Sunday, 31 August 2014

Jehovah's Witnesses Watch Tower Pamphlet from 1939; Catholic~Fascist Menace in Britain

Among some second world war publications and ration books (see previous blog) we found this very worn and yellowed pamphlet ~ the paper feels so thin and delicate as if it may just disintegrate the next time it's touched.

Now I have to admit I am ignorant when it comes to the history of the Jehovah Witness religion and their conflict with the Catholics, I did however find this website which lays out the history behind it's publication.

It discusses the alliance of the Catholic Church with Fascism at a time just before the war broke out.

I am neither a Jehovah Witness or Catholic, I don't believe in one religion or another and just follow my own spiritual path. I dislike the perpetual conflict that goes on between one faith and another and the wars the violence it excites. However, this is a piece of history which I had previously been unaware of and found it fascinating.

A small piece of history

My husband has a van, is a man and therefore is called upon at times to help people move things around or get rid of clutter. One family asked him to take away a number of old items which they no longer wished to hold onto, including these pamphlets and ration books.

I suspect most of you have been taught about the second world war at school, I know I was. I was also fortunate to have another source of information about it, my father, who flew both the Hurricane and Spitfire for the Battle of Britain Memorial Flight Team for a number of years. He also came to my daughters primary school years ago and gave talks to their class about the Second World War, he used to hand round his old gas mask for them to touch and put on, take booklets with information about the Battle of Britain and also his memento of how lucky he is to be alive ~ a piston which flew out of a Spitfire whilst he was flying it as part of a fly by for my brothers school forcing a crash landing as we watched in horror as the plane disappeared from view in a plume of black smoke. Thankfully he managed to land it in one piece and was unharmed ~ he was later commemorated for safely landing and preserving the plane.

So although I have heard the history through my father and grandparents plus watched documentaries I never really felt how it must have been for the people who lived it, only imagined. However when I held these fragile, yellowed pieces of paper in my hands it really brought home to me how frightened the original recipients must have been to receive them.  For me as a parent I would have felt both terrified and uncertain how to best protect my family along with the fear of the unknown future ahead. I had not previously seen any of the War Emergency and information pamphlets and figured that many of us haven't, so I scanned them to share with you now...

Some things you should know if war should come.

Make your home safe now.

War Emergency ~ Information and Instructions.

No matter how much I grumble about modern day living I do appreciate very much what our forebearers have done to ensure we have the life and freedom we do. Life may not be perfect but just think of what may have been and the huge losses and sacrifices that have been made on our behalf.

Thursday, 28 August 2014

We're cracked but not broken

Those who know me well understand I suffer from bouts of depression and am an all or nothing person which makes me not a particularly easy person to live with on top of that I am also a "fixer" and slight control freak.  However, I do my absolute best to do what I can to support and help my girls to achieve better health and stability.

To this end I go to one to one therapy via adult mental health services and also go via CAMHS for specific family therapy and support. Also both myself and Dave have been assessed by our mental health team as they need to understand our flaws and issues to be better able to help the girls as it gives them the bigger picture and helps them see why we do what we do as parents and help us improve our interactions/decision making processes. It has been noted that we are a unique family as each individual member has specific issues to deal with and these have a knock on effect on everyone else within the family unit ~ we have been told we are complicated and unlucky with what we have had to address over the years. This makes us cracked, definitely, but absolutely not broken.

The girls have had chronic illness & issues since childhood, Tara her bowels, Tasha her chest and Keisha her social problems then in later years ME, anxiety and depression, which means we have been to so many meetings, seen so many medical professionals and had so many plans of treatment/action over the years that it is easy to become disillusioned with the system.

However, this time around, after yesterdays team review meeting for all three girls it has to be said we are feeling more positive than ever before. 

We have been incredibly fortunate after our previous years of searching for the right people to work and establish a bond of trust and understanding with, to have been linked with our allocated CAMHS team of family workers, therapists and psychiatrist.  Together with their help we have since been referred to an Occupational Therapist who is specialised in helping with our daughters issues, along with a Paediatric Consultant within the NHS (so no more huge private doctor bills) who is open to working with the rest of the team to provide a cohesive holistic care plan for them. Our dietician referral has gone through and our appointment is for the end of the month, which means we will meet and have another team member on board then too. In addition to our hospital team we also have our wonderful osteopath who is now also considered a friend, we trust her and value her advice and support and quite frankly wouldn't be without her. Tasha also has her fortnightly visits with her peer mentor who is also invaluable and Tara has just started with her Nisai virtual education, the staff at this online school are geared up to working with children with ME ~ which is a huge relief and means we don't have to push to gain their understanding as it is already there for us.

