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.

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Hoping for a quiet 2019

My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.

 
Due to the shock, upset, grief hubby has taken some time off work. He already suffers with anxiety and depression and to ensure he didn’t take a nose dive he saw the doctor and got himself signed off. He didn’t want to see anyone or talk to anyone. Losing Mollie hit him very hard as she was his dogs. Plus it was very traumatic for us over 24 hours where it became clear that she had suffered from a stroke and there would be no recovery from this. We nursed her overnight and made sure she wasn’t suffering. Right up until the end she only wanted her dad, whenever she was out of his sight she panicked. Jay stayed with her until the end as I had stayed with Frankie just the week before. To say our hearts were broken would have been an understatement.
 
I took a break from this blog as since the beginning back in 2008 the dogs have featured quite heavily in it. My Gravatar is me with Frankie, Frankie is the banner on WordPress, on Twitter his photo is my profile picture and its the same on Facebook. Although I have managed to change my about me pages on both blog platforms, I can’t remove his photo from any of my social media profile photos.  It feels like a huge chunk of my life has just vanished. Life as I knew it was taken away from me in the space of 7 days. I never knew I could feel so utterly broken by the passing of three dogs in just a little over the year.
 
For a few years Mr Myasthenia Kid and I had talked about what would happen when we no longer had any dogs. Initially we had said we would get a Labrador ( black) then we talked about a Beagle and also a Bracco Italiano. However for the last few months I had said I didn’t know if I wanted another dog, I knew losing our last two Weimaraners would hit me really badly and by getting another dog meant at some point in the future I would have to go through the pain of losing it all over again. Jay was not having any of it, he said that I was already completely socially isolated and without a dog I would have no company at all. He felt it would be very damaging to my mental health. He was right, as 7 days without a dog in the house were the worst thing ever. I missed everything about having a dog, the cuddles, the mess, the unconditional love, someone to have silly conversations with.
 
By the Sunday after Mollie’s passing we decided that we would get another dog and we started looking on-line for Labrador puppies. I had to give myself a crash course on Labrador’s having not ever owned one. I located several breeders who had litters on The Kennel Club Website. Luckily one lady immediately responded to my email and told us she had two male yellow labs for sale. Obviously we had originally said we wanted a black lab but by this point it didn’t matter what colour it was. We needed our house to feel like a home again, we were both distraught and sinking fast. We arranged to travel to see the 2 pups available the following day.
 
The rest is history, we now own a 9 week old Yellow Labrador called Dembe. We chose his name from the TV programme the blacklist, it means peace. Which you will probably agree we need by the bucket full. Dembe came home with us on Friday 11th January. You can read all about him   here as I have started his own blog for him. I will from time to time have photos of him on this blog but it is much easier to have all the news about him on a separate blog. Every Monday I will give a run down of what he has been up to the previous week. 
 
Some of you may be judging us, that we got a new dog too quickly or that we didn’t love our other dogs that much because we replaced them with Dembe. Dembe is not and has never been a replacement. He is an addition to our household. He is very much-loved for the dog he is and will become. Anyone who thinks any less of us for this can just fuck off as far as I am concerned, your opinion is of very little value to me.
 
So whilst I took a break from here, I have been setting up Dembe’s blog. I managed to keep writing which out of all the things I do creatively was the only thing that I could keep going. I hadn’t been able to sew since Mollie passed away. I managed on the 16th January after a break of nearly two weeks to sit and do a small piece of embroidery. Mainly to ensure that Dembe wasn’t scared of the noise the machine made. The only thing that has freaked him out so far has been the ironing board and it does the same to me if I am honest.
 
My health has been hit quite hard by the sudden turn of events. I have suffered vertigo, continuous headaches, back spasms, Eczema, migraines and ptosis. As usual it a few days after the event before I started to go down hill. Thankfully with Jay off work we have been able to manage Dembe’s care and socialisation process. To be honest without him I would have crawled into bed and never come out again. This little chap has saved us both. The lady that we are friendly with at the vets ( who had a soft spot for Frankie) called Dembe our miracle dog. She knew how much our lives focused on our dogs and also knew that without a dog in our life we would fall apart. 
 
So many people have told us that we have done exactly the right thing. It doesn’t mean that we loved our Weimaraners any less, it is because we loved them so much that we had all this love to give to another dog. 
 
Dembe has bonded with us both. He is such a happy, laid back dog. His tail wags continuously. Everyone who meets him falls in love with him. I thought at one point after Mollie had passed away that Jay looked like he was going to drop dead from a broken heart. He was just an ashen colour. I have seen Jay poorly many times but this was the worst I had seen him look for a long time. Since Dembe’s arrival he is looking so much better, we both feel like there is a future in front of us. In the immediate aftermath of losing both dogs it felt like we were staring into the abyss .
 
