Lyme Milestones

Today marks 8 months since Lyme started to change my life. On September 17th, when my temperature shot up to 105°F I had no idea what I was about to embark on.

Recently, a trip to the pharmacy felt like a milestone, as I walked away with three drugs to take all at once. I’m no stranger to pills, as you know. But the majority of them are vitamins, supplements, enzymes, etc. To get to the point of taking azithromycin, plaquenil, and cefitin all together felt like unlocking a level of Lyme achievement. Antibiotic, anti-malarial, anti-bacterial…collect ’em all.

IMG_20150424_191952

Mile markers.

Peeling back the layers

It is often said that treating Lyme is like peeling the layers of an onion. Because Lyme effects multiple body systems, and Lyme bacteria changes form throughout treatment, recovery can feel like a roller coaster. The herxheimer reactions as bacteria are killed, releasing toxins that make you feel worse, happen again and again with each “layer” of treatment. Throughout treatment, medications need to be switched up because over time, the different forms of bacteria can hide from or adapt to antibiotics. I write this on a foggy day, so I hope I am making sense.

lyme forms

What all of this means is that it is hard to know how I will feel day to day, week to week. My most problematic symptoms rotate. For examle, earlier in my illness, lower back pain was daily. Now, it is rare. For a while, my short-term memory was horrible. It got better for a time, and now when I have bad days it is poor again. My drooping right eye, ear, and shoulder, and accompanying arm and leg pain seemed to be improving for a while, and now they are acting up again.

I experienced my last big herx a couple of weeks after a change in medication protocol. Now again, things have started to change. Several days ago, I started to go downhill, and it was, like clockwork, a couple of weeks after a protocol change.

Experiencing a resurgence or intensifying of symptoms is frustrating, and can feel like going backwards, but is actually progress. It means something is happening. I like to imagine that some of my neurological symptoms flaring means nasty Lyme bacteria in my brain are being attacked – it hurts now, but hopefully that means good days that are even better than previous good days are ahead.

Layer by layer, on the road to better.

 

Are you there 75%? It’s me, Brit

I saw my Lyme doc two weeks ago, and since then thought and rethought how to write an update on my progress several times. There were no big revelations and I did not make as much progress as my doc had hoped I would.  We changed my antibiotics as expected. I had been on doxy for months, so it was a good time to switch it up to keep the Lyme guessing, and the sun sensitivity became an issue with the arrival of spring – sunburn at 4:00PM in April, anyone?? Not cool! My blood work didn’t reveal anything of note. No new symptoms. Some symptoms improving, none drastically.

The thing that keeps replaying in my mind is that she said she hopes to see me feeling 75% better by my next appointment in early June.

At my March appointment, she wanted to know what percentage better I felt. I had no idea what to say. I don’t think mathematically to begin with, and my health and general state of being has been so weird for months now – it’s really hard to quantify in such a cut and dry way. The lows are So Low, and the highs don’t really last long – so now I have to calculate some kind of average…can I phone a friend? Like, maybe my wife, who’s an accountant? 🙂

In the weeks following that appointment, I let the idea marinate, and by my April visit, I was able to say that I think I had been about 40% better in March, and was then, in April about 50% better. Even as I write this now, it feels disingenuous to say that I am 50% better when I’m sitting here with a headache and a face that feels like it’s falling off. That’s with a nap today, and all I did aside from preschool pickup/drop-off was take a neighborhood stroll, and run two brief shopping errands. I took very necessary naps the last three days, actually.

On the flip side, I was able to stay out and about with my son two days this week until 6:00PM. One day a gathering with friends, which I thought for sure would do me in, but the next day I felt pretty good and even did some heavy lifting at home – switching out our cold/warm weather clothes and doing some organizing.  The other long outing out was a pretty leisurely afternoon at the park yesterday, where the kiddo ran around and got filthy with buddies, and I got to chat with mommy friends – it didn’t feel particularly strenuous, but I am definitely feeling the effects of it today.

Which brings me to the other problem with the percentage rating – my current activity level. I am not doing what I used to do – what I hope to do again when I am better. I’m still not able to go about my business as usual – so to me, that seems like my percentage is pretty low. If I was trying to work with a doula client right now? I would say I was zero percent better, because I would be completely unable to do my job.  I am able to teach my music classes, but that is with careful planning to get enough rest the day prior, and recuperation time after. The classes are 45 minutes long and two days per week, by the way. It also takes me at least twice as long to complete my lesson planning now as it used to with my memory/focus problems. So what percent is that?

At any rate, feeling 75% better sounds really good right now. So here’s hoping.

