I have worked since leaving college and throughout many illnesses only taking time off but still employed when needed, on the run up to operations, appointments and after gaining new illnesses, so it was a shock but understandable to learn I had been let go from my job.

I worked for the place while having seizures, weakness, fatigue, pain, becoming wheelchair bound and more but the thing to actual stop me from doing my job was memory loss, it was just not possible to be in employment when one day you could think you were a 4 year old next a 16 year old and then up to date in age.

For years people where surprised I worked and I liked to explain how just because my body let me down I was still good at my job and would therefore continue. We had adjusted to work at home and used tools to help with cognitive side, I had a carer and family for practical things so with the right support I would say to anyone don't give up if you feel you can do it. At the same time if you feel you can't don't make yourself worse, try adaptations see how it goes but maybe reducing hours may help prevent having to stop working all together.

Until my memory's are back under control I can't work but I will strive to in some form again one one day.

After 2 years with the NG feeding tube and problems starting to flare in my nostrils I agreed to changing to a PEG feeding tube. This is where the tube goes straight into your stomach and the longer outsider side is under your clothes.

There are a few different kinds, mine has a bumper inside rather than a balloon and it is a dangling tube rather than a button.

The procedure to have it inserted was very quick with a 1 night stay in hospital as we already had all the equipment at home, was settled on the feed and knew how to use it.

The consultant did it in the endoscopy department with 3 other team members. I opted to have no sedation but believe you would usually have this. They then gave me the numbing mouth spray that tastes like bananas before putting in a mouth guard to open it up and begin.

Here is where it went quickly and I may not get the full details even though they kept me informed. They passed the camera down into my stomach, used a light to show where to cut on the outside on my stomach. Passed a clamp down to get a thread and pull this back up through the hole out my month and attach it to the tube and then pull and feed it back down into place before fixing it in with the external fitting, attaching the clamp and y-adaptor on the end where the feed and things go in.

That was me done, off to the ward for a very windy night that did cause stomach pains but I was allowed home the following evening to recuperate.

I have to care for it my keeping it clean, turning it like an earring, but it has been very good to me and allows me to have hydration, nutrition and medication when I can not swallow. 

NG Placement

Having an NG tube placed by the nutrition nurse has always been fine for me, she explains as she is doing it you look straight forwards as she pops the tube up your nostril it easily goes over the bend at the back and she pushes it gently until it goes down into your throat and enters your stomach.

Unfortunately this is not the practice that happens in hospital in my experience, as of course staff in various departments don't have the experience the nutrition nurse does and any many don't even like to do it as they know it can be traumatic when they do it.

I have seen medics asking others to do as they didn't want do, some refusing to completely, some saying they haven't done it in over 10 years so having to get familiar with the procedure and others who simply give it a try and keep trying until it is in.

All this can lead to various methods of tilting the head, meaning the passage is not inline, being asked to swallow water then you can't swallow, the tube coiling in your mouth but they are not use to the feeling and continue pushing, and the worst one for me is the hammering of the tube at the back of the nostril trying to bend the tube over, this is so painful, it causes the eyes to water and can lead to a nerve pain for days once the tube is in.

Placing the tube looks easy but has to be skill and I don't envy the medics doing this job, especially when it's not something you do all the time to perfect.

Some staff members will have experienced this in training so my tip if you ever need this done apart from asking for an experienced member of staff, relax as much as possible to help the tube go down, if you need them to stop tell them before hand you will raise your hand to show them this. If it is sore after any initial discomfort, sometimes moving the tube to a more comfortable place on your check and behind your ear can easy it.

My lovely wheelchair "Hetty just isn't quite right for me anymore.

When I have the big seizures my back arches and I shake so I would slip forward in my seat slightly until my body goes totally limp afterwards. This meant people needed to lift me back into my seat and hold my head until they can get me into bed as I can stay like this for hours.

What I was looking for was a headrest for Hetty, as this would help after the seizures and my heavy head feeling and neck pain.

Here is where wheelchair services stepped in and said they would provide a chair but it would need to be manual due to my seizures. We put our case forward for an electric chair but it was a firm no. What they did provide was manual tilt and recline with headrest which I named "Hannah"

This wheelchair was large and comfortable, only just fitted though the doors if you were straight on. Someone else had to take the arms and legs off it for me to transfer, It screamed disabled, look at me and I was back to relying on someone pushing me but I loved it and still do. Where Hetty had started to hold me back this was going to get me out again, I just had to adjust and I was getting good at that.

