In July 2017 I stayed in respite for 2 weeks, I had a great time at Waterside House, Netley Southampton. I visited some great places like London Zoo, RHS Wisley, Spinnaker Tower Portsmouth, Isles Wight etc. You get great care whilst at Waterside House and the volunteers make it a special week. The Summer Youth week is always great fun, on the last full day I advise you do not wear your best clothes. You have a water and powder paint fight where you get covered in paint and water, you have so much fun!
I was being picked up by my carer Angie when I started to feel funny, next thing I remember was being put in the recovery position on a bed. Ambulance was called, they checked everything, all ok. Because I was 3 hours from home and Angie was OK driving me they decided I would be OK to go home. When we got home Angie decided to call an Ambulance again as I was still not feeling right.
Once again I was admitted to Hospital with a chest infection, I was in Hospital for 7 days. I had no strength when I got home, no one could understand me. I needed to build my strength up again. I would get the Carers to assist with my arm exercises every day like moving up down, out to the side. I do them quite fast, I find it helps with the signals to the Muscles, I do 10 on each arm, I also started going back to the gym with the MEDImotion Bike, twice a week.
In Sept 2017 I started to get some strength back after a few days, I was able to drink my drinks. One morning I had to press my life line, I was getting pressure pain in the bladder area, a temporary Catheter had been fitted, so my parents called 111, I was admitted to hospital again with a bladder infection. I had only been home from Hospital a week, this was starting to effect my mood. I was in hospital for 10 days, I’ll get my own permanent bed, the way I am going!
My mood was very low when I got home from Hospital, never felt like this before, struggling to find my Mojo. A few weeks later I was lying in bed, I thought I need to use the hand bike with no assistance from the machine. I found it hard, I could only do one and a half turns but I loved it, it made me smile and laugh all the time, yes I had found my Mojo 😄.
It had only been two weeks since I left Hospital
that I got my Mojo back but then I started to feel all weak. I could not see my
TV and communication device again, I knew it was some kind of infection so my
Carer called my mum, who called an ambulance, I was admitted to hospital.
I was confirmed as having a chest infection again so they made me Nil By Mouth, so they inserted (NG) Naso Gastric tube up my nose, so I could get some nutrition. It took 4 goes but on the 4th go they had to stop. You need to swallow when the tube is being pushed down your throat, this I struggled with as I had trouble swallowing.
Finally they used an X-ray to help insert the tube up my nose and into my stomach, why they did not use this procedure in the first place, could have saved me a lot off distress, they decided to give me a Peg, for my food and drink.
I had a Video X-ray, to see if food and drink was going into my Lungs, only some of the drink was.
I was told not to drink as fluid was going into my lungs, bought a smile to my face as I never liked thickened fluid but hopefully I would able to have some yogurt.
The Speech Therapist said I need to be Percutaneous endoscopic gastrostomy (PEG) Feed, so I would be getting all my food, fluids and Medications through the (PEG). I did not want my food going through my (PEG) as I enjoyed my food but the Doctor said I run the risk of food going into my Lungs, thought it best to get my food through the (PEG).
There were complications when they tried fitting the (PEG), so they stopped. A Radiologically Inserted Gastrostomy(RIG) was fitted instead a few days later.
The difference between a (PEG) and a (RIG), is that a (PEG) has a disc stopping the tube from moving out of the stomach, whereas a (RIG) has a balloon stopping the tube slipping out of Stomach.I was finally discharged from Hospital 23 days later, now getting my food and drink through the (JIG).
The next day after leaving hospital I went to the Gym, I used Medimotion bike for my legs and arms. I used no assistance for my arms, I was able to do 3 rotations of hand bike, not bad place to start. I did the normal arm weights like Bicep, Triceps, and Shoulders. My Sports Therapist tried giving me Sports Therapy twice a week, mainly working my arms.
I do exercises to strengthen the tongue base, this is to stop residue falling into the airway. I also do Speech therapy exercises, I find reading out loud helps, from this I only want small improvement.
I do breathing exercises, make ha sounds and OE as loud as I can, I do these exercises 3 times a day.
I am doing exercises every two weeks with my carer, we work my arms, legs and my Core. My carer is starting to see a difference in my strength, now I am getting the right Nutrition through my (RIG) and what my Sports Therapist friend is helping me with is helping me to get stronger.
My (MS) journey is like that Chumbawamba song Tubthuming (I GET KNOCKED DOWN, BUT I GET UP AGAIN,YOU WILL NEVER KEEP ME DOWN)
I was confirmed as having a chest infection again so they made me Nil By Mouth, so they inserted (NG) Naso Gastric tube up my nose, so I could get some nutrition. It took 4 goes but on the 4th go they had to stop. You need to swallow when the tube is being pushed down your throat, this I struggled with as I had trouble swallowing.
Finally they used an X-ray to help insert the tube up my nose and into my stomach, why they did not use this procedure in the first place, could have saved me a lot off distress, they decided to give me a Peg, for my food and drink.
I had a Video X-ray, to see if food and drink was going into my Lungs, only some of the drink was.
I was told not to drink as fluid was going into my lungs, bought a smile to my face as I never liked thickened fluid but hopefully I would able to have some yogurt.
The Speech Therapist said I need to be Percutaneous endoscopic gastrostomy (PEG) Feed, so I would be getting all my food, fluids and Medications through the (PEG). I did not want my food going through my (PEG) as I enjoyed my food but the Doctor said I run the risk of food going into my Lungs, thought it best to get my food through the (PEG).
There were complications when they tried fitting the (PEG), so they stopped. A Radiologically Inserted Gastrostomy(RIG) was fitted instead a few days later.
The difference between a (PEG) and a (RIG), is that a (PEG) has a disc stopping the tube from moving out of the stomach, whereas a (RIG) has a balloon stopping the tube slipping out of Stomach.I was finally discharged from Hospital 23 days later, now getting my food and drink through the (JIG).
The next day after leaving hospital I went to the Gym, I used Medimotion bike for my legs and arms. I used no assistance for my arms, I was able to do 3 rotations of hand bike, not bad place to start. I did the normal arm weights like Bicep, Triceps, and Shoulders. My Sports Therapist tried giving me Sports Therapy twice a week, mainly working my arms.
I do exercises to strengthen the tongue base, this is to stop residue falling into the airway. I also do Speech therapy exercises, I find reading out loud helps, from this I only want small improvement.
I do breathing exercises, make ha sounds and OE as loud as I can, I do these exercises 3 times a day.
I am doing exercises every two weeks with my carer, we work my arms, legs and my Core. My carer is starting to see a difference in my strength, now I am getting the right Nutrition through my (RIG) and what my Sports Therapist friend is helping me with is helping me to get stronger.
My (MS) journey is like that Chumbawamba song Tubthuming (I GET KNOCKED DOWN, BUT I GET UP AGAIN,YOU WILL NEVER KEEP ME DOWN)
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