Thursday, 27 March 2014

Sunshine

There are times in life when you feel blue..
BUT it can be turner around - I find it's the little things in life that can pick you up this happens.  So I thought I would share with you 10 of mine (in no particular order of importance I hasten to add).

1.)   The white feather that I found and swear it was left for me by mum :)
2.)  The "Bravery" giving key given to my by Tasha (also has my lucky number on the reverse side).
3.)  Rainbows, cos they are just so pretty.

4.)  My new tablets - that make me sleep.

5.)  My family - they are super "special"!
6.) Our dawgs, Taylor, Skyla-Minx and Loki
7.) Cadburys chocolates (any kind)

8.)  A nice glass of wine - cheers!


9.) Reading one of my Terry Pratchett books (and admiring the collection as it grows).

10.) Snuggling under a Slanket

x~X~x

Wednesday, 26 March 2014

Accepting help

Today I returned to my GP, with The Dave alongside me because after 7 months I am still feeling exceptionally physically unwell with recurrent infections, temperatures, aches, pains, mood swings etc.  The above diagram pretty accurately describes the situation I am in. I have developed insomnia and manic behaviour which has rendered me in a position where I am struggling to cope.  The past 6 years have been incredibly tough on us as a family and the stress has built year on year resulting in me realising that I can't carry on alone and that the time has come to accept help.  

The minute I sat down in the GP office I burst into tears and was mortified by my complete loss of control.  Thankfully, The Dave stepped in and spoke to the GP on my behalf whilst I gathered myself together until I was able to contribute.  I have been stubborn, insistent on  refusing help and battling on regardless, trying to be all things to all people, which over time has chipped away at my physical and mental health leaving me in the situation I am now in which is exhausted, physically & mentally depleted, highly emotional and bordering on manic behaviour.
Stress combined with depression can creep up on you before you realise it, you think you are coping well and con yourself that you are managing when in reality you are on your knees, frantically holding on by your fingernails in order to get through each day.  It took my daughters and husband to stop and tell me they were worried about me for me to take stock and accept that the strongest decision I could make was to accept that I was struggling and needed help and to go and seek the support I need.  
My GP was wonderful, she listened, was attentive and empathetic and didn't make me feel weak or judged.  She acknowledged my reluctance to commence antidepressants but managed to make me realise that it was my best option along with some psychological support to work out coping strategies.  The situation we are in as a family is not within our control and the stresses cannot be avoided or removed.  Sadly, due to my numerous allergies the only antidepressants that I don't react to have a side effect of stimulating the appetite (arghhh!) BUT with the support of my local slimming club I am being helped to tailor a eating plan of food combinations that won't put on weight but will satisfy my stimulated appetite.  

The referral for both myself and The Dave for psychological support has been sent in electronically today.  Soon we will be helped to find a way to live with the various issues thrown up by the ongoing multiple chronic illness, anxiety, depression and panic we are coping with.  The waiting time is short and so we should be able to access this help very soon.
Life can be a bitch, it throws things at you relentlessly and can leave you feeling you are drowning and have nowhere to turn.  Realising that you are not alone is the first step, then the next, harder step is to learn to accept help and to stop saying you are "fine" when you aren't.

Today was the first step.  We are taking it one day at a time, slowly, hopefully, things will gradually get better.
x~X~x










Saturday, 22 March 2014

If I had a wish...

How many times have you prayed to be granted just one wish?

Over the past 6 years I have often wanted just one wish, to have my family healthy and to be able to live normal lives, just like everyone else.  Am I selfish? Possibly I suppose, but I am sure that everyone with a sick family member would wish for the same.

