I asked my mum to tell me a bit about her point of view: this is what she told me…
Having a daughter with severe epilepsy has its challenges. Im a carer and a mum but a mum is a career anyway isn’t she? There are so many things that impact upon our daily life that no-one else realises unless they too are in the same situation. These are things which we have been advised by Dr’s, Nurses, Care givers, these are not because i’m an over protective mother. These have to be done as Jo’s risk of injury is so high. Things she can’t do unless I’m there watching. Not using sharp objets, cooking with hot food or even making her soaps unless I’m watching. Carrying hot drinks, having to have her hot drinks in a sealed cup with a straw! no locked doors in the house! having to be there when she has a bath or shower just in case !When going up or down stairs – being in front to catch her.Having to have guard rails on the bed so when she has a seizure at night she doesn’t fall and hit her head on the floor or cabinet.When she’s crafting any scissors, needles, pins need to be put down if i go out the room for even a second. We have a buzzer system so that if I’m in another room Jo can alert me if she feels a seizure coming on…. or the buzzer activated when it hits the floor. It has about 80% success rateWhen we are out we link arms so I can prevent injury to a certain degree if she falls outside on the pavement.
SUDEP (sudden unexpected death in epilepsy patients) is a factor and we know it. Jo has all the risk factors and so keeping her safe is my priority, she’s my daughter and I love her so much.I live with the knowledge that every seizure may end in ITU (intensive care unit)… or worse.
The mental strain and physical strength needed is great.
Emotions run high on many occasions in our house. Understanding between family members is not always easy and I have to be there for jo – who else has she got. I know very few people who can cope with the the physical and mental strain of Jo having a seizure. They say its ok and they can cope but when they see Jo at her worst many Freek out not knowing / not remembering what to do and stand mouth open and freeze. – Including her father !
People don’t realise that every day Jo is in pain. to watch your daughter suffer day in day out is an emotional strain that no -one (unless they are going through it) understands.
Life is a mixture of pain, seizures, emotion, depression, but also of the great courage and strength I see Jo going through what she does and I feel I have the easy bit sometimes. I keep strong for her but she is the strong one coping with the physical and mental pain day after day. In the end we work together we both need each other. I will never underestimate the strength that is inside that daughter of mine though.
My mum is a very special Mother. She has raised a independent minded, confident, strong lady through more adversity that many of us can even begin to comprehend. Her unconditional love and support never waivers. In addition to her strength and courage, she has had to face the horrible world of seizures, epilepsy and hospital visits.
She has sat by by my side day in and day out and watched me get poked, cut, poisoned and sedated with drugs and she can do nothing more than wipe the tears away, hold my hands, hug and pray that something will work.
Mum lives on little sleep and spend countless hours in small, cramped hospital rooms and bedrooms sleeping on chairs with the stress of seeing me go through countless seizures and seeing the condition slowly wearing me down and appearing in desperate eyes . When I finally sleep, she is searching, asking, why us? preying to find help from any source, from any person or place that offers the tiniest shred of hope – finding out that private care is too expensive is a desperate blow.
There are other Mother’s like mine who go through the same strains and they have to also deal with the life around them going on without them being able to be present.
These Mothers… These Epilepsy warriors deserve a very special recognition to know how incredible they are and hope that one day you get that news you need today to help you to continue strong on your journey for a cure ! ♥ ♥ ♥
The countdown to christmas was once again a lot of fun, Though I didn’t decorate the house I did go to a few gigs with a band and I did get to see the coca cola truck which was on my bucket list !
It wwas really lucky really as I was due to go with a friend but had had a night of seizures and felt terrible. Mum said there was no way she was happy with me going out with someone else feeling and looking (mums can be so charming sometimes) like I was.,… However she was wonderful and took me herself. Despite the struggle even getting me to the car !.
We got there mega early by about 2 hours however were busting for a coffee so decided to take a very slow unsteady walk to maccy D’s and grab one. then come back to the car for a rest. – On our way to maccy d’s there was the big red truck in all its glory… all shiny and with the lights. They hadn’t really set up but the truck was all I’d come for that christmas spirit was all around that truck.
Here are a few photos we took…. I totally loved my time spent with the truck and we came home and crashed.
The rest of christmas countdown really isn’t worth talking about at this point however I will say I made many really good and true friends.
Night all xxx
Well the day came and although I’d had the night from hell that for once wasn’t caused by my problems made it.
