Then the big one…

On September 3rd whilst visiting my partner in London for the day, things decided they would flare.

London of all places to take ill!

What a lovely day it was too a lovely sunny day, but I supposedly started to smell vomit (only I could smell), then became dizzy and disorientated. My partner took me and my little man and brother back to his apartment close by, but I could barely walk. Within minuets I took an unconscious episode.

zoi pipesDue to having these before at the beginning of the year, I was put to bed and watched until I came out of the episode. Which could last anything between 10 minuets to 3 hours… Normally! My partner said it lasted just over four and a half hours. As we where waiting for my body to recover from numbness which was from the neck down (normal when taking the episodes).

Thankfully my partner did the feeding time at the zoo and got tea in. Within short time I went into another episode. These carried on throughtout the night and into the morning. The only difference was that this time I never regained the use of my left leg. Later that day while recovering from another episode my face felt funny, numb and weird. I also had pain at the back of my left eye and blurred vision. Plus a banging headache! After contact with my specialist, he advised my partner I could be taking strokes or convulsions and I needed to be at hospital.

Mark called for an ambulance, as I was still going in and out of the episodes even whilst in the ambulance and in A&E.

I was monitored closely; they ran tests CT scan, ECG and others. They couldn’t find a reason as to why this was happening, so was admitted to St Thomas Hospital in London, miles away from my family and my little boy who had to be collected by my mum.

Unfortunately with being there and not knowing how to treat the Unconscious Episodes continued. I still hadn’t regained the use of my left leg and physiotherapy was started. They weren’t sure as to why I had lost use of my leg either. I then was seen by a Neurology Consultant and had more tests that came back clear.

“Just weakness to my left side and being confused”.

As the days went on, I was still taking episodes and becoming more confused. I couldn’t even remember my partner being at my side or events that had happened.
My leg still not working and the episodes continuing, my heart to which I have issues with anyway was taking some strain, with a few fast acting ways my breathing was sustained and watched closely due to how fast my sats dropped while in an episode and me not taking enough oxygen in.

My specialist came to see what was happening and to make sure my treatment plan was to accommodate my illness. He had also spoken with his colleague who also deals with rare illnesses and worked out it could be my medication again causing the Unconscious episodes. Medication then stopped and within 24 hours the episodes had stopped. What a huge relief!!

My only issue was I still couldn’t use my left leg. I was discharged with intense physiotherapy on my leg and to be followed up with Neurology, GP and Specialists at the hospital.

I wasn’t right but Wahooooo HOME!!

Within 24 hours I was back in A&E on the advice of 111 as my left leg from the knee down was blue, ice cold and swollen.
“I was seen quickly”

Prepared for the fact that it could end up that the issue with my collapsed foot and leg may have left me with no flow of blood to my foot, and that it would mean being taken down for emergency surgery. Heart pounding and worried like mad however thankfully due to not giving up, the surgeon managed to find a very faint pulse and was happy for me to go home. Just to be monitored and was given Aspirin to help keep my blood thin and flowing.

Again HOME… Bed and try and stay out of the places!

zoi feetSo with bed rest ordered and to check in with GP in the week. Due to my foot becoming more blue and cold frequently, very distended stomach with sickness and no motion through my stoma even with Picolax (strong laxative)… I called my specialist who was concerned that the circulation issues could be affecting the bowel and asked to see me the following morning.

He did a few tests and there was flow. Due to symptoms and things getting worse he admitted me there and then to his palliative care centre.

I spent the next two and a half weeks having more tests being prodded and poked, MRI (head and spine), Ct scan for stomach… there was no reason as to why my left leg was acting how it was he couldn’t explain the failure of motion through the stoma either.

The center staff of all grades where amazing and couldn’t do enough to help. There where a lot of therapies offered to help people and I admit the two that I had of a massage type on my body was better than any pain killer until it wore off, They also helped people’s mood as they allowed two lovely huskies and their owners in to cheer people up. They were gorgeous and it again worked! For some reason though the pain got worse and the sickness increased.

This was due to abdominal pressure I suffered three prolapses with my stoma. On the first one due to how big and it wasn’t prepared to go return naturally. The doctor managed to push some back in but couldn’t get it fully back.

“The pain was unreal!”

With medication and a plan in place as things were more settled I was allowed home with frequent checks with GP and DR Noble.

Dr Noble a week after my discharge had an idea to inject local anaesthetic into the main trigger points of my pain as a trial while he worked on getting hold of new medication. Within a minute of having the injections, the pains I had suffered for years had turned to discomfort.

I cant express how weird but good it felt not to be in the pain I was and how fast it worked. With this being a positive and big success to all the medications previously and the Ondansatron Sub- Cut injections I do at home controlling the sickness and nausea. I had hope again of managing my Illnesses. “Fireworks going off felt like the right emotions of joy!”

zoi dog(The picture is with a 12 year old female Husky who was so soft and adorable! She curled up on the bed and took a rest. I was so happy to share and the male was having a good old set of cuddles from my partner)

We agreed that in two weeks he would redo the Trigger point injections to keep up with pain management and then monitor how long they last before needing them again. The two weeks later and again they worked like magic and he gave me consent to go on the family holiday that was planned since the previous year. He assured me that I needed the time away to relax and come back fresh and that he had colleagues out there if I needed medical help.

So Costa Del Sol here we come!