Washi tape and cupcakes

Ok, I confess that I may have an addiction to washi tape. It's so versatile and looks very pretty. I spent ages wrapping up my Christmas presents with it. I also made some decorations out of clay to add something extra to finish it off x

I really enjoy baking. When I went to Center Parcs in November, I learnt how to decorate cupcakes. I thought they looked so good that I decided to make some to give as Christmas presents. I would rather do this than buy something that someone doesn't like. So here they are x 

Christmas decorations and cards

i've been happily making christmas decorations this year. I love to work in felt as it's so versatile.

I also made some christmas cards. I wanted to make loads but life gets in the way.

If i don't blog before christmas. I hope you have a lovely time

Hayley x 

Sometimes christmas isn't always a happy occasion

I'm laying in bed trying not to forget tomorrow. Three years ago my dad died of a brain tumour. He would of been 60 tomorrow.

Although i love this time of year, i also hate it. I moved house on the 23rd of December and dad died on the 24th. I remember the phonecall from my sister in law at 3pm to say he had passed away. He only survived 10 months from diagnosis. He could of had a good 3 months if he didn't have the treatment. But he didn't and was gone months before he died.

This time of year brings back sad memories of his illness. We didn't have a great relationship. My parents divorced when i was a baby and remarried. I call my stepdad dad because he is. When dad was ill in hospital he refused to see me, because he had issues with my mum.

It was extremely hard but one thing he told me before he died was that he loved me and was proud of me.That's what i was waiting to hear for 27 years.

So i will raise my glass to you dad and wish you a very happy 60th birthday x

Learning Calligraphy with ThePostmansKnock

I've been interested in calligraphy for a while but never got round to learning it. So thanks to Lindsey from The PostmansKnock i am now learning. She has some fantastic tutorials which are so easy to understand. I love to learn in pictures and this is exactly what she does. Step by step guides with fab pictures.

Here is my first attempt. I made a tag and a birthday card for my mum. Hope you like them x

I also did an envelope for a friend x 

I have been a lazy blogger

i've wanted to update my blog for ages as i have so many things to show you. However i just didn't know where to start and the longer i left it, the harder it got.

But here. I am and will start with an october update.

Lets talk halloween. I know, i know, it was a while ago now. It was my nephews 4th birthday and he had a halloween party. I have never dressed up for halloween but mum and dad wanted to. So here is me dressed as a midnight fairy/witch.

Next i had my ceiling hoist installed. It has been amazing and has cut down on the amount of carers that i need. Sorry about the bad picture x

Then my physio managed to get hold of a standing frame for me. I didn't think she would as they are quite rare but she was lucky or rather i was. 

It is huge and am waiting for it to be adapted for me, then i can use it.

Thanks for reading. Can't wait to do some craft posts x 

Update and Reindeers

Good afternoon.

I've been home from rehab for about 2 weeks. I have been busy with lots of appointments as per usual but i've had some good news.

Ive realised that although i hoped to get a lot out of rehab, i didn't really learn that much. We did transfers but only from there physio beds and they put them up and down for me. Sadly it doesn't reflect the real world where nothing is level.

Now to the good news

I am going to get a ceiling hoist in my bedroom so i can get myself in and out of bed. This will cut down on the amount of carers i need. Hoorah. Also getting a knew shower chair which goes over the toilet. It will make a huge difference. And the biggest is I'm getting a new car that i can drive my wheelchair into. Which means no more transfers. Sooo excited.

.Anyway enough about me, here are some reindeers. Sorry they are not real.

There were initially wooden so i painted and covered them. Of course they had to have bells on x 

Rehab day um i've forgotten

So it is now my third week in rehab. To be honest there were times that i was going to be sent home. I was determined to finish my journey though.

Friday afternoon i spent in A&E as my feeding tube was bleeding. It was put down to trauma. Instead of using patient transport to get home, i asked the hospital to book a taxi for me. They tried 8 taxi firms in my area and none would take me and my electric wheelchair. Finally i asked patient transport to take me home. I finally got home at about 10pm.

I was up at 4.30am yesterday ready to be picked up by transport. It was my favourite man and i interrogated him all the way. Turns out hes single 😍😍. He might pick me up on Friday (love is in the air haha)

In the morning i met with my o.t. She and my physio have confused me the whole time. One minute i need to learn to transfer and the next i need a more supportive wheelchair. So i jokingly asked her if i could do standing and finally she explained in simple terms how its not possible yet as i need to get stronger sitting. Phew we are now on the same page.

Next i saw the phycologist. I have been feeling very low all weekend and wanted to learn some techniques to tackle my spiral of emotions. We discussed why i felt like that. Partly due to my lack of food and water due to my peg problems.

We came up with a couple of solutions. The first was to write down my thoughts and then the facts etc. this helps put things into perspective. The second was to imagine the words in a ball out side of your head and then imagine burning it.

Today i did had a craft session. I really miss it, so i enjoyed having the time to do something. Here is what i made. It was free from a magazine but kept me entertained for a while.

Ive learnt a lot  about myself since being here. Mostly I've learnt not to be so mad at myself. X

Rehab update and feeling worthless

I haven't updated my rehab journey as i have been way to exhausted. After dragging myself through a few more days , the team decided to cut out some sessions in my timetable as it was getting to much for me.

Last week was tough as i had a problem with my feeding tube and had to cut my calories in half. This made me more exhausted and emotional.

In my sessions with the o.t and physio we are doing transfers from chair to bed. Its hard as you will get one good day out of me and then my body just won't perform. I see other people on the course getting stronger and its making me feel like I'm not working hard enough.

My physio and o.t are still not on the same page. One minute i should get a new wheelchair as mine isn't supportive enough, the next minute its too supportive and i need better posture. I need a car i can drive my wheelchair into but then I'm supposed to get stronger with my transfers. I'm so utterly confused.

My o.t wrote in my notes that I'm  resigned to life in a wheelchair and that i may not want to stand at all. I think she has misunderstood me. My walking declined over the years. It put a lot of stress on my joints and i ended up only being able to walk a few steps. I never gave up on walking and could of put myself in a chair many years ago. Eventually i lost the ability to walk and have again fought hard to regain some back but to no avail.

What people don't realise is when you have a chronic illness, walking is not going to make the symptoms go away. In some ways it will make life easier but it will also make it harder. I have more energy from a chair than walking. However one day maybe i will walk again but its not going to happen in 3 weeks.

I have other issues going on such as my gastroparesis. My feeding tube is still pretty new and my stomach has flared up. Without nutrition my body doesn't work. Simples.

Ive decided to speak to her on Monday but not sure how to word it.

I have one more week left at rehab and have made some good friends. I have learnt a few things about pacing and exercise but would like to learn more assertiveness.

Right now i'm feeling terribly low, angry with myself and an utter failure. Hopefully tomorrow will be better day x

Rehab day 6

i have been awake since 4.30am and arrived at stanmore at 8am. I feel asleep in the car. Hope i didn't snore.

Im the first one here and haven't got my first session until 10am.

Weekend review

My first session was to go over our goals that we set last week. I felt really lazy as everyone else managed to do fun things at the weekend and i just slept. My goals were : to perform physio throughout the day, to complete activity diary, to pace washing and dressing, to order some aids, to pace tidying craft room and to use post it notes to prompt good posture.

I achieved most of my goals but sadly didn't get into my craft room as i was to exhausted.

Anatomy and healing

In this session we went over how the bones, muscles ligaments and tendons worked and the effects ehlers danlos syndrome has on them. To be honest it was abit boring.

I had a break between 11.30am and 1pm so thought i would get some sleep. It was not to be as the other girls have endless energy so was very noisy even with earplugs.

Goal setting

We discussed how goal setting can help you ficus and feel like you've achieved something. I found this session quite useful.


I was then off to see the o.t. She had a look at what i did over the weekend and then we colour coded my activities. She then asked if i slept because i wanted to get out of dealing with life or something along those lines. I was deeply offended as in the early stages of my illness this was suggested, but now i have alot of medical letter that explain my conditions and symptoms. Ive tried not sleeping in the day and i end up even more unwell.

The course is centred around pain management and theres alot of people in here who don't do anything with there days and will just stay in bed. I do not accept being put into the same category. Ive fought hard to get to the level I'm at and now i'm questioning myself.

After a tearful session i went onto physio. She doesn't want me using my wheelchair headrest so she flipped it back. I feel like everything I've fought so hard for is being taken away. I feel like saying ' here take my chair, take my slide board, take everything as I've had enough.

