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

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