How it feels to be me!

A day in the life of Chantal

I’m sure most of you who have found your way to this page can relate in some way, or understand more about someone you love who has some of these symptoms either way… here’s a little about what I live with on a daily basis, how I feel and the achievements I make by just completing the day in full!

Each morning I wake up feeling more tired then I did the night before I slept, the bones all creak and squeak as I roll out slowly to ensure I don’t get up to fast so I don’t fall straight back down again from the head spins and racing heart of 120bpm upon standing. I do my normal routine of toilet, brushing (gently because of the constant bleeding gums) I wash my face and take a seat again before getting dressed as by this time my heart rate has already shot up to 130bpm-140bpm. I hope its going to be a good day and focus on the idea it will be repeating my mantra in my head that “Today is going to be a good day” I choose my comfy clothes and get dressed sitting down as I am so dizzy and unbalanced that standing up getting dressed is a disaster waiting to happen. Im glad I can even stand and walk as thats been taken away from these illnesses before…. TWICE!!

I plan out my day, am I going to bake or clean today? Am i going to be able to exercise on the floor or am I not strong enough today? Is it a rest day with netflix whilst my body recovers or can I take my cats out for a play or do puzzles? I set up my day to what I feel is achievable because if I fail at my goals I’m not going to feel any better of it! So each day I set myself challenging but achievable goals. Today my goal was starting a blog site and creating 4 blogs! This is my 4th so can shortly tick that one off!

I have to spend my day mostly seated so my heart rate isn’t high all day as the longer I stand the higher it rises. 3 times a day I check my blood pressure and heart rate 3-4 times each round from lying down to sitting to standing and standing after 2/3 minutes. I document these in order to become medicated for my POTS (postural orthostatic tachycardia syndrome) previously my blood pressure was either high or low so medication wasn’t foreseeable in my future but now its only ever really low so hopefully after this homework from my new neurologist I can get a handle on it with medication.

I cant look up for longer than a second or two as it seems to also bring on my silent seizures along with standing too long, getting up too quick or experiencing strong emotions or stresses. These sometimes give me no warning and I can collapse anywhere but mostly I get pressure through my head, ears like on a plane and through my throat and jaw… then my head feels heavy like a bowling ball and wobbles like a bobble head toy and I cant control it which isn’t great for my neck to say the least. I either feel calm and emotionless during the silent seizure or the worst i’m alert and trapped inside my body. I collapse for 1-3 minutes with no control over my body but yet can hear everything. Its hard not being able to squeeze someones hand, respond, wipe the drool from my mouth, open my eyes or get off the floor! I wake with such strong emotion when I snap out of an episode hyperventilating, crying, disorientated and confused although I was alert during or even calm during!This can happen daily, every other day or once a week, Still awaiting diagnosis and treatment on this. It means I cant drive, so independence is gone as I cant walk to a bus stop or catch a train in case it happens and I fall and hurt myself or collapse on the side of the road.

I spend most of my days struggling with brain fog, the whole walking into a room and not knowing why… or putting clothes in the kitchen bin instead of the laundry basket etc I get lightheaded and sit as much as I need to and stand as much as I can so I dont lose the muscles I still have. I battle the chest pains that mimis a heart attack questioning if I should call an ambulance but don’t and hope that its “just” my costochondritis!

Its all a challenge every last bit from the daily headaches, joint aches and pains, regular strains, sprains, dislocations (I can relocate my jaw and knees without medical assistance now), dizzy spells and chest pains and all the above.

Each time I repeat to myself that I can cope, I am strong, one pain down is one less to go! I remember the great parts of my life.. my husband, family and friends and fur babies. I remember my happiest moments, I remember my future goals to keep me going… the baby I want to have, the children I wish to foster, the courage and hope I want to share to help others and the career I aim to achieve. All of this helps me get through, along with my best friend my HEAT PACK and PAIN RELIEF (if needed as I try not to take it unless needed) I thank the universe and any gods for getting me through the day and love the daily conversations with my friends far and wide that help get me through each day. Texts from my husband checking in always make my day better!

I end the day with no energy, having my husband shower with me as I tend to collapse more so in the shower and with the struggle of having to make all meals Gluten free, I feel bloated and nauseated after eating but do my best to eat. I then am so tired but suffer from insomnia so don’t sleep till 2am after tossing and turning in bed after doing my daily stretches and exercises so I’m not in too much pain to sleep.

