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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Adulting

Well it seems that the universe isn’t done with fraying my nerves. 24 hours after last week’s blog pots was published we found out that our car was in need of some expensive repairs. The repairs were going to cost more than the car was worth – just the cambelt change we had been advised would cost us £400 with the best case scenario. On top of that we needed to get the mid section of the exhaust repaired as Jay had gone over a stick or stone and that had removed the exhaust from its mountings. It is at times like this I really can’t abide this adulting shit. I wish sometimes that someone else would swoop in and fix it all but then that would mean I wasn’t an adult at all. At 45 I need to realise the days of someone swooping in have long gone.

Being nervous about my tooth extraction went out the window. Instead Jay and I had come to the realisation that as much as we loved the car we have that this was probably a slide into it becoming a money pit. With one of the hospital consultants I see an hours drive away we need a reliable car. Other than trips to the hospital we do very little mileage. But I can’t be sat at the side of the road waiting for the breakdown service. 

I did a quick search online – this has been how I have found the last two cars. I thought I had found something ideal a silver Peugeot 207 Estate. It looked in good nick, nothing on there was screaming out to me. So rang the garage and this is where its gets bizarre. This garage was advertising on several well known sites yet when the phone was answered it was answered with just a “hello” not a “Hello XXX garage”. Initially I thought I had dialled the wrong number, so I asked if I had rung the garage, to which there was a bit of a pause and the guy at the end of the phone said yes. I then proceeded to ask him if the car was still for sale and if it had a recent cambelt change, full service history. The answer I got was yes the car was still for sale but he didn’t know about the cambelt or where the paperwork for the car was. The bloke sounded strange but I put it down to maybe he just wasn’t the full shilling. I should have taken a breath and realised how dodgy this all sounded. I mean a garage who answer the phone without telling you the name of the business, a car for sale ( and they only had 4 advertised on all the sites) and he didn’t know where the paperwork was. However I was stressed, I wasn’t thinking straight and we needed a car. Jay was dispatched by Taxi to the garage.

Whilst Jay was on route something was nagging at me about the car – my brain had finally engaged. So I did a background check on the cars history. Its cost me 50p and I could look up 5 different cars should I want to. What I found out concerned me, the car had not been on the road since 2017 ( which would mean an 8 year old car in 2017 hadn’t been able to be sold). It had failed its 2017 MOT and the list of fails and advisories were shocking. Ok I admit I had to google what half of them meant but even I knew a sub-frame failure wasn’t good. I messaged Jay and told him to come back. He messaged me back saying they hadn’t been able to find the garage – another bizarre thing, as the guy on the phone had told me the full address was on the website. However Google Maps had never heard of this garage. Thirty quid lighter and very stressed Jay got home with a migraine. He had to sit outside in the cold for a while, whilst I got him some pain killers and anti-sickness medication. He really did look rough.

So back to the computer I went, our options were being dictated by what was nearby and what boot size the car was as I have a mobility scooter and a wheelchair that I need to be able to put in the back. Most cars other than estates and people carriers just don’t have that kind of space. Just when I was about to cry with frustration I discovered a small garage 12 miles away that had a Renault Grande Scenic for sale, this was the next model up from what we currently drive so we knew the boot space was going to be ideal. I showed Jay the photos and I then rang the garage. This time I was told the name of the place I was ringing, which was a good sign! I then had a chat about the car and asked if the cambelt had been changed. The guy said no but it would be changed before we bought it. 

I did another background check it was 22 days without an MOT and probably about the same for car tax. I looked through its MOT history it had passed it’s last MOT with no advisories ( for those of you in the USA etc who are unfamiliar with the UK system cars have to be checked every year by a garage after they are 3 years old. This is to check it is safe and its emissions are compliant with the law. Advisories are things the garage notes that tells you although it didn’t fail the MOT on those points they will need repairs before your next MOT.) It had failed MOT’s in the past but all the work needed to ensure it passed and all the advisories had also been addressed. 

The problem was we had been advised that our Cambelt could go at any moment and we were only using the car now for essential travel. Where we needed to go was out in farming country and was down tiny single track roads. Should the Cambelt go out there we would effectively be up a certain creek without a certain paddle. Thankfully my parents had text me to let me know that they were up at their caravan ( about 3 miles away from us) so I rang them and explained the problem. They came to the rescue with my dad taking us over to the garage to have a look at the car. We took Dembe with us and he was such a good boy, as he isn’t brilliant in the car as he can whine a bit but he barely made a sound.

