Wednesday, 31 August 2016

Falls 8 - Cocks 10

So I've been out of hospital over a week now and on new medication for ten days. My count for the past week is....drum roll please.......

Falls - 8
Cocks - 10 ish

That's not too bad for me. Plus I had three days of absolutely nothing. Most of these were in clusters so overall I'm pretty pleased with how things are going. I've reduced the new medication to one a day to get rid of the side effects and so far so good.

I've been trying to recover at home since I came out of hospital but yesterday afternoon we went to the Scout Camp. It was great fun and I didn't move. I just sat there and shouted "cock" while people brought me food and looked after my kids. Win! We sat round the fire and watched the stars. It really was the perfect evening with great company.

My new (school) years resolution is to try and be more sociable. If anyone is up for taking a slightly sweary, part crazy lady out for a coffee please get in touch. My only requirements are a lift because nobody in their right mind would let me drive. I guarantee you will be entertained!

Friday, 26 August 2016

Guest Blogger

Waiting for a diagnosis of any condition can be frustrating, especially when you are experiencing symptoms and you are unable to treat them…
Katy tells her story of how she waited 12 years before she was diagnosed with epilepsy.

I was finally diagnosed with epilepsy in April, after 12 long years of not knowing what was wrong with me…
My falls, twitches, jerks and tics were later diagnosed as atonic and myoclonic seizures.
In February, my health took a severe turn for the worse and I spent weeks having test after test. I think I’ve been to pretty much every department in the hospital now!
Eventually, I saw a neurologist who arranged for me to have an EEG. Thankfully, they managed to provoke a seizure – by having me breathe in and out very deeply – during the EEG and they could immediately see it was epilepsy.
Finally, I had the answer I had been waiting for.
Of course, I expected a miraculous recovery and by the weekend I would be back to my old self. Sadly, it doesn’t work like that and epilepsy medication is a tricky thing…

Finding the right medication

It takes months to get to the right dose and be fully effective. Sometimes you may need more than one type of medication or to gradually increase the dose until the seizures are under control.
Nobody told me how exhausted I would be, how I wouldn’t be able to get out of bed some days. The levels of medication were so high that I felt like a zombie and was still having some seizures.
I’m still very much a work in progress and I speak to my neurologist and epilepsy nurse on a regular basis.

Keeping myself safe

I use an app on my phone to track my seizures, which I find really useful. I can add triggers and side effects to my medication. I can also print it off and take it to my appointments.
I have been referred to a care team to have an alarm to wear around my neck for when I am home alone. It will give me peace of mind that I won’t be stranded on the floor all day while everybody is out.
Nobody wants to be diagnosed with epilepsy but these are the first steps to getting my life back. At the moment I am housebound, in a wheelchair and unable to do even simple things alone.
With the right help and support I will be back to being independent again and living, instead of just surviving.
To anybody looking for a diagnosis…I would say keep pushing, don’t give up and make sure you get heard.
Many professionals will try and dismiss you and I was told many times it was anxiety or stress. Keep going back until somebody listens to you.

Thursday, 25 August 2016

Hospital Laughs

So I met some amazing characters while I was in hospital. I will change their names for privacy.

There was Susan who swore blind she was 182 and sang "Oh dear what can the matter be" on a continual loop.

Margaret who had an exploding bowel and repeated the story several times daily. A fabulous lady who wasn't fazed by continuous shouting of cock!

Linda who had celluitis on her leg which was due to burst at any moment. I was in the bed next to her and was in constant fear of it bursting all over me.

Mike who talked about nothing but pork pies for a whole week (apparently you can sell them for a fortune in Malta)

Karen who wasn't even in my bay but had the burps so loud you could hear her down the other end of the ward.

Sarah and her weird food combinations - cottage pie in bread?? Weirdo! :P She kept me going and we had a great laugh together during our time on the ward. It was a sad day when she escaped.

Lilian's husband (age 93) who wanted to take me home and looked just like the man from Up. Lilian could walk much better than I could and she was 90. Lilian's husband wanted to race me down the corridor, him with his walking stick and me on my wheelchair!

Sharon who wanted to keep me as a pet in her garden. She was a bad influence on me and Sarah and we got told off for being too rowdy! She was encouraging my shouts and trying to get me into trouble! Great fun though.

Emma my sister in law who missed me so much she got pneumonia so she could join me in hospital! Sadly (for me) she was only in for three nights but I appreciate the thought.

Finally a big shout out to the two ladies on my ward whose surnames ended in cock. It was unfortunate all round, what can I say?

Wednesday, 24 August 2016

What did you call me?

I genuinely don't know where to start with this post! Let's go back...way a week last Sunday. I wasn't feeling too good when I woke up but we were due to go to my in-laws for Sunday lunch. I didn't want to miss it so Chris carried me to the car and wheeled me in to their house. When we there I got worse and worse, I couldn't even lift my arms to feed myself so Chris had to help me eat. I just slumped in the chair shouting random things at everyone. Eventually we decided I should i go to A&E so off we went. To cut a very long story short they kept me in, telling me I would see a neurologist the next day. Oh how we laugh about that now!