I am hoping that my health stabilises shortly, it is going to have to as Jay goes back to work from Monday 21st and it will just be me and Dembe. However Jay will be coming home at lunch times to help with feeding and toileting. He still has a few weeks until he will be able to go out for a walk. Whilst Jay is home though I am trying to take it as easy as possible. Jay has been doing everything for me as usual.
 
2018 ended in a way that I didn’t see coming and 2019 started in a way we never envisaged. All I can hope for is a quieter year for the rest of 2019.
 

 
 

 
I will never forget the love that these three beautiful loyal dogs gave me. Run free my darlings, we will miss you everyday for the rest of our lives.

Insomnia

I have written about my struggles with insomnia previously, thankfully though its not been something I have struggled with since around 2016 when I was prescribed melatonin and the antidepressant Mirtazapine . Both have improved my sleeping habits immensely. I also take a low dose of amiltriptyline to prevent migraines and again this helps me sleep….until last Sunday night (18th November).

Sunday nights have been a sleeping issue for me as long as I can remember. I think the sleeping problems started over the anxiety of going back to school on the Monday. Throughout my school years I was bullied, so going to school was a cause of anxiety. If ever anyone says to me their school days were the best of their lives I want to punch them in the face. For me they were a source of misery and I never knew who would be gunning for me next. Primary school was particularly awful, comprehensive school was slightly better but I just felt so out of place there having come from a tiny school of less than 400 pupils to then be amongst over 800.

After school I then had the Monday morning work anxiety. I would be ok on Sunday until about 5pm and then I would begin to worry about events that would take place at work during the week. Again I was the target of two bullies unfortunately both were my boss and when one left the business the other one jumped right in and took their place. I loved my job and was good at it but it did absolutely nothing for my mental health.

So now after years of Sunday night anxiety its ingrained in me and I can never sleep or settle down for sleep very easily on a Sunday evening. So when it happened this Sunday I just shrugged my shoulder and thought oh well I’ll sleep Monday. Yet when Monday came around the same thing happened no sleep. I put Mondays lack of sleep down to having bloods being done on Tuesday morning. Its always a drama getting blood out of me. It was it took 2 people three attempts. I’ve got a lovely blown vein on the back of my hand. 

Tuesday was also dramatic as our washing machine broke down, well died to be more accurate. It was about 5 years old and had been a really good machine – washing machines don’t seem to last very long in this house. Probably due to the dogs stuff that fills the waste pipe with sand. I have a Rug bag  which is what horse owners put their horses rugs in to stop all the dirt etc going into the machine – its a bit like a lingerie bag for horses lol! A new machine was ordered and set up for delivery the following day. We can’t be without a machine when we have two elderly dogs who have accidents.

So when I lay tossing and turning last night I presumed I was anxious about the new machine being delivered. I wasn’t remotely anxious I just couldn’t drop off to sleep and if I did drop off I was only staying asleep for ten minutes or so. Today I am exhausted three nights of very little sleep has destroyed me after being used to sleeping again. On all three nights out of desperation I have increased my melatonin, added in an extra amiltriptyline and then last night I toyed with taking my last diazepam which is my emergency pill for either the dentist or when my neck pain is off the charts. I don’t have the doctors until next week  and I will ask about an additional prescription of diazepam as when the neck pain is bad its the only thing that relives it.

Last night well technically this morning I didnt drop off until gone 02.30am , at 7am I received a text message to tell me that our new washing machine would be with us in 20 minutes. So bang went any chance of managing to sleep for a bit longer. Jay has gone back to bed. He can fall asleep pretty much whenever and wherever he wants. I am unable to do that and I am always terrified if I sleep during the day I wont sleep at night. So today I will push through until I can’t go on any longer. My plans of using my embroidery machine have gone out of the window. I am so out of it I’d be a danger to myself holding a pencil let alone using machinery. If I didn’t have a load of things being delivered today I would have crawled back into bed right now, regardless of not being able to sleep tonight.

Insomnia causes my pain levels to increase, my mood to plummet and makes me thoroughly miserable. I hate not sleeping because the knock on effects can last weeks. Its been so long since I have had a run of three nights that I had forgotten how bloody awful insomnia makes me feel. 

Fingers crossed that at some point this week I fall asleep before 2.30am!