Yet, and I surprise myself here, I wouldn't wish that ME had never entered our lives, the cancer - yes in a heartbeat - I would wish it away and that my mother was with us still.  But the ME - although I know it sounds crazy, I wish it gone but not that it had never been.  Why? - Because it is through the girls becoming sick that we have found strengths within ourselves and a intimate closeness as a family that we most likely wouldn't have discovered otherwise. We have also met some wonderful people within the ME community that I hope will remain life-long friends.  The girls have also found they have talents which most likely would have laid undiscovered had they been able to live a full and normal healthy life in mainstream education, following a full social life and the ordinary curriculum offered within the school.  It was being forced to lie in bed and not being able to have the energy to do anything much at all that they discovered their artistic talents.  These talents could quite easily become their living as they get older.

So, what is the point of this blog - it's for me to share my hopes, dreams and desires - our lives with chronic illness, the peaks, the troughs - good times and bad and a place to think aloud and share my ideas with you and call for your support when I can.

I participated in the "naked" selfie for Breast Cancer Awareness - I have sadly been aquainted first hand with a number of close family members and friends who have suffered from this disease - some won and some lost their battle.  My mother, grandmother and more close family and friends also suffered from other forms of cancer - again some lost and some won their battles - so cancer has played a major part within my life.  

So where is all this going - the talk about cancer awareness? Well, there have been discussions within the ME community about ways in which to raise awareness and funding for Invest in ME and biomedical research into treatments - it was decided that we could jump on the selfie bandwagon and adapt it a little - to take two photos side by side - one depicting your ME (or if you are a healthy friend/supporter how you are first thing in the morning) and then one of you dressed up, with make-up on if you wear it and your image that you show to the world (for ME peeps this is usually their "mask").  Then to ask for folk to send a donation to a 70070 text number to help raise funds towards research, also asking ME and well friends to join in and participate too.
Now, for us as a family we have a dilemma - we are walking as a family as a team for the Walk for ME 2014 event, raising funds for Invest in ME Research.  PLUS Keisha has set up her fundraiser to cut off all 45 of her dreadlocks and dye what is left of her hair blue for Invest in ME too.  THEN there is another text code for the selfie event, all 3 have funds going directly to Invest in ME research though - so what do we do?

My proposal is - for my friends, family and anyone else who wishes to support us or participate to take their selfies and to put up their photo and the details of our two  fundraising text codes (one for our walk and one for Keisha's event).  Then to text either £1 or £2 to each code - to make a total of £3 (so the same total as if you had texted for Balls or BEAT for the testicular or breast cancer selfies).

My photo is showing me asleep - I hope it portrays my exhaustion, I am currently suffering from what is presumed stress induced illness and depression due to the ongoing health issues within our family - as I said earlier 6 years and counting.  If this illness does not improve then it could well end up, several months down the line, being a diagnosis of CFS/ME - if that is the case it would bring the number up to 3 out of 5 of us in our family having ME.  The second photo is of me all washed and dressed smiling and showing the world that we're okay and coping - really!  As always, I have my faithful friend, my gorgeous 4 year old Border Terrier dog, Taylor (he was given my maiden name, in memory of mum) with me.
The text codes for donations are:-
 
So back to my one wish, *closes eyes* I wish for a cure for ME and my family to be well again.

Please could you join us in getting this ME Selfie to go viral, to raise funds for research to find a cure and increase awareness about this illness.
That is my wish
Thank you
x~X~x




Saturday, 15 March 2014

Keishas phenomenal decision

My eldest daughter has made a phenomenal decision to chop off her dreadlocks in order to raise funds on behalf of her sisters for Invest in ME Research.
 
This is no small act - Keisha's dreadlocks are a fundamental part of who she is, they are her babies and she loves them dearly.  Once she has cut off her dreads at the base, all 45 of them, the small amount of hair left (we guess approximately about 1.5cm-2cms) will be bleached and dyed blue for M.E. Awareness week.

I have written a blog via Let's Do It for ME which I ask you to re-blog and spread far and wide if you could.

Thank you in anticipation.
from one very proud Purple Mama
x~X~x

Friday, 14 March 2014

Progress

Last week was quite simply pants because I had to spend most of the week in bed with flu and a raging fever feeling like a wrung out dishcloth.  

