To think carefully about how to help families navigate the education system when their children have an invisible illness like Ehlers-Danlos or Charcot Marie Tooth Disease.
I don’t know how this one will pan out but I am passionate about helping others in this area. So many families struggle with school. So many schools struggle with how to help children.
An increasing number of families are choosing to home educate their children. Some families may be unsure of the flexibility that may exist within the education system to attend school on a part time basis on medical grounds or the evidence that may be required to put this in place. They may not know that their children may be entitled to an Education Health and Care Plan (even if they are bright) if their illness impacts on their ability to access education. Or the charities and independent bodies out there to help and support them. The law is complicated. I have witnessed the ‘the System’ fail some families and feel like a constant battle to others and that frustrates me, upsets me and saddens me. I would love to see the situation change and for good practise to be shared and celebrated. You can read more HERE
To post regularly. All the time people like to read my posts and I like to write them!
To keep myself moving everyday. To stay strong. This is so important, I will keep moving. On bad days I will definitely keep moving. When I’m in a POTS storm this is essential so that my body doesn’t become de-conditioned. When joints are slipping or dislocating targeted exercise is important to strengthen the muscles around the joints to hold them in place, to do the job the ligaments can’t and to keep the synovial fluid lubricating my joints. It is also important to keep my muscles strong long term, they will waste more, particularly in my hands and feet/ arms and legs but I am determined to keep them for as long as possible. Movement of any kind is good.
To walk the dog every day. Yes! And to try to walk a little further before the onset of severe pain. Or to rest then carry on. (I’m not very good at that!)
To complete a 5k walk. This is ambitious and will depend very much on my knee holding out, watch this space! Any volunteers to join me?
To cook good food so that we all eat well. We generally all eat gluten free at home, because I do, apart from the occasional pizza or the kids favourite pasta. The children’s sugary snacks are going to gradually decrease to. I’m also cutting out all added sugar; on my breakfast, in tea. It helps to balance my blood sugar levels and stops me getting shaky.
To drink more water. More water, less tea. And more water and fluid for all the kids too.
To pace my activity well to manage my pain better.
This is always a work in progress but it has to be on the list because it is the best way to manage pain long term alongside keeping strong. Read more HERE
To keep working with the right doctors in the right places.
It’s really important to have a team of people that you trust, that you know understand your conditions, that you are confident will make the right decisions in terms of your care. It has taken me a very long time but we now have that team for our family. I am happy with all of the doctors, therapists, orthotists looking after us. We do not need constant medical care, there is no magic cure but we need access to the right people at the right time to help us all to manage Ehlers-Danlos and Charcot Marie Tooth dIsease long term. If I haven’t been happy or confident in the past I have moved on until I have found someone who can help, I have researched, travelled, stood up for myself but I have got there in the end. Being seen by the wrong people has just meant going round and round in circles (for decades) with the wrong treatment, surgeries that may have been avoided, mis-diagnoses (many) and so much time wasted not understanding what was going wrong with my body I am committed to my children stories being different. Read more HERE
To keep all my babies strong and motivated. This always feels like an uphill battle to me! No1 has to stretch more, whether they like it or not! Which is very important now as they have joined a dance crew. No2 has to do their strengthening exercises as they have bruised, sprained feet just from walking around as their ankles and feet are so flexible. No3 starts daily Physio and OT at school so regular communication with their TA and keeping the programme fresh will be of utmost importance. Plus keeping generally smiley, happy and bribing where necessary, the goal for this year to make moving fun.
To not beat myself up if I don’t achieve something one day. Tomorrow is a new day. Some days I won’t get to walk the dog, to get to my pilates class, we may go a week without doing the kids physio. Tomorrow is a new day to start afresh. There may be times when these goals may be too big for me to achieve. I wanted to do a 5K walk last year but I couldn’t walk anywhere without my hip subluxing and my SI joint slipping it has taken over a year to stabilise things, I still do my physiotherapy exercises every day. Goals have to be realistic and may need readjusting. On some days walking to the car is a challenge, sometimes it’s about taking baby steps in the right direction.
To reply politely when people comment on my daughters wheelchair. The aim is to be polite and use it as an opportunity to raise people’s awareness, to ignore the pitying looks and smiles. The reality may be different if Rubie is on the receiving end of someones unkind words, it’s early days, watch this space.