The Mask

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!

JQ

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 πŸ’ž

Who am I…

Who am I ?…I don’t know anymore.

I used to laugh so much, now I’m such a bore!

Broken, I can’t see what piece goes where,

I’m trying, doctors can’t even tell so why should I care.

Everyone says I’m still me but I’m not as this isn’t how I’d live my life.

Feeling completely fustrated and useless because I’m stuck inside.

My independence gone my freedom taken away,

That isn’t me, I’m being forced to live this way .

Acceptance NO I don’t want to give in.

I want to be happy again, I want to find a way of livin’…

I want to feel as strong as a lion.

Not as weak and vulnerable as a new born kitten.

It’s hard when you’ve been there and it’s been taken away,

Feeling Kicked out of your herd a leader yesterday an outsider today!

I don’t want to be here like this as it isn’t me ,

I’m shouting help but nobody hears or listens to me.

The injured Lion

You Can Take a Horse To Water ……🐴

I rode through the illuminations YEAH !! A bit of a disaster at the start though 😩. I had all these light up balloons left over from Theos birthday Party and thought it would be a great idea to attatch them to the back of my bike.

So we wanted to go northbound, the traffic had stopped at the lights an ideal opportunity for us to get to the other side to join the cyclists going North. As soon as i set off …POP …. POP ….POP….POP so bloody embarrassing as everyone was watching. Not only that all the strings got tangled around my wheel !!

We didn’t get very far and I had to call hubby to come rescue us . He was on standby with the van ,tools, oxygen etc anyway lol.

We set off again. It was quite scary with so many people around and lights ! I don’t like lights! But I really wanted the children to experience the illuminations. To a child they are magical. Going on a night time adventure is exciting.

There were people speeding past and my heart was in my mouth a few times thinking that someone was going to get hurt but they were in control.

My 12 year old Sam was fantastic at helping keep an eye on his brothers as that was another worry. I only found out about the event yesterday so I didn’t have long to organise myself nor did I have long to worry,sometimes that’s the best way .

It’s a shame not to see many other hand cycles ,trikes or adapted bikes around there was a few but not many. Let’s see if we can change that next year maybe .

I encourage everyone out there who is reading this now to think of a person who may just need a little encouragement. You see it’s not a case of taking the horse to the water and the horse will drink, the horse needs to be taught…. Just as a person who is really poorly may need a drip for nourishment to get stronger. Go to that person who perhaps was once a friend or is a relative and help them to start taking baby steps. Help them to start getting some enjoyment out of life and to see that can still do things but a little differently. Help them not to feel isolated and alone.

This will help with gaining strength and inspire people to maybe be brave and give things a go.

Companies that sell mobility equipment need to be pushing a more outdoor active range at more competitive costs. Businesses need to be accommodating to wheelchair users even actively encouraging them.

With so many talented people out there ,you should be able to create anything that enables people to be able to enjoy the life they used to enjoy for as long as they can physically endure.

All the equipment in the world isn’t going to change the horrible illness that cripples our bodes. Let me tell you it’s not always about us it’s about our loved ones needing a mother ,father sibling to be spending time as a family unit.

I know we all live in a busy world but we should look out for our friends, family and each other.πŸ˜πŸ‘

Just a thought.

Much love and happiness.

JπŸ’“e 😁

I Just Came To Say Hello πŸŽΆπŸŽΆπŸŽΆπŸŽΆ

I bet you are getting really fed up of hearing from me 😴I’m getting fed up of saying it but then I think of my kids and all the other kids that haven’t been able to get out of their houses again because:

Mum or dad are too ill

No suitable mobility transport to go places with family

Weather

No support to help

Terrible path and road conditions

There may be a number of reasons. This is why there needs to be some kind of community centre for children and parents to go.

A community centre for young carers, children and disabled/ parents that suffer from long term illnesses.

A place where you can have a brew talk through things . Play cards, dominos etc have information for resources in our area.

So please if you can help me then get in touch. There is no real support for young carers or isolated disabled families in Fleetwood Wyre and Fylde

https://www.facebook.com/groups/1556840474401957/

Joanne πŸ’‹

A Letter To Mr Jeremy Hunt MP.

Firstly i have to say that i’m a little upset that you haven’t taken me up on my offer regarding me relaying my experiences with the care I’ve recieved through the NHS and how i feel it could be run more efficiently and effectively so that everyone benefits but primarily the users of the service receive the quality of care they deserve, have been promised and lets face it should be given .

I first became ill approximately seven years ago . Im not going to go into the finer details (happy to in private) but lets just say several things happened to my body at once.

I went to my GPs problem one you never get to see the same Doctor so you can’t built up a relationship with them. They don’t know your history and let’s face it it really is pot luck if you get a good one or not. Within approximately 3 weeks after ruling out anything super major i was put on pain killers and told i had fibromyalgia.

I’d gone from being super active exercising four times a week, active with my children to barely able to do anything.

That was the start of my demise (is that the right word) as everytime i went back to the Doctor’s i saw a different one (that is if you could get an appointment) i just got more medication.

In agony with muscle spasms my husband took me to hospital and they started me on oxycontin. That was another big mistake.

I mean there was literally no help. I didn’t want to live. I couldn’t move . I was in agony. I wanted to die.

Little bits started happening in the background my Dentist referred me to maxillofacial. He became pro active in trying to help with the facial spasms and we seem to be on top of them mostly with regular botox injections because they can offer them at blackpool Vic hospital.

It was then discovered that i was stopping breathing at night but it was central apnea so had to be referred to a specialist lung function unit at wythenshawe who have been amazing and we still aren’t understanding what the heck is going on but they are fantastic there.

