Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

Ophthalmology

I wrote a while ago about a rather upsetting visit to the gp’s surgery, which you can read about here. I haven’t updated you all since through my blog, if you follow me on The Myasthenia Kid Facebook page then you will know about this. So I apologise for going over old ground in the next few paragraphs but after that it’s all new, I promise.

So to provide you with some context back in July I saw a trainee gp or as I like to call them a 12 year old with attitude. They were terribly dismissive of my dry eyes, they looked at the Clinical Commissioning Groups dry eye pathway – so what drugs they are “allowed” to prescribe. They tried to palm me off with stuff that came under mild dry eyes and this was after I had the first corneal abrasion. So I had to point out that a corneal abrasion didn’t suggest a mild dry eye problem. So I was given more day time drops but no help at all for the night time ointment that I am allergic to. I got a shoulder shrug and was shoved out the door. Just a quick update though finally after waiting since July I now have an appointment for the Ultrasound that they were supposed to request……for the 10th October! Glad it is nothing serious eh?

So fast forward and blog readers only, this is where you will find out that exactly 4 weeks after the first corneal abrasion, I got another one. So I made a doctors appointment for the 27th August. I attended the appointment filled with hope as this would be with my gp, who had more experience and didn’t feel like they had anything to prove. Unfortunately that was not the case. I explained to the gp that I had suffered 2 corneal abrasions in the last 4 weeks, that I am allergic to three brands of the night time ointment that I had tried . I attempted to show them these photos to show how bad the reaction was but I was told quite firmly “I believe you”

It soon became clear though that they really didn’t believe me. They asked if I was allergic to Lacrilube which I told them I had used it in the past with no issues, however there is a national shortage of it in the UK, I was using the NHS suggested replacement and I was allergic to that. They then decided, despite the computer flashing up that there was a national shortage of this drug when they tried to prescribe it to ring the local pharmacy to see if they had it stock. I could hardly contain myself when I heard the pharmacist tell them loud and clear there is a national shortage of the medication. They then proceeded to tell me that she would prescribe me more of the ointment I was allergic too and if I didn’t want to use that perhaps I could get up 3 to 4 times a night to put my day time drops in.

I will admit to getting rather cross at this point and asked at what point would they consider repeated corneal abrasions serious enough for me to be referred to the Ophthalmologist? I pointed out that I have a connective tissue disorder Ehlers Danlos Syndrome and that eyes are made of collagen. I challenged them to explain why putting my sight at risk was acceptable as due to having EDS I was at risk of scarring. I was really angry, so angry I would have cried if I could produce the tears. My voice was shaking. They then said “you seem angry”. What is this naming feelings shit? It doesn’t make me calmer it makes me more angry, I am not a child who can’t identify what I am feeling. I got crosser and replied “Yes I am angry. I am angry that after two corneal abrasions and two gp appointments I am still being fobbed off.” They interrupted and said “I am not fobbing you off but the Ophthalmology department won’t see you whilst you are taking morphine as that will dry your eyes out.” I pointed out that I was diagnosed with dry eyes at least 5 years before I started taking morphine and I found it highly unlikely that morphine would now suddenly be making my eyes much drier than they had been for the last 14 or so years. 

To cut a long story short I had to demand to be referred to an ophthalmologist as they had tried all the eye medications open to them as a gp and now I needed a specialists in put. To pacify me I am sure she told me she would speak to the ophthalmologists and see if they would accept a referral. The attitude of this doctor to essentially prevent me from seeing a specialist when it was clear that my eyes were severely dry and causing corneal abrasions because my eyelids are sticking to my eyeballs overnight really upset me. Like I said earlier if I could have cried I would have done. I am so sick of everything being a battle and I am seriously worried for patients if they have conditions that need a consultants input that referrals are being barred for no other reason than financial. That is wrong on so many levels and against the hippocratic oath.

Funnily enough less than a week later I got a letter through to book an appointment with the Eye Hospital. Look at that, they did want to see me, even if I was on medication that could make the dry eyes worse. The fact that my letter came through so quickly made me even angrier because it was even clearer that this was about finances not what was best for the patient.