The one thing we are going to add to the chair is a power pack which is an assisted motor so whoever is pushing has help, it just does not control the turns but goes back and forwards.

With FND you can often be surprised by a new symptom as it can be an issue with any function caused by the brain so when my swallow stopped working I was not shocked and we carried on for a day or two as things can come back as quickly as they start. Not recommended for new symptoms, best to mention to a medical professional.

On the 3rd day I contacted the GP as I had had no medication, fluids or food. We was asked to go to A&E where I failed a swallow test of course was found to be dehydrated then like FND does after a day my swallow came back.

I was only home 2 days before it went again so off to hospital same routine and this time I was fitted with a NG tube which goes from your nose in to your stomach to put liquid food, medication and water down.

This was only in a few days before my swallow returned and out it came and home I went.

This was repeated a few times until I was kept in hospital for weeks upon end with the NG tube in place and eventually after several meetings and tests I was allowed home with it in, but it was not an easy ride as 1 doctor did not understand the condition and therefore didn't believe I could not swallow, I had to have a psychological assessment before he would agree to treatment and in my area they did not know the process for adults in the community with NG tubes.

Guilt
One of the worst things I have found with having a chronic conditions is the impact it has on those around me. My family have become my carers and I can not give the same support back to them which kills me.

I never imagined I would be letting my parents push me in a wheelchair after retirement age when they have bad legs or relying on them to take me to lots of appointments or just be with me for safety when they should be off enjoying life. They never show that it is a burden and they offer to do more so I know the guilt is my own but I want to care for them as they care for me, we love each other.

As friends started to have children who I should have been there for I wasn't, they had to come to me and I know they are worried about things like the children's volume level for my sake. It should be a relaxing carefree time going to close friends where they can play and muck up without having to apologises, not getting little one to be quite and worry how I am going to be on the day.

Then not being able to help look after Nanna as she was ill was one of the biggest feelings of guilt I have had.

Many a tear has been shed on this topic but I then move on as always with a smile on my face.

I started to get a pain in my right chest and side which became server although I never know with my body if pains will subside quickly or not I felt this was bad so went to the doctor in the morning as my breathing was also effected and was sent to the hospital for a blood test and chest x-ray.

From these test they confirmed I had Pulmonary Embolism which is a blocked blood vessel in your lungs. I had a few in the right lung and a small amount of fluid at the bottom of my lungs. They think they will have started as a DVTs (deep vain thrombosis) and travelled to my lung as my calf was tender but we did not investigate this as treatment would be the same anyway.

The treatment was a course of anticoagulant via injection then 6 months in tablet form. Due to being in a wheelchair and limited movements it is likely I may need to then go on a lower does for life.

The ironic part of this is I later found out it happened on World Thrombosis Day.

The NHS say to reduce your risk of pulmonary embolism
Do
-sit comfortably in your seat and lie back as much as possible
-wear loose-fitting clothing
-make sure you have plenty of leg room
-drink water regularly
-take regular breaks from sitting
-bend and straighten your legs, feet and toes every 30 minutes while seated
-press the balls of your feet down hard against the floor every so often
-wear flight socks
Don’t
-do not sit for long periods without moving
-do not drink alcohol
-do not drink too much coffee and other caffeine-based drinks
-do not take sleeping pills

Today I was told because I have disabilities (meaning my fits) I should feel lucky to be in a job!

Excuse me

With so many people out of work who are actively trying to seek employment I am grateful that I have a job, but my conditions have nothing to do with it.

I fully understand a lot of people can not work with disabilities and maybe someday I will find myself in that position but for now with work place adjustments I can and have a right to. I am capable of doing the job I was employed to do even if I do fit.

Working if you have a disability is not luck it is a right just like everyone else.

Rant over.

My neurologist has diagnosed me with FND after years of symptoms. He has scanned every part of my back and head, run other test to rule out different conditions which was good but then once he explained it just gave me a website www.neurosymptoms.org and has sent me on my way.

This leaves me unable to walk, sometimes mute, forgetful of easy things like the order of the months, a film we have just watch or food we have just eaten, having NEAD seizures related to FND, passing out and all I have is a website, which is good but not treatment.