Lyme disease sucks.

[xofivebyfive]

Never ever get lyme disease. It screws you up so badly.

Okay so sometime in summer of 2005 I contracted lyme disease, but I wasn't diagnosed until this past June. I've been on antibiotics for two months and it hasn't helped at all. So now I'm going to have an IV put in and have to get the medication that way.

Lyme and the medication for it has made me so exhausted and I'm in so much pain that sometimes skating is hard to do. It used to be the one thing that made me feel a little better, but now I can barely stand on the ice without feeling dizzy and feeling like I'm going to fall over.

I was just wondering if anyone else on here has ever had lyme, and how they dealt with it and skating and the exhaustion and frustration that comes with it. I guess I just need to feel like I'm not alone.

[Sessy]

I didn't have Lyme, but I did have something they never quite diagnosed (at least, what they diagnosed wasn't enough to explain the tiredness and they said there MUST've been some other virus involved that was out of my system by the time the bloodworks were done but that had done damage, or else they just couldn't explain it).

The only thing I can say is, make VERY sure you get your vitamins, especially B-spectrum, and your minerals, especially magnesium, iron. It helped me a lot to take some 200-300% of your daily advised dosis daily, but this was after the disease itself was gone - just residual tiredness. At any rate, if your body is to battle this, you'll need your minerals and vitamins.

There's actually a good chance the IV will be more effective than the pills, because sometimes your guts are too far gone to absorb things like antibiotics well - but if that's the case, they're not absorbing vitamins and minerals either.

And other than that, I had to start out slow. At some point, I couldn't walk a 100 yards down the hospital ward, but I'd make myself. I felt deadly tired from it, but every day just a little bit more, didn't make me feel more tired than I had been the previous day.

Then we started having walks in the forests, my mother and I. Later I took up shooting - which was actually heavy exercise for me, believe it or not, having to hold up the gun. Later still, we took more walks and I started ballroom dancing. Took up skating after that - I could barely do 3-turns at the time. Went from there.
I'd have to say it's the skating that actually got all my strength back.

Also, keep in mind some of the tiredness could be due to the heavy strain on your liver - I don't know what antibiotics you have, but some will do that. If that's the case (should be in the leaflet with the pills), you might wanna lay off fried and very greasy foods, as well as alcohol and very spicy foods, for a while to give your liver a little more rest.

Another thing is, DO get enough sleep. I was sleeping some 16 hours a day at some point, and I needed it. Only when I figured out that hey, this is how much sleep I need, did the tiredness start to go away. Gradually I needed less sleep to not feel tired. I need about 9 hours right now, 4 years later.



So, as I've said, while I didn't have Lyme, I do think I understand a bit of how you feel. It's like... It's a lot about priorities. Priority number one is giving your body everything it needs to heal. And priority number two is staying sane. So you know... School, some of your friends, might come third place, and it's not a bad thing. You can't expect to go on the way you were before... But change isn't always bad. I grew up a LOT from the experience, and I learned a lot about myself, about who *I* am, *truly* am. Before, I was oftentimes influenced by what other people thought, liked.

Once it was just me and a hospital bed, well that kind of makes you think. And I had a lot of time to do that, as I imagine you have. More than I'd liked to have, but I learned that my true strength is my mind, my soul. That that's really indestructible, the will to live, not just survive but really live.

And it takes years. This might very well be the next, 10 years of your life that this will echo in. When I first heard that... I just gasped. I couldn't imagine it, being like 16 or 17 at the time... And I'm almost 22 now, and when I look back, it really wasn't such a long time. It's just, one thing at a time. One goal at a time is perhaps the better point of view. And two steps forward, one step back is still one step forward. And if pills "aren't doing anything", they could very well still be keeping you from getting worse.

And there's some egoism involved. It took me a whole while to sink into my head that, that's it, I'm sick, and I deserve some slack. And not just deserve - need it. I used to think of myself as so... Well, I mean like, die, who, me? I can't die. Get ill, who, me? I'm not ill, I'm not an invalid, stop treating me like that... But at some point it sinks in that, really, while it's ridiculous to be treated like an invalid and very unnecessary too, that yes you need extra help from other people if you're to cut it.