As we pulled up the the garage I could see that the owner had pulled the car out onto the tiny forecourt for us. Believe me I have travelled an hour to see a car at a garage in the past and found it at the back of the lot hemmed in by other cars despite them knowing we wanted a test drive! So that was another tick in the box. We had a look at the car, it was perfect for us. The boot was enormous and technically it is a 7 seater as there are two folded down seats ( completely flat ) in the boot. The car is big enough to take Dembe’s crate and my mobility scooter un-assembled. My mobility scooter comes apart so it can fit in the boot of a car. 

As we were happy with the car the deposit was paid and now we play the waiting game. The car needs an MOT and whatever work needs done for it to pass, if it needs any. It will be having a full service, the cambelt changed and the rear drivers side passenger window fixed. It’s an electric window which isn’t working, not that we open the rear windows with Dembe in the back. 

I am now going stir crazy as although Jay is still using our current car to take Dembe up to the common for his walks, I am not going with him as if the car breaks down I can’t walk home. I don’t have the ability or strength to walk should that happen. So I am currently going stir crazy as I haven’t left the house since Friday afternoon. Normally I go out of the house in the car about 5 times a week. That drive out onto the common, even though I just sit in the car, keeps me sane. It gives me something different to look at. I am at the point now where I just can’t wait to get outside. Of course this week I had a load of appointments my hospital appointment was booked for tomorrow so that has been cancelled. I was supposed to be at physio today but again its been cancelled due to not wanting to drive the car that far. The only appointment that is still going ahead as planned is my dentist appointment Friday for my tooth extraction. If we don’t have our new ( 2nd hand car) here by then I will take a taxi. 

Whilst sorting out the replacement car I ignored the fact that I had a UTI brewing, which caused me loads of pain over the weekend and I am only just feeling back to normal now. Thankfully I already had antibiotics in the house so as soon as I realised it wasn’t just an irritated bladder I started taking them. So Saturday afternoon I ended up having to go to bed as I felt so ill.

So we are on the countdown now to getting the car, I just can’t wait to get outside and see something other than my home and the garden!

what’s a cambelt?

Sh*t

My fear of the dentist has become sort of legendary on the pages of this blog. It’s now no longer a fear `but has evolved into a phobia, which would be fine were it not for the fact that I can see in my future lots of dental work being needed. Which fills me with dread.

The phobia really took hold last year, I was sat in the waiting room and I could hear the sound of a dentists drill going in one of the consultation rooms. As I heard the drill sick reached the back of my throat and I started to sweat. I felt incredibly light headed and I had to fight the urge of just getting the hell out of there…if indeed my legs would have worked. 

I have never had a very good relationship with dentistry. I have a high pain threshold everywhere apart from my mouth. I am incredibly sensitive even a dentists tool checking my teeth can trigger sharp nerve pain. I often wonder if I have more nerves in my gob than the average human being? I also wonder if it is because you are so vulnerable lying their unable to move or communicate effectively that my fear or phobia has now taken grip. Pain happens at every dentist visit, even check ups. My reaction gets the same response from whatever dentist I see, they simply don’t believe that their action has caused me pain or discomfort. To be constantly told that your pain isn’t real by the people who you are supposed to put your trust in just erodes it over time. I’d love to say that as I have got older my visits to the dentist have got better…they haven’t and now a week Friday I will be going for my first extraction since 2003.

Last year in May I was told I needed a filling. Instead of stopping there my dentist in his friendly way that he was probably taught at university as a way to talk to patients then gave me every minute detail of what he would do to fill the tooth. You see the tooth was decayed beyond saving. He would remove all the pulp you know the bit where the nerve sits, clean it out and then fill the tooth. Panic coursed through me as he continued to give me every last detail. You see for this patient the more technical detail I know the worse it is. My heart rate his risen just typing this, even though I know that he won’t be doing this to my tooth next week. Remembering the appointment still fills me with horror.

I duly made an appointment and the earliest I could get was July. Which was crap because it meant I had a two month wait in which to build to complete hysterics. I was all set for July 12th and then the week before the appointment the dental surgery rang and cancelled. My head was all over the place as that was the same week my mum had been told she had cancer but what type and how bad wouldn’t be known until she was operated on. They offered me an alternative date but we had visitors coming so I said I would ring them back and make an appointment. I never did.

