A trip of a lifetime

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

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

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

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

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

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

The Dentist

It’s 13.20pm on Tuesday 17th October and I am here stressing to high heaven because at 14.15pm I will be in the dentist’s chair. Like every single person I know with EDS, I hate the dentist. I am only going today so that I don’t get kicked off the list and end up without a dentist. The last time I was there it was a nightmare, which you can read about here in my post Blind Panic  . I am still really angry that he didn’t listen when I told him local anesthetic wears off on me very quickly. He obviously thought he knew better. I ended up chickening out of the hygienists appointment because I was having panic attacks a week before it was due. So today could be very interesting.

A few months ago one of my back teeth disintegrated when I was eating some chocolate. I wouldn’t have minded but I was nibbling at it with my front teeth when the back molar (upper right 7 I found out this afternoon) decided to just fall apart. I know the dentist will want to fuck about with this tooth, be it a crown etc but he will be told by me that I want it pulled if he wants to play with it. I don’t do root canals or anything other than a straightforward filling with my teeth. The reason behind this is I have a shockingly low pain threshold when it comes to my mouth. Anywhere else on the body I am an absolute trooper but I never get adequate pain relief when they are messing about with my teeth. At 43 I believe I am entitled to call the shots when it comes to my teeth.

I know some of the low pain threshold with my teeth is caused by the abject terror and stress a visit to the dentist causes me. Me and Dentists have never got on, probably because for a lot of my life EDS hadn’t been diagnosed, it didn’t seem to matter to the dentists treating me if there were tears rolling down my face and I was screaming whilst they were carrying out treatment. I was to be ignored because I’d had anesthetic, so I couldn’t possibly be feeling anything. The problem was I felt everything. Now the association is set in my  mind that whatever the dentist does will mean pain to me. My last dentist was brilliant, very patient and understood EDS. She had got me to the point of not being absolutely terrified, which was quite a step forward. Unfortunately she has left the NHS and now practices privately. I am hoping today that I will be able to find out where as I need to build my confidence back up and hopefully get her to have a word with the guy that is my dentist now. I am hopeful that due to me almost ripping the drill out of his hand last time that it was enough of a frightening experience for him as it was for me that he takes me seriously. But it’s been a long time since I went…………..deliberately.

There has been a lot going on here, decorating, a trip planned and me being much more unwell than usual. I had a very bad flare up of Hidradenitis suppurativa which then had an impact on my hemifacial spasms (**sarcasm) no really it affected my MG like symptoms really badly, (I have been exhausted, very weak muscles and ptosis coming on within 2-3 hours of taking mestinon). I have been on mega doses of antibiotics trying to avoid any surgical intervention as this is the worst flare up I have ever had. I am still not out of the woods as the antibiotics are due to finish shortly and the abscesses although have reduced in size are still there. If I could get out of going to the dentist today (not due to fear) I would have as I am utterly exhausted again today.

I am going to have to go and sort myself out ready to leave. The time is rapidly approaching for my appointment. I will let you know how I got on when I get back.

* * *

The good news is I am still alive the bad news is I need a filling on the tooth that disintegrated. It was quite amusing as the dentist didn’t remember me, so I gave him a brief overview of our last appointment. Which he laughed and then checked the notes, saying  “oh my goodness yes, I don’t remember it but it’s all here!” . I explained to him again that I am an absolute wuss when it comes to dental work. I told him that I believed a lot of it was psychological due to years of painful dental treatment when I haven’t been believed when I have told the dentist I can feel whats going on. That I now have a deep anxiety about the dentist and that I had chickened out of going to the hygienist in March because I had started having nightmares two weeks before the appointment.

I still don’t think he 100%  appreciates how very difficult it is for me to attend appointments just due to the fear but he was so gentle today, a completely different bloke than last time. Not that he was rough last time but he had a different attitude. Half way through the appointment he said “You can’t have adrenaline in your injections can you?” to which I nodded as his fingers were in my mouth. He said “ I remember you now, you faint if you have the adrenaline” again a gurgle and a nod for a reply from me. Obviously there aren’t too many of us that actively request no adrenaline.

I have to go back the second week of November for my filling, which is fine by me. It gives me a chance to chill out a bit after this appointment. I am utterly drained of energy now. I was better this time on the lead up to the appointment probably because there is currently so much else going on, I couldn’t sit and focus on it. Of course in three weeks I will have to go through all the stress again knowing I am going to have to have a filling but that’s life.

On the way home Jay said “I just don’t get why you have such a low pain threshold at the dentist and why you get so anxious, you’ve had lumbar punctures and all sorts of horrid procedures done without adequate pain relief” I agreed but as I have said I think it is a lifetime of painful dental treatment that has left me like this. He knows how hard it is for me to go and was telling me how brave he thinks I am for going. If I could get away with not going I would but I can’t having had dental abscesses before I need to be on a NHS dentists list.