I was also referred to a pain clinic in Preston. He’s great and he worked with me in getting off these oxycontin because they weren’t doing anything. They were completely wrong for the symptoms i was having . I was given cannabinoid to try and that has helped. He also gave me steroid injections in my head neck, I’d have rather had botox as i know that works for me but preston hospital don’t do botox. Bear in mind i already have steroid injections further up in my head that the neurologist does to treat my migraine cluster type pain so I’ve no idea if I’m being overdosed on steroids 😀

So i have all these amazing specialist now treating me and after 6 years of hell I’m starting to feel a bit more like i want to live again.

The problem with having specialist all over in different regions is that they are on different computer systems. Tests can be repeated results aren’t shared so diagnosis delayed therefore treatment is and that’s unacceptable! Surely my files should be in one place?

Then if you are going to try and use the argument that GPs are supposed to correlate the information and make sense of it are you kidding me? I am trying to stick with one GP at my surgery and the poor man is run off his feet. I can’t get an appointment but isn’t it my right to have someone watching over everything that knows me and knows my history?

My next point is social care. Not a lot to say really as there isn’t any in my area and as you are making it one of your targets i hope you will support me to set up something in this area. Young carer deserve a place where they can go. It’s not only that my youngest child has been terribly unhappy about going into school or beaver scouts because he has attachment issues with being stuck in the house a lot . I have been asking for support for him as he would benefit from group activities to build up his confidence and social skills.

The next thing ( i bet you are wondering when I’m going to stop , nearly there)equipment. I was stuck in . Couldn’t leave the house. Contrary to belief you don’t grow wings when you drink red bull !🀣 It’s like stupid to say it but you need someone to teach you to be disabled.

You don’t have a clue what to do. I’ve had to use a camping toilet in my hallway for 7 years . It’s been the best buy ever that toilet and we have definitely had our money’s worth out of it.

So i bought my own second hand scooters but as they died i asked the doctor if he could get one because mortgage to pay and all that. I was expecting an appointment to go to the wheelchair place to discuss my needs. It’s not it’s one style for all! It may as well of been an extra seat because it was useless as a wheelchair in this area. I told them and they did kindly replace it with a more action one but this area is horrendous for pot holes and kerbs that are supposed to be lowered but aren’t. How am i supposed to enjoy going out with my family? I do have an electric wheelchair i bought myself second hand even that isn’t good enough for this area . I can’t be independent. I can’t do what i want to do . I’m fustrated. Do you know how it feels to really really want to do something but you can’t because your chair won’t go that way. Mum’s let us down again .

On a positive note we have just got enhanced community support workers in this area and it’s the first social care I’ve had which has been priceless.

I’ve worked out a way to exercise with my ventilator on so I’m trying to strengthen my arms up .

The occupational therapists came around and hopefully I’m going to get ground floor bedroom and toilet hallelujah. The kids can have friends around.

It may be jumbled, there may be typos, punctuation, grammar (my brain all jumpy even with screen letters on huge I’m struggling) etc anyone feel free to edit and send back. But it is from the heart and it’s real so i hope you read this letter and take it on board. I was a strong person and this has broken me . More importantly it’s stolen my childrens’ childhoods because I’ve failed them. Times ticking they’ve lost mostly 7 years……………

Update 12.4.18

Well Mr Hunt I Just wanted to update you about the wheelchair situation. I have since had 2 accidents

Panicked…..

Ok not quite sure how you people are taking me but the new Twitter page and Blog although set up with the primary target of reaching out to others and trying to raise awareness for disabilities and activities in the community; it’s also intended to help me on my journey .

I still don’t know who i am . Circumstances meant that i became a very strong individual person at aged 17. It was scary then but i bloody loved it. Bit by bit i felt like my body absorbed the worlds energy and sometimes naively felt untouchable. Luckily appart from a couple of battle scars from coming off a push bike oh yes and nearly drowning once from getting stuck in the mud whilst cleaning the barnacles off the hull from a RIB , I’ve got lot’s of brilliant memories.

I’d learnt not to lean on anyone a bit like me Tarzan and Jane.

Fast forward to now………………………………………..

From my other blog you’ll already read that i feel lost . That after becoming ill and having someone do everything for you is so hard and demoralizing. People talk to you differently. I couldn’t be the mum i was, the wife i was the person i was it was like i didn’t know who the “fudge” i was anymore. I didn’t recognise more to the point i detested who I’d become .

This is still a journey for me because you can’t slip back into your old pair of shoes. You can find some new ones that are comfortable but a different style.

So back to the title ‘Panicked ‘. You all know I’ve been going to the gym for the last 3 weeks. Everyday I’ve been slogging away and loving it . I love exercise and i think it’s getting that control thing back. I always start my training by working on the handcycle unassisted no breathing machine to see if my lungs have improved any. Then move to my assisted (with my ventilator on) which are coming on in leaps and bounds by the way 1 1/2hrs today . The personal trainer who is helping me is going above and beyond to support me. It wasn’t easy to go back to the gym from what i was to what i am but because i know him and trust him i did it.

The problem is the Horrible Man is being selfish next week and taking a week off for annual leave. How bloody rude ! How can he do this to me , i need him 😭.(Only Joking). I mean i do just get on with it now in the gym but it’s just as a just in case case am i being silly ?.

So this 43 year old a mere shadow of her former 17 year old self cried when he told me today. How stupid. I hate myself for it too because it’s not what i want to be like . All night I’ve had anxiety. I really don’t want to not go and i owe it to my kids. I’m going to try but i am worked up .