Tuesday, 4 July 2017

Mental health services in crisis Magic Money Tree needed

I listened to radio four this evening as I waited for Heather to get fish n chips from Holly lane chippy. It was a program about the recent deaths of patients under care of the BUS mental health services. There were interviews with parents care givers and all manner of associated people. All had the same message. The service is broken, under funded and in chaos. I don't use the word chaos lightly, I mean it in it's full meaning of the word. Several different people from opposite ends of the country and I am saying North South East and West plus central England came to the same conclusion, the services had been promised more money more staff more beds, in short more of everything and nothing had materialized. Not ever over astounding periods of time.
One nurse had left recently because she was overwhelmed with her own inadequacies and her manager tried to say since her leaving many changes had taken place. In weeks that is most unlikely, she left because the system was broken but the manager in his best manager speak tried to gloss it over. Parent of youngsters with their whole lives ahead of them spoke of avoidable deaths. Bad communication failings to assess and the NHS releasing patients because they had no beds, and these patients went on to take their own lives. And this wasn't isolated instances it was widespread!
Both Cameron and May have give lip service to Mental health but if these deaths and abuses in care are to end the Government needs to stump up some serious funding. Money that is ring fenced for the mental health services, not cash that can be plundered to make up for underfunded services elsewhere in hospital. This has happened time and time again. Government s are masters at slite of hand when cash is concerned, they can announce new funding many times making any number sound greater than it actually is.
I heard a very good analogy yesterday, the person was offered a raise and a promotion for arguments sake a 1.50 when the next discussion came 1'50 became 100 and then the actual job was to pay 50 three slites of hand and the person who had been offered the promotion said no and said "smiles and kind words won't pay my shopping bills"
The Government work in the same way, they announce new money three times but only allocate one third of what people think is being offered.

Saturday, 1 July 2017

March in London People's Assembly Against Austerity

Yep a groundswell of protest after the re-election of Theresa May and her band of no hopers.  The country had a perfect chance to vote goodbye to the Tories and the nasty vindictiveness of austerity. But not enough people wanted to vote for change so we got change in the form of a weak Government propped up by the DUP. And another billion and a half on the national debt, so much for an NHS magic money tree not available to give our over worked and under paid nurses a pay rise. Still so long as we have a coalition of chaos the Tories can keep milking the system and the richest can keep getting richer. The rest of us can tighten our belts another notch and head on down to the food bank.
Brexit is still a farce, Theresa May has drawn red lines in a pretty pattern and the negotiations cannot cross those lines. The trouble is that Europe knows she is a dead duck PM and will not negotiate with her and she knows that they know. Which is going to make things difficult if not impossible until we go back to the poll's go another election. Even if the Conservatives elect another leader he or she will be in the same boat the EU are holding all of the aces until we get a proper government.
So the Tories need both a new leader and to win a thundering majority. I can only see one out of the two happening, if the choose the wrong leader they may not get a chance at getting back into shape before 2030, Gove and Johnson are no the unelectable and I don't see anyone else actually wanting the job, at the moment it is a poison chalice. I know someone has to take it but they stand no chance of actually becoming Prime Minister.

Wednesday, 21 June 2017

Hot weather wipes me out

I am so lethargic in this hot weather, I am sitting here with a fan on and all the windows open. Today is the first day I have managed to create a breeze through the house since this mini heatwave has been with us. Sleeping with the windows open and the fan on last night was strange and I woke a couple of times thinking the sound of the fan was my sleep apnea machine working overdrive! Multiple Sclerosis is a strange beast some days I actually feel good but mostly I am just lethargic and sleepy. The heat seems to get under my skin as I type this I have the feeling of hives under the skin on my legs and fingers. Still could be worse I could live somewhere like Qatar where it is 47degrees as opposed to 27 here. 😅💦
Thats me done for now I am finding it hard to type because my fingers feel like sausages and these few words have taken nearly half an hour to type and I am now exhausted and need some ZZZ's


Sunday, 18 June 2017

Constipation is serious business

I phoned a mate this week and he told me he was suffering with constipation. He had never had this problem before and explained he had at first thought he had a twisted gut because the pain and discomfort was so bad. He managed to get an emergency appointment with his doctor who diagnosed constipation and the extreme pain due to an existing hernia being aggravated by the mass of the constipation. As I was talking to him I personally was into my third day of trying to pass a motion. I have suffered with slow bowel movements all my life.
People are funny when it come to bodily functions! Every single one of us on earth has to pass poo most days yet no one discusses this most natural of things. I personally have a toilet regime which involves logical (a stool loosener) and anal irrigation. My MS has wrecked what muscle I did have and the water help me empty my bowel but sometimes even that proves to be unable to make me go, as I said three days of trying is exhausting. As I write this my body is still not recovered two days after going.
The reason for writing this post is simple, don't suffer in silence, there is lots of help available. Speak to a chemist go and see your doctor, if he can't get you sorted he can put you in touch with a continence nurse. I have been with my nurse for over ten years and she had been fantastic, making my life bearable.
The other thing I want to say is I recently spoke to someone suffering diarrhoea. Don't not take medication to stop it Imodium is a marvellous drug that stops diarrhoea in its tracks.
Poo is not the most colourful of subjects but as I said everyone has to go and if you are having problems help is at hand, don't ignore it ask for help!

