I thought they were meant to be dragons???.

Published May 18, 2015 by hmspebbles

Yesterday my (almost) mother in law Sheila died.  She had been battling with dementia for the last few years which had seen her bubbly, whitty personality change. She became more confused and frustrated mostly due to fear of not knowing what was wrong and also lack of understanding. Being able to understand a condition gives you the power to learn and knowledge to fight it but as it slowly takes you away that itself is the battle of remembering. 

When someone says mother in law you hear the horror stories, they scary, they bite and will hate you no matter what as you will never be good enough for their son and maybe initially I had a harder battle than others due to the age gap and situation but I was myself, daft  chatty, clumsy and always left them with a smile (I think a good smile even if really thinking did she really just say or do that….) 

So I never met a dragon, does that mean I did well? Yes I think so we chatted about both our regular hospital visits, my craft which kept me sane even if it drives my partner insane my untidyness but he knows it makes me happy and is a distraction from my own daily battles and use it to make others smile.  Also would show her pictures of my nieces as I am a very proud aunty and she would always ask about how they were and giggle at the photos and videos of them being rascals.  I do think in the end she thought I was a mean (almost) daughter in law though as I think she thought they were my children and I never bought them to see her!!!! 

But hopefully I allowed her a good trigger memory at Christmas, I heard she liked Channel perfume and due to her age it would have been an older version, but it appeared there were 2 different possibilities.  So mission accepted to try to locate the correct perfume and to see if would help with memories and more importantly add a smile for the day.  I managed to find 2 possible scents and one set came with a hand cream and she always liked to have soft hands and feel things between her fingers, so I took the plunge and went for that. Christmas Day I found out it was the right choice as her face lit up as she struggled to tear the paper and recognised the brand name and then the bottle and remembered ‘ooh posh!’ But it wasn’t until she could smell the perfume and you could see the memories return and flick past.  I was so nervous as it wasn’t clear if the perfume would trigger good or bad memories as smells can do that can’t they, but I was lucky. The hand cream was great as it meant that she could still feel glamorous and get the magic memory hit too.   

So having avoided the fire breathing, daggers and other things which could have happened we laughed and yes did take the mickey out of my partner frequently (sorry) hearing stories about what he did when he was little, sadly towards the end those stories become few and far between and more confused, but she would always try and get a dig in and try to remember where the embarrassing pictures were!!!

So fire breathing dragons might be real for some but me Sheila was not fire breathing, great to chat too and we had the same sort of naughty sense of humour, she sadly was too poorly to hear about the naked butlers (a friends hen party) as she would have loved hearing about that and no doubt would have loved an invite and laughed and passed comment on seeing the pictures!!! 

Sheila last week I bought something for you and also began to develop an idea to try to help you and many others with dementia and other degenerative illness’s as well.  Sadly you never got the chance to see it, it was basic and not designed for adults but something to allow sensory touch.  It has inspired that creative mind of mine to create something to help others and don’t worry I will make sure that I do your memory justice and find a way for smiles, memories and triggers to be created and maintained as well as touch anxiety being eased, sorry you won’t get to share the moment but your the memory behind it. 

Sleep soundly Sheila, you hung on and battled hard and finally went to sleep as dementia week began – it’s message is do something new and at the moment it will be raw for her sons and family will be doing something new, learning to cope without their wife, mother, nan and grandma. 


Dear pain……

Published April 6, 2012 by hmspebbles

Dear pain

Please can you explain while you feel it essential to gate crash my day every day….. For the last 2 years without fail you have been with me daily on a scale of 4-9 which as you know is awful and results in tears on an almost daily basis yet you still persist.

I am writing to you to find out why? I don’t want the usual but it’s part of your condition, because I want to let you know just how much I care as I have learnt all this time and time again but why? You don’t respond to any pain medication when it is used, which is never now as it appears to piss you off and make you angry and leave me in a worse situation than I was in before.

