My story is one of denial. I come from a very long line of people that don’t complain. I could be the poster child for the British saying “Keep Calm and Carry on”.
I know it’s weird, but I have this belief that if I don’t admit to an affliction then I have a better chance of ignoring it. Even in excruciating pain my mother would smile and say she was doing great and thanks for asking.
I totally blame myself for taking so long to get diagnosed. But seriously, who wants to be around a complainer anyways?
I have a great, supportive husband and two kids, but even they didn’t know how sick I was. I loved my job as a college instructor and looked forward to work each day (…well OK, maybe not all those mountains of marking).
I was convinced that if I told a doctor about all my weird and continually changing symptoms then the doctor would think I was losing my grip on reality. So it just kept telling myself I was OK.
When I first started to feel “off” about 5 or 6 years ago, my family doctor was away on maternity leave and her replacement said my thyroid was low. I had one half of my thyroid removed when I was 17 so this was a perfectly normal thing to happen. Great I thought—this is easy to fix and I’ll be back to my old self in no time. He recommended that I see my specialist, but I knew he was approaching 80 years old. I wanted to look at alternatives.
I searched online and found Dr. D. He put me on natural thyroid meds. I saw some improvement, but I was also starting to have a lot of fatigue. I chalked it up to menopause and working too hard. I was sure I would feel better tomorrow.
I was working out 4 or 5 times a week and had to stop because I was tripping on the equipment and several times I lost my balance. I was so tired that at times I thought about curling up under my desk at work between classes. It was taking me twice as long to mark assignments because I was having trouble concentrating.
I tried to ignore the changes in my life but I was really disappointed that my quality of life was slipping into a downward spiral. Was this the start of old age? I was in my 50’s but felt older. I reluctantly told Dr. D. that I was really tired (I felt like I was just complaining again) and he did more tests. I just couldn’t tell him about all my other weird symptoms because they seemed to move around and change on a weekly basis. It turns out I had adrenal gland fatigue. Dr. D. never made me feel like I was complaining. Supplements and IV treatments helped with the adrenal fatigue but I still wasn’t my old self.
I started to notice other things. I was having irregular heart beat and sometimes in the night I would wake up and my heart was going ninety miles an hour. Always looking for the positive I thought I would be losing weight in my sleep. It seemed funny at the time but since then I have learned that it can be serious. I started to gradually have a lot of other symptoms such as having trouble getting to sleep and staying asleep, aches and pains throughout my body, more severe balance issues, lack of short term memory, organization issues, etc. I told myself I would feel so much better with a good night sleep and there was no need to talk to the doctor yet again.
I started to entertain less, take on less extra responsibilities at work, shifted grocery shopping and laundry to my husband and left more of the cleaning to our cleaning lady. Before I realized it my world was becoming smaller. It was the only way that I could cope. I was still faking it though, and telling myself I would feel better tomorrow. However, in reality I was starting to have a sinking feeling that there was something really, really wrong.
The invader is unmasked:
Dr. D. did some more tests. When the results came back, they indicated that I had Lyme disease. I had no idea what Lyme disease was or how I got it. But it looked like I had the disease for a long period of time. Dr. D recommended that I see Dr. M. in the US as it is very hard for doctors in Canada to treat people who have long term Lyme Disease.
A few weeks after booking the earliest appoint with Dr. M (which was still to be months away), I had a real scare and a reality check. In a college class that I was teaching, right in the middle of the lesson, I suddenly had a very irregular heart beat. I lost my train of thought and could only think about was sitting down on a desk and breathing. I nearly passed out. I thought about how scarred the students would be if I had a heart attack in front of them.
Somehow I finished class. It happened again two days later, only worse. I had to face up to the reality that I was sicker than I thought. That week, I had nearly fallen backwards down the stairs twice. I also notice that I was starting to drag my feet, especially when I was tired. I hadn’t mentioned these symptoms to Dr. D. I was still faking it and not being honest with my self. I thought he might think I was losing my mind.
It was time to come clean and my husband who had seen me declining quickly was determined to come with me to see Dr. D. to make sure that I was disclosing all my symptoms. The reality was that although I loved my job I could no longer work. It wasn’t fair on the students or myself. Dr. D confirmed my fear that I wasn’t well enough to work. I finally gave myself permission to admit that I was really sick. But admitting this fact was also giving myself permission to attack this disease that was attacking me and to work on getting better.
