Saturday, 26 April 2014

Shifting Sands

 Never a truer word said!  Whatever happens there is always another choice.

This past week I have felt as if I have been walking on shifting sands, having to intermittently steady myself regain my balance and slowly cautiously walk forwards feeling unsure with every step.  I feel we have now reached firmer ground, the sand held more securely in place by sea grasses yet a thoughtless step could still cause us to slip and fall.

I suppose the catalyst for this has been looming deadlines regarding the girls education which has underlined in thick black sharpie exactly how unwell they all are. Funnily enough it is much easier than you would imagine to view the girls lives as not THAT abnormal, they're not THAT sick in order to keep on going day in day out.  Then deadlines arrive and you realise exactly what they CAN'T do and that in actual fact they are really not as well as you had allowed yourself to believe.

Tasha and Tara are trying to focus on positive goals which can allow them to pursue their photography/media ambitions.  College/school are not a possibility for them - they couldn't physically manage to get there and back, let alone study whilst there too.  So we have opted for Nisai Academy for them to take the two year Maths GCSE and the one year English iGCSE. The TYMES Trust advocate Nisai particularly for children with ME as the Academy are used to working with these children and understand the nature of the illness. Also the girls can "attend" their lessons in bed in their pyjamas if necessary and all the live lessons are recorded to allow for revision, brain fog issues and if they are unable to attend the live lesson due to any ME relapse then it can be watched at a later date once well enough to do so.  We shall be starting these with the girls in September.

Keisha is due to take her AS level exams soon.  This is a HUGE problem  Her college have been above and beyond understanding and incredibly helpful and supportive.  BUT even with all this help and support, providing a quiet room to take the mock exams in by herself - she has not been able to take them - she has had numerous severe panic attacks, PTSD issues and so I have invigilated the exams (emailed to my by her tutors) at home.  EVEN then she has been unable to take them - hyperventilating, shaking and just unable to cope.  We have contacted her psychiatrist and our family liaison worker and made the decision along with her College head that she should sadly, now drop out.  The assault that took place towards the end of last year has impacted on her terribly and until she receives the specialist therapy she needs we are in a place where she needs no further stress or pressure in her life.  We are looking at local animal sanctuaries to see if they can find some voluntary work for her to help care for the animals and also perhaps a gentle jewellery making course or something in a similar creative vein.

The most important lesson from all this we are sharing with our daughters is that life throws you many different challenges and it is how you rise to these that counts. You don't have to follow the well worn route that many others take - sometimes you have to step off the path to find your own way forward.  For my girls this has proved to be so very true.  They are all incredibly bright and artistic girls - if health had been their friend then they would have followed a mundane academic route and done very well too.  However, life has chosen a different path from them and thrown them a few curve balls to set them on their way.  Tasha is hoping to find a future with her photography, Tara media and Keisha jewellery making, ceramics and possibly some other complementary therapies such as crystal healing etc.  

We have no doubt in our minds that even though the girls will not hold pieces of paper printed with qualifications their futures still hold so much promise for them.  They have ambition, drive and artistic talent which we know will carry them forward and be their route to provide for themselves when they fly the nest and strike out on their own. 

So for now - we negotiate the shifting sands that are under our feet, taking each day, week, month, year at a time.  Facing each new challenge together as a family, standing together to support each other through our sticky patches pulling each other along.
So a message for my wonderful trio, a wonderful quote which is so true "I love you and would never leave you.  During your times of trial and suffering when you see only one set of footprints in the was then that I carried you."

Monday, 14 April 2014

How to explain Pacing to Teen?

Pacing, I think everyone with ME will agree, is difficult even for us adults to get our head around let alone get it through to a teen.  Teenagers have that desire to "do" and become exceptionally frustrated when sick and they simply just can't.  So when they feel they have some energy they want to spend it all at once, to be able to "do" something they have longed for - spending time with their friends or to go out on a trip, to hell with the consequences! That's great for when you are in that moment but then when the relapse/crash hits and they are in bed and suffering all that happiness and joy they experienced is forgotten because of the pain and discomfort of the relapse.  Life for any sufferer is unfair, but watching a young person suffer and struggle, missing out on the fun, rough and tumble, adventures and excitement of childhood is just devastating.