I won’t lie it was easier just to forget about the dentist than deal with it and just get it done. That is when I knew that my fear had turned to a phobia because rational sensible Rachel should have taken over and just bit the bullet and got the filling done. Instead I have endured a year of toothache on and off and the fear of developing an abscess.

When my husband had a phone call to prompt him to book an appointment I asked him to book mine as well. I didn’t want to go but the pain in my tooth was becoming more severe. I’d rather go and get the tooth pulled than wait to get an abscess ( I’ve had an abscess before it took three months to sort out as I developed a dry socket). A dry socket is agony but that is still preferable to me than hearing the drill go whilst it is inside my mouth.

So yesterday despite the mounting panic rising within me I went to the dentist. The dentist tried to tell me off about not coming back for the filling so I just told him my mum got diagnosed with cancer and that I just forgot. I didn’t forget I just chose not to remember. He shut right up and apologised. I then told him that the tooth that needed a filling now needed to be removed and that I wasn’t taking no for an answer. He tried to tell me that he wouldn’t remove the tooth if it didn’t need to be taken out. So I told him either he did it or someone else would. He was quite shocked as normally I am really polite and don’t say boo to a goose – always being terrified that being rude would cause more pain. I explained the tooth had been giving me toothache at a low level for months and that I just wanted it out. It is right at the back of my mouth and its being missing will make no difference cosmetically. He said he would take a look. So with my heart beating out of my chest he lowered the chair.

He took a look at it and asked me again if I wanted it removed to which I said yes. He informed me that the tooth was now fractured right down the middle. There is very little left of my actual tooth as it is being held together with a filling. He said due to the state of it he would remove it for me but he would need to keep an eye on the tooth in front of it as that had developed some decay and would need a small filling. I immediately jumped in and told him I didn’t want any detail. Small filling fine I can live with that. I just don’t need to know what that entails.

I was quite surprised during the appointment to find out I still have a fully erupted wisdom tooth. I was under the impression that they had all gone when I was a teenager as I had a few removed due to them trapping a small piece of gum between the wisdom tooth and the next tooth as they erupted. That piece of gum would then balloon forming like a pink bubble that would then cause horrendous pain. So all my previous wisdom teeth had been removed at the dentist. He explained that the wisdom tooth was showing signs of decay and due to its position it would be nigh on impossible to put a filling in. This again would need to be watched as it would need to be extracted. I don’t know if he means by him or if he meant I will need to have to have it done at the hospital. News to me anyway that I have an erupted wisdom tooth.

I was in and out on that appointment, I booked next weeks appointment and then went out into the fresh air. My legs had turned to jelly and I felt pretty close to passing out. Which isn’t nice when you are alone and waiting for hubby to get the car. I thought ( I don’t know why) they had a bench outside and was going to park myself on that. They didn’t so I had to balance myself against a wall in such a way that if I did pass out there would be minimal damage to me.

Two hours later and my legs were still jelly and I was still feeling like I was going to vomit. Just from the feeling of panic that a visit to the dentist will produce. Jay kept telling me how brave I had been to attend when I hate it so much and for stating my case for getting the tooth pulled. I didn’t feel brave I felt awful. Its a difficult feeling to describe. You know logically the fear and how it controls you is out of proportion to the event but you can’t help it. There is no logic to it and it isn’t a case of talking yourself down. For me it is a whole body reaction, I feel faint, I feel like I am going to be sick, I find it difficult to speak, my legs turn to jelly and feel like they will crumple under me at any moment. The whole time my brain is screaming “Shit get out of here”. My heart rate well is probably close to the 200’s the way my chest feels and all the while my exterior maybe cool and showing none of the inner turmoil / fear that I am feeling.

Maybe that is the problem? It seems no matter how many times I tell people I am terrified of the dentist, it is dismissed with “well nobody likes the dentist”. But it is just so much more than that. I will be honest last week when my tooth was really sore I contemplated going to the kitchen shit drawer getting a pair of pliers and removing my own tooth. Just so I could avoid going to the dentist. If you think that is normal behaviour for someone who doesn’t like the dentist… then you have a screw loose.

My gp tried to help and told me there was CBT online courses I could try to get over my phobia / fear. I told her I was sure there was but when your own dentist fails to appreciate how much going to see him fucks you up then me doing all that work is pointless. It’s not like I can up and change dentists any time I like it took us years to get an NHS dentist when we moved here. Many of them now have closed lists. So it simply isn’t a case of moving and finding a more sympathetic one. However Jay spoke to his dentist that morning and she said she would accept me onto her list if I wanted to move. I am giving my dentist one last chance. If he blows it this time I will be taking her up on the offer of moving within the practice.

