About Me

Hello, I’m Zoë, 35 years old from Kent

I have been poorly my whole life but no one could tell me what was wrong until….

In April of 2015, I was diagnosed with hyperadrenergic postural tachycardia syndrome (PoTS), which is a condition that causes dysfunction to my autonomic nervous system. When I stand my heart rate increases and my blood pressure goes very high, I’m at risk of a stroke at any time and I pass out.

I also have Ehlers Danlos Syndrome (EDS). EDS affects all of my joints so I dislocate and sublux (joints partially dislocate) daily, it also causes problems with my internal organs and my collagen. Recently I’ve been rushed to get an appointment with the geneticist as they now suspect I have a rarer and more life threatening type… it’s a waiting game now. I’ve been enrolled onto the 100,000 genome project on the NHS.

As well as EDS and POTs I have a ventricular septal defect (VSD), which is a hole in the heart, and my mitral, tricuspid and aortic valves regurgitate, this means that un-oxygenated blood (the wrong blood) goes around my body. I also suffer with different heart arrhythmias. I had a pacemaker put in on 30th March 2017 as my heart was pausing for too long and also was going far too slow.

I also have Asthma. Fibromyalgia and Mast Cell Activation Syndrome (MCAS) and genetic related high cholesterol .

On Christmas Eve of 2015 I was told that I have bad lung function and bilateral weakness in my diaphragm, especially on my right side in the supine position. This means I cannot lie down: by doing so my oxygen levels drop dangerously low, I turn blue and go into hypoxic seizures. Between Christmas and New Year 2016 I fell into a coma for 7.5 hours and after I woke suffered a number of seizures.

I’m currently under the care of Royal Brompton Hospital in London and on 23rd June 2016 I had a sleep study there alongside other tests. The outcome of the study led them to suspect that I had an extremely rare condition and so they put me on ventilation. On 4th of August I was back to repeat the sleep study and it was confirmed that I have Congenital Central Hypoventilation Syndrome (CCHS): this means every time I go to sleep could be my last. I have to sleep with a ventilator (life support unit) now otherwise I would die. What happens is that when I fall into deep sleep my autonomic nervous system stops working and so my brain doesn’t tell my lungs to breath.

I’m currently under seven consultants, all at different hospitals. My health has got a lot worse over the past year, but you’ve just got to deal with it step by step.

My gastroenterologist consultant has told me I suffer with gastroparesis which means my stomach is partially paralysed. I have lost six stone in eight months and only have liquid food and soft food, I may well need a feeding tube or a central line. I also have a redundant colon. As this is so complex I have now been referred to a specialist in London. I have a continuance nurse and use a iry pump (irrigation pump) I have a mega colon and it’s redundant. I also have to self catheterise as my bladder is failing.

I have been wheelchair bound now for 4 years now and need 24 hour care. My home is finally adapted for the wheelchair and I have a wet-room built to the side of my home, with a dropped kerb and drive with ramp access to the front door built in, and my doors widened to fit my wheelchair through: this has made my life a lot easier and a little more independent.

I am weaker now and I am poorly, all my organs are failing. My whole life has gone upside down. I and the consultants don’t know what lies ahead. All we know is there is no cure of anything I have and with time it will only get worse.

Despite everything I am still the same Zoe: cheeky, stubborn and I like to take the mick out of myself in jest along with others. I’m still positive and every day is both a struggle and a blessing. I have to fight but we all have our fights. I make the most of what I have and try to do things on the days where I feel half human, even though every day I have severe pain which never goes away.

On top of pain medication which I try hard not to take unless I really have to I rely on 30 + different medications a day to keep me alive. I shouldnt still be alive but I am so making the most out of it!

I died on 19th October 2017 but they managed to bring me back so very blessed ❤️ I’ve also died many times now after this date, If it wasn’t for my husband I would be dead by now.

Before I got so bad I used to work in travel as a cruise specialist and then at Manston Airport. I worked in Airfield Operations and Dispatch, this is where I met Carl my husband.