Insomnia Cure? (and other stuff this week)

**I haven’t been paid to provide a review of this product, I have also not received payment for advertising this product. This is an honest review of a product where no gain be it financial or through goods etc has been made.**

 

If you live in the UK, use social media platforms such as Instagram or Facebook or  read the newspapers and haven’t heard of Lush’s new wonder product “sleepy” then where have you been? The print media has been full of gushing reviews for this product, autistic children who have never slept more than a few hours at a time were now sleeping a solid 8 hours, insomniacs were rejoicing. Doctors were claiming it was a breakthrough in the treatment of sleep disorders. Ok so I may have just made that last sentence up but you catch my drift. The media, including social media were full of praise for the product that was allowing the sleepless to finally get some sleep.

 

So desperate had I become for a decent night’s sleep. I wanted to believe the hype. The product isn’t cheap at £13.95 for a measly 215g, ( Link to Lush website here) obviously the cure for insomnia is priceless but for most people in the real world spending £13.95 on a body lotion that may not even work probably seems a little extravagant. I have repeatedly moaned on here about how since giving up the fags (cigarettes) I am no longer sleeping. Initially when I stopped the first two weeks were heaven, then after that I was having problems with dropping off to sleep and then staying asleep.

 

I have two types of insomnia, onset insomnia – where you can’t drop off and maintenance insomnia – where I can’t stay asleep. I don’t know which is more infuriating actually I do, its maintenance insomnia as that can happen to me within 30 minutes of falling asleep. I wake up and I am wide awake immediately and I can stay that way for hours. Onset insomnia is frustrating but I just get up and do something, read, have a cup of tea. I am currently in a pattern where one or two nights a week I am having trouble falling asleep. Every night I am waking up for several hours during the night. I knew the chances of Sleepy the Lush body lotion helping me be able to stay asleep was remote but at this point I was willing to give anything a go.

 

 

I can’t remember which day I ordered the body lotion but it arrived within two days which is pretty good for ordering a product online and not paying extra for a named day delivery, I paid for standard delivery. The packaging wasn’t excessive and it arrived in tip-top condition. I was looking forward to trying the lotion when I went to bed.

 

 

The colour is a little off-putting to me with it being a lurid purple. It really smells strongly of Lavender which is a scent known to aid sleep. I have tried dropping lavender oil on my pillow and using an oil burner in my room for an hour before going to bed in the past but it’s made zero difference. It also contains sweet Tonka bean but to be honest I can’t differentiate the smell from the lavender. As expected the product does feel gorgeous on my skin and a little goes a very long way. So now the £13.95 doesn’t seem so bad as it is going to take me awhile to get to the bottom of the pot. I applied the cream to my neck, back, arms and chest, all the areas close to my nose as it is the smell of the product that is going to help me sleep. I did also use it on my feet as they are dry with the change of the season. My skin did feel lovely the following morning, including my feet.

 

The first night was a raging disappointment, despite falling off to sleep easily (which was nice) I was woken up by the pain of gastritis and the sound of a dog pacing around downstairs on the laminate floor at 1am. Usually a dog pacing around downstairs in the middle of the night is not a good sign, it’s normally a precursor to a dog vomiting. When I got into the lounge I found Frankie who seemed very out of sorts and very shaky on his feet. He had been fine the night before so I was very concerned. He didn’t want to eat when I had a banana and normally he’d sit and drool for that. When I returned upstairs I noticed that he was having great difficulty climbing the stairs. I managed to get him into my room and onto the bed (thankfully he jumped up unassisted) and I put the electric blanket on hoping that heat would help whatever was causing the problem. My husband got up a few hours later, I was still awake having not gone back to sleep. Frankie was worse again so I explained to hubby what had gone on earlier. The dogs were taken out for a very short walk and the alarm was set so we would get up early and ring the vets once they were open.

 

I did finally manage to get a few hours sleep but it was a dreadful night and the quality was awful due to being stressed out over Frankie being ill. In an ideal world a product tester wouldn’t have all this drama going on.

 

Frankie went to the vets with Mr Myastheniakid at 09.30am, due to Frankie’s age (he is 11 this week, as is Willow) I had convinced myself that this was the beginning of the end. The vet said she felt it was probably a flare up of Hip Dysplasia (a diagnosis I have never been entirely happy with as he has only ever had one problem with his hop and that was over 10 years ago. Of course that diagnosis made pet insurance ridiculously expensive.) Or he has developed arthritis in his hip. Frankie was a very good boy at the vets allowing them to take blood but he wasn’t happy at having his legs moved around. He came home off his face on painkillers, he can’t take the normal medication metacam or rimadyl as he pees blood, so he had no NSAID just a painkiller.

