Who am I?
A mother a wife ,
Someone from another life….
I haven’t got a clue.
When I was little I was all alone,
Aged 17 i left home, around the world I roamed.
Having so much fun,
Much more confident I had become.
I went Sailing on the sea,
Young single so happy and carefree.
Feeling in control,
Yet no plans with life I’d just roll.
Maybe that’s life’s mystery,
The way to be ultimately happy.
Not to plan too far ahead ,
To see what happens instead.
Fell in love and started a family,
Lots of adventures we were very happy.
I had painted a picture,
Of how I wanted my future.
Illness and disability ruined that dream,
Or I could say my canvas has been wiped clean?
But who am I, how do I re start ,
I’m not 17 I’m middle aged it’s hard.
I have a blank canvass the choice is mine,
Find myself…. learn to live or just wait to die.
What shall I do today?
I’ll take the kids to the park to play.
Or maybe climb a hill ,
Reaching the top looking down is such a thrill.
Maybe I can go shopping,
Buy a new outfit for the weekend to go disco bopping.
Building sandcastles on the beach,
The sun so hot biting into a really juicy peach.
Go for an adventure on my bike,
Round mountains , lakes through dykes.
A bbq under the stars ,
Planning a trip to the moon and then Mars.
Maybe go to a gig to watch a live band,
Dance and laugh all night with a drink in hand.
Wake up !!!
I quickly dry my eyes,
No one to see my cries.
It was all but just a dream,
Nothing is what it seems.
The truth is hard to bare,
I’m stuck in a wheelchair.
So am I going to just give up?
Is my life going to stop?
All isolated and alone,
My only company my phone.
Things have changed I’m not going to lie,
But every day I am going to try,
Go on adventures ,finding a way,
Knowing that I will definitely get there one day.
The Year has started with a bang ! Pleased to see madness bringing in the new year (at home watching the tv ) with my 3 youngest.
Husband was working as usual . We indulged (big mistake ) and attempted to sing Auld lang syne getting fed up half way through as we still shamefully don’t know the words.
Later that evening after husband got home (thank goodness it was after) the middle one threw up everywhere having indulged a little too much eating doritos and malteesers together .
At this point the stresses of Christmas, having the extension built over Christmas and shall we say a slightly challenging teenager I was forgetting to look at my end game goals .
On my return back to the gym I thought I’d go for a long handbike ride but take it slow . I did level 20 for 20 km in 84mins !!!!! What a start 💪
All going well at the gym my refuge , therapy , place of hope , my future as that is where I will get strong enough to make things happen for myself. Then BANG my Benign positional vertigo or bppv for short came on .
BPPV is caused when loose chalk crystals get into the wrong part of the inner ear. These microscopic crystals should be embedded in a lump of jelly. The crystals weigh the jelly down and make that part of the ear sensitive to gravity. The crystals are constantly being re-absorbed and re-formed and over time fragments come loose. Lying flat can then occasionally cause some of the loose debris to fall into one of the semi-circular canals; the parts of the ear responsible for sensing rotation. Movement in the plane of the affected canal causes the crystals to move along the canal, stimulating it and giving the sensation of rotation.
The vertigo is generally rotational (like getting off a roundabout) but sometimes sufferers, on lying down, will feel that they are falling through the bottom of the bed or, on getting up, that they are being thrown back onto it. The classic provoking movements to induce BPPV are: lying flat, sitting up from lying flat; turning over in bed; looking up (e.g. hanging washing) or bending down, especially if also looking to the side. The duration of the vertigo is brief; usually five to 30 seconds but very occasionally lasts up to two minutes.
I’ve had this reoccurring for 8 years now . To clear it i had something called the Epley maneuver preformed on me .
It’s been in both ears but the right ear was the worst . The Epley would maybe clear it for a week then it would be back again.
So about a year and a half ago I had the operation to get my right ear plugged. This is supposed to stop the particles from moving. I have lost some hearing and sensation but until this week it did settle.
Yes you’ve guessed it … my world had started spinning again. I wish I could say it’s due to a bottle of wine but no it’s not. An A&E doctor did try and clear it yesterday for me but it’s not worked . From what we did yesterday it looks like both ears are affected 😞.
I would physically and mentally like a break . It’s not going to stop me though I’m still going to be doing what I do I’ll just need to make sure I’m seated or holding onto someone.
So if I look drunk or sound drunk I’m most probably not as I don’t usually drink but if I’m totally stressed I might be persuaded to have a tipple or if I’m going to my friends house as she makes good cocktails.
Hope everyone’s New Year got off to a good start. I’m working towards my goals keep working towards yours.
Exciting times ahead this year !
1. I’m going to be a grandma (well mar mar joe ) in may.
2. We are fortunate enough to be getting a ground floor extension built. It’s been a nightmare having it built over Christmas but the builders are doing an amazing job.
The ground floor extension will make a difference to my independence and hopefully mean I can do a lot more for myself and my family.
Also we are getting slopes put on both doors so I can get out safely.
I’m really looking forwards to being able to get into my back yard in the summer with the children.
