Posts Tagged ‘Invisible Illnesses’

Invisible Illness Questionaire – A Year Later

// June 6th, 2010 // 6 Comments » // Invisible Illnesses, LymeBites Blog

I answered the following questions in September for the National Invisible Chronic Illness Awareness Week.  Today is Invisible Illness day so I decided to answer the questions, a year after becoming sick. 
1. The illness I live with is: Chronic Late Stage Lyme disease-Babesia-Bartonella

2. I was diagnosed with it in the year: 2009.  Though I’ve been sick with the disease at least 20 years, it wasn’t until a series of 5 steriod injections in my back in 2008-2009 for back pain that the disease was fed by the steroids to the point I became so ill in 2009 I became bed ridden and unable to work. 

3. But I had symptoms since: 2003, though there are “markers” in my medical history as far back as 5 years old that could indicate a Lyme infections.  The list of things I had wrong with me is below.

Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)

Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.

Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.

Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.

Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.

In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.

In 2010 I am seeing a cardiologist again because of the same type of issues and irregular heart beat.  They are checking everything out again to make sure there is no damage to the heart from the Lyme disease. 

I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)

I have strange rashes on my upper body that have been there for 6 years.

4. The biggest adjustment I’ve had to make is:  At this point it is giving up my home and having to move in with my mother to afford the treatment I need.  I’ve been out of work over a year, and am facing having to go on disability.  That is a big adjustment.  Beyond that I’ve spent the better part of the last year in bed.  That affects your life drastically.  From the things I am no longer able to do, to all the things I’ve missed out in the last year.  That is an adjustment to face that on a daily basis. 

5. Many people assume: That if I have a good day I’m getting better.  It doesn’t work that way.  I have good days, I have bad days…it’s part of the disease as well as the treatment.  While treatment as a whole is making me feel better, people expect you to suddenly be up and doing an irish jig just because you have one good day.  They then seem confused and disappointed the next day when you’re back in bed. 

6.The hardest part about mornings are: Waking up and realizing it’s real, and not just a bad dream

7. My favorite medical TV show is:  Scrubs…will always be Scrubs!!!

Two important things: My iPhone and my pride.

8. A gadget I couldn’t live without is: My laptop.  It’s my link to the world when I don’t leave my bed.  Social networking saves the lives of those of us who can’t get out into the real world. 

9. The hardest part about nights are: Right now I have no complaints about nights, I seem to have overcome the whole Lyme insmonia problem thanks to the Ondamed treatment (google it).  So for right now, I love nights, I sleep well and I get a full 10 hours of sleep every night. 

Pills.

10. Each day I take: 39 pills. This does not include pain relievers, pain killers, sedatives, anything “as needed”.

11. Regarding alternative treatments: (no change to this answer) I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose:  At this point I would choose anything BUT Lyme disease.  Really…there aren’t many diseases I wouldnt’ choose over this right now. 

13. Regarding working and career:  Finally accepting the fact I may not ever make it back to work.  But I’m not someone who could be happy living on disability (or with my mom forever).  So in a way it’s kind of liberating also, because I have the opportunity in my mid to late 30′s (ugh, that’s so painful) to possibly start over with a whole new career.  One that will foster to the needs I will have as I learn to manage this disease for life.  It will never go away.  I will get better, but it will always be lurking in the background (which oddly enough is exactly how I feel about Mariah Carey’s career).

14. People would be surprised to know:  I cry every day.  Literally ever day.  And most days that’s a good thing.

15. The hardest thing to accept about my new reality has been: Giving up my independence…and the grey hair.  This disease is going to age me a good 20 years.  Pre-Lyme I got carded to see a rated R movie…now they call me Sir.

16. Something I never thought I could do with my illness that I did was:  Get involved, and make a difference.  I know for a fact that I saved lives during the month of May because I refused to shut up about Lyme disease.  That is power. 

17. The commercials about my illness: When I originally answered this I said there were none.  But now there are, thanks to all the hard work of the Paint May Lyme Green campaign, and Ashley and her brother for all their hard work.  Check them out:  http://youtube.com/lymenaide.  The press kits for the TV Public Service Announcements are currently in the mail so look forward to seeing them on your local TV stations soon!

