The Dentist… not an experience I wish to repeat

As regular readers will know last Friday I had the dentist for a tooth extraction. It wasn’t a very pleasant experience and for that reason I am stating now

if you are fearful of the dentist or have a dental phobia please skip this week’s blog post.

I would hate for anyone to read this and then never go to the dentist again. So I am warning you it wasn’t pretty but there were some humorous bits as well.

I had been pretty wound up about this trip to the dentist from the Tuesday of the week before. Granted I asked for the extraction as I couldn’t stand the thought of having to listen to the drill going and the fear that at any moment the local anaesthetic will have worn off and I will be able to feel everything. The night before the appointment I decided that I would take 5mg of diazepam to ensure I slept. Fear of any kind of medical appointments can leave me struggling to sleep for up to a week prior. Thankfully I had been able to sleep over the previous 9 nights, as we were sorting stuff out due to the car. I slept well but woke up with my usual Diazepam hangover I get when I take the full dose. Of late I have been cutting them in half as they work just as well when I am struggling to sleep.

My appointment was for 9.35am, as we now get up ridiculously early due to Dembe ( although saying that he slept until 6.10am this morning had his breakfast and then slept until 8am – unheard of and what a luxury!) it felt like it was hours away. At 8.45am I took 5mg of Diazepam, now I never take Diazepam during the day, maybe in the evening when my back is in spasm and I would never take the full dose of 5mg. I also took some oramorph so it was in my system and would hopefully help with the pain. By the time we were travelling to the Dentist surgery at 9.20am I was off my face! 

I actually felt like I had drunk several gin and tonics on an empty stomach. My face was numb and all I wanted to do was go to sleep. Jay dropped me off, I prefer doing the dentist alone as then I don’t have to pretend to be brave to an audience. He was going to take Dembe to the beach. I checked myself in and made my way to the waiting room. Eternally grateful it was on the ground floor as by now there was no way I was ever going to manage to do steps by this point. Putting one foot in front of the other without falling over was enough of a challenge. Thankfully the waiting room was empty and I wasn’t going to have to pretend I wasn’t off my face. It was like one of those situations where you are having pretend you are sober and the harder you try the drunker you look.

It was just as well the Diazepam had rendered me incapable of doing much at all because I was late going in for my appointment. around 30 minutes. At any other time where I hadn’t taken Diazepam I would have just run away claiming a prior engagement for not being able to hang around. By the time I got into the consulting room I was floating, I knew I was at the Dentist but I didn’t really give a shit, which is the complete opposite of how I normally am.

As I walked in the Dentist asked me how I was, I laughed and said ” I’m floating” he looked a little confused so I reminded him that he gad previously advised me to take Diazepam for any interventions he was going to carry out. He started laughing, normally I am so uptight I can barely speak. I wasn’t looking forward to the procedure but the overwhelming sense of fear and need to get the hell out of there had gone.

I reminded him – god knows how that I really didn’t need any detail during the procedure, just a high level overview at all times. It is the detail that makes my fear spiral out of control. 

Now my memory of events is a little hazy, I am having to look back at stuff I wrote on social media whilst still under the influence to remember exactly what happened. I know it was horrific and I am still in pain. My gum where the tooth was removed is black and blue and I have only been able to eat solid food from last night 4 days after the extraction. I do remember being rather amusing although it may have been only me that was amused.

Initially my Dentist had a look at my tooth again. I know that he said that it had disintegrated further from just over a week ago. I do have a terrible habit of unconsciously clenching my teeth when stressed and obviously over the last week with having to find a new car and this appointment looming I had probably been clenching more than normal. The tooth to give you a basic idea is on the right upper jaw at the back 7 I believe is its number. It was filled a very long time ago, due to EDS my teeth have narrow fissures which mean they are much more prone to needing filled. Had anyone realised I had EDS as a child they would have sealed all my adult teeth as they came through to prevent caries ( decayed areas). Instead now I am left with teeth that are rapidly losing their enamel and are more filling than tooth. Anyway I digress, the tooth being removed just to complicate things had also fractured. So I one side of the tooth stood the filling and on the other sat the really crappy tooth.