Believe me you're not the only one... A friend of mine had something like that as well - they never quite diagnosed her beyond "chronical tiredness" either. She had pains in all of her body and was tired all the time and they couldn't diagnose it - means they couldn't treat it either. Quite worse than when they're treating it, to be honest - I had a period where they couldn't diagnose my stuff either, as you have. That stuff does you in emotionally.

At least they know what they're up against and there's a very good chance you'll get better. It might take a few years though. Which will past quicker than you think...


I hope I'm being some help here, you can send me a PM if you'd like to talk in private.

[xofivebyfive]

Thank you sessy. I appreciate your post and I'm sorry you had to go through what you went through, and it makes your skating progress all the more amazing. You are really an inspiration to me.

[Sessy]

Oh, don't be sorry - I'm not. (Nor do I wanna be an inspiration - LOL that's really weird to hear! It really is.)
It really did teach me a lot about myself, I wouldn't quite say that it was worth it... Actually becoming a millionaire over this wouldn't be worth it. But it did teach me very valuable things about myself, I can't deny that. And I'm *sure* you'll discover a lot about yourself as well. :lol:

Besides, that intravenous stuff is gonna work! 8-)

[samba]

Hi Laura

I have never heard of Lyme disease so I looked it up on Google, my goodness it sounds really awful, lets hope the medication helps and you get better soon, but take things at your own pace, your body will tell you how far you can go.

[sk8pics]

Once it was just me and a hospital bed, well that kind of makes you think. And I had a lot of time to do that, as I imagine you have. More than I'd liked to have, but I learned that my true strength is my mind, my soul. That that's really indestructible, the will to live, not just survive but really live.
I can totally relate to what you wrote, Sessy, given my own experiences of the last 10 months. You expressed yourself beautifully.:bow: :bow:

I have known a couple of people with Lyme, though not skaters. It did take a long time for them to get back their strength and they were misdiagnosed for a time. I think one of the key things was the right rehab, at the right time, so keep that in mind as you go forward. A friend of mine right now is suffering from something, and first they thought it was lyme, then they thought it was lyme and something else, and now they think it might be rheumatoid arthritis.:cry: She'll get through it but yeah, the issues with getting a proper diagnosis are very hard.

Good luck, xofivebyfive, and hang in there and try to take care of yourself.

[Nancy]

You have my sympathies. While I've been fortunate not to have to deal with this myself, my aunt is on her third bout with it. Apparently the area she lives in is quite the hotspot for this thing. Not fun!!

[Emberchyld]

Meg Cabot, the author of the "Princess Diaries" has Lyme Disease, too, and blogged about it recentlyhttp://www.megcabot.com on her site. She's not a skater, but she had a rough time, too, and it was interesting reading about her recovery and experiences.

I hope you feel better!

[Scarlett]

I had lyme disease. Well me and the dog and yes it does suck. I was lucky I had a fairly mild case and I live in such a lyme prevalent area that I got diagnosed pretty early (after about 2 years of worsening symptoms). Some days I was so tired I could barely drag myself out of bed and I definitely could have lived without the muscle and joint pain. After the long course of abx, i came out without any long-term sequelae (though my knees still tell me about myself occassionally.)

If you need a sounding board, just say the word.

[Sessy]

I thought people in hotspots could get a vaccination for it? But it's everywhere really. Europe used to be lyme-free, but nowadays it's spread from asia as far as the ukraine, and we're beginning to get cases here as well, so only a few years are left before we have a full scale epidemic of it here. :x
Whatever people come up with to kill germs, mother nature comes up with something better to hurt us. Makes ya think, huh? 8O

[herniated]

So sorry you feel so lousy. :cry: I never had lyme but I did work for a woman once many years ago who had it. She was put on the intravenous stuff too and eventually she recovered. (I don't know if it ever leaves your system completely?) This was back in the 90's, so today I'm sure the meds are better. At least I hope so.

Again, speedy recovery.