The hospital are planning now because after 6 years of me telling them how much you control me and how unwell you make me, which you seem to thrive on I must add. To go I and explore which part of my body you are attacking the most and to attempt to deal with you. You very well know how much this fills me with dread but I have got to do this. We have due to your persistence got a strong bond which is going to be broken, of that I can assure you. I am fed up with sleepless nights, nausea, hot sweats, being unable to walk, go out socially, stay up past 9pm whether I’m working or not…. Exhaustion, allergic reactions to food the list goes on.

So all I ask is please go away or at least climb into a little box every so often to give me some relief so I can enjoy my life, there are things I want to do, places I want see and dreams I hope to reach which I know you are determined to stop but for now please leave.

Yours faithfully

The endometriosis and crohns sufferer

The fake smile to cover the tears :(

Published April 6, 2012 by hmspebbles

How do I begin the last week in words, the pain from my stomach is tearing me apart 😦 its so painful that the smiles are not truly real, the tears are being held off cause I don’t think I would stop. Please NHS find what’s causing the pain as I am suffering and this is so hard, I’m being torn apart when I eat, when I move and it’s so painful. I know I suffer with endo but that pain is so easy compared to this as it allows me to eat, I am back on an even more stripped down diet to try to see what has made me so I’ll this time but I just don’t know. My face is burnt due to something and if the pain is so that it’s burning my skin, then what the hell is it.

Almost a year ago I was told it could be cancer and hear I am a year on fighting even mharder to make sure that I stay strong and find out what is wrong but slowly inside I am struggling.

Oops didn’t send it this is from Jan and camera day……..

Wow what a 24hrs it has been…….

Published January 12, 2012 by hmspebbles

Well after a 94hr week I’m exhausted again and it really got me thinking I want more time at home and also although I love my job I also love my creative side and have always wanted to be independent and have my own business. So I thought why not……

I went on the company house website and typed In the name I wanted to use 🙂 it all depended on this really, could I use a name which for so many yrs I have thought of and there it was 🙂 I have found out I can use it and this is the start of the thinking and planning and then look out world.

My creative ideas are all over the place and I need to rein them in a bit or a least write them all down and then think about what I can do and what would others want and although it will be a slow process initially I want to be a success so be patient and positive and dreams can really happen.

Life is for living and making things happen and I am making my dream happen 🙂 xXx

Dear Santa

Published December 13, 2011 by hmspebbles

Dear Santa,

I know I might be a bit too old to write to you at 29, but I just wanted to tell you about my year and see if you could give me my one Christmas wish this year.

My year didn’t get off to a brilliant start I was off sick and not very well, felt incredibly frail and frustrated and yet again I was feeling ignored by the doctors who seemed unable to make me feel better. But I took the decision to go back to work and use it as a distraction from the pain and what ifs. See I am a good girl.

After tests, tears and sadly only a few smiles this year, I have kept going but if there is something you could do for me santa, I know I am far to big for toys and presents and if you have to buy any donate them all to the children at local hospices please.

I do have one ask Please can I have that magic camera capsule so the doctors can see inside my body and find out which part is damaged, and also make sure that they will fix me, I have been a very good girl this year.

Last time I wrote to Mrs Claus and she knitted me a lovely hat, gloves and scarf set, please could you find a little space in your sleigh for a capsule.

Thank you

Heidi xXx

The never ending wait continues……

Published December 8, 2011 by hmspebbles

And so after 14m and 3 appeals to the PCT for funding, Mid Essex NHS have said no 😦 All over £520 which they won’t pay 😦 a capsule endoscopy is all I need to see where the problem is and to be able to correct it, as surgery as it is, is too dangerous……

I’m becoming urgent now and the cons is shocked about how the pct can still say no, so I’m being referred to London as an urgent case, hopefully they can find out what’s wrong and help me.

The bad pain episodes are becoming more intense and frequent as the damage and suspected inersuseption increases. She is surprised I’m still working but sitting at home with my time bomb inside of me would drive me mad. There is only so much Jeremy Kyle I could watch and I may as well deal with them at work!!

