we are mighty for we fight a mito battle.
What is Mitochondrial Disease?
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection
I will now tell you what its like to be effected and how not to judge us if you are not aware of it all.
................ this is big,
the funny thing about mitochondrial disease, you can go all your life without knowing you have it, or, you can go half your life without knowing, but also you can defo start your life knowing and even worse children are worst effected as they are still developing bodies so this makes sense that they are. More children die of mitochondrial disease than childhood cancers.
Mitochondrial disease comes in all shapes and forms, but the basics are - its an energy disease.
the Mito is a tiny part of each cell in the body which converts food into energy, when these do not work, the body begins failing.
some rapidly fail and some with specific mito disease fail more so than other parts of the body, depending which is worst effected.
it is multi systemic and variable.
and once diagnosed you then become aware that its genetic and the whole family must become aware of how it works, and how it can develop and all families should be offered genetic counselling.
it helps to stay informed of choices.
there is no cure and no treatment.
but most people are on a vast cocktails of vitamins, CoEnzyme Q10 (In Ireland this is NOT on the medical card) which is frightening and other types of medications too.
now i will add a bit about wheelchairs because its a vital component to any one's life, especially if they have mito disease.
some days mito people might be OK, that is they may function better than on other days.
Most will rely on the wheelchair part of the day, all of the day or as the day progresses.
some will be in a wheelchair all day and every day.
it can depend on a lot of factors, including stress.
this is a high energy burner, STRESS can burn and hurt bad.
if you see a person get out of the car and walk to the back of their van/hatch back and take out a wheelchair, it doesn't mean we have a fake on our hands.
we have mito in our bodies and we are giving whats left of energy a chance even to get out and function and we may have less on this day or indeed this may be such a familiar pattern that people with mito know that the most they can do is drive, take out the wheelchair, use it and pop it back into van/car and go home.
Once home they may be able to walk around their own homes, plenty of seating, plenty of resting booths.
but not so when out.
you cannot sit down on the street when the banks are all used up.
you cannot lie horizontal when sleep is beckoning rather faster than anticipated.
its also a progressive conditions as mito die at varying rates and the wheelchair may be a permanent feature and may replace legs entirely.
by the time mito experts understand they have mito and know about it, they also know how their body functions and what they need to do to get by and operate in the everyday world, including getting out and about.
this is common my friends with any condition - YOU KNOW you are sick when you are sick!
you know you are tired when you are tired.
and most know they are too tired when they are too tired!
for mito though we are tired all the time, without a let up even with sleep.
Sleep too can bring its difficulties.
some go to bed with breathing apparatus.
I am nearing this phase.
for the energy is lowered by night time and for my twin and i we find it hard to sustain a breathing pattern and find it physically difficult to keep breathing.
its very scary when we overdo it.
we also know our hearts are effected as we feel it. it does what we call 'something funny.'
this is about the biggest thing my twin and i will have assessed when we get to the UK.
we also are now at the stage we are using wheelchairs almost daily.
personally speaking walking is now agony for me.
with arthritis, sjogrens syndrome, a moisture gland condition but also multisystemic (does effects the joints and causes in its own right chronic fatigue as Venus Williams is all to aware of), fibro which effects pain levels and neuro stuff going on i am not able to walk anymore in comfort at all. Each step i take is with a grimace.
i also have a muscle wasting condition and dystonia, my legs feel like lead weights.
my feet are deformed so they are crippled inside them shoes, which are supposed to help but do not.
I want to be in the wheelchair all the time
but also i know to function to max i have to walk.
we need to walk and keep whats left at optimum and sometimes that requires pain to do this, even if this is only for short spurts daily, i want to keep this up but i don't like it.
I hate it.
it isn't a factor for us to walk fifty yards so you're OK mate.
this isn't about the physical act of walking. its about pain, exhaustion and fatigue like nothing else.
if you have had to go to work, with a belt of a virus as well as falling half way down the stairs and missed breakfast this will give you an idea on a small scale what it could be like if you did this everyday and much more.
you cannot visually see if a person has mito in a lot of cases, but in others you can, many children who have mito are visibly unwell, in wheelchairs and sometimes suffering many manifestations including 'seizures.'
but many in wheelchairs look healthy specimens!
others look very sick.
what i am trying to say, this is the invisible illness and condition, and there are a lot of conditions like this.
You know the one of 'well, you didn't need it yesterday why today?'
or 'you were fine yesterday!'
'you don't look sick to me'
'you could if you made an effort.'
'have you tried?'
or 'just this once you can stay up/out late, awake.'
or 'bloody hell i put the kids to bed last night why AGAIN tonight?'
or 'its your turn and i am not doing it, ' oh oh oh, agony.
how many households have rows, fights and misunderstandings occurred with a mito adult or child in that home?
how many have found such a household and relationships just too much a struggle and members who are healthy have left for good?
how many sickies with mito have caused rifts to occur which mean isolation of that sickie from all family now takes place and there is that sense of alienation, just at a time you need 'family' most.
this week in International Mitochondrial Awareness week.
its to try and get people focused, for one week only on this very long word for a very big condition.
its a dreadful condition.
To be aware is to allow you space and others space to think about how others cope with such a condition and how best to respond.
this is the purpose of being aware.
AWARE to all the permutations, and all the possibilities, living, caring and knowing about mitochondrial disease.
Some one near you may have it.
some one near you does.
it can be right beside you and you may not know it.
you may have it and may not know it.
or suddenly you found out that a member of your family has it.
but in this instance, I have it and so does my twin.
At least we have been told as much as much as anyone can be.
its an educated guess at this right now, but now we need to have further investigations to pinpoint how it effects us, how badly and what care plan to put in place.
I am supposed not to come back to Ireland until it is safe to do so.
as my learned GP has said to me recently - you could be away a very long time!
i am hoping that the HSE will see this and be aware.