18. Something I really miss doing since I was diagnosed is: (I cry when I read my answer in September, then I thank God I can write again).  write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety.   – My new answer is I miss having my own place.  It really takes a piece of you away when you give up something like that.  No matter how comfortable you may be where you end up. 

19. It was really hard to have to give up: Sugar.  I’m actually looking for a Sugaraholic Anonymous meeting.  Unfortunately with Lyme I’m too weak to take 12 steps (please tell me someone got that joke).

20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell.  (this answer hasn’t changed)

21. If I could have one day of feeling normal again I would:  Dance, Party, spend day in shorts and sandals laughing and living it up with all of my loved ones.  Every single one.  I would have the biggest party with every one of my friends and loved ones, even the ones I only barely like. 

Outside the Doctor’s Office

22. My illness has taught me:  We have to be our own health advocates.  Dr’s may kill us while trying to help us, it’s not their fault if they aren’t educated.  So you have to help advocate for what you need for your health.  And with Lyme, we have to educate our Dr’s to help someone else. 

23. Want to know a secret?  As absolutely freaking awful this disease has been…I wouldn’t trade it for the world.  It has changed my life.  In a lot of bad ways yes, but in more good ways.  I feel closer to my friends and family, I appreciate the little things (like getting out of  bed), and my life will never be the same for it.  Now that the first year of hell is over, I can say this.  But the new “family” of Lymies I have come to love as my own family I wouldn’t trade in the world, nor would I trade the life lessons given me from this awful disease. 

24. But I love it when people:  Buy me things.  Some things will never change. 

25. My favourite motto, scripture, quote that gets me through tough times is:  “Ladies and Gentlement, take my advice.  Pull down your pants and slide on the ice”.  My best friend Gabby’s senior quote.  I am a huge advocate of anything that includes taking your pants off.  (Like jumping in a like, nothing dirty).

Currently listening to: Eminem.  Our lives have become almost parallel I feel.  That and his music is really full of hope (in between prescription pill addiction and dirty words)

26. When someone is diagnosed I’d like to tell them:  Take a deep breath, and never refuse pain killers

27. Something that has surprised me about living with an illness is:  How much I feel like an 87 year old woman (bladder included) on a daily basis.  The other thing I’ve learned is there’s not much I can’t do. 

28. The nicest thing someone did for me when I wasn’t feeling well was:  tell me I look terrible.  Thank you for validating how I feel on the inside. 

29. I’m involved with Invisible Illness Week because: Because now I AM involved.  Lyme disease took my life from me, and I’m really pissed off because of that.  And I’m so angry, I am coming out swinging and fighting.  I will NOT allow another generation of people to get this sick when they don’t have to be. 

30. The fact that you read this list makes me feel: You probably don’t have Lyme, because the list is probably too long for any Lymies’ attention span!

Invisible Illness Week Questionaire (Re-Post)

// June 6th, 2010 // 3 Comments » // LymeBites Blog, Re-Posts

June 6th is Invisible Illness Awareness Day.  I am re-posting something I had written last September in response to living with an invisible illness.  I thought today a good day to share it.  Please take the time today to consider someone with an invisible illness, and please don’t tell us we don’t look sick.  There, now you’ve learned something and can veg out for the rest of the day (after you finish reading the post of course).

This is a re-post from my personal blog written September 20, 2009.  A friend of mine (also a sufferer of an “Invisible Illness”) and I both answered this questionaire about having invisible illnesses.  It’s been a while since I’ve read it, and I’ve recently told a few people about answering these questions at that time (I’m going to answer the questions again now, 6 months later and see what has changed after 6 more months of being sick.  I will post that when I do.)  So I decided to repost it for others to share what it can be like, as well as to see where I was 6 months ago and where I am today.  There are a lot of spelling or grammar errors…instead of fixing them, I’m leavint them so you can see how difficult it was for me at times to even form a complete sentence that would make sense.  The brain fog and cognitive dysfunction associated with Lyme disease and it’s co-infections can be absolutely astounding.  This is something I worked on and edited and corrected before I posted it, it took a while and still ended up with a lot of errors.  But it’s all part of what was going on at that point in my illness.  Also please note this was 5 weeks before I saw an Lyme literate physician.  At this point in time (5 months into my illness) I was being treated by a rheumatologist as best she could until I could get into see a Lyme specialist. 

