Sunday, 20 December 2015

I have finished my hydrotherapy.

I have finished my course of hydrotherapy. My legs may be marginally less stiff but I doubt it. Six week's of being in the pool and having the physio strain to try and loosen my hamstrings. And I do mean really strain. It has been wonderful to do something different but all it has done for me is make me feel knackered. I also had botox injections into my hamstrings and I cannot help but wonder how little my muscles would have released without the boots as the injections shut down part of the hamstring.hydrotherapy

Thursday, 5 November 2015

My book never arrived today

I ordered a book off of Amazon and got the email thanking me and saying estimated delivery was today. Wrong. I waited expectantly all day and each time the door bell rang my ears pricked up. I hope it gets here tomorrow I am excited. If it doesn't I may well kick next doors cat. Up early in the morning ready to ambush the postman as he comes through the gate.

Wednesday, 4 November 2015

My physiotherapy is about to get a whole lot wetter

As I write this I can hear the rain beating against the widow panes and as the traffic drives past I hear the sound of puddles sending spray out against the parked cars. Yep it's pouring here in Margate, but that is understandable in November! Even seaside resorts get rain in the winter. I have been seeing a fantastic physiotherapist at our local Hospital the Queen Elizabeth the Queen Mother. Or QEQM as is is know as locally, after all Queen Elizabeth the Queen Mother Hospital is a bit of a mouthful isn't it? So back to my physiotherapy. I am not going to have to stand outside in the pouring rain and do my exercises I am going to go in the Hydro pool!!!
Yep after about twenty-five years I am going back in the water. I exaggerated I last went swimming about ten years ago, the OT that came out a couple of months ago recommended it and after three sessions on dry land my next one is going to be in them pool. Heater went out today with her sister in search of swimming trunks. She started looking for my old pair but after ten years if she had found them I doubt they would have fitted, I am slightly more cuddly these days. So next week I am getting dunked in the name of physiotherapy. Wish me luck.

Saturday, 17 October 2015

bored in bed

I an in bed listening to the footie. I had hoped to be watching it but my kindle won't play BTsport because I am in bed and my laptop is downstairs the only way I have to learn what is happening is radio, I must say at sixty minutes its still nil nil so it's not a classic. Heather is out with our eldest daughter and has just phoned to say she is bringing a Subway In for lunch. We haven't had Subway for a couple of years so I wonder what I will be getting?
Mystery at lunchtime, I doubt it will be as mysterious as why this match is nil nil. Liverpool's new manager must be wondering the same. My family will be divided by the match my grandson supporters Tottenham and my son supports Liverpool. Still it ended up as it started nil nil and I had a steak Subway. Mystery what mystery..

Saturday, 10 October 2015

how to cure loneliness

Cure loneliness, as if I could wave a magic wand and it is gone. No more panic attacks, no more biting your nails when around people, yes you can be lonely around people! No more staying away from events family parties work do' s or anywhere you have to talk to people, most lonely people actually avoid human contact. The truth is to avoid being lonely you have to want human contact. Most lonely people shun  Harman interaction. They don't feel worthy of people they feel in some way that they are not good enough to be with that person or unable to fit in with that group at work. It is easier to avoid contact than to risk rejection. And the fear of rejection is the biggest obstacle to overcome. Cure loneliness if I could cure it I would be the most popular man in my street. I can't cure it but you can! Scary ehh ?? Yes it is possible to set in place techniques to overcome the panic attacks and anxiety but you have to do that, I won't be there but you will. I can't do anything. I have no special power's I can't cure anything. Now we have established that fact you have a choice, you can close this blog and forget all about it, carry on fighting everyday. Or you can read the next instalment. I will leave the choice to you, I will write my next post in a few days which will give you a chance to think about whether you want things to change or do you want to carry on as you are.?

Wednesday, 7 October 2015

Lonely and depressed ?

I have spoken on depression and it is a seemingly endless topic to cover  and no doubt I will return to it but it is by its nature depressing. So here is another aspect which contributes to depression and that is loneliness. Say you are depressed it is possible to feel alone in a crowded room, being surrounded with laughing happy people in not a requirement to feel happy and bubbly yourself. Being around people can go a long way to alleviate loneliness but it can also trigger depression, why am I not enjoying this as much as they are, why am I not laughing and smiling? Then you feel bad about yourself and because you are beating yourself up over not being 'as good as all those happy smiling people' it feeds the paranoia, it becomes self perpetuating. Next thing you know is you avoid going to places where others will be enjoying themselves.
The avoidance manoeuvre is easy. Don't go and you don't feel bad but you do feel bad. In fact you feel doubly bab. One time bad because you didn't go and two times bad because if you had gone you would have been feeling bad because you had mad a really big effort to get there and sill you were feeling awful. This could be endless if you extrapolate further excuses might even make double or treble digits in the excuse stakes. You might even find a thousand reasons. But you know as well as I do excuses are just a lie you invent to make yourself feel good. IF THAT WERE TRUE WHY DO YOU FEEL SO AWFUL?
Yep you are even telling yourself lies to cover for the real reasons those being you are lonely and you are depressed. The hardest thing is recognising it. Then the other thing is doing something about it. If you have read this far we'll done. Yes you deserve a medal, no truly if you are seeking help to have stuck it this far and have me pointing out this stuff you are either a counsellor or you are depressed and lonely and are seeking help.

Tuesday, 6 October 2015

Depression part two

Do you believe in signs and wonders? NAHH me neither, I once went to a discussion group in a church just outside London, Harrow on the Hill I think it was. Well after listening to some bloke witter on for an hour I told him he was talking shite. Sorry for the language but it was the expression I used and I went on to tell him I had seen him speak before and I thought he had been shite then as well. I am not sure how he took my interpretation of his messages to the people he was trying to encourage because I have not seen him since, and I doubt he would seek me out to ask my opinion evidently I am brutally frank. The reason I mention this incident is two fold. I had gone to this meeting hoping to find encouragement and I think you know the answer if I ask the question "did I".
Be careful what you seek, be careful where you seek and be careful with whom you seek. I have sought answers from people who were never going to help me nor support me, the hard part is recognising that these people are harming you. Not physically not bashing you with a stick or stabbing you with a knife. No the don't leave marks or bruises, they scare you inside where it can't be seen they scar your mind. Your still as intelligent as you always have been but because they have planted seeds of doubt and you let them grow the damage is done. You can't see it, it's not visible but you are as wounded as if you had been stabbed. Instead of blood leaking out of the wound you have let the seeds grow and then insecurities have set in, instead of blood you have lost self confidence. Doubts have replaced your ability to make out that something that gave you the strength to be confident. Now instead of I can you ask yourself can I? Instead of I will your mind gives excuses why you can't. The once the self doubt creeps in you will want to be with those who reinforce the fears that you cannot do stuff. Instead of seeking those who reaffirm you time is spent in the company of those that tell you that you cannot do it they feed the fears and support your doubts feeding those seeds and growing them. They water those seeds and nurture them. Feeding them and enabling them to mature.

Monday, 5 October 2015

Lonely and depressed?

