Thursday, March 23, 2017

My Beautiful Aly

My Beautiful Aly
the years have flown by in the twinkling of an eye
and now we are in our golden years
The bloom of youth has blossomed
and the autumn of middle age gone
now the winter of our sixties is here
The mirror doesn't lie 
 nor the white hair 
nor the wisdom lines
we both share
Where once was north 
now is deep south

Yet you still are my Beautiful Aly
My Beautiful wife
My Best friend 
My Lover  okay 
that I can no longer say

My love you will always be
My Beautiful Aly

(c)merimaat 23 March 2017

Friday, March 03, 2017

It was 20yrs ago today Traa dy Liooar

20 years ago we left the UK for the last time and started our new life on the Isle of Man which was in our hearts and became our home.
 20years ago, we and it were very different. The Isle of Man was mostly Manx both in people and in the shops and services, it was how Lancashire used to be we kept remarking. The Manx people were warm and welcoming and every body willing to help us and wanted us to succeed. People would tell us the best place to shop for such and such and tell us things about the island that tourists never knew. We soon learnt much about the history, not the history in the books, but the real history of the people. Who was in the wedding cake and where they came from, much of this was really funny, but people were open to us. Okay, some could say they were nosey, but as much as we learnt about the Island and about the people, they got our history as well even down to, it seemed at times our DNA! We soon learnt the truth of the saying that if you sneezed in Douglas then someone in Peel would say bless you. Perhaps the biggest thing we learnt was that if you were honest and really wanted to make the Isle of Man your home, the Manx would help you, but if you in any way put up a barrier you were a "comeover" and there was a boat at 9am.

So much has changed since we arrived, to be blunt not for the best in so many of the changes. Now the wonderful Manx shops in Town are fast becoming a faded memory, with the few remaining ones like the dying embers of once warm fire. Now you can walk through town and not see as many familiar faces or it take you 3hours to do your messages as you catch up with old friends. Now we have unheard of crime and we lock our doors and cars and even our once fully Manx companies are now owned by off islanders. It has not completely gone and I hope it never will, but it seems to be heading that way as Morecambe did,the rose of Lancashire with a heart of gold, became the jaded old lady sitting on bench remembering better times when the world was younger and people loved her. I really hope my beloved Island home doesn't become the grumpy suspicious old man reflecting on his youth when he was the envy of the world.

20 years on this is our home, while the blood of Lancashire flows through our veins it does through a heart that is made on the Isle of Man. For this is our home and the only place that we would ever want to be until we pass to the great place beyond and then our passing will be to Ellan Vannin.  In so many respects, I am more Manx than anything else, for it was here that I was helped on my journey from the abused kevin to Kev. For as much as the island has changed, the greater changes have been within ourselves. It is funny when we do the quizzes that come up about how Manx are you and we score 100% on them, we sometimes think and say do you remember when we used to think how can anyone say its far to Ramsey and now we plan to go there.

This beautiful Island still enhances us as still amazes us with its beauty and it's many, many hidden gems. It still can lift our hearts and make our souls soar as we breath in the fresh clean air. We can still go to our special places at night and gaze at the wonders of the universe. Still get a proper Manx welcome in many places and still find our quick five mins turn into an hour, still get the skeet. The unfathomable Traa dy Liooar of the first day has become thankfully part of our way doing things. The two that came here to start afresh in our second year of marriage, not only found a fresh start but a home and the place where we belong. Perhaps the biggest compliment that we have been given to us is when people say Well I never knew you weren't Manx !

Traa dy liooar. T'eh taishbyney yn traa kiart. Time Enough, It shows the correct time. I think I shall have on my grave stone, for the correct time to do anything is when there is time enough. So 20 years ago was the correct time for us to have time enough for Ellan Vannin to become our home. Now we are Aly from the Parish of Ballaugh and Kev from the Parish of Malew , different names and in many ways different people thanks the magic of this jewel in the middle of the Irish Sea.

Tuesday, February 21, 2017

living with Myalgic Encephalomyelitis for my friend Anne

Yesterday I heard the sad news that my friend Ann had been told she has   Myalgic Encephalomyelitis so today I am writing this to help her and may be just help others. These are just things I have learnt and how I deal with things.

Medication; have pain killers, but only use them when you REALLY need to do so. Antihistamine tablets are valuable fight against things as is folic acid, remember M.E. attacks the body each day and these help fight the worst of it. Get regular check up for your thyroid as this is also attacked by M.E.

Light and Sound: get lower wattage light bulbs, turn down the light on your lappy or pc and adjust the brightness of your TV. Get "black out " curtains to cut out the light at night. Artificial light is particularly stressful for M.E. sufferers. Natural sun light can be filtered, if you wear glasses get anti glare coating, wear a hat that shades your eyes and if the sun is very bright then sun glasses help. However natural sun light is good for you and helps with M.E. so adjust things so you can get out when you are well enough. Sound you have little control over apart from making adjustments in your own home. It is very painful and I haven't found a solution apart from being able to get out to someone peaceful to try and relax and even then that is only possible when you feel up to it.

