In memory

It's been snowing here lately.  I love snow - I find it extremely peaceful.  I think this is because on my birthday 4 years ago the woman I loved most in this world; my Nana, passed away.  It was the worst snow we have had for years - we did not know if we were going to be able to bury her but all I could think about was how peaceful it was.  How still and pure and white.  I remember going out for a walk the night she died and staring at the sky.  I was looking for the brightest star as ever since I was a child Nana would tell me that the brightest star was the person you loved the most shining down on you.  The snow was billowing down and I felt such a sense of peace.  Even although my Nana hated snow I believe it was a symbol to me that she was at rest and peaceful after a long battle. 

My Nana and Papa meant the world to me, I lost my Papa 7 years previously just before I got married.  Again it was very wintry - and a hard frost.   My Nana nursed my Papa through Parkinson's and Alzheimer's, a horrendous journey but one that she faced with such courage and determination regardless of her own disabilities.  They taught me what love means - that I am sure of. 
I was looking through my most precious possession tonight which is a little book of poems and verse's that my Nana kept at the side of her chair.  She used to write in it a lot, and it is full of the most inspiring little poems.  It literally saved me after she died as every time I read it I feel as if she is here with me.
Anyway - I found this poem which as I can't find anywhere on the internet - I am assuming was her own creation  - it's about Alzheimer's and Parkinson's - although I now believe that Papa had Lewy Body Dementia.

"Where have you gone to my husband, locked in your Alzheimer's shell.
Your dead eyes can only look forward to your own particular hell
You used to prowl like a lion now you merely shuffle along
Like a ship without keel or udder - shall we ever know what went wrong?
You died long ago my darling, I can only remember and sigh
Perhaps in your muddles perspectives - you get echo's of good times gone by. "

In loving memory of Nana and Papa who I dedicate the opening of my new social enterprise The Hope Café Lanarkshire to.
"The good we do is never lost, each kindly act takes root.  And every seed of hope we sow in time will bear its fruit"  From Nana's book

The importance of Self Advocacy & Education - Response from Patient Opinion Post

Recently I posted on Patient Opinion about my experiences of trying to access treatment to help me manage Early Menopause which you can read here if you so wish.

Patient Opinion is an excellent vehicle to exercise your self advocacy skills - it can get your voice heard and also let others know that they are not alone in the trials that they face.  It is also an excellent way to give good feedback - something that isn't given often enough. (reminds me to post about my wonderful GP)
I continued to chase up NHSGG about this appointment and lack of follow up, and I did eventually receive an appointment letter on Friday.  I also received a response via patient opinion that day.  Yesterday I took a call from a lovely lady who asked me to explain to her my frustrations.  I explained that firstly it was disappointing to be told that someone will be in touch in a few weeks and then have no response for months, regardless of chasing it up.  She agreed this wasn't good practice.
I then explained (as per post on PO) that I felt that the professional who dealt with me was imposing her own personal views on HRT upon me rather than fact.  Not having been in the consultation - she couldn't comment which I understand.  However this is when things started to go a tad downhill.

She then asked me to understand that the Dr may have been reluctant to provide treatment based on 'the risks' associated with the treatment.  I pointed out that it has been proven that there is more risk to someone my age NOT taking HRT (British Menopause Society & International Menopause Society), and repeated again that I have thoroughly researched this area.  I also mentioned that I am part of Menopause UK Network, and we have been inputting into the creation of the new NICE Guidelines to help ensure that women's voices and their lived experiences are being heard.  The initial scoping has just been completed and we will be playing an active role in the development of these guidelines.  She questioned the validity of various pieces of  research, stating she used to be an advanced nurse something or another.......and questioning if I was and I quote "medically trained"

SO here is my point - it has absolutely no relevance if I am medically trained or not.  I am living with this condition day in and day out and have been doing so for the last 4 years.  I also happen to be someone that I would deem to be well educated both academically and more importantly in valuable life experience.

