The Perversion of Inspiration

Recently I had an experience which made me realise that for people with a disability, attitude determines our experiences and achievements much more than anything else…

But I don’t think it’s heroic to try and do things for yourself, even if it is a bit of a struggle. That is part of living an independent life. Generally you feel a lot better about yourself when you try, than when you just decide that you can’t do something.

There is no doubting that all of this is true.  And because of this, I am not linking to the article, or publishing her name.  I wish to use this as an example, not pick a fight with someone who I think is just trying to help.

I am trying to believe that she just wasn’t thinking, rather than that she actually believes this shit is true for all people with a disability.  I am trying to believe that she is just talking about herself, rather than that she actually believes this shit is true for all people with a disability.  From other parts of the article, it is clear that she knows nothing about what disability is like for some people.  And I would leave it alone, except that each time I read a piece like this, I end up in tears, and feeling like someone has just punched me in the stomach and slapped me in the face at the same time.

I think that it is time.  It is time to come out in the open.  Lay it all out.

It’s ironic really, that people on the other side of the disability divide talk about having a good attitude, and people on this side of the divide feel that part of having a good attitude is not complaining about the details of what we go through.

It was this keeping the details hidden I think, that led to some controversy over my blog post Preferred State Of Being.  I was told by one person with a disability that I should seek professional psychiatric help and that she has never accepted a cent from the government (like the fact that I have makes me some sort of leech).  Another (with the same disability!) told me off for being negative and scaring others with the same condition.  Thankfully, I have a psychologist who has taught me about other people invalidating your experience, and so while the comment still hurt, I didn’t completely take it on board.  I know she has a good heart despite her comments.

The clincher however, came when one person stated that while she could choose to stay at home, she instead chose to go to university and chose to work, and chose to go out and have a life.

I had a little something to say about that.  And to her absolute credit, she put aside my anger, and listened to what I was saying, and we ended up having quite the conversation with another who initially had a go at me.  I have great respect for these two women for that.  I am thankful to them.

One thing that we worked out together is that people with a disability seem to have two major issues – one is that people such as these two have problems with people thinking they are incapable, when they are not.  The other is that people like me are not as capable, and can not get the support we need, to do anything more than simply exist.

I think the tipping point in that conversation was when I did get angry.  Choice?  I explained to them how I do not choose any of this.  I explained to them that the problem was not that I had trouble with mobility (although I do), but that I am also very ill quite a lot of the time.  I gave a list of some of my complaints.  And that is when we started to understand each other.

So here is my list.  The list that I hate writing, because I don’t want people to think that I am after attention, or whatever.  The list that I hate writing because quite frankly, I really would rather just get on with things.  The list that is being written simply to educate.  So please, when you read it, just think “could be her, could be anyone”.

* I have Aspergers.  I won’t go into detail about what that is, as you can find that information in many other places if you are not already aware.  I am including it here, because it affects my communication skills, and therefore, affects my relationships with doctors and other health professionals.  I would ideally love to have someone come with me when I see health professionals, so that they can help me communicate (and help me understand), however as I am intelligent, I am not eligible for funding for this type of support.  It doesn’t affect my physical life at all, but it does affect my health CARE.  It also limits my life experiences, because again, I am not eligible for help to navigate such things.  An example would be when I wanted to go to a particular support group, but I froze the morning of meetings.  Once the facilitator offered to take me the first two times, so I could get to know the people a little, then I was fine taking myself after that.  She did this out of the goodness of her heart though, and she is the only person that has ever offered.

* I have Ehlers Danlos Syndrome (EDS, diagnosed by geneticist).  A lot (if not all) of the following problems are due to this condition.

* When most people get a migraine, they spend the day in bed.  I have had a migraine every day since November 2010.  Studies have shown that taking 75mg of aspirin a day should only be considered if someone is at major risk of heart attack or stroke, because of the risk of gastrointestinal bleeding.  I am taking 1800 mg a day because it is the only thing I have tried so far that can deal with the migraines.