Tuesday, 23 May 2017

New pain relief

I suffer a lot of neuropathic pain, I understand that it is quite common in multiple sclerosis. I have tried all sorts of different medication to alleviate the pain but nothing seemed to work. Amitriptyline caused side effects of the bowel and when you only move at snails pace you can imagine the side effects without me being to tragic. Gabapentine gave me hallucinations, I saw aubergines floating in the hallway and they had a red halo around them, I was able to get around with a Zimmer then and evidently I stood at the bottom of the stairs watching them before getting on the stairlift waving to them. Needless to say Gabapentine is off the list of medication I can tolerate.
I have now been on a close relative of Amitriptyline for almost a month and touch wood it offers some relief during the day and in the evenings I take a couple of Zapain to take the edge off before bed. I am lucky that once asleep I don't wake even if we get an earthquake!

Lets June 8th be the end of May

I saw this first on Twitter and now having done a google search you can get a Tee Shirt with it on.
if you want one google it #VoteLabour
Vote on June 8th

Wednesday, 17 May 2017

Vote Labour Tories have doubled National Debt under austerity

Yep I know they will say whilst they were running the country they need us to have some austerity so they could spend even more running up the National Debt. WE JOE PUBLIC have suffered hospitals and social care in turmoil Nurses being condemned to use food banks and the break down of the nations infrastructure. Local authorities themselves are cutting services because the Government appears to not to care about little old ladies unable to go into social care or have home help. I am going to be voting labour on June 8th

Tuesday, 16 May 2017

Tories plan 24 A & E A&E Closures

Just read this on Twitter 24 A&Es earmarked for closure. If the Tories get their mandate the NHS will be decimated. Save Our NHS. Vote

Wednesday, 10 May 2017

Cuts to disability benefits force me to vote Labour


Tonight I read online that Theresa May refused to rule out more cuts to disability benefits. That was the straw that broke the camels back for me. The roll out of PIP is a shambles and she refuses to acknowledge she is actually causing people to die because the scheme is rubbish. But hey ho my one vote won't change anything But if all of those that dont vote actually voted what a difference it would make
Please Vote of June 8th

Sunday, 7 May 2017

My Multiple Sclerosis is getting worse

Since Christmas I have noticed a marked decline in my movements. My legs are getting tighter and standing has become very difficult. I have had a couple of fall's because of my inability to support myself once standing. This has become such a problem that both me and my wife have had to say hands up we are not coping! So at a recent appointment with the MS physio we said we are in difficulties. So earlier this week an OT and a physiotherapist called to see us. He recommended a standing and raising aid, commonly known as a SARA (taken from the initials) and not named after my sister Sarah, see prefers to be called Sally. Well I have a SARA arriving this coming week so I will keep you posted.

Wednesday, 3 May 2017

Disability aids and adaptation to help you.

I remember years ago looking at the New wheelchair sat in the hallway with a mixture of both disgust and terror. The terror was the reality that I really was disabled. And the disgust bit was I couldn't believe that my own body had turned against me and that thing was now how I was going to negotiate the outside world. Until the arrival of a wheelchair in my life I had welcomed every aid and adaption with open arms. Sticks or crutches walkers and even a scooter hadn't had the shocking effect on me as that wheelchair. I made excuses not to go out I refused to join in I stayed indoors, the world outside our front door could and would get on perfectly well with out me cluttering it up sat in a pile of scrap metal.
This went on for months and then I read an article about someone else who withdrew from society because of disability. It was that article about how someone else saying that by not going out this person was depriving others of her wit and company and it was selfish of her not to share her life with her friends. That struck a cord with me. I had always told other to use all of the tools available to let those tools help them to enjoy life to the full. Shortly afterwards we went o Portsmouth, our son was about thirteen and he was so proud pushing his dad round. He also had and still has a wicked sense of humour and took great delight letting me go down a steep slope and on another day pushing me through every puddle as we got soaked returning to the car. I rained so hard I was sitting in my own swimming pool and we laughed until we cried, you couldn't see the tears for the raindrops but it suddenly meant inclusiveness, for all the family.
Around that time I can remember telling a lady I met at Westgate she should embrace all of the equipment that enables her to be with her family, she was disabled and had let her family go for a walk along the prom whilst she stayed in the car park not wanting her son's and grandsons to be burdened with an old lady in a wheelchair.

Monday, 1 May 2017

Depression only exists in the mind

Try telling my body that! When I am depressed my body is depressed to.It knows I am feeling crap and every ache and pain rises up to have a dig. That pain in my shoulder that I normally shrug off as it's only a frozen shoulder suddenly really hurts like mad. A headache that normally goes away with drinking more water is splitting my skull in two.  I have to take more painkillers and then become constipated. Everything makes it's presence fealt and then some! A comment is magnified and develops into a cross word which in turn develops into a war and peace argument. That in turn feeds the depression and the endless spiral goes on. So when I see smart alec quotations on the net l save the on my pinterest account. When I am feeling better they can be a source for raising my spirits but when I am depressed they feed my mind with negativity and my depression grows. So when you read things like Depression only exists in the mind don't believe it it affects your body as well. People over eat are some scar themselves others starve themselves others drink they are physically expressing the emotional state. Others have to live with that expression. People left behind after a suicide or overdose or kids living in a home where parents are abusive toward each other or towards the children, that's not inside the mind it is real and the results of depression upon those around  last a lifetime
Victims of ptsd get counselling kids from a home where mum and dad knocked each other about go to school not knowing how to express their emotions and often slip through the gaps. I don't know what can be done about mental health but I do know doing nothing is not an option.

Saturday, 29 April 2017

Indigestion strikes

I was fast asleep minding my own business and now here I am wide awake writing this! Bloody indigestion. It hurts, when I came to bed Heather helps me and she asked what's up when I was short of breath. It was the paela I had for supper, chorizo is not to be messed with unless served with a sauce containing antacids if you suffer from acid reflux. Now barely two hours after my first dose of peptac,suffer I am wide awake with chest pains all because we ate late and had spicey food. My own fault I should have known better. Thank goodness for Peptac.