Hello all. National Invisible Chronic Illness Awareness Week is September 14-20th, ending today. I’ve been asked to join the thousands of others to write something about being a sufferer of an “invisible illness”. It took a few days to be able to do it, but I’m glad I can do add to the many other stories as this week of awareness comes to an end.

1. The illness I live with is: Chronic/Late Stage/Disseminated Lyme Disease, also called neuroborreliosis, which is caused by a bacteria called Borrelia burgdorferi or Bb. The bacteria is a Gram negative spirochetal bacteria, this structure allows the spirochete to move efficiently in corkscrew fashion through viscous media, such as connective tissue. It has a similar genetic makeup to T. pallidum, the agent in found in syphilis. Bb are microaerophillic and slow-growing—the primary reason for the long delays when diagnosing Lyme disease. This bacteriological infection comes primarily as a result of a tick bite but Lyme spirochetes have also been found in semen and breast milk, however transmission of the spirochete by these routes is not known to occur. Congenital transmission of Lyme disease can occur from an infected mother to fetus through the placenta during pregnancy.
Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.
Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites such as bartonella, babesia, ehrilicha, and other co-infections. I believe I am also co-infected with bartonella, a version of cat scratch fever. Lyme Disease is an invisible illness, you can’t always outwardly see the symptoms.

(http://en.wikipedia.org/wiki/Lyme_disease)

2. I was diagnosed with it in the year: 2009. We know I have had it since 2003, every medical problem I’ve had in that time is a direct result of Lyme disease. There is a possibility I’ve had it since I was a child (including a hospitalization for a strange arthritic virus in 1977). There are other time markers that could show when I was infected, including thyroid disease in 1987 and shingles in 1998. What we do know is it’s been ravishing my body for anywhere from 6-32 years until diagnosis with a CDC positive Lyme blot in June 2009.

3. But I had symptoms since: 2003, possibly longer. Since 2003 I have suffered and been treated for the following:

Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)

Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.

Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.

Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.

Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.

In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.

I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)

I have strange rashes on my upper body that have been there for 6 years.

4. The biggest adjustment I’ve had to make is: knowing my life will never be the same. I will get better, I will fight this until I have no fight left to give, but I know I will never fully recover. I know this will affect the rest of my life after recovery. I know my immune system is greatly compromised. A common cold will knock me on my ass for a lot longer than the average person. I know I needm ore sleep than the average person. I know that I can’t handle the stress I used to thrive on. Now it becomes overwhelming and I have to simplify things. The hardest thing for me to accept is having to simplify a life that I loved, full of complications and complex relationships and happenings. I have to mourn that life, and learn to adjust to the life that is ahead of me. It doesn’t have to be a bad thing, it just has to be different.

5. Many people assume: That having Lyme disease is like a flu. Each day means you are better. Lyme does not work like that. The pain in my chest may be gone today, but I may not be able to walk today, or I may not be able to remember how to drive to a friend’s house. The disease changes every day, and effects every part of the body. It takes time, but I don’t think friends and family understand that…they assume having a good day is a sign of healing. It will be months before i begin to get any of my energy back, before I can begin to get better. It’s hard for people who are close to me to understand that. I think they feel in order for them to have hope they need to see quantitative changes in my recovery. Lyme does not work like that. Also, people assume I am not sick if I look like myself. It gives people a false sense of hope. Know that on a good day, or when my body is not twitching, that my body is still racked with pains and sensations I cannot describe. It’s not what you see with Lyme disease that is horrible, it’s what you don’t see. Please understand I may look healthy on occasion, but it doesn’t change what’s going on in my body.

6.The hardest part about mornings are: Normally upon waking there is a 3-5 minute period after awaking where you can’t feel any pain. At first I would think I had died during the night. Now I feel those moments when I wake up, and hold on to them as a reminder that some day I will no longer have constant pain. The first hour after waking up is the hardest. I wake up with panic attacks on a daily basis. I spend the first hour fighting the feeling of panic. With time I can focus in on the reality, and feel better. It is uncontrollable and irrational. I may spend 20 mins worrying about a phone call for no reason, or wake up thinking I’m late for work and need to call in. It takes that full hour to get a hold of my self, to calm myself and remind myself what is going on. The other feeling is pure exhaustion. Often from insominia. The frustration of waking after 10 hours of sleep and feeling exhausted is overwhelming. Today I thought I would have to sleep all day and turn my phone off, because of how exhausted I was when I woke up. But with time, you begin to start moving as best you can fo the day. The other feeling upon waking is doing a full body scan. Does somethiing new hurt? Did anything change during the night?