I normally listen to radio two in the mornings, Chris Evans kicks my day off fine. I turn over when Ken Bruce comes on because I can't stand him. I find him depressive not something I need in the mornings. I can listen to depressed people anywhere and I normally try and avoid them, hence my turning Ken Bruce over. I like over a quarter of the world suffer from depression but  I actually know about it. I sought treatment for my Black Dog and my GP prescribed some antidepressants. Last year I increased the dose after a spell of suffering infection after infection that kept me in bed for several week's. The antidepressants keep me on an even keel and if you are feeling a bit anxious sleek to your doctor, I often say the best two tablets I take are my antidepressants. And such a small thing as that can make my life more pleasant and bearable.
Getting back to the radio, one day last week I turned the radio on and it was tuned to radio four. I don't mind radio four I listen to the plays and try and keep up to date with the Archers. For some reason last week I hadn't tuned back into radio two and was unable to change station. My radio is the other side of my bedroom and Heather had got up early to take our eldest daughter to drop her car at the garage and then give her a lift to work. So I was stuck, I can't get out of bed without assistance and seeing I have given up falling over. I stayed put and listened to radio four and some chap babbling on about depression and people being lonely. I have got the first one of those sorted, my two little tablets ensure I am not depressed and I am never lonely. But according to the chap on the radio I am in a minority. More and more people are both depressed and lonely. An ageing population and a number of reasons people are lonely. I know people who can feel alone in a crowded room so it came as no surprise to me, but the numbers are staggering. Over twenty five per cent of adults feel lonely. And a lot of those don't see anybody often for days at a time.
Loneliness like depression is treatable but you cannot take a tablet to heal loneliness. It takes some input from you. Yes you have to do something about it. I will come back to this, I am in bed writing this and rather fancy getting some sleep. So this is part one, I will continue this soon.

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

Wednesday, 26 August 2015

In bed again

I have another infection, it's crept up over the last couple of weeks. Nothing dramatic but ending up with me finally giving in and calling my doctor yesterday. He has prescribed a course of antibiotics. I am now exhausted as they fight whatever it is that is making me feel so crap. I was due for physiotherapy today but that has been put on hold, just as well because I have been asleep virtually all day.

Sunday, 23 August 2015

Sleep stops viewing

I waited all week to see the grand prix and just as its about to start I receive an invoice  to pay a visit to the little boys room. I had to be paid immediately hence mis the start of the race. Decide I am upstairs watch the race laying on the bed, one it's closer than going back downstairs and two I am exhausted. I lay on the bed and promptly go to sleep. All blooming week I have looked forward to that and I missed it all except about ten laps. Plus I never recorded it. Oh I love my life!

Friday, 21 August 2015

Promote Thanet: Forbidden

Promote Thanet: Forbidden: Eyesfront Productions a Margate based independent film production company have made the promo for Forbidden a story of love that is Forbid...

Sunday, 9 August 2015

I knew it couldn't last

Been awake since two thirty with heartburn. Having had a few days of sleeping OK tonight it is black with a vengeance. I have finished  one bottle of peptac off and started a new one. Heather got up and made me tea which has made it worse but it did break the boredom. I tried cider vinegar the other day but l hurt even more and had to use peptac to sooth my furrowed brow. Heather has just sat me  up on the edge of the bed and I burped loads but now I am laying down again the pain has returned. Not long unroll morning, oh joy of joys the seagulls have taken up or more precisely one woke up and sqwarked unroll all its mates joined in. This is an extremely uncomfortable Don signing off.

Monday, 3 August 2015

The joy of acid refux

Don't you just love it? Waking up with the taste of long forgotten food in your mouth, you know what it is the moment you wake. Tonight it is a lamb kebab cooked on the BBQ almost twelve hours ago. The taste is accompanied by a burning  in the back of your throat, a burning that runs back down to my gullet and hurts like hell. I haven't had reflux for a few weeks but today's BBQ was held in a park miles from home and the tablets I take were at home. Yep it's my own fault that an hour after drifting off to sleep I am rudely awoken by my food making a run for the exit. I started these new tablets about the time my acid reflux stopped occurring. I even thought those tablets don't make any difference and here we are on the first day I have not taken them with my lunch coming back to say hi. Not only say hi but to wake me from my slumber in the cruelist of ways tease me awake with the memory of eating and enjoying my food. As I became more awake I realised the taste was subtly different! This taste had the disgusting acid back taste, not a background hint but a full on assault. I wanted to this up but being bed bound I swallowed it back. Yuk. Now I am laying here with the taste of peptac in my mouth and my ears are listening to the concert my gut is putting on as peptac does battle with the acid and the food. Heather woke and made me a hot tea and that is churning in the mix along with the cheese and biscuits I had for suffer oops that was a typo should read supper.
Been awake almost two hours maybe the fact my eyes are in need of match sticks to stay open will allow me sleep again? I am so tired I must try. Night folks, wish me luck.

Wednesday, 29 July 2015

can't sleep

My last post was about me being awake with indigestion, well this is more of the same. I woke up nearly an hour ago in search of Peptac yep drinking straight from the bottle again. I need my sleep as I have a physiotherapist coming at ten and I expect it to involve me getting exhausted! Maybe I cam manage but I am already worn out. 

Tuesday, 28 July 2015

Heartburn and indigestion bites again

Last night I woke at two thirty, tonight at two o'clock, if it carries on like this I will wake up before I go to sleep. How come it hurts so much? I am no whoosie but last night I actually had tears in my eyes from the pain. Tonight the pain just woke me up. Shortly after putting the light on Heather wakes up, she sleeps in another room  !! It's like she has radar !! Well now it's three o'clock and I have checked my emails, I don't have any which is some sort of first maybe it's a bank holiday for spammers. I looked on Facebook which never sleeps and now I am blogging. I find writing this junk therapeutic so if I bore you I don't plan on stopping any time soon find another source of reading matter.
We now I have alienated my two remaining readers and I am just writing this a a therapy let me begin. I am am taking Retadine 40mg twice a day which gives some relief previously I have taken lanzoprozole and panprotazole both excellent medicine's but now I am also guzzling peptac like it is going out of fashion, I no longer use a spoon I am a hard-core user I swig it straight from the bottle and like a drunk I keep bottles in different locations around the house. Earlier before the local chemist shut up shop for the Day I sent Heather out for Rennies thinking I would try something a bit different. She came back having spent four pound on some chewable tablets. Four quid for twenty tablets.  Dosage up four tablets at any one time maximum sixteen in twenty-four hours. As I said it's getting hard core I will need to resort to prostitution to pay for my habit soon!
 I have just been looking up natural remedies and tomorrow I am sending Heather out in search of Apple Vinegar and a box of baking soda. That is two separate remedies so I will be trailing them in the coming days. Sorry for the short pause in typing I was swigging yet more Peptac. Looks like an early night tonight it was almost six before I was able to get back to sleep but tonight it's not yet three thirty. It must be because it never made me cry tonight.
I am turning in, night folks.

