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

About Me

About Me

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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x

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