 

 

Friday was an incredibly long day for me, hubby was late night meaning he wouldn’t be home until gone 9pm, so I would be dealing with a hallucinating dog by myself for the day. You could see Frankie was hallucinating as he was watching stuff that wasn’t there. Thankfully at about 2pm he went to sleep beside me and slept the rest of the day. Normally I am in bed by 7pm as sitting on the sofa makes me sore but that day I had to stay downstairs all day as I didn’t want Frankie injuring himself further by running down the stairs when Jay got home. BY the time Jay did come home the injection was starting to wear off and Frankie was more with it.

 

I applied the Sleepy body lotion that night and was out like a light, I did wake up about 3am and was awake for a few hours. Again my skin was loving the lotion and was feeling very smooth. So that was two nights out of two where I had no problem getting to sleep and where I didn’t wake up within the first couple of hours of dropping off.

 

Saturday morning it was clear that Frankie was in pain again, he was panting very hard, although he was moving better. When any of our dogs get an injury I try to treat them naturally by giving them Maxxiflex  a tablet that can be bought on Amazon (and again I am not being paid to promote or advertise this product and each dog may react differently to this product so please speak to your vet). After two doses of this tablet Frankie was completely back to normal, bouncing around all over the place and no heavy panting or showing any signs of pain. We kept him as quiet as it is possible for a Weimaraner to be quiet. By the time hubby came home on Saturday evening Frankie was jumping at the front door wanting to go out for a walk and he  leapt into the back of the car without any issues. For the previous 24 he had been unable to get into the back of the car and had been lifted by hubby onto the back seats.

 

 

Despite all the stress involved with looking after Frankie and having a Grandmother who was in hospital, I did remember to apply the Sleepy body lotion. I had the best nights sleep I have had in ages, I slept all the way through the night and woke up almost feeling refreshed.

 

Frankie continued to improve Sunday, his blood test results would be back on Monday which may have given us an idea what was going on with him, be it arthritis, soft tissue injury etc. He was so much better today, we were quite surprised he had improved so much in the space of 48 hours. We were still “attempting” to keep him as quiet as possible, we were just very happy he wasn’t in pain.

 

 

Sunday night I did the same ritual I had been performing since Thursday evening covering myself in the Lush Sleepy body lotion. I will be honest Sunday nights are a real problem for me at the best of times, I have had problems sleeping on a Sunday night since I was a child. I have always suffered from anxiety if there is a break in my routine, unless I was at home. So finishing school on a friday was fine as I would be at home but starting school / university / work on a Monday and the anxiety would stop me sleeping. Despite not working anymore and not having been in education for over 20 years, Sunday evenings are still angst ridden. Which means most Sundays I lie in bed for hours, sometimes until gone midnight before I drop off. This Sunday was no different, so the body lotion didn’t do anything at all for me, it was a tall order not even medication works on a Sunday evening.

 

Monday, Frankie was completely back to normal, following me from room to room, annoying his mum / sister and me! He really was feeling an awful lot better. The vet rang late Monday afternoon and I found out that Frankie had a soft tissue injury his blood work had shown this and the vet was very pleased at how well he was doing, although Frankie still has to take it easy for bit. Yeah the vet has clearly never owned a Weimaraner! Due to Frankie’s age and size (39-41 kilos) he has developed a heart murmur. The vet said you can hear that one of his valves is leaking but it is very mild at the moment. He then went into signs that I need to look out for which will tell us that his heart is starting to fail (although the vet never said this, it was a case any of these symptoms and bring him in but I am not an idiot and know the score). So our boy isn’t a spring chicken anymore but he’s happy as Larry as long as his pack is together and that’s all that matters.

 

Monday night – slept like a log, woke up at 3am was awake for two hours and then slept until 8am.

Tuesday night – dropped off really quickly but woke up at 3am and stayed awake until gone 6am. Then slept until 8am.

 

My overall verdict on the Lush Sleepy Body lotion, well it probably needs a bit longer really to give a really good review. However if you are suffering with onset insomnia not linked with anxiety, I’d say it was definitely worth a go as long as you are also practicing good sleep hygiene. If you aren’t I would suggest trying that first. If you have no problems getting off to sleep but suffer with maintenance  insomnia then I’d say don’t waste your money, unless you apply it when you wake up in the middle of the night. I don’t know if it would help at all but it is something to try. It does smell really nice and it leaves your skin beautifully smooth. An added bonus I have discovered is that it is quite good on acne, probably due to the lavender in it. I get hormonal acne on my chin and this has calmed it right down and made it not look so red.