So today ( Tuesday 24th ) I went to the eye hospital. I attended by myself on my mobility scooter as on the letter it stated I could be there up to three hours doing tests before I got to see a consultant / registrar. That was way too long to expect Dembe to work as he is only 10 months and I won’t put him in situations that would be too much for him for fear of putting him off due to bad experiences. So Jay dropped me off and headed back home. 

As usual whomever designs hospital waiting rooms seemed to have failed to grasp that some patients will need mobility aids such as frames, rollators, wheelchairs and scooters. The chairs were crammed together with no space for anyone using a wheelchair or scooter to get themselves into and out of that area safely. This total lack of awareness in a fucking hospital of all places really grinds my gears. This place should be the gold fucking standard of accessibility as surely the disabled are the ones who are going to be using this resource more than the rest of the population. Come on people its 2019 and we are still treating the disabled as an inconvenience or invisible.

I digress. I managed to find a spot for me to occupy that wouldn’t cause an obstruction. I was worried as many people attending the clinic are legally blind, so I checked with the nursing staff that I was ok. I had a quick vision test reading letters off a board  and then I was back in the waiting room. I would be called into consulting room 7, 8 or 9. I was called in reasonably quickly by a young lady doctor. She was exceptionally polite and courteous. I won’t lie I was terrified all of yesterday and this morning that they were going to treat me like a time waster and tell me I would have to come off morphine before they would treat me. After all this is more or less what the gp had suggested. This couldn’t have been any further from the truth.

The doctor was very concerned to learn that I have been suffering from minor corneal abrasions for a year before having the two within 4 weeks. Fingers crossed I have managed to avoid one since 10th August – I know I have probably just jinxed myself. She asked me what ointments I had tried at night to lubricate my eyes and attempt to prevent the abrasions. So I brought out the three tubes. I then said I am allergic to all three, so she asked me to tell her the symptoms. Thankfully in the waiting room I had the presence of mind to screenshot my photos from August so they were the first photos on my phone and I didn’t have to spend an age scrolling – I take a lot of photos. She was quite shocked at the level of swelling. I let her know it isn’t just swelling but the skin burns and itches. She said to me that I shouldn’t use the ointments with that level of reaction to them. Which left me wondering why my gp had issued me with another prescription for one of them? Had they bothered to look at my photos maybe they would have accepted how bad the reaction was. How I have got away with no abrasions since August I have no idea as at best I have probably used the ointments 2 to 3 times a week. As the swelling is crazy after one application and takes a couple of days to go down.

We then went through my day time routine with my eyes and the medications being used, plus my symptoms. I am pretty sure that the gp had stated that I had watery eyes due to dry eyes, which as weird as that sounds is a symptom that some people have with the condition. I never have. I used to have eyes that watered every time I yawned but they don’t even do that anymore. The consultant seemed genuinely surprised when I said no my eyes don’t water and she rechecked the letter she had in front of her. She was very pleased that I had taken matters into my own hands and tried different drops as it moves the situation forward ( I brought all my eye medications I use or have tried with me). She told me if I hadn’t of done this she would now have to try me on various medications to see if they worked. As this had already been done she could go straight to prescribing Ciclosporin eye drops. 

The Ciclosporin eye drops are to used instead of the night time eye ointment. She has warned me they will sting badly when applied and probably make my eyes water. If I can stick with it around 80% of people who are placed on them find they work for them. They will take 3 months to reach full effect. However she wants me back in clinic in 6 weeks as by then I should know if they are helping at all. At that clinic appointment depending on how they are working they may add steroid drops into the mix . She let me know if the Ciclosporin drops don’t work we haven’t reached the end of the of the road and there are still other things to try.

