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Tuesday, October 25, 2011

Jenn's Note

Here is Jenn's note! I hope this is as much of an "AHA moment" for anyone who is struggling with these symptoms as much as it was for me!
I started to write this email to a friend, and then another came to mind, then another. Instead of writing emails to each one, I decided to write this note on Facebook. I contemplated sharing this so ‘publicly’ but I feel led to share a bit of my experience in case something in it helps someone else...being now able to 'customize' who this isn't visible to on FB helped me to take this step. I will warn you, it’s lengthy...be sure you have a few minutes to read or just skim or jump to the end. :)

Seven years ago I was a busy teacher living in Toronto. After teaching for four years and being very involved in my school, I noticed things started to change. I was often getting tired and worn out. That year I had the privilege of team-teaching with a friend and she was pregnant. I was usually the one feeling tired, worn out and in need of sick days more than she was. That was my first indication that something may be wrong. That same year, we were also trying to become pregnant unsuccessfully. My whole body just felt ‘out of whack’. I couldn’t really explain it, I just didn’t feel like myself. It must be stress. I must just be worn out. I visited six different doctors at different clinics (an advantage to city living) to try to figure out what was wrong with me. I was exhausted, unable to get pregnant, my memory was awful and I just had this constant ‘fog’ about me. Most of the doctors would dismiss me saying I “looked” healthy, I just needed to relax more etc. None of them seemed to REALLY listen. I believed them and just kept getting mad at myself for not being able to ‘pull myself together’.

Nathan & I decided to move back home to Nova Scotia soon after and made the decision that I would go on unemployment and do NOTHING for the following 5 months in an effort to recover. Most days, I slept 11-13 hours and always had to nap during the day. By lunchtime each day, I was dragging my feet. I used to be SO energetic and involved. Was it because I was getting older? Was this normal? Something just didn’t feel right but again, I couldn’t find an answer. I decided to start journaling so that I could write down what was happening to me. Some days were better days. Most days were harder. But eventually I began to accept that this was my “normal” and adapted the best I could. This meant I had to accept that naps were a part of my day. Not 20 minute naps, but 2 hour naps. My memory got so bad that I now have post-it notes in every single room of my house, in my van and just about everywhere that I spend time. When something comes to mind, I write it down. Otherwise I will forget, sometimes within a couple of minutes. If you asked me what I did yesterday, I need to really sit in in silence and think about it. I used to be able to remember all 150 student names that I taught, or every single campers name at the summer camp where I worked. Now my memory was the pits.

When I returned to teaching in the fall, my energy continued downward. It was hard to even have a conversation with someone as it took so much effort. I began avoiding people and avoiding going anywhere unless it was necessary. I have a perfectionist streak and would give all the energy I had to teaching during the day and would have nothing left outside of my classroom. Even that year at the school, I made little effort to get to know the staff or be involved in anything extra-curricular. It wasn’t because I didn’t want to, I really didn’t feel I could. I was just so so tired. Everything required effort. That year, I decided to do some more investigating. I was referred to an endocrinologist and found some more ‘clues’ but no real answers. I also began seeing a naturopath.  I was trying every angle possible as I just couldn’t shake the feeling that something just wasn’t right with my body. The best way I could explain it was that my soul – the REAL me – was trapped inside a body that wasn’t working right. I felt like many days I was just existing, not truly living.

Over Christmas break, I ended up in emergency after being bedridden for 3 days from pure exhaustion. What was going on with me? They found my thyroid levels were abnormal. Finally something! Then two weeks later they were normal again and I was told I was ok and to continue on with life. I was going downhill fast and I had no idea why. I decided to leave teaching that year as I didn’t have the energy to sustain each day anymore and also between this and fertility issues had no idea how we would have a child.

Over the next couple of years, life did become easier because I was able to be at home and no longer had any major obligations. It was a major shift for me because my whole life I had been so involved in a lot of things – now I felt like I was doing nothing. I had to learn to accept myself without being dependant on the praise and feedback from others. Anytime I looked like myself and had energy were the times I would dare to venture out – so people usually only saw me during my ‘good’ days. But even then, I had to choose my ‘outings’ carefully. During a day, or even a weekend, I could often only usually do one ‘outing’ – whether it was grocery shopping, church, the mall etc as I would be so worn out afterwards. I soon even found it hard to go out in the evenings to movies or anything that required me to stay out past 9pm. How sad is that!