I have struggled to explain pacing to the girls, it's merits and long term promises.  So far we have been fabulously unsuccessful at implementing it to a point where results can be seen.  I am guilty myself of allowing them to participate in something knowing full well they will pay the price later - the worry being that they will not get the opportunity to do x with y again in the future - do you know what I mean?
THEN a very good friend shared this excellent article by Dr Sarah Myhill with me which explains everything we already know but set out so clearly that it makes perfect sense - and perhaps it will help me finally find a way to explain pacing more clearly to my girls and HOPEFULLY then (if we can put it into practice as set out by Dr Myhill, this is yet to be established) we could potentially reduce our episodes of Boom and Bust that we are currently experiencing.

For those of you who are unaware of who Dr Myhill is, she is a UK doctor who is respected for her knowledge and work with ME/CFS patients and has now become a leading specialist in this area.  She has helped many people with all aspects of the illness from diet, supplements, symptoms relief and pacing.

I am presuming that by now everyone knows that with ME any form of exercise can have a very negative impact on the sufferers health but what many may not be aware of is that emotional stresses can have equal if not more of a negative impact on health too.

Of all the ME sufferers I have met, including my daughters, they are all people who are full of drive and prior to the illness were active and ambitious people - by no means "lazy" as they are often portrayed.  The problem with this is that most ME patients are impatient to "get better" to improve their fatigue levels and so often end up in the boom/bust cycles because they push themselves beyond the limits their body can tolerate. This then also brings forth frustration and disappointment when they then have to stop and rest in order to climb back out of the relapse that the activity has created.  Thus they don't improve - their health stagnates into this cycle.  The key to progress and regaining health is to pace - to limit what energy you use and stop all activity BEFORE you have used up all your energy reserves.

What causes this delayed fatigue is a question I wanted answering at the beginning of this illness and Dr Myhill answers my question beautifully - so I shall quote her directly...

"We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. 

[Note: Dr. Myhill’s 2009 research paper - "Chronic fatigue syndrome and mitochondrial dysfunction" - suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]

Cells have to make brand new de novo ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms."

The problem with many ME sufferers is that first off, at the beginning of each day, you have far less energy reserves than a fit and healthy person.  Then throughout the day, just doing what healthy folk wouldn't even consider an activity - tasks such as washing your face or cleaning your teeth, deplete their energy quite significantly.  Then you have to account for going down stairs, eating, getting dressed etc - quite often by the time a person has washed, dressed and eaten breakfast they have pretty much used up most of their energy reserves for that day.  Dr Myhill puts it far more eloquently, so I will quote her again...

"Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.

• The CFSs only have £100.

• What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.

• Furthermore, you are only allowed to spend a few pounds in one session – then rest.

If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less – but with careful pacing you will end up doing more!

I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!"

She notes that most sufferers compare themselves to how they were before they were sick - this is unrealistic and will lead to not achieving your goals.  Accept what you are able to do on any given day - AND THEN DO LESS. That is the key to pacing - not easy though is it?  How many times have you thought that even though you are tired you'll "just get this done" so that you don't have to do it tomorrow.  That could be the task that tips you over and puts you back into relapse.

Also, I have to clarify that REST means just that - not to do anything at all, just to lie quietly flat on your bed - ALONE in your bedroom too, without any stimulation and relax.  This means no mobile phones, not TV, no computers, no reading, no music in the background, no chatting to friends or family - just peace and quiet and time to relax as fully as you possibly can.  Those activities I have just mentioned have to be rationed throughout the day and accounted for from your £100 you have to spend.  Dr Myhill states that it is important to rest lying down flat on your bed as it makes pumping the blood around your body much easier and therefore is less stressful on the body.  She also adds that a little caffeine has been shown to be helpful in this job too - so a little dark chocolate is encouraged, which is a bonus.  She also states that it is VERY important that these rest periods are included into your daily programme so to build it into your routine, EVEN on the days when you feel more full of energy than usual, you must STILL take the time out and have this rest period.

The problem is - have you ever tried prising a mobile from a teenagers hand?  I swear they are welded onto them!!  AND then getting them to lie still and rest without hearing the words "but I'm bored!" "can't I just have my music on" etc.  Sounds such a simple thing to implement but not so easy in practice!

The next part though, is critical to effective pacing. To only do any activity IN SHORT BURSTS - I can hear the ensuing laughter from all parents with children with ME!  This is the part I struggle most with as a parent caring for two teenagers with ME, when they have the energy they want to spend it all at once and are hugely resentful of me stepping in and saying "No, you must stop now and rest."  To quote Dr Myhill again she says "You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time."