The higher the aspirin dose, the higher the risk. Aspirin doubles the risk of upper GI bleeding at daily doses of 75 mg and quadruples it at doses of 300 mg.  I am also at higher risk because I have EDS.

* I have sleep apnoea.  I am eligible for a government funded CPAP machine, however I need to rent a machine for two months first in order to prove that I will use one.  This is a good policy.  Then I need to do an overnight sleep study at a hospital in Brisbane.  This is not good policy.  There is no chance that even if I could do the study, that it would be at all accurate.  In order to sleep in a hospital bed attached to wires, I would need to take much more than my usual dose of pain killers.  I would also need to have my husband go with me for the night.  And I need to sleep on the ward, because you have to lie on your back, which I can not do, and so I would have to sleep on a ward where the beds are adjustable.  The logistics are a complete nightmare, and I simply can’t do it.  There are two different types of CPAP machine – those that push the same amount of air throughout the night, and those that adjust according to your needs.  As I have EDS, there is a concern that having a machine that pushes the same amount of air regardless, could do damage.  This is the only machine the government will provide (they are obviously cheaper).  So, I have to find a way to pay for a $2500 machine myself.  Until then, I will continue to stop breathing when I sleep 50+ times an hour for an average of 18 seconds, and up to 45+ seconds, each time.

* My joints hurt, crack, sublux, and dislocate.  The worst offender is my left hip, however last night I was outside when my right hip had to be put back in.  There was much screaming and groaning involved.  I really do hope that the next door neighbours don’t think I was having sex on the verandah.  My hip normally slides out, then needs to be jerked back in, either deliberately, or sometimes it happens if I happen to twist the right way.  Before it goes back in, it aches (quite often like childbirth aches, and not like a small bruise aches), and it grinds, which is a sharper pain.  Sometimes I can still walk (albeit, painfully), and other times I can’t and have to stay put until I get it back it.  My friends are used to FaceBook posts by me stating that I am stuck on the floor and bored.  The reality is usually that I am stuck on the floor and in quite a lot of pain and bored.  My shoulders also regularly dislocate, usually both of them through the night, although sometimes during the day too.  And my knees sublux (haven’t dislocated yet).  My foot dislocated last year and it took three months to get it back in, but it is now always sore still anyway – pinched nerve perhaps?  My jaw cracks every fifteen minutes or so.  It hasn’t dislocated yet, but dislocated jaws are common in EDS, and I am really hoping mine decides to keep behaving itself.

* I have lower back pain that ranges from “ouch” to “kill me now would you please?”  I also get higher back pain when I need to crack something back in place, however this isn’t as often, or as painful.  I used to be able to relieve my lower back pain by cracking it back in, but now, I can’t crack it at all, and it just hurts all the time.  I did try a spinal block, but while I walked better for a few hours, trying to move in any other direction still hurt, and it made my other joints worse.

* I have had my gallbladder removed.  This isn’t a problem per se, however it becomes relevant to the next thing…

* I have major stomach and gastrointestinal problems.  What exactly, I am not sure.  I had a scan which didn’t show anything wrong with my stomach, however it did show a backup of faeces.  Which is not surprising, considering half the time I have to physically remove faeces as the muscles in my bum do not seem to be working as well as they should be.  A common problem for people with EDS is something called Gastroparesis, and I am sure this is what my problem is.  Gastroparesis is quite common for all populations, however without any other concerns, it can usually be dealt with by exercise and a healthy diet.  People with EDS and Gastroparesis quite often die from the condition however.  I am yet to convince a doctor that it is worth investigating, probably because for most people without EDS, it is not that big a deal.

* I also have acid reflux regularly.  Plus, a few times now, I have woken up drowning in my own stomach fluids, which really burns the lungs.  I imagine part of this problem is that I stop breathing for so long when I sleep.

* I have Irritable Bowel Syndrome.  Sometimes I poop easy, and sometimes I poop hard.  Most of the time, I have cramps.

* I feel nauseous daily.  It’s hard to tell which other condition is responsible.

