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

Octreotide trial, the results!

On Monday 14th April I made the call that I had been a little apprehensive to make, I rang the ward to see if there was a bed available for my octreotide trial. The answer was a resounding yes and then the nerves kicked in big time, up until then I had been relatively calm.

The disasters of my stay will be fodder for a future blog post (s) when I feel less like I've had a bus and then several cars run over me. However for those of you interested in the results I thought I would do a quick update today (Wednesday 16th April) ready to be published on  Thursday 17th April 2014.

I managed to get home a little after 24 hours on the ward and by this point I had tolerated three injections of 25mcg, one of which I had done myself. The injections are subcutaneous so theres no finding a vein which would be a complete disaster for me. If a hospital phlebotomist has problems and they take blood all day everyday theres no hope for an amateur like me!

The injections need to be done in conjunction with a meal as my symptoms are at their worst in the two hours after I eat. The first injection stung a little, the needle going in doesn't hurt its the octreotide going in that does. However I've had some great advice from fellow users courtesy of facebook and know that it is best to get the dose up to room temperature before injecting it.

With the first injection given to me on Monday evening, I still had a little episode after eating where I went to sleep and then woke up confused thinking I was back at my parents house in a completely different city. The confusion didn't last long and I came out of it pretty quickly.

My second injection took place at around 7am on Tuesday morning and I had a few slices of toast to see how my body coped with another carbohydrate heavy meal ( it really doesn't matter what I eat, protein or carbs I will crash all the same but carbs are the worst). After 45 minutes I had some tachycardia but it wasn't as forceful as normal (by forceful I mean it didn't feel like my heart was trying to break out of my chest. That's how it normally feels after I've eaten) I did have a little sleep of 20 minutes but I had, had such an awful nights sleep that at some point during the day a nap would have been called for.

At around 930am my consultant popped in to find out how I was doing. I really don't like being in hospital and the usual confident young(ish) woman that he has got to know over the last few years had vanished. Before him was a quivering wreck that was close to tears with the stress of it all. Hospitals / doctors / anything remotely medical makes me extremely anxious these days due to horrific past experiences, so I think he was genuinely shocked at the state I was in. Having told me the day before that I was going to be kept in all week and I had managed to bargain him down to Wednesday morning, he decided that I could go home later on that day provided I suffered no side effects from lunch times injection and that I did the injection myself!

At around 13:30 I did my very first injection, having been talked through it by the nurse. All went well until she forgot to tell me that the skin that I had pinched to put the injection in, had to be let go of before removing the needle - otherwise what you have injected oozes out! I haven't made that mistake again!

I've suffered no  hideous side effects from the octreotide. All I have experienced so far is a strange metallic / salty taste around 20 minutes after injecting, a strange burning feeling in my mouth and throat, a minuscule amount of nausea and an empty feeling in my stomach. None of these symptoms are so dire that it would want to make me discontinue the medication.

Even on the tiny dose that I have taken there have been improvements. Today I've had no tachycardia after eating, on checking my blood pressure it was a healthy 115/80 with a pulse of 68. I never have a normal blood pressure unless I am in a lot of pain or I am incredibly stressed and my pulse never goes below 80 beats per minute. It usually resides in the 90 -100 zone, so a low pulse rate is incredible. I also took a shower whilst the octreotide was still in my system ( it leaves the body after 90 minutes) and I had no blood pooling in my legs. Normally when I shower they are a livid pulsating purple colour and at the same time my internal organs feel like they are falling out of my body onto the shower tray beneath me.

However I need to stress this isn't a cure, for want of a better word my autonomic nervous system is screwed and my condition is worsening. I will only improve whilst the drug is active in my system. There is a slow release injectable version of this drug but I am in the trial phase at the moment and that won't be considered until my consultant and I are sure that the drug is improving my condition.

As soon as the drug wears off my heart rate soars and my blood pressure plummets. For the 90 minutes whilst its working, so far I haven't noticed any change in energy levels but then I have a hospital visit to get over! So the injection currently improves my post prandial hypotension and tachycardia for 90 minutes three times a day. The rest of the time I still have tachycardia, orthostatic intolerance and painful joints due to the Ehlers Danlos Syndrome.

I know that this is a much shorter post than normal for me but I am exhausted!

This is the "sharps bin" and pack of syringes I have taken home with me! The bin is enormous and we are now trying to work out storage solutions for all my syringes so the house doesn't look quite so goulish! I am thinking about getting some nice fabric and making a drawstring type bag to cover the outside of the sharps bin!

Palpitations, arrhythmia - heart stuff!

Since my nose dive early February I have been experiencing the worst palpitations I've ever had. I have the feeling of my heart pounding for hours on end, before the nose dive it was just a few minutes numerous times a day particularly on exertion. Its new to me and new is scary especially when I've been told I have an arrhythmia.

The arrhythmia was discovered during the tilt table test last month. I listened to my consultant as he stroked his beard and said over and over again "wow, I've never seen this before". When I asked him what he was referring to he said during the tilt my heart never sustained a rhythm but went all over the place and my blood pressure never steadied. It dropped and rose all over the shop. It didn't seem that surprising to me as I've witnessed it on hospital equipment and my own medical equipment. I actually went into hospital due to the weird heart rhythm in May 2011. As it was a bank holiday and my condition wasn't acute they decided to release me with a promise of a follow up to a cardiologist something that never happened.

Bank holidays are never a great time to be admitted into a UK hospital as their are fewer nursing staff and even fewer drs. The Dr that saw me admitted he had spent 30 minutes googling my condition before he came to see me. I really hate the fact this is a rare condition and most drs course of action is to just leave it alone or wait and see. That's because both of these approaches do nothing to help me. Hence my reticence now of going to hospital when things get rough.

A worrying development on the palpitation front is the new style ones, which can only be described thus, I feel like there is a balloon expanding in my chest the feeling goes up into my throat and then makes me cough several times. I will be honest I've had these in the past too, mainly when stressed out. However these are also happening several times a day. Although they take seconds to end they leave me feeling dizzy, fatigued and with a horrible ache in my chest. I think I need to call my gp about this on Monday and let him freak out about these as well.

I just wondered if any of my readers had also come across these horrid little things as well? I would be most I interested to hear if any of you have. I will of course update you on any progress I make towards seeing a cardiologist.

 Presently my gp is waiting for me to have the drug trial in April before referring me to see the cardiologist, those in the UK will know that what he's actually waiting for is the change in the financial year now that the budgets have been handed over to the gp's.  A good gp he maybe but budgets are tight and its not currently considered an emergency. Things may change after Mondays phone call!