M.E. and mental health issues are a truly difficult illnesses to negotiate. It varies from sufferer to sufferer and the symptoms wax and wane and change continually. Some days can be truly horrific whilst others they can appear to the outside world to be perfectly "fit and well" ~ being "invisible" illnesses makes it, at times, very difficult to explain.

So, back to what I was saying ~ we had a review meeting yesterday with the team.  Our OT is going to meet with myself and the girls mid next week to discuss setting up their heart rate monitoring pacing schedule. It is a very slow, gentle, progressive regime to prevent the body being put under any stress and has had good successes with other teens. Our CAMHS team are organising regular contact between professionals at all times and to that end they have each others email addresses, so will update the rest of the team after each encounter with the girls ~ this way everyone working with them is always 100% up to date with their progress/issues/problems which means we are always moving forward. All the way through this we will be supported as a family via our family worker. and the girls via their one to one sessions. They will be helping us to address any emotional issues we may encounter along this journey together, chronic illness and mental health issues cause so many fractures and misunderstandings that mean it is incredibly important to work at maintaining clarity when emotions threaten to take over.

We have hopes and dreams for the girls and their future ~ we are focusing on Tara completing her 2 years of Nisai and then moving onto College to do her 4 one year modules to gain her media qualification.  Tasha is hoping to be fit enough to enrol in College to do a part-time art foundation course in September 2015 then after that follow some kind of tuition to explore her photography. Keisha is applying for jobs whilst also writing and creating some unique and beautiful jewellery in her small workroom downstairs. She has managed to complete her 4 weeks of NCS and then went to the Leeds Festival, huge achievements and I am so proud of her at working towards beating her demons. 

We have also been astounded by certain individuals, who despite having issues to address themselves have given unconditional support and friendship to us. I know those people know who they are and I just want to let them know how cherished they are.

So cracked, yes most definitely, but broken ~ never.


Friday, 22 August 2014

Safari Day Out

We had a fabulous day out with the youngest two daughters on Wednesday, sadly our eldest was preparing to leave for Leeds Festival with her boyfriend & so stayed behind with the Hairy Trio. We booked both theme park and Safari but when it came down to it both girls were not well enough to go on any rides and so we went round the Safari twice instead. 

My personal highlight of the day was watching the Hippos, I could have stayed on the viewing platform watching them all day but I don't think the others would have been pleased with me if I had. The girls enjoyed being with the goats because they were so friendly and soft to stroke.  The camels smelt rank and were a bit too keen to get their heads in our car and Dave struggled with one in particular as it tried to get behind the wheel! The giraffes were lovely and gentle, the lions magnificent and all in all we had a fabulous day out. 

To top it all off at the very end of the day as we were leaving the park we saw a wonderful steam train go by with people in the carriages waving to us as it sped past.

Sadly they no longer have monkeys and so a visit is being planned to take the girls to Twycross Zoo before the end of September this year.


Tuesday, 19 August 2014

Goodbye Summer, Hello Autumn

Good morning all, is it just me or does it feel as if Summer has waved goodbye and Autumn has stepped forward to take its place? I've had to resort to wearing jumpers and boots over the past few days and am seriously considering bringing the duvet out of it's slumber and slinging it back on the bed ~ time to pack away summer bed and bring out the winter coverings.