 

Sleep and other fairy tales

When I gave up smoking (nearly 7 weeks ago) I thought I had discovered the secret of a good night’s sleep. Initially on giving up I was sleeping like a baby, I have never understood that expression as most babies I know don’t do the sleep thing! I was dropping off within 30 minutes of turning off my bedside light and then sleeping for a good 10-12 hours. It was bliss, my back hated it but I actually started to feel something I hadn’t felt in years….refreshed.

 

Fast forward four weeks and the problems started, I also noticed at this point how unhappy my joints seemed about staying in. The slightest thing was bringing on a subluxation or a dislocation. My feet were also regularly spasming forming almost a tight ball, imagine the top of your toes touching the sole of your foot. Initially I put it down to stress, we were choosing the new colour schemes for the kitchen and the lounge, that sort of thing will keep me up at night, worrying that I have got it right. Not sleeping or poor quality sleep always seems to effect the stability of my joints. Which is why it is so important that I get a reasonable amount of sleep of average quality. When I get neither the hours or the quality not only are more joints increasingly unstable but I also end up with increased pain levels.

 

I take Melatonin and an antidepressant called Mirtazapine to help me sleep and for a good year they have been highly effective. However in the last 4 weeks it suddenly feels like I have become immune to both of them. I never go to bed until I feel tired and up until about 4 weeks ago within an hour of taking those medications I would be out like a light (about 85%) of the time. So to suddenly go from them working to still being awake two to three hours after ingestion is just bizarre. It’s also incredibly frustrating.

 

Many doctors don’t get it when you speak to them about lack of sleep or lack of good quality sleep. This is especially true if you are chronically sick, it seems that if you aren’t working and don’t “have” to do anything due to illness, lack of sleep really shouldn’t bother you. I have had this from doctors myself, it wasn’t until I was effing and blinding, crying hysterically that my gp got how desperately at that moment I wanted and needed to sleep. It shouldn’t have come to that as I had been talking about sleep issues to my hospital consultant and gp for months. It shouldn’t have been a surprise to either of them that I was now on my knees after months ( actually years) of ineffectual or absent sleep. Now when I complain about my lack of sleep I am immediately listened to. Maybe it’s the thought of the horrid, angry, crying Myasthenia Kid turning up in the waiting room that prompts such a rapid response.

 

At the moment I am soldiering on, I don’t want to get involved with doctors at the moment. Especially after Julys appointment and the hemifacial spasm (or I’m a neurologist and I will make it up as I go along) diagnosis. I am fed up with the whole of the medical profession at the moment. This is quite a typical response from me after a shitty appointment, I withdraw. My confidence has been knocked and I don’t feel I could advocate properly for myself if needed. I have found when you are chronically sick you need to be at the top of your game when dealing with any medical professional or all sorts of shenanigans can take place. You know meds being withdrawn, stupid suggestions made etc etc. At the moment it is better that I ride this out, regroup and then decide what I need to do next.

 

The joint instability is really bugging me at the moment, yesterday I battled my left hip all day. I could feel it grinding against the socket every time I moved. It kept subluxing and then popping straight back in again. There was no particular movement which was worse than any other. This meant I had zero ways of avoiding it, other than lying completely flat, which I was not prepared to do. Not after spending so much of my life last year horizontal. Today I have had issues with slipping ribs, every time I bend forward the rib is slipping and hurting like crazy. It is a weird feeling, so now I am trying not to bend forward but sometimes you don’t have any choice.

 

My body is still wracked with muscle spasms and they really have got a lot worse over the last 6 months. My feet spasming have been a problem for years, it always used to happen at night when I had gone to bed. Now it happens day or night regardless of what I am doing. The spasms can be so violent they dislocate my big toe. There is nothing I can do to stop them, I just have to attempt to massage the spasm away or wait for it to pass. My thumbs are also starting to spasm and get stuck (not like trigger finger) clamped to the palms of my hands. These do quickly release by me pulling the thumb away from the palm and stretching it out. It’s a strange one and I know that it’s not helped by the current sleeping situation.

 

Sleep, such a natural thing to do but at the moment it seems to be nothing but a fairy tale. I’d have more chance currently of meeting three bears in my house eating porridge than having a decent night’s sleep.

 

* * *

Breaking news on Saturday 16th September I actually had a good night’s sleep and dropped off quickly. I will probably go back to not sleeping from tonight!

And then it went straight back to not being able to drop off and lying awake for hours in the middle of the night.

