Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain

go through where they wonder if they have turned into a bit of a moaner.

Obviously a lot of us have pretty reasonable things to moan about but I am

started to get paranoid that maybe I have crossed an invisible line from

previously what was an acceptable level of moaning to an unacceptable

level of moaning, for those whose lives aren’t blighted by chronic illness.

I usually say very little about my health on social media, its like my own dirty

little secret that most days I am wracked with pain or have ptosis or feeling

anxious or whatever the hell is going on that day. When I do post it’s usually

because things are much worse than normal. I have posted a lot this summer

about my health because things have been the worst they have been for a

long time. The heat wave although helping my joint pain no end made my

PoTs symptoms absolutely horrific. Every movement kicked off palpitations,

my blood pressure was horrendously low in the 80/70 range most days.

Leaving me feeling faint and exhausted. I could barely manage to walk

some days. Many, many days were spent in bed feeling very sorry for

myself. And do you know what? I get very angry  when I feel sorry for

myself because I feel weak and vulnerable.

Regular readers will also know that my CSF Leak has come back, although

its not at the level it was in 2016 I have had several days over the last few

weeks where I have been unable to leave my bed because the pain is so

intense. It makes me want to vomit. I described the pain to someone as

feeling like both my eyeballs had been removed and dipped in acid then

rammed back in the sockets. Whilst the back of my head feels like I am being

beaten to death with a shovel. Now if you were experiencing those levels

of pain do you not think, honestly that you may mention it once or twice?

Or however many times that you want to. Because believe me when you are

dealing with that kind of pain you just don’t care what people think.

Along with the pain the CSF leak brings I have also had some additional

symptoms like vertigo that only goes away with lying flat. Losing my balance

very easily and being unable to bend down / lean forward repeatedly as this

is triggering the leak headache. As I say I am lucky it’s not as bad as it was

in 2016 but it’s bad enough.

In the last few months I have also had my migraines return, I have ended

up having to take amitriptyline every night as a migraine preventer. It’s

kind of working since taking them at the start of July I have had one

migraine. However my migraines have come back as if they are amped

up on steroids, I have to lie in a darkened room, vomiting into my bedroom

bin because I can’t get up.

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had

an intense amount of pain in my toe. It actually hurt to touch the nail.

I lifted up the side of the nail ( I had both sides removed over ten years

ago due to repeated ingrowing toenails) and the nail came off in my

hand. It hurt but it didn’t hurt anywhere near as badly as it had done

just before the nail came off.

Have I bored you yet? Because believe me I am bored with it. I feel like I

am in a never ending soap opera where shit keeps happening and I have no

control over it. So yes I may have mentioned on social media a few times

over the summer how fucking awful I am feeling and to be fair I haven’t even

touched on about 50% of the health stuff that’s been going on of late. This

is just the stuff I can think of off the top of my head.

Admitting you are sick on social media is a dangerous game, post happy

cheerful stuff and you are judged to be not as sick as you make out. Post

stuff about how fucking awful you feel and you’re moaning. You can’t win.

I don’t want my life to revolve around my health conditions but there will be

periods of time when it does because all I can do is just keep my head above

water.  To feel that I can’t express what is going on in my life, when I can go

weeks where the only person I see or talk to in the flesh is my husband, just

seems cruel. It’s not that I want someone to talk to - and thank you to all those

who have offered me a safe place to vent. It’s just sometimes even I don’t

believe what is going on health wise. I don't think I have ever been completely

honest with anyone because there is always more than one thing going on

with me. I always just give those closest to me the headline news not the

full story.

Any way that’s me, I am bored with this subject already and if I am bored

with it I have probably sent the rest of you to sleep also. Mr Myasthenia

Kid has been on holiday the last two weeks ( well just over ). It’s the longest

holiday he has taken in years. We’ve really enjoyed the time we have spent

together. We’ve managed to work on a few projects together, which I first

touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  

taking it from this - those dots on it are from dog drool

To this

Jay did the lions share of work because I am just not physically able to.

I did a small amount of painting, basically just catching the bits that he

missed. We have painted the stripped pine with hard wax oil which means

the wood is now water resistant and has a lovely finish. It took several days

to dry and for a while we were concerned that the top of the table felt very

rough. However as the hard wax oil has dried its left a silky smooth surface.