One discovery I have made though is the joy of a soft jersey skirt for the more comely (as we call it in our home) figure ~ I had never dreamt that this item of clothing could afford such comfort, it's quite the revelation, so obviously I bought myself two (one in dark grey, the other in black), I also found a wonderfully comfortable ankle length flared denim skirt too ~ so that brings my new skirt collection up to 3 ~ Tara, my love, what on earth have you started?  So, although my fondness for wearing jeans, trainers and hoodies is still very much my usual daily attire due to it's practicality when living with 3 dogs, I have decided to occasionally enjoy the freedom of skirt wearing too.  
I must say, it feels really rather odd to wear and I feel strangely self conscious when out and keep expecting someone to stop me and ask me what I think I am doing going out dressed in a skirt which I know is bizarre. I have also added two more kaftans to my collection, two very soft jersey ones which I love to wear around the house, my husband keeps sniggering at me and asking me when I will be buying the head-wrap to go with them as he feels I am emulating Margo from The Good Life (cheeky).
Hubby thinks I am emulating Margot
The growing Kaftan Collection
The skirt collection (although obviously this isn't me modelling them!)
Yesterday I had my first ever "live" classroom experience via Nisai Virtial Academy for the parental tour and to then fill in the online registration form for Tara. The lady who gave me the tour was lovely, friendly with a great sense of humour, you could hear the smile in her voice which bodes well for Taras new academic journey.  The virtual classroom is easy to navigate and has two interactive boxes, one where the pupil can privately talk to the teacher to ask any questions without their peers knowing and the other box where the pupil can chat with their peers and teacher alike throughout the lesson.  The microphone is controlled by the tutor who will pass it over to the pupils if they wish to answer a question and speak to the class (they click on an icon to put their hands up) but if they are shy they can opt to type in the box instead of speaking.  All lessons are recorded and stored for a year for that students to watch over as much as they like and use for revision purposes too. There is also another part of the site where students can hang out and chat together and join clubs. It is entirely safe as the email addresses given to the students to use can only be used within the Nisai Academy and student areas.  I did have some trouble submitting my registration for Tara though because we are paying privately we have to source our own exam centre, and as Tara has ME we are needing a home invigilator so that she can take her exams at home.  As yet I have no clue how to organise this and the lovely folk at Nisai have assured me that they teach many children with ME who choose this option and they will help me sort this out BUT the registration wouldn't go through which had me pulling my hair out because of this. However, problem soon solved after I contacted my on-line tour guide who managed to put it through from her end and we will complete that one section at a later date *phew* ~ so Taras headset will be on its way today, we are having our connectivity test on Friday of this week (as we are having new broadband installed on Thursday) and then she will have her induction on Monday 1st September, classes start on Wednesday 3rd September.  This is enormously exciting as Tara will be "in school" for the first time in almost 5 years and taking two GCSE courses.

On Wednesday, as a final holiday treat, we are taking Tasha, Tashas boyfriend Sam and Tara to West Midlands Safari Park as a belated birthday present for them both. Unfortunately earlier this year both girls were unable to fully enjoy their birthdays due to being too unwell and we promised as soon as we could to take them out for the day. Keisha and her boyfriend Jack will stay at home and dog sit for us as they will be packing and preparing for their trip to Leeds Festival on Thursday morning.  I am very impressed with the Safari Park as I rang up to book tickets and was told to do it all on-line instead to get the 10% discount on all tickets, Tashas boyfriend will get a discounted student ticket (so must remember to take his student card) then we only have to book two more tickets for the girls under the disabled box which then means myself and Dave would get in free as their carers. It's very rare being disabled has perks but this is one of the few and so we booked tickets for both theme park and safari. My job for today is to buy goodies for a picnic for us to take along with some goodies for Keisha and Jack to have at home. Then my list of what I have to remember to take with us; blue badges, two wheelchairs, student card, picnic & blankets and most importantly of all ~ camera to take snaps to remember the day. I know the girls are particularly looking forward to seeing the monkeys and so with that in mind we have just taken our roof box off as apparently the monkeys have learnt how to open them and we wouldn't want something like this to happen to us (or any stowaways coming back with us!).
So, here's hoping for some good weather tomorrow and that the rain holds off until later in the afternoon. Have a great week all.

Tuesday, 12 August 2014

Our life with M.E.

M.E. is a debilitating isolating and cruel illness and it affects children as well as adults. 
Tasha in her wheelchair enjoying the park and watching the ducks
Perhaps unless you have contact with a sufferer you may not be sure exactly what M.E. is as there are a number of incorrect assumptions about this illness, such as the sufferer is just a lazy work shy so and so. Just to clarify I shall give the definition that the respected Charity Invest In M.E. give...

ME stands for Myalgic Encephalomyelitis.
ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder. ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK. Of that number, approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs.  The Chief Medical Officer’s Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises that “CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease

To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.

In the UK it is generally believed that at least 250,000 suffer from the disorder.