* When it gets too hot, I feel really dizzy and light headed.  I also feel dizzy and light headed when I get up from sitting down, often to the point where my eyesight goes and all I see is black.  I feel nauseous when it gets too hot.  I often have shortness of breath, and chest pains, or my chest tightens.  I am bloated all the time.  I get flushes regularly.  I get cold very easily.  All of these things would indicate that I have Postural Orthostatic Tachycardia Syndrome (POTS), a syndrome that is very common among those with EDS.  I do not “seem” to have the main symptom for this however, which is increased heart rate when standing from a sitting position.  Most people report feeling this heart rate rise and I do not, however I have never been tested either.  These symptoms do add up to a diagnosis of Dysautonomia.  When I mentioned this to my doctor, she had to Google it.  Needless to say, this isn’t taken seriously by health professionals either, although some types of Dysautonomia are deadly.

* I have had tests that prove I have had both hypothyroidism and hyperthyroidism.  I suspect I have Hashimoto’s, although again, I have been fobbed off with medications and left to my own devices by health professionals.  The last time I had heart palpitations (hyperthyroidism), I simply embraced the fact that I also had extra energy, and got shit done, instead of going to see a doctor.  It ended up settling on its own, thankfully, because it is quite dangerous to leave it untreated.

* Assorted bits and pieces.  Things like – I can hear my heartbeat in my right ear.  Not sure what that is about.  Arthritic pain in my hand joints.  My eyesight is blurry on and off – glasses won’t help as it is irregular, and there is no cure, so I am gradually losing my eyesight.  I can not drive myself long distances any more as it is too dangerous.  I have teeth problems.  The muscles in my stomach have pulled apart, and so I look pregnant when I’m not.  I have memory problems.  I need constant air-conditioning during summer which costs a fortune, and constant heating during winter which costs a fortune.  It also means fresh air is an issue.  I am deficient in many vitamins and minerals, the worst of which is Vitamin D, followed closely by iron.  Pain medications make me tired.  I do not respond to some anaesthetics, although this symptom of EDS is not well known, even among the experts.  And lots of other “little” things.

This is what EDS feels like.  For me.

My brother has no drama’s at all that I know of, and we share the same type, whatever that type is (there is no testing available in Australia to confirm which type you are).

The disability side of things that I deal with every day isn’t my only problem.  I also have a problem with the medical profession.  It is not just me – most people with EDS have a problem with the medical profession – so much so that the community lovingly refer to themselves as zebra’s.

Problems that I have with the medical profession are relevant because it affects the choices I have and the help I receive.  For example, if someone has cancer, then they are given strong painkillers in order to deal with the pain.  Cancer, one way or another, is not a long-term condition, and so pain relief is not a long-term solution.  Long-term side-effects do not need to be as considered.  EDS has no cure, and is a life-long degenerative condition.  Long-term effects do need to be considered.  And so, doctors usually refuse adequate pain relief, preferring to have their patient in pain, rather than end up with pain-relief complications (such as low bone density, or addiction).

Low bone density is a complication of EDS with or without pain relief.  And if every person became addicted to every drug, then everyone who ever had alcohol would become an alcoholic.  The pain specialist I saw actually told me that I will become addicted to codeine as I am human and there is no getting around that.  She told me that she is recommending I take aspirin instead, and when I tried to inform her of the dangers (see link above), she said that I was wrong and that we would have to agree to disagree.

Information on the difference between addiction and dependence and why distinguishing is important.  Otherwise known as “shit that I wish pain specialists would learn about before seeing patients”.

More information.

Just over a year ago, I got the shits with health professionals assuming addiction is the worst thing in the world, and I stopped taking my pain medication cold turkey.  For three days, I couldn’t sleep, and I had restless legs among other things.  My husband ended up begging me to wean off them, but I was determined to prove I wasn’t addicted.  Physically, it was torture.  Psychologically, it was very easy.  Psychologically I didn’t even have to try – I just had to make the decision.  I abstained for three months.  It was a painful hell, but it was worth it to make the point that I do not have an addiction.

