Officially, chronically mum.

Thank you for reading my last blog, it really does mean a lot to me. 



This one may resonate with many parents reading who have a chronic illness or those who's partner has a chronic illness.



It is quite a personal entry and I have been thinking about this a lot recently. I know I am not alone on this subject speaking with others who have similar thoughts, fears and feelings of guilt. Please bear with me as this is a little longer than previous entries as it is not a subject that can be cut into bite sized pieces. This is real heart on the sleeve of feelings I feel should be shared to show the invisible is clearly very visible, if you just look. 

I have dreamt of becoming a parent since childhood, role playing with dolls and watching my mother lovingly shape me into the woman I have become, for that I will be eternally grateful.

My dream first came true in May of 2000 when we welcomed our first born son into the world after being told that due to my endometriosis I may never be able to conceive. As I took in this little miracle and precious gift I planned our future as a family. I vowed to protect, love unconditionally and teach our son how to be a loving human being and to share our lives and have so much fun and make memories to last forever.

We watched him learn, grow, complete milestones and bring us endless joy, worry and frustration. This little boy was perfect in every way and he was my reason for getting through each challenging day. Four years passed and we decided to extend our family if that was our destiny. 6 months later we fell pregnant with our youngest and final son, son number 2.
We welcomed him into the world in June of 2005 again we held our second miracle and all those previous hopes and dreams came flooding back with endless, unconditional love. I also promised him the same I had his big brother five years ago.

The next 3-4 years became a real challenge as this little man decided he wouldn't sleep much and was like a delightful whirlwind full of enthusiasm, mischief and pure curiosity as all children should be. 
I began to notice I was becoming less able to keep up with my boys and declining play time more, especially as the day went on. 
I put it down to being a mother of two energetic boys and all that comes with them. 
I had started having agonising migraines that could last for days and in some cases hospitalise me. Many of these were brought on by lack of sleep and on top of that working night shifts. I began to feel guilty that I was having to remove myself from family life more often and was struggling to keep up with work, house work, being a mother and a wife. I still craved for a social life as I have always enjoyed letting my hair down and enjoying music and dancing with the odd drink or two. This is slowly dwindling as I can barely get up in a morning let alone go anywhere after work or past late afternoon. I do try and make myself but, a lot of my plans are cancelled now or are not even made as I know physically I cannot withhold them. 

 I watched on as fellow parents  ran, played, laughed whilst bursting with energy. I remember feeling like I was letting my boys down already. Not knowing why I couldn't find the energy to do all that I should be. I felt that they could see others and feel like they had been cheated somehow. I am pretty sure they won't hold it against me but you never know what is going on in somebody else's thoughts. 

I begun to feel different within myself, tiring quickly, feeling like I had flu or a constant virus. After many trips to the doctors, changing my career and countless blood tests I was finally diagnosed with autoimmune disease and connective tissue disorder two weeks before Christmas 2015.
This conjured up a barrage of feelings and emotions as noted in my previous blogs.
The hardest to come to terms with is that I cannot be the mother I promised I would be to our new born sons. This hurts the most and I still cannot except this fully. I find myself less patient due to chronic fatigue and pain. I have cried after they leave for school at how grumpy I have become. I have cried at the love and gentleness they show me when they see I am feeling in pain or just exhausted. Our youngest son just hugs me and says 'Are you not feeling well again, a hug will help'. They are so caring and concerned. Our youngest has a huge heart and is a confident little comedian and makes me laugh every single day. He is going to get along in life just fine and make me prouder each day, that is a given.

It should be me being there for them! 

I wanted to take them on adventures, show them the world, camp in the forest, go to festivals and watch their faces as they drank in their surroundings. I wanted to have movie marathons eating our weight in pizza and chocolate but one film is exhausting and eating is hit and miss some days. I cannot camp as the cold hurts, the floor is definitely a no ( 2 years ago we camped in the back garden for one night, it took me a week to recover! ) I cannot stand all day or walk around all day at a festival. Yes there are ways to get around some of these hurdles, believe me I am looking into them. 


Our eldest son is on his exam journey in his last year at school. I should be helping him study, encouraging him to be confident and cheering at the side lines. Some days talking is difficult let alone cheering! 
He is growing into a handsome, kind, loving young man and I hope he knows I am still here inside this crumbling shell. He makes me so proud and honoured to be his mum.