ME/ ICD-CFS is a multi-system disorder, one form of which can be associated with enteroviruses related to the poliomyelitis virus. Virally-induced ME used to be known as "atypical poliomyelitis". There are acknowledged similarities and overlaps between ME and the post-polio syndrome (PPS), particularly concerning the nature and source of the pathophysiology, including virological evidence that enteroviruses persist in the human central nervous system. Specifically, the mechanism of the incapacitating exhaustion is identical in the two conditions (ie. in ME and PPS). In ME there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may include the myocardium.

Our family, unfortunately, are more than familiar with this illness as two out of three of my daughters suffer from it. We have so many questions as to why this may be but as yet have no answers. My eldest daughter has the most robust immune system of the three and apart from the odd bout of pustular tonsillitis has been fortunate with her health. It has been another story with my youngest two daughters who were both in and out of hospital from birth. 

Tasha had many issues with her chest suffering from numerous chest infections requiring hospital treatment then pneumonia when she was 5 followed by being diagnosed as suffering from asthma. She still takes a double steroid inhaler twice daily along with ventolin as she needs it but on top of those infections she also picked up every illness going round, always becoming very ill with them too. It was contracting viral meningitis followed by Scarlet Fever that resulted in her becoming sick with M.E. She then had to leave school at the beginning of year 10 and so has missed out on taking her GCSE's, we are hoping at some point in the future that she will be able to attend College to pursue Foundation Art and Photography so she can fulfil her ambitions of being an artist and photographer.

Tara had a year prior to her diagnosis having throat infection after throat infection, she would literally go only 3~4 weeks before becoming sick again, the doctor suspected Glandular Fever but when the test came back as negative we were referred to the hospital and given the M.E. diagnosis.  Tara also was in and out of hospital from the age of 5 weeks as she was classed failure to thrive and wouldn't feed, she became severely ill and by the age of 3 months we had her christened and we all thought at the time we were saying goodbye to her. Thankfully she rallied round but has always struggled to eat and has been left with digestive issues due to slow peristalsis of the gut and IBS. She has not been in school since the beginning of Year 6, we have done what we can at home but have just recently signed her up for virtual school via Nisai Academy to take Maths and English GCSE's.

The most difficult thing to convey to people who try to get their head around the girls being sick is that they "don't look sick" because when they put on their make-up and dress themselves up they can hide how sick they look. If you saw this photograph I can understand why you would think there was nothing wrong with the girls.
They have incredible strength of character and a wicked sense of humour, but once you take the make-up off and they stop putting on a front pretending they feel well then you can see the reality of the situation. Obviously, being teenage girls they don't like people to see them that way and so prefer to have photographs taken only when they have on their make-up "mask" on.

The girls made a video for M.E. Awareness month in May to help explain to others what this illness is and how it affects them. (it is listed on both my own YouTube account and the Let's Do It For ME! YouTube account - the link to the Let's Do It For ME! awareness videos is here)
It's a sad fact of life that we own two wheelchairs, a pair of crutches and two blue badges in order to go out as a family. Occasionally on good days the wheelchairs can be left behind but only if we plan our day out to ensure there is minimal walking and there are plenty of places nearby to stop and rest.
The five of us walking along the canal side for our May Walk for ME 2014
Both girls are currently very unwell right now, the illness is wreaking havoc with their lives. However, we have a new Consultant to see very soon and are hopeful that steps can be made to improve the girls quality of life. Keisha wrote a very moving blog earlier this year about what it is like for her having two siblings with this illness.

I support the Charity Invest in ME Research as I believe they are the key to unlocking this illness and finding ways to help and treat sufferers, so to this end I have joined the group Let's Do It for ME who are a group of ME sufferers and their family, friends and carers who raise money to fund the Invest in ME research projects. I may occasionally write a blog about various fund raising activities we may do ~ earlier this year Keisha cut off her dreadlocks for her sisters and raised just over £1000 for the research fund, we always do a sponsored Walk for ME in May of each year and my husband, The Dave, grows a ridiculous beard and moustache every Movember to raise funds for this charity too. It helps to feel we are doing something to potentially help ourselves and also the other sufferers.

I know there are many other devastating illnesses and conditions people suffer from but this illness affects every decision we make and how we live our life as a family. It is horribly cruel and has robbed the girls of so much already, they make the best of what they have and we have learnt to appreciate every small moment of joy we get.