I have never displayed addictive behaviours.  Ever.  After years of taking pain medication, I still stay below my current recommended dose as prescribed.  I am not after a higher everyday dose, but rather a higher dose for those days when the pain is just too much, and the medication I have doesn’t work unless I overdose on it (which I have done a couple of times).  I would also like something stronger for those days when we would like to do something special as a family, because otherwise, I am unable to.  Long-term, high doses of pain medication simply makes me too tired.  I can push past it for a day in order to go out, but not for much more than that.  I want a life, so staying at home zonked out of my brain is not a solution.  I would simply like to have the odd day “on” so that I can have some of those experiences that other people with a disability talk about.

I also don’t expect to never be in pain.  Pain is actually a friend in one way because it lets me know when I have done too much or when I am about to move the wrong way, and this means less damage is being done to my joints.

As for shorter life span concerns in relation to long-term opioid use, personally, I would rather live thirty years of a good life on pain meds, than 50 years of a life spent on the couch in pain.  Surely that should be my choice to make?

I also find that treatment for the things that can be treated (or at least managed in a way that prevents deterioration), is not forthcoming.  I have had doctors simply refuse to believe that I could have so many problems at such a young age.  I have had doctors not know what EDS is and refuse to research it.  I have had doctors lie to me.  I have had doctors refuse to treat me (even when there was no other alternative).

If you were wondering before why I have a question mark next to my self-diagnosis of Gastroparesis, Dysautonomia, and Hashimoto’s, this is why.  It is because I can not find someone who cares enough to help me.  My symptoms are shrugged off for whatever reason.  Maybe I could be in better health, and maybe not, but certainly I wouldn’t be feeling so frustrated, or so scared about what the hell is going on.  If I know what is going on, then I can deal with it – I can’t deal with a question mark!

Disability services are another issue.  Across the board, services are scarce, however for a condition that falls through most of the cracks out there, services are even more scarce.  There is no organisation for EDS which can provide additional help to make up for the gaps, as there is with other disabilities.  So I am entirely reliant on Queensland Government Disability Services help.

I am eligible for a few programs (such as domestic support), however I am still on the waiting list for actual funding (so for now, we have to pay for it ourselves).

Other programs have had their criteria tightened, so services I may have been eligible for three years ago, I am not eligible for now.  If you know anything about people with Autism Spectrum Disorders, then you know that fairness is a big deal for us.  I hate that people who need services less than I do have them.  To be clear, I hate the situation, not the people.  I can get past this however, with the thought that shit happens.  No, the thing that annoys me far more, is that people assume that because Jane gets so much help, and I am in a worse position, then this means that I am also entitled to the same, if not more, support, and that the only reason I do not get it is that I am lazy, or like to complain.  And so, after one or two conversations, they simply stop talking to me.

The support available is different in certain areas as well, so help available on the Sunshine Coast is going to be different than the available help in Gympie, even if the two situations are identical.  Again, people tend to get frustrated because they assume that as it is a state department, then things should be equal across the state.  Things are not.  Things are not equal in any way whatsoever.

I wonder if the general public realises that in QLD you are only eligible for wheelchair funding if you need one to get around your home 100% of the time.  We have applied for one, however as I do not “always” need one to get out of bed, my physiotherapist is doubtful we will be successful.  Wheelchairs also need prescriptions.  My prescribed wheelchair is fairly basic, but still worth over $3000.  Money we will have to find elsewhere if my application is rejected.

I am also eligible for bathroom modifications.  The catch here is that I have to come up with half of the money (something I agree with, as we do not rent, and the modifications will also renovate the bathroom at the same time).  Our half is over $7500.  We applied to YoungCare for funding however they had $100k to give out and over $700k of applications, so we missed out.  I have a shower about twice a week because it is too painful to contemplate having one any more than that.  Having an open shower will allow my husband room to come in and help.  It will also allow room for a seat.  And there will be rails for safety.