Wednesday, 15 July 2015

Supra pubic catheter changed today

I got a phone call about two thirty and the cheerful voice asked "are you in" stupidest questions are my specialist subject. "No" replies me. "How come you are answering your phone then" the cheerful  but now weary voice asks? Hmmm good point me thinks and whilst I am temporarily caught off guard the voice says "it's the nurse I will be round to change your catheter in about half an hour" "are you bringing cream cakes I ask" only to be let down, evidently it's my job to provide tea and cakes!!
Sure enough she turns up and sure enough no cream cakes, but she was as cheerful as her voice.
Evidently she had been before a couple of years back when she was training, I don't remember sod all so I'll have to take her word. Now she is trained and can even take blood as well as change catheters but evidently her speciality for this week is changing leg dressings and although it is only Tuesday changing my catheter makes a welcome change. I do tell her she needs to get out more but evidently district nurse's don't get the time because by the time they have spent all of their days changing catheters and dressing ulcerated legs they can't go out because of exhaustion.
Sure enough the job is now done and she has to go. Happy and cheerful my she heads off  and I have a short lay down. I don't know why but I find it stressful and it makes me sleepy. Well that's been my day, hopefully your day has been less eventful.

Sunday, 28 June 2015

Living with Multiple Sclerosis

Those of you who read my blogs will know I have Primary Progressive Multiple Sclerosis. I was diagnosed over twenty years ago and as the name suggests it is and has been progressively getting worse over the twenty odd years since I was diagnosed. Today I have been in bed all day and only got up about three o'clock this afternoon.  I have got a blocked ear, it is something I have suffered from before but today with olive oil and cotton wool stuffed into my ear it has made my MS rebel and my arms and legs will not work as normal. My normal is not running and jumping, it is not even walking. I can manage about twenty baby steps whist grasping my zimmer frame. It takes me several minutes to cross the landing and it exhausts me. My normal mode of transportation is my electronic wheelchair.
This blocked ear has thrown me a googlie my balance has gone and my legs won't even do baby steps, my MS has said I am busy coping with the ear problem I am not playing with the bending and sitting to get on the stairlift and as for walking forget it.

Ear Wax blockage

I am really struggling today last night after my shower I couldn't hear anything out of my left ear!!!
I haven't had an ear infection or any sign my ear was blocked so this was out of the blue. I always set the shower jet to fast and spay my ears every time I have a shower but even with doing that I occasionally have to go to the GP and have the wax removed. I have got Olive Oil in that ear now and cotton wool, it feels very odd. I feel as if I am under water and of course my hearing is out of synch and I am listening in a very odd stereo. Me thinks a phone call to the doctors surgery is in order tomorrow morning. I will not be using earex or similar over the counter preparations as at £3.50 for 15 milliliter it works out to about £100 a gallon I always find stuff sold in small bottles expensive.   Wish me luck.

Monday, 15 June 2015

Blood tests reveal infection

Slightly surprisingly the test results from my stinky wee came back negative, from the stink of my leg bag and when we drained the catheter it smelt as if a rat had crawled in and died! Smelly maybe but no infection. Plan B was quickly organised, my GP not to be beaten and I am sure an element of Kick a man while he is down she sent out the nurse to take my blood. Not all of it but a sizable quantity of it, she wanted checks for everything which amounted to six jars of blood. Glad they weren't jam jars. Well to cut a long story down to more or less short. Friday morning my GP turns up on Friday with a new lot of antibiotics and the news I have an infection ( I knew that but nobody's ever been interested in my opinion ) an inflammatory type evidently. Well that's my take on what she said I can't remember much I was to busy feeling ill. She sat there talking to me holding my hand and telling me blah blah blah strong antibiotics blah blah markers blah blah stratospheric blah!!!!
Wake up did she say numbers and stratospheric about me and my infections. Yes rewind, she is a family friend as well as my GP and explains that a normal raised count would be 12 and mine had come in at 128 over ten times over bad. No wonder I had not been able to bend my knees to get on the stairlift and that Heather had need to call Darrell our neighbour to help to get me to bed last Wednesday night. I now fell justified in feeling so ill. Now on Monday I am four days into the new antibiotics I think I am over the worst. I sat in the chair in my bedroom and ate my lunch today, that's progress real progress. The MS nurse phoned but I couldn't talk my brain went to mush when she talked to me so I transferred her to my social Secretary a job Heather does so well.
So that's been my last few days as they say in a nutshell. Hope you are doing better than me because if not yo are having a bleeding awful time of it.

Monday, 8 June 2015

Antibiotics are working

If you have been following this blog you will know that I am taking antibiotics, Nitrofurintoin to be precise. I only have two days of the course left to take and I am feeling much better. Hopefully the infection is gone and it will be another eighteen months before I need any more antibiotics. I must get onto either my GP or the MS Nurse to see if I can be considered for the cannabis spray Savitex because my leg muscles are getting so tight any movement is a real battle. That is my mission for tomorrow, my mission for tonight is sleep so night night.

Rewind a couple of days later I am worse than ever and results say that I don't have a UTI so no urine infection.

Been asleep virtually all day

I know that I have got an infection but the antibiotics have  started to kick in and today I have slept almost all day. Each time I woke I said to myself get up you lazy git and I promptly turned over and went back to sleep! I did manage to watch the Canadian Grand prix and the comedy show plus have a shower. I am now exhausted so maybe I will sleep now so good night.

Saturday, 6 June 2015

Antibiotics for UTI

My default antibiotic for Urinary Tract Infections is nitrofurantoin, when I phone the surgery on Thursday my GP prescribed them to be taken after I had done a sample direct from the catheter bag. In the past I had done a sample into a jug and then into a sample pot, it gives a false reading so slapped wrists for Don. If the antibiotic is not suitable it will be changed next week once the results come back from the Pathology lab. I have tried all sorts of different antibiotics over the years and even had then intravenously when one UTI turned into septicemia I was hospitalised with that infection. Urine infection can turn serious very quickly so if you detect smelly wee or pains contact your GP sooner rather than later. The other problem with taking antibiotics is bowel problems. Not for faint hearted but people like myself with poor mobility need to pay attention to stomach pains as
I have often had accidents when taking antibiotics.

Image result for uti catheter 

Friday, 5 June 2015

UTI Stops me moving, my MS dislike's infection's

I have done very well on the bladder infections since having my supra pubic catheter fitted. Previously when I had the ureatheral catheter I got an infection  about once a month and even suffered scepticemia at one bad bout. But I had the supra pubic installed over eighteen months ago and this is only the second infection in that time. Unfortunately it is a nasty one. I can had my move and had to go in the wheelchair to get across the landing to the bathroom. Even writing this post is difficult so I will sign off .
I am back and what a difference a day makes, I am up and downstairs I had breakfast in bed and lunch downstairs. I am far from OK but I am sitting downstairs watching Springwatch Live Spineless Si is tending the eggs  and the Blue Tits still haven't fledged. Our eldest daughter has been here for lunch and she just carted Heather off for a walk in the sunshine before going to look at a different car. She wants her mums opinion!!

Friday, 29 May 2015

Need to contact MS Nurse

I haven't been on top of the world today, kept myself to myself even though the house has been like Piccadilly Station. Grandchildren their mum's dad's aunts etc in and out all day. About a month ago I spoke with the nurse about cannabis spray and the continence nurse I have not heard a thing from her about either subject's. My movement is getting worse my left leg don't want to play and that makes the right leg have to work harder it's a vicious circle. My bowels have always been a problem and I need to speak to the specialist incontinence nurse about them. So after another week of thinking Monday is action day. 