There is hope on the horizon, I truly believe that there will be treatments and solutions found to help patients in the future.  Until then we hold onto that thought during the times when the girls are unable to move from their bed, in pain, isolated from their peers. We hope that they will be able to achieve their ambitions, they are so artistic and creative I am sure they will find a way.


Sunday, 10 August 2014

It's all relative

I found this lovely analogy on the web...

"We are all humans that are all really after the same thing. However, we all have different points of view, and because of this are divided as to what the "meaning of life"'s like if you took a million painters and put them in a circle around a large mountain. While it's true all the painters would be painting the same mountain not all of their paintings would look the same."

Whilst I am horrified and have huge empathy by those affected by the monstrosities being carried out around the world, the violence, suffering, loss of life and devastating illnesses I also feel equal devastation by the suffering of my daughters too. Please don't judge me too harshly for this, I know the girls have a roof over their heads, have health care available (although limited applications to their illness) and we are not in a war zone, however I feel that suffering, no matter where it is, is relative to your situation.

This past week the girls have been particularly unwell, their ME symptoms are at their worst ever since they were diagnosed and both are needing the assistance of wheelchairs to cover any distance. So we decided to go to our caravan on the Yorkshire coast. First stumbling block was first born daughter who decided she would rather stay behind and house sit to trial living alone for the week, she is hoping to move out early next year providing she can secure a job. I don't know if it is just me but a small piece of me began to mourn the loss of my first born child as she takes these first steps towards flying the nest and establishing herself as a young adult in the world. I am also enormously proud of her but it seems too soon for me to be letting her go, time has quite literally flown and it hardly seems possible that she is an adult now. So we agreed she could stay behind and I whizzed around the supermarket to refill the fridge which we had allowed to empty and left some cash for further supplies for later in the week. We then packed the car for our week away, wheelchairs = check, blue badges = check, dog paraphernalia = check, slankets and other such necessary items = check, and we were off.

I simply love our place on the coast, I may have mentioned that a few times previously, the change of scenery, the smell of the clean fresh air and the view of the sea ~ which makes my heart lurch with excitement as I catch a glimpse of the it as we draw closer to our destination. The girls travelled in their pj's with seats reclined with pillows and slankets to make it less exhausting for them and the dogs had their own special bed in the centre of the car to snuggle down in for the journey. Once there the girls collapsed on the sofas whilst Dave and I unpacked and the dogs had a run around the decking before we walked them ~ which resulted in us both becoming soaked to the skin as we were caught out in a dramatic flash storm with thunder and lightning and torrential rain. It was quite energising, once back under the cover of the caravan we started to steam in the heat, once we had dried ourselves and the dogs off the storm just stopped and the sun came out (typical).

We had taken games, xbox, videos, art supplies and loom bands with us to occupy the girls. In order to achieve our goal of taking the girls to the beach we had to ensure they rested for a couple of days and watched the weather forecast to select the perfect day ~ which arrived midweek. We were only out for a couple of hours but in that time we manage to get the girls onto the beach and have a paddle in the sea, along with the dogs who are slowly overcoming their fear of the water ~ this time round they actually went into the shallow waves and paddled a little with me instead of running away from them.  It was a wonderful couple of hours but the girls found it extremely tiring and so as soon as they had rested on the beach and allowed their feet to dry we bundled them into the car and drove up to the Starbucks on site and bought them a cold drink before heading back to the caravan. That, sadly was all the girls could manage this holiday, the excursion to the beach knocked the energy right out of them and they had to rest for the remaining few days of the holiday.
Tara & Tasha walking into the waves

Me with my 2nd & 3rd born girls

The Hairy Trio become braver by the water

They even walked along the shallow waters with the waves lapping their toes
My beautiful Keisha didn't come with us this time but photo taken on the same beach during our last visit.
To be honest, this blog post isn't really going anywhere is it? I'm really not entirely sure what I am hoping to share with you either but it felt important to recognise the fragility of life and to say grab those precious moments when you can no matter how short they are and put them in your memory bank so that you can pull them out during the dark days and remember that the darkness doesn't last forever, chinks of light will probe and distort the darkness ~ with luck and hope those episodes of light will become longer and brighter until eventually the darkness is banished to the shadows and no longer has the grip on your life it had before. This is called hope, so I leave you with this...