[xofivebyfive]

Just found out that with the IV in I:
1. won't be able to run XC
2. won't be able to bend my arm a lot so basically skating will be extremely hard to keep up with. Definitely won't be doing axel or doubles anytime soon which is killing me to think about. I guess the next 3-4 months I'll just have to perfect all of my spins and mitf. Which sucks because I love jumping.

[Morgail]

Just found out that with the IV in I:
1. won't be able to run XC
2. won't be able to bend my arm a lot so basically skating will be extremely hard to keep up with. Definitely won't be doing axel or doubles anytime soon which is killing me to think about. I guess the next 3-4 months I'll just have to perfect all of my spins and mitf. Which sucks because I love jumping.

Ugh - that sounds awful. How often do you have to get the IV put in? Thinking of getting an IV makes me shudder. Can you not do any jumps at all? I'm off-ice completely for at least a couple of months, so I empathize :frus: .

[xofivebyfive]

Well the little tubey thing will be in my arm for either 3 or 4 months I'm not sure how long, but I'll need to run it every day for like 2 hours. I'm really not sure if I'll be able to jump. I guess I'll just see what I can and can't do the first time I skate with it. It certainly rules out my landing or even attempting an axel or double loop anytime before 2008.

[Sessy]

XO, I sympathise... Right now actually, with the broken ankle (which I managed to damage again after the gips was taken off - long story short, that was another accident - very frustrating) which wasn't treated i was basically told it'd be a year before I could jump again. By which point I'm pretty sure the lutz I had last february will be gone, considering how fast the flip went, and all the other jumps too. And that while I was starting to work on the axel back then...
... Yep definately feeling your frustration ALL the way down there. You know, why'd I have to mess up my ankle, why'd you have to get bitten by a parasite?... Chances, chances. Sometimes, lady Fortuna isn't on our hand, or she has other plans for us than we do. You can't break like, through, every plan the universe has for you, through every chance. Sometimes, you can meddle with the odds a little, but generally once something has happened, you've got to accept that it has consequences and that it happened in the first place.
Time travel hasn't been invented yet.

But I'm really, really serious here... Your path, of life, is not necessarily skating. You can skate the remainder of your life, and be still very very successful as an adult skater later on, maybe even teach. But, obviously, here's a lesson the universe wants you to learn right now, can't be put off till later.

And uhm... Well this is what you have to do to make sure that later on you will even HAVE a body to skate. Cuz skaters - are artists, except the instrument we play on is irreplaceable. In my piano playing times, I changed three piano's, but there's only ONE body I can use to skate - same for every skater.
And uhm, well the one time the piano had a broken pedal and a burst snare, I had it fixed before I continued to play on it. Same thing here, you've gotta fix your instrument before you start thinking about, playing your next sympony so to speak.


Just see this, as a workout - but not for your mind, but for your soul, for your spirit, for your mind. You've got to train your spirit and your mind in the upcoming months, while your body recovers. And that WILL bring you new mental skills, trust me. Which can be very valuable in life in general, and in skating too actually.

Before I got ill, I was scared to death of performances in public. Nowadays, I'm like... "Uh, hi there people..." I don't care about a lot of stuff I would've stressed myself out over before I got ill, cuz now I know it's not important.

Just ride this experience out. It's awful, but you're gonna have to go through this one way or another and you might as well try to get something good out of this.


Oh yeah I learned to play the guitar when I got ill. I'll still play like, once every few months, sometimes a little more when I'm bored, that just keeps the skill at the same level. Just, you know, a suggestion.
Oh yeah I also read the complete works of Shakespeare, and a lot by Bronte sisters, Jane Austen, Victor Hugo. I also read the Canterbury tales, and lots of ancient greek and roman mythology.

Get your focus off the skating for a moment, and develop yourself in the broad sense. That's the only way I stayed sane.