Monday came and went as did Tuesday. On Wednesday the doctor came to see me and said the neurologist would come and see me sometime after 6pm. As I hadn't seen James and Emily all week we arranged for them to come in at 5.30pm. I told the nurse I was popping to the cafe to see my kids and left my phone number with her in case he arrived early. Of course five minutes later I got a call on my phone to say he was on the ward. We rushed back and less than a minute later I was back but it was too late. He wouldn't wait for me. Not only that but he told the nurse he would come back later but had actually written in the book he wasn't coming back. We waited another two hours for him to come back that evening.

Thursday came and still no neurologist. On Friday I was told he was in the hospital and would call in when he could. My Dad came to be with me and Chris finished work early so I could have someone with me when he came. By 9pm we gave up hope. Yet again he wasn't coming. On Saturday we started complaining to everyone we could, it made no difference and there wasn't anything anyone would do. Chris managed to find his email address and by some miracle around an hour later he turned up! Yet again I was told he hadn't seen anyone like me (I feel so special!) but he was willing to try me on a new medication as a trial.

Four days later and I'm now home but sadly it doesn't look like this new medication is working either. I'm still twitching and falling and it's given me awful side effects. I'm going back to the doctors tomorrow and I've stopped taking it today. I can walk around a little so hopefully enough to keep me out of hospital for now.

So now the bit you've really been waiting for....did i shout at hospital? Of course I did! The highlight of my stay was when the lady in the next bed was complaining that the doctor had gone home without telling her as he was supposed to be checking on her blood work. The conversation went like this...

Sharon: Has the doctor gone home?
Nurse: Yes he has
Sharon: He was supposed to be doing my blood work so I can go home
Nurse: Well he's entitled to go home you know
Me; COCK!!!
Nurse: what did you call me?
Sharon: She called you a cock

I couldn't have timed it better if I'd tried! We all cracked up laughing while the Nurse looked very unimpressed. I promise i have no control over them but I'm not sure she believed me!

Friday, 12 August 2016

A Wonderful Holiday

I've just spent a lovely couple of weeks in France with friends. Thankfully friends who understand that I shout at them and their children. My current shout-ism is "cock" which we've managed to pretend is "cake", "cot" and "cod" amongst many others. I was also rated out of ten for clarity, volume, projection and pronunciation. I scored a few nines but missed out on a ten sadly. It was bit like the Tourettes Olympics!

I also had many falls on holiday so a few more scrapes to add to my collection. Charlie was very disappointed not to see me "turn to jelly" as he was really looking forward to it all holiday. I told him I would try and film it when we got home and send it to him. Most of the other kids saw them I think but didn't seem too bothered. As Gill put it I look like "a washing line folding down like a concertina"

I slept a lot so that meant missing out on a few trips out. I had a couple of days at friends houses which was really nice and I didn't have to worry what I was shouting. The kids did plenty of fun activities while I rested and we had nice days round the pool when I was up to it. I was able to have a glass of wine some evenings so that was all good! I've missed having a drink.

One of the perks to being a wheelchair (I haven't found many) is that you get to skip queues in airports. They literally whizz you right through. I was just worried I was going to swear at them or shout "bomb" so the quicker the better! It takes me days to recover from travelling so lots more sleeping today.

It was all worth it because we had a brilliant holiday. Lots of laughs and I think I provided much entertainment for everyone! I'll leave you with this highlight for me...

At the table in the restaurant. Waiter comes over to take our order. Me with a weird look on my face.
Gill: Are you ok?
Me: Yeah just trying not to let a cock out
*We all crack up laughing*

Monday, 1 August 2016

A Complicated Case

When a neurologist describes you as a "complicated case" that is never good news! Today I saw a different neurologist who was completely useless. He had no idea about me apart from that I was "complicated" and sent me away while he had a think about what to do next. So we wait and see. My referral to the care team has been sent so I should be getting my alarm soon fingers crossed. Other than that it's business as usual with my medication until they come up with a different plan.

At the moment I see the following health professionals on a regular basis...

Epilepsy Nurse
Rheumatology Nurse
Cardiology Clinic
Occupational Therapist

It's a full time job just keeping up with hospital visits. There are probably more I've forgotten about.

The good news is that I had three days seizure free from Friday to Sunday. It must have been the kick to the head Laura gave me! Whatever it was it was just nice to have some respite. Back to some seizures today but can't complain really. I got three gold stars in a row on my app, I felt like I won the lottery!

We've got a busy few days coming up so I just hope I don't get really bad. I have to be really careful not to get giddy when I feel a bit better and do too much. It always comes back to bite me on the bum. I'm looking forward to some time with family and friends and hopefully not scaring small children!