Glimpse into Postural Orthostatic Tachycardia Syndrome

In March last year, I wrote a post about my recent diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). You can read it here. I did not go into great depth with an explanation of what this syndrome is, as I was still taking it all in. I was fortunate to have learned a lot about this condition prior to my own diagnosis as a family friend has suffered from it for years, however I had a lot to learn about how it affected me. I want to share more of my experience with this now, and what POTS is.

POTS covers quite a broad array of symptoms. What is prominent for one person, may not be such an issue for another. Treatment options are also extensive. There is no cure for POTS, and what works well for one patient, may actually make another worse. Subsequently, experiences of dealing with POTS can be varied, so what I may write might not be suitable or relevant for you.

As the name suggests, Postural Orthostatic Tachycardia Syndrome revolves around an issue with an abnormally increased heart rate when changing position, typically from supine to upright.
When all humans stand, gravity causes a shift in blood from the head to the lower parts of the body. In a healthy person, the heart rate increases slightly, the heart pumps stronger, and the vessels in the lower part of the body constrict, all ensuring the blood is pushed back up to maintain a healthy blood flow in all parts of the body. This all occurs in about 2 heart beats.
In someone with POTS, the heart rate increase does not result in improved blood flow, the vessels often do not contract efficiently, the blood pressure may drop drastically, and the heart rate continues to increase. There is then a decrease in cerebral blood flow, resulting in light headedness or fainting. The high heart rate is considered to be a sign of POTS when it is increased by more than 30 beats per minute upon standing, or to a heart rate greater than 120 beats per minute within 10 minutes of standing still.

Although POTS is an issue which results in a heart rate and blood pressure issue, it is not actually a problem with the heart. The problem is with the autonomic system, which is the body's involuntary nervous system that controls the actions that we do not need to think about, such as sweating, breathing and heart rate.

Glimpse into fighting for the life you want to live

Having chronic illnesses is like being a tightrope walker, juggling twenty different balls, with one arm tied behind your back and a blind fold over your eyes.

 *

You are forever fighting against losing every aspect of your life which is important to you, while at the same time finding the delicate balance of where to step so as to not over do it and make yourself more unwell. Sometimes I fear that I have dropped too many things - I do not work, I can not study, I do not exercise, I barely attend social functions, I often can not do my hobbies, I have moved back in with my parents; so much of what makes me me is currently not part of my life. Sometimes I feel so shaken and distraught by the thought that I am getting older and I am missing out a crucial part of my life. I know that I have fought; every day I work towards better health. I know that I do not make excuses, I have definite goals, and I am determined to reach them. The body's weaknesses are hard to beat though, and I am on a long, slow road. Finding that happy medium, where you do not give up, where you battle against the odds to reach your goals, and where you do not push too far that you create damage; that is the real challenge of living with chronic illness.

Reassessing what you want from your life is often part of the answer. Making realistic goals will get you further. I have posters on my wall with my goals written on them. These goals are not the same as the ones I had 2, 5, or 10 years ago. Some are smaller versions of them. Some are completely new ones, born out of the rediscovery of myself through the shake up that illness is to life. Some seem huge to me now, but I know that if I can keep fighting, I can keep working towards them.

While you work towards these goals, find something that you find rewarding that is within your capabilities. Try so hard to not be the illness. You are you, and there are so many things that make you you, and only you can fight to keep them within. Every little step in the right direction, as small as it is, takes you a step closer to good health, and a step closer to getting back the life you want and deserve.

 

I am thankful for what my body still allows me to do, but there is so much that I miss out on and I want to do everything in my power to do all that I want to do with my life. Look deep into yourself and find what it is you want to fight for, and claw back to that point with every fibre of your being. We can do it.