They have to take on more responsibility around the home which I know they are not keen on but they do it to help me and their dad out as we both work Monday to Friday. This is on top of their homework but I will never let them miss out with friends, this to me is much more important. Their happiness will always come first! 

Another fear is that they will forget their happy, smiling fun mum and just see the tired, quiet mum I am becoming. I want to be their confidant, their ears, shoulder and comfort, not the other way around. 
They make my heart burst with pride every day for the beautiful souls they are and their desire to see life and what it offers. I want them to travel, experience, feel, be amazed every day. I want them to fall in love, build a life, a home, a family. Hopefully I will be there with them, hopefully I will not cause them distress or fear of what may be.

 Nobody can say their future is certain, secure or mapped out. The road can lead us anywhere and often has many bumps, pot holes and wrong turns. I hope I have taught them love, kindness and understanding that they will draw upon into adulthood and be the men I know they can. I hope that whatever happens with me that they will not let it burden them or hold them back. I still have a few miles in me yet and plan to make damn sure it's spent with my precious family and new experiences are to be had! 
I have some amazing friends old and new and each and every one is so precious to me and I hope they know this. 

I am in the process of creating a bucket list, that's for another blog! 
Friends and family watch out you are going to be busy having fun. And Gary Barlow, I will meet you one day, I will!

I am still a long way from knowing what my future holds but one thing I know will never end is my love for my two miracles. Boy's I hope you will know this forever and will always experience new things for us to talk about, laugh about and cry about. My boy's you are my world and that is something I will fight for always. 

Keep on fighting fellow warriors!


All my love

Mum (Carrie) xxx

Officially, chronically hair today, gone tomorrow!

Hello everyone and thank you so, so much for the lovely messages regarding my last blog post. I am overwhelmed and humbled at the support of some. 

Laying yourself bare for all to see isn't easy but in some respects needs to be done. It is not for attention but for awareness. The thing with silent illness is that those who have it, keep silent. Nobody wants to hear how much pain somebody is in or how low they feel and we know that. Only ask if you want an honest answer. If we say 'I'm OK or I'm fine' just remember that's probably when we feel our worst.

Today I would like to talk about a woman's worst nightmare and no it's not losing your keys, phone or favourite lippy. But it comes close to somebody discovering your secret bar of chocolate saved for 'that week' each month.
It's about losing your hair.

For a while now I have watched it escape down the plug hole with not so much as a goodbye or, It was great but I have to leave, It's not you, it's me. Just a cold, heartless disappearance. I could understand it if we had just started our relationship but after all this time together!

I am coming to terms with it now as it's been a long, gradual but still ongoing problem. 
I have considered contacting David Guest for the scalp formula he uses to cover his balding barnet!

The question is what do I do about it?

I have deliberated over this for many and hour at bed time when those little mind demons camp out and probe your brain with useless questions and those items you forgot when grocery shopping. 

I suppose the next step is to get it cut short so I can adopt the comb over to hide my 'friar tuck' patch. Rest assured I will not end up looking like a geography teacher from 1985 (no offence to geography teachers, or teachers of any subject).

The next decision I must make is to let the grey continue to sprout and invade, colour it all my natural brunette or funk it up. A good pal said 'You are too funky to be grey', I'll take that! 
I fancy a bold red but will it make my pale complexion a paler shade of dead? I like purple but have the same problem. Should I go blonde? Will I have more fun or still want to live in my PJ's and be even more frustrated that it was a lie? 
All this decision making makes me want to pull my damn hair out let alone watch it fall out!

This may seem a silly, un important, unnecessary waste of spoons to some but to me personally, it's big! 

Joking about my personal battles has always been my survival mechanism and has worked so far. If you can't laugh at yourself then you need to go and sit on a desert island and have a word with yourself!
But joking aside for a moment, the most devastating thing that could happen is that people begin to notice, whisper, point or laugh. Those closest will not I know this with all my heart but there are always going to be children in the world and nosey, outspoken non 'inappropriate' filtered gossips.

How to combat that approaching nemesis?
Learn to take a deep breath, smile (as usual) and answer honestly. My favourite answer will always be " I am making space for my halo or horns. I haven't decided yet"

I have discovered how strong my illness is making me mentally but breaking me physically. I will no longer suffer fools or allow myself to be made to feel un important or ignored. I am still here, I am learning to adapt and I hope others will too. Madonna always re invents herself, why can't I?
Stay strong chronicle warriors!

