A bit of an explanation …   Leave a comment

Pre Amble                                                                                                                                              I think it is fair to say that the only noticeable thing about my blogs since late 2016 is the reduced quantity and quality!

In April / May 2016, I was on a bit of a high,  personally and professionally. I had held a very successful celebration event to mark my retirement from registered childminding; had been on an inspirational trip to Germany on a trip to Keilhau to re-discover Froebel (or in my case to discover for the first time); was involved with my volunteering for early years membership organisations at national level, and working in partnership with some of the key people in the early years field; and although unable to publically say so had just been informed that The Queen was awarding me a British Empire Medal in her 90th Birthday Honours in June 16, for my volunteering and contribution to Early Years.

Life was pretty good – especially as at the time I was not taking any medications for my diabetes and had lost a lot of weight.

Then things started to go downhill and life was far from good.

My Story                                                                                                                                                  There are two parts to my story, one part is about something that happened which had a huge impact on me, and the other about my health and the impact this has had on my career, on my volunteering and on my future.

The first part of my story is fact and anyone who understands the impact of stress will understand the  huge impact this had on me.

I was reported to the Disclosure and Barring Service and it was stated I should be barred. I am sure everyone can relate to the stress this caused me, as it suggested I was not fit or safe to work with children, despite a 30+ year unblemished  track record of looking after children and being a volunteer within Children’s Services.

Don’t get me wrong ALL allegations should be investigated and in my case I am glad they were because no charges were made, I was not Barred and in fact I was reissued with clear DBS record  almost immeadiatly (although it took a year to receive the ‘nothing to answer to’ letter).  However, the thought that anyone would even think I could harm a child in anyway. still haunts me, as do the consequences of the allegations at the time.

One impact was on my volunteering, as being who I am and with my personal ethos, I contacted all the organisations and individuals that I worked in partnership with at that time, and told them to cancel my membership and to distance themselves from me because I had no idea what was being said about me, if the truth would be established or not, and therefore did not want to risk any ‘by association’ negative impact on those organisations. who had always valued me as a volunteer.

NB Now my name has been cleared, I have re joined all my membership organisations, and continue to work in partnership with them, even though my ill health prevents me from being as active in my volunteering as I would like to be.

The second part of my story is about my health as throughout the traumatic experience of the allegations,  I was becoming seriously ill.  In fact when trying to defend my position through various appeals,  I struggled to physically move, was in extreme pain and as a result on high doses of prescribed morphine. It is fair to say that I was unable to adequately put my case as I struggled to remember small detail, struggled to think enough to string a sentence together and as a result did not put my case forward robustly enough. Although I did manage to clear my name and prove I was not a threat to children. In fact children remained in my care during that time, which was evidence that even before DBS had finished their investigation, I was not considered a serious threat to children’s well being.

It is hard to explain how  terrible the situation was, being so ill and worrying what was wrong with me (as the doctors did not know) and trying to defend  my reputation and livelihood.

By late 2017, I still did not know what was wrong with me,  I could not work  as by this point I was unable to think or move or control my body functions. To make matters worse because no one knew what was wrong with me I could not claim benefits (not enough ticks in the right boxes).

Then in early 2018 I saw a new consultant who diagnosed that I had Diabetic Radiculopathy which is very rare and not much is known about it – only that have to manage the pain so don’t become permanently disabled  through lack of movement, and that eventually most people do recover from it.

This meant I was finally able to apply for benefits and was awarded max PIP and the extended EESA – although not enough to live on, it is enough to make a difference (with Garry’s wage) between surviving and not surviving.

I have to push myself everyday to do just about anything and everything, the pain is at times unbearable, but I was (and still am) determined to a) come off the morphine, b) improve my mobility. The good news is I am reducing the morphine – very slowly and  with help from my GP who has been very supportive, phoning regularly for updates and to advise me. I have gone from a high of 240mg of morphine a day,  to now just 50mg a day, although it is a struggle and I often need additional pain relief to get through the day – but at least now on a much more acceptable long term dose of morphine.

With mobility things are improved but I still struggle to walk and still use mobility aids most of time. Balance is not good, flexibility is not good, strength is still weak and I tire very easily. However, I am confident that ‘ baby steps’ forward will get me there in the end. The frustrating aspect is when I have set backs, which happen quite often and always happen whenever morphine has been reduced, at these times I can get a bit depressed and worry that having taken a step or two backwards, that I will keep going backwards not forwards. As I write this blog, I am in a lot of pain and really struggling as last week reduced morphine – but I must try to be positive as I really don’t need to take any tablets for depression (my doctor actually recommends ‘pick me ups’ of chocolate, cake and socialising) but of course this impacts on weight and glucose levels.