1 seizure and a headache before hand ment it was a struggle but I was so determined to get to that concert.
To me the KCCB concert makes Christmas. Band family and normal family – the audience, friends , the music, lights and the buzz of such a amazing amount of fun and music on one stage – being part of that is just amazing.
At first back a few weeks and up until the last day I was unsure if I was going to go because at band practice it’s ok , I’ve got use to people seeing me with oxygen but on stage I wasn’t sure if feel confident enough. However mum persuaded me that it doesn’t matter what I look like (within reason!) it’s what The band sounds like is what people have come to see. There was the inspiring words I needed.
The concert went really well. It was a huge buzz and I loved every minute of it – even the bits of music I wasn’t sure about went well. Mum said it was the best she had heard the band so that’s got to mean something !
So wonderful time had.
If you want to hear the band play I’ll post dates of the next concerts in January
For now I’m gona say goodbye as I’m off to the last band practice of the year and social.
Take care and merry Christmas
I Will be doing very few Christmas cards this year. However it means nothing to what you mean to me, a card will not define our friendship any better, it won’t make us stronger and it won’t mean we won’t talk. However it will cause me more stress, and make me even more tired than I already am this year. Christmas this year has jumped out on me like a ninja on roller skates and I’m just not ready for it. I’m not in the mood for the tinsel, dusty decorations or even Turkey! I’m not being bah humbug… I normally love the run up to Christmas but this year the only thing I’m looking forward to is the band Christmas concert. The rest I could easily do without. Christmas seems far to commercial and the real meaning? Well your be hard pushed to find it anywhere amongst the glitter, tinsel and fairy lights.
Last year I worked so hard putting up trees, decorating the house, making Christmas cakes and having people over that by the time Christmas came I felt so ill I didn’t want to know. In fact I spent part of the run up and then new year in hospital! This year I’m taking a step back…. I’ve done little cards, am not decorating the house and not having a tree. We will probably have a turkey dinner but if it was up to me I’d probably just have stew or pasta and I will go to the band Christmas concert cos to me that makes my Christmas. As for parties, gatherings and the rest…. Well it can be left. It’s not what Christmas is about.
One of my resolutions last year was to not be pressured into doing things that I know will cause me pain. Well it’s taken a year for me to actually do that and it starts at Christmas. So despite no cards, no tree, no decorations, no lights, no gatherings round mine with friends, late nights lots of food and things, it doesn’t mean I’m not celebrating and it doesn’t mean I think any less of you it just means I’m learning to take care of myself. It means I’m taking a stand. Just because someone says this is what Christmas is it doesn’t mean it’s how everyone has to do it. So I’m not bah humbug I’m trying to play a game this year and it’s to stay out of hospital!
Merry Christmas to you all
Well I know I’ve been really lacking posts recently. It’s no secret that I had been planning big fundraiser at my house, but how big it turned out was a surprise even to the optimistic me!
I struggled but the planning and organising was worth it… There were lots of other background issues happening at the same time and at times I felt like I was being suffocated by my own ideas and no matter what my friends said at times I thought it was all going to be a big disaster.
The morning of the fundraiser 19th October the heavens opened! I finished setting up and then looked out the window nearly turning to tears… Who was going to turn out in all of this? I continued to be busy and sort things out and friends who were helping and doing all sorts of things arrived and I was distracted from feelings of dismay.
1pm arrived and people started to come through the doors… Wet neighbours poured in. Neighbours round here are supportive and know me so I expected this. I thought that was it as they all came at once yet people who I didn’t know started to come through the door one by one two by two! Then 8, 10, 12 and I stopped counting people were walking sideways through the house to get through the stalls and displays. It was a sigh of relief but utter panic as I tried to see to them all.
The end of the day everyone was exhausted. We took only a couple of pictures that day because we were so busy.
The total raised was £450 !
Mum and I next to the epilepsy table
Life can be stressful. But this week proved to be more stress that even I could have bargained for.
Ive been manically organising and preparing for the fundraiser I am doing for Epilepsy Action.
Its called Jo’s Epilepsy Awareness tea party. I am doing it as part of epilepsy actions tea break however I thought the idea of a coffee morning was too boring and while I was laying in my hospital bed in July thinking what I could do I came up with what ive ended up with!