Brain fog, well write things down so you remember them and try to explain to loved ones that it happens and they need to be aware of it. Again I have not found a work around this and when I have I can't remember what it is. Don't worry when you make mistakes and can't see them, a good spellchecker can help, but sometimes just call the thing you can't remember a thing.

It is important to "listen to" although it is something none of us do, what your body is telling you. If it needs to rest it needs to rest. Usually I find my throat starts hurting when I have reached my limits and know I have to rest. All of us push ourselves beyond this because we want to be normal, however you have to accept that you are now disabled and not like you used to be. There are days when you can do things at first but this goes down to hours, so do what you can in those hours and rest when you can't.

Accept the fact that sleep will not improve your mind or body functions, it is just a slowing down not the relaxing refreshing thing you have been used to having.

Establish routines; this is the most valuable lesson I have learnt. I have a routine in the morning of getting up and making coffee and feeding IsisKitty and using social media and then resting. When I can remember I eat at the same time each day and shower at the same time. Having this routine helps me and gives me a reason to get up even when I don't feel like it or am not capable of doing so. In between the routine I do have to rest and in truth most of the day is resting.  Try to go out at least once a week for if you do not do so it is very easy to be afraid of doing so and retreating from life.

Every body is different because as with any disability Myalgic Encephalomyelitis affects us all differently. There may be times when it does seem so bad and others when it is really, you just have to live through whatever it brings you. You have to accept that you will not recover from it and your live will never be the same again, that is hard. HOWEVER THE WORST THING YOU CAN DO IS LET IT TAKE "COMPLETE OWNERSHIP" OF YOU AND YOUR LIFE - IT IS SOMETHING YOU HAVE NOT WHAT YOU ARE. STAY POSITIVE

I hope some of these things help, but each of us find our own way. I went from being a very active out going person to one who now can really on communicate through social media and not even then on my worst days and most of that is copy and paste. Yes I do my blog and try to keep to my routines, but this week I've not really been able to do. After 10 years of starting with it and now knowing it is having more attacks on my body I know what to expect more or less, but each of us is different, so your pathway will be different. Just remember you are living with it, and do your best.

Sunday, February 19, 2017

Myalgic Encephalomyelitis is not CFS the battle for understanding continues

   Myalgic Encephalomyelitis is not CFS the battle continues until it is understood. I don't know how many time I have to say this, probably until my last breath  Myalgic Encephalomyelitis is not CFS and even then people still will not understand the difference.

CFS as I have stated many time is recoverable from and most with it (but not all) will recover from it.  Myalgic Encephalomyelitis is not recoverable from and no one ever does recover from it. There are periods when it is less that at others and yet the truth is that most of the time it is worse and there is a downward path to it . 

I actually feel sorry for the doctors, because when we who have   Myalgic Encephalomyelitis really could do with their help, but the only time the doctor will see us is when we are having a "good" period, however long that lasts and when we are capable of doing something.They and no one else sees us  when we feel and are at our worse, because we're forced into doing nothing but get away from everything.So when we are seen it's because we are feeling less worse than our very worse, we are never fit just less unfit . It is during these windows of time that we make the best of what we can to do what we can, before we are back to not be able to do things again.  I can honestly say to you that since getting  Myalgic Encephalomyelitis the only times that I've not been fighting it is when I have been under having an operation, but when I wake up the symptoms kick in and I know that momentary relief will not last. 

The difference between   Myalgic Encephalomyelitis  and CFS is like the difference between having a cold and having flu. When you have a cold you may be incapacitated and feel rotten but when you have the flu everything is painful.  Or the difference, between having the blues and being depressed, when you have the blues things are hard, but when you have depression things are impossible. 

So it is with   Myalgic Encephalomyelitis and  CFS while they seem to the outsider the same and present the sufferer with many of the same symptoms, which means so many who have CFS are told or believe they have  Myalgic Encephalomyelitis.  Myalgic Encephalomyelitis is, for want of a better description CFS with flu ++ 

I have been looking at things even more closely lately when I feel capable of and see that   Myalgic Encephalomyelitis presents in many ways similarly to Fibromyalgia and there may be a link there which if found may well help the sufferers of both eventually be helped and a cure find, probably through genetics,  as I think both are a genetic attacked condition. However if you look at Fibromyalgia and CFS there is only a  very tenuous link there  to say the very most.

Okay so you are all going to get bored with me going about   Myalgic Encephalomyelitis is not CFS, but I have to do so, not for myself, but to be the voice of others who have died through it and who don't have the voice that I have. Yes this has taken me a week to do, but if only one person reads and understands then it will be worth it. 

Monday, February 13, 2017

The Chrysalids by John Wyndham a classic favourite from 1955 but a story for our time

The first time I read  The Chrysalids by John Wyndham. must have been in the early 1980s when I would visit my local library each week. I loved it then and so went on to read the rest of his works including  the Day of the Triffids, which is perhaps his most famous work. From talking to people it is the only thing that Mr Wyndham is remembered for by most, which is a pity as he is such a great author. So ladies and other peeps let me introduce you to the Chrysalids which is available in Penguin Books.