Monday, 24 April 2017

Eye Drops for conjunctivitis

I think I must have conjunctivitis my eye is sore and cruddy when I wake up, in fact at 3:15am. I was awake with an eye that wouldnt focus on the clock to even tell the time, I had to turm my kinfle on to check and it was 3:15. I have now started on a course of eye drops one  drop every two hours for two days and then every four hours for a further three days. I am one dose in and my eye already feels less fierce so lets hope it clears up and I actually get a good nights sleep tonight. So six quid on some eye drops and no waiting for an appointment with my GP.  My new mantra is dont go to see the doctor every time self medication and ask at the Chemist for minor ailments .
it is scary but well worth doing

Sunday, 23 April 2017

Eye infection

When I woke up this morning my right eye would open and then wouldn't focus. It was like looking through a curtain, everything was fuzzy. Heather said my eyes had bags under them and they were sore. Conjunctivitis? I don't know but a trip to the GP is on the cards.

Thursday, 13 April 2017

One very full day trip to the New Forest and Hythe pier

It was touch and go but I made it. I was up and dressed ready for an adventure. Heather got me into the car at a few minutes after eight am. Not pm. And we set off. Our mate Phil was to do the driving, we collected him and set off on our trip to Southampton, well Hythe to be precise. I managed to stay awake for about five miles and with only one ore two moments awake managed to sleep unroll the outskirts of The New Forest. We used to try and holiday on the Forestry commission campsites a couple of times a year plus as many other breaks as we could manage before my MS put paid to it.
We went down Hythe Pier and watched the train trundle along  to the end. We wanted to see the ferry and were not disappointed. We also saw an Isle of Wight ferry and some cruise ships etc. I must say it was darned cold stuck out on the pier but hugely enjoyable doing stuff I have not done in twenty years. From there we had a walk round Hythe town, it's not a huge place so we were soon heading to Lymington another old haunt. We always used to have fish n chips on the marina there on our last night a long standing ritual. So I had cod and chips in fact we all did, us boys large versus Heathers small. Washed down with a can of Rio and not one chip given to the noisy Gulls. Luckily most of them were pestering other people who had been foolish enough to give in to their vociferous begging. The Gulls obviously remembered us and knew we wouldn't encourage them.
After a few hours touring around old holiday haunts we headed home and once again I was asleep only waking when we hit traffic on the M25. Phil took diversionary tactics and we came though some of the worse roads in Surrey I have had the misfortune to ever encounter. Stock broker belt! Me thinks it's broken axle belt. I couldn't sleep again untill safely back on the motor way. Fourteen hours and four hundred miles later I got back into bed and slept for another fourteen hours but this time it had been in the comfort of my bed and not in my wheelchair. I must say our dat trip to the New Forest was a master piece where to next?

where we parked for some horse pictures

Hythe Pier and ferry to Southampton

Me enjoying my cod and chips

The Pier Train

The Balmoral


New Forest Ponies

Red Jet ferry

Pier Train

Multiple Sclerosis Specialist Physio

I had an appointment at Canterbury Hospital to see the Specialist Physio on Wednesday. 11:30 appointment, we left in plenty of time and still only just managed to get there by the skin of our teeth. It is surprising how much angst a small hole in the ground can cause to drivers and to drivers who are trying to reach a hospital appointment it causes blood pressure to reach boiling point. When we eventually arrived there were no parking spaces but luckily after one round of the car park  miraculously a lady  and small child returned to their car and we got parked. Of course the clinic was running late and no one ended up knowing we had only just managed to arrive at 11:28.
Nothing of great note was discussed but she is writing to see about me having a frame to enable transfers easier. I have mentioned before I am able to fall getting out of bed and that I find my bedside cabinet most uncomfortable when used as a pillow.

Monday, 3 April 2017

Started vitamin B12 tablets

I try and smile and carry on whatever the circumstances. Fall over Smile break my leg, Smile even when I am in traction and it hurts like blazes. After all I am British and it is what we Brits do! Sometime though I do question the great British default of putting the kettle on and making a cup of tea, I actually prefer coffee. My mum and dad drank coffee and copious amounts of alcohol so I filled their lead but that is another story for another day. The reason for this post is my exploration of vitamin B12. Under normal circumstances I just get on with life. MS sucks and a long time ago, over twenty years in fact  My specialist of the time said I could spend all my time chasing the latest diet or fad to  be the latest wonder thing to heal my multiple sclerosis or I could just get on with life.
That has been my mantra, smile and carry on. But what if I have been wrong. Heaven forbid for the first time in my 61 year's I had made a mistake. Is that actually possible? I am a man and men don't get things wrong, I never read the instructions well not until I need to check that they are as good as I know I am at putting stuff together. Sometimes they do have one or two good ideas but most of the time I know better so why bother wasting my time reading those useless things. So back to vitamin B12.
I have been feeling crap for sometime. The people who I look to to help me cope with my MS have over the years have suggested different drugs and I have worked my way through  a long list of things and none have worked but the side effects have been awful.
I have had drugs that have given me hallucinations one's that have given me diaharea others that have left me constipated. I have always smiled and carried on. Well I probably moaned just a little bit but I am a man, a man who has no need to read instruction manuals. But what about reading not instruction manuals but other people. I have read other people's comments about vitamin b12 and inwardly digested those comments. I have read bits on website's and I remember reading a book given to me by an auctioneer about herbal and natural remedies. That must have been getting on for twenty five years ago, time flies when you are having fun!
So years ago I tried all that I could magnesium tablets vitamin A to Zee and some herbal stuff recommended for pain relief that at the time I smoked, honestly none of it worked. And as for smoking cannabis I had given up smoking for several years when I rolled a joint and sat down and smoked it. The first draw made my head spin so much if I hadn't been sitting down I would have fallen down. Bearing in mind before I quit smoking I had been a twenty a day man or more usually rolling my own normally Old Holbourn or Golden Virginia. So the spinning head came as a real surprise. I never tried cannabis again and gave the remainder of it away.  So over my time I have tried pretty much everything but now I am going back over covered ground, I am not aiming to retry prescription drugs and I am definitely not going to be smoking cannabis but natural vitamins and minerals supplements etc are up for grabs. Wish me luck.