This is the best way I can think to compare it to try and get medically trained staff to start to LISTEN to their patients living with long term conditions:
Before I had children I worked in early education, I spent all my days working with children.  I thought I knew all there was to know about children.  I read more books than I care to remember whilst I was pregnant with my own children.  I considered myself to be an EXPERT when it came to children.  BUT - and it's a big BUT.........when I had my own children I suddenly realised no amount of education, experience or books could have prepared me for the real life experience of actually living with children 24/7.  Do you see what I mean?

So Dr's and other medical professionals I am asking you from the bottom of my heart - please start to listen to and work WITH the people you are supporting who are managing long term conditions.  Yes you are the expert in your medical field and we respect you for that.  However  people like me who are living with a long term condition - many of us are experts in our own lives.  Please respect us for that.  As my good friend Chris Young would say "Walk a mile"

I'm unsure how I feel about the outcome - I will wait and reserve judgement after my next appointment.  However I do feel strong and assertive, as I have educated myself well with the fantastic support of my GP and my peers.  Knowledge is power when applied - and believe you me I will be using all my self advocacy skills and knowledge to continue to fight for my right to access good treatment.  I'll keep you posted ;)

Oh and if we have ladies reading this who would like some invaluable peer support to help them manage Early Menopause please visit Daisy Network,  Menopause Matters, Hyster Sisters or our friendly peer support group on Facebook

Lessons learned in 2013 - what life with WRAP has taught me

Before we enter 2014 I wanted to put my thoughts down on paper about how WRAP has helped me learn a few things this year.   For me WRAP isn't about the 12 page booklet I completed when I first completed  WRAP training.  Its so much more than that.  It has completely changed my outlook about life.  Here are some of my reflections from this year.

 

 

The past is an immovable object.  There is not a single thing I can do about the past.  Its gone and I can't change it.  There is no point in wishing things were different, or playing over and over again in my mind how I would have done things differently.  It is pointless, draining and very detrimental to my health.  I have to accept the past but learn to change the way I think about it. 

 

 

Its okay to ask for help

 

 

True friends are worth their weight in gold  (Thank you  - you know who you are x x x x)

 

 

 



 

I cannot control other people actions - I can only control my reactions.  Their actions is their Karma, my reaction is my Karma. 

 

 

 

Anger, although a normal reaction is not a healthy reaction.  Don't hold onto anger.

 

 

 

Everyone deserves a second chance - but not everyone deserves a third.

 

 

 

 

Don't let anyone else define you - you write your own story. 

 

 

 

Listening is the most powerful tool we have when battling with mental health issues.  Listen to yourself and afford others time to really be listened to.

 

 

 

 

Sometimes I don't know the right answer - that's ok.

 

 

 

There is always hope

 

 

 



 



WRAP really really  has enabled me to take control of my own life.  This is a very unusual feeling - and one that takes a while to get used to as anyone living with a long term condition will tell you that it sometimes feels like you are out of control of your own life.  But this year - especially the last 6 months I have really felt able to play an active role in my own life and own wellness.  WRAP has been a process that has enabled me to become very self aware, and as a result of this I feel much more in control of my own life.  It pulls together all my ways of managing and coping with the challenges life throws at me, and truly learn from them in order to move forward positively. 
 

2013 hasn't been the easiest of years and has seen some huge changes in my life.  But I am looking forward to moving forward and creating new positive memories.   My New Years Resolution for 2014 is quite simply to be happy and find something to smile about each day.
Wishing you all a happy, health and hopeful new year.  Donna x x x