There are the differences in regards to support and conditions in relation to different disabilities.  Some disabilities are entitled to certain concessions that other disabilities are not entitled to, regardless of how the disability affects an individual.  For instance, a person who is legally blind is entitled to work full-time while still receiving the full Disability Support Pension, the only disability that is allowed.  People with MS can have their GP sign off on an electricity rebate, whereas other conditions need a specialist to sign.  This is less of an issue in the city, than it is if you live rurally and your nearest specialist is ten hours away.  There are a lot of foundations and the like that help a particular type of disability.  EDS does not have such a foundation.  Aspergers does, however there is no support offered to adults.

There are also issues if the specialists in your area are all part of the same group, and they have you pegged as a drug addict because they do not know enough about your rare condition to diagnose it properly, and pegging you as an addict is better for them than admitting they have gaps in their knowledge, and then taking the time to learn about it.

What do Rheumatologists think of HMS?

• A majority believe it exists (only 7% don’t believe)

• 51% believe HMS is not a real disease (39% believe it is a real disease)

• 79%% believe that HMS is not a genetic disorder (10% believe it is a genetic disorder)

• 84% believe3 that HMS does not affect the rest of the body aside from the joint

• 57% don’t know if HMS is the same as EDS Type 3 (7% believe EDS and HMS are the same and 35% believe they are different)

• 50% believe HMS has a significant impact on the patient’s life

• 72% believe HMS has a minimal impact on the burden of societies rheumatological diseases

HMS = HyperMobility Syndrome, otherwise known as EDS Type III (3).  If EDS were a spectrum, then EDS3 would be at the lower end (generally speaking ONLY, and not to say that any given person with EDS3 doesn’t have issues greater than mine).  EDS3 is the second most well known type of EDS, with EDS IV (4), otherwise known as the vascular type, being the most well known (as it is the most deadly).  Therefore, misconceptions about the other types are even more prevalent.

In case there is any confusion:  HMS (EDS3) does exist.  It is a real disease.  It is a genetic disorder (although rarely spontaneously occurs, and is a genetic disorder from then on).  It does affect the rest of the body – any part that has collagen (in other words, all of it).  HMS is the same as EDS3.  Sometimes it does have an impact and sometimes it does not.  It depends on the individual, and even within the same family, one can die from complications quite young while another may show no signs other than being a bit more flexible than normal.  I can’t speak to the last one.

 

So, when my rheumatologist asked if I had any heart conditions (I don’t), then decided I was hypermobile, but did not have EDS, it wasn’t all that surprising.  Depressing, but not surprising.  When she thought I was a drug seeker, again, it was depressing, but not surprising.

So here I am.  Surrounded by complications that affect every inch of my life, and very little support.  Thus when people with a disability decide to speak for us all, and inform us that it is all about attitude, then I tend to get a little cranky.  Whether I leave the house or not has nothing to do with attitude.

Every time I am in pain and hide it, I am displaying a positive attitude.  Every time I meet with a friend and make a conscious effort not to complain the whole time, I am displaying a positive attitude.  Every time my kids give me a hug and it hurts like hell and I love the hug anyway, I am displaying a positive attitude.  I display a positive attitude 98% of the time.

And when I say “fuck you!” to people that go on with inspiration crap like it is the answer to everything, I am also displaying a positive attitude.  I am refusing to allow you to invalidate my experience.  By all means, speak up for disability.  Advocate as much as you wish, for whatever you wish.  If I may suggest however, by not speaking in absolutes, you allow room for experiences that are outside of your knowledge.  And you therefore do not invalidate those experiences.  The disability community generally places much emphasis on language and encourages the media especially, of being mindful of what language they use.  I think we should start doing the same ourselves.  Sometimes, talking about attitude is just a perversion of inspiration, rather than actual inspiration.

Lastly, could everyone please quit making fucking assumptions about what services are, or are not, available?  If you assume that a service is available, if you assume that the problem is with the person being lazy or ill-informed, if you assume that the person just needs to ask, or get help to ask, then you close your eyes to the stark reality that services are severely lacking, and you fail us all.

Ok, that’s it.  I’m done.   4660 words, for anyone that is interested.

About Linda

Disability consumer and activist since 2010. Mad as a hatter since way before that.

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Tagged with: The reasons why a good attitude can't change bad genetics (and all that goes with that)...
Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal