Wednesday, 28 May 2014

I cant do a selfie

Me in my electric wheelchair

Monday, 26 May 2014

Pancreatic cancer vs MS

I got off the phone to a good friend yesterday who had just returned from holiday. He went to visit a friend in the United States before he set off on a whistle stop tour of America. All in all he was over their six weeks. He knew the friend had just been newly diagnosed with pancreatic cancer it was one of the reasons for starting the tour from there. The phone call was to check how I was doing and also to gloat over his fantastic holiday. He deserves it he has just retired and is spending his kids inheritance. Well he mentioned his friend in the US in the six weeks he was away he had died yep gone. It took less than eight weeks from diagnosis. Well the story is sad but the reason for it is this. We are not immortal, this isn't a practice run. We only get one chance to do life. You never get to know what's round the corner so go for it. I had no way of knowing I was to have Multiple Sclerosis in later life. I have no regrets but I sure as hell miss being able to walk barefoot in due covered  grass as the Sun rises and hearing the dawn chorus as I do it. My MS has taken stuff away but I cope. What I hero I hear you say. No I am not writing this about me I am writing it for you. To get you to let go and grasp life we, none of us can tell the future so live and laugh for this is yesterday's future. Have a good day. Don

Saturday, 24 May 2014

Whelks Love em or hate em?

I have eaten whelks since I was knee high to a grass hopper. They are something you like or dont. I eat almost all seafood, in fact I cant think of anything I wont eat but  I expect there is something out there that I do not want to eat. Yesterday my mate and local vicar Patrick went to Whitstable Fish Market and bought a gallon of freshly cook whelks evidently still warm and still in their shells. He like me love sea food the last time we got together with Stuart another seafood aficionado we ate a gallon of jellied eels between us. So what did I do with these whelks I ate them for my tea today with some freshly baked crusty white bread from Aquinis Continental Bakery I live close to the Bakery  and have known their great bread for near on thirty years, our daughter ever used to have a Saturday job there twenty years ago. So fresh bread fresh whelks and a full tummy.

Thursday, 15 May 2014

Wheelchair Service Today

Well I was sitting here the other day and the phone goes, I  answered it as is my wont and was greeted by a cheerful woman. Hmm this is unusual me thinks. Well it turns out to be the Wheelchair people and they want to book an appointment to come and service the wheelchair, the same one I told you about in Wheelchair Whoopsie. Can I book him in for tomorrow? she says to me now this is where I was doing as I am told. My wife Heather had said if anyone phones and wants to come and see us tomorrow tell them no. So I was on safe ground when I says to the aforementioned cheerful woman nope I won't be here I have a hospital appointment to see about a camel, but I didn't know about the camel at that time (I just put that bit in for dramatic effect) so far so good. Ah says cheerful woman I wont send him when your not there how about I send him Thursday? OK says me and we part company with me knowing he is coming Thursday and her knowing I am expecting him on Thursday. All sorted filed and done. Wife walks in and says anyone phoned? to which on a normal day I would have looked at her with that quizzical vacant look and said no I don't think so. But this time I remembered and said yes the wheelchair mans coming on Thursday to which she replies what time AHHH I knew the answer to this I DON'T KNOW I replied.
This evidently was the wrong answer as I found out I have been in doors all day waiting for the wheelchair man and she has been out eating salmon sandwiches and drinking coffee with her aunt and uncle which because I had forgotten about it and invited the wheelchair service man to come and see my wheelchair I couldnt go and join them. Moral to this story is get wheelchair people to phone back when your social secretary is home.

Multiple Sclerosis Nurses great appointment with a camel

Hi World! I just wanted to applaud the NHS and the MS Nurses in particular. I had an appointment with one of the specialist MS nurses yesterday at Canterbury Hospital. I love Canterbury I have been going there since I was a young pup and some how at the age of about three or four I decided to help my mum and dad by chopping some firewood well it resulted in a stay in the children's ward and my left thumb tip being sewn back on. I had a great childhood growing up on a farm so  don't complain about my parents leaving a sharp instrument around everything on a farm is dangerous I could have sawn myself in two with the sawbench had I been able to start the tractor and connect things up.
Back to the MS specialist nurses. They are fantastic! I have had MS for over twenty years and before the specialist nurses everything had to go through the Neurology Consultant but yesterday he was on hand seeing his patients and two MS nurses were holding clinics in adjacent rooms. I asked a question that she couldn't answer and she went next door spoke to the consultant and hey presto I  got my answer. All in all I had a great appointment she is changing my medication to see if I can get better movement and told me about the next alternative if the tablet change is unsuccessful. She is also going to recommend I get a Camel. I like the idea of a pet camel but this one is an inflatable one to get me up from a fall. I looked on google and have watched videos on riding a camel in the desert but eventually found this CAMEL INFLATABLE PATIENT LIFT
I must admit I was rather looking to something akin to a ship of the desert that I could have ridden on Margates sands but the inflatable lift looks more practical. I have had a few falls recently and its difficult to get me back up off the floor we have had to call our son to come and rescue me. So that was my day at Canterbury Hospital out patient Department. We rounded the day off with a trip to Blean Woods RSPB reserve

Tuesday, 13 May 2014

Curry Controlled Diet

I just saw a dieting advert on telly and whilst I wasn't really  listening I did prick my ears up when I thought I heard a curry controlled diet. Heather said no the said calorie controlled diet. Well by now we are both paying attention and the advert finished with the girl say she was going for a curry. So maybe there is such a thing as a curry controlled diet. Years ago I would have been up for that one but of late I am suffering with spicy food and greasy food. I have mentioned on here before I suffer with reflux and take super tablets called Pantoprazole which reduces the acid my tummy stopping the acid reflux where your dinner wants to come back and say hello. I am not sure if this acid reflux is a Multiple Sclerosis thing or a family thing I cant blame it on Heathers cooking because the worst thing is pastry and I have always liked a Pukka Pie or two but for the last few years meat pies mean indigestion. I have lived on Gaviscon for the last few years, mainly tablets because I could carry a tube all the time because indigestion can attack anytime. I have now cracked it. I phoned my GP and had a chat with him saying that things were getting worse not better. He recommended I take some spearmint tablets half an hour before eating my evening meal. Well cutting to the chase they are working a dream, no more rumbling tummy during the evening and no more shortness of breath when I get into bed. I have said in previous posts about my dad always sucking Rennies and both my brother and sister suffering from reflux as well but I am sure they like me wont be doing the Curry controlled diet anytime soon. Do you fancy the curry diet?

Monday, 12 May 2014

Fatigue with Multiple Sclerosis is a funny old thing

Saturday was a great day bright sunny but a bit chilly. The morning disappeared in a flash but lunch time we grabbed a sandwich and decided if we didn't make a move the afternoon would go the same way. Heather got me into the car  grabbed the camera and we headed out for an adventure. On the way we called on two friends and they were at a loose end so we all headed out. We have been trying to locate a RSPB reserve at Blean Woods. You know how it is we say we are going there and never look at the map if we find it its a bonus the drive is the real reason  we are out. Well we headed out towards Canterbury via  the woods at Herne Bay. We skirted Canterbury drove past the end of the road to the reserve so I have just learned from google maps. I wonder if I can rember this for the next time we try and find it. Well we knew we had missed the reserve so headed on towards Whitstable. We turned off before Whitstable and got lost and found our way again when we passed the farm where we had stored our caravan years ago, strange how you can be lost and yet know where you are!
         I knew there would be some lambs at Graveny so headed that way when we came to the next signpost. Sure enough we discovered sheep and lambs but I never did take a picture all day so I wont be putting any soppy lamb shots on this post. I was now on home turf when we were first married we set up home in Faversham and I was born a couple of miles outside of the town lots of years ago. We had a wonderful ride round and I showed our friends the farm where I was born and where I grew up. By now we were peckish and I directed the way to Crispins Chip shop in Teynham were we sat in the car park eating fish and chips watching a family of Sparrows dart in and out of the hedge just in front of us. Well we headed back towards home after this and taking the scenic route finally got home about four hours after we had first decided to go on an adventure. I struggled to get out of the car and into my wheelchair but thats not unusual. I knew I had been out because I was feeling tired but all I had done was sit in the car. Well we had some supper and then an early night. Here come the funny bit I went straight to sleep and soon Sunday morning comes around. When it did I was knackered I could hardly move and after a cup of tea drunk while hardly awake I rolled over and called Sunday off.
I eventually reawoke mid afternoon but couldnt get out of bed my body didnt want to play. I lay there for a couple of hours watched the Grand Prix and eventually got out of bed but my legs which dont work at the best of times were not going to play. I had been out, all I had done was sit in the car and take in the view but my body was behaving like I had run a marathon. I dont feel great today but writing yesterday off was the price I had to pay for a ride in the country. It was a price I was happy to pay but why should my body shut down after just a few hours doing something out of the ordinary. Multiple Sclerosis is a fatigue based disease but why should sitting in the car for a few hours enjoying the views wear me out so much? Well I have had Primary Progressive Multiple Sclerosis for over twenty years and I think I manage my fatigue well. I know that if I am going to go somewhere or do something I need to manage my rest, I will nap before going out or if out will sit somewhere quiet and close my eyes for half an hour. I have never sought advice on managing fatigue but this morning I went to the MSSOCIETY website  and one of the most memorable thing I read was this :- Fatigue in MS is not just an ordinary tiredness, like you might get at the end of a hard day's work. It's as an overwhelming sense of tiredness that often occurs after very little activity.
                 I knew this because after twenty odd years of managing my MS one thing I do know is I can get tired at the drop of a hat but why does it occur?  The MS Society have written loads of articles on fatigue so I am not going to reinvent the wheel but I will say I am no nearer understanding why, but I do know I manage my fatigue my way and that you need to find  your own way to handle your MS. Help with how you can do that can also find lots of videos on YOUTUBE