WRAP Reflections

I have been thinking alot lately about Wellness Recovery Action Planning.  It has been a big part of my life this year.  I have facilitated many WRAP workshops this year and each one has been unique yet wonderful in its own way.  The people I have the pleasure of meeting and sharing stories with truly inspire me beyond words. Being around WRAP so much has made me ask myself ............do I practice what I preach?? 
This year has taught me that I mostly do but I don't always - but hey who does??   But what I have learnt is that when I do - it works. 
I have learnt a very very valuable lesson this year - your WRAP needs to change and adapt as you change and adapt.  My life changed tremendously this year.  Work changed, situations in my personal life changed, my health changed and home life as I have known it for 8 years changed when my youngest baby boy started school.  Strangely the one that hit me the most was the latter.  The other stuff  I could actively do something about but there was nothing I could do to stop my baby leaving and walking through the school gates in August.  I didn't fully understand why it was so difficult as I knew it was going to happen, and I was actually quite looking forward to some 'me time' during the day with plans of lying watching TV, lunch with friends etc .  But when the little man walked through those gates and I went home to my empty quiet house a sadness like I have never felt in along time engulfed me.  They say it takes one thing to push you over the edge - maybe that was the thing, who knows?? 
Anyway - I guess what I'm trying to say is that we can't always plan for how we feel, I don't have an action plan in place for every eventuality.  But what I did learn is sometimes I can't change what happens - I can only change my reaction to it.    For a few months there I was slipping down a hole that I didn't want to, regardless of trying to implement my wellness tools.  It took me until the end of November to realise that I needed some new ones. 
I also learnt that not every negative emotion needs a label.  The feelings I were experiencing were a completely natural reaction to a situation which was triggering for me - but I panicked because I didn't recognise fully that a trigger had occurred.  It was labelled depression as it persisted for more than 3 months and it was very unpleasant and distressing.  Funnily enough - anti-depressants didn't help. 
Now that I am thinking a bit more rationally I can see that the issue wasn't starting school - it was the fact that starting school signalled the end of my 'baby years' as I call them.  I cannot have anymore kids due to health issues and this was the real reason that I was so upset.  So  - new wellness tools implemented - weekly counselling sessions to talk through my thoughts and feelings, lots of 'big boy' fun activities,lots of family time and a new project to throw myself into has really helped.  There is no medication that can deal with these things for me, but I have learnt that I can deal with them when I look deep inside myself and find the answers - WRAP helps me to do that. 
I have made a lot of changes to my WRAP by reflecting on my recent period of feeling unwell.  Every experience really is an opportunity to learn
D x

A year in the life of a MacWRAP Facilitator

Taking some time to reflect on my journey with WRAP in the last 12 months.  Firstly I will say that I consider myself to be extremely lucky that delivering WRAP is the bulk of my 'work'.  It never feels like work because I love every moment of it.  Each and every WRAP that I have facilitated has been completely unique - the people I meet are unique and they inspire me so much.  They do say choose a job that you love and you will never work another day in your life - I think this is true :)
My journey with trying to embed WRAP in my local community has not been easy.  But slowly with perseverance and determination its starting to happen.  Here is a recap of the last 12 months activities:
7 WRAP Level 1 workshops facilitated
3 WRAP sessions facilitated as part of clinical trial via Stirling University
81 participants completed workshops
1 online WRAP Facilitation (numerous participants)
1 Twitter intro to WRAP
WRAP Blog
3 WRAP Awareness/Information Sessions Facilitated
2 Scottish Recovery Network WRAP Facilitator Network days
1 brand spanking new charity established to further embed WRAP in local community
Accepting Alliance Scotland Best Self Management Resource 2013 Award at Scottish Parliament on behalf of SRN Quality Assured WRAP Facilitators

And I'm very excited to say that in the next 12 months the following is confirmed:

4 WRAP workshops facilitated for local organisation Now Yer Talking - for anyone in the local community to access for free (for more info visit NYT website and give them a call http://www.nowyourtalking.org.uk/about.html )
12 monthly WRAP drop in sessions
2 Day WRAP workshop for University of West of Scotland 3rd year nursing students
WRAP for Carers in Lanarkshire (visit http://www.prtlcc.org.uk/ for more info or follow on twitter @Lan_carers )
Embedding WRAP in local communities in Lanarkshire via The Hope Café Lanarkshire SCIO44352

and in the pipeline................
WRAP delivery for Glasgow Caledonian University
WRAP delivery at Abertay University

Each and every WRAP that I deliver I give 100% and it's reflected clearly in the fantastic feedback.  I will try and post the feedback reports.  Some feedback:

“WRAP is a very powerful and useful tool for self management. I can only fully endorse that people are the experts in their own recovery. The Principles are a solid framework for effective use in recovery and maintaining wellness. The anticipatory and reflective part on crisis within this model is unique and important; reflecting the value of the individual. This tool has great potential on a professional and personal level.”