Eventually, after being at home and reducing most stress – good and bad – in my life, I was able to rebuild some energy and feel a bit more ‘normal’. Even then it was a daily balancing act, always carefully planning my weeks as many things like taking a day trip would take me up to a week to recover. As my life simplified, it forced me to focus on the things that were the most important, as I had no other choice. In some ways what seemed like a curse also became a blessing in disguise. I accepted this life more and tried to start focusing on the blessings that were coming from this journey the best I could. I was able to work from home for my dad’s business which was a major gift as it supported my life as it was now. During this time I was able to find some clues – one of which was being diagnosed with PCOS, and also that I was insulin resistant so my diet had to change (low glycemic). I had to accept that this was me now and to continue seeking answers, but to stop beating myself up over what I couldn’t control. So naps became part of my day. I resisted them so much initially because I just wanted to be like everyone else and be able to get through a day. But how fortunate and blessed was I that I HAD the opportunity to be able to nap each day, so that I embraced as God-given. As I fell into a routine of acceptance, I could see how things had come together to help me through this struggle. I journaled often, I could SEE direction and I began to learn the truths and lessons I was needing to. The importance of family. Letting go of so much of what our culture teaches is important. My heart’s purpose needed me to learn to BE STILL. My tendency has always been to be so busy and do, do, do that the blessing of this was that I HAD to stop. People came along in my journey during those years that specifically reinforced these truths over and over again. God was showing me a lot of GOOD from this journey.

When I regained some energy we made the decision to move ahead with fertility treatments after three years of not being able to get pregnant, as we were unsure as to how long it would take and whether or not it would be successful. We had our first baby in 2008. I knew I would be tired – and probably more than the average person because of my low energy – but I never prepared myself for a colicky baby. Looking back, maybe that’s why Karsten came to us because he needed someone who was able to just BE and not be busy. Since I didn’t have energy anyway and was often tired enough that I could sleep in just about any position including sitting up, it wasn’t too far of a stretch for me when I needed to spend much of his first few months of his life with him sleeping on my chest, often upright because of his reflux and colic issues.  Most normal-feeling mom’s likely would’ve been crazy, but since I was now used to such a minimal day, it came in handy when making it through that first year with a ‘high needs’ baby. It was tough but I always looked at him with such empathy and love as I knew it wasn’t his fault. After the first year, things became much easier and I was able to start focusing on my health again. By this time, I was so used to having no energy that I pretty much started to forget what ‘normal’ felt like. Between a new baby and my health, life just became as we knew it. We adapted and Nathan was amazingly supportive in many ways. We also decided to move my parents next door so that they would be close by and able to help support me. They could see the significant change in my energy over the years and wanted nothing more than to help me in whatever way they could.

We were nervous to have another baby since our memories with the colic were still so fresh and my energy not the best but we knew we wanted Karsten to have at least one sibling. We moved ahead with fertility treatments and prepared ourselves as much as we could for another anticipated difficult year. This time though we had the help of my mom and dad next door and a better understanding of what it may entail. Nolan was born in 2011 and he was an ANGEL baby. I was so so thankful. God knew he was just what we needed.

When Nolan was born, all was going better than expected. For the first three months of his life, I had the most energy that I had had in years. It reminded me of what I used to feel like before this all began. It wasn’t until Nolan was three months old and all of a sudden, it’s like all my ‘feel good’ hormones were now used up and even though Nolan was such a good baby I was again finding myself falling down into the struggle of no energy. Not just tired from caring for a new baby but EVERYTHING was soon becoming a monumental effort. My energy was zilch and depression – something that had come and gone in intensity over these last few years was now in full force. I had to self-talk myself to go up the stairs, get dressed, play with Karsten. Thankfully Karsten had his grandparents next door and he went to a sitter’s house here and there to get out. It soon became so bad that Karsten was eating Goldfish crackers for lunch and pretzels for supper. No meals were being made. I rarely could get myself out of the house without planning ahead – to build up my energy and mentally prepare myself. Each weekend I had to decide if I was going to get groceries, go to church or go to a birthday party etc. I usually could only manage one thing, otherwise I would be exhausted and unable to function for the rest of the week. My mom helped with groceries. I would only get to church on occasion. And I managed to show my face around here and there so that I still had some semblance of a social life.

I was getting desperate as I knew that this wasn’t normal. Yes, I had a busy toddler. Yes, I had a new baby (who was easy!). But my gut was telling me that all of this – these last 6 years of feeling like I was always swimming upstream - just wasn’t normal. Something inside me just knew I HAD to find an answer. I had so many clues and ‘puzzle pieces’ from journaling through these years and just felt SO close to the answer but needed to find a professional who would listen, validate them and help me. After Easter weekend, I reached out to a close friend and made the decision to take another step of faith. I didn’t have a family doctor – and my initial plans were to wait until next year when I had one before returning on this journey. Nolan’s 4 month needles were coming up and I really respected his doctor. We had a casual conversation when he was born about my energy as in the (8+) weeks after he was born I felt great and my energy actually finally felt normal – ironically as most new moms would probably say they had LESS energy in the weeks after having a baby - but it was because my post-pregnancy hormones helped to get everything a little more balanced. This doctor gave me the best gift... she REALLY listened. At Nolan’s 4 month appointment, I decided to try to share my story with her and to my surprise she not only listened, but grabbed her pen and paper and started writing. She asked questions. She VALIDATED everything I said. Of all the doctors I had seen, she CARED and was concerned. Her words were “Jenn, you have been dealing with this too long. It’s time to get to the bottom of this”. I wanted to hug her. She sent me for a ton of tests. She did a whole work-up of my profile. Asked me dozens of questions. Just really took the time I had needed. And...she found the answer!