 

 *In trying to find tight rope walking photos, I stumbled across this photo of Chinese acrobat, Aisikaier, who tight rope walked 656 feet over a ravine, blind folded. Moments before the reaching the end, he felt dizzy and fell. Amazingly, he walked away from it with barely a scratch! Everyone has to give what they are passionate about a go, no matter how crazy it may seem! 

http://www.dailymail.co.uk/news/article-2170881/Chinese-tightrope-walker-plummets-ground-trying-high-wire-stunt-backwards-AND-blindfolded.html

Glimpse into learning to live with chronic fatigue/ PosturalOrthostatic Tachycardia Syndrome/ Hashimoto's Thyroiditis

Now and again, someone stumbles across my blog who is new to dealing with chronic fatigue, or a friend of a friend points them in my direction for advice. This has made me think that it is time to do a summary post about some of what I have learned about dealing with certain issues so far on my journey.

Glimpse into week seven of the Autoimmune Protocol

I feel quite happy with my progress on the Autoimmune Protocol. If nothing else, I have decided that I am much better off not sneaking in the foods I know that am intolerant to (who knew?!). I have decided that I am going to continue to avoid grains, gluten, nightshades, sugar, and the foods I am intolerant to (dairy, wheat, peanuts, eggs and FODMAPs) indefinitely.

Glimpse into week six of the Autoimmune Protocol

Week six! This is flying by. I would say my progress this week is similar to last week's. I have had the added nuisance of regular nausea though, which I am frustrated and confused by!

Does anyone else have issues with meat, and different ways of cooking meat? I have had problems with slowed cooked and stewed meats for some time. Even the smell of them cooking makes me feel unwell. This week, as strange as it sounds, I think meat that has a stringy, fibrous texture is what might be causing the problem. I would love to hear anyone else's ideas about digestive issues with meat, why it occurs, and ways to overcome it.

Glimpse into week five of the Autoimmune Protocol, and starting Midodrine

This week began with a visit to a friend's place which involved food. I cut up a pile of carrots, celery, and cucumber, and created a pesto. It was simple, but I was able to cater for myself as well as bring something that other people would be interested in eating (though, placed on a table which was full of amazing looking (and smelling!) cakes and sausage rolls, I'd have not blamed a soul for not touching the rabbit food!!!)

Glimpse into week four of the Autoimmune Protocol

I can not believe it, but I have now completed one month of the AIP diet! Time flies when you're having (free of everything) fun!!! ;-) 

Glimpse into week three of the Autoimmune Protocol

I have now completed week three of this diet, and boy, has this week been about cravings!

Glimpse into week two of the Autoimmune Protocol

I made it through my second week following the AIP diet! Things went a bit better this week.

Glimpse into week one of the AIP protocol

I have been following the Autoimmune Protocol diet now for a week and a half.

Glimpse into beginning the Autoimmune Protocol

I have learnt so much in the past couple of years, which is an opportunity I would have missed had I not become unwell. Having chronic illnesses which have caused me to stop work, and for my entire social, personal and active life to change to learn these lessons is far from ideal, but I am grateful (otherwise, what is the point of this struggle?!).
I am constantly reading (when the brain fog allows it, that is!) about my conditions and ways to improve my health. My background as a nurse has helped me here, and a passion for nutrition and wellness has been awakened.
Lately, I have been researching the Autoimmune Protocol (or the Paleo Approach). This is a diet which restricts certain foods so as to decrease inflammation in the gut, soothing and healing it, and subsequently, potentially, improving (or preventing) the autoimmune conditions that are often a result of the gut inflammation. When I was first diagnosed with autoimmune disease, I read about foods which were good and bad for thyroid conditions, and basically put it into the too hard basket (aside from avoiding gluten). I was already eating a restricted diet due to food intolerances, and I was quite unwell, so the idea of making it more strict seemed ludicrous! However, there appears to have been a lot more written about the diet since then and there are so many resources that demonstrate it is a feasible and beneficial diet (I purchased "The Autoimmune Paleo Cookbook" and "The Paleo Approach; Reverse Autoimmune Disease and Heal Your Body" - both of which have been extremely useful). Also, last month I had my antibody levels tested (these show that I have Hashimoto's Thyroiditis), and they have increased from 2400 last year, to 3800! They are meant to be under 60. This has really motivated me to find something that may improve this, and as my doctors says I do not require thyroid medication, food seems to be a smart place to focus.

