September brings with it the start of a new academic year ~ for some it will bring them the nerve wracking introductory first few days at a new school, college, university or apprenticeship. Having to go to induction classes and “ice~breaking” activities. Something from my past which I remember with a shudder and cringe as I recall having to sit in a circle, each of us standing up in turn to give our names plus some other titbits of information about ourselves. For me, being very shy and awkward, just this by itself was horrifying. However it got worse ~ a ball was introduced and we then had to try and recall each others names to call them at the same time as throwing the ball their way. Inevitably I got the name wrong as my memory is shocking at the best of times which then made me feel even more self conscious than ever. Many lucky students will be avoiding participating in all the “getting to know you” shenanigans and instead will be simply returning to familiar establishments and continuing their studies for the forthcoming year.
This year 2 of my 3 daughters are experiencing these discomforts; Keisha my eldest completed her foundation course last year with flying colours and now starts her 3 year joint honours course in (and forgive me Keisha if I have the name slightly wrong) International Relations and 3rd World Development. The course in itself is a mouthful but I know the content is something Keisha is passionate about and so hopefully that will help her plough through the course work required of her and she will meet other like minded people along the way. Tasha, my middle daughter, is avoiding all the “hello my name is…” stuff as she has just started her apprenticeship in business with none other than The Dave ~ he is training her up in all things American Classic Car and hopefully in future years she will be able to take on the business when he wants to retire. Finally, Tara, my youngest, started her “meet and greet” week at Derby Roundhouse College as she is studying Hair and Media Make-up ~ a course which requires a large number of equipment so we have invested in a trolley case for her to keep it all in to ferry back and forth to campus every day.
For the girls these new beginnings come with challenges, between them they are battling demons called Atypical Autism, Dyspraxia, Borderline Personality Disorder, Myalgic Encephalomyelitis, Anxiety and Depression ~ quite a list to be contending with I think you will agree.
As a parent I found the most frustrating part of all these illnesses/disorders are the lack of information and support for families living with them. So for this blog I have included videos from YouTube which I personally found interesting and decided to share just in case anyone else is living with them and in the dark, frantically searching for more and more information too and hadn’t come across them.
So first I find Atypical Autism creates challenges for my daughter with her education, socialising and environment but which she, with support is negotiating and still achieving her goals. For people unaware of the different types of adult autism and how it challenges those living with the condition this film is very interesting. The trailer for the film was published on YouTube on 13 Mar 2014, the description is…
“Too Sane for This World explores the challenges and perspectives of 12 adults on the autism spectrum. A unique collaboration between neurotypical and atypical individuals, men and women living on the spectrum speak candidly about their autism, difficulties they’ve faced, and the experiences that have shaped their lives, illustrating the neurodiversity of the mind and it’s limitless potential.”
You can find out more about the movie and how to download or stream it to view it in it’s entirety here.
As I said previously, another of my daughters has Borderline Personality Disorder, something I had never heard of until her diagnosis as she had previously been misdiagnosed as having Bi~Polar instead. If you or anyone you know has this disorder then you will be aware of all the struggles the sufferer has to face. For my daughter she not only has this but also ME to contend with too. This means that all her achievements are due to such determination and inner strength to not allow this to define her despite all the difficulties they throw at her. I found this short film incredibly useful to help me understand this condition further…
I think almost everyone has experience episodes of anxiety in their life and that I know is perfectly normal. BUT having serious long term anxiety can be very debilitating and makes life difficult for the sufferer. All 3 of my daughters experience anxiety on various levels and Tara underwent CBT which helped her hugely, if you suffer from anxiety you may find this video interesting/useful…
As 3 out of 5 of us in our family have ME, I have found myself having to try and explain the illness to so many people. Inevitably I fail in my mission when on the spot as my brain literally closes down and goes blank on me ~ which is hugely frustrating. So, imagine my delight when I found this great slide show on YouTube which explains all about ME and how it affects the body of the sufferer …
This being up on YouTube means I can say to people, “you know what, I find explaining this condition quite difficult as it is complex ~ can I send you a link to a short 2 minute slide show which can say it far quicker and more succinctly than I can”
For me personally I am finding that my biggest battle is with the unseen enemy Myalgic Encephalomyelitis which is trampling on my physical and cognitive abilities with enormous hobnailed boots. I am struggling to face the enormous challenge and energy drain of simply showering which means I am relying on wet wipes, dry shampoo (or hats) and sitting down to clean my teeth with an electric toothbrush ~ who knew how much energy simply being clean took? I struggle to find words, lose my train of thought ~ especially half way through a sentence. Forget what I am doing, where I was going and why I am standing in the middle of a room ~ presumably I wanted to do/get something? I wake up as tired as when I went to bed, getting up is a huge hurdle each and every day. My mobility is becoming more of a struggle with the pain and exhaustion from all parts of my body, so many I can’t pin point any one particular area. I feel humiliated in accepting help, it makes me feel so damn useless and embarrassed having to ask my daughter and her boyfriend if they could iron and clean my house for me because I simply can’t do it myself. I also have help to shop and prepare my food to zip seal and freeze or refrigerate to make preparing meals less stressful and tiring for me. Saying that, my family are fantastic and we all rally round each other, we try to all pitch in and help wherever possible and not to recriminate anyone who is having a bad day/s or week/s and simply cannot help.
Believe it or not though, September has some positive news too ~ my diverticulitis symptoms *touches wood* seem to be relieved hugely by following a vegan diet, which means less bowel movement disruption and toilet visits and also less sigmoid colon pain from my pouches. This is a great improvement and one which I am quietly celebrating, although I don’t want to tempt fate and so won’t, just yet, big it up anymore. I am finding the vegan diet nowhere near as limiting as I had first thought and am managing to have a varied and interesting diet which leaves me feeling satisfied and content. This YouTube video really clearly explains Diverticular Disease and Diverticulitis…
I don’t know if anyone will have found this blog useful at all, but my thinking is it doesn’t do any harm to put it out there, just in case. I blog for so many reasons, to vent, to raise awareness, to share something I find interesting or just to sort of diary entry what’s happening in my life.
Oooh ~ doorbell ~ back in a mo…..
Wow! Just had my Ocado delivery ~ a first, quite by chance I recieved a £20 off voucher on my first order and discovered they sell a larger amount of vegan foods than my local Tesco or Sainsburys. I now have *insert drum roll* VEGAN MAYONNAISE!! So happy, as I have missed my mayonnaise with my chips. Plus I have ordered almost the full Fry’s Vegan range to try out too. BUT THE MOST IMPORTANT PART I have now in my sticky mitts 6 LARGE bars of Bournville chocolate as my local shops have stopped stocking it and I was having enormous chocolate withdrawal. PLUS both Koko and Oatly chocolate milks to dip my biscuits in. #happyday I still stand by my earlier stance though of a BIG NO to both kale and sweet potatoes, just nope ~ don’t want them on my plate thank you.
So til next time, see you later and have a great September whatever you are doing, wherever you are and hoping, if like me, you are struggling right now, that you find some respite from your symptoms soon. I leave you with a few pictures of my lovely Hairy Trio who brighten my days, make me laugh and give the best warm and dry furry cuddles …
Just a quiet note in case anyone is interested ~ Just a heads up really, if you support a charity by fundraising online using JustGiving then you may be interested in their Charity of the Year Award. You can vote once for any JustGiving charity, up until Wednesday 28th September 2016. Click here and type in your chosen charity or Invest in ME (if you wish to support research into the illness ME/CFS), then click on their logo to complete the online voting form. REMEMBER though that 28th September is the deadline for voting.