I have no more to give…..

 

So, now we have completed our family unit my next step is to return to work – full time.  I have had the odd few part-time jobs, which weren’t great, but made me feel better in myself until the hiccup for which your response was ‘well l would jack it in if l were you if it is that bad, and it is not like it is that many hours work in the week.’

For me the issue lays with the fact of your job and your lack of get up and go.

For many, many years now l have been bringing up your children whilst you were out pursuing your career as it is traditionally known. You work in a company which is predominately functioning on the ideology of patriarchy.

Although you moved departments, a chance for your own social mobility, who was the person that encouraged you to apply for the position as you were in two minds – me.  You got the job and you became happy again, you were learning new things, you received a new qualification.  The job even enabled you to eat and spend more time with the family and it was flexible you could (if needed to) work from home.  Homelife improved some what, l started feeling like even though we are married l was not a single parent anymore, you were able to do some school runs, attend school performances, things like that.  However, you received notice that the department you were now working for was having its funding withdrawn and you were all going back to your original positions.  This was bad news all round, for l had found another flexible job myself that allowed us to share child care and both earn an income.  This news also meant the return of your inflexible rota.  You were annoyed about having to go back to your old position, but have not had much get up and go about finding alternative employment.

When addressing your get up and go, l fully understand that you have a job and we need to have a crust coming in.  However, l can no longer deal with your child like tantrums which you bring home from work (l have bore the brunt of many of these over the last few years, none of which are physical, l must stress).  With this impending return date looming there has not been much production of change.  In my eyes you are just rolling over and playing dead in my eyes (possibly because you will still be earning a crust).  With this comes  fact that even though my job is flexible l will not be able to full fill to it’s potential, l will not be known as someone other than mum or wife, l will not be doing something that l enjoy and l will not be able to find what l class as meaningful employment but that of a dead end job – which society has no issue with me taking, but l do.

They say behind every good man is a strong woman, well l can no longer be strong, no longer have l the energy to kick you up the backside and motivate you in to finding something else.  I am mentally and physically exhausted.  You need to help yourself.  Talk to yourself in the mirror maybe and tell yourself exactly what you are telling our children about finding a job. After all it will highlight one thing – if you really want to change jobs.

The children are independent to a degree, but have medical issues which will never leave them but l hope l have instilled coping mechanisms in them so they can take responsibility for themselves, some of which you yourself like to take credit for.

Society expects me to get a job, well thats all fine, fair and well – l want to work and have my own identity, but how on earth can l when you have a job which is not flexible, has a rota that is so out of whack a pre-school child could schedule better, certainly not forgiving on the family front, and is so profoundly set in the ideology of patriarchy!

This might seem selfish and very stereotypical, but l have given up many years of my career to raise children we both wanted, so now when l come to ask for something for me, something my sacrifice has given you the privilege of doing – the same of which l am asking of you now – there is no give!

The short and long of it is, l want to work, you need to stop taking and give a little, you need to find your get up and go, that got up and went without you, show your children how to compromise, and hopefully make a household happy again.  I feel l have given all l can and l now have no more to give, the ball is in your court now.

Oh, and l am fully aware that as and when l return to full time work l will have two full time jobs, on of employment from an employer and the other, running the household,  you all still do not know how the washing machine works!

(To all that read this l am sorry if it seems like the rambling of a stressed out woman (which l am), who is just retelling something that of history repeating itself, but society does not work fairly for everyone, l believe meritocracy will never be achieved no matter who governs our land, and whilst their is still patriarchy woman will still suffer because of it.)

 

 

 

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My Family, and The Rare Medical Condition.

So, it seems that if you have this rare medical condition, you must also have special needs, according to those in the educational system.

The lack of knowledge regarding this medical condition seems to make everyone panic!

My child does not have learning problems/special needs, but has a physical disability that it only noticeable when having an episode.

Therefore sending my child to a “special” taster day for further education is not what is needed.  To be sat there making grass-heads, please this was done and dusted in pre-school.   We are now embarking on our G.C.S.E’s.  With school reports reporting that we are on the right track,  grades wise, what cause was there for this today?  I am at a loss to understand why.

With this rare condition physical help is what is required during episodes, educationally we are sound!!!  More understanding is required!!!

 

Incomplete Sentences.

I find it quite staggering as to how much damage an incomplete sentence can do!  The incomplete sentence can be interpreted by anyone in anyway.

We have had a medical letter with an incomplete sentence interpreted in the wrong way, it has caused so many problems, brought so much heartache, emotional stress and worry (to name but a few).  It has caused an emense feeling of unworth, invalubility, it could well take me, if not all us to the brink.

 

 

My Family, And The Rare Medical Condition

So what happens…….

Well my guys have a defective sodium channels which let potassium into places where it should not be, causing an episode.  This can affect anything from one side of the body or the other with paralysis or even total paralysis for the whole body.  This means their mobility is greatly compromised and they would need help with dressing, tackling stairs, the most normal basic day to day things we take for granted, to name but a few.

We had the children D.N.A tested when they showed signs of the condition, which means they were born with it.  It is inherited.  The test just confirmed our suspicions.

We do a lot of what could be called preventative work to try and limit episodes, but what could be preventative today might well be a trigger tomorrow or a couple of days down the line.  We have the children on regular medication – which is not a miracle cure, as it can work one day and not the next.  It is used to help the children excrete excess potassium.  Their diets are closely monitored so that their food is not too high in potassium, and general planning of a our day to day lives, not getting too much or too little exercise, (this is only a brief insight).  All of the preventative work we do could be in vain as there are other things that act as triggers which we have no control over, like atmospheric conditions, common colds, vomiting and diarrhoea, headaches (to name but a few things).

This is a rare condition that not a lot of people know about or understand, but one thing is for sure my children are not going to grow out of it – they will have to live with it for the rest of their lives – it is part of their D.N.A.

I would like to give you an insight into our experiences with this rare condition, if you would be interested in reading about them.

 

 

My Family, and the Rare Medical Condition.

So, my three beautiful children all suffer from the same rare medical condition known as Hyperkalemic Periodic Paralysis, or HYPP for short.  HYPP – a muscle disorder characterised by episodic attacks of muscle weakness,  which is associated with increases of potassium concentration that has leaked out of cells in to the bloodstream.  Their condition is not evident to others until they are experiencing, what we refer to as, an episode, therefore they look normal.

I have discovered in my quest for knowledge and advice regarding this medical condition that there is, roughly, 1 person affected to 200,000/250,000 non-affected people.  It is also not as prevalent here in England as it is in other parts of the world.  Also that this condition was only really discovered in 1955.

So what happens……