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 ๐Ÿ˜๐Ÿ˜. 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

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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