The dentist then gave me two injections one either side of the tooth. The one on the outside of the gum wasn’t too bad but the one on the inside of my gum near the roof of my mouth really stung. Whilst he was waiting for the local anaesthetic to take effect he then did a quick clean of my teeth. I had to stop him once as it was sore, on my bottom jaw at the front but I can see how much better they are looking for it. Of course on the side where he had done the injection he could do whatever he wanted as I could no longer feel anything. As he knew he would have a limited time in which to work as I tend to burn through local really quickly, as soon as I was numb he set to work.

This was really weird, the dentist moved the chair really high up, so I was face to face with him and I was sat bolt up right. I closed my eyes at this point as I find it really uncomfortable staring into someones face whilst they try to rip your tooth from the gum. I have no idea what kind of implement he was using, I am guessing some kind of pliers, as I could feel the end of them against my lower lip. As he was pulling away the pressure was immense. I felt like my cheekbone was going to shatter and my TM ( temporomandibular joint – the hinge joint of your jaw either side of your face in front of your ears) was going to dislocate. I put up with it for so long and then I grabbed his arm and explained that the TM joint was moving beyond a normal range of motion and felt like it was being pushed to the point of dislocation. Let alone the feeling of pressure in my cheek bone. He wasn’t impressed and said “you are going to feel some pressure” I responded that I understood that but I was very aware of the fact that it wasn’t going to take much more for the joint to pop. Reluctantly I agreed that he could continue. He started up again and it was really quite clear that this approach wasn’t going to work. My tooth was claiming squatters rights and a different approach was needed.

As my tooth was quite fragile due to the fracture in it he decided to put a band around it to try and maintain its integrity and to stop it fracturing into tiny pieces. It didn’t work as although all I could feel was pressure there was the sound of a tooth exploding and a wedge of tooth dropped into the back of my throat. I tapped his arm for him to allow me to sit up and then I spat out what had dropped into the back of my throat. It was a chunk of the filling and a piece of tooth. What shocked me though was the sheer amount of blood, the dental nurse had done a good job using the suction device as I hadn’t tasted or felt any blood at all. I had however missed the sink bit when spitting and the dentists pristine white unit and floor now resembled a bare knuckle boxing ring. I apologised profusely for making such a mess. I then grabbed another piece of tooth out of my mouth and loudly declared “the tooth fairy isn’t going to accept this shit is she?” to which both the dentist and the dental nurse laughed. Probably more at the fact the longer I was in the chair the more drunk I was sounding.

As the tooth had disintegrated in my mouth the dentist decided he was divide up the rest of the tooth and remove it piece by piece. This meant the use of the dreaded drill. I started shaking a lot and I had zero control over it. The dentist asked me if I was ok but as he had his hand in my moth at the time I could only make a weird sort of noise that was accepted as a yes. The smell was disgusting, a weird burning smell. I spent the whole time gripping the armrests praying that the local anaesthetic was going to hold. I knew that this deep into the tooth there was a high chance if it was to wear off it would be like a scene from Marathon Man.

More moves with the pliers and more blood. I was starting to swallow it now, which was making me feel sick and slowly the tooth  came out in pieces but it was only the tooth that was visible above the gum line. The roots themselves were refusing to budge. The shakes were getting worse, at about this point I was lying there thinking I wish I had just had the bloody crown done. I had innocently assumed that the tooth would pop out without issue and now 20 minutes in we were looking at playing a game of dig out the roots. My heart rate well that must have been close to the 200’s. I was shaking like I was plugged into the electric mains. My heart sank when he informed me he was going to have to dissect the root in my gum using the drill. Again the fear was that the local anaesthetic would have worn off and I was going to be in pain.

I have to say at this point my dentist was really good. Every time he went to use the drill before touching me he would blow cold air onto the area he was going to work on to check it was still numb before he started. It wasn’t until it was all over and I was sat up talking to him that I clocked that he had a syringe primed with extra local anaesthetic in case it had been needed. I finally felt that after all this time he was listening to me.

I tried really hard to get the shakes under control but there was nothing I could do. The taste of blood the smell of the roots of the tooth being  broken up into pieces. I heard him ask the nurse for the root forceps or something similar. I had to ask to sit up again as whilst the nurse had been getting the tool for him a whole load of blood and bits of root / tooth was sat on the back of my throat choking me. Again I was a little taken back at the amount of blood. I know it was mixed with saliva but the blood was really bright red and thick, so was probably 90% blood and 10% saliva. I really didn’t fancy my prospects of being able to get off the dentists chair without fainting.

