28 February 2014

Mawer Family Adventure with M.E.

I have very kindly been asked to contribute and share with you our journey with M.E. and how we deal with the changes it has brought into our lives, our fundraising and bid to raise awareness to everyone we meet.

My name is Tanya, I am married to The Dave (as the girls call him) and have three fabulous daughters. Up until 2010 our life was no different really to most others, just ordinary married couple with 3 children, all in school and dealing with the everyday chores that you have when you have three sociable and active young girls. My eldest Keisha, wasn't sporty but enjoyed music and reading and loved hanging out with her friends. Tasha, the middle one, was very sporty, playing netball, tag rugby and participating in dance groups and even a flash mob dance in the local Westfield Centre doing a Bollywood routine. Tara, my baby, was uber active – you couldn't tie her down, none stop activity whether it be tap dancing, modern dance or musical theatre – she just loved to perform, singing & dancing wherever she went – and performing with her peers in the local Assembly Rooms several years in a row. 

That was then, a distant memory sadly – the girls were so happy and life was full of promise for them – then M.E. entered our lives in November 2010.

Now, it has to be said, prior to Tara falling foul of M.E. I was pretty darn ignorant of what it entailed – I vaguely remembered during my school years a girl my sister was friends with had M.E. I remember she was home schooled and when we visited often had to just get up and leave us to go to bed and we would quietly leave and go home. That is all I knew – M.E. just made you very tired – how wrong could I have been? 

Yes M.E. does make you exceptionally fatigued – but that is just the tip of the iceberg. We had to watch while Tara suffered crippling back pain, disturbed sleep with terrible vivid dreams and legs that wouldn't behave themselves, always moving and feeling as if they didn't belong to her and falling out of bed. Then there were the headaches, joint pains, nausea, loss of appetite, brain fog, weakness of limbs, Orthostatic Intolerance, Hypermobility issues, IBS – the list is endless. It was heart-breaking watching my child become a shadow of her former self, barely able to walk and always so pale with dark purple shadows under her eyes. She was only 10 years old and was just at the start of her final year at primary school – she didn't manage to go and finish her last year at that school and hasn't been well enough to get back into school since.

It didn't just stop there though – Tasha was then diagnosed with M.E. in February of 2012 after suffering from viral meningitis and simply not getting better. We went through CAT scans, x-rays, blood tests and finally were given the diagnosis of M.E. along with hypermobility, orthostatic intolerance, chronic pain and now a re-occurrence of her asthma too. Which hit Tasha so very hard, she had just selected her options for her GCSE’s and was so excited because she was told she could take all of her chosen subjects of drama, beauty and triple sciences. Unfortunately she wasn't able to start any of them and has not been in school since her diagnosis. Tasha’s M.E. is different to Tara’s – there are multitudes of symptoms and every sufferer is different in which ones affect them and the severity it takes too. Tasha is often unable to walk, relies frequently on wheelchair and crutches and suffers constant pain in her joints.

Both Tasha and Tara suffer from anxiety and panic attacks in addition to the M.E. – Tasha more so and these can be crippling for her, she also sadly suffers from depression too . Keisha, our eldest daughter also suffers from social, anxiety and depressive disorder with autistic traits and has panic attacks and becomes upset and worried about her sisters and their health and for this all three girls (and myself and Dave for parental support) visit our local CAMHS team (Children’s and Adolescent Mental Health Service) for support. Keisha and Tasha have to take Fluoxetine to help with depression and anxiety and Tara is waiting for a therapist to become available to have CBT (Cognitive Behaviour Therapy) to help her address her anxiety. We have a very sympathetic psychiatrist there who fully understands M.E. and can differentiate between its physical aspects and the psychological legacy it has given them. They liaise with our medical team to try and provide a holistic approach to care, but sadly very few doctors have any knowledge of the illness and are unable to offer us much more than necessary letters to school and trials of medications to see if they ease symptoms. It is with the help of our fantastic GP’s that our applications for blue badges for both girls were awarded by supplying us with supporting letters to send with the applications – I can’t tell you how much these have helped.