I also had a thorough eye examination. My retinas were checked, the surface of my eye was checked – I had the lovely yellow dye put in them. She flicked my eyelids up on themselves – that made me feel sick and she did it without any warning! She also prodded the bottom lid with a cotton wool bud ( Q tip ) looking at the tear production glands. She told me I have two issues. Firstly I have very dry eyes probably caused by a combination of factors my hormones – the delight of the menopause can make dry eyes worse, my medications – I dispute this as these medications I have been on for years and the dry eyes only took a turn for the worse 12 months ago. However I can’t be bothered to argue as they are treating me seriously and not fobbing me off. Thirdly your autonomic nervous system also controls your mucous membranes so it would make sense with mine being so naughty that it has a hand in this. I made it clear that I wasn’t concerned with what was causing the dryness more the fact I wanted the corneal abrasions limited if not stopped.

After the appointment I was absolutely fucked. I hadn’t realised how very stressed I was due to the gp making out that I was wasting everyone’s time. I was worried about the information the referral letter would contain . The doctor I saw today was really pleasant and thorough. I felt listened to and validated in my demands to be referred to the hospital. Ciclosporin can only be prescribed by a consultant and will mean ( if I can tolerate it) that I will need to attend the eye clinic every 6 months. However after two corneal abrasions it should never have needed me getting so angry to push the gp to do this. Especially when they weren’t offering me any way to limit or prevent the corneal abrasions. I do worry for other patients all over the UK who have real issues that need consultant level intervention who are being denied access to them. I thank god that I stood my ground and got my referral.

Just for a few giggles – I went through the entire hospital and hospital grounds on my mobility scooter completely unaware that my face was stained with the yellow dye they had used on my eyes. No wonder I was getting a few strange looks!

It was worse than this, it was only because I had wiped my eyes I realised!

Update on Dembe

For this week’s blog post I thought I would give you an update on Dembe. For those of you who would like to see more of him, he has his own blog over at http://www.thedembediaries.com, where I publish what we have been up to over the previous week, with video’s and photographs.

Dembe was 10 months old on Monday (16th SEptember 2019). He now weighs 32kg and is 23 inches to the shoulder. I can’t sing his praises loudly enough, he is a simply adorable pup. He is so loving, sensitive, clever and just happy. I have never known such a happy dog whose tail only really stops wagging when he is asleep but he has also been known to wag it in his sleep as well.

We are training him to become my assistance dog, so we have been doing lots of training going into various different environments, so that he can cope with strange noises, people, smells etc. He becomes a different dog when his yellow vest goes . He knows he is there to work and is on his best behaviour. Like anyone though he has his good and bad days . His bad days though most people wouldn’t even notice, Jay and I are acutely aware.

We passed level one basic obedience training and handling back in July and we are now attending level 2/3 with him for the next few weeks. We all enjoy going to the class and being able to ask the trainer questions and for advice. Dembe loves seeing the other dogs and his time spent with Jay is creating a fantastic bond between them.  When I look back at how he was at the first training class in June to how he is now the transformation is magnificent. We have a dog that listens to instructions and walks beautifully to heel. In fact on a few occasions Jay has been asked by complete strangers for hints and tips on training. Which always makes us laugh.

He is a really sensitive soul, he hates thinking he has done anything wrong. If he accidently hurts me ( which all puppies do clonking you with their paws etc)  he panics and smothers me in kisses. He is such a very loving boy who likes to be touching you when he sleeps or sits next to you. He is a mummys boy but it is wonderful to see how excited he gets when Jay comes home or Jay goes to give him a cuddle.

He is very clever, it took me a matter of minutes to train him to remove my socks. He can retrieve various toys from his toy-box when you ask him to. If you say “where’s crocodile?” “find him” he runs to the toy box and will retrieve his favourite crocodile toy. He will do this with a few toys like piggy, doggy, baby bear, baby blankey and blue dinosaur. I have also had him retrieve his empty kong from upstairs. We were talking about this at dog training last night and apparently this shows he has an aptitude for searching or being a search dog. This isn’t something we have trained him to do. One day I asked him to get crocodile and he did it. I thought it was just a fluke so I asked him to do it again later and he did. I then waited for Jay to get home and showed him. The next day I asked him to find Piggy wig and he did. Now it is our party piece when we have visitors!