One of the biggest things about the ground floor extension is having a toilet downstairs. My beloved camping toilet can finally retire and the children can finally have friends around for tea or to play without the fear their mum needs to have a wee in the hallway whilst they are here !
The workmen are doing an amazing job despite it being so cold wet and windy at times they have battled on and it is looking fantastic so far .
3. Bendrigg trust is booked for the summer a weekend for the family again and then a week just for me.
It’s a fantastic place that enables people of all abilities to be able to do activities just like everyone else. They have adapted equipment and trained staff to support people to do this.
4. I’m continuing to work out at the gym . It’s more like physiotherapy for me in a way. If I don’t go I stiffen up and get sore. I’m lucky in that if I stay focus and relax my ventilator works for my vocal cord dysfunction whilst I’m exercising.
I want to get as strong as I can on this journey.
5. I recieved a letter from London regarding an appointment for being assessed for a months stay at a neuropsychotherapy hospital for treatment.
6. I’m looking forward to getting out on my handbike more this year with the kids.
7. Going to master using public transportation.
8. Superhero tri again hopefully…..
So many good things to focus on .
2018 some parts were fantastic but some parts were blooming horrible. Lowest , frustrating time in my life.
2019 is going to be amazing I just know it …. I can feel it in my water !!!
Wish you all a good year too 😁
So the end of 2018 draws near
It’s been filled with laughter, excitement, pain and tears.
The lesson I’ve learnt is to give things a go,
Adapt, adjust, you might manage it you never know.
In 2019 set yourself some goals,
Maybe skydiving, playing golf or going to bingo with the girls.
Anything you said that you wanted to do,
Just give it a go I bet it will happen for you.
HAPPY NEW YEAR EVERYONE! All the best for 2019 may all your dreams and desires come true….. go chase them people. 🙂
Please stop it going round and round,
Like the waltzers,Ferris wheel or the merry go round .
My head hurts I’m so dizzy I’m going to throw up,
Please just stop I beg you I’ll give in and I give up.
I started thinking I’d be able to see,
All the the reasons things were happening to me.
But no …. It’s never going to happen so let me off,
You can all go away the medical profession can just f**k off.
I’ll drag myself forward, live how I can ,
But I hold so many of you accountable, for not giving a damn.
Just a name in a file known as a complex case,
You don’t read the notes or even look at my face.
I often wonder just what you went to medical school for….
Only to write me another prescription and show me the door?
I’m not happy with that as I want to get better ,
Not given lots of drugs and left for the grim reaper.
Don’t you hear me don’t you understand my words,
Do you know how fustrating it is not to be heard.
I came here today in the hope you would be different,
That you’d start from the beginning and make a note of anything significant.
Only you flick through my file just like all the rest ,
Not really interested, not doing your best.
It’s too complex lots of Drs’ involved and results to be read,
It is just so much easier to agree with what the last Dr said.
Of course I would fully accept what i’m being told,
If every consultant that saw me added his results to the mould.
So then the bigger picture truly adds up,
It’s not just horse s**t being made up…….
I feel like I’ve been in an NHS whirlpool for a long time.
I know that medicine isn’t an exact science and not every condition is going to be able to be diagnosed. It just seems though that the most basic of things aren’t being done to reach a diagnosis of a patient.
There isn’t any between different consultants, different NHS regions and most importantly most reports of treatment or appointments don’t get back to your GP so you have nobody to coordinate your treatment or care.
If your illness requires different areas of your body to be treated then the maxillofacial consultants for example will just deal with your face and mouth they aren’t interested in the problems with your waterworks.
So you have lots of people looking at bits of the jigsaw but it feels like nobody puts it all together.
I also have relatives on my dad’s side that had leg amputations due to vascular issues with their legs . It was all missed and not really understood why as neither smoked or drank.
On my mum’s side my grandmother died in her 50’s because of heart problems and my aunty has issues with veins in her legs and migraines and neurological issues and symptoms with other family members.
It may all just be coincidental………
My daughter is going to liverpool to be tested for Ehler Danos as her shoulder pops out every day and she has loose joints.
Other children of mine have issues with their joints too.
As it drags on I’m conscious that whatever is going on could be understood better and consequently treated better.
I’m not even sure who’s in charge overall of my care? My GP didn’t have much of the stuff to coordinate.
That’s where I’m at anyway going around in circles. It’s pointless trying to get someone to look at the whole picture , I don’t think Drs work like that anymore.
I’m just going to focus on getting as strong as I can and my family too. This year I have accomplished so much . I want to find my independence in 2019 so that I can show my kids that no matter what is going on with our bodies we can still have fun . To focus on other things than the pain that we feel each day.
It’s going to be a great year !!!!
I’ve come to a big realization this weekend. I’ve no idea if it’s due to the fact that I’ve been on anti depressants for years now and my Drs’ practice messed up, didn’t put them in my medication pack so I haven’t had any for 10 days despite trying to ring and sort it out…….
Or it may be the fact that my emotions have been all over the place as it has been really stressful at home with a number of things happening.
