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.