By the time it was over I had been in the dentists chair for over 35 minutes. I still couldn’t stop shaking. The dentist showed me the root’s of the tooth he had removed it was over an inch long no wonder the fucking thing hadn’t wanted to come out. It had also been twisted around the other side the root. Still under the influence of Diazepam I said “that’s a fucking monster” I do try to limit my profanity when in polite company but it felt right in the moment. It also noticed there was blood all over the instrument tray and all over his gloves. It is a good job that I don’t faint at the sight of blood.

I have to say this was the most violent and traumatic tooth extraction I have ever gone through. At the end of the procedure the Dentist told me that at one point he thought he was going to have to send me to hospital as he didn’t think he was going to be able to get the roots out. I am not surprised because I think I went into shock during it and that was what was causing me to shake so violently. Plus the sight of all that blood, repeatedly.

At the time of talking to the dentist I was clamping down on the gauze they give you to apply pressure to the wound. After five minutes he checked that it had stopped bleeding which it had but he gave me a spare gauze to take home. Just as well because 10 minutes after being home my mouth was full of blood and I then had to sit for 40 minutes with the gauze clamped against the extraction site to stop the bleeding. When I finally removed it, it was soaked all the way through.

The pain really started to kick in a few hours after I had got back home and my face started to swell. It took every pain medication in the house taken at regular intervals to get the pain under control. My TMJ also flared up with pain so moving my jaw was incredibly painful. For the next few days I was washing my mouth out with salt water every 2 hours. I felt so sick for hours afterwards due to the amount of blood I had swallowed during the course of the surgery. Its not an experience I want to repeat and I think I maybe referred to hospital for the wisdom tooth to be extracted after that debacle.

Its now Wednesday and I am still in pain at the extraction site. The pain hasn’t got any worse and it is localised just at the site rather than what it was like on Friday where the whole right side of my face hurt. I think due to the EDS it is going to take longer to heal. If it hasn’t settled down by next Monday I will give the Dentist’s surgery a ring as it would have been well over a week since the tooth was removed. I have had a quick look inside my mouth and there is quite a bit of bruising so I imagine that is contributing to the pain.

The good news is that on the same day of the tooth extraction Jay picked up our new 2nd hand car. I didn’t get to go out in it until Saturday but it is lovely and very comfortable. Dembe has given it his seal of approval and covered it in long yellow hair!

***

About an hour after I finished writing this post my mouth really began to hurt. It was hurting all along my cheek bone, up into my eye and nothing was touching it. I waited until 11.50am to ring the dentist as I was wondering if it was psychosomatic but as the pain was increasing I knew it wasn’t. Finally the dentist surgery rang me at 14.30 after I had rung them again just before 2pm to find out why I hadn’t heard from them – the pain was increasing and I just wanted there to be an end in sight. They asked me to come straight down.

Even thought this was an emergency appointment I was seen straight away by a different dentist than my own. He confirmed that the blood clot had been lost from the extraction site and that bone and nerves were now exposed. He had to give it a good clean out with cold water and then picked out all the food debris that had got in it. He said it was showing no signs of infection but he took an x-ray and they will contact me if they find anything. 

The extraction site has now been packed with iodine gauze – which tastes grim but has reduced the pain I was in enormously. I have got to try to keep it in situ for the next few days. Then resume the hot salty water rinsing. 

I knew this morning when I woke up feeling exceptionally tired and rough that something wasn’t right but just couldn’t put my finger on it. So glad that I have been, the only time in my life I was happy to visit the dentist!

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Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

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 it’s 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.

 

 

 

My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

CBD Life product review

As you know I rarely do product reviews due to the fact I think many bloggers don’t inform their readers that they are being paid to promote products. I receive no free products or money when I do a review. The products ( and there have been only a handful in the 10 years I have been blogging) I have reviewed have always been purchased by me and today the product I will be talking about was bought by me and I have no links to the company, nor have I received any money / financial incentive for this product review.