Carl worked for 24 years in the fire service as a watch manager, we didn’t take to one another at first lol however over the 12 years we got a strong friendship and then we started dating, he wanted me to show him the world so that’s what I’m doing, he proposed on 9th Nov 2016 while at sea heading to Aruba and of course I said yes! On the 10th March 2018 we tied the knot on Waimanalo Beach Oahu (Hawaii)! Carl has always been by my side and when I got more poorly I gave the option he could leave as he didn’t sign up for this but there was no chance he was leaving as he said he loves me – so from then he continued to save my life more then I can count and he truly deserves an award for what he does as we don’t get any help from social care!

We lost my dad on 12th August 2018, 5 months after our wedding which is so hard in many ways.

Carl now runs his own business where he trains people in basic life support, fire training and much more, in between looking after me. Www.kentsafetytraining.co.uk

We own our home and got my 3 cats my boys!

Baloo my eldest, A British shorthair Blue self – 6 years old.
Monty my middle, A British shorthair Lilac Self- 6 months.
Ambrose my baby, A British shorthair Cream Self, 5 months.

You will find us in one of three places, Home, Hospital or on a Cruise 🚢😁 that’s what has triggered me into blogging for wheelchair users accessibility on Cruise ships, excursions and so on. I’m going to try my best in giving information and links with pictures to hopefully help other wheelchair users. You only live once after all….

My motto is ‘Everyday may not be good but there is Something good in every day’

8 Comments Add yours

  1. It’s so rough that you have all this to bear. Continue being tough and pushing through!

    Liked by 1 person

    1. Thank you for your kind words 🙂

      Liked by 1 person

  2. Leanne Cronin says:

    Hi my faraway friend…nothing stops you! You are such an inspiration and I hope we get to meet one day…love always xxx. This is a great idea!

    Like

    1. Awww thanks Lea!! I wanted to do this for a while but never got round to it, I haven’t been sleeping great lately so I made a start. I will be doing proper in depth blogs from our next one in August and onwards. I hope people follow and give me ideas of what they would like me to look out for to help them. So happy I have your support, maybe I’ll be able to in future get merchandise people can buy 😊 lots of love xxxx

      Like

  3. Susie says:

    Zoe thank you for sharing. You both have so much to deal with. My partner and I cruise because he can no longer walk therefore cannot fly. We are restricted to Southampton round trips.

    Can you fly? If so how do you manage? I would love to cruise other parts of the world but long trips aren’t possible for us either.

    Like

    1. Hey Susie! Thanks for your comment. My last flight was February this year to the Barbados for a 2 week Caribbean cruise for hubbys 50th, I have not blogged about this as I will be back on the ship next year and want to do a more in depth blog. We now are also restricted to Dover, Southampton or Tilbury but mainly Southampton. Flying was very hard and stressful but my body is now too weak certainly for long haul flights so that’s a no go now and will need to see specialist for short haul. All our next cruises to 2021 are from Southampton. You can get to further places from Southampton but you need to be able to take that time off from 28 to 35 days. We will certainly be doing this in the future just not yet. Please do ask away on anything you want to know about certain ships, I’m going to post a bullet point of the ships I will be going on up until 2021, the next in August is Celebrity Silhouette. Thank you for taking the time to comment I do hope I can help with information sometime x

      Like

  4. Gene A. Bovee says:

    That looks like an Eagle HD, which I have in silver. Wonderful electric chair! Have you had any issues while traveling with in on planes or ships? I have been on 16 cruises, but not yet with my Eagle in tow. Just thought I would ask if there is anything I should be aware of. Thanks.

    Like

    1. It’s a 10J Folding Electric Wheelchair from Better products for disabled. It came with a bag to go in which I used for flights, I’ve taken it on 3 long haul once it went in the hold in its own cage the other two times came on aircraft with me just had to slide both batteries out and keep them with me. Everything was fine however I can’t fly anymore as too poorly. The airlines will want to know what type of battery it is and the size and weight. Same on ship they want to know size weight but it’s a lot easier. There is no issues with using on cruise ships I don’t know what your Eagle HD is but from what you say seems similar to mine and I have no issues at all, we brought the 10J for cruising as my main chair (Quickie Salsa M2) it’s heavy and big.

      Like

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