Tuesday, 26 May 2015

Fatigue and Multiple Sclerosis

I went out to our daughters on Sunday for our grandsons birthday party.  Monday was a slow start, lots of sleep and watching television nothing to strenuous. Today I also have had a slow start. Although I feel more awake today I just have not had the energy to do anything. I have been in the wheelchair all day. Even if I had wanted to move I knew it wasn't going to happen, I was exhausted. One afternoon out with so much going on so many people to listen too, all that extra stimulation to my brain had exhausted me both mentally and physically. I know all I did was get into the car and was wheeled into our daughters house, but it's mentally strenuous. The ramps have to be placed like a seesaw over the front step I have done this several times but it tenses me up you can't help it being stuck in a wheelchair your brain works overtime. If I fall out of that chair it's gonna hurt. My mind knows this my body knows this and just because I am saying it's alright my mind and body don't listen.
So on the way in and on the way out I am fighting with my body and my brain. It's exhausting! No wonder for the next few days I suffer from fatigue. It's exhausting enough on a day when I am not going out but then you add extra into the equation I know when I get home it's going to take a few day R&R to get my body back to a sensible level of exhaustion. Fatigue is not just feeling tired it is much more complex, I am way past tired, I feel tired all the time, every minute of every hour of every day I struggle with feeling tired, I am writing this laying in bed and I am tired and I know I will feel just as tired tomorrow when I wake up. But my MS fatigue is every muscle and every sinew wanting to burst to break and say NO MORE but I have to disappoint them because I still have a life to live and fatigue management is how I roll.
I wish I knew how I manage, I just do. I have a fantastic wife who looks at me if we are out like we were Sunday and she says home. And whilst I won't and don't want to give in I know that she is right. I could have stayed but I would have had to pay the price. It would have taken even more time to recover. It's all about obtaining the right balance.

Saturday, 23 May 2015

Another Example of Rip off Britain

Heather came back from the chemist yesterday having gone to get a bottle of Peptac. I get it prescribed but she was taking it to our friend who is undergoing chemotherapy treatment. The Chemo plays havoc with her digestion and she is having trouble keeping anything down.  How much is Peptac compared to the brand leader Gavescon? Well same size five hundred mil bottles GAVESCON  was twelve quid PEPTAC three quid.
Another on me that gets me is Earex I just did a Google check four pounds city five pence for ten mill. Fort five quid a litre about two hundred quid a gallon in for those who still work in old school measurement. Considerably more expensive than petrol. Now I am not naive enough to think firms make these things for the fun of it but with those two examples I think the title rip off merchants fit.

Friday, 22 May 2015

I have become a Merman

I came out of the bathroom earlier struggling with my zimmer frame and bouncing off the door frame, it is my usual method of getting back to the stairlift. As I was doing this , dragging my legs across the landing it occurred to me that I have become a Merman. Mermaids and the like I have always considered to be the work of fiction writers. But Mermaids would struggle on land pretty much as I do. I manage baby steps just dragging the soles of my slippers over the carpet. To turn I drag my legs after my torso tags made the move. I have very little control over my legs,when back sitting in my wheelchair Heather has to put my feet back on the footplates. So sometimes as a disabled person I feel a bit like a fish out of water I now know why, I am becoming a Merman.

Wednesday, 20 May 2015

chemotherapy day again

Our friend has her chemotherapy again today. She had to put it off last week because she was being so sick. She seems to have a week of not managing to eat due to the treatment and she looses so much weight and then a week of eating to put a bit of weight back on and then it's chemo time again and back come the sickness. It seems a viscous circle and of course it is leaving her so weak. I wish there was some way I could help but what can I do. Cancer is such an awful disease and the chemotherapy and the sickness must be awful. I know how bad I feel sometimes not wanting to eat but she eats and it comes straight back. I hope she is OK tomorrow if things are going to plan after this dose there is just one more dose to go.

Now it's trouble waking up

It's an obvious thing to say after not sleeping last night I woke up late. I would still be asleep now had the phone not rang. When I was working I often had five o'clock starts and did a hard manual days work. Now I sit in my wheelchair all day and the most physical acts are getting on and off the stairlift. When I see our children or grandsons bounding up the stairs it makes me smile. I am not the type who looks at life jealously. I have had a fantastic time and now I have had to accept a different life to the one we had envisaged. Life as Forest Gump said is a box of chocolates. When I was a roof tiler no one could have ever imagined me ending up in a wheelchair unless I had fallen from a great hight. I once fell from eight feet and broke my leg but even after having my leg in traction I was straight back to roofing as soon as the plaster was off. So it was somewhere in my nervous system that put me in a wheelchair. Ironic when you think about it because I have fallen from buildings and got up, but a malfunction of my own body sabotage' s me.
Yep got most of these Yippee I love MS

Trouble sleeping

I sat in the wheelchair this afternoon with the plan to watch Chelsea flower show. You can imagine how annoyed I was when I woke up half an hour after it finished! Trouble is now I can't sleep, I can feel my eyelids getting heavy so I will sign off now, let's hope I can actually sleep. Night folks.

Tuesday, 19 May 2015

Lazy days and Tuesday again

Well it's Tuesday and I am having a lazy start. Breakfast in bed shortly and then a shower. I had my catheter change yesterday and it leaves me mentally exhausted. The nurses are fantastic but when I was urethral catheter every change ended up with an ambulance ride to hospital and I can't remove that stress from my mind. Now I have had a supra pubic inserted no more ambulances and only one infection in two and a half years were as I used to get an infection most months before. So Heather is making me coffee and porridge then I will get a shower. Not a bad start to a Tuesday?

Sunday, 17 May 2015

Wheelchair or scooter

I now use an electric wheelchair, I used to be in a self propelled one but I am getting older and have developed rheumatism in both wrists. Now that I have the electric wheelchair why would I want  a scooter? The answer is simple my wheelchair weighs approx fifteen stone. I could have told you that in kilos once but having grown up with stones I got the weight in kilos and did the conversion and I remember the imperial measure rather than the metric. Try as we might loading a hugely heavy thing into anything is crazy. My wife Heather is only five feet tall and she is strong she manages to shift me around but the wheelchair is a step to far.
We still have the self propelled chair, it's ideal for short trips to the supermarket or the opticians. Even short trips along the prom or to the barber's but for a nice afternoon walk I can't expect Heather to push me and as I said the rheumatism means I can't get far under my own steam. So the electric scooter then comes into play, for the last fifteen years my Shoprider has been marvellous, it's been over hill and Dale soaking up many miles in its life. But now it's getting to heavy for Heather to get in and out of the car and even disassembled its getting to much. Which brings me round to the purpose of this post.
I have always been a great advocate of Labour saving devices. When I worked on a building site bricklayers could have mixed the mortar by hand but they used cement mixers on big sites they used mechanical hoists to load pallets of bricks or roof tiles onto scaffolding. It saves time and more importantly it saves Labour. And to many people struggle on refusing to accept the Labour savings offered by wheelchair or scooter. Painfully carrying on not giving in, when in real terms they would benefit from a Labour saving device, but no that's accepting defeat. Like as heck is it, the energy taken struggling could be used elsewhere. All to often people don't seek labour saving devices unroll its to late. Classified sections are filled with scooters that were only used a few times my advice is get one and use it and the energy saved in struggling back from the shops well use that energy on enjoying life after all this ain't a practice run this is the only time we are here.