My appointment with Dr. M in the US was still a few months away, but meanwhile I started researching Lyme disease. My main research was going to be on how to get better fast. I was overly optimistic and quickly learned that Lyme disease is often misdiagnosed, very hard to treat and takes a long time to treat if you’ve had it long term.
For me, accepting and admitting that I was really sick was just as much of a challenge as dealing with the diagnosis and treatment issues.
So what did I do?
I skipped the self pity party and went right into admitting to the disease in the biggest way that I could think of: with a Facebook post. It read “Although I have Lyme disease it doesn’t have me”. You see, even on a bad day I was going to try and find something positive to say.
If You go out in the Woods Today
When my kids were little this was one of the songs we would sing to them. “If you go out in the woods today you’re in for a big surprise”. That surprise was a teddy bears picnic. Today your surprise could be a tick bite. Not a picnic! I never got the bullseye rash that you hear about. I don’t remember being bit at all. However, we spend our summers at a cottage in Ontario and I get bug bites on a regular basis. I just ignore them.
I used to be in the woods by the hour cutting dead trees down with my little chain saw and pruning trees and raking. I was sometimes in there in my bathing suit on a hot day. It’s easy to get a tick bite that way. I still venture into the forest but I wear a long light colored shirt. I tuck the shirt into a pair of light colored pants and tuck the pants into a long pair of boots. I check for ticks when I come out and try to go for a swim or shower right away to get rid of anything I can’t see. I haven’t seen any ticks but I’m not taking any chances. You can spray deet all over too.
It’s important not to be bitten by a tick or to deal with it as soon as you are aware of it. I missed seeing that little tick and it pains me to think that I could have been treated with just two weeks of drugs, instead of the very lengthy course of antibiotics I’m now on.
What worked for me
Everyone is different but here are the things that really encouraged me and worked well for me in dealing with this complicated disease.
1. People that prayed for me and repeatedly told me they were praying for me.
2. Being around positive people. I’ve always been this way but even more so now. Anything negative lingers with me and can bring me down long after the giver or that negativity has moved on. I just don’t need to be around it.
3. Talking to other people that had Lyme Disease and learning from them and realizing that you’re not alone.
4. Focusing on getting better and not what was hurting on any particular day.
5. Allowing myself to make one complaint a day. Just one! It’s hard but it takes the focus off the pain and shifts it onto getting better.
6. Having a special person to encourage you. Mine was my cousin that lives in Vancouver and even though I live in Toronto she was able to phone, send cards and thoughts that encouraged me. Often her cards contained a little metal angel. I placed one in my purse and one in my medicine carrier.
7. Making a chart for my medications. It is far too hard to remember when to take what. The chart and meds go with me when I travel or visit friends.
8. Listening to my Lyme Literate Doctor (LLD) and following her instructions.
9. Sticking to my diet: no sugar, yeast, flour, vinegar,….etc. This takes lots of will power.
10. Carpe Diem – Seize the day if it is a good one and just kick a bad day in its sorry old butt.
11. Being grateful for friends and family that were supportive. They understood that on a bad day there was little I could do but on a good day I could go out for lunch or have a short visit.
12. Reward yourself everyday. My guilty pleasure was a Granny Smith apple dipped in unsweetened chocolate with a touch of Stevia. I went to “my happy place” and forgot all about Lyme Disease. Even a few minutes vacation from Lyme Disease it a much needed break.
13. Adopting an attitude of “I have Lyme Disease but it does NOT have me”
14. Going to a Lyme Literate Doctor (LLD) in the US for treatment guidelines and having a very knowledgeable doctor in Toronto who can follow my progress.
15. Accepting that not everyone can be treated with natural/herbal treatments and some people like myself need heavy doses of antibiotics.
16. Imagining that my antibiotics were like Pac Men eating up all the bad bacteria.
17. Trying not to get caught up in my own issues and remember to think of others. They have their own things to contend with.
18. On a good day doing something that made me feel normal such as a pedicure or manicure or out for lunch with friends.
19. On a bad day giving myself permission to take up residence on the couch and watch B&W movies all day.
20. If I’ve misplaced something or lost one of my long notes (so I don’t forget things) then I would try to let it go. It probably wasn’t that important anyways.
21. But never, never feel sorry for myself because there are so many people that are worse off.