So, back to pacing - what are the steps...
  1. Reduce all physical and mental activity to reach your baseline - what  you are able to do each day without bring on a relapse/crash situation.
  2. Add into your day the regular rest period, follow a good diet that suits your needs (Dr Myhill advises the Stoneage Diet) - we personally follow a high protein, low sugar, low fat, gluten free (where possible) high veg & fruit diet.  Taking supplements where advised and any other medications.  Get to the point where each and every day is the same, with very low levels of activity which are not causing any detrimental effect to your health - this is your baseline.
  3. NOW this is the start of pacing, very slowly and gradually add in some activity to your day.  Add the same amount of activity to each day AND NO MORE making sure that it does not cause any detriment to your health.  If it does step it back again a little.  When you are able to tolerate that small increase of activity each day without and detriment then step it up just a small amount.
  4. Dr Myhill stresses that the key to this being effective is to VARY the activity you are doing on each day - this is in order to exercise different parts of your body and brain on each day.  She also tells us that any visual activity is far more draining for the body than any audio activity.  So when planning your activity this needs to be taken into account, for example; watching television would have to be for a shorter period than listening to music. 
  5. Physical activity/exercise has to be very carefully managed - initially just gentle stretches and increased only as and when no detrimental effects are experienced.  We find gentle stretches in a warm bath or pool (if able) are very helpful as the water supports the body whilst exercising the muscles.
  6.  Very slowly and cautiously increase the physical and mental activity - always monitoring if any detriment is experienced.  Any post exertional malaise experienced will indicate you are doing too much and so step it back a notch until no PEM is experienced. 
A very useful tip is shared by Dr Myhill about managing activity, which she attributes to one of her patients, but is also something our ME Consultant asked the girls to do in relation to the people they interacted with, was to categorise activity into three groups;
  • Energy Giving
  • Energy Taking
  • Energy Neutral
This whole process of pacing is to help you find the balance within your day and to ensure that the energy input equals the energy output.

Some people find charting helpful - I am planning on charting the girls activities into the three categories and then planning their day around it - so days where they have appointments need balancing with periods of rest.

It has to be also noted - and something which was very much underlined by our ME Consultant.  That when you become sick due to a viral or bacterial illness and have ME, this can in itself cause a relapse/crash situation.  So, do not to be disheartened by this setback instead be aware that it will mean that you will have to plan in this situations to go right back to basics with regards to pacing - but to do this only once you have recovered from the illness - then with your pacing knowledge you have to build yourself back up again regarding activities you are able to do in a day.

We have been told that once you have mastered pacing that the crashes will become less severe and frequent because you learn to tune into your body, it's needs and limits.

The most important message is to learn to ask and accept help and to learn and acknowledge your limits. 

It's not easy I know and I am aware that we have a long journey ahead of us - especially when teenage hormones and stubbornness are involved!

Wishing you all luck on your pacing  journeys and will keep you posted on how we get on with ours.


Sunday, 6 April 2014

Bakewell Pudding

Comfort on a plate :)

Bakewell Pudding
  • Ready made Puff Pastry
  • Cherry Jam
  • 165g Ground Almonds
  • 1 65g Caster Sugar
  • 75g Softened Butter
  • 5 Medium Egss, beaten
  • 3/4 Teaspoon Almond Essence
  • Flaked Almonds(optional)
  1. Pre-heat oven to 200C / 400F / Gas 6
  2. Roll out the pastry on a floured surface and use to line a deep flan dish.  Knock up the edges with the back of a knife and then mark the rim with the prongs of the fork.  Fill the bottom of the pie with the cherry jam.  Chill in the fridge whilst making the rest of the filling.
  3. Beat the softened butter until soft and creamy and then add the ground almonds, sugar, eggs and almond essence.  Mix until smooth.  
  4. Pour topping over the jam and put pie into the oven to bake.
  5. After approximately 25 minutes take out of oven and sprinkle with the flaked almonds then put back into oven for a further 5-10 minutes - until the filling is set.
  6. Serve warm or cold with custard or cream. (p.s. we prefer ours without the flaked almonds on top) 

Mmmmm, warm buttery filling with oozy cherry jam - yum!

Friday, 4 April 2014

Hatching Plans

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...