As he is 10 months old there are things we still need to work on, things that we have let slide that are now becoming an issue. He is very keen to be as close as possible when you are eating. Which is a bit of a nightmare on the rare occasions we have guests. We need to stop the sitting next to you attempting to get your head in your plate nonsense that is happening . The other thing that needs working on is his need to jump up at me when I am on my mobility scooter and I have come to a stop. However that needs Jay to keep him on a shorter lead and to stop him getting the ability to jump. That will be a huge challenge as he never will see that he influences or has control over what Dembe is doing. Despite doing all these hours of training so it can be a bit annoying at times when you are having the same conversation over and over again. 

One thing I am very sure of is I want a dog and not a robot. I love his character and I don’t want him to feel like he can’t be himself. 

It was very funny on Sunday as we were taking a trip around a supermarket. This one was laid out differently and had a huge precut cheese section at the end of the deli counter. There is nothing in the world that Dembe enjoys more than cheese. He will literally spin in circles if you get the cheese out of the fridge. So here he was confronted by his most favourite thing in the world at Dembe height and easy to access. I closed my eyes fearing we were going to have to pay for a huge block of cheese because he had sunk his teeth into them. He sniffed for ages, every piece of cheese got a sniff but he was very restrained and when Jay told him leave he did indeed leave it. That was a massive test in self control for him and I was so proud. 

But even prouder when my friend who was the duty manager told me the story about the guide dog that visited their store. When you think of Guide dogs for the blind you think of superbly trained dogs that would never be tempted by food whilst working. They are the dogs that are so well trained they put many other dogs to shame.

At the side of the fish counter in her store they have a freshly cooked pasty section. At dog height…how perfect. Beccy told us that as the owner of the guide dog was talking to the fishmonger, the guide dog took a sly lick of a pasty  at the front of the shelf. Then stared down the fishmonger who had watched him do it, in almost a dare to see if he would tell the owner. The fishmonger said the attitude from the guide dog was hilarious and he did indeed keep quiet! That really made us laugh and made him obsessively sniffing the cheese not such a big deal, I mean if guide dogs get a bad day!

Dembe makes us laugh on a daily basis. I didn’t know it was possible to love a dog as much as I love him. He likes walking around carrying stuff in his mouth and he walks around with his antler chew like pipe. When we first brought him home it was really hard, we were dealing with so many conflicting emotions initially it felt like I was just going through the motions. I didn’t feel that bond with him like I do now. I was constantly reminded that I didn’t know him like I knew Mollie, Frankie and Willow because I had known them years. It fueled my anxiety because I was constantly worrying that if there was something wrong with him I wouldn’t know or I would miss the subtle signs that I wouldn’t have done with them. Now however I feel like I know him more and we do have a wonderful bond. I know I love hima crazy amount whereas before I was always doubting myself that I did.

At times I wondered if we had done the right thing by getting him so soon after Frankie and Mollie passed away. But I credit him with getting Jay and I through that awful dark time. We wouldn’t be without him and he brings such joy to us both.

Everyone who meets him, falls in love with him and his gentle nature. In all the time we have had him I have never heard him growl. Bark yes, he likes to do that a lot. Which makes me laugh as everything I have read about Labradors says they seldom bark. Obviously Dembe didn’t get that memo! 

He is also very good when I am poorly and he adjust his energy level accordingly. He did it when I was poorly with a chest and sinus infection about three weeks after we brought him home. He would sleep all day on my feet and only run around like a maniac when Jay came home for lunch and at the end of the day. If I am feeling crappy he will sleep beside me on the sofa having a cuddle. If I am feeling brighter he will want to play more and have more engagement with me. Again this isn’t something we have taught but this is something he has done instinctively, just like his Uncle Frankie.

I could go on and on about Dembe the wonder dog but I won’t bore your further with this quick update.

