Sunday, 20 September 2015

Sleeping all the time

Friday I finally had my catheter change and ever since I have been asleep. Saturday was sixteen hours and today has been twenty. I am waking for a few minutes and strait back to sleep. Heather has woken me with a cuppa  and then I find it stone cold a couple of hours later. I doubt the catheter change has anything to do with it but I do love a theory. It is now eleven o'clock at night I did watch match of the Day and now I want more sleep but I am refusing to settle down. I am a grown-up and grown-up's don't sleep this much, New born babies are awake more than me. Let's see what tomorrow brings maybe I will even be awake long enough to eat something, all I have had today is a bowl of porridge. Still I might loose some weight.

Botulinum toxin better known as Botox, for treatment of Muscle Spasm ?

My Multiple Sclerosis has wrecked my body but the worst or most obvious symptom is my leg muscles are not working. Well maybe they are working to well as they are permanently in spasm and wont move. They are  contracting to the point the legs will not straighten out fully. If straightened the contract back to their deformed straight. I have written previously about my legs and the spasticity   I suffer. Over the years I have tried all manner of medication to keep my legs working  but nothing has worked. Earlier this year I went to Kings Hospital London to have a test dose for an Intrathecal Baclofen pump. That ended badly and I went like jelly, unable to stand at all I ended up in bed for several weeks until the very thing we were trying to loose returned My Spasticity.
Whilst my spasticity makes my legs behave badly without it I cannot bear any weight or use them in any way. So it looks like I need something to work but just not as well as the Baclofen Pump. I want something not unlike myself, I want something that works badly. A trip to see the MS physio last week resulted in arrangements for injecting Botox into my leg muscles to effectively switch them off. Not all of them just  the naughty ones. I need to be able to transfer and doing it now is a struggle for me and even more so for my wife. Recently my daughter tried getting my legs into the car, she gave up saying dive home with the hanging out the car door. No wonder my wife is exhausted she does all the transfers and is almost twice as old as our daughter.
So if you see a sixty year old male in a wheelchair with gorgeous looking legs you'll know it's me.l

Tuesday, 8 September 2015

In bed

It is now eight minutes past four in the afternoon and I have been asleep most of the Day and most of last night. Last week I had some blood tests, the reason for the tests was I was feeling a bit under par. The results have come back clear but why do I still feel awfully? If I don't feel well enough I can't see me getting to Canterbury tomorrow. I know that seeing the MS Nurse won't change my condition but I was hoping that she would have some ideas about what treatment I could try. I know that us Primary Progressive MS'ers prove a mystery for the medical professional's so if I can't get to the hospital I won't be missing any miraculous break to in the medication front.

Monday, 7 September 2015

A trip to Canterbury hospital to see physio for MS

This week I am due to see the MS physio, not for therapy but to see if my movement is any better/worse, I can tell you it is worse. Tonight I had to have help getting both on hand off the stairlift and then I was unable to cross the landing and Heather had to get the wheelchair, it is actually my commode but it is on wheels and doubles as a wheelchair in an emergency. All I want is to be able to move better. Tonight I almost fell over again whilst trying to get on to the stairlift, it's a right pain trying to get me up off the floor. Even with the camel which is designed for people like me it is a right palavour. My primary progressive Multiple Sclerosis has robbed me of any strengths in my limbs. You may find this hard to believe but as a schoolboy I was picked to run cross county for my county.I can't cross the landing now, am I bitter about this? Damn right I am.
I spent an hour on the internet googling new treatments, there's lots for relapsing ms but nothing for progressive. So I can't see sod all coming out of the meeting but what else would I be doing.

Multiple Sclerosis messes up my day





I have multiple sclerosis, you know the disease where people think you get good days and bad days. I wish things were that simple. I have primary progressive Multiple Sclerosis, which basically means it has got and will continue to get progressively worse. Yep I was short changed on the good luck front when I copped my MS. Going back to good days and bad days, I am now moving closer to good hours and bad days. I got up this morning breakfasted and read a bit of yesterday's newspaper. I was cold in the front room and decided to move to the dinning room as the Sun was warming that room. I sat in the sunshine and promptly fell asleep. I was awoken by the telephone ringing, yes it was still in the front room. I whizzed round on my electric wheelchair and got to it just as it finishes. Luckily the ringing promptly returned and I answered it to discover my wife Heather who was visiting her mate, the one with cancer, was about to return home. I knew she would eventually come home and to be honest could have done without the rude awakening to learn something I already knew.
I went back to sit in the sunshine and was once again woken by the damned telephone but I had it close to hand this time. I had it on my lap along with yesterday's newspaper. I answered it to discover that Heathers sister was phoning to say she was back from church, now unless the United Reform church has taken to holding its congregation hostage I found this news pretty unamazing and for fear of being exceptionally rude cut the call short. My sleep was once again short lived as the sound of the front door opening put paid to any further chance of sleeping. The one good thing was I did get some food provided as a reward for the lack of sleep.
The bain of my life I struggle but please do not offer to help
 as I might bite your head off
My MS makes every single action more laboured.From getting out of bed in the morning I know I am going to struggle through the day. Heather has to dress me walking the short distance across the landing to the bathroom or the stairlift is exhausting. Once downstairs I spend my time in my wheelchair but  getting my feet onto the footplates requires someone to lift them on as I cannot do it for myself. I struggle to eat and now use weighted cutlery and even opening a packet of crisps is a mission. My MS has affected every aspect of my life. I cant wee and have a catheter and don't ask about doing a poo. But in all this I keep smiling as if I didn't smile I may certainly be crying.


All this and more MUCH MORE