I am having craft stalls bric a brac and sales tables, tombola, glitter tattoos, name the bear, quiz, sweepstake, tea coffee refreshments and cake and live music. its all a lot to organise and plan. Despite it all being written on a piece of paper looking all neat and tidy with coloured pencils I have a conservatory full of untidy boxes, tables, epilepsy table, raffle prizes, tickets and all sorts of things i didn’t plan for!.
Ive been working so so hard i’m exhausted which makes emotions run ragged and then the events that have happened this week were just enough to make the tears run. Anyway let me tell you about the fundraiser.
My friends and family and neighbours have been amazing. They have been turning out their draws and cupboards to find things for me to sell and raffle and use that is why I have boxes everywhere ! when we started mum said to me… we don’t have enough to sell ( id started collecting things and i knew we would have enough) however by the end of sorting through bags of stuff from my lovely neighbours we had plenty… in fact we had 2 tables, one book case and a clothes rail full of things to sell !
My other neighbour was doing the tombola and her mum the teas and coffees. My friend Sue from band was lovely enough to offer her glitter tattoo services and make all the willing crowds be glittered for the occasion ! i ended up having three myself !
Unfortunately my other friend couldnt make it as she was unwell.. that was one reason my emotions were high. Shes my best friend and i miss her loads. Get Well soon T XXX
It was all worth it in the end though all the hard work, preparations and organising. We had crowds of people turn up despite the yucky weather and it was a happy day had by all. I was literally run ragged by the end of it feeling quite unwell but I enjoyed every minute.
I thank everyone who came and everyone who helped out.
THANK YOU SO MUCH FOR HELPING ME RAISE MONEY AND AWARENESS FOR EPILEPSY
The whole reason i started fundraising and raising awareness was I went to America in May – June 2009 and out there my life was totally different. Everyone knew what epilepsy was and how to deal with it. they all knew i wasn’t drunk or a lunatic and they helped instead of running away.
This is what awareness can do.
I want to keep raising awareness of epilepsy until everyone in England knows what it is. I want people not to be afraid of me if i fall. I will not stop raising awareness. I want to make a difference in the world of epilepsy awareness. I also want to help find a cure and to do that research they need money. This is why I’m fundraising Im fundraising for a cure.
At the fundraiser there was also a epilepsy awareness stall. it had information, photos and info on from when i was in hospital. it had teddy bears with EEG wires and all sorts of info and leaflets for people to read, take and learn.
I really hope that on Saturday I made a difference to a few people, the way they think of epilepsy and maybe taught people something. I hope i raised a little more awareness. I know I raised some more money for the cure…. so far we are nearly at £300 ! and im still counting.
So was there anything I was disappointed about? just one. The people who I support in whatever they do did not come. not even a sorry couldn’t make it on my FB page. Also my mums side of the family didn’t support, not one of them. it just shows that there is so much more work to do !
for now id like to just leave you with 2 words.
Thank You !
Sorry no updates in a while but I’ve been planning for the fundraiser whih took place yesterday. Now that is over I will start to get back with my keyboard and do some more writing for you guys, for now in resting and tidying the debris that’s left but I’ll be back very soon!
To those of you that came… Thank you
This is just a quick entry to explain what happened today and why I’ve not really spoken to anyone and said yeah drs fine, 1) because i’m too exhausted and 2) because I don’t know whats what yet.
Well today after a night of head pain and added noise of a cold and windy night and out back gate banging in the wind and hence very little sleep I toke to a day at the dr.’s…. little did I know this at the time. The 1hour job ended up taking 4 hours! A lot of waiting was involved and Im now typing this after having a sleep and I still feel exhausted!
I left the house at 8:45 and managed to get my appointment with the dr, We just went over what had happened over the past couple of weeks and made some minor medication adjustments and then was sent for a ECG. Last time I had a ECG my heart rate was slow and as I am now on the new drug which can cause problems with the heart they are keeping and eye on it. I was really pleased when I asked the nurse from behind the curtain if my heart rate had gone up and she said yes… I thought this was going to be far better than my last appointment. How wrong could I be.
I got dressed and the nurse said she would show the dr. Well it turns out there was something wrong with the ECG this time… I was ready for it though as Id been given a copy of the ECG which read “abnormal ECG”. I was tired, cold, my head and feet hurt and I was fed up with waiting !