Thank you, much love

Carrie x

Officially, chronically Broken.

That's it then, it's official! 

I am officially broken.

Recently I was diagnosed with autoimmune disease and connective tissue disorder, under the category of 'chronic illness' . I don't understand it either but this is the beginning of my journey to an uncertain future, which I hope to share with you and we can learn together as we go forward.

There are many, many people like me suffering from silent illness that have very loud symptoms you simply cannot ignore.

I cannot speak for everyone who has a chronic illness but already I am getting the usual, predictable reactions from people.

"You don't look ill"

 (thanks, I think!)

"Why are you so tired all the time? Can you not just get an early night?"

 (If I went at 8pm or 1am I would still feel the same and that's not guaranteed that I will actually sleep. I may even need 1-2 naps during the day if I have the chance let alone the time!)

"Do you think you may be depressed or feeling down or stressed?

 (I know how I feel and of course I have bad days but who doesn't. If I was depressed would that make a difference, make it more acceptable, understandable?)

"You will feel better in a few days!"

 (No, no I won't, it only gets worse.)

"We all feel like this as we get older"

 (I'm not in my 40's yet and was probably born with this curse, do I look old? I bloody hope not!)

"Keep thinking positive and you will snap out of it" 

(you cannot 'snap out' of any silent illness be it mental or physical so I suggest you snap out of my way please, thank you!)

"It's not serious or life threatening so I wouldn't worry"

 (Oh but it just may well be! but thank you for your concern.)

"At least it could be worse, it could be cancer"

 (Did you actually just say that?)

"When will you get better? 

(Forgive my hysterical laughter, oh , was that a serious question?)

"We all have aches and pains, just think positive and get on with it!"

(O.....K....!)

I could go on but I won't, like I don't in daily life because somehow from somewhere I have to find the strength to make it through each day before collapsing with exhaustion at the end of it.

"What does it feel like?"

from my own personal experience it feels like you have been hit with the worst flu virus ever known to man that smacks you in the face the second you wake and clings on to you through the day, becoming heavier and heavier until you cannot carry it any longer. And whilst pushing through what feels like gale force winds as you walk you have to complete daily tasks previously taken for granted. Each task leaving you more exhausted than the former and taking longer to complete. Some days my digestive system doesn't want to play the game. Just the thought of eating creates pain knowing how much pain actual eating will cause. 

Have you ever swallowed a drink or food that is too hot? That burning sensation, that is in my stomach and intestines through to the bowels for days at a time. It will go as suddenly as it came (that's a very good day). 

You know that feeling in your legs when you have had a really long day at work then gone out shopping or even a night out afterwards, squeezing a dog walk in? That is how my legs feel on getting up.

Then there are the 'spoons'!

These are what we name in the 'chronical' world the tasks we complete and what it takes energy wise to complete. I am yet to still get my head around my personal spoon count as I have not made the transition from being a typical human to a broken one. I still run around like a headless chicken thinking I can do what I could twelve months ago. 

Work it baby!

I do work, two jobs at present in between being a wife and mother. 

I find it overwhelmingly exhausting but this does not mean I cannot work or need to give up working. I just need to decide what tasks I can delegate to others be it in the home or at work. Not only am I still adjusting to my broken self, but, so are they! I have always had a very strong work ethic which is probably my biggest demon at the moment as I will not give in. Nobody in the medical field has told me to stop and until then I will push on and draw from what dignity I have left (which actually isn't much when you have given birth!).

I enjoy the social aspect of working and the fact you are continually learning and growing, gathering new skills each day. The laughs, the highs and the lows you share with colleagues daily is what keeps you going, well it keeps me going! Some days I don't feel like laughing, some day's I don't feel like talking but I'm still here, inside the crumpled shell. 

Wedded bliss!

I am married and have two sons, 3 cat's (one has moved out to a quieter climate, her own choice) and a 6 month old puppy, a cockerpoo. 