Jamie’s work also got the thumbs up from John Scott and Jo Carter on

the Sewing Quarter. I don’t think I have ever seen Jay so proud as when

they both said how lovely the table looked. I am very proud of him as it

was no mean feat sanding the table top down.

Not happy with doing  just the bedside cabinets, the lounge coffee table

on bank holiday Monday 27th August 2018 he also painted our kitchen chairs.

They look fabulous and make such a difference. And we still have paint left from

the 750ml of Scotch Mist Frenchic Furniture paint.

I also got a shout out on the Sewing Quarter Saturday 25th August -

cheers John xx

Consultant Letters

A few weeks ago I requested all my consultant letters from 2015 onwards.

I like to have copies of things as it keeps me straight, doctors are human

beings and things get missed. However I wasn’t quite prepared for the

amount of untruths, information about my health that had never been

passed onto me and test results that had needed urgent action that had

never been acted upon. I spent around 30 minutes just having a quick read

through, as you can imagine there were probably  100 of pages of information

- most of it irrelevant just showing what prescriptions I had ordered and when.

But if I found all this in 30 minutes what else is lurking in my notes that hasn’t

been acted upon, is a major untruth or I have never been told?

I want to state for the record I have no problem at all with my gp surgery,

the things i have spoken about should have been relayed to me by my

various hospital consultants. I can understand why my gp didn’t bother

telling me about the arsehole I saw in 2015 whose letter is so full of

mistruths that I wonder if it was actually my appointment he was reporting

on, my gp at the time was probably concerned for my mental health.

Although we did have an appointment quite soon after seeing this doctor

and I made my feelings about him quite clear. Usually my old gp would

rush to the defence of other medical professionals if I was voicing a

negative opinion, his silence on the matter should have alerted me to

the fact he wasn’t that impressed by this so - called - expert.

So what did I learn from this quick perusal of my consultant letters? Well

I have never been naive enough to believe that I or any patient ever receives

the same version of a letter your consultant cc’s you in on - actually tell I lie

I know one of my consultant always sends me the same version as he

never changes who it is addressed to - never me but my gp. I have seen

this in the past with the version I received from one doctor telling me that

he was going to do a trial of plasmapheresis to rule out Myasthenia Gravis,

only for me to read the letter he sent the consultant where he categorically

states I do not have MG and he thinks that all treatment for MG should be

stopped. It made me look like a liar when I tried to discuss this letter with

my local hospital consultant. At the time I was devastated by the duplicity.

Why be one thing to a patient's face and yet treat them so appallingly

behind their back? It reeks of arrogance, that they feel they are a breed

apart from their patients.

Firstly I learnt I have a fibroid on the anterior wall of my uterus. When

I attended the hospital for my trans-vaginal ultra sound in 2015, I was told

during the appointment I had an ovarian cyst of around 2cm in size on

my right ovary. I was also told that this wouldn’t be monitored as it was

under 4cm. At no point was I told I had a fibroid, this was complete news

to me.  I was shocked that at no point had anyone suggested that I the

patient be given a copy of the report after the ultrasound. Ok it’s not a

huge fibroid but surely I had the right to know? Especially when there is

no mention of an ovarian cyst.

In the same year I had a lot of bloods drawn one of the blood tests

performed was a cortisol level. It was taken at 1015am in the morning

when cortisol levels would be beginning to slowly drop away naturally.

However my cortisol level was 107, as you can see from this abstract -
https://www.ncbi.nlm.nih.gov/pubmed/12636203
a level of less that 110nmol/L shows that the patient has adrenal insufficiency.

This has the potential to be life threatening as it could indicate I have
Addison's disease. Yet nothing at all has been done about this result.

The hospital consultant that wrote to my

gp said that he would be admitting me into hospital for further testing. It never

happened. What annoyed me more was this was the doctor who accused me

of spending too much time on the internet looking up syndromes to have….

.yet my blood tests he reluctantly performed showed massively raised prolactin

levels and this cortisol level of 107. I've had low cortisol before and had further

tests in 2010  however my results then were not as low as they were in 2015.

So now I will copy the letter and go and see my gp to point out I had low

cortisol levels three years ago and possibly it would be a good idea to

get it tested again?

The winner of best work of fiction - letter from a consultant goes to an

arsehole I had to travel nearly 200 miles to see. When I met this tit I knew

he was going to be of zero use, especially when as an EDS expert he told

me that Ehlers Danlos Syndrome didn’t cause CSF Leaks. When you sat

across from someone who is supposed to be an expert in their field and

you know more than they do on a subject, that’s the time to start worrying.