7. My favorite medical TV show is: Scrubs. Laughter truly is the best medicine.

Two important things: My iPhone. When I wake up it’s filled with msgs from my loved ones checking on me as a new day begins. I’d be lost without it. My medicine caddy is the other important item. From antibiotics to pain killers to Benadryl, I live out of that little caddy to get me through each day.

8. A gadget I couldn’t live without is: Remote. Many days while the world goes on without me, I rely on my TV and DVD player to keep me entertained and keep my mind off of what I’m missing.

9. The hardest part about nights are: Insomnia, feeling alone in the middle of the night when you are so tired you can’t keep your eyes open, but the pain and sensations going through your body cause you to jerk uncontrollabley to the point you end up rolling aound on the floor moaning in pain. Many mornings I’ve woken up on the floor of another room, having finally fallen asleep there.

Pills.

10. Each day I take: 46 pills, and 5 liquid supplements. This does not include pain relievers, pain killers, sedatives, anything “as needed”.

11. Regarding alternative treatments: I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: I’d never choose either. I’m blessed with amazing friends and family, I don’t have to convince them I’m sick with my “invisible illness”. Chronic pain is chronic pain, I would not choose it either way.

13. Regarding working and career: on hold. In 4 months I’ve missed over 500 hours of work. I’m lucky I work for the gov’t, where I have benefits and programs to help me, otherwise I would have been homeless months ago. I think what I’ve accomplished in my 11 year career with the state, all the while having Lyme disease. Some times I get sad wondering what I might have accomplished with life had I not been sick, but I can’t dwell on the past, I need to concentrate on the future. I have every intention of returning to work and my career.

14. People would be surprised to know: Many Lyme patients take their own life before ever getting better. I feel for those who suffered so much they felt they had no other choice. I could understand feeling that way if I did not have my amazing friends and family here supporting me. I want to fight for those who are too sick to fight for themselves. I am going to get better, and make sure that no Lyme patient ever feels they have no other option other than taking their own lives. I will devote my life to fixing this. No body should have to suffer in such silence. The other thing is people saying “you’re amazing” for doing this. Doing what? Fighting for my life? I do not feel special because of this fight, I do not feel strong or empowered. Some days I struggle to wipe my own ass in the bathroom. That is not a feeling of empowerment. People say how amazing Lyme patients are for fighting, but they are wrong. It’s not a fight we chose to fight. We are all in reactive mode. I’m fighting for my life. To stay alive, to get my life back, to help others. I don’t feel special because of that, I feel human…I’m doing what I need to do to survive, that’s all.

15. The hardest thing to accept about my new reality has been: the Losses. Friends (it seems hard to believe, but you lose friends…not because they’re evil or mean, but some can’t deal with it. For some their life goes on without you. It’s so hard to see your life go on without you in it. Also I miss work…I miss the satisfaction of doing a good job. I miss the chaos of working in a budget office. I miss the socialization, I really love my coworkrs, they are more than friends to me. I miss all of that.

16. Something I never thought I could do with my illness that I did was: Tell people what they really mean to me. This disease has brought me so much closer to my family, my friends, my circle of life. I’ve learned to really appreicate the little things having people in my life means. Maybe without being sick I’d always take that stuff for granted.

17. The commercials about my illness: There are none. Thankful for Under Our Skin and the awareness that this documentary is bringing worldwide to Lyme disease and the politics behind it. (http://www.underourskin.com)

18. Something I really miss doing since I was diagnosed is: write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety.

19. It was really hard to have to give up: Everything. Lyme has taken everything from me in the past few months. I fight daily to get it back. There’s nothing harder than giving up your life.

20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell.

21. If I could have one day of feeling normal again I would: Go clubbing with friends. I’d dance. I’d lay in the sun with my friends and laugh at inappropriate jokes. I’d go for a walk without having my leg give out on me. I’d make up for all the times I’ve had to cancel or miss out on time with loved ones.