All these amazing beings were in my life before my diagnosis and hopefully will be for the foreseeable! These are who suffer the most from this curse. Of course I have the daily physical struggles but they now have to get used to the fact that the old me has gone on a permanent vacation and have been left with this shadow. I don't think they will ever truly understand or comprehend what it is like or what is to come but I hope they will walk with me until I reach my final destination. I know I can be testing, frustrating, boring and extremely forgetful and very grumpy at times. Unfortunately, that's how it is now. The boy's are being fantastic and stepping up, helping and walking the dog and so on but, I cannot help but feel guilty and sad for them that I am not what I once was. My love for them and overwhelming sense of pride will never leave me, that I am certain. 

Then there is my long suffering husband! 

I cannot do all the household jobs/chores like I could a year ago. Sometimes making the bed doesn't happen, the dishes are still there when he gets home, he has to pick me up from work now I cannot walk home after a full days work. I am barely awake in the evenings and if I am, I am too tired to talk or listen. I cannot give him the future he once saw, the growing old together and going on new adventures, the retirement bringing more time to do things. My biggest fear is that my family may grow to resent me for the burden I may bring. I have every faith they will not but who can say what will happen? 

There is a grieving process that comes with a diagnosis like this that you must allow yourself to go through to keep you moving forward.

Firstly I felt upset, upset for the future I was planning that is no longer certain, but definitely not unreachable. Upset that I have to cancel plans due to feeling to exhausted to even get dressed. Upset I cannot do all my son's wish me to do as even my thought process has changed, my memory. There is a 'brain fog' setting in that is so draining I am tired before physically doing what I am thinking about doing! Playing a board game is exhausting, watching a film is exhausting, engaging in conversation is exhausting.

If I do go out socially it's becoming less of an excitement and more of a chore as I know how tired I will be before I am tired. 

If I have a few alcoholic drinks on these such occasions I think I can have a dance then cannot walk for days later without agony and stiffness. Dancing is what I miss the most and will continue to miss the most the less I can enjoy it. I feel that I am letting my loved ones down for not being the woman I was a couple of years ago, for being less able to do all they need of me. 

Secondly and the stage I am still at is anger, anger at myself on a daily basis for not being able to do all I need to do, want to do or am asked to do. Angry at the life I was planning but will not accomplish. Anger that I am becoming a burden to my family, husband, children, friend's, employer's, work colleagues. 

Thirdly acceptance, this is still on the horizon for me as I cannot accept what I don't yet know or understand.

Does chronic illness define me? No.

I will continue to be who I am but a stronger, more determined and optimistic version of who I was. Of course I have bad days that just getting up is the first struggle of many until I go to bed again (often with broken and little sleep)

I do not know if my life will be shortened yet but I do know it will be limited. 

I do not know how much my own immune system has damaged my internal organs yet but hope that the near future will bring some relief and management. 

All of the above descriptions do not take me over, please know this.

I am still me just a little slower. I do not want people feeling sympathy or sorrow but I want them to see the strength in me that I draw on daily, hourly. I want to laugh and smile, I want to see the world, the beauty in nature not these four walls all the time. If I cannot come to you, please, come to me. I am a person, a human. It's not contagious, I won't drop dead on you, you can still give me a hug and touch me, I won't snap or break. If you want to know, just ask!  Still invite me to whatever you are doing and I will do my up most best to be there! I may say no more than yes these days but I have to, to conserve my 'spoons'. Yes I may have bad days, sad days but that is when I need you the most.

Fellow warriors, please comment and engage with my blog so we can learn, grow and beat ignorance and myths of this cruel body snatcher together. Non warriors please also engage and we will try and gather a better understanding of how we can keep moving alongside one another in the rat race of life.

Thank you for reading and trying to understand what I and many others still don't, Hopefully we can achieve this with a bit of humour along the way.

This has finished me off for the day so off to bed I go. I will be back once I have a little more of an Idea of what happens next and perhaps I'll have a name for my body snatcher! 

Much love

Carrie xx

 

Got myself a living doll!

When you hear the title of this blog, most of you will picture Cliff Richard with his friendly smile and perhaps also 'The young Ones', starring Adrian Edmondson, Rik Mayall, Nigel Planer, Christopher Ryan and Alexei Sayle.

When I hear the title, it fills me with a little dread as I picture the silicone creations that are full body and face masks to allow alter ego's to act out their fantasy in the everyday world, a 'Mrs Doubtfire' meets 'Hellraiser'.