Thankfully, this week the fever has left me but just so I don't feel too lonely it made sure a cold and husky throat remained to keep me company (how kind!).  At the start of this week The Dave and girls couldn't help laughing at me, as my voice kept disappearing and coming back with the odd squeak, much to my annoyance (as a control freak not having the use of my voice with which to bark out orders to the rest was mightily inconvenient and a great verbal holiday for the rest of the family). The squeak then developed into a new deeply unpleasant man voice, all be it one that sounded as if it had smoked heavily all it's life.  However,  I am pleased to say that today I have a voice - a little wobbly and husky but still a usable voice which is also no longer a chesty manly one too - thankfully.

This week has not only seen the start of a recovery from flu but also some real plans for the girls healthcare.

On Monday we went with my eldest for her review with the psychiatrist, where we discussed her urgent need one to one therapy whilst waiting for the specialist therapist to become available (long 6 month waiting list time) and so this is now being organised via CAMHS asap to hold her in the interim (although there will also be an inevitable waiting time) and thankfully the change of medication should soon start to show some effectiveness over the next few weeks, as it build up in her system.  We had some very interesting discussions and the upshot was that we feel that we will also benefit from revisiting family therapy -  not the usual format (as we had in the past) but with our lovely liaison worker (guided by the psych), to make the atmosphere less intimidating no two way screen or listening support workers either and to use modelling clay, paints etc during the sessions to keep it informal and light whilst talking about the more difficult issues.  Starting it all in a fortnight - so hopefully that we will all benefit positively from this.

On Wednesday morning we had a massive team meeting to review and plan future care for both the youngest with regards to their mental health and ME issues.  It was led and chaired by our CAMHS liaison worker and supported by our pscyh and other therapist from CAMHS. Also involved were the Medical school team, and private Paediatric Consultant on speaker phone - with minutes being sent to the OT (who we had yet to meet) and our NHS Paediatric Consultant for middle daughter (who weren't able to make it due to work commitments).

Anyway - this meeting was the BEST we have had EVER - and that's something as we have been through years of meetings, reviews and assessments and never experienced anything as supportive and positive as this.

At the beginning The Dave read out the letters from the girls stating what they felt they needed and how they were both physically and mentally right now.  I hasten to add both girls were invited but were not well enough to attend on the day.

We then approached each daughters care plan individually, discussing each health care providers  vision of care - where we were now and how it could be made more holistic with cooperation from all the other elements involved.  Medical school stated they had an obligation to teach our middle daughter but had barely seen her due to ill health - so the psych said she would formally write a letter stating she was not fit for education of any kind and that would resolve that issue.  Our plan for the middle daughter was to work with the specialist OT to help her regain some strength and physical fitness and utilise her passion for art and photography as activities to use when pacing (instead of school work) and in conjunction with CAMHS support to build her up very slowly and gently.  Her therapist agrees that CBT would help with her anxiety issues and so the psych is pushing that referral through and in the meantime is going to spend more time with her to review her medications (which her Consultant feels may also need increasing) and get her current therapist to work alongside family therapy and the psych appt's until she is handed gently over in a slow transition to CBT as she gains some strength.  Our lovely private Consultant will also now slowly handover to our NHS Consultant who now has taken our daughter on (instead of his registrars who kept changing every appointment) - so that we will be working with a small team and always seeing the same people for improved continuity and communication.

For our youngest daughter it was mentioned that she was under a different Consultant and only saw his registrars, who again were always changing creating lack of continuity and progress. So our psych will be in touch with the hospital on our behalf and switch her across to see the same Consultant as her sister (and NOT his registrars) - as sibling usually go under the same doctor and will help minimise the different people involved and improve quality of care.  She is also being referred to the same specialist OT as her sister for rehabilitation care and her CBT referral being chased up (as we are in the position of having been accepted but not allocated a therapist yet).  Her schooling was also discussed and agreed to slowly increase her time at home with the home tutor, then move her to the hospital school room, still with one to one with her tutor from home and then build up her time and stamina there until she can tolerate 8 hours of schooling a week - when we reach that point it will then be a case of transitioning into mainstream school for her 4 hours of English and 4 hours of Maths lessons a week alongside her peer group and spend a few of the break times there too for socialisation.  This is obviously going to be a slow journey and will take months to progress - but we are being supported with this by the doctors, therapists and OT and so hopefully we can monitor her ME and try and prevent pushing too hard too fast and any major relapses (which have happened in the past and been so severe all schooling had to be halted).

