|Me with Tasha on the left and Tara on the right last summer at our holiday home on the Yorkshire coast.|
So why am I writing this blog? You may or may not be aware that May 12th is Awareness Day for the “invisible illnesses” M.E., Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. To mark this day and help to raise awareness I am participating again in the #May12BlogBomb. You can read my contribution to last years blog bomb here
When Tara became ill she wanted to find a way to express to her peers what M.E. was like for her to try and gain some understanding for why she was not able to do the same things they could do. When she was 12 years old she made this video (2 years after her diagnosis).
As parents we all worry about our children and their futures, for us one of our major worries is how the girls will be able to provide for themselves as they become adults. Both girls have had their education halted by their illness. Tasha has been unable to take any exams at all due to the cognitive issues she has, reading and writing are exhausting for her and so she can only text or read messages in fits and starts. Tara is a little stronger now, having had the illness longer she seems to have reached a plateau where she can manage her energy and pace more easily. She is attending virtual school and taking Maths and English GCSE’s. We are doing all we can as parents to provide them with the skills to potentially work for themselves based at home to secure an income whilst managing their energy levels and pacing. Sadly, this will be a difficult path for them but with ongoing research taking place via charities such as Invest in ME we hope that some treatments will be found which the girls will be able to take and improve their quality of life.
As parents it is heartbreaking to see your child miss out on so much of their youth, to miss school, parties, social events, prom, leavers days etc. It is a right of passage that has passed them by because of their illness.
This is a picture of my girls, to look at them with make~up on you wouldn’t know they were ill, but a photograph can so easily hide the truth. Without make-up on you can see clearly their illness but to honour their wishes I won’t be posting one of them like that because they don’t like people to see them looking unwell.
|Tasha (age 16) Tara (age 15)|
What saddens me right now though is that too many health care professionals still follow the “it’s a psychiatric illness” school of thought and push Cognitive Behaviour Therapy and Gradual Exercise Therapy. This can be terribly dangerous for patients with M.E. as it can push their illness to a more severe level as the body simply cannot cope with exercise and you cannot “cure” yourself from M.E. via psychiatric therapies. It is a physiological illness with very real symptoms affecting all of the body, brain and nervous system. However ~ I will accept that having M.E. can lead to acquiring a psychiatric illness such as depression and/or anxiety, simply because of the isolation, disbelief and lack of acceptance/treatments available In this instance I feel talking therapies, gentle cognitive therapy and sometimes medication are necessary to help the patients cope with the changes they have had to address when the illness came into their lives.
Tara has undergone CBT (all be it a gentle form) to help her address her anxiety as she has never been through secondary school due to becoming sick at the beginning of her last year in primary school. This has helped her to understand why she becomes anxious and provided her with coping mechanisms for the occasions when her anxiety starts to build. Tasha has struggled more mentally due to the impact of her illness, possibly because she was at the beginning of Year 9 in secondary school when she became sick and so had had a taste of a normal teen life prior to M.E. She also now suffers from severe anxiety and depression along with Trichotillomania and Dermatillomania this has meant we have had to shave her head due to bald patches forming and keep her fingers nails exceptionally short. This has all come on since ME and for which she will need long term support and therapy to overcome.
My hopes for all suffering from these illnesses are the same as for my girls. I hope for a future where their illness if not totally cured can be effectively controlled. I hope for understanding and recognition from all areas of the health service and a comprehensive protocol written up regarding swift and accurate referral, diagnosis and treatments for patients. For appropriate agencies to be brought in from other departments to address gastric, cognitive, dietary and mobility issues which may be present. For OT departments to be able to provide wheelchairs and household aids to help the sufferer within their home (such as bath/shower aids, stair access issues, bed cradles etc). I would also hope that those unable to work to support themselves have access to benefits, home carers and blue badges to assist them as much as possible in their day to day life.
I am an optimist, I always look for the silver lining to any situation and will never give up hope for the girls and a better healthier future. Together patients, carers, friends and supporters can raise awareness and funds by either fundraising independently and donating directly to your chosen M.E. charity OR by joining the Let’s do it for ME teams efforts which is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based around the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.towards the more research to find treatments for these illness and acceptance of the public that it is a real, physical, debilitating illness which needs support and understanding but more importantly to be believed.
If you haven’t seen this video already you may find it helpful in explaining how the illness can alter a sufferers life. My daughters made this for the 2014 M.E. Awareness week to try and explain what M.E. is and how it affects them…..
If you wish to make a donations towards Invest in ME Research projects and would like to support our family fundraising efforts I have provide the link below for our family fundraising page. We will be doing two Walks for ME in May, one as a family pushing the girls in wheelchairs,
|This is us as a family with our 3 dogs doing the Walk For ME 2014|
OR you can donate via text message following the directions below:~