  
Last night like most of the UK after a long day, I relaxed in front of my TV and indulged in fiction and also dabbled in some twitter conversations. I noticed that the most popular 'Trend'coming up on my feed was #LivingDoll.

Lots of tweets where suggesting that the Channel 4 Documentary was interesting to say the least. Some where disgusted, some speechless and some just rude about the whole thing.

I decided this was as good a time as any to turn over to Channel 4 and see for myself what all the fuss was about.
The gist of the documentary was that men who have a female alter ego but are too scared to dress as women buy these silicone body suits and face masks to become women and to hide behind in confidence. These are available online and made to measure so to speak. They are near true to form with all the required parts (if you know what I mean!) and are tailored for each individual.

The documentary showed a get together of these individuals at a hotel where they met the creator in person and aired their questions and complaints about the suits and masks. They also dressed up both in the safety and comfort of the Hotel and went to a night club. Needless to say not everyone accepted them and gave them verbal abuse.

 
My husband and I after the initial open mouthed silence began to discuss our theories on why these individuals felt the need to hide behind these and live a separate often secret life. I have no malice towards anybody's alter ego and would not treat them any differently but cannot understand why they would put themselves through the verbal abuse and hatred. As with most things in human society, all change and difference is frowned upon initially until people get to grips with it and in their own minds come to accept.
 
We all like a good Drag Act and find it entertaining and have accepted that some people have two sides to them. Yet there is something most people found disturbing about donning a full silicone suit and mask, to become that alter ego in public.

Jokingly my husband announced he would purchase one (or was he?),to which my reply was "If you do, you will end up in the recycling bin".
This amused me for a moment but then I felt an overwhelming sense of guilt that these men had put themselves out there on National television knowing they and their families would be rideculed, and I was doing exactly that! 
It in our eyes it is seen as strange and unnatural but, to them it is perfectly acceptable and part of who they are and need to be to live their lives fulfilled.

One of the Males who dressed up frequently was married (to a woman) with 6 children, who all knew about and mostly accepted his separate life. I couldn't help but think, as a parent myself that this had to have some impact on the children growing up.
 
Where do we draw the line between being completely happy and fulfilled and causing others (family and friends)distress by doing so?
The fact of the matter is that we as a collective race will never come to just accept change and difference, it's not in our conformative make up Bahhhhh!

And this is why there will always be real life documentaries to open our minds or keep them closed!


I would like to take this opportunity to than Ben Hatch(@BenHatch) the Novelist, writer of 'Road to Rouen' and 'Are We Nearly There Yet?' amongst others, for giving me the push I needed to write this and previous blogs. Your a true gent, a thrifty one at that! 


Thanks for reading I would love to hear your comments/thoughts on this please!

Eye Eye you have what dystrophy?

Vision is one of the most taken for granted, vital senses we have. Living life in total darkness is our worst fear. Most of us are luckily born with full, healthy sight and never think about how truly amazing and important it is to us.
Some people are born with none and never know any different yet live happy fulfilled lives and even get numerous degrees and top jobs.

Some people are born with hereditary eye diseases that until they reach a certain age are not aware of and will cause mild disruption, pain and frustration yet continue to live their lives without anyone noticing or being aware.
Lets face it, if someone is walking round bleeding or with their arm back to front, It's a given there is something wrong. Then there are the silent sufferers of diseases and conditions that nobody can see and may never know you have.

This blog is intended to give you all a little insight and awareness into eye conditions that my partner and two son's have and maybe make people think a little and understand what goes on behind the scenes, how it effects our lives and what they go through each time their condition 'flares up'.

I will try and include as much factual based evidence as I can that I have pulled from the Internet but mainly include our personal experiences. Each sufferer presents symptoms differently than the other.

Get on with It I hear you sigh, that I shall!

Some may never suffer and the disease may lay dormant but could appear at any time.

My husband and 13 year old son suffer from Lattice Corneal Dystrophy. This has 3 types and each type is unique and strikes at different ages. Their unique type is type1.

Type1 in easy to use language, manifests from a mutation in the gene and is hereditary but sometimes skipping a generation, however a family of sufferers will most certainly carry on the gene through many of the generations. (will explain symptoms later on).
My husbands sister has the dystrophy yet her son does not. We are yet to find out if his 3 children have it.