The next meeting has been made for June with all the same parties being invited, also the NHS Consultant and OT hopefully being able to join us for that one too.

Then - on the same Wednesday but in the afternoon we met the OT (with middle daughter) who just was so kind, understanding, supportive and "got it" - such a massive relief.  She also said she would look out for youngest daughters referral and would definitely take her on and it should only be a matter of weeks before she would be able to see her too - so not too long to wait.  So middle daughter has a few charts to fill in (with my help) to get baseline abilities and has also agreed to go to the OT group once a week for an hour from 11am to midday on Tuesdays to do crafty activities with other girls aged between 14 & 19 years old - so a great age mix too.  Her pacing activity for this week is just to get up and dressed every day - nothing more, just that.  We have committed to attending the group and were told if she is feeling really sick just to take her in in her wheelchair and they would care for her - she wouldn't have to do any crafting but to be with them so they can see and assess her and then have the knowledge to then address her issues when on bad days.

Today though - is our biggest success (as she had been suffering days with constipation just when we needed a small poop!) - we managed to get a stool sample for middle daughter too - so we can send it off for testing to see if she has Crohns or Ulcerative Colitis.  Now we have to wait for 2-3 weeks to get the results as it gets sent away for testing.

ALSO - today my eldest daughter had a fabulous idea - she had bought a blank canvas and some childrens water based paints and wanted to make a piece of dog art!  So, as it was a lovely day outside today and eldest had the afternoon off College and we have no appointments to attend to - we went for it.  The youngest two were very tired and aching but managed to gather up some energy to participate (the warmth of the sun did help a little) and they proceeded to fill paper plates with paint, the dogs were then fed treats in return for having paws put in the paint and asked to walk on the canvas, it was great but messy fun!  At the end we all put our hand prints in each corner and finger painted our names onto the canvas too.  Then it was time for dog baths and for me to hose down the patio and decking!  Once the canvas is dry we will seal it and then it will be ready to hang.

Needless to say the youngest two are now pooped and fast asleep - most likely they will also get pem over the next day or so - but we have an album full of photos and a colourful canvas to remind us of the fun we had.

I won't share any more with you about our dog art day though as I my eldest has written a blog about it with more photos and so please read more about it (and see the adorable photos) here.
For the first time in a very long time, this week I feel that we have hope.

I am incredibly grateful to the team at CAMHS for streamlining our medical care team on our behalf and contacting all the necessary parties to ensure that the channels of communication are kept open and that everyone is informed and kept up to date with all treatments and care plans that are being made.

It has taken us literally years to get this far, we have been through a number of different departments and medical teams at the hospital in order to find the practitioners who are the perfect fit for our girls and we certainly couldn't have done it without the help from CAMHS and in particular our family liaison worker there who has been phenomenal. 

So whatever your circumstances are right now, however hard life is - please don't ever give up hope.
x~X~x





Sunday, 2 March 2014

Realisation

Today realisation dawned and when it did I felt as if I could cry an ocean of tears as sadness and grief overwhelmed me.  There is no specific point to this blog really other than for me to get this off my chest, to vent and let it out and hope that it will help ease this heaviness within.

When you are young you develop friendships that you honestly believe can survive anything - that the bonds are so strong they can NEVER be broken.  How wrong I was.  

