Parenting Expert

It's been a very exciting week this week. I got my hair did (as my American friends would say) so I look fabulous around the house. Well I did briefly, normal service has now been resumed. I got a new armchair...whoop! All ready for my stream of visitors so they can have a nice comfy seat next to the fire.

Also rather randomly I was contacted by a producer from Key 103 to say she had read my blog and could I contact her. She wanted some comments for a parenting chat they were having on the Late Show. Now obviously my parenting skills are renowned across the North West but even I was a little surprised. Still I am one step closer to getting on Strictly Come Dancing which is the ultimate goal. I'm pretty sure I could get on Celeb Big Brother with these credentials.

I was having a great week until it all went a bit pear shaped last night. I think I've picked up some school germs (thanks kids) and it set my seizures off. Still a bit off today so I've the spent the day horizontally trying not to mess my hair up.

Ooh nearly forgot the most exciting bit...it's new cardigan week! My mum took me shopping on Monday and we got my annual new cardigan. This has been ongoing for many years and I know people start getting excited from August onwards and wonder what I'm going to buy. Last year I went crazy and bought a purple one which looking back was the beginning of the end. I'm not sure I can blame being ill entirely on the cardigan but the signs were definitely there. This year I calmed down a bit and went for grey. Let's try and rein it in and see if it helps. Might have to go back to beige next year if I'm still ill.

Being Profound

I was thinking in bed this afternoon before my nap about how people see people with disabilities. The two types I see are that they are fakers, scrounging off the government or the second that they are some kind of superheroes who can do anything they put their mind to. The reality is I am none of these. I can't just do anything I put my mind to, I wish I could! I don't want to be stuck like this. I couldn't run before I got ill but I did enjoy a good walk and a night out here and there and I'm looking forward to getting back to being that person. I'm not a superhuman, inspirational person. I'm just trying to deal with the crappy hand I've been dealt. I worry that I will die without doing some amazing that I'll be remembered for but that's because i read too many books about incredible people! I love reading about people who have escaped adversity and changed the world. If I don't change the world before I die I'll feel I've failed. We put too much pressure on ourselves to be out of the ordinary when just being ordinary is very underrated.

I just want my children to grow up to be contented and happy with their lives in whatever they chose to do. They don't have to be anything spectacular for me to be proud of them. I know they struggle with me being ill and for their sakes as much as mine I hope I get back to normal quickly. Losing their brother was bad enough and it's hard for them when I can't do things with them.

So I'm not going to be an inspirational, superhuman. I'm just going to focus on being normal. A normal person who just has a bit of bad luck and is damn good at dancing! ;)

Operation Sociable

Operation sociable is going well so far and I had a lovely coffee with Rachel yesterday. It was all going well until she left me stuck in the doorway in the wheelchair and I had to shout for help! Other than that we had a lovely afternoon and good company. I'm getting quite good at manoeuvering in my wheelchair but training for the paralympics is slow. I've got four years so you never know!

I was at hospital today to see the epilepsy nurse. I tried to walk into the hospital but ended up splat on the floor so that was a big fat fail. I like to give it a go though, A lady in the lift told me to keep smiling which I would say I'm pretty good at. The nurse has upped my meds to the maximum dose so I'll be very tired again for the next month. What do you mean there will be no difference?? Life and soul of the party that I am. It was probably all the partying that got me in this mess!

I've managed to get to school twice this week (with the help of friends) so I can be there when Emily gets out of school. I'm very grateful to everyone who has helped me in the past few months. I couldn't do it without you so a big thank you.

Alarmed and Dangerous

I've been slacking on this blogging business this week. I had social services round on Wednesday to talk about alarms and on Friday they came to fit them. I have one round my wrist which connects to a central system so if I have a fall I can press it and somebody will come to help or send an ambulance. They also fitted smoke alarms which connect to the same system. I did point out that my method of cooking usually involves the smoke alarm going off but apparently this isn't a problem! Also slightly concerning is the big red button now attached to my wrist. I have a nine year old, a four year old and a husband obsessed with pressing buttons so I can see this being a problem! The kids have had a practise so they know what to do in an emergency.

I've managed to go out for a coffee and have lunch out this week. I had six falls on Friday morning so gave up for the day and went back to bed. Emily has absolutely loved school and is desperate to go back next week. One more week of half days and then she can go full days which will make things easier.

I reached 5,000 hits to this blog this week so i'm really happy with that! With Charlie's blog I spend a lot of time promoting it so it gets lots of hits. I'm really pleased my new little blog is getting lots of visitors too so thank you for reading!

Where's the Washing Machine?

Have you ever walked into a room and forgotten what you came in for? That's what happens to normal people. Have you ever forgotten where you keep the washing machine? That's what happens to me! I get lost in my own house and forget where I am. Chris is quite used to me shouting him and asking where I am and where I should be going. We don't know if it's the epilepsy or side effects of the medication. Either way hopefully it is temporary. My Granny suffered with dementia in her later life so we call it my Granny moments. It's a temporary loss of memory and then a bit later i'll be fine. I find it difficult to type at times too and quite often miss words out or put the wrong word in. My brain gets very confused at the moment so if i don't make sense you know why. That's my excuse anyway!

Lots going on this week with people coming to assess my house for alarms etc. Plus my baby started school today. I'm sure she's had a wonderful time but I can't believe she's old enough for school. She fell asleep on my chest last nightt like the baby she still is. I may have had a few tears dropping her off. I'm just glad I got out of hospital in time to be there for her first day. Can't wait to go and pick her up!

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.

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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.

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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...

Neurologist
Epilepsy Nurse
Rheumatologist
Rheumatology Nurse
Cardiology Clinic
GP
Occupational Therapist
Physio

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!