make sure you know what a Jarisch-Herxheimer response is when your lymie starts their antibiotics.

8. Pain - Lyme disease can be painful and uncomfortable. When I go through a "flare," I am extremely uncomfortable in my body. It hurts to lie on the couch doing nothing. Even on a "good" day, my muscles burn and twitch. As a lyme patient I actually got used to it, and what would possibly considered unbearable for others, a lyme patient must learn to tolerate on a daily basis while they get diagnosed and wait for antibiotics to do their job. Think about it; there are a myriad of symptoms going on in the lyme patient's body at any given time - headache, inflammation of the muscles and joints, nausea, fever, sweats, chills, dizziness, muscles twitches, exhaustion etc. Again, late stage lyme / chronic lyme can manifest in different ways for everyone, but it is still painful! And, once they go on antibiotics they may experience a severe flare of symptoms in reaction to the medicine, so now they are dealing with even more pain. That said, anything to make their environment more comfortable is helpful. For me, hot baths with magnesium really help. Offer to run the water for them and prepare a bath. If they are nauseas, offer to make something to eat that will help quell the nausea. Even just asking, "what can I do to help you feel more comfortable?" goes a long way.

9. Paperwork - HELP!!! - Disability/insurance/doctor's bills/monthly bills etc - I can't emphasize enough how overwhelming it is to try to navigate the maze that is disability and insurance when one has lyme. Not only is a lymie's brain in a complete fog, but again, there is so much physical discomfort it can be hard to just sit at a desk, let alone comprehend confusing information. The disability process can be slow and frustrating, and if the lymie is now unemployed and uninsured that is a whole other paperwork nightmare to deal with. The lyme patient is going to need help! Seriously, who has the mental wherewithal to combat government red tape when one is well, let alone suffering from a debilitating and exhausting illness? Help the lyme patient organize all of their paperwork, look at things on-line with them, help them navigate disability and insurance. Trust me, you will get an education too that you might need yourself some day!

10. Advocate - Lyme is a hot mess. It is not a cut and dry disease where you go to the doc, he tells you what's wrong, you get the medicine, you get better. Well, yes, that can happen if you are lucky enough to get a tick bite, SEE IT, get a rash, get tested in a timely manner and actually get a positive test. In this scenario a few weeks of antibiotics and you are fine.
HOWEVER, that is not who I am talking about here. I am talking about myself, and the rest of the lyme patients who went misdiagnosed or undiagnosed for years, and now have late stage lyme. Lyme is a disease that not only the patient but the caregivers/support team MUST EDUCATE THEMSELVES ABOUT. It is enormously helpful to a lyme patient to have 1 or 2 friends or family members to be on their team, and go to doctor appointments with them! When I first started going to doctors I was so sick it hurt to even sit on the exam table, let alone take in whatever the doctor was saying. I am so grateful I always had either a friend or family member with me. There is an enormous amount of information for a lyme patient to take in. Particularly in the beginning, if you are fighting to get diagnosed. So, if you have a lymie in your life, take the time to read the literature about lyme disease, watch the film, "Under Our Skin," read "Cure Unknown," by Pamela Weintraub, go to the doctor's appointments with him/her, be invested in the person's healing. It will go a long way to getting the person you loved before illness back!

Disclaimer: I am not a doctor. I am a lyme patient and this information is based on my own experience, please do not take this as medical advice. If you or a loved one have or suspect you have lyme disease, please consult a Lyme Literate Doctor for any questions you have.

Wednesday, January 5, 2011

"The World Ain't All Sunshine and Rainbows" - Rocky Balboa

I find I don't want to write and don't even know what to write about anymore. I discover that I no longer have hope. I no longer expect a doctor to tell me he has "the answer," because after 2 1/2 years of this I FINALLY get that no one is going to say that. I have accepted that this is just going to keep going on, that getting well is not going to happen over night and that it is going to take time. I have accepted that this is my life right now, and every choice I make has to be about healing.

I have been on Mepron/Zithromax and hydrocortisone for a month now. I do not feel better. In fact, I have had two very bad episodes in which my neck/shoulder/head hurts so bad I can barely get out of bed. With this headache comes severe nausea and muscle inflammation. On one I occasion I had a fever and was vomiting. I am also now sweating profusely while I sleep. If the theory goes that the antibiotics can give you a herx, I could be experiencing something like that. Babesia is a malarial like illness, so sweating, fever, nightmares are par for the course. I never understood what "night terrors" were until this illness took hold of me. I have dreams of demons and visions so terrifying that I still can't forget them. I remind myself that this is not my brain, it is the illness in my brain causing this. Although the nightmares have stopped in the last few days. And my heart, once again, has stopped racing. That happened when I was on doxycycline, and it always feels so good when it calms down.

I continue to do vitamin drips and they help. I definitely have more energy the day after I've had one. Because of these, I get through Christmas Eve and Christmas Day with no pain. A small victory! Although, come New Year's, I find myself curled up in bed, fighting an episode. This one lasts 5 days. It hurts to the core of my being and it is even difficult to get a hot bath, which usually helps the muscle inflammation. I see Dr. X right after this and I feel so defeated. It is during this appointment that I finally get real with myself, and realize that he is not a magician and can't wave his wand and "fix me." I think up to this point I was unrealistically wishing that would still happen, someone would have an answer that would have me better in two weeks time. Although it is hard to face, I am glad for this epiphany. Now I will gather all of my internal resources, dig deep, and fight yet again. Mental toughness doesn't necessarily mean courage, to me it is getting knocked down over and over and over and getting back up anyway. My boyfriend and I watch "Rocky Balboa" on New Year's Eve, (before I get sick), and there is a speech in the film Rocky gives to his son. It resonates for me. "Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done."

It's a new year. I hope 2011 is my come back year. That's what my sister keeps telling me. I am adding more medicine/supplements to the mix I am already on, and I am trying to practice patience with myself and the healing process. What I want in this new year is; to help more people who are just discovering they have this illness, to be more actively involved in the politics of the disease and to help raise awareness to the best of my ability, to educate everyone around me about the pitfalls of this illness. I want to be less hard on myself, to let go of the anger I feel about being sick for so long, to accept that even if I am sick like this for 3 years that is just a blink in the big picture of my life. For now, I am not making any long term plans. I am just sitting with this illness, not in pain today, grateful for this small moment.