Saturday, 16 May 2015

I feel better staying at home

Heather and I were offered a cruise round the fjords and Baltic then on to Iceland. All paid for first class cabin etc with friends of ours, their treat. I phoned today and refused the offer and I feel great. Don't get me wrong they are great company and I would love to be well enough to make the trip. The trouble is I am not and all I would be doing is setting myself up for a fall. I may even have managed the cruise but we MS'ers know you pay for everything, an afternoon out and it results in two days in bed. Can you imagine the payback my MS wracked body would demand of me for having the sheer affrontary the gall to even considering a cruise? A couple of years back I ended up in bed for nearly three months, I ain't going through that again.
It was a kind offer well meant and with the best of intentions but I can't go the sheer exhaustion of thinking about it had me scared very scared.

Friday, 15 May 2015

Rainy days and Tuesday's always get me down

The title is not true at all. Yes I know that Karen Carpenter sang Monday's but give me a bit of artistic licence here please. I always have and always maintain Tuesday is the best day of the week, and any day that isn't a Tuesday can gain honorary Tuesday status for the simplest of reasons, see a penny pick it up and suddenly a cold wet Monday has gained Tuesday status. Get a cup of unexpected coffee yep you have guessed it Tuesday again despite the fact it's any other day of the week it has become an honorary Tuesday. SIMPLES. In the song rainy days got a mention for being a bit of a downer. Wrong no such thing as bad weather just bad clothing. I will be sixty next birthday but when ever it rains I am transported back nearly forty years. It's easy to do  My brain has time slip and can go backwards forwards in any direction a little like the elevator in Charlie and the Chocolate factory. Neet hey? Most people worry about stuff but with a Willy Wonker brain worry is not an option.
Back to rainy days getting me down as I said bad clothing makes for a bad day when it is wet so I take myself off to when our youngest daughter was born thirty five years and counting. I had our eldest daughter in the pushchair rain cover ready in case the threatened rain arrived and off I set. Me I am in the obligatory garb of a young dad jeans and tee shirt. Well mother and baby safely tucked up in bed I walk a visiting friend back to the train station and in the knowledge of mum and baby sister safe and sound I head for home via the scenic route. And yes it begins to rain, the rain cover come's into use and we have one very happy little girl giggling that she is in the dry but daddy is getting wet, very wet. It was a hot August day and we had the banging of distant thunder and sheets of rain, a summer storm and boy was I wet? Tee shirt soaked jeans wet through nothing I wore escaped dry and I just walked on chatting to our eldest daughter and as proud as punch. A new dad walking his daughter in the hot summer rain. So whenever it rains I am back there thirty six years ago this August. Nothing can wipe away that feeling that was proper good.
So Rainy days and Tuesday's don't get me down. Being down is a straight of mind I do not recognise. Have an honorary Tuesday today and think happy thoughts, I can recommend it.

Tuesday, 12 May 2015

Fish and Chips on the Quay at Sandwich

Our friend has her next course of chemotherapy on Thursday and we all wanted a trip out. I never got up until two pm. And after some general faffing around we got to Sandwich about  six thirty. A warning light on the car had delayed us but better late than never. I settled for cod and chips and if you ever find yourself in Sandwich the chip shop by the bridge on the quay is our favourite and I wholeheartedly recommend the cod and chips. I can't remember what Heather had I think it was a child's portion after all she is only five foot nothing. After finishing I asked Heather to move because the Sun was blinding me. We headed out of Sandwich towards Worth and then headed off the main road, you can't really get lost but we didn't actually know where we were. We headed towards a name on a signpost until we either go there or were attracted to a better sounding name on a new signpost.
So although technically not knowing where we were we  knew if the next sign post away from the way we wanted we could always retrace our route. It was dark when we finally got home. But it's been a great evening out and now I am tucked up in bed with a new bottle of Peptac and I have downed some painkillers let's hope I can get some good sleep. I am overdue a catheter change so a call to the district nurse is my first job for the morning. Oh and I need a haircut after all I have to look good for my adoring public. Night folks sleep tite.

Sunday, 10 May 2015

I feel absolutely awful

Having not been feeling very good for most of the week it comes as no surprise that I am feeling awful tonight. I didn't get up very early, nothing unusual in that I often watch James Martin and his Saturday Kitchen guest's in bed. And today was no exception other than an urgent trip to the loo fifteen minutes before the end. We messed around allday and then rather than Heather having to cook we planned to go and eat KFC in the car somewhere. After a call from one of our grandchildren we took him and his mum to the drive through at Chestfield Whitstable and once having Parke they all traipsed in and collect the food, the queue for the drive through went round building into the main road. They came back to the car chatting away to some random stranger and her two children. Once my family waved goodbye and got safely back into the car I learned my daughter worked with the stranger so all was well and we headed off to Tankerton Slopes and parked a short way from the Seaview Cafe the home of enormous bacon sandwiches, I may have mentioned this establishment once or twice before.
We ate our Chicken and chips and I managed to stay relatively clean for a change, no doubt I was showing off to my Grandson. I downed my cup of hot chocolate whilst they put the rubbish in bin and then played tag on the grass banks. The numourous benches serving as home. With my paper cup disposed of into the rubbish bin we headed for home playing spot the colour car. We even found gold and purple colour car s eventually and green and brown both proved hard to find not least because by now it was getting dark.
Once home I had to dose up with Peptac and sat in the wheelchair watching my weekly dose of subtitles in the shape of BBC fours Montalbano, Heather tells me that the series is ending this week so I wonder what will be on next week. Match of the Day starts and I am feeling queasy so head for the bathroom. By now it is full on feeling awful.
I am now sitting up in bed, adjustable beds are a gods send . I am almost full to the brim with peptac yet still the food leeks trying to escape and I feel bl##dy terrible. 

Friday, 8 May 2015

Beautiful Bluebell Woods and Chemotherapy sickness

We have a friend who is undergoing chemotherapy and today took her and her husband out for a drive in the countryside. We ended up at the woods after visiting one of our old picnic sites and the woods were a carpet of blue.  In the afternoon sunshine some recently coppiced hillside had an almost purple blue haze glistening in the bright sunlight. Ten minutes later the realities of chemotherapy came back to haunt as we pulled over for a sick stop. That unfortunately is the reality when to are feeling so low with both the cancer and the treatment that your body cannot cope and rejects the food you try and nourish it with. My feeling crap pailed into insignificance with what she is going through. We headed home so she could rest. Only two more sessions for her and then we all hope she will be clear.
It put it into perspective today. Here was a fit healthy wife,mother, grandmother struck by this insidious illness just trying to behave as nothing was wrong and she suffers in the beauty of nature. It was just wrong the paradox was to extreme. I just ask all of you who read this to see beauty in flowers, and next time you think badly  of anything or anyone remember the beauty of the Bluebell wood and remember beauty and pain live side by side. X X Don.

South Thanet no answers yet!

I have been awake on and off all night. The television was on mute with subtitles and here it is nine thirty  am. And I needn't have bothered because the count evidently will not be finished for at least another hour, a full twelve hours after the polls closed. I have had a sleepless night for nothing. I just want to see Will Scoble installed as MP for South Thanet. Our son has just called and he said "it's Thanet they can't count" I do not know what the problem has been but I am going doze now and await Thanets results. Cheeky son they can't count indeed.

I can now say we don't have UKIP as an MP but I can say Thanet Council is now suddenly  a UKIP run council.