This time of year is always hard for so many parents trying to find pennies to make it a special day for their children. To top things off , we’ve been hit with the dreaded winter vomiting bug in this house too! My youngest even had to go into hospital with it as he was really poorly . Oh and we have vomit over most of the bedding that we own and a washing machine thats decided to brake right on cue…. Merry Christmas !
Despite all this madness I still feel a little moment of clarity.
For the last 8 years since I’ve been ill I’ve constantly been beating myself up about all the failings I felt I’ve had as a mum , wife , woman.
I have felt trapped and not in control anymore. I’ve lost all my confidence, I don’t know who I am .
I focused all my energy on getting stronger to benefit and do more in my role as a mum . I think mainly through guilt because we were so active as a family and it was such a shock when it stopped.
It’s not working. I’m not happy there are so many emotional issues around our family (not the place here to go into them) but you can imagine from the lack of support from services like young carers and other community services in the area it has taken it’s toll on everyone.
I had to take a step back. I actually wanted to wash my hands of everything as I’m so tired. Those that do know me ( not many ) but some know that I’m one determined stubborn lady at least , know that I will keep trying to see if I can find a way.
This is what I came up with….
I think I need to get stronger and build my confidence up and feel comfortable and genuinely happy in my own skin. I honestly don’t believe that I can be happy as I am and if I’m honest hoped that as soon as the kids grew to a point where I could disappear I would.
It’s totally wrong to think like this I know , I’m just being honest .
It’s not like i sit at home watching tv thinking this is going to be a rubbish day either. Partly it’s because the stuff I want to do, like doing, requires equipment and money.
There’s some lovely people in a Yorkshire mobility that will help me apply for grants but no idea what suits my needs best as it’s all about that compromise and condition then I feel guilty asking and taking people’s time but I just need to get on with it. The other thing is money. Having children I feel guilty spending on myself for myself , it doesn’t sit right. I have to say in all the 8 years its been the first time a Mobility place has ever offered such assistance which is so gratefully received.
Then there’s the other days where I just don’t feel well physically.
The truth is I deserve to be happy too and if I’m happy that will surely make me a better mum a better wife a better person?
So this is my mission and goal for 2019. Yes obviously still keeping on with building on a functional family but taking some time to build on a functional me. I need to be happy . I need to feel comfortable with me again.
Would love to hear from anyone who feels the same or has suggestions on how to achieve this 😊
Who shall i be today
What mask shall i wear ?
Let’s make it bright a cheery
One that matches my hair.
Inside I feel so fustrated and sad,
No one wants to see that as it makes them feel bad.
Grab my lipstick and draw on a smile,
Hope that it’s durable and lasts for awhile.
Use waterproof mascara in case my eyes leak.
I’ll Just dab with a tissue and smile but not speak.
I’ll listen intently and laugh on que,
Try not to frown people notice that too.
I won’t look at anyone or they’ll want to talk,
When it gets too much I’ll sneak out for a walk.
Go off to bed early and go to sleep for the day ,
I’m so proud of myself i survived hip hooray!
Sometimes we just have bad episodes. During these episodes we need to go into survival mode.
Do what you need to do to get you through it. Also realise that it’s just a moment and this moment will pass.
Can’t say much more than that as I’m having a moment.
Take care of yourselves 💞
Today I feel so tired,
My brain is wrongly wired.
I can’t get out of bed,
Really bad pains in my body and head.
So i close my eyes and drift away,
To all the nice places I’ll visit one day.
Think of the good times don’t dwell on the bad,
Or you’ll spend the rest of your life feeling incredibly sad.
Don’t dream too big to avoid disappointment,
Learn to enjoy the most small precious moment.
A BBQ with friends or a hug from a child,
It doesn’t have to be outrageous funky and wild.
Just have your rest and then carry on,
Hopefully for awhile your pains will be gone.
Try To Focus on Positive Times
My moods and emotions have been so up and down this year. I get so fustrated at not being able to do what I want to do . This then turns into a downward spiral of feeling like I’m never going to be able to do anything again. Yes if you compare to what I was before I got sick I’m doing hardly anything but you can’t compare , you are at the start of a new journey.
Since January I’ve been going to the gym. Prior to this I’d been on such heavy medication ( 60mg oxycontin twice a day) yet still in pain but mentally dealing with it sat a in chair .
I couldn’t live like this so I asked for an alternative. I got told if i came off oxycontin I could have Nabilone a prescribed cannabinoid. It’s a great drug for me . It helps with my muscle spasms and pain.
This was the start of things changing for me. It’s not been straight forwards . Being more active has caused a few more problems but I’d rather be active with my children than sat in a chair.
This year I’ve been regularly going to the gym. I need support there sometimes just reassurance but my fitness is getting better and the staff are fantastic.
I’ve done 20km on a handcycle as part of a triathlon at Dorney Lake with Team Brit for the Superherotri.
I’ve been on a train journey.
We went to #Bendrigg Trust as a family and had an amazing weekend.
Rode the illuminations.
Went to watch Dirty Dancing and Billyocean.
Would love to watch JonBonJovi
Set yourself goals and work towards them . It doesn’t matter what they are .