Sunday, 24 January 2016

What can I say other than I don't feel well

I think it was the great Spike Milligan who had those immortal words 'I told them I was ill' carved on his headstone.
I have been a bit like that since the beginning of the year. New Year's day was my last trip out of the house. The following day I stayed in bed thinking I just needed some R & R to get over the festivities. Well that rest and recuperation lasted three weeks. Most of that time I have spent in bed. When I have managed to raise myself from my bed it has just been a trip across the landing to visit the bathroom. One day I did make it across the landing and tried to get on the stairlift. I failed and returned to whence I had come, exhausted and in pain.
I don't know what triggers these periods of lethargy, I wish I did then I could take avoiding action. But I don't and because I don't I can't. Does that make sense?
I try and refuse to pander, within reason to my MS.  I can no longer walk so I use a wheelchair, I have adaptations like the wet room and handrails, stairlift and a hospital bed. But I try and laugh at the disease. I have a marvellous and beautiful wife who does so much for me. She dresses me washes me feeds me. She runs the home like clockwork. So whilst I say I don't pander to my MS I don't fight it my wife does. I just laugh at it, she is the hero. I couldn't get by without her.
Going back to me feeling I'll. I have been feeling rough but over the last few days I have managed to get myself downstairs and I am a lot stronger than I was a week ago. Perhaps I just needed some R & R or maybe an infection has worked its way through me? I don't know nor do I care, I feel so much better why worry yesterday is history tomorrow a mystery but today, well today has been THE PRESENT

Friday, 8 January 2016

Another infection

I tried to get up this morning. Heather dressed me and I tried to stand up, after several attempts I finally stood and tried to walk across the landing. My legs just wouldn't move. Heather took my slippers off so I could slide my feet and I eventually got to the stairlift. Once there I decided discretion was the better of valour and asked Heather to help me back to bed. She put me on the wheelchair and eventually I was safe and sound back in bed. My body always stops working when I get an Nigel of an be it throat infection lo or as is this normal a urine infection. I used to be ureatheral catheterised and I suffer infections most months, but just over two years ago I had a supra pubic catheter fitted. In those two years I have only suffered a few infections.

Most of these have shown abnormal blood markers rather than me having problems with a urine infection. My wee smells most of the time, our daughter came in tonight and immediately said Dads got a urine infection. I will have to wait until after the weekend to sort out a blood test. By the time the results come back I will be walking with my zimmer frame just fine and my wee won't be smelling anymore. In the mean time it looks as if it is bed rest for me. 

Monday, 4 January 2016

How I got my diagnosis that l had Multiple Sclerosis

I have had my Multiple Sclerosis for over twenty years now I was finally diagnosed as having MS around 1994 but I had known I had a problem long before my diagnosis. Multiple Sclerosis is or was then extremely difficult to diagnose. I had seen several specialists and was finally admitted to Brook Hospital at Woolwich South London where I underwent a barrage of tests and last of all was a lumber puncture. The neurologist wasn't even going to tell me my results. But when he was telling me I could go home he said "we have some good news and some bad news, the good news is that you can go home, the bad news is we don't know what is wrong with you"
I got cross with him and showed him what I was like running. I ran Dow the corridor and immediately fell over in a heap of twisted limbs, my legs had got confused . He walked over to me helping me back to my feet. He clapped me on one shoulder and said" Well if you must know, cleared his voice and then said My dear young man you have Multiple Sclerosis" having said that he turned on his heels and walked away. He had the bedside manner of a house brick and subtlety was not a strong point. Before he retired a few years later at an out patients appointment he said "get used to it because this is as good as it gets its all downhill from know on". Charming man and I must say I never once missed him after his retirement. I think he took a dislike to me after I had balled him out when he'd was doing his rounds, he talked to his students and never once referred to me he ignored me and walked away with his entourage in tow. I shouted very loudly for him to come back and show me the common courtesy of now speaking to me about my condition.
We never did get on after that but the nurses on the ward worshipped me.

Sunday, 3 January 2016

Multiple Sclerosis messes up my Saturday

I hope you have had a great Christmas and New Year, I most certainly did. I love it when I get to spend Tim with the family all around the table eating and drinking and all round good fun. Unfortunately my MS usually dislike' s me to have any fun. It always finds a way to spoil my fun times and I often have to pull out of arrangements because my body won't let me join in. One of the problems is bowels and another is muscle tone, infection anywhere in my body can cause the tone of my muscles to become so stiff I can't bend a leg or arm or even log my head off of my pillow.
One of them reasons used to be urine infections. I am catheterised unroll two years ago I had a ureatheral catheter. I had so many urine infections then it was a joke, it seemed a constant thing and most months I would end up unable to move because of an infection messing with me. Well two years ago I went over to a supra pubic catheter. It goes direct into my bladder through an incision just above my pubic hair and below my belly button. Since having the supra pubic catheter I have gone from near constant infections to virtually no zero. Honestly it has been that dramatic. But as I am laying here today writing this piece I am pretty sure I have an infection.
Yep stiff limbs smelly urine and today I slept for twenty hours straight. I woke a few times when Heather came in to me, I had  bit of lunch with her and our daughter, pate on fresh crispy finger rolls, I ate it in bed hardly able to lift my head. Drink my tea was not easy but I managed to get it down my neck without using the feeder cup that I often have to resort to. Once I had finished I was asleep again only waking when Heather woke me to drink some water, intake of fluids is important with urine infection as if helps flush the kidneys.
Well I actually woke about eight pm. And went downstairs much to Heathers disapproval she had visions of me being unable to get back upstairs and having to sleep in the wheelchair all night. I managed it and as I said I am now back in bed not feeling tired and dwelling on why this infection has struck now. I put it down to having done so much over Christmas. I have been out and enjoyed myself. I never rested when my body said slow down and I am paying the price for such excesses. Normally I pace myself, I haven't I didn't want to and MS was not stopping me. I suffer from acid reflux and I ate all the things I knew would come back and get me. I didn't care. It was Christmas and then it was new year. New Year's day was a two curry day I excelled myself and the price was lots of antacids and twenty hours in bed. Was it worth it? Hell Yes.