Wednesday, 29 March 2017

Tuesday, 21 March 2017

Bacon and brie sandwich at Ramsgate Boating Pool Cafe

Did I mention our son is home for a week from Qatar. He is absolutely overflowing with the place. He loves it out there but obviously it is a different lifestyle to what he had when he lived her in Margate. So this morning we took him out for an English breakfast. I like bacon in all of its shapes and sizes and have said before my favourite bacon sarnies are either the Sea view Cafe at Tankerton or the Boating Pool cafe at Ramsgate. We settled on Ramsgate. I was late up and we were all hungry so the closer that we decided on meant the faster we were going to get food.
The boating pool is on the Ramsgate West cliff esplanade near to Pugins a house The Grange which was his home and is open to the public.
The reason I personally like eating there is the care they put into a simple sandwich. Hand cut proper bread decent bacon although it is only two slices against the three rashers at Tankerton. And a small amount of salad! Wasted on me and my son but Heather ate hers and picked the tomato from ours (she is welcome to it) and they aren't stingy with the brie. The coffee was good and the staff are welcoming. I chatted with the locals as the others ordered and then we all sat staring at the extensive menu, no wonder it is always busy.
The boats were being got ready for the Easter rush and the boating pool itself was being refilled and tidied up after being out of bounds for the winter. They like countless others around the coast are prepared for the summer season lots of places close down during the quieter winter months but I am pleased to say neither of my favourites Tankerton or Ramsgate close during the winter months giving HEATHER and I somewhere to go and now we have the Wheelchair accessible car life is so much easier.

Sunday, 19 March 2017

Home alone But not like the movie

Today has been a complete whirlwind. Our son surprised us yesterday  coming home from Qatar for a few days the only person who knew he was coming was his eldest sister and she only knew because he needed picking up from the airport! So nine for breakfast over two sittings and people coming and going it has been like Piccadilly Station. Grandsons to Rugby another to Football etc etc. So as you can imagine I am exhausted. Well this afternoon the grandsons were booked in for cinema at Westgate, the Carlton Cinema has seats from £2.50 fantastic value. I now find myself at home alone as our son has gone to catch up with a couple of mates and I expect they are watching the Liverpool Manchester City match in a pub somewhere. After the mayhem of earlier I am sitting here with the skiing on the telly but the volume is turned down and I have been left a supply of goodies to nibble on (most of which I have already devoured) As of yet no burglars have tried to gain access  so unlike Kevin McCallister
the unfortunate star of the film I am safe and sound.
And I am enjoying the fact I am home alone it has given me time to recover from the madness of the earlier part of the day and build up my strength for when they all get back in a while. Right
where did I put those earplugs.



Urine dip test kits for Urine infection

I suffer from urine infections and my pee often stinks but whenever I get it tested at the doctors surgery it comes back clear! I am sitting here typing this with a pain in my lower back (kidneys) and I actually smell (how does it smell through my urine leg bag) I just looked online for a dip test kit and Boots dont have them on the website and the only one I  can find in a high street chemist is fifteen quid. So much for shopping locally, I would support the local chemist it the price was only a little more expensive but I can buy online at half that price and have free shipping. Simplex Health is where I am going to get them from wish me luck.


Friday, 17 March 2017

I love Multiple Sclerosis

MS the illness that just keeps on giving. I have had Primary Progressive Multiple Sclerosis for over twenty five years now and I must say in those years I have witnessed my body give up in front of me. Those of you that know me will know I can no longer walk but I do manage the twelve feet or so from my bed across the landing into the bathroom with the help of my zimmer frame. Well I did until a couple of weeks back. I wrote about my fall a couple of weeks back (read about it here) since then I have spent most of the time in bed sleeping! Today was my first day downstairs in a week and I stayed awake which after sleeping both day and night for the previous five days seemed miraculous!
Evidently I look like crap our eldest daughter popped in earlier to see if I needed help getting upstairs and into bed confirmed what others had said even our son who facetimed from Qatar said I looked awfully. So now I am back safely ensconced under the quilt but do I feel tired? No is the answer.
Having slept for days my body is giving payback. I have suffered like this after days of sleeping before. My body feels exhausted but my head won't shut down. I won't take any sleeping tablets they screw with my brain so I am just going to start the last  John Connolly novel in the box set I have been working my way through. Charlie Parker rescued the Day in the last one maybe his luck is going to run out in the eighth book?
At least I managed to get around downstairs in the wheelchair today but going from laying in bed for twenty four hours a day to sitting up the muscles in my neck and shoulders are screaming out to me, even typing this blog post is very difficult so I am signing of and going to read until sleep takes over. Nite world.