What Helps

When someone you know and/or like and/or love has a long term illness, you may wonder a lot of things. Do they want to be bothered? Do they need help? Are they really still sick? How bad is it? Do they want to talk about it? Am I a close enough friend to get involved? Do they want me involved? I want to help…but how? I have pondered many of these questions myself when someone I know has been ill with a serious or long term illness. Now, as a card carrying member of Sick Club, I think I have some answers to share!

Every person’s case is different, but I think some things are fairly universal. Here are simple ways to help or show you care when a friend or loved one is dealing with a long term illness:

Drop a Line
In my case, it’s hard for me to talk to people sometimes, for a variety of reasons – the fatigue, the brain fog, the forgetfulness (“Hi, just returning your text…from two weeks ago!”), the dance of figuring out how much people want to know, the feeling of not having anything to talk about other than, “Yep, still sick!”

I can tell you this – any sick person would be glad to hear that you are thinking of them and wishing them well. A text, an email, a quick note in the mail – whatever works for you. Simply saying, “I know you’re going through a tough time, and I am keeping you in my thoughts,” is always a welcome sentiment, and could easily turn out to be the highlight of their day. These written forms of checking in are a great alternative to calling because they allow the person the opportunity to respond when they feel up to it.

I found out about these – Empathy Cards for Serious Illness – through a fellow Sick Club member. They are greeting cards made specifically for people with serious/long term illnesses. I love them, and think browsing through the cards gives a great idea of what sick people want to hear.

20150506_201031

A thoughtful friend of mine sent me this custom card to show her support. How lucky am I?

Cut Some Slack
When you’re sick for a long time, it can be very hard to keep up with the bare minimum – keeping yourself (and family) fed and in clean clothes. If they forget to follow up about something, or haven’t checked in in a while, consider cutting them some slack. Feel free to drop them a line to touch base, but understand that there are a million reasons why they may have dropped the ball or fallen short in some way, and try not to take it personally.

Listen
If you get a chance to chat with them, when you ask how they are, listen. Give them a minute to collect their thoughts and just listen. Sometimes it feels really good to vent to a empathetic ear. It’s not necessary to have advice to share (and probably preferable not to, to be honest). Simply saying, “That sounds so hard. I’m sorry you’re going through this,” is a totally appropriate response. If they give you a brief answer to “How are you?” and start to change the subject, that probably means they are not up to talking about their illness and you should take their lead. Sometimes it is wonderful to have a normal conversation, and think about anything other than being sick.

Send Food
If you’re going this route – check first to see if they have dietary restrictions due to the illness itself or medication/treatment. “Are you able to eat like you used to, or do you have to follow any special diet?” is a simple, direct way to find out. Meal planning and preparation can be challenging and exhausting when ill. Dropping off a home cooked meal or snack is a wonderful idea – send an email or text to say you want to bring some food by and want to know when would be a convenient time to drop it off. A gift card to a grocery store with delivery service, or a local restaurant that delivers are great gifts. A fruit basket. A snack basket. A care package – if it’s food that’s safe for them to eat, and requires little effort to enjoy, chances are it is welcome.

IMG_20150225_185924

This medical themed gift basket had fun snacks from dear friend. It made me so happy!

Mailbox Cheer If words or food aren’t your thing (or you’re not local), sending a little something to deliver mailbox cheer is a lovely idea. No matter how small or inexpensive, everyone loves getting something other than a bill in the mail! You don’t have to worry that you are interrupting them, bothering them, or waking them up, and they get something that is sure to brighten their day.

IMG_20150424_160213

A generous friend sent me this thoughtful and completely unexpected gift to cheer me on as I fight Lyme Disease

Remember that they may be on a very long road
They are running a marathon, not a sprint. They may not even know how long they will be ill for, or they may know that they will never be better. Either way, their patience is being tested, and being patient with them in return is necessary. It is incredibly frustrating to be debilitated by an illness, it becomes even more so when others seem to be impatient about your recovery. As in any marathon there will high and low points – sometimes they may seem okay, but it will likely be temporary. You can feel pretty confident that if they are cured, or in remission, or vastly improved in some significant way – you will know about it. They will likely be very excited and happy to share the news. Until then, never assume that a good day means they are All Better.

Don’t Play Doctor
With all the information we have at our finger tips these days, you can find 3487403872867 “cures” for any illness with a quick google search. Please don’t tell someone who is seriously ill that they can be cured by exercise, optimism, essential oils, some drug imported from another country, standing on their head for an hour each day…you get the idea. Anyone with a long-term illness has likely been up to their neck in their own research, and has probably made the rounds with plenty of medical professionals in an attempt to get themselves the best care. Unless you are asked for advice or help in this arena, it is best to stay out of it.

So there you have it – go forth and be caring!