When a sufferer has a detailed eye exam the examiner will see comma-shaped deposits, overlapping dots and branches creating a lattice effect. Over time the lines will grow opaque and more of the stroma (supportive tissue of the epithelial) will be involved. Gradually the cornea will become cloudy and effect vision, reducing the strength and clearness. This disease is bilateral (effects both eyes) and is usually detected before 10 years of age. Although this particular type of dystrophy can occur at any time of life, the condition usually arises in children between the ages of 2 years and 7 years.

 (Information gathered from http://en.wikipedia.org/wiki/Lattice_corneal_dystrophy )

One of the early signs in our son's began from as young as 6 months manifesting in recurrent eye infections and the slightest thing to irritate the eye would result in an abrasion or ulcer. My husband however only presented with symptoms in his very late teens. Our 13 year old son had his first ulcer the week of his 8th birthday confirming the consultants diagnosis.

Our youngest son who is 8 years old has been diagnosed with a different type of dystrophy in his eyes. This is called Map Dot Fingerprint Dystrophy Also known as basement membrane dystrophy (sounds like a band name!). Although he gets regular abrasions on his eye his vision will not be impaired yet he will get more of them and will be extremely painful. He does not get ulcers, and does not need to 'scratch' his eye to get an abrasion, they can and often occur after or during a common cold or general illness. Map dot gets it's name form it's unusual appearance of the cornea during an eye examination. Most often the affected epithelium will have a map-like appearance for example, a large slightly grey outline which looks like a continent on a map. There may also be clusters of opaque dots underneath or close to the map-like patches.

(Information gathered from http://wuphysicians.wustl.edu/page.aspx?pageID=523 )


Any sufferer of a dystrophy is said to have 20 times more sensitivity on their cornea than any non sufferer. I guess this to some degree has made me obsessively protective over them when they  are just playing, or if partaking in sports even in daily life such as school/work.
 
When any of them get an abrasion or ulcer it often leads to a minimum of 3 days off work or school, to a maximum of 7 days. This is dependant on the severity and size of the abrasion or ulcer. Sometimes for a Lattice sufferer it has been known to get both an ulcer and abrasion at the same time resulting in severe pain and discomfort not to mention intolerance to light.

This is very difficult to see as a carer of someone you deeply care for as you cannot take away or alleviate the pain, you have to let it heal and run it's course. Administering treatment can prove difficult and frustrating to children as they not surprisingly, are reluctant to open the affected eye. When our two were both toddlers we had some rather distressing experiences at hospital when staff were asked by an on call ophthalmologist  to 'hold them down' so they could prise their eye open to examine them. This is a rare occurrence let it be known but still tattooed on ours and our children's brains. There have also been occasions when our children have almost been sedated or put under general anaesthetic just so they could be examined. Luckily they now open their eyes however painful to avoid the aforementioned experiences!
A vicious circle ensues as without antibiotic drops or ointment, the ulcer or abrasion cannot heal quickly and without complication. Bacteria will throw a raging party in a damp, dark, closed eye and the police will get involved, it all gets kind of messy It's just not worth the hassle to be honest. Treatment is always needed and on a serious note, essentially within 24 hours of the ulcer or abrasions onset. And this may be a good point to clarify I do not have any of the above which makes me very lucky yet, I am the one with the poorest vison and glasses!

When trying to explain that any of my children or my husband has a 'sore eye' can be difficult as people do not see the long term effects, strain and infringement on our lives or any other sufferers and their loved ones. They can have a 'sore eye' at any time, season, day. They may be regular they may be years apart.
Planning holidays, trips out in the short term future is difficult and always have to check for 'cancellation policies' due to this as they can occur at any time. They can go to bed fine, wake up and 'boom' they cannot open their eye and the pain is intensely persistent. Any new extra curricular group or teams/sports they attend we have to explain to the staff/coach about this and to advise that all care is taken when near their faces. Even in school we have had to make them aware of this and give them print outs of the condition for them to understand, and that they don't look at us like were over protective loons! It can infringe on daily life as watching the TV or the PC monitor, playing games consoles have to me limited and spaced out as the eyes dry out and can invite an abrasion. It has deterred my husband from trips abroad as when one of them gets a 'sore eye' the sufferer and myself are pretty much housebound for up to a week in the dark. Well that would be a pretty boring, waste of time holiday wouldn't it! At least if were a car or train ride away from home we can get free treatment (in the UK) and be in the comfort of our own home.