Sunday, 11 May 2014

Disabled comedian at the Fringe

I just read an article on the font of all knowledge the BBC website about a disabled comedian and how he copes with people's awkwardness at talking to him. He uses a talky thing like Stephen Hawking and often people see him writing on the key pad think he is deaf and write their replies to him, he just lets them carry on writing it saves him explaining. The best bit about it was he describes people as disabled and not yet disabled, well you never know what is round the corner I never got my Multiple Sclerosis until I was near on forty. . He is campaigning along with Scope to make people aware of disability and the fact that not all disabled people are in a wheelchair.often you cannot see they are disabled. One funny bit was were he said about the not yet disabled being blind to people with disabilities and then adds wouldn't that be ironic. I don't suffer from people feeling awkward around me I go out of my way to make them feel awkward. I used to be one of the not yet disabled so I have seen life from both sides now ( a good title for a song) just because I am in a wheelchair don't change me. Other than the obvious fact I can't walk or run swim or jump anymore I am the same person, maybe a bit more cynical but the same. No forget the last bit I am a whole lot more cynical.
So if you read this and you are one of the not yet disabled good on you go for it live life to the full and don't behave like a miser. Enjoy the wind in your face run barefoot in the morning dew because one day you nay wake up and never be able to do those things again. If your disabled and can't do those things TOUGH I can't do them anymore either.

Friday, 9 May 2014


I don't mean Frank Spencer from Some Mothers Do Ave Em fame type of way, no I am talking about me. I have not been out much and the other afternoon decided I would go and see my neighbour a few doors along. I negotiated the front door and the front gate and headed four doors down and he wasn't there. So after banging on the front door and deciding no one would answer I thought I know I will have a quick trip round the block. That was my first big mistake, Heading down the hill I stopped and wondered how to negotiate the camber on the path, here come my second big mistake I carried on deciding the camber would be OK. WRONG seconds later I was toppled over and laying still in my wheelchair sprawled across the pavement. As I lay there wondering what to do a young lad rushed over asking am I OK well I clearly was in some sort of a predicament so a quick calculation and I asked him to go tell my wife to come and rescue me. So having sent my only source of help off maybe never to return I resigned myself to laying there for some time. How wrong was I? Quite a crowd appeared from nowhere. A nurse in uniform a large chap a not so large chap and a couple of other ladies all speaking at once and asking stupid questions like "are you alright" ??? How stupid is that to ask a chap lying across the pavement with a 72 kg or 11 and a half stone electric powered wheelchair on top of me.
Well about this time the young lad appeared back on the scene and he was accompanied by my wife who had obviously been to the same school as all the others and she immediately asks "ARE YOU ALL RIGHT" stupid woman NO I AM NOT me thinks. About now our son arrives having found his shoes. He takes charge immediately untangling me from the grips of the extremely heavy wheelchair and gets me to my feet checking for broken limbs in the process. He held me on my feet (I cannot stand unaided any more) and directed the two different sized chaps  as they righted the wheelchair. I was reunited with my battle scarred wheels. Said good bye to all those kind enquiring people gave my thanks to the young lad and headed very embarrassed for home

Monday, 5 May 2014

Sun shine and chilli

I went to our grandsons birthday party yesterday and we managed to eat in the garden. Jacket potato and chilli very nice. I joined in with the children as they played football well I shouted encouragement and I was eventually allowed to do a throw in, not as easy whilst sitting in a wheelchair as I had at first thought. The hi lite for me was the Pinata which I was wheeled over and allowed to whack with the stick. The children eventually managed to free the sweets and I was delighted to sample them, I dont know how this ritual ended up on our shore but it provided some fun for both children and adults alike here iis our daughter trying to smash the donkey pinata.

Saturday, 3 May 2014

Stand Up Paddleboard Stone Bay Broadstairs

Have you seen these stand up paddleboards I never knew about them until I saw a picture on Twitter of Beach Huts at Stone Bay. I am going to strap two together so I can go out paddleboarding on my wheelchair  unfortunatley it will have to be renamed as a Sit Down Stand Up Paddleboard.

still in bed

With my son being taken to hospital last night and not getting to bed until 3:30  I am understandably feeling tired today, I am still in bed and not maiming to get up anytime soon. My MS rebels to things like that.As a youngster I could stay up all night playing cards or whatever but that was pre Multiple Sclerosis days. MS is a funny beast, I have primary progressive MS which means no permissions just a continuous decline, yes I do get good days but the bad days never go away unlike relapsing and remitting where the symptoms cankmdisappear unroll the next attack. So a duvet day for Don. 

I am in bed waiting

Our son has been diagnosed with a heart problem and is awaiting an appointment to see a specialist. He has had another funny turn and is in A&E.My wife and daughter number two are with him and daughter number one has been tasked with getting me into bed. I doubt I will sleep unroll I get some news so every possibility of it being a long night.