Side effects

Last week was a bit manic by my standards, a gp appointment followed by a trip to hospital for my caffeine infusion. Add in visits from friends and a surveyor to look at the damage a water leak had caused (thankfully none but there is cosmetic damage as part of a wall had to be removed) it was too much for me. Most of these events occurred before Thursday’s trip to hospital, so when I wasn’t feeling well on Thursday I put it down to doing too much.

hole-from-leak-repair

The caffeine infusion was a bit of a nightmare as my veins were not playing ball. If I am tired and cold my veins tend to hide and I knew that my blood pressure was low, so I was constantly drinking to try to give it a boost. After nearly a litre of oral fluids I managed to raise it to 112/83, I have no idea what the starting point was but I would hazard a guess of between 90/60 – 100/70 both of these readings although considered in the normal range make me feel rank, I feel better the closer I get to 120/80. By the time the infusion had finished it was reading 125/85.

 

The department was exceptionally busy and this wasn’t the day for a cannula insertion to take longer than the IV caffeine takes to administer (2 hours). The staff that have experienced my veins before now tend to run away, which means it takes ages trying to convince someone else to give them a go. What was more irritating was the nurse that had the second go, wouldn’t listen to me. She was one of those nurses who just ignores what the patient tells them and carries on regardless. Three failed attempts later she decided that a glove filled with hot water might be a good idea. In the end I had five different people attempt to gain IV access, it was a naval doctor who got a vein on his first attempt. However by then he was discussing with me why I hadn’t got a port to make life easier for them and me.

 

I had already discussed this with my neurologist, whilst he was performing the occipital nerve block injections (GONIs). He isn’t actually my doctor anymore having moved departments but is often in the unit where my infusions take place. So when I know when my next infusion will be I email him so that he can do my injections. The headache nurse that did them before doesn’t do them the way he does and I find his are much more effective. The upshot of the port conversation was that I wasn’t having the infusions regularly enough, the risk of infection and the fact that they hadn’t called down the vascular access team. Believe me that is only going to be a matter of time.

 

I did manage to run into my PoTs consultant as we were leaving the unit and I asked him about the possibility of starting melatonin due to my sleeping problems. As it was just a quick check on me to see how I was doing he asked me to email him to remind him. There are such good doctors at the hospital, who have no problems with patients emailing them when they have concerns. He is the doctor that writes the prescription for the caffeine infusion each month. I email him the week before to remind him and he emails me to let me know he has done it.

 

The day after a caffeine infusion are always a bust, I need to rest all day due to the travel involved and all the stimulation from the lights and noise. Friday I spent the day lying on the sofa, I put down not feeling great to the caffeine infusion and the explosive diarrhoea I had experienced at 1am (for over an hour). Initially I put the shits down to a stomach bug but having thought about it, the caffeine infusion can act as a bit of a laxative and maybe it was that as after the one hour-long bout I didn’t go again.

 

Saturday I was floored by vertigo and my heart kept doing funny beats, where it goes slow and then returns to normal speed. I felt so ill that all I did was lie on the sofa under my heated throw. I took some stugeron (travel sickness tablets) and that did ease it quite a bit but I was very limited with only being able to lie down, using my chromebook or phone was difficult. My blood pressure was also feeling low, I didn’t measure it, I rarely do now as I know what my symptoms are, plus it was upstairs and there was no way I would manage to get it. I ended up crawling into bed at around 6pm because the stugeron had worn off and the room was spinning. I looked ghastly, white as a sheet with big black rings under my eyes.

 

Sunday followed the same pattern, woke up feeling rough despite sleeping like a log. Now along with the low blood pressure, vertigo, funny heart beats and generally feeling like crap I had developed wheals on my face. I also felt extremely low like I could burst into tears at any moment. I put being low down to feeling so awful. It wasn’t until the late afternoon I put the pieces of the puzzle together.

 

When I saw my gp on Wednesday I had told him that I hadn’t had a proper nights sleep since the end of November. I had either not been able to get to sleep at all or slept for one or two hours and then spent the rest of the night awake. This sleeping problem was then triggering anxiety, an increase in pain levels and being bad-tempered. When I don’t sleep I find that my normal aches and pains are amplified by a factor of 100. This then makes me anxious and then continual levels of high anxiety can send me spiralling into depression. Having been severely depressed previously I didn’t want to go back there.