My husband has said that it's made him appreciate life a little more as he is getting older a flare up takes longer to heal and can leave more scarring on the cornea. And now he appreciates the good things that are free in life a little more like days out, walks, scenery etc. The good news is that his strain has not left too much scarring he can still drive, work do all the things anyone else can do and most probably will continue to do so.

There are immediate treatments such as antibiotic eye drops or ointment then there are more drastic treatments for sight deterioration which include Corneal transplants. These can be done using a 'donor' (sounds macabre but how amazing are the donors for agreeing to save some body's sight!?) or even now there is a man made (plastic) cornea (under research and development as we speak) which make the return of the dystrophy almost impossible as it has no tissue to attach itself to!  And then there is PTK (Phototheraputic Keratectomy) laser treatment ( more detailed information can be found here http://www.eyeresearch.co.uk/ptk.html )
Who knows what the future development of treatment holds!

Day to day prevention has many different forms depending on the individual sufferer. My husband and 13 year old use Lacrilube ointment before bed as it's thick and lubricates the eye for a longer period. Our son also uses Lacrilube once during the day at school to keep his eyes lubricated (what with all that reading etc!) During the day my husband uses Celluvisque single drops in both eyes every couple of hours to keep the eyes moist, and has just started a trial period of Hylo Tears which offer moisture for a longer period.
My 8 year old uses Hylo Tears at night only needing one drop in each eye every night, reducing the need for intervention through the day, which is great for young children!
There are different types of Hylo Tears, ask your ophthalmologist which is best for you. 

If you are a sufferer of, carer/friend/partner of somebody with any of the above please contact me or my husband if you wish to discuss this any further, your not alone!
Though they are rare conditions you do not have to feel isolated, there are plenty of organisations and groups able to offer help, advice and support out there.
And don't forget to ask your ophthalmologist any questions about anything related, they are there to help!

Thank you for taking the time to read this blog :)


 

Coming of age, 30 something and beyond.

Well here I am, here we are, we made it!

You spend your childhood waiting for the next 'big' birthday wishing your tender life away, double figures, teenager, 16th, 18th, 21st then it stops. You don't really like the prospect of delving into real 'adulthood' its daunting and quite frankly depressing. But do we ever truly grow up in our minds? I'd like to hope not but that life makes us re assess the way we do things as we grow older in body to enable us to get through it. 

By now you may have acquired a companion, kids or may still be enjoying (or not) single life. Whichever of these your at Is where your supposed to be whether you like it or not.

So lets say your a parent, you find yourself saying all the things your parents said for example 'put that down, you look with your eyes not your hands' as you clearly ignoring this statement in a shop yourself, looking at something you know you cannot afford yet need to know the price.
Or 'you don't know your born!' What a stupid statement to make when clearly your child is aware they are a living organism as you spend 80% of their day making them wish they were not with all the 'rules and regulations'.
What about this one 'wait till you father gets home' ! Then what? What actually happens once the 'threat' has been made? Usually nothing due to our ageing brain causing us to forget the said threat and reason for it before he does return home.
You have a moment in the midst of all these illogical sayings when you stop, pause and realise "I have become my mother/father"

Then there is the wardrobe situation, when the fashion becomes too revealing at 'our age' or two young, or too uncomfortable. When is the actual cut off point? As your going through your clothing cull of band T-Shirts and  silly quoted ones or the slightly tighter than when you bought them dresses you spot it! There it is staring at you. You don't know when you bought it, where or why but you have it regardless! The 'uniform' item of clothing you acquire in your 30's . . . . . THE ALL WEATHER WATERPROOF WALKING JACKET!
I mean why did we never feel the need to be weather savvy or sensible before our 30's? When did we suddenly decide we needed this item and practically wear it at all times?

There are more serious issues we face and ponder in our 30's such as 'Have I enough money to secure mine/our future?' 'When will I be able to retire? Will we have enough money to retire?' 'What have I done with my life?' 'My bones ache' 'When did I stop being able to run anywhere?' 'My neighbours are possible Aliens with absolutely no degree of socialisation what so ever!' (OK maybe that last one was a slight exaggeration  but you get the idea).

