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How my Multiple Sclerosis is affecting me now today!

My day-to-day existence
Not a lot is different each day, it’s the same each week, the only way I know what day it is is when I take my first pill from my pill pot. My daily routine starts when my husband wakes up at 7.30am and goes into the wet room (thanks to the council for the disability grant to converting our bathroom into a wet room) anyway when my husband has finished he then starts by emptying my night bag(which is attached to my SPC which I disconnect) and empty’s for me, then raises the electric bed and helps me up and literally arm to arm pulls me up and helps me to my wheelchair, he then wheels me to the bathroom and again arm to arm pulls me up and put me on the toilet so I can clean my teeth, wash, use my Peristeen system and then self evacuate my bowls(which is not easy) wash and dry, and call my husband to get me back to the bedroom to dress. So after he recovers me from the bathroom and puts me on the bed he dresses me, from head to toe, he then puts me back on the wheelchair and takes me to the top of the stairs, we then have the scariest part transferring me from the wheelchair at the top of the stairs to the stair lift, he stands on the top stair and arm to arm pulls me up and twists me round and sits me on the stair lift, this is where I have fallen a few times… But thank God! not down the stairs. Husband puts wheelchair away round the side of the stairs and I go down stair on my stair lift. At the bottom Hubby transfers me arm by arm to my electric wheelchair which is parked at the bottom of the stair from the night before, I under my own stream get to my chair and Hubby once again transfers me to my electric chair where I sit for about 12-14 hours until I go to bed. So that’s my day unless I have a hospital appointment that seems the only reason I go out these days. From 10pm to 7.30-8am I’m in bed lying down.

I was diagnosed in July 2013 with Secondary Progressive Multiple Sclerosis; at the time I was working driving and holding down a responsible Customer Service Management position. By October of that year I retired due to ill Health, at which point my health did start to deteriorate fairly rapidly…to the point where I am today. I receive ESA and the highest level of PPI. I was recently scored 8.00 on the (EDSS) Disability Status Scale, which is pretty high 10.00 is classed as Death due to MS so only 2 to go.

Anyway what and how my MS affects me, from top to toes.

My brain is a bit fussy, I have more lesions now than first discovered but not prepared to have another MRI to confirm as I am also claustrophobic. This affects my short-term memory and my ability to string a sentence together. I also need my food cut into small size pieces to swallow, or they get stuck going down. So going out for a meal is embarrassing. I have Lesions on my Spine which effect my movements very frustrating. I need help dressing and undressing as well as everything else for that matter,but can still wash and shower if helped into the shower chair, I need drying though. I have what they call MS hug it’s when you can’t move and sit all day in a chair, you get a constant pain around you middle like its your in very thigh clothes around your middle. I have no muscle control in my bladder so now have a SPC Suprapubic Catheter and waiting for a Stoma to be fitted as my bowl has no working muscles either so having to use a (peristeen system) to flush my bowls everyday which is very difficult.

My legs are a bit useless can’t stand or walk for that matter, but they are always freezing. I take 30 tables a day plus 6 vitamins and minerals, drink 6 x 500ml water a day… pain is a big problem but I deal with it the best I can, fatigue is the other big problem I can sleep 3 to 4 hours a day.

Expanded Disability Status Scale (EDSS Scale from 0.0: – 10.0:

0.0: meaning: Normal Neurological Exam

10.0: meaning: Death due to MS

The clinical meaning of each possible result is the following

FS : Functional Systems (John F Kutzke defines functional systems as follows)

: pyramidal : cerebellar : brainstem : sensory

: bowel and bladder : visual : cerebral

: other

0.0: Normal Neurological Exam

1.0: No disability, minimal signs in 1 FS

1.5: No disability, minimal signs in more than 1 FS

2.0: Minimal disability in 1 FS

2.5: Mild disability in 1 or Minimal disability in 2 FS

3.0: Moderate disability in 1 FS or mild disability in 3 – 4 FS, though fully ambulatory

3.5: Fully ambulatory but with moderate disability in 1 FS and mild disability in 1 or 2 FS; or moderate disability in 2 FS; or mild disability in 5 FS

4.0: Fully ambulatory without aid, up and about 12hrs a day despite relatively severe disability. Able to walk without aid 500 meters

4.5: Fully ambulatory without aid, up and about much of day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Relatively severe disability Able to walk without aid 300 meters

5.0: Ambulatory without aid for about 200 meters. Disability impairs full daily activities

5.5: Ambulatory for 100 meters, disability precludes full daily activities

6.0: Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk 100 meters with or without resting

6.5: Constant bilateral support (cane, crutch or braces) required to walk 20 meters without resting

7.0: Unable to walk beyond 5 meters even with aid, essentially restricted to wheelchair, wheels self, transfers alone; active in wheelchair about 12 hours a day

7.5: Unable to take more than a few steps, restricted to wheelchair, may need aid to transfer; wheels self, but may require motorized chair for full day’s activities

8.0: Essentially restricted to bed, chair, or wheelchair, but may be out of bed much of day; retains self care functions, generally effective use of arms

8.5: Essentially restricted to bed much of day, some effective use of arms, retains some self care functions

9.0: Helpless bed patient can communicate and eat

9.5: Unable to communicate effectively or eat/swallow

10.0: Death due to MS

My current situation is quite a lot like this MS take on a famous nursery rhyme. But what can one do other than get on with it. 🙁 All in all a little sad and sorry at this stage but… Trying to be positive. AL X