 

I follow quite a few chronically ill bloggers on various social media platforms. I pay close attention to those that have EDS because quite often they will tell you something about a product be it a brace, crutches or pain relief that you didn’t know. I was very interested when one of them said that she had been using the CBDLife products – their website can be found here  with good results. https://Cbdlifeuk.com/cbd-products/

 

I have tried cannabis oil before ( the legal stuff before anyone gets animated) but it did nothing for me other than taste absolutely foul. I had the stuff you had to drop under your tongue from a well-known national health food store It was disgusting stuff green and slimy. I think I managed to take it for a few days before I gave up. I was having to eat a teaspoon of sugar to get the grease and taste out of my mouth. From that bad experience I wrote off cannabis oil as a mad fad and nothing more. Until a friend of mine started talking about her experience of using products from CBDLife.

 

After being in excruciating pain for a few days and ever-increasing amounts of morphine not touching it I decided to take the plunge. If it didn’t work it was an expensive mistake but at this point anything was worth a go. I decided to choose the vaping method, which meant I would have to taste the stuff. Plus the blurb on the website says that the vape gets it into your system much quicker than any other route. I was a little worried about the vape as those of you who have followed my blog for a while will know I gave up smoking on 6th August 2017. I used a vape initially to help me quit for the first three weeks and then stopped using that. I haven’t smoked since. I was worried that the vape may trigger the desire to smoke but thankfully it hasn’t.

 

My vape arrived the day after I ordered it which is fab customer service. The only downside with the site, I feel is that you can only pay by credit card, bank transfer or bitcoin. I ended up paying by credit card as I felt I had a bit more protection. My vape arrived in this snazzy little case

 

 

Inside the case you have the cartridge containing cannabis oil, a USB connector to charge the vape and the vape part.

 

 

It all goes together very easily, it just simply screws together.

 

 

Now as I said earlier I had a shit experience with cannabis oil in the past and it did nothing for me. This vape contains a much stronger cannabis oil, as you can see from the sites blurb

 

https://cbdlifeuk.com/cbd-products/cbdlife-purepen-200mg/

 

I started using it as soon as it arrived. Initially the vape made me cough my guts up! I had the same issue when I stopped smoking and started using a vape. However with a couple of goes I got the hang of it. Now just to make this clear this cannabis oil is the completely legal stuff in the UK. I don’t get high or giggly or hungry taking it. Saturday night was the first time I noticed a difference, I slept the whole night through. That hasn’t happened in years, at least 10 years. No waking up in a blind panic, no waking up in pain. That really threw me and I just assumed it was a fluke.

 

However a few days later after using the vape 3 to 5 times a day, I realised that I hadn’t touched my oramorph ( liquid morphine) at all. I had a brand new bottle of it in my medicine cabinet and just hadn’t opened it. Now in all the time I have been taking oramorph that has never happened. Some days I am taking it every 4 hours to attempt to get my pain under control. I was in shock.

 

I was also sleeping all the way through the night and I was feeling much less anxious than I normally would. As I said earlier I haven’t slept through the night in years, it just never happens it doesn’t matter how tired I am, I will wake up between midnight / 1am and then I am awake until 3am / 4am. I have been like this for years no matter what medication the doctors give me to help me sleep.

 

I have been so impressed by the results of using the vape that I have dropped my slow release morphine at night from 30mg to 20mg. Again in all the years I have been taking morphine the dosage has only ever gone up never down.

 

During the last two weeks I have barely had to use a hot water bottle for back pain. I have had one bad day ( day 9) where I ended up using oramorph twice as my back was playing up and I also had some bowel adhesion pain.

 

I saw my gp last week when I was five days in using the vape and she was amazed at what I was telling her. I said this maybe the placebo effect but like she said who cares what it is if you are in so much less pain that you are able to reduce your morphine dosage. And do you know what she is right.

The type of pain I suffer from is muscle spasms, nerve pain, joint pain, basically every type of pain. It hasn’t got rid of my pain completely but then nothing ever has but it has helped massively with muscle spasms – which had me in agony every night. Even my feet have stopped going into spasm and that has never happened.

 

Overall I am incredibly impressed with this product, so much so that I bought an extra cartridge for it to ensure that I don’t run out….ever. If you suffer a great deal of pain / chronic pain it is certainly something to think about.