"I wish I had this years ago when my mental health was bad and I couldn’t find a way to break the circle"

"Wrap will be a positive influence in my life - it has given me new idea's and increased self awareness"

I'm excited and so very hopeful about the future with WRAP  - remember keep following #MacWRAP on twitter for WRAP info here in Scotland

#Winewednesday - Depression & Personal Responsibility

Today is 'wine Wednesday'.  This is the one 'school night' that I allow myself to sit down, relax and have a glass or two of wine.  When I completed my first ever WRAP I had wine right up there in my wellness toolbox - I enjoy it and it makes me feel good.  However - as I started to learn more about myself through living WRAP it became very obvious very quickly that wine wasn't always a wellness tool.  Infact  - more often than not it was an early warning sign - and could even be a trigger.
For example - how many of us have come in from a crap day at work and thought - I'll have a wee drink to relax??  Lots of us. Then before you know it you are having a 'wee drink' almost every night to 'relax'.  So - I now recognise that if I am feeling that I NEED to have a drink to relax - then its not a wellness tool - its an early warning sign that I need to be dealing with whatever is causing me to feel low, anxious or worried. 
It can also in itself be a trigger - especially in my experience if I am already feeling low.  Feeling the way I have been  lately - it is very tempting to reach for a glass - as it gives me that lovely cosy glow where the world doesn't seem to grey....................for about half an hour.  So my way of taking personal responsibility has been to create 'wine Wednesday' - the day where I allow wine to act as a wellness tool - and I do not allow myself to do any work of any sort past 7.30pm. 
I am glad to say that I feel as if things are on the up.  I'm still not 100%  - but i'm 73% which is better than 70 % for the last few weeks.
Onwards and upwards thanks to my pal WRAP :)

Hello Depression..............it's been a while

So.....a few months of teetering around early warning signs has progressed to the next level. As WRAP is such a personal and unique tool - my signs may seem strange to others - but are relevant to me.  I'm used to fluctuations in my anxiety levels - I know that this is a very very common symptom of Early Menopause.  I'm even used to dealing with fluctuations in mood - that are not necessarily reactive to the world around me.  I am - and always have been incredibly hormonally challenged.  There is lots of new studies out there that are showing that women like myself who experienced PMDD (Pre Menstrual Dysphoric Disorder) appear to have different brain wiring, that's the best way I can explain it.  And it is something that I have always known about myself as I respond very unusually to drugs that have absolutely no affect on others.  I'm convinced my brain wiring is a bit higgilty piggilty!! 
Anyway I have many early warning signs - but what my WRAP helped me to learn was that it's how long these go on for - and how intense they become that is the key to me managing any further decline.  So this low mood and higher than normal anxiety has been hanging about for a little bit too long for my liking, probably around 3/4 months now.  And I knew it was time to take action when I found myself wanting to stay in bed all day more than 2 or 3 times in the last few weeks.  Looking back I think it was triggered by a couple of things happening at once; losing my job suddenly and unexpectedly, finding out that people I thought were my friends and cared about me obviously didn't, and a few family things that I won't go into.  So I'm not 100% surprised that I'm where I am today but I would be lying if I said I wasn't a tad disappointed.  I work very very hard to stay well, I am very active in my own care and am very lucky to have a fantastic GP and circle of support.  So why have I succumbed to this low mood?  But then I get my sensible hat back on and remind myself to practice what I preach.  Depression can happen to ANYONE at ANY TIME.  Chuck Seasonal Affective Disorder into the mix and BOOM!!
The good thing is that this time I'm entering this battle with hope - as I know that things will get better.  I have already been very pro-active in taking personal responsibility for the things that I can - using my lightbox, removing all unnecessary stresses/anxieties, implementing lots of wellness tools.  And I have called upon my supporters to help me in the ways that they can.  I have made an appointment to talk with my GP about a plan of action. I am aware that this may involve taking a course of medication - so I have done my research and looked into what my options are (Education).    
I'm actually really interested to see where WRAP takes me with this episode - as this is the first time that I have reached this stage since I fully embraced WRAP into my life.  And WRAP definitely hasn't failed me - infact I'm pretty sure that it has saved me.  Heres to recovery :)