Wednesday, 6 May 2015

Been in bed all day long

I wrote my last post whilst enjoying a midnight feast washed down with the obliquitary peptac. This morning I felt awful. I am due a catheter change so maybe I am brewing an infection. I am a master of urine infections I have had so many I could write a book on them. I have been asleep virtually all day just stirring occasionally for a mouthful of squash. I haven't eaten all day other than a Wagon Wheel followed up by you guessed it more Peptac. It is now nine thirty and I am wide awake. My day has been turned up side down. Heather is just making me a bowl of porridge that proves it I AM NOCTURNAL! MS is fantastic it doesn't come with a user's manual and all the guide books can give no definitive answers so it is all trial and error. Today should most definitely have had an error warning attached.

Tea and biccies midnight feast

 I was awake when Heather wandered in and offered tea. My reply was only if it comes with biccies. She has got shingles and it must hurt her because in forty years of marriage she has never had so many tablets, painkillers and Gabapentin for the nerve pain. Still this has become sort of semi regular thing, I could get used to it. Only fly in the ointment is I am about to eat the last one of our special treat chocolate novices. You know the extra thick chocolate ones from M&S  tomorrow's midnight feast won't be the same with only rich tea' s.

Tuesday, 5 May 2015

No cure for Multiple Sclerosis

How does that make me feel? Pretty darn upset is the mild term, I have primary progressive Multiple Sclerosis which means no relapses just onward progression of my symptoms. I have been fighting this for over twenty years now and I am exhausted, I can't walk any longer, I do manage to cross the landing with the aid of my zimmer frame. I spend my days in my wheelchair, it is a very nice wheelchair but believe me when I say sometimes my heart breaks when I see someone walk past or maybe running for the bus. It hurts!
 I tend not to go out because of the effort required wears me out, fatigue is a huge thing with Multiple Sclerosis. It is more sheer exhaustion than feeling tired. Effort required to do something has to be paid for and you know the trip out is going to leave you with muscles that are screaming at you , it's unexplainable but it is exhaustion beyond exhaustion and can take days to recover back to just feeling one's norm. And believe me when I say more is not good it's a feeling of discomfort that is just there I live with it and even painkillers don't remove it fully.
There are all sorts of other things that MS throws up, Constipation is a real problem. My bowels don't function properly and cause all sorts of embarrassment. I am ruled by my bowels. Plus acid reflux causing heart burn or indigestion. Oh and bladder problems which are now sort of solved by my catheter. But that causes problems of its own. Bladder infections can cause my MS to shut my body down so I am unable to lift my arms or legs off of the bed,now that is scary because your mind races ahead, telling you maybe  you will never move again this is you future laying here unable to move drinking through a straw. You always wonder what is next on this wonderful journey and seeing as my body is slowly giving up  am I forgiven for thinking the worst?
So am I upset about the fact MS has no cure? What do you think? I expect I am not alone in say I am way beyond upset but fretting over it won't change a thing. I have to live each day as it come fight whatever it throws at me and smile. If laughter really was the best medicine  I would be cured because if you can't laugh about it you would cry and laughter is more fun.

Tuesday, 28 April 2015

For all Disabled People I salute you

I saw this on a post about depression but each of us struggle in our different ways. I posted this just to let YOU know you are not alone.

This feels more like it

I woke this morning feeling much better than I have for the last few days. I am feeling bright and chirpy. I think I may have had some sort of infection going through me! Today is bright and sunny but I have ventured outside in the wheelchair and soon came back in to the comfort and warmth of the house. As I sit here the sun is streaming in I could be fooled into thinking it were high summer rather than the end of April. I am sitting here watching the birds and their antics on the washing line and the fights that ensue over who gets to the feeders first. I have my camera on the window ledge but the birds fly off every time I go to take a picture. Hope you are all having a good day, I know I am.

Monday, 27 April 2015

Yah I have been awake all day

After the last couple of days feeling rubbish I have been awake all day. So rather than celebrate I am now worrying about why I was feeling so tired. My bowels are back to normal but my legs are not working as good, and I use the word good very loosely I now shuffle slower and have even more trouble getting on the stairlift. Even lifting my foot to get on the wheelchair is extremely difficult. My MS has slowly wrecked my body but. It has not wrecked my mind. I am not as quick as I once was but I put that down to my age and not multiple sclerosis.  I have tried to stay positive and yes at times it has been hard I try to remain upbeat. Yes I take antidepressants and seeing as I am the one living with ms twenty four hours a day seven days a week I don't think anyone would resent me a little help keeping sane.
The computer keeps me in touch with the outside world I don't get out much this time of the year, sitting in the wheelchair I feel cold even with coats and blankets round my legs. I get out in the warmer weather but seeing the forecast I can't see me going out for the next few day's. My camera helps me, as hobbies go it is great, I tend not to mess about with my photos. Some people enjoy the post production with Photoshop or similar programs by I have been quoted as saying life is to short to learn Photoshop. It is really powerful tool and I  just can't say I enjoy that side of photography. So I try and be creative with my shots and take unusual composition' s not easy whilst stuck in my wheelchair. Even arranging a bunch of flowers can be a real challenge.
Still that's my day, I hope your day has been a good one.

I missed the whole day

Yep today has been missing in action. In fact I never moved today. Heather got me breakfast in bed and went to church and that is where I stayed, in bed. I was asleep allday. I finally got up and showered at five this afternoon. Watched a bit of telly, Poldark of course then footie on match of the Day now I am catching up on snooker, Trump is ten five in front with Fu at the table. How can I have been in bed for two days and been fast asleep? Multiple Sclerosis is a funny old disease I have not been feeling great but not anything to say  I was ill, no temperature or any signs of a urine infection so what has put me under par? If I don't know I doubt if you do but there must be a reason. I am awake now having slept for seventeen hours but I am starting to yawn so I am signing off, let's hope tomorrow is a better day.

Sunday, 26 April 2015

Had a good week but under par today

I had a bad night with indigestion and reflux. And woke Heather at six for some medication. She made a cup of tea which I didn't drink but I did manage to drop back off to sleep. We were rudely awoken by the telephone just before ten. I know it's not early but after the night I had it seemed the middle of the night. It was our friends who had visited a few weeks back, it was nice to catch up but it would have been better if I had been sleeping still. Moments after I had settled back down Heathers mobile rings and she was summoned for grandson duty. Our youngest Grandson needed to be with grandma and grand dad for an hour to save him from getting soaked watching his big brother play a football match.
When I finally tried to get out of bed nothing wanted to work and Heather assisted me into the bathroom and I had to have help getting on the stairlift! When I eventually managed to make it downstairs I wasn't feeling to well and sat myself in the front room and let the Day carry on round me. I am now in bed having managed to get back upstairs, I watched MOTD and now am finally feeling sleepy. So I am saying good night to both you and to a particularly rubbish day. The one high life was a fresh crab sandwich. Night all.

Saturday, 25 April 2015

no reflux today

How does that work? Our son brings in a pulled pork roasting joint for lunch spicy and jolly tasty. I eats my fair share between a Pitta bread  and no heartburn no indigestion and no reflux. I had cheese and ham sandwiches for tea and lots of coffee plus horlicks and here I am in bed watching Jules Holland and feel fine. I can't understand my body, I just don't know anymore. Yesterday I could bring back a glass of water my gullet wanted to eject anything and everything. Today just twenty four hours later it's all change.