Hubby and I should have left at this point - research shows that 90%

( it could be 80%) of people with a spontaneous spinal fluid leak have

a connective tissue disorder, of which EDS is one. So for this expert to

sit across the room and tell me that EDS doesn’t cause spontaneous

leaks, either meant he was ignorant of the connection between the two

- not a good look for an expert or he was just a massive bellend.

The choice is yours.

My CSF leak was diagnosed by a neurologist who has published papers

on CSF leaks, you know an actual expert on the condition. However this

doctor states in his letter to my gp that I don’t have a CSF leak and my

headache is being caused by PoTs. This is the doctor that doesn’t

believe that EDS causes spontaneous leaks and now is telling my gp

he knows more than an expert in the field of spinal fluid leaks. The sheer

arrogance of the doctor took my breath away, I was absolutely fizzing

with rage and used lots of language that I wouldn’t wrote in this blog.

However there was even better to come, he wrote that I told him I used

a wheelchair due to my headache…….yep read that again…...I told him

I used my wheelchair because of my headache…… I just laughed at that

one. My doctors know I use a wheelchair for two main reasons 1) I get drop

attacks where I will semi lose consciousness as I walk along, with no

warning. This was the main reason why I had to stop walking my

dogs unaccompanied as I had no clue as to where or when I would pass

out. I could be mid-sentence and I would hit the deck. 2) I also use my

wheelchair because of the various issues I have with my spine and

other joints. Walking causes me intense pain, bursitis will flare up in

both my hips, I get plantar fasciitis in both feet. Walking any kind of

distance is just too painful. I can categorically state that I NEVER SAID

I used a wheelchair because of my CSF leak. Because when I started

using a wheelchair in 2008 I didn’t have a csf leak. I started using my

chair to prevent head injuries from my drop attacks and to allow me to

get out and go further than just walking would allow.

Now if that had been all the lies / mistruths he had told then I could

possibly live with that but his letter was just one lie after another.

He claimed I was resistant to coming off opioids despite the fact they

don't work on my pain. His main concern during the whole appointment

was to get me off opiates but could offer me nothing in return to kill the

pain. I have never said opiates don’t work, I wouldn’t bother taking them

if they didn’t work. Opiates were the only medication that reduced my pain

enough for me to be able to get out of bed after being bed bound through

pain for 12 weeks. Thankfully the gp who this letter went to was the doctor

who prescribed me morphine and when I discussed this attitude of the

consultant that I had to come off morphine, my gp said no way, there is

nothing to give you as an alternate. He said I saw what you were like

before morphine, I couldn’t do that to you.

Oh and there is more that this cockwomble of a doctor wrote, he said I

was resistant like most EDS patients to getting better………………….

I’ll let that sink in. Someone at this National Unit thinks that EDS

patients don’t want to get better. Now it really doesn’t surprise me

as this hospital also uses the Lightning Treatment on pediatric patients

with M.E. If they are arrogant enough to believe that they can cure M.E

using this bogus treatment no wonder they believe ( or should I say this

one doctor believes) that EDS patients can think themselves better.

All the doctors that have ever treated me have said what a positive mental

attitude I have towards my medical conditions. That I persevere no matter

how hard things get. That I can still laugh and make fun of myself when

things are truly awful. So to declare in this letter that I was resistant to

getting better from a genetic medical condition that has no cure is

simply laughable. No wonder the hospital consultant that referred me

to this hospital said he wouldn’t waste the hospital trusts money again

sending any future patients there.  He couldn’t apologise enough and at

that stage he knew I hadn’t seen the gp’s version of the letter, he probably

thought I never would.

I would suggest to all patients that they ask for all copies of their consultants

letters going back three years. Some surgeries will charge you a fee for this,

I was very lucky and didn’t get charged even though I was expecting it.

You will have to fill out a load of information as to why you want the

information and you'll need to provide a form of ID. They can refuse to

give you these letters using the get out clause of it being detrimental

to your mental health. Using the same get out of jail free card they

can omit some letters from what they give you. If you have complex

health issues it is essential that you have these letters and read them.

If you find that tests haven’t been chased up or performed you can

advocate for yourself. When you have lots of conditions / consultants

it is very easy for things to get lost or lose their priority. At least this

way you can be an extra set of eyes and see if things have been

missed and bring them up with your consultants or your gp.