Then it begins, the 'Sunday afternoon' syndrome! Not only do you fall asleep at the drop of a hat (also known as a Nana nap) , you feel it necessary to frequent garden centres and home improvement shops on this day of so called rest. You look at outrageously overpriced products to fill (clutter) your humble abode with, argue with whomever you went with about what colour, size or material and how many of each. You take a frustrating stroll through the Isles several times before finding what you want but don't actually buy anything in case you see it cheaper anywhere else!

And there is the 'drive' out. Not going anywhere in particular just 'having a look'. You used to take your kids to the park, the funfair, the beach. When did looking at a small village and churchyard become an acceptable trip out to children? You battle to stay awake all day and suddenly feel the cloud of Monday morning loom over you dragging you into a mild depression knowing it will all begin again tomorrow! Packing lunch boxes, getting uniforms and clothes ready for the next day, realising there is no milk 5 minutes after the shop shuts early as it's Sunday.

But despite the negative thoughts we persist on having about the day to day drudgery of life we can smile and fill our hearts with the knowledge we have made it this far, we are survivors, winners and amazing human beings.

Thanks for reading!

Elderly.

Working with the elderly is somewhat of a challenge both mentally and physically, you could almost class it as manual labour!
The miles you walk in the care homes, the bending, the moving, the washing, the toileting the feeding, the laughing, the crying, the consoling, the arguing, the loving and the dying.

I chose this career as I have always been a mother hen and started my career at 17 years of age, and cannot see me doing anything else, unless of course I get a lucky break and fulfil my dream of becoming a published writer of course. And unless my Arthritis wins the battle with my body.

Full moon I kid you not turns the old dears into insanely strong, will full, Un co-operative monsters! There is no reasoning with them, they say its blue when it's red, they say it's time to get up when it's 2am; my tip is just go with it, let them win because you sure as hell won't!

Then there is another side that people forget about the elderly generation. They once played as children, they once fell in love, got married had children. They came through the hardest times that have been to date. You wouldn't get today's families surviving on powdered egg and milk!

When I look into their eyes I see a story that needs to be told, an existence that should be acknowledged a wisdom that is far greater than our own. I see the vulnerability, the loneliness, the need for companionship and just 5 minutes of your time to tell that story again.

It makes you stop and think about your own mortality, your life, your achievements, regrets and also your future. What will we do to make our lives worthy of talking about when we are elderly to our younger generations?
My view on this at this present time is how people have rather than evolved, regressed to animals.
We fight, we hate, we disrespect, we push and shove, we rush, we are greedy for more, we don't help but put down, we don't share we take. Is this what civilisation has taught us? It really is becoming a world of 'dog eat dog'.

Look back at when our elderly generation were young. People helped each other, communities pulled together, generations lived together, kid's actually played out! People pulled together and genuinely tried to help. Not these days, it's each to their own, neighbours hardly speak none of this baking cakes for the newcomers in the street.
It saddens me to see this disappointment in their tired eyes, the sorrow that the human race is ruining the world and itself.

The carers famous spoken line 'I won't be a minute!'

That minute can be a literal minute or a very long minute. You get called away, you deal with lots of tasks at once yes, that famous minute is promised by all at some point.
When that minute actually comes round you spend every second of your time with that individual making them feel safe, clean, loved, important and special. You listen to that story again, you honour their dignity with the uppermost respect you listen to what they want and you give your heart to that one person for however long it takes to meet their needs.

It's not an easy job I will admit but It's rewarding, satisfying, humbling and an honour to care for these pillars of community and all life.

They are some body's someone, they are the families glue, they are caring parents, grandparents, siblings and friends.
Yes even the ones who moan on the bus, in the shop, take far too long counting their change at the front of a very long line, walk zigzag in front of you in a busy shopping centre, demand respect when they don't give it (hey they have earned a lifetime of credit for the odd push in and bad manners!) and expect everyone else to move out of the way all of the time.

Take time to listen to them, you could be the only person they speak to all day, all week, you may be the last person they speak to!
Take time to smile next time you see an elderly someone in the street and remember they were once like you and they would give anything to run for that train or bus, to wear heels again, to dance again, to hold a lovers hand again.
This will be you one day feeling vulnerable, weak and Un-noticed. It costs nothing to smile and say hello, to help with the change, to restore their faith in human kindness does it?

Remember ,ring Nana or Grandad! It's well overdue you will make their day.

Thanks for reading.