Time for a change

For those of you who have followed my blog for some time you will have noticed this week that on both platforms, Blogger and WordPress that my blog sites have had a makeover. 

The reason behind the change was two-fold, firstly it was just time for a change and secondly it was time to move forward. Both platforms used photo’s of Frankie as part of the blog. My Myasthenia kid page had a photo of Mollie and Frankie from the summer as its banner. Every time I went on the page it was a very real reminder of everything we have lost and the grief I feel. The time both Frankie and Mollie have been gone can still be counted in weeks, I still feel very sad most days. When you are with your dogs like I was 24/7 for the last 11 years they become a massive part of your life. It was like losing two members of my family, the family I have made with Jay. Still having them on the Facebook Myasthenia kid page and as a huge part of both blog platforms felt wrong. Although I will mourn them forever it was time to move forward and the new chapter of our life is now with Dembe our yellow Labrador. Not featuring him when he is a major part of my life felt disloyal to him. So hence the change.

I’ve known since the day we lost them both that the day would come that I felt strong enough to update the look of my blogs and Facebook page. I needed there to have been enough time passed that I wouldn’t feel guilty for changing things. It still took an awful lot to change the banner of my Facebook page associated with this blog. I wondered if people would think it was too soon or that I didn’t care about Mollie and Frankie. No one has said anything and deep down I knew they wouldn’t but you are still very conscious of how things may look to other people. 

The blogs were a spontaneous decision on Saturday night, when Jay was working late. I hadn’t like the look of blogger for ages and I needed to change the banner of the WordPress sites. I had taken a lovely photograph of some tree’s a couple of weeks ago and thought it would make a nice banner / background. I love Woodbury Common it has strong emotional ties for me. Every dog we have ever owned has been walked there, it was where I would go to forget the stress of everyday life before I became too sick to walk the dogs. To have that represented on the blog and it being my photograph gives me a sense of pride.

I also needed to change my Google Avatar. The photo had been a black and white one of me and Frankie. It is one of those things where every time I saw the photo I would hold my breath and wait for the pain in my heart to start. I have now changed it over to a lovely photo of Dembe. I wanted to start to look forward as I have been feeling a lot better of late. More like me and not totally bogged down in my grief. 

It has taken time for me to accept that I am allowed to look to the future and how our life with Dembe will be. Being an only dog he is even more the focus of my attention. He must some days wish that I would shut up as I talk to him constantly. He is the thing ( along with Jay ) that has got me through these last few months, who has forced me to get out of bed, to socialise when all I wanted to do was go to bed and just not have to deal with the world. Although it has been really hard on occasion I have made it through 100% of my worst days and that is an achievement.

The final thing I changed was my profile photo on my social media accounts. For a year possibly more it had been a close up photograph of Frankie’s nose. People always ask me about it as it was a cute photo but when you have just lost a faithful companion it can be really difficult emotionally to talk about it and people assume that he is still with us. I then have to say that he isn’t and that compounds the hurt. So I have changed this over to a photo of Dembe because when I speak about him I don’t feel sad. 

It took longer than I thought it would to change all the stuff. Whilst updating all my social media accounts I realised some of them were out of date and they still talked about Mollie and Frankie. So it was sad updating them but I do need to do this. I will never forget them they were a massive part of my life. They the three of them saved me when I was grieving for Travis our first Weimaraner and then when I became sick. I don’t know if I would still be here without their love and affection. Dembe has done the same shown me that there is light at the end of the tunnel and that it is ok to be sad as long as it doesn’t dominate every waking hour. 

So I hope you like what I have done to the blogs etc I think you will agree it was time for a change.

Dembe aged 24 weeks

Post Easter Vibe

Well as usual when there is any disruption to my routine I am really thrown. Like I have said before and in the blog post Upheaval I don’t do well with change. Easter always throws me out as do any bank holidays, it can leave me unsure of what the day is for a week or so. I know it’s not just me everyone is thrown when there routine is altered. So for this week I thought I would just update you all on the sewing and embroidery projects I have been working on recently.