 

For about a year I have been taking the antidepressant mirtazapine (15mg) to help me get to sleep. Initially it worked wonders but over the course of a few months it was no longer working. My gp agreed with me to increase it for a month to help me get some sleep. I started taking the increased dose on Wednesday night, it worked beautifully I was falling asleep and staying asleep. However the start of me feeling really rough coincided with increasing the medication. After a quick search on Google it was obvious that the mirtazapine was what was causing the problems. Side effects listed included

  • Vertigo
  • Low blood pressure
  • Palpitations
  • Rash
  • Changes in mood

 

And they were just a few of the side effects as there were many listed. So I dropped the dose back down to my normal 15mg on Sunday night to see what would happen. If I still had vertigo etc on Monday then I would contact my gp and see about stopping the mirtazapine altogether.

 

Monday morning however I woke up with my eyes very swollen

 

allergic-reaction

 

allergic-reaction-2

In these photos the swelling has come down considerably. My under eye area had been very itchy since Thursday which I had put down to dry eyes which is something I suffer from anyway. Monday morning I really had to stop myself from scratching as I would have scratched until I bled. I dosed myself up with antihistamines and then waited to see if the vertigo started again. The vertigo had been coming on 3-4 hours after waking up, so I bided my time before pronouncing a vertigo free zone. Thankfully the vertigo hasn’t come back since dropping the dose back to 15mg, my blood pressure is back to its low but normal state.

 

My gp rang me by chance on Monday and I managed to miss the call. He let a voicemail saying he had received an email from my PoTs consultant about starting melatonin and had written me a prescription for it. I rang the surgery back to pass on the message I had dropped the mizatrapine back down to 15mg due to the side effects I was suffering.

 

Tuesday morning there was no swollen eyelids which was fab and I had slept well due to the Melatonin I had taken the night before. I have been sleeping all night and feel more rested than I have done in a very long time. I still have fatigue but it’s no longer at the level it was when I wasn’t sleeping. I don’t know now if the mizatrapine caused the swollen eyes or if it’s something I have eaten. It could be anything at all as I can react to stuff and then the next time I have it there is no reaction.

 

So now I am back to my normal level of crappy health after four days of feeling truly awful and almost being confined completely to my bed due to the vertigo. At least however (touch wood) so far there seems to be no issues with the melatonin.

Blind Panic

By the time this blog post is published hubby and I will be up and getting ready for our trip to The National Ehlers Danlos Unit in Bath, a good two-hour journey to a hospital that has no parking. I am particularly looking forward to hubby losing his cool whilst trying to find a place to park.

Last week I was unable to write a new blog post so took the easy way out and re-blogged a piece from last year. I hate doing that but if I hadn’t there would have been nothing at all. Last week was filled with massive bouts of insomnia / painsomnia (if you’re not familiar with that term it means being unable to sleep due to high levels of pain) add in getting my hair cut on the Monday and a trip to the dentists on the Wednesday, I was good for nothing.

I can’t lie I have a terrible phobia of the dentist, which is bad when EDS has really done a number on my teeth. Apart from my front teeth every tooth in my head has a filling, my front teeth are losing their enamel and are also crumbling. I should be a regularly attending patient but three years ago I stopped going due to my health being bad and never arranging an appointment to go back. The dentist that I had built up a good relationship with, that knew about EDS and would listen when I told her to stop has left to work in the private sector. If we could afford to see her, I would but we don’t have that kind of money, so I am now having to “break in” a new dentist.

The last appointment I attended had been on my birthday, it didn’t go well as I was so tense I could barely open my mouth and he seemed not to believe me when I told him he was hurting me. Not a great start when all he was doing at the time was examining the condition of my teeth. I learned from this appointment I needed two fillings as I had developed large cavities in my rear molars. One on the right side and one on the left, the cavities were so large and deep they could be seen on the x-rays he took. You would be correct in thinking that I was not looking forward to getting them sorted out.

Before I left the appointment on 1st November I went through with him that I needed a local anesthetic without adrenaline, one with adrenaline will cause me to face plant when leaving the dentist’s chair, as one previous dentist found out many years ago before I had my diagnosis of EDS and PoTs. Due to getting my diagnosis at 37, it means I have endured more than my fair share of painful dental procedures, with dentists shouting at me that I “couldn’t possibly feel anything” because I had been given local anesthetic. It’s not only dental procedures that have been plagued by pain but also small procedures such as having part of my toenail removed and a lumbar puncture. Until the diagnosis I got shouted at a lot by the medical profession, simply because they didn’t believe that the local anesthetic they had injected wasn’t working. Now although they acknowledge that anesthetics don’t work properly they underestimate how long it will last for.