She said it’s still difficult to pinpoint the root cause because there is still so much research going on, but it’s starting somewhere in either the hypothalamus or the pituary gland which then affects a lot of your body’s hormone connections like a domino effect.  Basically it means I am dealing with a bunch of effects that include a deficiency in norepinephrine (which contributes to low energy, depression, poor memory etc), infertility (and Polycystic Ovarian Syndrome) and Insulin Resistance (which is why my blood sugar/insulin were similar to a diabetic). The norepinephrine deficiency was what was significantly contributing to my lack of energy. On one test a score of ‘30’ was considered a severe deficiency, and I scored a 61. Basically everything was inter-connected. Which explains why I was always figuring out so many ‘puzzle pieces’ but could never pinpoint what was actually wrong. There’s no “cure” for this and I will need to take meds and watch my diet for life - like someone who has diabetes or a lifelong issue where they can do things to help maintain it and give themselves the best quality of life with it.

Let’s just say my LIFE is changing. Within days, I could feel my energy increasing. It’s the first time I have felt CONSISTENTLY like me in 6 years. My first realization was when I took Karsten and Nolan and went browsing at the mall. I never would’ve been able to do that before. You would think Karsten was in Disneyworld, that’s how often he has been there! I was just looking around in awe, with just a new fresh outlook on so much of what I used to take for granted when I did have energy. I kept looking at people thinking “is this what normal people feel like?”. It had honestly been so long, that I forgot what it felt like to feel ‘normal’. The first week I took the boys out every single day – whether it was shopping, the playground etc. Not only could I take them out, but I WANTED to take them out. I was now able to make meals daily instead of just haphazardly. When I woke up in the morning, I looked forward to the day instead of waking up and counting the hours to nap time and then to bedtime. My life was changing before my eyes.

Today I have energy. Today I am ME. And for the first time I am ME without strings attached. No people to please. No one's approval to seek. No meetings, no committees, no busy schedule to keep. A full 180 on my life since this journey began. Once a busy, Type-A, go-go-go personality I wanted to do it all, be it all. With good intentions – to help others, to do good things. But with that comes the danger of losing track of what it truly important. All can be GOOD things but it’s also important to keep the most important things priority, be OK with having to say no and to take care of yourself – body, mind, spirit. I often would wish and pray that I could have a life – or even a day – when I wasn’t just so darn busy. Be careful what you wish for! ;) Through these last few years I was forced to learn to let go and base my worth on the plain truth of God's love for me and His plan for me. Nothing more.

A new chapter in my life is waiting to be written. This time around I am going to do my best to be discerning with my energy and hopefully never take it for granted. I am going to focus on the things that matter most – faith, family and friends. It’s funny how everything else seems so important when you’re in the midst of it, but when you are FORCED to let go, you can really see in the end what truly matters most.

Will I go back to teaching? Will we have more children? What will I do with this ‘extra’ energy? I don’t know any of those answers. What I do know is that I desire more than anything to take one day at a time. To learn to live in the present. And to keep the important things at the center.

I now have such an empathy for people who are struggling – especially with the 'invisible' struggles. I look at people differently. I realize that what we may not understand about someone – why they’re snobby, why they cancel their plans with you, why they don’t keep in touch, why aren’t they having children yet etc – may be a much different reason than you may know. Even if when you see them and they are smiling, they may also be struggling – whether it’s with health, depression, worry, fear or anything else. We can be sometimes quick to judge people and their decisions and life without ever really knowing their story. Everyone has a story and I have all too often made assumptions and judgements about someone without ever knowing theirs. I hope that from this day forward, I will treat people differently.  There are many people facing their own struggles but what I am seeing now is how often what seems like we are facing alone is in fact a struggle shared by so many others. It’s amazing that when I open up and share with someone now, it seems like there are SO many of my friends and people in general who are struggling personally – or close to someone who is struggling with what is often ‘invisible’ – whether it’s low energy, depression, infertility, anxiety or something else. And even worse is that most times you feel like you’re the only one.

This journey has given me many gifts. An affirmation to TRUST my gut/instincts/heart even when it doesn’t quite make sense. A deeper EMPATHY for those who are going through health issues, especially the more 'invisible' ones like depression, infertility etc. A new perspective on how much ENCOURAGEMENT can truly impact someone.  A realization on what is truly important in life. Not to over-busy, over-stretch and not to take my energy and well-being for granted. The power of PRAYER.  The importance of FAMILY. To PERSEVERE and follow your instincts. The gift of GOOD friends. To LIVE in the moments and blessings of TODAY. TRUSTING God with my life - both the details and the big picture. That GOOD can come from what seems like bad. The importance of taking CARE of myself: mind, body, spirit.
Thank you to each one that over these last few years has been there for one step, or many steps as I journeyed through this. Whether it was a listening ear, your empathy, a hug, sharing your own wisdom, opening up to share your own struggles and your encouragement. I have no doubt very specific people were at certain steps of the way for very specific reasons and I look back at these last few years with gratitude and awe at the lessons, growth and wisdom I have gained from this.

I've realized I don't need to know all the answers, I just need to trust the ONE who does. I just need to take ONE step at a time...ONE day at a time. I am truly thankful.

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