And that’s the life I live, I aim higher each day and feel better some days and worse on others but taking each day as it comes is sooo important. Be kind to yourself and listen to what your body needs!

Please comment below if you can relate or share to someone you know that will feel less alone knowing that someone out there feels similar.

Until next time, look after yourself xoxo

TOP 5 THINGS I’VE LEARNT LIVING WITH AN INVISIBLE ILLNESS

There are many things I didn’t know until being faced with living life the way I do now so I would like to share my top 5, otherwise I could be here all night!!! Now I believe everything happens for a reason and these lessons are apart of my reasons!!!

  1. Don’t ever take your issues out on someone as you have no idea what they are dealing with behind the scenes. I don’t think I ever really have but thinking back to each time someone has even been a slight bit snappy if I’m having a hard day now the slightest comment can make me snowball downhill and I would hate to of ever made anyone feel that way. I still hide it on the inside like so many of us do, but words are so important because just a sentence can make or break someones day.
  2. I am stronger than I think! I’ve gone through so much and each time something bad happens I used to think I couldn’t handle it but now I know I’m tough. Anyone dealing with chronic illnesses are far more tougher than they give themselves credit for because each day we are fighting a war inside our bodies and each day we live through is a day we have not only achieved but we have WON that BATTLE!
  3. I am my best advocate! You are too! When I was first diagnosed I was so furious with so many doctors and the medical world as you put your faith in them and sometimes it’s for nothing. They don’t have your best interests at heart… only you do! So standing up for your self is the only way you will get the best treatment. Do your research, ask about certain medications you believe might help, if you think your diagnosis is wrong then question it, suggest what you believe because no one knows you better then you!!!! I got my POTS diagnosis within 3 days of symptoms after being sent from the doctors to hospital to home. I did my research and found POTS matched everything I was experiencing. So I went back to the doctor and suggested it and he did some tests (after he was googling it!!) and agreed! He then sent me to a specialist who then also confirmed it and told me it generally takes most patients 3-5yrs to be diagnosed!!! So speak up, don’t be afraid!
  4. Your work doesn’t define you! Not being able to work doesn’t make you less of a person, I used to answer the who are you question with my job title….A director, A real estate sales agent etc but NOW when asked I am a strong, passionate and caring women is my answer.
  5. It’s OKAY to not be OKAY!!! Gone of days now when I thought that if I was sad or tired and too exhausted that it was the end of the world and something to be ashamed of. I managed to deal with violent past traumas okay but when it came to my health because the world doesn’t share it I didn’t think I could so I suffered within myself… NOW i know its OKAY and I openly speak about it, I post awareness stories to help change the stigma when possible and it’s half the reason I’ve created this post so others know its okay and to as for help and advice! As long as you can pick yourself up when needed and keep up the good fight because you will WIN! You will win no matter how long you live if you keep fighting every day so you have no regrets!

These are my top 5 lessons, the top 5 things that have made me be the best me! Leave your comments on the lessons your illness has taught you to make you the strong man/woman you are today!

Tips & Tricks

Getting a handle on life with an invisible illness can be tricky at first, and well every day after that to be honest… So I thought to make it easier for those of you recently diagnosed, wanting to learn new tips or remember some basics I thought I would share my tips & tricks on daily living! So here goes and please feel free to comment any of your tips, tricks and hacks below so we can build each other up together!