Glimpse into part two: things to do when your body doesn't want to play ball -Wellness Wednesday week 16

Last Wellness Wednesday, I blogged 5 ideas for things to do when you are chronically unwell, to keep yourself entertained and happy. You can read them here. This week, I bring you five more ideas!

1. Do a chore. I know, I know, I said that these ideas would entertain you and make you happy! Finding a chore that you can handle without making yourself more unwell however, can be so effective in the healing process. It is physiotherapy, and it helps you feel like you contribute something to the world, no matter how small. It also helps you work towards the elusive and tantalising dream of a Spoonie...that thing they call independence! (Don't know what a Spoonie is? Read the post where I wrote about it here).
Something I enjoy doing when I have some energy is baking, or cooking a simple meal. Hidden in the joy of filling the house with delicious smells, and your belly with healthy treats, are exercises which strengthen your arms, walking and movement as you get the almond meal from the fridge, and squats to empower your legs as you reach for bowls in the cupboards. Find something that you can enjoy which won't set you back for days. Walk with your helper/friend/family member around the shops as they do the groceries. Wipe the kitchen bench. Fold the washing. Load the dishwasher. It might seem like a little thing compared to what you used to do, but from little acorns...

Glimpse into things to do when your body doesn't want to play ball -Wellness Wednesday week 15

A common question I see popping up in forums and groups for people with chronic health issues is "how do I stop myself from going crazy with boredom/frustration/loneliness/anger/sadness?" It can be a problematic issue, and it is a catch 22 situation. You feel so unwell because your body is sick, so you inevitably miss out on more and more in terms of socialisation, work, chores, physical exercise and activities; normal life! So then in resting your body and trying to heal, you find yourself feeling lonely and frustrated, which then makes you feel worse. It is a vicious circle. The best thing for your body while it heals is to find things to do that can keep your soul happy, your mind active and your body moving within its limits. These are some of the things that I have found to be effective. I will post 5 today, and another 5 on another Wellness Wednesday. 

1. Find a hobby: Take this opportunity to turn a bad situation into a good one; do something that you haven't had chance to do before. For me, I have dived into paper craft, scrapbooking, memory keeping and photography in a big way, and I am loving it! Find something that is within your body's current physical capability (for example, scrapbooking is great because you can sit in a comfy chair or even lie down with a tray table across your lap and relax, but still be doing something with your hands and mind). I love to listen to audiobooks because I am an avid reader, but find physically reading too taxing most of the time (Audible is an awesome site for affordable, online audiobooks). Try painting, or decorate a mug or a pillow, do some cross stitch, play chess with a friend, play a gentle instrument, learn the rules and strategies of a sport on tv such as cricket or the formula 1, try your hand at writing, sewing, or gentle gardening. 

Creating a crafty mess while scrapbooking....

Glimpse into body image with chronic conditions (i.e. wanting to look and feel great!) Wellness Wednesday week 15

Something that I do not see written about much in relation to Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and other chronic illnesses, is body image and getting fit. Obviously, it is not the highest priority when you are struggling to gain a good quality of life, so it doesn't feature so much in articles or forums. However, I feel that it is an important factor to consider. When you lose control over your body and it is not functioning well, it adds to the frustration and sadness when you realise that you can not even work towards making it do and look like you want.

Glimpse into another diagnosis - POTS & RBBB

My health journey has taken another turn in the past fortnight. Mid February, I visited a cardiologist, after having had a tilt table test performed in December, and discovered that I have Postural Orthostatic Tachycardia Syndrome (POTS). This explains a great deal, such as the light headedness, dizziness, palpitations, low blood pressure, nausea, brain fog and fatigue. It is mind blowing for me that this hasn't been discovered sooner. I have had the symptoms since I was a child, and although I've had other diagnosis made such as Chronic Fatigue Syndrome, and although it is a bit like the chicken or the egg in terms of determining which symptom or condition came first, it is amazing that it has taken til I'm nearly 30 to make the diagnosis. There have been several chances for this diagnosis to be made in the past, and it took me requesting the tilt table test (the diagnostic test used to diagnose issues related to blood pressure and heart rate) to actually get it done. I really can't stress enough how important it is to be your own advocate in the health care setting.