I think I am a good and supportive person, although I am admittedly no angel and have made mistakes and hurt people on occasion.  Especially during the period after my mothers death, at this point in my life, although I have a loving and supportive husband and children who would do anything for me.  I lost sight of everything and dived head first into a dark deep pit, nothing made any sense and I felt so desperately alone without the love and support of my mum. We had a strong but tumultuous relationship - we spoke daily on the telephone and saw each other at the very least fortnightly.  The girls were incredibly close too and viewed my parents not as grandparents but as second parents.  I think that is when the rot set in, when my friendships with my lifelong friends started to deteriorate almost imperceptibly and the distance between us started with a small crack which expanded very gradually.

THEN, when the girls started to get sick one by one these friendships dropped off more obviously.  I don't know whether it was because I had to take the role of carer and was no longer able to go out, socialise and support others with their difficulties any more because my plate was now so full it was overflowing with challenges and problems which as one was sorted another grew and took it's place.  I must have become a bore, full of worry and anxiety.  Not a fun person full of light hearted chat and banter any more.  Good old reliable Tanya was no more - I had learnt to say "no" and very rarely said "yes" - often I fudge and say "we'll see" but inevitably it resulted in a cancellation of plans as the planned event, social gathering or whatever it was approached.

I am sad now, to look back at those friendships and see that they are now just people I knew and who I have very fond memories of happy times, life events and special moments together.  Over the past 5 years we have not made any of those memories together - because now we are just friends on facebook.  They don't support my causes or cries for help, they must find it all so very boring.  I often wonder, how would life be if the shoe was on the other foot - if their child/ren were chronically ill and suffering desperately every day - and they were having to research medical practitioners and possible treatments and fight hard to resist treatments being pushed onto them that are not appropriate.  To have to live a frugal life as working is no longer possible - caring is the top priority and become the very best advocate possible for the children.  If you wake up each morning exhausted before even getting out of bed, life with a deep sadness for something that is beyond your control.  How would that grab them then? Would they be wanting the support, patience and understanding from their friends, and would they then be interested in the charity appeals and wanting your friends to help get behind you and support them too on your behalf?

Am I that bad a person that our friendship is not worth fighting for, I feel invisible to you all - as if I have some hideous infectious disease and so you keep me at the end of a very long stick.  I feel so very sad, tired and rejected. Realisation of all that was, can no longer be.
I am grieving for the person I used to be - that happy person who had these great friendships which I thought would last forever.  I am sad that I am thought of as a boring selfish person now, who has only time for her children and husband, who has locked herself away from society and life outside of the home.  I make no apology for that - it is what I have had to do - when I married I made a commitment for life, when we had children together we made them our priority - whatever I do I do with them in mind, what is the best for them and for my husband too.  I made that commitment and if I have to sacrifice these friendships in order to do that then that is what I have to accept.  I honestly thought that we could survive this - but we can't.  Life changing events like these change you, make you a different person and alter your priorities and perception of life.

YET, in this strange new world I am now living, I have met some wonderful, supportive, understanding and funny NEW friends in the virtual world.  These people have given and continue to provide such support and love to me and my family that I have been really humbled and grateful to each and every one of them.  To have people who get what it is to live life in such a limited way, to understand the chronic illness and the emotional turmoil that comes with it.  THANK YOU so much for this - I cherish each of you enormously.

I also have two very special local friends who I met when Tara first started at her new primary school in Derby several years ago now.  These two friends understand the girls issues, my emotional needs and are incredible - they also arrange to see me as and when I can, accepting late cancellations as part of the friendship and making plans very close to home so that if necessary I can up and leave and be home within 5-10 minutes.  Liz and Rachael (and hubby Mike) - thank you so very very much - I cherish your friendships.

My focus in life is to promote and help the charities I believe can move biomedical research forward and a glimmer of hope and promise for a better future for sufferers of M.E.  I fight for understanding, awareness and the psychological and physical impact it has on sufferers and their families/carers. How it is a huge life altering event and you are taken on a journey often beyond your control - mostly just coping and dealing with life on a day to day basis.

Thank you to those who have stood by us and continue to support us.
x~X~x