  1. Set your daily plan, each morning!!! Weekly simply won’t work as each day is different, plan half a day at a time. How many spoons are you planning to use today and what on?
  2. Meal prep on your good days, baking and slow cookers are best 3-4 meals are best so you don’t get bored of each meal.
  3. Buy and take a collapsible walking stick with you on outings! Great on public transport if there’s no seats, makes our invisible illness, less invisible!
  4. Water!! water is your friend, if you don’t like water, add sports drink powders or lemon/lime/oranges/strawberries/watermelon etc as being hydrated will be a huge symptom relief. TYPO has really adorable 2ltr drink bottle with a pop top (pop tops for some reason make me feel less bloated when I drink water, no idea why?)
  5. Sleep… your body needs it, although we feel like we have not done much to be tired… A war is going on inside our bodies, causing it to be exhausted quite often, so if you can nap when possible
  6. HELP! Get help when you need it, do not put your pride first. It took me a while to be able to ask for help, help getting to appointments, help cleaning etc you name it if you need help ask a family member or friend or hire someone. Its not worth going down hill to get something done!
  7. Get a doctor on email! One of the many doctors you visit should be easy going enough to allow email contact. Someone who knows your medical history who you’ve seen regularly. I say email because if you have brain fog like me, you forget why you even booked the appointment, when you booked it, forget to talk about specific problems or it doesnt come out the right way when your trying to explain it or something new happens and because you cant see the DR for a few days you GOOGLE your symptoms and stress 10 x more!!! So it’s best to have a DR on email so you can word it the way you need to, email when needed and get answers sooner!
  8. LISTS: Create a list of things you WANT to do with your time, if you were to die tomorrow what would you regret… Seeing friends and family more? enjoying outdoors? you name it! PUT it on your list and do it! Have lists of activities you enjoy that you can do at your best and ones at your worst! Puzzles, crafts, drawing… options are endless. I will have a blog on that soon.

There is my top 8 tips & tricks. comment yours bellow! I hope this helped!

My First Blog Post

INVISIBLE BUT STRONG!

HOW I FIND STRENGTH FROM MY INVISIBLE ILLNESSES

Be yourself; Everyone else is already taken.

ā€” Oscar Wilde.

This is the first post on my new blog. Iā€™m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates. In this Blog, I want to explain why I feel like my illness has made me better in so many ways!

To understand me you need to know my biggest belief “EVERYTHING HAPPENS FOR A REASON!!!!!!!” it is that belief alone that has tought me that for everything I go through, teaches me a lesson I need to know for the next event in my life. I truly believe that if I hadn’t ended up with these illnesses, had the past I’ve had and lived the life I have that I wouldn’t be the same person TODAY as I am. I wouldn’t be in the position to help others, I wouldn’t be strong enough of handle the challenges I’m currently faced with.

I hope through my blogs, emails and support that you too, will be able to face your challenges with strength, courage and knowledge that YOU are NOT ALONE!!!!

MY ILLNESSES & ME

Hi, I’m Tiahana I live with an invisible illness… well quite a fair few! Where to start… I have:

POTS: My heart rate goes through the roof when I stand up, among other fun symptoms

COSTOCHONDRITIS (replicates the feelings of having a heart attack… FUN.. NOT!)

ENDOMETRIOSIS: Infertility We’ve been trying for our first for 4yrs, oh and LOTS of PAIN!

HYPERMOBILITY SYNDROME: Extra flexible = more strains, sprains and dislocations!

MIGRAINES: Pain, pain oh and the vommiting! EXTRA FUN in BRIGHT LIGHTS! (NOT)

ASTHMA: Definitely not fun with the country on fire!

SILENT SEIZURES: Still being diagnosed, slowing in the brain showed on last EEG.

COELIAC DISEASE: No gluten šŸ˜¦ Thankfully I’ve found lots of great GF recipes to share!

NEW DIAGNOSIS’S AS OF JANUARY 2020

ADENOMYOSIS – Abdominal cramping and infertility

POLYCYSTIC OVARIES – More abdominal pain and heavy periods, infertility as I have 22 follicles on the left ovary and 20 on the right

CARPAL TUNNEL – Tingling in the hands and arms with cramping, dead arms if i lift above my head!

STRESS – Apparently its causing my seizures, abdominal pain and infertility even withthe above diagnosis its the stress causing the cramps not the diagnosis’s themselves !!!! Seriously… some doctors!!!!

So Just a few things my body has going on, I’m sure I’ve still missed something due to the life of BRAIN FOG and daily PAIN.. which I’m sure I’m not alone with and that you suffer too, which may be what has led you here… or you know someone else living this crazy life

I’m here to help you understand your not alone and share everything I have learnt.. one blog at a time. If there is anything in particular your curious about send a message and I will respond or post a blog on that topic!

Feel free to check out the page, comment and email your questions and feedback and together we can be strong!

#invisiblebutstrong #Invisibleillness #StayStrong #zerotohero #YouAreNotAlone