Empathy

When I wrote last week’s blog post Rainbow Bridge  I never expected in a million years the response that it received. It wasn’t just me hubby had people coming up to him in work, telling him that they couldn’t read it without shedding a tear or that it said what they felt but had never been able to express it. I had followers on Instagram contacting me about their recent losses and long ago losses too. On Facebook it was the same, with many people contacting me or leaving a comment. . It was emotionally hard as I am very empathetic, so when people start to get tearful when they are talking to me, it makes me cry too. But when I wrote the post I was half expecting it to stir up a lot of emotions because I had been in such a mess as I wrote it. I have to be honest I never did a final check on the post to look for errors, mainly because I found it so upsetting to read, it was real and raw. I haven’t even gone back to look at it now to refresh my memory before writing this one. I just can’t do it, I have already been in tears today twice over the dogs. It is always just bubbling away under the surface for me at the moment, although to look at me or to see any of my social media posts you would never know.

I am so touched that something I have written has moved so many people. I thank each and everyone of you who commented or messaged me. It was very hard last Thursday as I had no idea how it would be received. I had no clue if people would think I was wallowing, being self indulgent or a drama queen. That people would think that I should pull myself together and get on with the rest of my life. I promise you I am not self indulgent, wallowing or being a drama queen. I just write about life and my experiences. I try to give a voice to those feelings that we push down and don’t let anyone else see. I take a chance that people won’t reject me or ridicule me because I try to talk about things that many would rather brush under the carpet. Although there have been several articles regarding the death of a pet in National newspapers it is still treated with some degree of disbelief by those who have never had an animal / pet in their lives. 

The whole point of my post was for you – whoever you are, know that it is ok to feel whatever you are feeling, to express your grief ( and it is your’s and no one else’s) anyway that you like. That these feelings are totally normal. You are not weird, you aren’t wallowing in your grief, you aren’t an attention seeker and you are certainly not being a drama queen. You are hurting and it will take time to process all that emotion. Hell I am only 8 months on and there are days where I can barely keep it together. Days where all I do is cry. Days when I feel guilty when I know rationally I have absolutely nothing to feel guilty about. I just wanted you to know you aren’t going mad, I honestly thought at times I was losing it. All of those feelings, even the uncontrollable rage that even surprises you when you roar, is totally normal. It is the beast called grief and it doesn’t have to be something that you go through alone.

As I touched on in my blog post even when you have suffered from a significant bereavement such as a partner / child / sibling / parent / friend, people who haven’t been through that kind of grief can’t begin to imagine the enormity of the feelings of loss and pain. They may see you red faced, tear stained and see your grief but that is soon forgotten because it has no direct impact on their lives. The next time they see you, taking the kids to school, going to work, getting the shopping – all things you have to do despite the pain and grief they assume you are “better”. They don’t understand that grief goes on forever. They seem to think that grief has a timeline and by a certain amount of time say 6-12 months maybe sooner if they are real dicks, you “should” be “over” it. How do you explain that there is no getting over it? You are just getting through each day the best you can. There will be good days, bad days and the worst kind of days.  Life will probably never be the same again. But there will never be or has there ever been for anyone who is grieving a time when they are over it. Getting Over It has to be the most grotesque phrase ever. Followed by Time is a great healer. There is no healing from grief, you carry that pain forever.

I had people contacting me about dogs they had lost thirty years ago during their childhood that they still mourned for.  Others told me about their recent losses that they just couldn’t process or that in the proceeding days before my blog post it had hit them, after thinking that they could keep going and carry on as normal. I was quite honest when I spoke to them and told them Jay and I have very little memory of January and February this year.

 We know we got Dembe, we know he was tiny but ask us to recall anything significant like where we took him on his first walk. What the date of his first walk was, his first bark, his first growl all the stuff we would normally remember and we draw a blank. It’s not because we didn’t care about it, purely our brains were overloaded processing what had happened when we lost Frankie and Mollie within 7 days of each other. I am so glad that I started the Dembe Diaries blog and his diary that I base the blog on, so that in years to come I can look back and see all those things in black and white that my brain was unable to absorb at the time.