I knew in my heart I was going to be in trouble yesterday when the dentist administered the injections for both fillings at the same time. I wanted to pretend it was going to be ok and that it was a situation where it was mind over matter. The first filling went ok, although I really could have done without the running commentary of what he was doing. I spent the whole of the first filling trying not to vomit which is my normal feeling when I hear the dentist’s drill. I really didn’t like it when he told me that the next bit of equipment was going to vibrate a lot making my tooth feel like it was going over cobbles. Another wave of nausea hit me when he told me that he was removing the “soft stuff, to get down to a good hard base”. I wanted to tell him, I really didn’t want to know but as I had his hands in my mouth and the dental nurse sticking the suction device to my tongue constantly, he wouldn’t have worked out what I was saying anyway.

Filling number one went off near perfectly, this was a good dentist experience, other than the running commentary. I was a perfect patient apart from the hyperventilating at the start and gripping the armrests until my knuckles went white. I didn’t find my happy place, which I try to do when stressed to the max during medical procedures. I am pretty good at meditation and can drop off during MRI scans because I just go into my head, the dentist is a different story coloured by so many bad experiences.

I was pleased, the dentist was pleased but it was short-lived due to filling number two. I should have said something or made some sort of guttural noise (as you do when the dentist has your hand in your gob) when he blasted the tooth with cold air and then stuck the metal prong into it. I tried to convince myself that I was imagining the sharp stab of pain. Concentrating on my breathing, I braced myself for the drill, trying very hard not to panic.

Within seconds of the drill hitting my tooth, I entered what can only be described as a state of  blind panic. Until yesterday I had presumed that the state of blind panic was down to a weak mind, an inability to control one’s fears when faced with them. I have a fear of heights yet know that if my life depended on it I would overcome my fear, I really don’t like daddy-long-legs or spiders yet will deal with them if I am alone in the house. I am scared of them but I would never describe it as a phobia. People tend to throw the word phobia around quite a lot but I can say hand on heart that my “fear” of dentists has now developed into a phobia. Yesterday I experienced a state of blind panic, where I couldn’t think clearly nor see the danger I could have potentially put myself in. I know now that it is nothing to do with self-control or a weakness of mind and I unreservedly apologise to those people I have doubted in the past.

As soon as the drill hit my tooth, I had immense pain (I know my pain threshold for dental procedures is considerably lower than my normal pain threshold) without thinking I grabbed the dentist’s drill and threw it out of my mouth. I immediately sat up and had the dentist not put his arm across my chest I believe I probably would have attempted to leave the room via the window opposite me. It all happened so quickly that there was no thinking involved, I just wanted the pain to stop and to leave the chair. The dentist was really freaked out but didn’t lose his cool with me. He did say “never do that again, it’s so dangerous, you could have really hurt yourself” in a very quiet voice. I apologised and then burst into tears, not my usual tears which are quiet and restrained but full on chest heaving sobs where I could barely speak. The dental nurse gently rubbed my arm and dried my eyes. I cried so much that the shoulders of the top I was wearing were wet. When I later looked at myself in the car on the way home, I resembled something like Alice Cooper with mascara all down my face.

I think at this point the dentist didn’t think I would allow him to continue but rational Rach walked back into the room. As long as I had adequate pain relief I would be able to continue. I had told him on 1st November that local anesthetic wears off quickly with me and he would only have a small window of opportunity to get the job done. I guess sometimes they don’t believe their patients and need to see it to believe it. I wish they would take what we say as the truth because if he had, I wouldn’t have had to go through that.

I often joke that it’s been a good appointment if the dentist still has all his fingers, I guess now the joke will be it’s been a good appointment if I haven’t grabbed the dentist’s drill or tried to escape the chair mid appointment.

The dentist was a little surprised when I could feel the third injection go in, that part of my gum should have been numb but it wasn’t and proved the point that the original injection for the second filling had worn off. He waited a few minutes before beginning work again. I told him before he started that I would sit on my right hand so that should the urge to grab the drill come over me I physically couldn’t. We agreed that should I feel anything I was to raise my left hand and he would stop. This was the system I had in place with my last dentist and it had worked well, although I have never had to sit on my hand before. But then I have never ripped a dentist’s drill from my mouth either.

After all that drama the second filling went off smoothly. I left the dentist’s without face planting but by the time I got home I needed to just crawl into bed. Today I feel the same but my back is so sore from having so many days in bed lately that I am hanging on for as long as possible before returning.

I don’t have to attend the dentist until March 2017 and that is to see the hygienist, my teeth still need cleaned. I am apprehensive about it as it seems all the nerves of my mouth are on the outer edges of my teeth. At least the anxiety of the dentist’s appointment and the recovery time needed after this little jaunt out have stopped me thinking about my trip to Bath. every cloud eh?