Monday, 13 March 2017

Why do I still feel crap

I fell over ten days ago nothing hurt apart from my pride but I still feel crap . I had to be manhandled back into bed by females so should that be renamed womanhandled? Either way I have spent several days in the past week moaping about. Just sitting looking out the window not really caring what was going on if I wasn't starring out of the window I was sleeping. Today and yesterday I haven't even got out of bed, I just slept right through. Today I was going to call the GP but when the phone was engaged I didn't bother. Heather got me some vitamin B12 tablets today I read somewhere on the world wide web that I might be deficient. What should I do see if the tablets work or contact my GP and do bloods etc. I don't know.

Thursday, 9 March 2017

Dismal week even though the Sun is shining

Since my fall on Saturday night I have not how shall I say been feeling the full ticket. I mentioned to Heather one day last week that I was feeling like I could burst out crying and that feeling is still close by. Today I have sat at the back window with the computer on my lap and other than for meals I haven't moved! I picked up my journal but couldn't be bothered to write anything, I did the same with my drawing pad. Nothing seems worthwhile. I have listened to music nearly all day long. I could cry now but can't see the point, what is the point? I just can't be bothered. Maybe tomorrow will be better but I ain't going to be betting on it. Nite world.

Tuesday, 7 March 2017

Not fallen over since November

Nope no floor time for all almost four months and then bang crash wallop I am using the bedside cabinet as a very uncomfortable pillow! Saturday late afternoon I knew I didn't feel well so I got Heather to take me to bed. It is a full scale operation getting my leg braces off and undressed and actually into bed.  But about 8pm. I was feeling a bit better after sleeping for a few hours and when Heather suggested eating I said yes please but I will get out of bed and sit on the chair. It is actually a wheeled commode which is used to transport me when I can't make the crossing of the landing using my zimmer.
I got off the edge of the bed to a standing position using the zimmer, I have a hospital bed so can raise the height to make standing easier.  I stood for a few seconds and the next thing I knew was that bedside cabinets make really uncomfortable pillows. My legs had collapsed under me and the pain was excruciating. Heather got me laying flat but we knew I couldn't get back up. I have no strength what so ever now. So we called international rescue which arrived within minutes. It came in the shape of our two daughters who between themselves and Heather managed to get me from floor to mattress as stress free as possible. They settled me back in bed made tea and departed in about fifteen minutes I thanked them and they told me it's all part of the service. TBC
When I started to write this piece it was Tuesday night as I lay in bed. It is now Wednesday and I am awaiting my brother so this may well get cut short again.
Sunday I took things gentle. Up late at about twelve but at least I was up.  This brought us to Monday, well apart from aching arms and legs from being man handled into bed by the females in my life. I was not suffering any ill effects of my horizontal time in the bedroom. Bruises invariably don't surface until I have forgotten how I got them so at the moment I will keep taking the painkillers and put Saturday night down to experience. Now where are those painkillers?

Friday, 3 March 2017

Multiple Sclerosis sucks

I have had MS for over twenty five years and it has gradually robbed my body from me and my family. I used to be a gregarious individual with a wicked laugh and a sense of humour that was shall we just say an acquired taste. I have fought against my multiple sclerosis at every turn.  Over the years it has gradually ripped my life apart. Now I get about in an electric wheelchair having worked my way through every device which enabled me to keep a sense of independence. My MS is relentless I have the Progressive variety it just keeps on gradually chipping away and won't stop until it has what it wants.  Well it's been a notch since before Christmas and this last few days have been awful. I am writing this in bed. I have been asleep virtually all day. When I did wake earlier  I tried to get out of bed and sit on the chair to eat something.
Great idea but I ended up in a crumpled heap half under the bed using the bedside cabinet as a very uncomfortable cushion. There was no way Heather could rescue me from my new and very uncomfortable situation so she called our eldest daughter who wasn't at home but at our other daughters house. So that is how I came to be manhandled back into bed earlier tonight. I started writing this post yesterday when I was feeling depressed about not being able to get over the constant feeling below par. I know I am never going to feel fantastic but the seemingly endless battle to feel human is taking its toll mentally.
I am always a glass half full type of guy but the last few months I have had my optimism knocked out of me. Endlessly feeling unwell and yet when I get checked I am told nothing there your tests have come back clear. I will phone my GP on Monday but if she suggests urine and bloods again I don't know if I can bear being told I have nothing wrong. That just means more of this and even though I think my antidepressant tablets are the best things since sliced bread I may be needing some stronger ones. I am on the verge of crying as I write this because the realisation is dawning on me this is my future. I have always fought my MS but now I think it is beating me, I don't want to keep fighting I just want to curl up and cry. I said to Heather earlier this week that I could just cry  I thought a trouble shared was a trouble halved but now I have admitted it the genie is out of the bottle. Where do I go from here because I don't know if I have any fight left in me. Now I am crying!

Tuesday, 28 February 2017

Feeling unwell been asleep virtually all day

Last night I wasn't feeling the full ticket, not ill just a but under the weather. It had been a busy day people in and out the wheelchair repair man came and repaired the wheelchair (with a name like wheelchair repair what else did I think he repaired) or daughter called in after netball late evening so it was a full on day and I thought I was just tired! About two AM. I woke up freezing cold but running a temperature. I took two painkillers and settled back down for a very unsettled night.
This morning Heather came in as normal and I told her I was feeling awful and started the Day off with yet more painkillers as well as my normal medication. I decided to stay in bed (I could hardly move) it seemed the safest place. So after breakfasting on porridge I settled back down. Heather woke me a few times throughout the day but I have managed to sleep pretty much all day. It is now 11:30pm. And I have been awake since 7:30pm. I am about to settle back down and no doubt sleep until the morning. What has caused this blip? Was it my multiple sclerosis or a bug? I don't know why I have slept all day but I do know that I hope I feel better tomorrow.

