Tag Archives: Uncategorized

New Years Resolutions


A New Year, a new start –   Yet people still hold grudges? 


We once again welcome a new year that brings with it a message of hope.  A dawning of a brand new chapter in our lives that shows us that it’s okay to let go of the past and start again. It’s like a yearly reset button that allows you to change whatever you like. It’s an opportunity to reinvent ourselves but only if you have the strength to keep moving forward.  It’s one thing to sit down and create a long list of New Year’s resolutions, and it’s another to have the will power or self-discipline to follow through with them.


What are you willing to do differently this year?  What are you willing to sacrifice so that you can finally live the life that you have always imagined? Will your change make other peoples lives better?  


A few people have said things to me over the last few days about things and people I know. Its got me thinking that this reset button called new year isn’t being used correctly. On the whole people are making pointless resolutions which they never keep. This year instead of sitting down and coming up with a massive list of resolutions, come up with one thing to do and then just do it.  You don’t need to prepare.  You don’t need to buy anything else to make it happen.  Just do one thing.


I can think of one that would stop the hurt and pain and stress of life for many people that I’ve been hearing about…… Stop rudeness to others, stop holding grudges however big or small. Get over whatever it is thats holding you back from being nice and civil to people around you. Its a desperate  waste of your life and your hurting others. 


When someone is In the situation I am you look at life very differently – every morning I wake up in my own home, every moment, conversation, feeling, picture, days out of hospital or with less pain, not being on oxygen is precious. I dont know what’s going to happen in the next minute, hour, day – every seizure could result in me not being here so in reality I don’t know what the future holds. I value every part of what I have. Every friend, every hug, every kind word, and more. Yes the pain gets me down yes the seizures get me down that can’t be helped  but when people get me down that’s when I get upset and cross because people can have more respect for others people can have manners, people can change their ways and start appreciating what they have – I wish those people who hold grudges, have issues with others and cause issues for others would take a look at their life and realise its not all theirs- it’s on lone. One day you won’t be here and its only memories that will be left. Do you want peoples memories of you to be bad – “that woman always had a grudge” – “that man never had a good word about anyone” ? whatever lives real meaning is, its  precious and too short to hold a grudge, cause hurt or halm to others or be a idiot.


Life is precious and shouldn’t be used to cause problems and issues for others. If everyone applied this rule to 2014 who knows the changes that could happen – life would certainly be less stressful, depressing and upsetting for many people. 
Make 2014 the year to change yourself and use your life for good and become a better person. If you can be nice, say something nice or have respect then just don’t say anything at all. Don’t make someone else’s life bad because you have a problem. 



As the ancient sage Lao-Tzu reminds us, “The journey of a thousand miles begins with a single step.”


Don’t waste any more time preparing — Just start walking and create the life you were meant to live!





This was published in the online paper thursday thought 
Click here to read it

A Mothers & daughter shares a Point of View

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 rate
When 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.

S. Mumford 




ABOUT MUM 
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 ! ♥ ♥ ♥

Kent Coastal Concert Band Christmas Concert 2013

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 

Christmas time!

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 

Xxx

Fundraiser!

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 

Heartbeat

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. 


Thursday Thought

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. 



People’s Kindness

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
XXX

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!.

"Epilepsy never makes me shy away from life"

A few days ago I got contacted by a lovely lady called Liz. She is a reporter and done the previous articles on me  and my awareness videos and doing my abseil (if you’ve not read them they can be found by clicking here Abseil article and here Awareness video articles).

In our paper there is a section about people in the town. I always thought people in this section were prominent people of the town though now i have been asked i’m not so sure what their criteria is.
Anyway I was asked and I agreed. I got sent some questions and replied and this is the result.

Click here to read the article online

Planning a Fundraiser

While I lay awake with pain from the tip of my toes to my head after a severe seizure, what do you think I think about? how unfair life is? how I wish things were different? oh boy how depressed am I?

No … I think about what Im going to do next. I think about what I can do to make a difference. How can I raise more money for epilepsy action next. I think about events, ideas, purple things (the colour for epilepsy is purple). 
Well a couple of weeks ago I was doing just this. I had suffered 3 seizures that day and was laying in bed with a cat by my feet and I had a idea pop into my head. Id read the latest epilepsy action magazine which had a advert for the “epilepsy tea break” I decided I would do a fundraiser around this idea but expand it. I wasn’t content enough with just a plain ld coffee morning.. i needed something more, something that would need organisation and planning. A fundraiser was the perfect idea. 
I broached the subject to mum… knowing she hates events, crowds and anything that needs such organisation people I wasn’t expecting the positive reaction I got however that was it then… Note pad and pen out and I’d started planning. 

The plans  are still in the process of being organised but the event called:

“Jo’s Epilepsy Awareness Tea Party” 

will be taking place on Saturday 19th October 

between: 1pm – 5pm GMT

At: my house…. 4 Mill View Road, Herne, Herne Bay. CT6 7JE

Please come along 

There will be craft stalls including “dream a little dream”: by Lara Simpson
who makes stunning dream catchers 

Epilepsy awareness stall

Crafts by Claire 

Glitter Lining crafts 

Tombola

Refreshments and Cake 

Competitions 

A quiz

Glitter Tattoo’s 

Nail art 

and more. 


More details will be given in due course