Outside the Doctor’s Office

22. My illness has taught me: Dr’s cannot be trusted with your life, you need to take some responsibiliy yourself. If I let the Dr’s be in charge I’d be in a wheelchair now wondering what was wrong with me, being told I was “cured” by gov’t guidelines. It has also taught me love is not pretty. It’s not well dressed, well groomed, and it doesn’t always smell good. Love can be ugly, but it’s the most wonderful thing any of us can ever feel.

23. Want to know a secret? I’m scared to death. Every day I wonder how much longer I have. It makes me fight so much harder. At the age of 36 I should not be so concerned with my affairs being in order, because I know my heart could stop from Lyme disease at any time. It’s not likely, but it’s scary to have that realization out there. My motivation for fighting is in part fueld by fear. I’ve learned to play “in character” when I’m with friends, the role of who I was. But in the back of my head I’m always scared of what this disease may do next.

24. But I love it when people: laugh with me. It’s funny when I put the dishwasher detergent in the freezer and the ice cube tray in the cabinet. If I didn’t laugh, I’d cry…I’m lucky to have friends to laugh with me when I can’t think of the right words or forget their names.

25. My favourite motto, scripture, quote that gets me through tough times is: (I’m stealing this from another Lymie…it really sums it up)

Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.
-Neil Gaiman

Currently listening to: DMB Groogrux King, and Eminem Relapse. Also Coldplay seems to have a calming effect on bad days.

26. When someone is diagnosed I’d like to tell them: This is where you have to take your health in your own hands. If you have a Dr who tells you anyhing you don’t agree with, you can find help elsewhere. Do not take what your Dr says as truth…you need to be actively involved in your own health and recovery. I’d also tell them they have a friend in me, and all the info and resources I’ve spent 4 months getting together, let me help you if you don’t know how to help yourself.

27. Something that has surprised me about living with an illness is: How hard it is for people to accept you are sick. That health insurance, thta which is supposed to help us, is usually against us. That Dr’s do not know everything. And that friends and family will always be the best medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: I couldn’t list one single thing. From my friends doing a benefit to help me pay for my treatment, to a random phone call or email sending me healing wishes and letting me know I’m loved. The list is unending of what they have done for me while sick.

29. I’m involved with Invisible Illness Week because: Because so many of my friends suffer in silence with their own invisible illness. MS, Fibromyalgia, Chiari…this isn’t just about me, or Lyme disease. This is for everyone who has one of these illnesses that destroys you from the inside out. I need people to understand how sick I am. I need people to get involved. I need people to protect themselves and their children from suffering like this. The more people know what’s going on inside my body, the more likely they will be to take action for themselves in the future.

30. The fact that you read this list makes me feel: like there is hope…we can spread hope quicker than a bad case of Herpes on Prom night. Let’s let hope and knowlege spread quicker than the disease, together there is something we can do. Let’s do it!!!

Helpful Hint #1

// June 4th, 2010 // 2 Comments » // LymeBites Blog

The absolute worst thing you can say to someone who has Lyme disease (or any number of “invisible illnesses”) is “you look great”.  Perhaps we don’t look sick.  Perhaps we do and you want to make us feel better.  But saying that to someone with one of those diseases makes the person feel defensive, like they have to then prove to you that they are sick. 

Most of us look healthy.  Maybe we limp, or have twitches, but for the most part we look fine.  But if you could spend an hour inside our bodies you would certainly never say that we look fine knowing what we are going through.  But because we are not missing body parts, or covered in lesions and wasting away to nothing, people seem to think that if you look okay, you must feel okay.

That is not the case, and if you ask any one of us suffering from these types of diseases most everyone would ask you to please not tell us “but you don’t look sick”.

I’m beginning a series of helpful hints for families and loved ones of Lyme disease…along the lines of the things that most of us are not willing to tell our loved ones, so I’ll do it for you.  If you have any ideas of helpful hints I can share please email them to LymeBitesDotCom@yahoo.com.

Thanks from Eric and the thousands of others who suffer from invisible illnesses.

So This Is It?

// March 26th, 2010 // No Comments » // LymeBites Blog

Today has been anything but good.  It hasn’t been bad though either. 