Quick list of improvements

Sleeping through the night for the first time in years

Not waking up in pain

Only needed to use a hot water bottle twice in last two weeks for back pain

Reduced my night time dosage of morphine by 10mg

Have used oramorph twice in just under 14 days

Muscle spasms have stopped (feet and back did it daily)

Less anxious

Feel calmer and happier

A trip of a lifetime

 

Next week hubby and I will be visiting the Emma Bridgewater Pottery factory. It’s a trip that we decided to take around two months ago. We never thought we would get to visit it so soon. We always had thought we would have to wait for a few years before we made the trip as we would “have” to do it over two days but we decided to bite the bullet and just do it in one. It will probably leave me quite sick, there may not be a blog post next week, if the exertion hits me really hard. However I am determined to enjoy myself and live with the consequences.

 

 

A trip even for an able-bodied person can involve lots of planning, as the whole thing has seemed rather surreal to me I hadn’t really started thinking about the trip and the reality of it until yesterday. Now my lists have lists. I did order a road atlas as we are old school and don’t use a sat nav. Our road atlas was invaluable on a trip many years ago when we were on our way back from a family christening in Norfolk and the M25 was closed. I took on the navigating responsibilities and got us to the M4 by going the scenic route rather than sitting for hours in a huge tailback. Also last week I finally printed off the directions from the AA Route Planner – both there and back (I have made that mistake before!) The tickets have also been organised and placed in a folder. But that is just the tip of the iceberg of stuff that needs to be done.

 

 

Due to the sheer volume of medications I take, I have had to try to come up with a working solution of taking extra meds with me just in case I need them. I really didn’t want to be lugging around a full-size 300ml bottle of morphine when I may in the course of the day take only 20ml. Same as I don’t want to be taking 200 paracetamol or a blister pack of ten slow release morphine tablets. My handbag will resemble a pharmacy if I am forced to take all these things, I already have a print out of all my prescription medications which I carry at all times. It really is a pain in the arse having to be so thoroughly bloody responsible but the consequences would be awful if these things weren’t properly managed. Not keeping on top of my pain medications means I can be in agony for 48 hours until the situation is back under control. Even when I am having a good time I can’t forget my pain meds as further down the line I will be jolted back into reality with searing joint pain.

 

 

The anxiety levels planning for this trip has induced are off the charts. I am an anxious person by nature but it had been under control for many years just raising its ugly head anytime I was more stressed than normal. Since giving up smoking though my day-to-day anxiety levels have increased. Anything and everything is setting me off, even the most basic things can leave me doubting myself or working out the worst case scenario of every situation, what I call catastrophizing. However unlikely the catastrophe maybe likely to happen. It’s a horrible way to live as it makes you so desperately unhappy. You spend your whole life ignoring the here and now, worrying yourself sick about the future, something which you have zero control over. It literally sucks the joy from any situation. So even though the anxiety about this trip is causing me sleepless nights I am determined to go, to prove to myself that I can live in the moment and enjoy myself. If my anxiety levels don’t settle down after this trip I am going to have to make an appointment to see my gp as this level of anxiety isn’t normal. It’s not my normal.

 

 

With 7 days to go until my trip ( it will be less again by the time this is published)  my lists have lists. Writing lists does seem to soothe my anxiety until 1am when I wake up most nights in a panic about something or other. Thanks to the Lush Sleepy lotion which I blogged about here , I am getting off to sleep much more easily. It is just staying asleep that seems to be the problem. At least now, well during the day I will have a list I can check and re-check, to ensure I have planned for every possible outcome. When my mind is occupied with writing, crafting etc it is easy to feel calm and in control. The waking up in the middle of the night is just frustrating because that is now actually starting to make me ill, due to the lack of sleep. I am now panicking about not sleeping properly the night before we go…….how bloody stupid is this? If I keep worrying about it, it will become a self-fulfilling prophecy. Thank god I can function on the minimum amount of sleep and I think the adrenaline alone will keep me going for this trip next week.

 

 

Next week is going to be quite hectic with our trip to Stoke-on-Trent and both of our birthdays. So if there is no blog post next week you will know why, it’s because I am utterly exhausted. I will try to get something out even if it is just a photograph from the day but I won’t be pushing myself. I am sure you will understand as I will be recovering from my trip of a lifetime.