Symptoms Diary - Collaboration With Hollie Beca

Hi Everyone!

This is a long post, so you might want to grab yourself a drink & some nibbles!

I’ve been chatting to the very lovely Hollie Beca this week. She’s been so kind in sharing her knowledge & experiences as a POTS sufferer with me. If you’ve seen my recent vlog (linked here), you’ll know that I’ve had some strange symptoms recently & the hospital are running some tests. One of those is a 24hr ECG that will record my heart. I think they’re checking me for POTS, so it’s been really great to have someone to talk to who’s already been through what I am going through & can offer support & advice.

Anyway, I’m babbling…

It can be tough for people who can’t see what’s wrong with you to understand how you can go from being fine one minute to being poorly the next. This month is Dysautonomia Awareness Month. Dysautonomia is an umbrella term for conditions that cause a malfunction of the Autonomic Nervous System, which including POTS.

Hollie & I decided to write a ‘Symptoms Diary’ post to highlight what it’s like living with an chronic invisible illness & share how we cope! I will link Hollie’s post here. She has a lovely blog & great writing style - I definitely recommend checking he out!

For those of you who don’t know, I have Basilar Type Migraine with Aura (I’ve had a continuous migraine since the age of 11), IBS, Asthma, Eczema, Allergies, PMS, TMJD & am being investigated for Hypermobility/Ehlers-Danlos Syndrome & POTS. All these conditions are interrelated & you can read more about some of them on my health blog – Tania Talks Health. 

Sunday 5^th October

Nausea kicked in during a shift at my retail job – luckily it didn’t last long & I didn’t need to take an anti-sickness tablet! I began experiencing a shooting pain from my hip all the way down my leg, still with 1.5hrs of work to have to get through! This is not uncommon for me, especially when I’m at my retail job. My upper back then became painful & that travelled into my neck, which was really uncomfortable!

When I got home I collapsed onto the sofa as I was exhausted! When I came to stand up, my body seized up & couldn’t straighten up or walk properly! Later in the evening I started to experience stomach cramps, with moderately bad IBS symptoms (more frequent trips to the toilet & looser then normal bowel movements). This is most likely caused by stress! I also noticed throughout the day that my jaw joint was painful, this again is most likely due to stress!

After dinner my heart started racing & was pounding so hard I could feel my lips pulsing! I had a similar experience while in bed trying to get to sleep – this seems to be a regular occurrence! My migraine was about a 2 on the pain score, which is good for me & I a level where I don’t really notice it!

Monday 6^th October

I’ve not got a happy tummy! Monday is one of my teaching days, so anything other than scheduled toilet breaks is difficult! Shall we say I had very loose bowel movements & leave the rest to the imagination! Each toilet visit resulted in my heartbeat quickening, which I could feel throughout the whole of my body! What’s more, I passed a couple of students when I was about a meter clear of the loos & one of them exclaimed “eugh, smells of poo!” I’m so glad both male & female toilets, as well as the staff room are all in a ‘staff only’ area! I walked past confidently so they didn’t know why I’d just been in there, but felt so embarrassed!

After another visit to the ladies, I was sat in the sixth form common room writing a blog post (cat’s out of the bag – this is where the majority of my posts are written!) and one of the students said to her friend “I can smell shit!” Now I knew this definitely had nothing to do with me, but as an IBS sufferer, as soon as someone comments on a bad smell I immediately feel embarrassed & am often self-conscious about whether I smell bad, especially during a bad ‘episode’!

Because of my early start (I leave the house at 6am on a Monday) my migraine pain score is often worse, today it reached a 4, which for me is still only a background pain that occasionally becomes a nuisance. It was during one of these nuisance moments that I noticed myself thinking “my head really hurts!” I realised that, prior to starting my course of Botox treatment for my migraines, I was experiencing daily pain of between 7 & 9! This highlighted just how much I was putting up with previously!

I have an amazingly supportive family, which helps so much!

This is a pic c.2000 was taken on a holiday to Cyprus to spend Christmas with my Aunt, Uncle & cousins

Tuesday 7^th October

I was most definitely running low on energy! To the point where I was hyperactive to overcompensate & get through the day! That & the need to consume a large amount of cola! My stomach was a little better, but still required a number of trips to the toilet! My migraine pain score was a 3, which is not surprising with my lack of energy!

Wednesday 8^th October

A day off! YAY!!! Unfortunately not a chance for a lie-in though! I had to set my alarm for 9:30. I know for many people this is more than a lie-in, but after having to leave the house at 6am Monday & 8am Tuesday for teaching, my body needs to wake up of it’s own accord! I had to set my alarm to let our cleaner in as it was due to be her first day with us & she didn’t yet have her own set of keys. We decided to hire a cleaner, as I am unable to do it myself as it exacerbates my joints. My husband was the one who has, until now, done the cleaning but has just started a new job working long hours so it isn’t feasible. The cleaner didn’t turn up!

I spent the majority of the day on the sofa, fatigued. 4 hours of which were purely watching the TV, something I never do as I’ve always something on the go at the same time! Once I’d plied myself with caffeine & sugar for energy (not something I’d suggest to anyone, but until I receive help managing my fatigue, I have no other choice if I want to continue to function!) I made it to my pole dancing class. I was doing well for the first half of the lesson, but then fatigued kicked in once more, in front of everyone! In a way it was lucky that I was too exhausted to care! My whole body was shaking & my heart was pounding. I attempted a couple of moves after taking some time to rest, but had to admit defeat! As we were stretching of at the end of the class, the teacher said to me “you’re flexible!” I explained my difficulties to her at the end of the class & she was extremely understanding & supportive! My migraine has subsided back to it’s usual 2 on the pain score.

My Hen Do - a family picnic & 'sleepover' wore me out! I was asleep before the sleepover even started! It was still great fun!

Thursday 9^th October

I had an appointment with Occupational Health for one of my teaching jobs. This made the day particularly stressful! My IBS behaved itself for the most part, but my heart began to race & I experienced numerous palpitations. Sitting in the waiting room I felt anxious. My mind raced with possible scenarios that might or might not happen. I tried to focus my mind elsewhere by chatting to friends, including Hollie, on Twitter, which definitely took the edge off. As is usual, once I’d got into the appointment I was fine. The man I saw was lovely & when I raised my concerns about an incident that had taken place he was horrified & confirmed what I already knew to be the case – I had been discriminated against. I came out feeling as though a weight had been lifted from my shoulders. Even though I knew what the OH had confirmed, a part of me thought I was exaggerating or getting myself worked up over nothing! My migraine pain score was a 2.

Friday 10^th October

A lie-in! I slept until 11am & finally felt like I resembled a ‘normal’ human being! I even managed an okay retail shift, although I did experience dizziness & the feeling of cold water being poured into the lower part of my legs & my feet every time I stood from crouching (something I have to do a lot!). I was tired once I’d finished & my feet hurt, but I felt better than I usually do! Once I was home I started experiencing some IBS symptoms, namely wind (that smelt REALLY bad) & bloating. No poo all day! L My right cheek went numb in the late evening & into the night. My migraine was a 2 on the pain score.

Saturday 11^th October

I had more IBS related wind (less frequent & less smelly!) today. I sat on my parent’s new sofa in the afternoon but the seat was longer than my legs & the back was too soft for me. Soon after sitting down I experiences neck pain. I began to experience fatigue at this point too. Just before dinner I got a sharp pain above my right eye that went down to the side of my temple. It subsided after a few minutes. I picked up a little with cola & dinner. After dinner I did a poo! This might be a trivial thing to many, but having not done one all yesterday & the majority of today, it’s significant! Once again my heart sped up while I was on the toilet. I spent the evening with a numb right cheek again! My migraine pain score was a 3, having been quite active during the day & not being able to have my usual Saturday lie in so I could help my parents set up their new house.

I struggled with all the standing at our wedding so we sat down & got some great shots!

The pic I'd love to show you is of hubby & I sat on the ground with my siblings. Unfortunately I can't as one of my brothers' jobs prevents him from having any presence on the web, so I thought this would be a good alternative!

Coping Strategies

People who are unwell or have a disability push themselves hard to live as normal a life as possible, putting on front to all but the people they are closest too. In some cases even those closest don’t get to see how much someone is suffering as it may be hidden from loved ones to remove additional worry. There are no hard & fast rules as to how to cope with a chronic illness & it will depend on your condition(s), but here are some of the things I do.

• Makeup – If I’m feeling really rough, I generally look rough too! In order to disguise this (as long as I have the energy) I’ll put on makeup. It doesn’t have to be a lot. A little mascara to open the eyes, some powder & concealer to cover dark circles & lacklustre skin, a little blusher to add a healthy glow to the cheeks & some lip gloss. This can really transform both how you look & how you hold yourself. It’s one of the reasons I love makeup so much!
• Pacing – This is basically planning your life! If you are able to work, it’s about making sure you have a suitable amount of time to regain your energy before your next shift. It can also be about planning your daily activities. For example, if you do some ironing, do it sitting down & either have a rest before your next task or do something that puts the emphasis on a different part of your body. Like walking to the post box to post a letter.
• Smile! This can be a really tough one, but if you can smile through your pain you trick others into believing that you’re okay. Their interactions with you can trick your brain into feeling better than you’re actually do. For me, this helps take my mind off the pain & allows me to enjoy activities more.
• Ask for help when you need it – This is a difficult one to do, but if you ask for help when you need it rather than struggle, you could prevent a flare up of your condition!
• Accept your limitations – This is something that I am only just starting to do myself. Life takes everyone in many different directions & it isn’t realistic not to adapt to your situation. While this may be an extremely difficult thing to do, when you come to the point of being able to accept your situation & ultimately find things that you are able to enjoy within that, you become happier & more content.
• Reach out – There are Facebook groups for those affected by different conditions, as well as people on Twitter, Instagram, Google+ & many other forms of social media! I have made so many friends, including Hollie, this way. The people I’ve connected with have all provided immense support throughout my struggle for a diagnosis & have helped me make sense of the strange things my body has been experiencing.

I've always wanted to be a musician, but because of my joint difficulties this is not to be. I still love playing when I'm able, but have found other thinks I enjoy like blogging & pole dance!

I hope this & Hollie’s post have been useful both to those living with a chronic condition & to those who know some one with one. That little bit of understanding can go a long way in helping someone feel less alone in what can be a very frightening & alienating time.

Thank you to everyone who has made it this far - I really appreciate it! I'd also like to say a very special thank you to Hollie for all her support during what is quite an unsettling time. Please feel free to share your experiences of chronic illness & coping strategies in the comments below, or if you’d rather you can email me at whentaniatalks@gmail.com.

Tania Xx