I had a bad night of trying to sleep, and my bladder (and an annoying cat) made it hard to get any quality sleep after about 6 this morning.  At 10, after a measly 9 hours of sleep, I gave up and got up for the day.  I felt terrible.  Inside and out.  The novelty of my new “room” here in my mother’s family room has long since gone away.  I feel surrounded by boxes of stuff I have nowhere to put.  I’m not really unpacking them here or putting the contents anywhere, but it’s stuff I don’t want in storage.  In the meantime I feel like the boxes are beginning to smother me.  But that’s all cosmetic stuff, things you think laying in bed at 10am wondering what to do with your day. 

It took me about an hour and a half to get out of the house, but I managed to get out into the sun for a while before the rain was set to arrive.  Too weak to drag my laptop to the bookhouse, or to the park…I brought my pens and notebook, sat on the Hudson watching flood debris float by and did some writing.  It didn’t take long for my energy to be completely shot, and anticipating afternoon plans I headed home. 

Instead of afternoon plans I felt worse.  I didn’t take any Advil or anything today, and by 3pm I was left wondering what is happening to my liver and kidney’s when I can’t make it past 3pm without some form of pain medication.  I realized something is wrong when you don’t go any 24 hour period without something.  So what do I do?  Pain management?  To me that means staying in bed and never going anywhere.  Lyme pain is not something you can “manage”.  Maybe you can live with it, but you certainly can’t manage a life.

This morning I told my mother my stomach was unsettled, but I had just finished taking my 23 pills and supplements this morning.  “A year ago 23 pills would have been a cry for help, now it’s just breakfast.”

So I’m left wondering how to balance chronic illness with life.  I’m not one for accepting being unhappy or miserable.  I can’t find any light or happiness in just laying here day by day, and I wonder how I can possibly heal or recover without light or happiness?  But I just push myself from one day to the next just to steal moments of normalcy, anything than spend my days in a bed in my mom’s famly room. 

Without a miracle I will have no choice but to live here for at least the next year.  It’s likely to be more like 2 or 3 years, but the reality is it’s not just a visit…I will probably live here for longer than I lived in my last apartment, so that’s not going to change.  The best I can hope for is 80% of the person I was before I got sick, so the disease or sickness isn’t going to change.  What’s gotta change is my willingness to just accept it, put my head back on the pillow and go back to watching TBS reruns all day waiting for those good days every 2 to 3 weeks, when they appear. 

So on that note I need to learn to re-live my life all over again.  What I’ve put the last 36 years into is not gonna work out so well for me at this juncture, so I have to find a way to accept it without being miserable the rest of my life.  But what I can’t figure out is how to be anything BUT miserable for the rest of my life knowing this is what my life is now.  What do you do then? 

Maybe that’s a rhetorical question…maybe I need ideas from you, unfortunately my oxygen deprived brain can’t even figure that out right now. 

We’re approaching a year now that I’ve been sick, the life I lived is nothing more than a distant memory…I feel like I’m picking team members for some sort of game and all that’s left to choose from is the overweight, short, uncoordinated kid who can’t catch the ball, let alone play the game.  That kid is life with Lyme disease, and if I want to play the game I have no choice but to accept it.

Mary McDonnell Talks On Lyme Disease

// March 16th, 2010 // 1 Comment » // Lyme Media, LymeBites Blog

A friend posted this on facebook tonight, Mary is the spokesperson for the Lyme Disease Association (www.lymediseaseassociation.org).  I really love the way she discusses the grief of Lyme disease.  When she talks about going from being in charge of million dollar budgets to not being able to Target I can relate.  Until I got sick my job was a Senior Budget Analyst with the state of New York, my job dealt with million dollar budgets…and I actually got lost trying to find Target once.  I know I’m not the only one who has these problems from Lyme, but it’s nice to know someone else is having the SAME problem as I am! 

Great 9 minute talk on Lyme, I highly suggest you take the time and listen to it.  ESPECIALLY if you are a family or friend of someone with Lyme…I think it’s important for them to realize the process every person who becomes so ill with this disease goes through, including grieving the loss of so many facets of life. 

And for those with Lyme, as always it’s nice to see someone say something we can directly relate to.  While many of us have found amazing online resources and groups of people just like us, sometimes it’s hard to remember that there are other people who are going through the exact same thing we are on a day to day basis. 

Mary McDonnell Talk On Lyme Disease – Click Here