Now again, I don't know where you are in life right now - are you still in school? If you are, you could consider - if you're good at studying from books alone, without teachers - to just go ahead and study the stuff for next year. I read lots of the books I knew I'd need for the five languages I was taking in my curriculum (over a 100 in total, we had some *serious* reading lists you needed to have read). The reason for this is that then, when you ARE better, you can use that time for skating, or ballet exercises at home, instead of for homework you can have done now... Now of course you'll have to brush up on stuff you'll already have forgotten again, but, in general, you will have a little more time to skate than you otherwise would.
If you're still in school that is.



As for the IV... Things could be worse: I kept developing allergical reactions to surgical steel, so I had an IV put in and taken out twice a day over the course of a few months (this kinda tends to ruin your veins and, most of all, the procedure is everything but pleasant, and also keeps you in the hospital.)
You could, in theory, ask them to teach you to make intramuscular injections, if the drug you have to take comes in an intramuscular variety (the stuff they put in the IV isn't necessarily fit for intramuscular injections) you could learn to administer it yourself. It's really scary at first but once I got the hang of it, it's a walk in the park, piercing the skin on your bum is the scaryest part, from there on it's really easy. But not every drug comes in an intramuscular variety and most doctors will be hesitant to learn a patient to inject him/herself. I was just lucky we had friends in the medical sector who were prepared to teach.
Intravenous injections are not that hard either, but IV drugs generally need to be given in small dosages over a long period of time, which means you can't inject them.

[Mrs Redboots]

She's right you know - focus on getting well. Skating will wait; I know it feels like it can't possibly. But it will. If you can still skate, well and good - if you can't, or can't do as much as you'd like, that's miserable for you, but it's better to take it easy for a few months and get really well again. The ice will still be there, and if you can keep up your basics, so will your jumps.

Why not get your coach to teach you figures, if you have an older coach who knows them? They are actually quite fun, and can do wonders for your basic skating.

[Sessy]

You're right. Edge control sooo makes the difference between looking like a newborn bambi out on the ice or like an experienced skater. There's this one elderly lady at our rink who sometimes practices, I think she skates at a different rink usually, but she's an ice dancer and WHOA! I mean I've never seen her jump or spin, but WHOA. 8O
Not even our coaches have edges rip and under control like that.

[kimberley801]

Well the little tubey thing will be in my arm for either 3 or 4 months I'm not sure how long, but I'll need to run it every day for like 2 hours. I'm really not sure if I'll be able to jump. I guess I'll just see what I can and can't do the first time I skate with it. It certainly rules out my landing or even attempting an axel or double loop anytime before 2008.

It sounds as if you are getting a PICC line (Peripherally Inseterted Central Catheter) - Think of it as a long term IV. It is a flexible catheter inserted into your arm, most likely where your arm bends. It is typically sutured onto your skin to hold it in place and a dressing is placed over it. you could keep it wrapped up with an ace bandage or even a sock with the toes part cut off. Then it shouldn't catch on anything. You will still have range of motion in your arm, but it may feel uncomfortable, especially at first. I have never had one myself, but as a nurse I work with these lines on a routine basis. Just don't let the dressing get wet. If your docs don't want you on the ice with the line, try off-ice exercises. Dont' got against doctor's orders. Let me know if you have any questions about the "IV".

[xofivebyfive]

It sounds as if you are getting a PICC line (Peripherally Inseterted Central Catheter) - Think of it as a long term IV. It is a flexible catheter inserted into your arm, most likely where your arm bends. It is typically sutured onto your skin to hold it in place and a dressing is placed over it. you could keep it wrapped up with an ace bandage or even a sock with the toes part cut off. Then it shouldn't catch on anything. You will still have range of motion in your arm, but it may feel uncomfortable, especially at first. I have never had one myself, but as a nurse I work with these lines on a routine basis. Just don't let the dressing get wet. If your docs don't want you on the ice with the line, try off-ice exercises. Dont' got against doctor's orders. Let me know if you have any questions about the "IV".
YES that is exactly what I'm getting. I was told that I wouldn't really be able to bend my arm that much and that I can't do cross country, I haven't been brave enough to ask about skating.

Oh and my mom's a nurse too so she'll be able to show me how to do the IV thing myself so she doesn't have to do it every day.