Saturday, 11 February 2017

Watching Match of the Day in bed

It's been one of those days I had a slow start this morning, Heather was busy taking birthday wishes on the phone and I was caught napping when I fell back to sleep. Heather was on her mobile and I jumped out of my skin when another well wisher called the house phone. That's twice this week the phone has disturbed my sleep but I managed to avoid biting my tongue this morning, I am still smarting from the pain that was caused as I was caught napping in the wheelchair earlier in the week.
Heather has been in and out through the day and despite trying I never managed to get to sleep again! Now I am in bed watching MOTD and all I want to do is close my eyes and join the world of nod. So night I am signing off I know the scores of the remaining matches. 

Friday, 10 February 2017

Heartburn and Acid Reflux

Yep I am laying here in bed reliving the food I ate earlier. Tomorrow is Heathers Birthday and this evening we had Chinese for Dinner. Nothing exceptionally spicy but boy am I paying for it now. I suffer with heartburn and reflux but tonight's is painful. I always have suffered as do my brother's and sister. Dad was always sucking Rennies so I think it is safe to say it runs in the family. I have prescription medication every day and also use Peptac which is extremely effective. I used to take Gaviscon on prescription and one day got a telephone call from our GP saying Peptac is the same but much less expensive. Ever since I have used Peptac. Gaviscon is slightly sweeter and better tasting but for that you pay about nine pounds for a 600ml bottle Peptac is around three pound for a 500ml bottle. Which means about six quid more. Now I don't have to many spare six quids to waste, in fact I try not to waste money full stop. So if like me you suffer with indigestion and heartburn save your money by changing brands.

Tuesday, 7 February 2017

I feel armour plated but not in a nice way

It was last Friday that I had the drama with my catheter and here I am on Tuesday and I feel awful. It's like I have an invisible coating just under my skin. Stopping me from functioning properly. Maybe I am developing an armour plate and will be a real live X Man......if only, I can't do two steps let alone repel uranium bullets and as for Xray vision I doubt my Specsaver glasses can pull off tricks like that.
I actually feel as if this armour plate is keeping me from falling apart. My brain won't function on anything for longer than a few minutes. I tried reading this afternoon it did not go well. I gave up halfway down the page having not understood what I had read and I did try I re-read it a couple of times. Answering the phone is difficult I just can't get any enthusiasm to great the caller and whilst I am desperate for the conversation I just fail a couple of minutes in and they ring off. I eagerly wake each morning thinking I will be back to how I was pre Friday and so far I am disappointed.
It seems like that I am moaning but when a post like this takes half an evening to complete maybe I am past being able to moan. No one cares anyhow so why waste the energy I could just sit here and stare at the wall. Sorted that's what I will do sit here stare at the wall and wait for my X-Men talents to take hold , I just checked and the Xray missions not working. Ah well maybe tomorrow!

Saturday, 4 February 2017

Why am I watching come dine with me?

I have been home alone reading the paper and watching TV over the top of the laptop screen. Heather and our daughter have been out shopping and I was home alone, but no longer!! In they come in and over goes the telly no more rugby I am now watching Come Dine with Me. Where do they find these people? I am going to find another TV and see whats happening with the match.
please dont make me

Taking it easy after yesterdays catheter drama

I was exhausted after all the drama of the blocked catheter. Any upset to my balancing act with life with Multiple Sclerosis seems to lead to my whole body going rigid and yesterday was no exception. My legs are the first sign of problems and at times trying to move around in a wheelchair with legs sticking out and as rigid as an ironing board can present one or two problems. I did manage to move after a few hours sleep and actually got into the shower and spend a couple of hours downstairs last night. When I woke this morning my first thoughts were I need painkillers but here we are now at twelve thirty and I have managed without any but I think that may change shortly!! I am sitting here with the laptop and one eye on Football Focus. I have been emailing and on twitter (I love Twitter) and I am now starting to ache so maybe I will sign off and do even less than what I have already. MS is so frustrating people often say GOOD DAYS AND BAD DAYS all I want is some good hours.

Friday, 3 February 2017

Blocked catheter and district nurse

After a fantastic day yesterday I should have known that there would be a price today. I was feeling uncomfortable and like I need a poo. I got to the bathroom and my pants were wet. With a supra pubic catheter I shouldn't be passing water that way. I knew I had a problem. Heather got the wash kit out a container of sterile water to squeeze into the catheter to clear any blockage. Nothing! It was blocked solid. Time to call for assistance, time to call the district nurse's. Heather called the nurses number and within ten minutes she was here. By this time the pain had set my MS off into overdrive and I could hardly move. Getting from the bathroom and into the bedroom was a mission, a real thing of beauty involving wheelchair and lots of pushing and shoving. Eventually I was on the bed and within minutes the catheter change had been done but I couldn't move, nothing for it I needed pain killers and sleep. It's now twelve hours later and I have been in the shower had some dinner and am back in bed after six hours of sleep I did manage to get up and showered my movements are awful but hopefully by tomorrow I wall be better.  Here's to hope and to the NHS  it's blooming marvellous.
Part two.
I was hoping that after a good night's sleep my body would have calmed down. No such luck! This morning I could hardly lift my head. No way Jose! Not a chance of getting out of bed. I slept all day so Heather just left me and did Grandma things teaching bike riding and walks along the prom. Margate is beautiful whatever the weather or time of year. When Heather and I were just together some forty years ago I said I liked Margate better in the winter, no crowds and it seems like you have got all of that seaside charm and beauty all to yourselves. Well there was me in bed and her and our grandson out enjoying Thanets winter wonderland, I was asleep so didn't know what she was up to.
Eventually she returned home and I need to go to the bathroom. I may be ill but bodily functions stop for no one. This presents us with a problem. One large immovable object, me and a landing to cross. Eventually I am in the wheelchair, unless you have ever had legs that refuse point blank to move you will not appreciate just how heavy a single leg is Heather has no need for a gym subscription! And then she has it all to do again on the return journey.
I am still in bed, l have spent the evening watching television and now I am here wide awake and I can hear Heather asleep in her room. Blooming Multiple Sclerosis messes with you in so many ways. It just takes the slightest thing to upset you and you are laid up. I am in a wheelchair all the time but if you can't get out of bed even that little modicum of independence is robbed away by the beast that is MS I don't care anymore, it cannot rob me of anything else. I just go with the flow bobbing about in the stream, sometimes the stream is in full flood and I am bashed about and other times I am in a quiet back water close to the bank but the bank of the stream is so steep I can never get out, I just keep going downstream not knowing what is coming next. 