So it looks like St Marks it is then, and depending on what they find more major surgery but a stint in hosp and stitches so far this xmas has been avoided…….

I would sulk cry and complain but it doesn’t solve anything, so a letter to the mp to say how disgusted I am at the lack of service at the hospital will have to do 😦 My consultant supports me writing to the mp as she is shocked about how long its taking to know nothing, the consultants have tried every angle and now they can’t even be assured that they can even help patients due to budget restrictions. My consultant doesn’t promise patients things anymore, when did the NHS become in such a state.

But I continue and pull my socks up and fight on, the positive determination has got me this far and I will continue even further, stubborn is my middle name and what’s a few more months of pain and distress if I can hope there is someone out there who can help me and make me better.

My little stars birthday

Published September 17, 2011 by hmspebbles
Well long time no blogs, these really long hour weeks are def distracting and tiring but today isn't about me, my tiredness but about my star. 

My amazing special star which glows all year round and shines especially bright when I am sad or tired and means no matter where I am she is always close by.  

My star is my sister, called Candice, an amazing but sadly not very well little girl, who never cried, never complained and who laughed through her pain, her smile was infectious and always there.  Sadly this star was too poorly to stay with us she had a genetic disease which meant then when she could fight it no longer she gave one last smile and went to heaven to be an angel, a very special angel as well. 

She was 3 when the angels came down to get her and I was 4, I can still remember the day, remember the smells, the atmosphere and the lack of not understanding what was happening, what did all these things really mean.   

My mum and Dad came to pick me up from school and parked in the first space next as close to the door as they could, they had both been crying and I wasn't sure why, I couldn't understand why they would be so upset. Mum said something about needing to go home to get something for Candice and when we got home we went upstairs and mum asked me to pick out which of her 2 favourite cuddly toys I wanted to keep and which one Candice wanted to keep to take with her when she went to heaven. 

I chose to keep her cat, Candice the cat who goes everywhere with me, whenever I go away, to important meetings, (she hid in the car at my job interview!) school trips, guide camps, university, everywhere, she even came to my granddad's funeral after all she is part of the family, and she can make sure he gots to heaven and sees granny and June again.  

I decided Candice would keep her floppy zebra he was cuddly and she loved playing with him, never realised it would have such an effect on me cause even now I can't touch them and they freak me out, not the animals, not pictures, just the toy, my memory of what it means.  

After the toy had been chosen we went to the hospital, why did I have to go into the special room at the hospital? I had always wondered what was in there and then when I got to find out, there was Candice asleep, she looked all settled and I remember giving her a kiss and a cuddle and being told I wouldn't see her again, but when your 4 forever is till christmas time or when your 10 not forever and ever. 

I don't remember going home or much more of that week, until 3 days later when grandad arrived and he was at home when I got in from school and he had a present for me :) of course he did it was my 5th birthday :) and he bought me my 1st grown up pink bike, the Fleur bike, it was beautiful, so shiney and a proper girls pink I rode (well wobbled) it round the garden wow, how excited was I so grown up. 

Mum said I never cried when Candice died, I don't think I ever really understood, I knew someone was missing and to always make sure I was always good.  The one time I did cry was at christmas as I didn't know how she would get her christmas presents, the mind of a 5yr old hey :)

I was always told she was a star and she is cause when I look out and the stars are out I know she is there smiling down on me, making sure I am ok, staying out of mischief, following all my ups and downs and reminding me that no matter how far away she is, she is always there with us always. 

At 4yrs old loosing my sister was hard, but now I have shared knowing and loosing her to do something else, to show that life is about the little things and the big smiles and I am a respite carer to an amazing 11yr old girl who makes me laugh and we go out and have so much fun and I know Candice would be so proud of me, my sister had a disability and was disabled and she made me who I am. 

Shine brightly tonight beautiful as tonight is your night, happy 27th birthday love you always love big sis xXx