Day 3 in rehab

Woke up this morning feeling dead. There was noone  to help me out of bed , so i dragged myself onto my chair but i couldn't sit up so was half on chair and half on the bed. Took me ages to sit up. I then went to the bathroom and attempted to get dressed. When I'm having a bad day i literally cannot move. Finally found someone to put my trousers and shoes on. I confess that i still have my socks on from yesterday as i couldn't change them. I rushed to have abit  of breakfast, take meds and flush my feeding tube.

Tai Chi

The first class was tai chi. I didn't know what to expect from the class. I was thinking it was some form of karate. I hoped so anyway.
My hopes were dashed in an instant. We all sat around in a circle while a lady said we need to close our eyes and visualise things. We then had to move our arms and legs. Brilliant in theory but i have no sense of where my limbs are in space. If i close my eyes my arms could end up anywhere.

My eyes had to stay open so i didn't really get much out if it. I was quite embarrassed as my feeding pump does a whirling sound every few minutes. Not good in a quiet room.
The lady used such words as ' effortless posture' and you will be 'revised and energised'. I thought this meant i was going to be like a duracell bunny, but i was more like a slug.

I didn't have another session for 45mins but i waited up in physio as my chair isn't charging well so i needed all the power i could get.

 Occupational therapy

Next was to see my o.t. We went straight into the bathroom. I immediately saw the bath and thought this was my kind of therapy, a long soak in the tub. It was not to be.

We talked about getting up, washed and dressed and how i'm managing.

I brought up that i was struggling with the lack of care on the wards and she is going to talk to the ward staff about it.

We came up with some solutions for my problems. Aids such as a long handled sponge, a thing that helps you to put your socks on and different baskets for dirty clothes. Also to put washing on the worktop instead of the floor to save bending.

 We then talked about my carers and how they need to do more work but also slow down and give me time in between showering and dressing. They tend to lug me out of bed and are only there about 30 mins instead of an hour.
After discussing all this my o.t said i looked very tired and we should finish early.

 Sadly no rest in between as i was off to a session in relaxation

 Intro to relaxation

 By this point i was exhausted. I was sort of listening but only caught little bits. My mind wondered. Here are my thoughts while i was trying to listen .

No idea what it is about, is it bed time yet.
I'm freezing cold.
I wonder if i'm going to get a chance to charge my chair
Need matchsticks to hold my eyes open but its a non smoking building so could be difficult.



 The lady said something about a person getting bitten by a snake but don't worry relaxation will help.
Picture of a leopard asleep on a tree, very jealous of mr leopard
I've got nothing left to give. Help

The lady then went onto talk about laughter therapy and my first thoughts were ' i don't think she would appreciate it if i starting laughing.





I then thought it might not be appropriate to laugh when your at a funeral. Yes i have random thoughts.

Next stop is an intro to assertiveness


We touched on subjects such as being aggressive, passive and assertive. I don't think theres much to say on this subject but i did wish real life was like sky tv where you can stop and rewind.




Physio

Yes i am still alive just. Physio was only half hour and something she said made me burst into tears. She asked me what i was upset about but i knew i would come across as defensive (see im learning ) if i told her she had upset me, so i decided to not tell her and think it over. We then went off to the sports centre and i realised i was rubbish at basketball, tabletennis and badminton.

Im now in bed after a very long day. Lets see what tomorrow brings x

Day 2 in Rehab

First i apologise for the very long post


Its 7.32am and i am waiting to see if anyone can help me get up. They don't have carers as such here and we are not allowed to ring the call bell unless it's an emergency, I wonder if needing a wee is classed as an emergency?

I feel awful today after a very long day yesterday. I'm sure i will be alright when i take me meds. I might transform from someone out of the night of the living dead to an actual human. Mmm we can only hope.

Physio 

My first session started at 9am. It was a class on stretching. There were a few of us there today and we just did gentle movements until about 9.30am. Next i went to see the physio. She had me lay on the bed and tested my movement and muscle strength. She came to the conclusion that i don't have much muscle or coordination hence why i can't stand up. We then discussed my leg braces and she said they weren't much help as you can't walk around in them forever. I think i used up all energy just carrying them up there.

