Oooh isn’t it a great feeling to hatch plans for a better future?
This week has been a very eventful one for us all round – in a sort of negative events resulting in positive planning process kind of a way.
Tasha is mentally and physically at rock bottom. This is making everything she does very difficult and seeing the light at the end of the tunnel something she struggles to believe in. We are adamant that we can turn this all around. We realise that Tasha has very low energy resources and that we have to plan everything she does carefully into her OT pacing schedule to ensure that she doesn’t drop down physically any further than she is already. So for this week coming all she has to do is;
a) get up and dressed before midday everyday
b) come downstairs for an hour every day round about late afternoon.
We also spoke via the phone to her psychiatrist about her sleep issues – she can fall asleep but is unable to stay that way and wakes up repeatedly throughout the night which is resulting in her becoming more exhausted day on day. This in turn is impacting massively on her physical health and energy levels we also wonder if it is a contributing factor in her awfully low mood. The suggested treatment for both of these is that the psychiatrist would like Tasha to consider switching from her prozac to mirtazapine (like me) as it has a sedative effect and so will help with her sleep. The appointment to discuss this and get the necessary script will be on Monday morning – so not too long to wait at all. Meanwhile we are still waiting for the CBT referral to provide a therapist but due to budget cuts and the number of therapists available we know this won’t come through for her for several months yet.
Keisha, the poor love, started having severe pressure headaches – they started to become so frequent that one ran into the other until she was almost constantly in a state which made it a struggle to function. SO, quick call to her lovely psychiatrist and it turns out it is a reaction to her citalopram. She is now off that and back on the prozac at 20mg until the citalopram is out of her system, then we will review and possibly increase her prozac dosage.
Today = no headache = result!
This is fantastic as Keisha, much to Tara’s disgust, has gone on a trip to Twycross Zoo with College to study the monkeys although she tried to appease Tara by promising to take as many photographs of monkeys as she can. For our part we will take her to visit them herself once she is well enough to make the most of the day out.
So talking about Tara, she has been very low in mood recently because her ME crash seems to be taking an age to recover from and she is also really fretting about her education and how impossible it seems for her to gain her Maths and English GCSE’s going via the route we are currently on. To be honest, we hadn’t fully appreciated how greatly this was affecting her and the stress of the worry, we feel, has been a huge contributor to her current crash and so we need to seriously address this. We have also had word that the OT referral has gone through – our first appointment with her will be on 14th April and this will be to focus on pacing and finding ways in which to plan education into her recovery too. The CBT referral, like Tasha, may well take some time to come through – so for both girls learning to try and control their anxiety and panic is tricky in the meantime.
Both myself and The Dave filled in our forms for therapy via our GP and we have appointments for 2pm this coming Monday – The Dave for CBT and myself for counselling sessions. So everything does indeed seem to be falling into place *crosses fingers, eyes, toes, legs and hopes not to have tempted fate*.
So, hatching plans, I hear you ask (or do I?) – yes that is precisely what we are doing.
After chatting with the girls, Tasha and Tara both have very set ideas of what they would like to do with their futures. Tasha wants do follow a photography course and Tara a media course – both held at the College Keisha attends, which we think is a very sympathetic and understanding College and have no qualms about them having the support they need as/when they enrol there. The requirements for them to attend are to pass the Colleges interview and also to assess their work (so Tasha needs to build up a photographic and Tara a film portfolio to show them) AND to have both Maths and English GCSE’s.
Now – due to their ME, accessing mainstream education has been impossible, they just don’t have the energy to withstand going and attending these venues even on a reduced timetable. This is mostly due to the many various stimuli that there are in these places, with the noise and crowds which are not only overwhelming when sensitive to sense over stimulation but also trigger their anxiety and panic – which drain their batteries very quickly.
SO – the clock is ticking and we are not gaining any ground even going via the hospital tuition at home/in the ward. What do we do, where do we go from here?
Well, what we have done is sit with our heads together, with our calculators and finances and try and work out a cunning plan that will enable the girls to gain these precious Maths and English GCSE’s and what did we come up wtih….. *insert drum roll and builds up the tension* NISAI Virtual Academy!
Yep, that is where we are now – we have spoken to the folk (who are incredibly helpful) about this and we are enrolling both girls to take the English iGCSE course, which is only a year in duration and then JUST Tasha to take the Maths GCSE course BUT for Tara attend the virtual lessons with her (as it is a two year course and follows along with Tara’s peers in mainstream school). Now it is NOT cheap by any means (which is why only Tasha is doing the virtual Maths course, as Tara will take the actual exam via the mainstream school), but after watching a virtual lesson and seeing how it works we are sold on it. Plus Jane Colby (an ex- headteacher herself) of TYMES Trust backs it wholeheartedly as a means of children with ME gaining qualifications. However, the reason we are not enrolling Tara to take the virtual Nisai course exam is because we are NOT removing her from the school roll at the secondary school she is registered with. This is because, to save on costs, we want her to sit the actual exam in the school (so paid by them) but for her to take it in a classroom on her own, as Keisha did. We are also hoping that by Year 11 Tara will be strong enough to attend the odd Maths lesson there amongst her peers (although still following the course via the Nisai virtual school alongside Tasha) and by staying on roll it will also enable her to join in with her friends at the school prom/photograph day too.
So – that is our cunning plan.
We will start the courses in September, so Tara will continue with her Medical tuition until then and both girls will be going through their work as and when their ME enables them so that they are ready and at the right place to start their courses.
The beauty of the Nisai approach is that the girls can sit on their laptops to attend their classes in their pj’s and in bed if necessary with no make-up on or having to worry what they look like to others (as there is audio feed to their classmates but not a visual one). All the students choose an icon from a menu to represent themselves instead of a photograph – also the lessons are recorded and so they can save them to watch as many times as they wish (which when you suffer from brain fog is a really BIG plus) and also to revisit for revision purposes too.
So that, is as they say, that from me for this week.
This weekend I shall mostly be trying to snack on healthy foods (as a side effect of my tablets is stimulation of appetite – darn it!) and try NOT to eat chocolate & step away from the Banana Bread! This is because, in the words of the Fast Shows Jesse;
This week I ‘ave mostly been eating Banana Bread!
Ho hum, mind you – next week I will no doubt be replacing Banana Bread with Bakewell pudding as I have faithfully promised to make one for Tara on Sunday (’tis a fabulous recipe and you use puff pastry instead of shortcrust – if you are REALLY lucky I may just share the recipe with you next week).
Anyhoo – this blog has been something of a rambling one and so I best cut it short and go and do something productive, whilst avoiding spilling, knocking and breaking things – if I were Worzel Gummidge today I would ‘ave me clumsy head on!
Have a fabulous weekend all, and, just for Tara, I shall leave you with a picture of a monkey – just because…