Being a grown up really sucks sometimes.

Odd Ones

A few weeks ago an incident happened that has happened many times before to me on social media, I was hit on by a complete stranger. They seem to all go to the same school of charm, as the same phrase is always used. I was told yet again “Btw (by the way) your profile photo is really sexy”. This always makes me roar with laughter as my profile photo is usually one of my dogs. I hate having my photograph taken and I rarely post photos of myself unless it’s of me with ptosis The men that use this phrase clearly don’t actually look at the profile picture they are sending this crap out to or they really do need glasses!

I suppose Frankie could look sexy if you were into that kind of thing LOL!

My husband had no idea how often this happens to me, I simply hadn’t bothered to tell him. I am probably like most women, so used to this crap that it really doesn’t bother me anymore. I might find it creepy some days but I usually send the person back quite a rude response and immediately block them so I can have no further dialogue with them. Due to my position as an admin on a Facebook group, I have to set my messages so that I can receive them from anyone. Facebook naturally filters them for me into people I am friends with, those messages go straight into my inbox and people I don’t know come up as message requests. Thankfully I can preview these without the other person knowing, so that should I wish to I can decline them.

However a few weeks ago I had the same issue with “your profile picture is very sexy” but this time it wasn’t a stranger, out of the blue. No this was during a serious conversation I was having with an admin from another group. I had contacted this admin as a favour as I had joined his group only to see that there was an ex member of the group I admin in there. This member had been removed due to his aggressive and confrontational / rude behaviour and I could see that he was up to his old tricks in this group. As a favour I thought I would give this admin the heads up. Oh how I wish I hadn’t, the conversation started up normally enough and then out of nowhere came the creepy statement. All respect I had for this gentleman left me right there, why would you do that ? and why on earth would you think that was ok?

Why is it that men seem to think that the internet is just another way to be pervy to women? What did this man, let’s call him Chris think I was going to say after he told me my profile picture was very sexy? “Oh thank you kind sir, let’s run away together?” At the time I just said “erm thanks the photo is of my dog's nose” I exited the conversation quickly after that and I am happy to say he hasn’t contacted me again.

Now if he did this to me and he barely knows me, literally we are in the same health issue group, what is he doing to women in the group he helps run? Women who he knows are vulnerable, to me that is the behaviour of a predator. Unfortunately it’s not the first time I have heard about a male admin or husband's of an admin taking advantage of their position to gain sexual satisfaction. It really brings it home to you that you should never blindly trust someone on the internet, I am always quite cautious but even I have had occasions where I have let my guard down and been punished for it. However it is usually females that take advantage of me, by monopolizing my time, asking highly personal questions and then when I tell them that I won’t answer that question I have had them get extremely nasty with me or make out that I am taking offence for no reason.

The male pervs I can deal with, as I say they normally get a special message back from me. It’s the females I find incredibly difficult to deal with, sometimes it can take me years to  stand up to them. I never divulge things I don’t want to, I won’t be bullied into that. I seem to attract the ones who are emotional vampires, who are in competition with me as to who really is the sickest them or me.  Anyone who knows me knows that I really don’t fucking care who is the sickest it’s not a game I play. They are the ones that only ever talk about themselves and when you look back at the messages you have from them you see that they rarely ever ask you how you are doing.

I write a blog, I give information away freely it’s something I chose to do.I also control the information that I share. I also understand that people will contact me as part of that. 99 times out of 100 I have no problem at all with the people who contact me and I am more than happy to help whenever I can. The downside is even though my blog audience is pretty small by the grand scheme of things and my page only has a hundred or so followers on Facebook. I do seem to attract more than my fair share of weirdos. I have been asked for money, I have been asked if I want to join an investment schemes but the ones that really get my goat are the ones that steal my time. They are the ones that message me incessantly for days on end, that claim to be big fans of my blog but the questions they ask prove time and time again they’ve never read it. They are also the ones that claim to know all about my illnesses, yet the things they say prove they don’t. I try so hard to be polite and kind to  everyone I encounter online but some people think that gives them the green light to walk all over me or to ask deeply personal questions. When I point out that I won’t answer the question and why, I am belittled through mocking apologies. Yet when I stand up for myself and tell these people to sling their hooks I am the one left feeling bad about it. I just can’t win.

Some of these encounters make me want to just shut down all my social media accounts and run away. But then I think to myself why should I be the one to suffer? All I have ever done with my blog is try to tell my story and hopefully help others who maybe at a different stage of the journey. The majority of my online encounters are lovely it’s just the odd one or two that leave me with a bad taste in my mouth. It’s the odd ones with a problem not me!

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.