Thursday, 2 February 2017

Tankerton for bacon sandwiches

It has been cold and miserable since the New Year and I have only had two trips out this year. The first was for a hair cut and shave at the barber's and I was out of the house for about an hour, hardly worth the effort but a very great mate of mine would have described me as looking like an out of work poet, I needed that trip to the barber's! The other trip was to the Boating Pool cafe in Ramsgate. The home of doorstep bacon sarnies, but when I was there a fortnight ago I opted for a delicious Cornish pasty. I doubt it had ever been to Cornwall but it was delicious all the same.
A proper bacon Sandwich
So today the second day of February we went out for a ride in search of the elusive bacon sarnie. The home of what I consider to be the best bacon sarnies is the innocuous looking Sea view cafe on Tankerton slopes. Sat atop the slopes looking out to sea I am sure it harks back to the 1920's and boy do they make a mean bacon sandwich! Doorstep cut brown wholemeal bread full of seeds and stuff three rashers of thick bacon all washed down with coffee. We sat in the car, it's just to much trouble getting the wheelchair out and it was blowing up a storm so I sat tite and Heather headed out and came back armed with sandwiches. Phil who so often rides shotgun with us on our jaunts out carried the teas and coffee and I can say three happy bunnies Sat munching away letting out delightful sighs.
I love living here in Margate so many nice places to eat but in this post I have mentioned what I consider to be the two best purveyors of bacon sandwiches in the area. And anyone else reading this if you are a cafe owner and think it is good enough to sell rubbish bacon in between two slices of cheap supermarket white bread, think again we drove twenty miles today to get a decent, nah an excellent bacon sandwich and probably passed a dozen cafes. It was because we wanted great food not mediocre.

Wednesday, 1 February 2017

Life on Fair Isles

Anyone see the programme on BBC FOUR tonight about living on the Fair Isles? What a wonderful place one only about sixty people living on the island. They need more people and young people who are going to leave kids. I don't fit into those categories Heather and I have had our children and they are producing their own families. It looked fantastic being there with just sheep and puffins for company but each person who is there holds down numerous jobs. And stuck a four hour ferry tide away from anywhere remotely (no pun intended) built up you are on your own.
Now in my early sixties it seems idyllic but as a twenty or thirty year old would I have been able to cope with all that isolation? I can say yes now because I won't even be able to get there let alone quality for the criteria. But rose coloured glasses are great to look through when you are at my age. I hope people take up the challenge and relocate there, I know that it won't be me.

Tuesday, 24 January 2017

Ramsgate walk in the January Sunshine

You know how sometimes your plans just go out of the window? Today was one of those days! We had got up I had breakfast coffee etc and we planned to head out to Westwood to Primark for some slippers for Heather. As they say the best laid plans etc well we were just putting my coat on and the phone rang. It was Heather's sister she needed a bit of help. She has only just got home from a stay in hospital so off we went and collected our friend Phil on the way because he is good with televisions, her BT Television box wouldn't work so I sat in the car (the wheelchair wont go up her steps) they got on with the relevant chores and guess what? after they were finished we headed out in search of bacon sandwiches. Ramsgate Boating Lake Cafe was the agreed destination. We always start such trips with who wants to go for coffee (silly question but you have to start somewhere) we knew coffee was code for bacon sandwiches and the best ones are either Ramsgate or Tankerton. Ramsgate won.
Summer time photo




I actually ended up with a pasty most unusual choice for me but I had eaten breakfast only an hour before and the bacon sandwiches come with salad and crisps and are doorstep slices of nice bread. Hmm most unlike me but I settled for a pasty and milky coffee. The others decided to abstain and only had coffee making me the piggie but I had to share with Heather she has always said no I don't want anything and then looks at me with those puppy dog eyes until I give in. When I used to do cooked breakfast on a Sunday for the family she would always say no I don't want anything and then eat half of mine so I would always cook her a breakfast but it would be on my plate and she thinks I am the silly one. Well pasty eaten coffees drunk we went for walk. There are some slopes down the cliffs onto the Western Undercliffe stupid name if you ask me. I used to go fishing along there years ago and had varied success but that is another story. We walked back towards the harbour and then in the opposite direction towards Pegwell. We came up the Chine and went through the gardens towards Pegwell Village. All in all it was a very nice walk of about three miles (they both have fitbits  and are in constant competition) I came up against some missing drop curbs so probably travel further than the two of them but I  don't have a Fitbit
This is the path we went down but the picture is about 100 years old

It was a cold but enjoyable walk and I had wrapped up hat gloves and scarf  and the warm January sunshine had made all the difference. Yesterday it was below zero most of the day but today in the sunshine I recon it reached eight degrees in the sheltered spots and with virtually no wind I has a fantastic walk, the first one of the year.
I used to drive down there!!