 I do remember Jay barely spoke in the first 4-5 days after it happened. It was quite stressful as I went into list mode, trying to control everything because my anxiety spiked. His anxiety spiked because I was making so many demands on him all the time and obviously he needed to have some control in his life too. It was very difficult trying to get him motivated to help me sort the house out ready for Dembe’s arrival. Especially as we couldn’t stand being in the house as it was just full of reminders of how empty it was. We did cry together and we did talk about our babies, all of our babies. But the pain and grief was hard because although it has happened to both of you (or all of you) it is also an individual thing that no one can make better or take away from you. People grieve in different ways. Just because Jay wasn’t breaking down in tears every 5 minutes like I was didn’t mean he wasn’t hurting or struggling to cope. You only had to take a look at him, ashen faced, tired and so very quiet, grief and pain was written all over him. For a few days I was worried that he was going to drop down dead from a heart attack or stroke he looked so ill.  

Grief is weird one minute you can feel like you are doing ok and the next minute it feels like the world is imploding. There is no rhyme or reason to it, you are carried on its current and it takes you wherever it pleases. There is no control of it, it controls you initially, even denying you sleep when it wants to. Both Jay and I suffered from terrible insomnia in the 7 days after Mollie and Frankies passing. We would find ourselves downstairs in the middle of the night watching crap on the TV whilst eating chocolate biscuits and drinking sugary tea in the hope we would just pass out from a sugar overdose. I remember one day within about 20 minutes of each other we both left the electric shower on, when we left the bathroom, returning to it a few minutes later, neither of us could work out why we had left it running. We had no recollection of leaving the bathroom.  Life really was being lived on autopilot, all we could do was keep putting one foot in front of the other and get through another day.

I want to tell you that things do get better, the grief becomes less overwhelming.  I feel like I am finally starting to live life again instead of just simply going through the motions. I am not saying that in 8 months you will also be feeling better, it could be less time it could be substantially more time. But there will come a time when you let a breathe out and know that you are starting to be you again.

Up until about a week ago the last time I listened to music and enjoyed it was 29th December 2018. That was the day that Frankie passed away and I had been listening to my Sinead O’connor LP. I didn’t play any music for a couple of weeks. After that time had passed, I tried but I found the noise too much and overwhelming. I had no emotional connection to the music. I would rather be in silence or have the TV on low in the background.  For the last two weeks I have played music non-stop. I have sung at the top of my voice and quite possibly scared the neighbours. I have found the joy in music again. I haven’t played my Sinead O’Connor LP, I think that one will take some time. I may not play it again for several years, I’m not setting myself a target, I will let it happen, I won’t force it. One day I will sing something from the album and it will be like an ear worm that won’t die until I play it. At the moment anything from that LP makes me sad.

We have also started planning things for the future. We have booked  a short break in the UK next year and we will be taking Dembe with us. It is very exciting. This will be the first time since 2006 that Jay and I have had any sort of holiday. It is only 3 nights away but it will do us all some good just to get out of the house and away from the day to day. I am nervous as hell as I have become a real homebody since becoming ill. Other than stays in hospital I haven’t been away from the house in 13 years. It is hilarious to me that I am getting a bit anxious thinking about it when Jay and I have travelled to Sri Lanka, USA (Florida), Antigua, Paris, Menorca and various places all over the UK for weddings / christenings. I know that we can do it, it is just my world has been so very small over the last 13 odd years.

So please be kind to yourself, wherever you are in your journey with grief. Everyone does grief differently, there is no one size fits all. What works for you may not work for anyone else.  Remember living life does not mean that you have forgotten those who are no longer with us. At some point things will get easier, you will reach a new normal. It is not a journey you have to do alone. If more of us start talking about grief and how it affects us we will educate those who have never experienced it and maybe create a little more empathy. The world could really do with more empathy at the moment.