The reason I do not want to take any more pills is it has finally been agreed by doctors that I react negatively to most drugs ( I always have but it has been difficult to prove this). In fact the Diabetic Radiculopathy was caused in Feb 2017  by going back on insulin, and my body’s reaction to it – proof in itself  that insulin does not work for me.  A couple of weeks ago I took myself off insulin, because it was slowly making me ill. This is the third time I have done this in recent years. So I know the scenario now – Glucose goes up, doctors insist go back on insulin, it works for a month or two but then glucose goes up, insulin ineffective, I become ill with brain fog, general fatigue and more – and I put lots of weight on in a very short period of time.

My GP and consultant are fully aware that I have come off insulin and are supporting me but the bottom line is if I can’t control my glucose levels through diet (trying  a low carb diet) and increased exercise (difficult at the moment as can’t do much), then sooner or later damage will occur to my major organs and I will have to consider going back on insulin knowing full well what might happen.

My GP says I need to consider my quality of life, and at the moment being off insulin does give me better quality of life, but in the future I will need to make difficult decisions. Being stuck between a rock and a hard place comes to mind.

Recently I have started swimming (well more of a desperate doggy paddle, as can’t extend legs or arms to do front or back crawl), and even standing in the water knocks me off balance, so I have to stay in the lane by the wall! Not even had the induction for the Gym yet because although part of my membership, the trainer took one look at me and said ‘we will leave this for another day’! However, it is a start and does help me be more physically active on the days I am well enough.

 

All of this lack of physical mobility, pain and low income means I can’t attend many conferences or meetings either locally or nationally.  My volunteering and advocacy has almost completely stopped, and that depresses me because volunteering and more recently campaigning have been a huge and important part of my life.

On the positive, I am becoming involved with my local Home Start and I am applying to become a Trustee, so if successful, this will help replace my national volunteering, and my sense of well being.

Over the last 18 months I have been supported by many friends and colleagues with some going out of their way to stay in touch via emails / social media and phone calls, and some travelling various distances to pick me up from home and take me out for a few hours. I have loved being able to keep in touch and in a small way to feel still part of the early years world. Thank you to those friends and colleagues – you know who you are. If you are not in touch with me, and would like to renew connections, or make new ones, please do get in touch via email, phone or social media as a chatty email or phone call, or a few hours out of the house really does make a difference.

However, some have stopped engaging with me, stopped sharing with me. I no longer get hundreds of emails;  many no longer re tweet my tweets or share my Facebook posts. Although this greatly disappoints me – I do understand this – I am not up to speed; I no longer have new information to share;  and as I said at the beginning, my blogs are noticeable for their absences. All of this saddens me as I still think the same, I still have an opinion but due to circumstances beyond my control it is very difficult to remain involved, or to continue sharing because of the ‘morphine fog’ in my brain that I have to live with.  As a result I am no longer a leading voice for childminders or within the early years sector. I am not sure I will ever regain ground lost……

…….. BUT I am not giving up, I have a number of blogs on my list that I want to write, it doesn’t really matter if no one reads them, writing them will be enough.

This blog is the starting point of my attempt to rediscover myself;

I want to write about my last networking event (which was good but lacked various things because I was too ill really to do it justice) In particular I have lots of information about the early days of the membership organisations that people have shared with me and I want to make this public. Not sure how long it will take me to publish all the information I have, as much of it needs collating and actually typing into a blog, and many days are still really difficult.  It may take to the end of my days if the morphine fog does not lift, and my hope is that over time people will help me with my self appointed task – and if I don’t finish it, take it on when I am no longer able to. Not that I am planning on disappearing from this world anytime soon, but I have to be realistic about my health.

I want to blog about the Pre School Learning Alliance AGM and conference in June 18, – and in particular about the question I asked Amanda Spielman – and she avoided answering by saying was a comment not a question. It most certainly was a question.

I have a couple of blogs on reviewing products – one has recently been published  and hopefully the other will be written this week.

And of course I still feel very strongly that past and current Government policy is failing our children – in fact failing to safeguard them in the widest sense, and I want to comment via my blog.

So that is my explanation of the last 18 months;  what the future holds I don’t know but I really hope to find a way to  re engage fully with the early years sector, and to find a way to resume my volunteering and campaigning at national level as well as local level, so I can make a difference to children and families.

 

 

 

 

 

 

Posted September 4, 2018 by psw260259 in My thoughts on current childcare issues

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