 The Chrysalids is set sometime in the future in a world that  was destroyed  almost completely by the insanity that is a nuclear war. We enter a world that this still recovering from that and the ascendants of the survivors of that. It is based in Labrador and told through the eyes of David who along with his cousin Rosalind and their friends a different to others in their small community and its excepted norms. In this world we are confronted with what it means to be normal, who sets the standards of normal and the fear of anything that deviates from that. We also enter a world of religious intolerance where every thing has to live up to the standards in the interpretation of the bible. Not just the bible but another book that sets out to say what the bible means. It explores in depth these themes, but that does not make it a boring book, far from it as it moves along at quite a pace.

There is so much depth to this book and although it was first published in the year of my birth 1955 it is very relevant today when the world is entering a period of religious bigotry and the threat of another world war and the consequences of that could become a frightening reality. It is explores what is like to be different not to fit into the norms and asks who sets those norms and why are we so afraid to move on.

So within what on the surface is quite a simple story told by the main character David, not only do we enter his world but we like him are left questioning so many things. Yes Mr Wyndham leaves us with hope, hope that as we evolve we can remove so much, but also with the that we are left with the warning that if we do not learn that even the evolved fall into thinking that they are superior to what is and what was.

Yes I really love this book and read it within 48hrs of getting it, something I've not done for years. It is a great book that leaves you thinking it would make a great film, but then as with all great books they are best left as the writer intended to be alive in your mind and no film can ever truly be as good as that.  SO BUY IT READ IT AND ENJOY AND THEN RE-READ IT AND ENJOY AGAIN     

Thursday, February 09, 2017

Happy Re-naming day Me

So now it is done as of 7th of February 2017 Kevin ceased to be for all legal purposes and now Kev is here for always.

It has taken a long time for me to finally arrive, to finally cast off the shadow of the abused kevin, but the recent spate of stories of childhood abuse and their negative impact on me made me think it was time to try and close one door for good by removing that name from my life.

Some might say it is not much of a change, just the removing of two letters, but for me it is a massive change. By removing those two letters the i and the n, I take the past out me, the abused past. You see Kev as never been in the past, just person who has tried to deal with and who continues to try to do daily. No one really can understand this unless they've been through it, but each time, I saw that name in relation to myself it reminded me of the abuse, because that was what I was called by my abusers.

There is another reason why I kept the majority of my name the same and that is because of my Mum, she named me and I owe it to her and all she went through. I know she will understand my taking those letters out.

So after being known as Kev for all these years, the journey from kevin to Kev is completed officially. So now it really is Aly Kev (couples always seem to be joined together don't they).

 So it was happy re-naming name to me !

Wednesday, February 08, 2017

How will I live without you? Not a question I want to have to answer

These last few days been very emotionally hard for me. Last  Monday Aly, who had been out came home saying she wasn't feeling well and was getting pains in her chest and feeling giddy. She already has had a minor stroke and heart disease runs in her family, both her elder brother and her mother died as a result of it. Fortunately she had the sense to come home to rest and if the worst came to the worst I was here to call for whatever help she might need. It hasn't come to that, because I have been doing my best for her and making her relax as much as possible keeping my eye on her and checking her blood pressure.

 As far as possible I've not been showing her my fears and the emotional state I am in. This has been very hard to be honest, even impossible and if she has seen me in tears then I have blamed my going through the change, not that she believed a word of, but I've tried.

For the last 21 coming on 22 years we not spent more than a few days totally apart and those were only when I was on a course or when she was in hospital. Both of us hated those times and felt lost without the other around. True we could speak on the telephone, but it's not the same thing as holding and kissing each other good night. The house looked and felt empty with out the other one being there, even if they can be a right pain sometimes, they're your pain and it's a pain you love. Somehow when you love someone and are married to them or live togetheenr, you always expect them to be there. I expect Aly to always be there and yet these events have left me with the dread that one day she might not be!

To be honest none of us like to be faced with reality of our own mortality, but every once in awhile it comes along and kicks you in the naughty bits forcing you to face it. Facing your own mortality, is frightening enough, but facing the mortality of the one you love, your best friend, lover, partner etc, somehow is harder. I have found myself asking How would I live without her? The simple answer is that I really don't want to do so and have made plans not to do so. I also think that I would die of a broken heart if she were to go. The truth of the matter is however, I don't know if either of these things would happen, so I am still left with the unanswerable question - How will I live without you. Sadly it is a fact of life that millions have had to live through and no one wants to have to do. I wouldn't want Aly to have to do so.

No matter what you accept happens next and even if you are convinced of knowing the answer that you will be always together, the fact is that we all we want to remain here where we know and not go there and not go alone -

So if you know the answer to How will I live without you, please tell my heart and get it to know, because I really haven't a clue.