Next she came up with an idea. Try some different braces. So she brought in some foam ones and i turned into the michelin man. We tried to stand on the parallel bars but i was like a raggy doll and flopped back into my chair. She gave me a few exercises to do and tomorrow we are going to the gym, hoorah. Apparently not many people get to go as there not used to the exercise. I love the gym and maybe the men in it haha. Its an all girl ward here so it would be nice to have a bit of eye candy.

Anyway after being tortured. I mean having controlled exercise, i had to go and meet a lady. I say lady as I'm confused as to what she does, i think shes a therapy technician. Who knows. The first thing i notice in her hand are colouring sheets. Does she not realise that I'm allergic to colouring, the black and white makes my head spin and my hair stand on end. After colouring in two flowers i said i can't cope.In between that i had to work on my posture and sit up straight for 1 minute at a time.

We decided colouring wasn't for me and went onto card making. Sadly they don't have as much craft stuff as me. Think i need to donate some. Heres the card i made. I think i did a pretty good job considering.

I'm now free until 3pm.

I managed to get some sleep and am now off to see the o.t

Occupational therapy

I've come across a few o.ts in the time i've been ill. I always thought they just dealt with equipment but they do much more.


Other subjects we touched on were assertiveness and whether i go on forums. She said i'm different to the other girls as they spend alot of time on them. I admit i did in the early days as i was new to the condition but after 12 years it's no longer the centre of my life. We set a few goals to discuss next time i see her.

Pain talk

We talked about acute pain vs chronic pain, fear of pain can create pain and that everyone interprets pain differently. It helped me to understand others more than myself. Because you can't see pain in other people it's very easy to say ' get off your arse and do something'. But often this isn't the case. Pain is entangled with so many different issues emotions and environmental factors.I now have more of an understanding of the issues pain can cause. Another day over and now i'm going to relax and catch up on some tv. X

Rehab day 1

Today i start a 3 week rehab programme in london. Hopefully it will help me learn new skills on how to cope with my condition. I will try to update everyday so i don't forget what I've done

Day 1 

I got up about 6am. I was even awake before the birds. It took a couple of hours to get here and we were a bit late as got stuck in traffic. How dare people be on the roads haha.

When we arrived a volunteer showed me to my bed. I was just starting to unpack when i got ambushed by people. It was like a mosquito swarm. First the nurse to fill in paperwork. Then the doctor. Between these two came the menu lady, oh and the pharmacist. It was then off to my first session. Just trying to remember what it was. Welcome meeting i think. Then straight after it was something to do with pain management. I was late as i had to flush my tube and i didn't even get time for a tinkle. I felt very lonely in the group as the other girls knew each other.

Next was lunch and i met some nice ladies from my ward. After lunch it was physio and o.t. This was basically just to introduce themselves.

After that was a class on pacing. I don't understand pacing. I would rather get everything done. I couldn't understand how you pace doing the watching, do you just put one  thing in the wash then rest and out another thing. It would be a very long day if that was the case. The o.t laughed and said thats not how its done. Damn that means i cant get away with just doing that all day.

I managed to get a rest in between but i couldn't sleep as my bed is right by the nurses desk and the doors. I was getting more and more exhausted, i wanted to go home. I missed it terribly. After spending two months in hospital i didn't want to go to another one.

After i rang mum and had a good cry i went to dinner. It was quite nice to chat to the other ladies. Alot of them are just here for a week whereas I'm here for 3.

I then decided to have a warm shower but sadly it was cold and then got into bed. I was terrified of sleeping incase i snored. I would be so embarrassed. But sleep got me in the end.

Day 1 over and i survived x

New home card

I haven't really got much to say today. Been busy with appointments again. Had 7 this week. Next week i go into rehab for 3 weeks. Excited but nervous.

Anyway heres a new home card that i drew for a friend. Pretty pleased with it x

Play time with new stamps

Before i went into hospital i treated myself to some new stamps. They are by Avery Elle and i fell in love with them.

Here are some cards that i made

I'm Home

I finally came home from hospital two weeks ago. However it hadn't been plain sailing. The day after i came home my feeding tube got blocked. I couldn't unblock it  myself so had to go to a&e. 

I knew as soon as i git in there that the doctor didn't know anything about tubes. He looked puzzled and was umming and arhhing. So i said to find someone that does know. He then gets a colleague of his to have a look.He was pretty useless aswell and wanted to out a new tube in himself. Bearing in mind it goes into my intestine i wasn't going to let him pull it out. 