Rainbow Bridge

I have  called this blog post Rainbow Bridge as all pet owners will know what I am talking about and can make the immediate decision whether or not to read this post. If you decide to skip it, I understand . I can’t even read the poem Rainbow Bridge without breaking down and turning into a snotty, red faced, tear stained mess. So if you decide from the outset that this post probably isn’t for you, I get it. I will just reassure you that I will not be talking about Frankie or Mollie’s passing at the start of this year. That shit is just too raw still to deal with and I would prefer to spend the remainder of the day functional rather than being the snotty, red faced, tear stained mess I know I will become.

 
The blog post is called Rainbow Bridge because I want to talk to you about the very real depth of grief losing a pet, any pet can cause you. A grief that you can feel embarrassed about because you didn’t know it was possible for your heart to physically hurt so much and you not keel over and die. A grief and depth of feeling that unless you have lived the experience you can not begin to even comprehend what the other person is going through. And a grief that you feel you have to hide from the world as grieving over an animal is still seen as self indulgent, selfish, weak, being melodramatic. A depth of feeling that is so strong that it even takes you by surprise.
 
We are in this country ( the UK ) crap at dealing with other people’s grief, even when they have lost a child or a partner. We seem to assume that once a person returns to work or starts doing normal things again that they are ok. Many people seem to think that there is a set period of time that a person should grieve for and after that time has passed, all that emotion and sadness should just turn off. If they don’t you are seen to be wallowing or attention seeking. A lot of people just don’t seem to understand that grief is not a linear journey and that it never ends. You will always be dealing with your grief one way or another. Time is not a great healer, there is no healing for grief, there is a just getting used to it. What initially in the first days, weeks and months seems all encompassing does slowly reduce in size but it never leaves us. It is something we carry always.
 
Those of you that aren’t pet owners may be surprised to read that it is exactly the same for those who have lost a pet. I really hate using a the term pet as I feel like it diminishes their status. But until someone comes up with a better word, I will have to use the one that is universally understood. Most people these days understand that our pets are more than just “pets” they are much loved members of the family within their own rights. Which is why it cut me to the core when somebody recently clumsily said to me ” You were so lucky to get Dembe when you did to replace…” she stopped herself continuing with this statement as I think she realised how awful what she had said sounded. 
 
There is no replacing a beloved cat, dog, guinea pig, hamster or horse. The same as you can’t replace a mother, a father, a child, a friend. Each one of those like our pets are unique. So why people use the dreaded replace word I have no idea. I’m glad it was said recently to me rather than just after it had happened because I don’t think I would have been able to control myself. I may have got physically violent because it was just so insensitive. Now because there is a little bit of distance from the event and I am not caught up in the overwhelming emotion of it, I can understand that it was clumsy and not ever meant the way it sounded. Why do I know that? This person has recently lost her mother and father in the space of a couple of years. She knows there is no replacement for them, she is also a dog owner and knows they can’t be replaced either. Had she said this in January I wouldn’t have been so forgiving.
 
When I found myself in the position of losing Frankie and Mollie within 7 days, having lost Willow 55 weeks earlier, I honestly didn’t know how I was going to carry on without them. The pain, the grief was just so overwhelming. The house had already felt strange after Frankie passed and then when Mollie was no longer here, it seemed so cold and empty. I missed the feel of their fur, the warmth of their bodies, the noise their paws made on the laminate floor. The pools of water Frankie liked to dribble all over the floor after having a drink. The barking, the farting, picking up the poo, the bonio (dog biscuit) crumbs. Everything that had meant being a dog owner for the last 15 years had just been suddenly snatched away with no warning. Everything seemed so bleak and miserable. You will never know how much you will crave a cuddle with a dog ( or any pet ) until you suddenly are no longer able to do it. 
 
That was the hardest thing to cope with in the days that followed their passing, that I couldn’t stroke a dog, be licked, have a tail wag. Jay and I spent every minute that we could out of the house because being in the house just magnified our loss. We were lucky in the respect that a week after Mollie passed away we brought home Dembe. I dread to think what life would have been like without him. I know some people will think that far too quick and that they don’t feel that they could take on another dog / animal whilst they are still mourning their loss. Everyone is different and there are no rights or wrongs in this situation. Had there not been any puppies available we would have had to wait, it is just the way things happened. We felt at the time and still do that it was written in the stars. The breeders had the same surname as the breeders of Mollie and Travis. Dembe’s mum was called Willow, it all seemed like it was just meant to be.
 