Friday, 24 April 2015

Sleep is the best cure

If only that was true I would be running marathons, I have been asleep all day. I didn't get up until five o'clock. No not AM it was five o'clock PM. We have had a couple of trips out over the last few days but all I have done extra is to get in the car. So why was I so tired today. I actually slept just waking for a mouthful of squash and then zonk straight back off to sleep. I hope I can stay awake tomorrow I may actually get to see some snooker. Roll on tomorrow.

Wednesday, 22 April 2015

Hiatus hernia acid reflux

It's twelve thirty and I had fish and chips over six hours ago. My chest hurts and my dinner (  fish and chips  ) feels like it wants to make a reappearance. I have had peptac and as I write this I have had another mouthful, I now swig it from the bottle!!
Tonight's episode is the latest in years of suffering. I can actually experience redux on a cup of tea, glass of squash and most likely I could during up distilled water I know I have tap water. What causes this sudden rejection of food from my gut? It doesn't always happen after every meal or drink but often enough to make my life awkward? As I understand it the valve in my gullet that is designed to stop the food coming back up is damaged, it allows food I eat to go down and mix with the digestive acids that are in my gut and if as in tonight's mixture the mix aggravate' s the gut  I end up with heartburn and reflux. It is trying to eject the food rather than digest the food. I suffer pains in the chest an awful taste in my throat and feel crap. I have had a few burps accompanied by the acid/food mixture coming up into my mouth. All together an unpleasant experience but one I have learned to live with. I am dog tired but dare not lay down and try to sleep because the lump in my gullet may come up and say hello.
Evidently people over fifty like me are more prone to suffering from a hiatus hernia and evidently there is not a lot that can be done about it. Tablets to reduce the acid and anti acid treatment such as Gavescon and peptic either in liquid form or tablets. It seems as if it is fire fighting rather than cure is the order of the Day. I won't give in to it I know some foods are more liable to make me suffer, I could give them foods up but I don't always suffer so it seems pointless trying to second guess. I just carry on regardless and treat it when needed and other times when I get no heartburn or other reaction I tend not to notice at least unroll the next day. If I was a car the mechanics would describe the problem as an intermittent fault. I am feeling less bloated now so hopefully I can get some sleep. Night folks.

Tuesday, 21 April 2015

Early to bed late to rise

I know all my life I have gone by the early to bed early to rise makes a man healthy wealthy and wise saying. Last night I proved it to be totally wrong. I was in bed very very early for me. Eight thirty be precise. Now that is early! I read etc and went off to sleep and woke this morning at seven thirty feeling crap. I eventually got up at twelve forty five and have been feeling wobbly all day. Tonight still awake at eleven thirty admittedly I am writing this in bed but you Mark my words I bet I do better tomorrow even though I have not go to bed so early.

Friday, 10 April 2015

hit a man when he is down

I woke up around four AM. Head full of snot and unable to breathe even with my sleep apnea mask on. So finally at 4:31 I am posting about the early morning antic of an insomniac on Facebook. Since then I have coughed sneezed and wheezed and whilst I don't feel like I have a cold I keep sniffing and blowing my nose. I have had two days feeling awful with constipation I hope this is just a thing that will clear with coffee.

Its now 13;44 as I type and while I keep sneezing with great gusto I feel much better but very tired me thinks a sleep is in order but I need a late lunch first I AM STARVING. That I hope is a sign I am ok, dont they say feed a cold starve a fever

Thursday, 9 April 2015

been in bed all day

Well I spent some time in the bathroom, quiet a lot of time actually. I had hoped to get up and head off to Folkestone but my bowels put paid to any plans we had. Why is it my gut rules my life? The amount of times plans have needed to be changed because of my tummy and its decision to teach me that it rules my life. Diarrhoea they say is the fastest thing on earth and pooing oneself is probably the most embarrassing. My MS has wrecked my body and moving fast to get to a toilet in time is near impossible. Hence if I am having problems I stay at home. Today has been a stay at home day. I spent so much time sitting on the loo straining I went back to bed exhausted.
Today is our eldest daughter's birthday and all the kids grandsons came here for coffee and cake. I was in bed when I overheard a conversation my youngest Grandson was having and a question that made us all smile went "why can't we have a proper Grandad? One with legs that work?"  He loves me and often says to his mum can we get grandad some new legs.
Well that was my day, I hope you had a better day than me.

Sunday, 5 April 2015

A funny old day

I Am in bed watching match of the Day . We had an early start today grandson number two came to visit while his mum had her hair done. He arrived and we had slept in. Heather looked after him and I stayed in bed and I slept. I was still asleep when Liverpool v Arsenal started but I did get up and watched most of it with our son. After it finished our son went to his mates and Heather went shopping. I went back to sleep! We went out and grabbed a MacDonald s burger and I have strawberry milkshake. It's a ritual I have it has to be a quarter pounder and chips and if I don't get the milkshake to I feel robbed. Heather does at times sneak in a special if it looks good but the quarter pounder is my default. We don't go that often I think the last time was before Christmas so it's not as regular as it sounds. We got back just in time to be to late for the start of the Voice.  I wanted Emmanuel to win or Lucy. I like the Hip Hopera with Will and Lucy.
I was to tired to have a shower, how can I feel tired after sleeping all night and most of the Day? I am struggling to keep my eyes open. So if this don't make any sense you know why. Montalbano the subtitle programme on channel four was good but by the time MOTD started I was knackered and at the end I wanted to write something. Now I have so good night.

Thursday, 2 April 2015

Best Multiple Sclerosis advice ever. MS

This was the best advice I was given twenty years ago.
A mate said "you can have MS or MS can have you, and I would advise the former"Those words have stuck with me all those years.
KEEP SMILING it confuses people.

Hair gone yesterday exhausted today

I wanted to call this post hair today gone tomorrow but I had my haircut yesterday. Today I have been exhausted! How can such a simple thing as going out in the car driving about one mile getting in the wheelchair being pushed across the road and staying in the wheelchair while my hair was cut and then coming home wear me out. Admittedly we got fuel and took the scenic route home. But I slept yesterday when we got back, I mean I couldn't keep my eyes open and today I came back to bed rather than sleep in the wheelchair. My legs were really thumping before I got into bed and Heather said I was asleep virtually instantly. I am not complaining but this MS malarkey keeps you on your toes. My hair looks good, my dad was bald at fifty with a comb over, I have a receeding hair line and a number two which is short about a quarter of an inch all over. I could have it cut at home, Heather has a mobile hairdresser call but I want they adventure of going out. Sleep become me I am feeling tired again it's just after twelve and pouring heavens hard outside. Night all.

Tuesday, 31 March 2015

Help raise funds for Multiple Sclerosis

I have suffer Primary Progressive Multiple Sclerosis for over twenty years and during that time nothing has been on the horizon for Progressive it has always been Relapsing MS that got the new drugs but now research is underway and needs cash.MS FUNDRAISING

Friday, 27 March 2015

Multiple sclerosis takes no prisoners

I suffer from Primary Progressive Multiple Sclerosis. I have had it in excess of twenty years and although it has won every battle that has been waged I have never given in to its wants from my body easily. I started out being a bit unsteady, at the time I was a roof tiler and that is one job you want to know your sense of balance is the full ticket. Unfortunately I hadn't read the MS instructions manual and ended up being carried in a fireman lift off of a three story roof, that was scary and could have ended up with us both being fast tracked to heaven. Unfortunately a short while later the guy who carried me, he died in a diabetic coma. Diabetes is a killer and took a true mate. I had to start using one stick at first then two this the progressed to crutches then a walker and finally I am in an electric wheelchair. I have had a scooter for over fifteen years because it made life easier at first then became an essential bit of kit if I wanted to go more than about fifty feet from my front door.
This week has been tough because we have had visitors. They used to stay at the house but now book in to the Holiday Inn. Of course I can't keep up with them but I certainly tried. I won't eat out anymore my hand to eye coordination is shot, I end up wearing food. We ate in and had trips out but even that took its toll and my bowels played me up leaving me bed bound for a couple of days. They headed off home earlier this morning and it took them over eight hours to get home to Lancashire. I have hardly moved all day TV or computer has been my entertainment. My MS has said no to even crossing the landing and now I am in bed and a painkellered up sleep is next on the horizon. I have had a great week but I don't think that the next few days are going to be up to much. Never mind Easter is only a few days away now.

Over done it this week

MS has a sneaky way of cutting me back down to size. I have had a great week with our friends visiting I have done a bit more than I would normally do and now they have been in and said their goodbyes I actually feel exhausted. As I said the ms gave me just enough energy to get out and about with the. Admittedly I took extra painkillers and my bowels messed up but we have gotten through to now and I feel knackered. Our daughter has just been in to drop the car back she borrowed our car tonight and when she left she asked am I OK. I am not my usual cheerful self, my body needs rest and now I am in bed can I sleep? Maybe I need a few games of Candy Crush. Night every body, let's hope I win.

Monday, 23 March 2015

Multiple Sclerosis good days and bad days

Often people have said to me oh you have MS you get good days and bad days. They say it as if I just get the odd day feeling a little below par and the rest of the time I am running around. Like a spring lamb. I wish. Yesterday we went out with our friends, we had a fantastic time driving through the countryside stopping so Heather could take some photos of the actual spring lambs. We had coffee in Whitstable and a steak dinner when we got back.I haven't mentioned the struggle to get in and out of the wheelchair the discomfort I endure all day everyday. No it was a good day.
Today has been a complete contrast. Unable to get out of bed today, I slept most of the Day, waking to drink squash and take some more painkillers. This must be a bad day. A monumental effort to get from bed to wheelchair and an ever more monumental effort to get from wheelchair to toilet. Heather administering an enema was great fun. It took three of us to do that. Our friend's run a care home so are used to  it but they are on holiday not quite what they had come away to be doing. The enema never worked oh joy of joys. I am back in bed again Now thinking today's a bad day and even yesterday's good day was not exactly what I would call good. Yes my good day consisted of doing good stuff but I wasn't exactly good just a little less bad. So I am going to answer the next person who mentions good days and bad days with this "no I have bad days and some really awful days" Good days, if only I knew what they were.

Sunday, 22 March 2015

Wonderful Day

For someone who has hardly been out today has been a big deal. We have friend's visiting at the moment and they took us out to Dover we ended up back at the National Trust tea rooms a South Foreland and ate steak and kidney casserole. The shortbread was delicious. Then we followed the coast road back to Margate. A fantastic day was had by all.

Saturday, 21 March 2015

Indigestion wakes me up

Three fifteen and wide awake. Blooming indigestion burning in my chest. I had taken my sleep apnea mask off about an hour earlier so to go with it I had a dry sore throat  from snoring that coupled with the fact of  only two hours sleep I am not doing to bad. It's not all bad I have got to use up my lives on candy crush!  Heather has just made me a cup of tea, love her she saw the light on and comes in to check on me. I could probably go back to sleep now but sheer bloody mindedness won't let me. Indigestion ain't beating me, I will stay awake to spite myself now, I am that type of guy. We have friend's visiting, they are staying at the Holiday Inn the fact I am exhausted will make for an interesting day tomorrow.  Well an interesting later today is more precise.  By the time I am up and showered all will be fine!
I take landlords for the reflux/indigestion plus some other stuff before meals and peppermint oil yet I still suffer. Gavescon tablets and liquid work but recently my GP prescribed Peptac because it is less expensive than Gavescon. It goes right through me  and for someone who has mobility issues that's not a good combination. Oh the joys of Multiple Sclerosis, when I get better I will write a story about it. I still wake up sometimes thinking I an OK, just that fleeting moment and then I remember, I can't walk, I can't even get out of bed unaided but for that nano second I had forgotten. The joys of life with primary progressive Multiple Sclerosis. Mind you some mornings I wake up exhausted, I explain to Heather I was running cross country or climbing up on a roof  in my sleep. She just looks at me and gives me that knowing smile. Oh well I must have another life on Candy Crush by now. Wish me luck I got down to only needing one jelly earlier.

Sunday, 15 March 2015

Catheter change makes me weary

Yesterday was no different to normal, I knew I was due for my catheter to be changed and I got slightly nervous. Over the years I have had a catheter I have ended up with trips to hospital it's perhaps  no wonder that it disturbs me. But since having my supa pubic catheter I have had no trouble. Where as with the ureatheral one I had a urine infection virtually every month and even ended up with scepticemia and was very ill and hospitalized for several days, the supa pubic catheter has been fabulous. No trips to hospital no infection to speak of so why do I still get nervous come time to have it changed? I put it down to  nerves. I wouldn't have said I was nervous but since my MS has got hold of me I am a nervous wreck.
You must have heard the joke "what lays at the bottom of the sea shaking? A NERVOUS WRECK" well that's me nowadays. I can't help it when you have had as many mishaps as me, I can fall over just because of a draught. My knees are black and blue from my last fall and a few other places to. So maybe I deserve to be a little nervous. I tell myself to man up, it'll be alright. But I am exhausted by the time the district nurse's been. It all went straight forward, no problem. But I slept all afternoon, knackered doing nothing and today I have been pretty useless as well. I watched some footie on telly but I can't say I remember much of today either. It's just passed me by. Blooming Multiple Sclerosis it's not just my body it's wrecked my mind is buggered as well.

Thursday, 12 March 2015

Catheter being changed tomorrow

What an easy thing ! One phone call makes all the difference. The district nurse's are busy, rushed off their feet in fact so I always try and stay home when my catheter is due for change but last time they didn't come unroll ten days after the due date. This time I said sod it, it was in the book for yesterday and I had stayed in by today with the chance of a bacon sarnies I was out the door like a whippet, well almost if whippets can control a wheelchair that is. I went out had said Santos came home and was sitting in the dinning room contemplating a nap and the phone rings. District Nurse and she is coming to change it tomorrow. SIMPLES as that meercat would say

Tuesday, 10 March 2015

Day feeling off my game

I couldn't put a finger on it but I have struggled to get through the day today. I have not been out and I have just sat and moped all day not actually feeling sorry for myself but I just wanted leaving alone. Now I am in bed I feel like crying! Don't know why but maybe I am coming to terms with the fact the trip to Kings hospital was a waste of time and nothing else is on the treatment front. Maybe up my antidepressant dose after cutting it back down. I hurt as well. After my Madonna impersonation my arms have ached my hips hurt and my shoulders are very painful.
I don't know what it is but it wants to go away.

Monday, 9 March 2015