However gloomy this all sounds there has been a silver lining to all this. Despite the illness and the huge limitations it has caused I feel without it I believe the girls wouldn't have discovered their previously undiscovered creative and artistic talents. Tara has become passionate about making short films/videos along with photography - a few years ago she made a stop gap animation film on YouTube to raise awareness for ME.
It is something that when well enough she would like to pursue further at College. This has given her something to focus on and work at when she is in her room and too ill do go out – we are currently having a large green screen blind made to go right down to the floor for her in her bedroom which will allow her to play with more special effects both on video and her photographs. She is also going to try some taster singing lessons to see if she can tolerate them and if she can then we will enrol her for a weekly lesson very locally to develop her very pure singing voice. 

Tasha has found that she loves photography and wants to make it her career in the future, she also loves to draw and has a tattoo kit and has learnt how to put it all together (by watching YouTube tutorials) and when well enough loves designing tattoos and learning the art on artificial skin sheets. When she is well enough she hopes to be able to open a Facebook Page and sell postcards, calendars, note-lets etc. made from her photographs to raise funds for Invest in M.E. which is our chosen charity to support, as we wholeheartedly believe they are the key to unlock a better understanding of the illness and possible treatments via their research in the future. 

Recently I had to visit the doctors as I had been feeling very tired and unwell along with joint pains, it turns out (not surprisingly) that I have high blood pressure and IBS and as all my myriad of blood tests came back clear they feel I am either suffering physical manifestations of stress or possibly early signs of developing M.E. and so am being monitored monthly at the surgery by them. So as a way of combating stress and trying to make sense of what jumbles about in my mind I started a blog – I must admit most of what I type doesn't get published, it’s the process of writing it down that helps – whether I delete it or not afterwards. 

Tasha has also started blogging too and is finding it a great way to vent about her M.E. and anxiety amongst other things and reading her blogs have made me extremely proud of her and her bravery to share with others.

Since Tara’s illness we have gone from a family of no pets to a family with 3 crazy loving dogs – two Boarder Terriers, a dog called Taylor and a bitch called Skyla Minx and a Jug (Jack Russell & Pug cross) dog called Loki (who lives up to his name). They have been brilliant in providing pet therapy – sometimes when life seems overwhelming sitting with the dogs and accepting their unconditional love and devotion can be a balm to the soul. Whenever a member of the family is feeling particularly ill the dogs sense it and go to that person and literally “guard them” until they improve.

As a family, we find it helpful to talk about M.E., how it affects us and encourage all our friends and family to get behind us to spread awareness and support our sponsorship fundraisers. There are two fundraising ventures we are now undertaking on an annual basis;

Walk for M.E. as a family team every May during M.E. Awareness week – we don’t know yet how far we are going to be able to walk this year, it all depends on how well Tasha and Tara are at the time. We have also managed to get 5 Invest in ME t-shirts for us all to wear in the run up to and during our walk, we hope people will approach us to ask us more about the illness and charity - we also purchased 5 pin badges to wear at all times for the same purpose.

Wherever possible we like to support other fundraisers and be vocal in spreading the word about what M.E. does and how people can help us raise funds and awareness. Mama Chill (aka Stacy Hart) is one such person who I have utmost respect for – not only does this talented woman sing/rap she also designs clothing via Dizzyjam, some of these sales help to raise funds for Invest in M.E. – so if you can get behind her too that would be fabulous.

We couldn't have made it through the past few years though without the support and friendship of the wonderful people we have me through Facebook and the Let’s Do It for ME group, along with so many other very special people whose friendships we now treasure via other the ME groups too.

We know the M.E. journey is a difficult and unpredictable one but take comfort from fundraising and spreading the word that we are doing something positive for the cause and have a real hope that there will be help, treatments, understanding and better support for sufferers in the future because of the great team effort by all involved.

Thank you for all your support and friendship and we hope that for all a better future lies ahead.

With love from the Mawer Family