Sunday, 22 January 2017

Snooker finished what can I do now

Anybody else been watching the Snooker Masters? as I am typing this Ronnie O'Sullivan is about to win beating Joe Perry unless the snooker gods have other plans. Well over the last week I have managed to stay indoors hiding from the cold January weather. For years I worked outside roofing and general building works and the cold never bothered me but now stuck in a wheelchair and hardly able to move I feel the cold weather and plead insanity if Heather wants me to go out. No not me insane but her she must be mad if she thinks I am swapping my nice warm living room for the cold outside. My radiator may get lonely and nobody would like to see that would they?? ALL SAY NO.
I am home alone tonight, our daughters have kidnapped their mum and are torturing her in the local cinema. LaLa Land in case your interested! I am not interested but happen to have overheard telephone calls. I try and avoid the cinema the last time I went involved a BFG and lots of children including our Grandsons. Its not that I don't like kids but two hundred kids in an enclosed space for any length of time is never going to end well on that occasion if my memory serves me correctly on two threw up, what do they feed kids to make them smell that bad?? Maybe it is just a special half term  diet. So I digress I wanted to know if you have any plans to mean I can avoid the cold weather, maybe I can paint spots on like kids do to avoid school.
Don't think this little girl will fool anyone 

Wednesday, 18 January 2017

Awful few weeks MS or Medication?

We all know how notoriously difficult it is with Multiple Sclerosis to diagnose any changes in your condition. Is it the weather or have you over done things. Is the new medication you are taking working against you rather than for you? when do you give up and say I am out of my depth I need help from a professional? For me that time came yesterday. Over the last few weeks I have been slowly getting less active and when I use the word active I only manage about twenty to thirty steps per day so any form of less is massively significant . I had started driving the wheelchair up to my bed where as normally I park on the landing and use the zimmer frame for the last few steps. In the mornings I have been unablen to use the zimmer to cross the landing to the bathroom. Heather has been taking me across in the wheelchair. Not a significant change but to me it has been enormous.
The only thing in my life that had changed was pain management I had started a new course of drugs to cut the relentless pain I get. It is not what I call real pain which is the pain you get when you take a lump out of your hand with a hammer. The pain I am talking about is like background noise and what is more it is relentless. Two days ago I was unable to move after  getting out of the shower it took about half an hour to get back into the wheelchair.
Much to my wifes annoyance I stopped taking the new tablets (I wont name them because everyone reacts differently to medication) Well here we are two days later and things are almost as before background noise pain and able to move with the zimmer. Oh the only difference is I have shaved my beard off.


I used a razor

Sunday, 15 January 2017

Miracle cures for all disabilities

We have all seen the headline MIRACLE MAN WALKS AGAIN AFTER FIFTEEN YEARS! Fantastic but when you drill down on the facts he is wired up to an array of equipment and isn't really walking  etc etc. All these cures are a bit like the medicine men that had a wagon going from town to town in the wild west movies I watched as a boy peddling hope. Each bit of hope contains a modicum of truth and eventually get enough modicum' s you may get a break through.
I have had multiple sclerosis for over twenty five years and I can remember one specialist saying to me “we can't cure it yet but one day we will, maybe not in our lifetimes but eventually" not much good for me but great for those that fit into the eventually category. There are all manor of illnesses that are now incurable cancer being the biggest and each of those modicum' s of truth or knowledge science gains is heading towards that day when we can say we have beaten that which disables us.

Thursday, 12 January 2017

Seems anything for disabled people is more expensive

I know there is a smaller market and I understand the supply chain demand etc.etc. but believe me the arse gets liked out of it by some people. I ain't mentioning no names I ain't naming and shaming. I am just saying buyer beware. I always say this no matter what it is. I buy a lot of stuff on eBay. You have to watch out on there don't just click on the first thing you find today I saved myself over eighteen quid by shopping around, I know that had nought to do with disability but it took fifteen minutes clicking the keys on the keyboard! So when you want to buy an item don't just take the first price, remember the Yellow Pages Advert "let your fingers do the walking" I still use my local disability shop but I say can you price match? 

Tuesday, 10 January 2017

New year New disabled shoes

 My feet are turning in, if I could walk I would walk on the outside edges of my feet. And to top it all my toes are screwing themselves up for good measure just not to feel left out. My physio refered me to some orthotics chap and I have now got splints down the backs of my calfs and round my ankle and under my foot all in a fetching shade of black and held in place with colour coordinated black Velcro. Did I ever tell you my joke about Velcro "what a rip off" get what a rip off good joke heh?
Today after months of no let's get Christmas over with I had to finally admit defeat and give in to Heathers "let's get you a pair of shoes"
I reluctantly drove the wheelchair up the ramp and was strapped in for the trip to the disability shop. At least we had the good sense to call the shoe shop in Canterbury she had planned to drag me round. They thankfully had said they had nothing to fit a cyber footed wheelchair warrior and could offer no recommendation other than a disability shop. Hence me be|ing loaded into into car this morning. Off we went to Birchington and despite all the promises the shoes don't fit cyber men from Margate be they wheelchair warriors or not. So despite all the promises all I came away with was a very expensive pair of slippers in a colour coordinated black and yes you guessed it matching black Velcro.
Some things in life never change. Oh I forgot to say we went to where the mobility shop was only to find it wasn't there any more it had moved some five years ago. Thank goodness for Google. Evidently when we got there they moved seven years ago next month so other than black and Velcro so maybe some things do change.
Splint similar to mine but mine is black and has black Velcro and is black so its not like mine at all