An hour nearly passed in which time all things wonder through your head. Finally the nurse came back and blurted some stuff which I have no idea what it meant “A Junctional rhythm with non-specific ST and T wave abnormality – Abnormal ECG”which was pointed out to me on this paper followed by a the doctor wants you to book another ECG friday afternoon with an appointment to see her afterwards. Well i though i’d never get an appointment for that soon and for both at the same time… well actually I did which is unheard of at our surgery… normally I’ve been booking my ECG’s a week and a half beforehand. So mum was standing looking kinda freaked out… to be honest Im not overtly worried, Yes I’ve had some chest pain but this isn’t anything new from my last ECG and nothing bad has happened yet so why worry what a few lines on a bit of paper say!. Friday is just 2 days away so we will find out more then. For now i’m not thinking about it.
Needless to say being at the dr’s for that long was exhausting, I’ve had a little sleep and now plan a long hot soak in the bath.
Other than the escapades of today things have been slowing down a bit. The headaches are easing although still getting on average 3 attacks a day. Im now able to concentrate a bit more on the fundraiser and am making awareness ribbons and other things ready for 19th October. Its all quite exciting as i’ve never done anything this big and organised the lot before. Its going to be really good though and Im really hoping people turn up so we can raise lots!
Well Friday I had my repeat ECG. It was a bit of a nightmare and I’m putting it down to being Friday 13th even though I’m not really supersticious. The surgery computers had crashed and that included
the ECG machine. They finally got half of it up and running so I was able to have the test done. The dr came in while I was having it done as she wanted to see it. It turns out that the on previously had shown I had first degree heart block. The dr was hoping that the heart would recover and only do this occasionally and recover in between which it looks like it does. At least I know know why I get my chest pain every now and then however good news is that so far I can still stay on the pills but need close monitoring.
I was really surprised this morning when I woke up to a link I was mentioned in on twitter. I am still relatively new to twitter and don’t know many people on there I don’t have many tweeters? or followers? It really is all a big adventure at the moment. Anyway I followed the link to find that what Myself and the lovely reporter were talking about last night was already done and live online!
I had been asked to do the Thursday thought for the this is kent online column, Its part of the Herne bay, whitstable and faversham times newspaper group. I was really touched when Liz said my writing was good. I still find it hard to believe that anyone does read my blog. So this was very touching.
Anyway the entry “stop and smell the roses” was used for this particular column.
Its something that I think everyone will take something from wether you are a high flying businessman with no health problems or someone like me who doesn’t have their health and is struggling. This is an article I like because it gets over the point that we are all special.
If you want to have a look at the column online please Click Here.
Also if you go on twitter, drop me a line. I dont bite and will talk to anyone if they want to talk about anything that my blog mentions. Whatever your situation, however bad you think things are… you are NOT alone.
This Blog is just to say a massive “THANK YOU” to all my friends and family for their kindness.
For all those people who are sending messages and prayers of get well soon, and for my close friends and family who are looking after me through this tough time.
I have so many messages and I do read every single one of them even if i dont reply to all.
Here are a few of the things i’ve been sent and messages and thoughts. Every single one of them im thankful for. There are far more than what is in this blog so please dont get offended if yours isnt here. I cant possible put every message or picture up but maybe I will start to do videos when I get better or something, I dont know. I have alot Im planning at the moment so keep you posted.
for now all I can say is thank you to you all.
|Picture Taken from when I had sleepover
In the studio. I made this fish to keep
swimming out of a sparkler!
|Thank you to my Bestie Lara for this beautiful card. xxx
|A chant from a special lady I know xxx
|Lots of special wishes from special people xxxx
This picture was made for me by Lara.
So so cleaver.
|Balloon and fluffy from my bestie Claire
|these are from my best friend Linda
the necklace is of a hand holding a sparklie ball.
we both have one cos we hold each others hand and both like sparkles.
I also got nail tips, nail decorations, Sellotape pretty bits for scrapbook,
magnet, tinkerbel necklace and some sparklie tights!
|More beautiful cards
This is a case I designed and mum got printed for me
|Beautiful bracelet made for me by a lovely lady
It says “jo, Just keep swimming”
|A lovely lady I know from a band brought me these bits back from
her holiday on the Disney cruise line. She knows I love disney.
I can not get over how thoughtful the gifts were but also that they
were presented so lovely. Wrapped in purple tissue paper and minnie mouse
paper and then put into a pretty box with sparkles on.
XXX THANK YOU HELEN XXX
|Pirate bandana from Helen “oo ah!”
This photo is of a lovely Necklace that arrived, as complete surprise and was from my best friend Lara.
I know ive said thank you already but thank you again… he is so cute!.