Did having Dembe stop the grief? Of course not. In some ways it complicated things because initially I was terrified that Dembe was going to die. My anxiety went up through the roof. It had been a very long time since we had a puppy in the house and it all seemed very alien to us. So whilst trying to come to terms with losing my babies – which they will always be to me no matter how old they were, I had a new baby to deal with. It some ways it was also good for us, we threw ourselves into socialisation and getting lots of experiences under his belt. That meant we had to leave the house and see people. We invited lots of friends over to get them involved. I don’t think for us any time would have been the right time to bring a puppy into the house. Our lives had revolved around our Weimaraners and this was such a massive change to our life, it will probably take us years to get used to it or our heads around it.
 
What did surprise me was the way the people seemed to think once we had Dembe that the grief would just suddenly disappear – as in the replacement theory. There were good surprises as well, people that I had only ever known on facebook sent flowers, cards, gifts. We had so many messages from people. Even though at the time it was hard to read them, not because there was anything wrong with them but just because they were so kind and thoughtful. I heard that Jay’s boss broke the news to his colleagues at work and a couple of them burst into tears because on the previous Saturday the poor man had also had to tell them that Frankie had passed away. No one could quite believe that life could be so cruel. I still don’t believe it but I am happy that Frankie and his mum / best mate are together again.
 
Initially I felt like we had to hide the fact that we had been looking at puppies and we had visited Dembe, paid the deposit two days after Mollie had passed away. It wasn’t because we didn’t love her, I have been crying on and off as I have been writing this. It is because Jay and I are realists, we knew the dogs couldn’t go on forever. Mollie was 14 and quite deaf, Frankie was losing the use of his back legs, had arthritis in his hips and spine, he hadn’t been able to wag his tail for months and was a huge 41kg, 12 year old dog. He had lived far longer than anyone had expected. Even before we lost Willow in 2017 we had been discussing when we got a dog in the future what breed it would be and what his name would be. We had always said we would have a boy, due to the fact both girls had spay induced incontinence after being spayed as emergencies. We said a Labrador as Mollie had always had a thing for black Labs, she adored them. We never knew why but if she met a black lab on a walk her face would light up and she would play bow. The Weims were as much part of our decision making process as we were, as we wanted their blessing. I know none of them would have wanted us to live our lives without a dog.
 
I saw a Meme not long ago that said Dogs fill your life with many happy days and the one worst day of your life. It is pretty true, although the worst day is the worst day when you have to say goodbye, the not so worst days follow, where you have to face life without them and hope that Rainbow Bridge is true and that one day you will all be together again.
 
In Loving memory of 
Travis Morris
Mollie Morris
Willow Morris
Frankie Morris
 
Not a day goes by that I don’t mourn your loss. Not a day goes by when I don’t talk about at least one of you to Dembe. You would have loved him so much.
 
Travis
Mollie
Willow
Frankie
 
Everyone thinks they have the best dog ever,  none of them are wrong.
 
Dembe

Brave

I don’t class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don’t have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn’t travel the hours journey to the hospital by myself. Having pointed out the fact I don’t do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn’t have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don’t know. I’d have had a fucking heart attack, there isn’t enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don’t run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn’t travel alone? It was still fucking huge for me to navigate the hospital alone – one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor’s appointments at the gp surgery by myself and the same for dental appointments but it doesn’t mean I am happy or confident doing it. I hate it. It has got to the point where I just don’t like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before – someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who’s walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality…..once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can’t blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn’t have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn’t be in anyone’s way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it’s a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn’t doing its job, I have had two migraines in the last two weeks. Plus I really shouldn’t be on amitriptyline with PoTs

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe “There’s mummy look”. Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can’t tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today’s travel and navigating the hospital corridors have left me exhausted. I don’t feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.

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!