Then a nurse came in with a big trolley and said 'one of these should fit'. I looked and the trolley and it was full of catheters. Mum and me just burst out laughing and thought where the heck are they going to stick that hehe. Turns out nurse was in the wrong room. Phew

I had the option to stay overnight or go home and come back. My tube is my lifeline but i said i would risk being without fluid until i got a new tube fitted the next day.

New tube is working brilliantly but have been very busy with appointments. 

I thought i would show you a pic of my feed that i change everynight. 

My feed, pump, syringe and giving set. I do love the colour haha.

I have also made some cards but i will upload those in another post.

Oh i forgot. To say happy September everyone 

Hayley x

My new toy. Silhouette cameo

While in hospital i treated myself to a new toy. A very expensive new toy. The silhouette cameo. 

I was so excited to get it out of the box that i forgot to plug it in. I then forgot to put the blade it for it to cut. Doh.

Anyway here are some cards i made. The designs are from the silhouette design store x 

Hospital update and feeling inspired

Yes i am still here. I have just celebrated my 7th week anniversary haha.

Just to recap over the last couple of weeks. I had my pegj fitted which feeds into my intestine. I started on my new feed as well as my tpn. That was alot of food haha. 

It hasn't been an easy ride. Hence why i'm still here. The central line in my neck had to come out so i had to have a picc line put in my arm to keep getting the tpn. My new tube got blocked so i had to have it replaced and have been struggling with the new food. However i think i have now turned a corner and am going home on monday. yay.


The last couple of days i've been inspired. I guess this is a sign of me getting better. I am in the process of updating my blog layout.

I was also up at 6.30 am and started doodling. I think i may have gone mad. 

Thankyou to the people who have sent me cards. I love receiving them. They really cheer me up. I will thankyou personally when i get home .

Hayley x

Asbo Grannies

So lets talk about asbo grannies. The species isn't as rare as you may think. The reason we dont come across them very much is because they are often locked in care home. However sometimes they escape into the community. This is where the problems start.

The characteristics to look out for are: They will show the elderly lady in the next bed how her table works, how it moves and probably how its build.
She will then proceed to attack the ladys dinner. Threatening to feed her. Maybe even tell her what ingredients are in it.

Now this is where you need to be afraid and maybe get a restraining order. Don't let her see you have a drip. The machine beep scares her like a wild beast. She will leap into action and try and turn the machine off. Even fiddle with the drip bag if shes feeling extra naughty.

Lastly
Make sure windows are out of reach. Its like a game to these grannies. You open them. She closes them. And on the game will go.
So tonight I am sleeping with a taser gun under my pillow for mine and my drips safety x

Paper pants and surgery

I'm high on morphine at the moment so i apologise if this post doesn't make any sense.

Well I'm still in hospital. On Sunday it was my birthday and look what i woke up to.

The night staff had made me bunting out of gloves hehe. Was a lovely thing to do. Alot of my family and friends came to visit and i hope to do something when i get out.

I've also realised that i may have most of the hospital pumps on my iv pole. I'm usually connected to 3 lines at once. I'm quite used to it now. Bit of a nightmare to move it when I'm in my wheelchair though.

Yesterday i finally went for my op to fit my peg. It went OK but woke up in agony. They had to cut me open, find my stomach and fit my peg next to the incision. I have bee nil by mouth for 48 hours as i need to let my stomach to heal. The next step is to extend my tube into my bowel via endoscopy. This was the original plan and thought i would be out within a week. It can't be done yet as i need at least a week to heal. I also cannot use my new peg until then. I'm quite happy staying in tpn at the mo.

It has taken a while to get my pain under control. I didn't sleep last night as i cannot sleep on either side or my back and i was in agony. Luckily morphine and other painkillers have come to the rescue.  

Oh and i got to wear sexy paper pants. However i think they look better as a hat

Off now with the fairies x

The crazy ward roommates

Let me tell you a little about the people on my ward.

We will start with lady no1. She looks like she is off the TV show benidorm.Very old and moans. Her makeup is the colour of mud and all she needs is a fag in her mouth and a mobility scooter.

Lady no2 - Has a learning disability, nice enough but asks the same questions over and over again. Nice enough but picks her nose alot as the hospital doesn't give us enough protein.

Lady no3- Well what can i say other than I'm traumatised.She pulls off her stoma bag and shits everywhere. She also loves to be naked. I do not want to see her fiddling with her fanny thank you. She also seems to get a cooked breakfast everyday. No fair.

Lady no4 - About 100 and every other word is an ooh ooh as if shes in pain. Shits and wees and doesn't have a clue why she is here.

Lady no 5 - has swallowed an offensive language dictionary and wants to go back to her local place. I'm praying alot that she does

oh and then theres me. Stuck in bed as theres not enough staff to hoist me out because they are filling the laundry up with sheets and shit.

Thinking of sending myself off the to morgue to get some peace. Wonder if it also smells better

From a very sleep deprived and grumpy Hayley x

Can't believe it's been so long since i updated my blog. To be honest I'm not sure if anyone actually reads my ramblings.

Apologies that this maybe a very long post. Since the last time i updated things have got alot worse.

I got the results for my stomach tests from London. It shows i have very severe gastroparesis. This is where the muscles in the stomach don't work very well to empty it.It has led me to lose alot of weight as between that and my weak oesophagus, i haven't been able to eat enough to function.

Things got worse when i had my wisdom tooth taken out and was given antibiotics. I haven't been able to eat or drink since. My consultant in London suggested a feeding tube. I tried to survive as long as i could at home but had to be admitted to hospital.

The plan was to insert a peg j tube. This is performed via endoscopy. They put the tube down your throat and make a hole into your stomach. They then extend the tube bypassing the stomach and feed into the intestine.

i had got my head around this idea. However it didn't seem to go to plan! Guess what? The doctor couldn't find my stomach. Weird huh. They think it's sitting in my chest cavity. So the next plan is to do it surgically. They will cut an opening in my abdomen, hopefully find my stomach and put the feeding tube in.

This can't happen until 13th July though as the surgeon is a very busy bunny or man. Day after my birthday boohoo.

So in the mean time i have to be fed via Tpn.

Sorry about the pic. He looks rather constipated hehe. Thanks google.
Anyway i don't know alot about it as i prefer not to. All i know is it is fed through a vein in the neck and has potential complications.

So now i have educated you all with info you will prob never use again haha. Anyway bye for now. Off to watch a film. x

baby card

 A card i made for my new nephew

mad times

Well what can i say. It has been an eventful time to say the least. Think i may have to do this post in bullets points.

Hospital appointment

1. Went back to London to have a gastric emptying study. It involves eating a bowl of porridge with some radioactive stuff in it. Fir me it was a huge bowl and tried very hard to not throw it up. You then have to breath into these bags every 15 minutes for 4 hours. Boring was an understatement. I don't get the results for about a month. I did however get a bit of info about my latest test. The muscles in my oesophagus are weak which is why I'm having trouble swallowing. Got to wait go see the consultant in July.

2. Lets talk benefits

I had to transfer from dla to pip. Filled in the loonnng form and sent all my evidence. Got a letter to say i had to attend a medical. Turn up at the medical and the lady didn't have my name on the list. They don't realise how hard it was to get there. I am mostly bed bound at the moment so it was a huge thing. Anyway someone didn't turn up so i got seen. 

The man didn't have my form, my medical evidence and his computer didn't work. He had to write everything down. Phew glad it was over. Oh no that would be simple. Guess what postman brings me. Yep another letter to go through another medical. I ring up thinking it was a mistake. Sadly it wasn't. They needed more information and i had to go in person, i burst into tears on the phone. 

Managed to get there but couldn't take my electric wheelchair so  had to take my manual one. It has no headrest so was propped up with my transfer board and pillows hehe. The woman in reception was so angry on my behalf that i had to come back. The nurse was lovely and just went through a few things and is recommending i don't be reviewed again as my condition won't change. Just need to wait for the letter now.

3. Intermediate care team

Now what can i say about them other than they are a waste of space. They help to stop people from going in hospital. They turn up at random times. Are very rude. I was terrified of asking for dinner so i just had snacks in my room.Don't communicate in the office even though my physio told them my needs. They hurt me when trying to transfer. Yes i have out a complaint in. Enough said. It has been hell.

However there was a good part. The o.t and physio. I know have a hospital bed and hoist, new showerchair and been referred for a ceiling hoist which will give me more independence . I' ve now put regular carers in place so i can cope without having to go to hospital or get the care team involved.


4. Poorly mum

Mum had a stress test for her heart. They put her on meds and she gas to have an angiogram and stents. I think her valves or arteries are to narrow.

She is really struggling with exhaustion and can't walk very fair. Its like a role reversal. I want to take it all away. The weird thing is i live with feeling very unwell everyday and I'm used to it, but i don't know what advice to give to mum. 

Mum is my primary carer, but dads had to help out. Next week she cant lift or drive but luckily i have carers to take over. 

I just want my mum well again x

Crap couple of weeks

This is where I've been the last couple if weeks.

Yep you've guessed it. Snuggled up in bed. Sadly not by choice.

An evil virus put me out of action again and stole my muscles. I am unable to sit up by myself or transfer into my wheelchair.

Mum has come over everyday to help but i an getting very frustrated. This is not the life i want. There have been some very dark days where i just wanted to die. I even told mum 'just let me die'.

This hasn't been helped with the fact I've had to stop the tablets for my stomach. Ive mentioned in previous posts that the doctors think my stomach isn't working  properly. Last week i had to go to London to have tests done. They put a tube down your nose to test swallowing and one down for 24 hours to test reflux. It was a cruel test. I cried and cried.

Anyway I've had to come off my tablets for 2weeks as i have another test on Friday. This means that  I've been barely able eat or drink which is severely effecting my condition.

On the up side i got to interrogate the patient transport drivers. I love learning about different cultures. Mum nearly told me to shut up as i talked to much hehe. You can tell i don't get out much.

So it was a tough tough week last week. Hope this week is better.

P.s i love seeing my tulips come alive in my front garden. They really make me smile. Oh and i need to put mollycat on a diet as she is getting very fat and other cats are laughing at her 😺😺😺😺

Anyway hope you all have a lovely bank holiday monday

Love from me x

New craft stuff

Near  my village there is an event called craft destash. Its where people sell off the craft things that they don't want anymore. Often there is stamps that have never been used. Its a great way to pic up a bargain.

This is what i brought

All if this cost me about £12. The stamps are all new and my favourite is the ones are from stampin up. Can't wait to play with it all now x

Mothers day sewing

I decided to make a hamper for mothers day. So here is my first attempt at a fabric basket.

'

A liitle pouch i made to put money in.

I filled it with things i won in competitions. Mum was thrilled with it x

Envelope punch board

I've had my envelope punch for for a while but didn't really know how to use it. I thought it was             about time i did, so i went on youtube to find some videos. Here is what i created x

                                            


                                                A thankyou card i made for a friend x

Skillshare

Last year i signed up to some skillshare classes. Its where a professional uses there skills and sets you projects to do. My first one is called 'The first steps of hand lettering - concept to sketch'.

We had to come up with a phrase to hand letter. My phrase is ' I make pretty things all day'. Not partically inventive but i like it to start with.

I wanted the main emphasis to focus on the word pretty and this is my initial designs.

The January blues

Yes it's new year and I have the January blues. I'm going through the motions of woe is me. Then. I read this by a fellow person with ehlers danlos syndrome and other complications.

Stripes For Life My Eds Journey

45 minutes ago · 

Age really really is only a number
About 9 years ago I met a lovely gentleman at the doctors surgery I remember I was in leaving cert at the time and that was b4 I was doing all self care of illness so was attending gp twice a week . This gent was also .attending for medical reasons ,.We have remained firm friends over the years and have gotten closer more so in the past three years myself and my mum often call to him his wife and his daughter who lives next door to them .theres a sparkle In his eyes when he sees me at the door and instant conversation starts even though there is a 50 odd year age gap we are never stuck for a topic of conversation he's the sweetest gentlest man I know .
N today was an extra special treat as his daughter in law was after baking them a Madeira my favourite favourite cake and we all sat in front of the stove eating our slice .
I. May have lost a big number of friends to my illnesses but my gosh I've gained double xxxxxx
‪

This really changed how I felt and I needed to read this to realise that yes life is hard and I have lost a lot since becoming ill. However I have also gained. If I didn't get unwell then I wouldn't have met so many genuine people. People who Really interest me and make to want to carry On and for that I am. Hugely Thank full x