I have been making a lot of cushions. I like making cushions as it combines using my embroidery machine, sewing machine and overlocker. I have also been using my embroidery machine to embroider motifs onto sweatshirts. However my latest make only used my sewing machine and it was nice to get back to basics. I made some bunting, 10 metres of the stuff to go in the garden once the revamp is finished. (currently being held up waiting for various different parts to arrive)

The bunting has been made out of various scraps of material I have had lying around for a while and some fat quarters that I didn’t know what to do with. I can’t wait to have it hung in the garden this summer. It’s the first time I have made bunting and I am very pleased with it. I don’t know why I haven’t made it before.

I really love using my embroidery machine, it gives me another way to express my creativity and also make items that are personal to the gift recipient. I am in a cushion making phase at the moment, which I really enjoy because it uses so many skills. Here are just some of the ones I have made in the last few months.

I love the ones with the Deer on they are my favourite. I also really love the Llama one and the Lion head. Embroidery always cheers me up when I am feeling low, it’s been really hard since Molly and Frankie passed away, even though I have Dembe it’s not the same. I wouldn’t be without him and he is enormous fun but it is a massive change to my routine with him being a puppy.

I have also really enjoyed learning how to embroider sweatshirts. I buy plain £10  unisex sweatshirts and then embroider a nice design on them. It has been a case of trial and error getting the stabilisation right on these. I am much happier with the last three I have done, although I still wear the other two that I did before Christmas.

What is even better with this design was that it was free one month. I am also starting to now get adventurous and changing up the colours from those that my embroidery machine says to do it in. It is important when you do that to write down what colour you are using instead of the one listed on the screen or you can get yourself into a bit of a pickle.

 

I wear this sweatshirt a lot as it is totally me. Whenever I am stressed or anxious I try to sew as it keeps me focused on the task at hand rather than worrying about something I have no control over.

 This is a terrible photo but this is my favourite design that I have embroidered onto a sweatshirt I call it Chinese Chrysanthemums. I bought this sweatshirt especially to embroider this design onto it as I felt it was so dramatic it needed the black background to really pop.

What I love about embroidering clothing is that by changing the colours, placement etc you end up with a totally unique piece of clothing. I am going to try some more embroidering onto t-shirts for the summer. I will use a few of my old t-shirts to practice on to ensure I have the level of stabilisation right so there is no puckering or distortion of the design.

I think I love my embroidery machine ( like I love my sewing machine ) because I have to use the old grey matter and solve problems. It was nice making the bunting recently as it was going back to basics and just doing something that wasn’t too taxing but still needed thought about. 

I also made a peg bag recently, which has made me chuckle as it is like I am doing my sewing journey in reverse. Last year I was making quilts and bags, designing my own patterns etc this year I have made some bunting and now a peg bag. Both though are good basics to master. The peg bag I made my own hanger from wire as I didn’t have a small enough hanger and then made my own pattern. I used remnants from another project to make the bag. Now I can’t wait for my washing line to be back up ( once the garden is sorted ) so that I can see my peg bag in use.

I like using my sewing skills not just to make decorative items and gifts but to also solve problems. So recently I have made us a beautiful front net ( type ) curtain from a Broiderie Anglaise panel I was given. It is brilliant as it stops the light glaring onto the TV during the day but doesn’t impact the light levels in the house. It also provides us with some much-needed privacy. It looks really nice from outside the house as well. The problem with our lounge window is that it is south-facing so we end up with the light streaming in which is lovely but can also mean you end up all summer long having the curtains closed whenever you want to watch the TV. With the panel being denser than net it gives us privacy which we both value (I know that may sound odd from someone who writes a blog). It’s also had the added bonus of stopping Dembe looking at the window and barking at everyone who walks past! 

Upheaval

Currently our back garden is in a state of upheaval, I know that the end is in sight (fingers crossed it will be completed or at least almost completed over the Easter weekend) . We knew it would need to be done this year but had hoped that it would wait until the summer. At the time we had discussed the plans we still had the two Weimaraners and not a puppy who was hell-bent on discovering every piece of rotten decking and turning it into a huge hole, or carrying bits of rotten wood into the house.

I will be honest I don’t cope well with change, I don’t like not knowing when things will be completed. I must have a plan or my anxiety goes through the roof. I often wonder if my inability to cope with change, tell a story just going from A to B, rather than all around the houses, my problems with textures of foods, materials, clothing, dirt on my hands is a massive signal that I have some sort of sensory processing issue or the fact that I am on the Autistic Spectrum.

