My Relationship With ‘it’
Looking back, way back it has always been there, lurking in the background ready to pounce but the first real memory I have of it really mucking things up for me was when I fainted watching an end of term movie in junior school. I was clean out on the floor. I would have been about 10.
From that point on, particularly once puberty started it really tried to dominate. Migraines, fainting, dizziness, shakiness, brain fog, it made me tired doing the simplest of things, it made me feel ‘off’… a lot.
The doctors spent my teens testing me for all sorts of things, diabetes, glandular fever, anything to explain the weird symptoms that were stopping an otherwise healthy teen get on with her life but in the end there were no answers and that’s what I had to do.Get on with it.I got through uni and landed a job working full time as a teacher, I loved my work but it was always there, stalking me, breathing down my neck and every now and then it would come out of the shadows and really knock me off my feet just to prove who was in charge
Then when the kids came along it really kicked my butt. There were times when I didn’t get out of bed for weeks, where I couldn’t lift a brush to just make my hair look a little neater. If I tried to sit up I would have pains across my chest like a vice. Where walking to the kitchen to make a cup of tea would leave me breathless and shaky. There were times when my husband would find me collapsed on the floor unable to move, or to speak. Where (on the one occasion I actually presented to the doctor) my GP phoned an ambulance immediately because she did not know what was happening with my stats. Where 6 months after this mystery ‘illness’ had hit I was still having to sleep every day just to get through. Then it did it to me again, and again and again. I was drowning.
They told me it was called post viral M.E. but I knew that it was just an alias, I knew it had been in my life a very long time but no one listened. I wish I knew its real name.When my babies grew, they were all bendy, one was super skilful but struggled with stamina and fatigue. It wasn’t going to get them. I started to read, then read some more. Then in my mid 30’s I learnt its name, I learnt the about Ehlers-Danlos syndrome about autonomic neuropathy/ dysautonomia/ autonomic dysfunction, about PoTS, about orthostatic hypotension, about hypermobility and the role of connective tissue.
I had the puzzle pieces. I could learn to play it at its own game.
That’s where the balance of power shifted. The more I learnt about it the more lightbulb moments kept coming until the picture of my life was illuminated. Why my body went into shock after baby two’s quick labour, why I pass out after eating a carb heavy meal, why I can’t stand for any length of time, why I can have goosebumps in 30 degree heat.
I am fortunate to know its name because at last I fully understand fully how to make our relationship work. And for my babies, I know that when something is standing in the light illuminated it’s much less scary and easier face than if it is skulking in the darkness.
Autonomic Neuropathy (autonomic dysfunction/ dysautonomia) is a term for various conditions in which the autonomic nervous system (ANS) does not work correctly. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils and blood vessels, anything that you body does without thinking about it, automatically.
My Top Tips for Living Well With Autonomic Neuropathy
#1 Eat small regular meals
I realised a long time ago (in my teens) that I can’t go too long between meals without feeling shaky. This is due to ‘reactive hyperglycaemia’ and the autonomic process of blood sugar regulation. Small regular meals even out my blood sugar over time.
#2 Eat low carbs, high protein
Too much carbohydrate plays havoc with my blood sugar regulation, particularly high gi carbs. If I need a snack to get me through to my next meal time then something high in protien is a much better option for me (like a handful of nuts or a slice of lean meat)
#3 Stay hydrated
I have learnt to stay hydrated (and increase my salt intake) to increase by blood volume and blood pressure which can be very low. This doesn’t come easy to me, at all, I have to force myself to drink my water each day.
#4 Increase your salt content
This was alien to me, since having children I even stopped cooking with salt. Now I add it to everything. Salty snacks are good (although I try not to eat crisps too much) I actually can just eat a spoonful of salt washed down with water when I need to. Salt in conjunction with water increases the volume of the blood, which has an influence on blood pressure.
#5 Stay strong
Ten years ago I began to practice Pilates, my overall strength has greatly improved. This helps to pump the blood back up the body and prevent pooling. I also have Charcot Marie Tooth disease which causes weakness in my arms and legs so getting the blood pumping back around the body and staying as strong as possible is even more important in my case.
This is hard for me. Doing any exercise to a level that gets my heart rate elevated is tricky for many reasons. 1) my right knee is worn out from recurrent dislocations and the realignment surgery, although successful for dislocations, can not replace cartilage that isn’t there. I can’t step down a kerb without severe pain. 2) both of my feet are in a similar state due to the CMT. 3) When I swim I have to sit on the edge of the pool for 10 minutes for my HR to drop. If I stood straight up I’d pass out. So my options are a bit limited, aerobics, badminton, running etc are all out but I know how important it is so I walk everyday and we are putting in a pool at home so that I can swim everyday too.
#7 Eat well
Eating a good diet is very important. Small, regular meals of ‘good food’.
#8 Eat gluten free
After my second baby was born and before any type of diagnosis I began eating a gluten free diet. I’ve never looked back, I feel better and you immediately say goodbye to pre packaged rubbish food and have to cook more from scratch which is better for the whole family.
#9 Avoid alcohol
I don’t abstain from alcohol but I am fully aware that it makes my symptoms worse, my bowel, palpitations, temperature control, sometimes for days at a time. I have found that drinking plenty of water if I am having a few glasses of wine on a night out helps as it stops dehydration.
#10 Avoid hot baths
I try to avoid hot baths at all as I always find myself sitting on the loo wondering how I got there while I compose myself. I always stand up slowly.
#11 Fist pumps/ fidgeting
If I start to go dizzy and I’m in a situation where I can’t lean on something/ someone for support or have a seat then my go to mechanism to stop the blood from pooling is pumping my fists, squeezing my calves or generally fidgeting.
I over breathe, but being aware of my breathing when things are bad helps to get it under control a little. It can affecting my talking because I haven’t got enough breath to speak so I have to slow down. In stressful situations my breathing is also affected.
Pacing my days and my life has been key to managing autonomic dysfunction long term. When I didn’t know what I was dealing with and therefore did not understand how I was feeling I would keep pushing and pushing through my symptoms. I realise now that I was surviving on adrenaline, I would keep getting another surge to get me through, when that adrenaline finally ran out I would crash and it would take such a long time to recover. Looking back they were my worst points.
#14 Listening to your body
I have learnt to listen to my bodies warning signs. My body gives me them and when I don’t ignore them I am more likely to come out of a flare more quickly. As a family we have learnt the hard way many times. Listening to and respecting my bodies limitations has helped me to manage things long term.
#15 Get up slowly
Getting up slowly is really important for me, particularly in high risk environments, for example getting out of a bath, on a warm day, in a swimming pool or after exercise.
#16 Wear a vest
I cant control my body temperature at all. I’m usually cold and I wear a vest all year (even in the summer), the extra layer next to my skin helps me to regulate things. I don’t sweat like most people do but I can be randomly clammy. I also get goosebumps when I stand up, even on a beautiful summers day with my vest on 😉
#17 Wear compression garments
Not only do they prevent blood pooling but they increase proprioception to my joints and can feel like they are holding me together.
#18 LiveWhen my autonomic symptoms flare up significantly life is impossible to lead normally and carrying out all the advice above would not magic the symptoms away. Little by little I step in the right direction. Back to my ‘normal’. Trying my best to stay there. I focus on living my life because I know that in an instant things could change me. I enjoy my children, make time for coffee with friends have date nights with my husband and focus on the wonderful gifts life has given me.
Find out more about Autonomic dysfunction in Ehlers-Danlos Syndrome from Ehlers-Danlos Support UK
If you liked this post you might also like a Dear CMT… – where I write honestly to my neurological disease or How I fake my EDS Symptoms – my 20 top tips for faking ‘normal’
Completely love this article, you are really brave, you lived with this ailment for 30 years, made necessary adjustments in your life to live with it and now sharing it with every body, this is the best education.
Thank you. Not so much brave, I dealt with the symptoms out of necessity when no one could find out what was going on for me. But, 30 years on I now have a lovely cardiologist who is actually treating me!! The moral – never give up 🙂
Sarah can I connect with you via face book
Been diagnosed with autonomic dysfunction
Thanks in advance
Of course – welcome to my stripy life 🙂
I am gluten free for celiac disease and unfortunately I don't think it's helped my dysautonomia. Staying hydrated and eating lots of salt has though!
I'm pleased that the water and salt is helping 😉 I've developed a real taste for salty foods!
Thank you so much for this, Sarah. It is like reading about myself! I haven't been diagnosed with AN formerly, but I do have EDS and have chronic back & leg pain which has necessitated a spinal cord stimulator – my autonomic symptoms (which have always been there thinking back) have increased since having this and regular faints are the bane of my life during this warm weather! Really pleased to have found you – I am at http://www.painpalsblog.wordpress.com, Claire x
Hi Claire, I too loved my career (in teaching) – which isn't happening now 🙁 Like you I would have made some slightly diferent choices if I could have had a glimpse into the future but I wouldnt want to have changed what I've had and achieved. It's a catch 22. I'm lucky that my skills can be of use now as one of my children only attend school part time because of pain and fatigue.
Hot weather – urrggghhh! it really doesnt agree with me. Chronic pain – double urrggghhh! sending you gentle hugs. Love your blog xxx