 I have noticed at my physiotherapy sessions that I take my therapists instructions literally, I have to look at her to see what she is asking me to do as invariably I will do the literal interpretation not what she has asked me to do. I wonder also if my need to control everything is also born from the possibility of being on the spectrum. I like order and control. I like a routine, changes in routine cause anxiety.

The other “issue” I have although I don’t see it as an issue it is just mildly irritating is that I will get fixated over words and repeat them endlessly in my head. A few years ago for months I was fixated on the phrase / word Beth Din after listening to a programme on radio 4 about Jewish courts ( a Beth Din) and getting a divorce ( a Get ). The word Get also became part of this never-ending repetition of words in my head. I now sometimes panic if I hear the phrase Beth Din worried that it will start-up the never-ending loop of this word bouncing around in my head. Sometimes I will also say the word out loud but it is always when I am by myself. That’s not deliberate it just tends to be when I am by myself the word loop can intensify if I am not distracted. 

I know some people might say that this sounds more like OCD but there is no dread or sense that bad things will happen if I don’t say them or have them on a loop in my head. It is just something that happens and I can go months without having a word doing a loop, today’s word seems to be parallelogram. The words can be because of the way they sound or the way my mouth moves when saying them. I know it’s a bit bizarre and I may regret being so honest about sharing! 

So as I said earlier I can’t get to a point without going around the houses and there was a diversion definitely in the paragraph above. So the garden looked ok to those that didn’t realise that a lot of the plant pots were covering holes in the decking. It was getting to the point where we just didn’t have enough pots to cover them as Dembe was always busy making more.

We are doing the work ourselves helped by friends who have offered up their time and expertise. 

On the Sunday Jay started he pulled all this up really easily as it was all completely rotten. The balustrade was also completely rotten through. Jay made a start before our friend Leanne came over to give him a hand. due to my medical conditions I am not physically able to help and it really upsets me that all I can do is plan and order the things we need. Whilst everyone else does the physical labour. Before I was sick I would have loved to have got involved ( wearing gloves of course!).

In 4 hours Jay and Leanne removed loads of the rotten decking but were stuck when it came to the joists. In some places the joists were rotten so it was easy to saw through them and remove them. However quite a few parts were not rotten and sawing them by hand was taking forever.

Jay asked one of his colleagues from work if their husband had a chain saw and within an hour they were here making light work of the joists that had caused so many problems.

Of course to complicate matters we live in a mid terrace, with no rear access. So everything that is removed from the garden has to come through the house. On the following Tuesday Jay removed all the decking and joists that had been piled up in the back garden and brought them through the house. Cue lots of mud and bits of wood. It then took him a couple of hours to saw the large pieces into bits small enough to get into our car. Thankfully it was only two car loads to get it up the tip.

The following Sunday, Mark who had helped us with the chain saw the previous Sunday came over and helped Jay remove the remainder of the decking and the joists. This time they took everything out through the house the same day so that Jay didn’t have to do it by himself on his day off. This last bit only took around two hours.

The next phase of the garden will be completed (fingers crossed) over the Easter weekend. Due to the soil being heavy clay and water-logged we need to install a drainage system called a French drain to remove the surface water or the gravel that will be going down to replace the decking will just turn into a bog. 

The garden did dry out a bit when we had a few days of sun and wind but as soon as it rains it turns back into the mess you see above.

I had to order 25 metres of land drain which is the black coil of pipe in this photo. Rather unrealistically I believed that it would come in a box – obviously my spacial awareness is lacking. It doesn’t look to big here but it is enormous and had to be rolled through the lounge and then the kitchen to the patio. The small amount of patio that Dembe has had to do his business on has got smaller and smaller as more items are delivered.

We have fence posts, fence panels, garden gate and 3x 800kg of gravel. For someone who likes order and routine it is a lot to deal with on a daily basis.

All the fence posts, panels and garden gate also need painted so we are waiting for three days of dry weather so that we can slap a coat of Sea Grass on them ( same as the fence in the photo above).

I know it will be fantastic when its been completed and that Dembe will have a lovely space to run around in, where he can’t slip and hurt himself or chew through rotten decking boards. And although it is being done earlier than we had planned at least we will have the summer to enjoy it. If its anything like it was last year Dembe will be getting a paddling pool to enjoy as he loves water!

So if everyone could keep their fingers crossed for a relatively dry Easter it would be appreciated.

Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome