The Great Pretender

 

Sometimes when you are blogging you can feel like you are living a lie. There is a life  that I share with you through my blog and then there is the private life that I share with my nearest and dearest. Just recently I haven’t been sharing the whole truth with anyone.

 

As my regular readers will know Mr Myasthenia Kid and I have been through some pretty traumatic times of late. We lost one of our beloved dogs just before Christmas, then my Grandmother passed away, then my dear friend Pam passed away and then a school friend passed away. At the time it felt like I was just coming up to the surface to catch my breath and something else happened. There was no time to process anything at all. I knew that it was affecting me as there were days where all I would do was cry but I also knew it was having other effects on my mental health.

 

I have always been a really anxious person, I have spent years  in therapy learning how to do CBT. The problem this time was no matter how rationally and logically I could see what I was getting anxious about was ridiculous, I still ended up diving down the rabbit hole. I was waking from what little broken sleep I was getting in a state of absolute panic – usually clueless as to what had set it off. My anxiety was reaching proportions I had never experienced before. I felt constantly as if I was in flight or flight mode, all the time pretending to everyone around me I was ok. I didn’t see the point of bringing up my anxiety because I knew it was irrational and there was nothing for Mr Myasthenia Kid to fix. I just thought I would try to soldier on. At some point it had to get better right?

 

I tried bringing up my anxiety with my hospital consultant. I explained to him what had been going on and he responded “well it’s early days, give it a few more weeks and see how you feel”. The problem was he didn’t realise that if I am bothering to bring something up in an appointment it has got to the point where I can’t cope with whatever the issue is anymore. I don’t bring up all the different things that are wrong at every appointment, as we’d be there all day. I only bring up the most pertinent issues. If I am bringing up anxiety, it’s a big issue. Especially with my previous issues with mental health which are almost 20 years ago now.

 

Although the hospital consultant never meant for me to take it this way, I am sure, I felt like he told me to pull myself together and stop making a fuss. So I continued to solder on, with the trip to Birmingham only a week away I knew I had to hold it together. My anxiety was going crazy, I was barely sleeping but I just had to keep going because it would settle down, it would get better. The problem was it was just getting worse. I wasn’t sleeping and every waking hour was filled with fear over the slightest thing. I had permanent butterflies and I was close to tears constantly. Anything at all was making me burst into tears, which wasn’t me.

 

Last week it all came to a head. On Monday after my fall I kept bursting into tears. Initially I put it down to banging my head and the stress of the boiler not working. However as the days went on I was still crying at the drop of a hat. I had to face facts that things were not settling down, I was feeling worse than ever. Jay had noticed that I had become incredibly quiet and continually distracted (staring off into space), to the outside world it was still business as usual but even that was becoming hard to do. I am a great pretender but I was even beginning to struggle coping with the outside world. I had started to withdraw from my friends and just hadn’t bothered to message them as I just couldn’t cope with the thought of having to maintain a conversation and pretend that I was ok.

 

I managed to get the Duty Doctor to ring me as all appointments until after Easter had been booked. When the receptionist asked what was wrong and I replied anxiety and depression, she immediately put me on the duty doctors call list. I am eternally grateful that she didn’t think that I could wait for a standard appointment. I wasn’t at risk of doing anything stupid, I wasn’t feeling suicidal, I just felt like I couldn’t cope with everyday life. The doctor rang me back in a few hours and I explained what had been going on. She was so kind and understanding, she didn’t make me feel like I was overreacting and that I should be able to cope. She told me most people struggle with one bereavement to suffer so many in such a short amount of time would knock anyone. I was prescribed diazepam to use on the days when the anxiety was at its worst, when I just couldn’t calm down. To help me sleep she doubled my dose of mirtazapine.

 

I am slowly starting to feel a lot better, I seem to have had a break in the constant feeling of panic that I couldn’t stop before. I am still anxious but its at a more normal level. I am however exhausted constantly, my sleep is still hit and miss. Some nights I am out like a light but others I am still wide awake hours after taking my meds. I am also feeling very groggy the following morning and it’s taking me a bit of time to wake up. All of which I can live with if it continues to improve my level of anxiety as I don’t want to end up with the situation where the anxiety eventually causes me to become depressed.

 

So that you can appreciate how bad things had become I had got to the point where I had become frightened of using my sewing machine. Now anyone who reads this blog or knows me in real life knows that my life revolves around Jay aka Mr Myasthenia Kid, Mollie, Frankie and Sewing. I live to sew, when I am not sewing I am planning my next project. So for me to suddenly become frightened of my machine, was just bizarre. I can’t tell you exactly what it was that was frightening me but I just felt like a complete failure and that nothing I did was good enough…….a great pretender.

 

A few days after I had been on the meds I got my sewjo back. I decided to tackle my subscription box project which I hadn’t even had a proper look at since it had arrived at the start of March. It was really complicated but I just took it very slow and steady. This was the result

 

 

Dresden Plate design cushion cover in the newly launched Liberty Quilting weight range of fabrics.  I was so proud of it I posted it on the Sewing Quarter Fans page on Facebook.

 

Then on Sunday morning this happened

 

My Cushion was mentioned by Jenni Smith who works for Liberty of London on their fabrics. I was so chuffed, it has given me some confidence back again. So much so that I made another Dresden Plate cushion cover design on the Sunday.

 

 

So I am hoping that things just continue to improve now. I still get anxious, I always will but I no longer feel like I have to pretend that everything is ok. I (well we, me and Jay) have suffered a huge loss in a short amount of time and it’s ok not to be ok sometimes. You don’t have to pretend that everything is going well.

Being an Empath

When I first hear the terminology  Empath, I rolled my eyes and thought what new age, hippy, dippy shit is this? However the more I read the more I understood and began to realise that this explained an awful lot about me. For more information on Empaths please use this link from Psychology Today . If you Google Empath you will find some new age, hippy dippy shit as I call it. It’s often linked with psychic ability and that’s not what I am talking about, I am talking about the ability (or curse as I would sometimes call it) of absorbing the emotion of others or put another way feeling the emotion of others as if they were your own feelings.

 

When I was younger I often felt I was a let down, I was quick to become emotional, tears would flow freely and I would find it impossible to calm down. If upset in the morning, if I tried to speak about it again later on in the day, I would end up sobbing again. I felt like an over emotional wreck, no one seemed to behave like me. On more than one occasion and by more than one person I was told I was an embarrassment. Other people appeared stone like, unmoved by others pain or emotional state. It was really tough when I became a manager, I had to attempt to control my emotions 100% of the time, which for years I was crap at. I had to find places in work where I could allow my emotions to come out, safely where if there were tears no one saw, so it couldn’t be held against me. Emotion in the workplace is often seen as a sign of weakness and a waste of time / productivity.

 

It has taken me years to master having some kind of control over my emotions, so that I am not easily moved to tears.This is a double-edged sword as there are times where emotion needs to be released and I am unable to do so, bottling up emotion is never a good thing, Empath or not. It takes a lot these days to make me cry. It has been a conscious effort on my behalf to get to this position. No one takes a quivering wreck seriously because the years since getting sick have been such a battle and breaking down in front of doctors is a perceived admission of depression, it was imperative I got a handle on it once and for all. I have had to build a little wall around myself and to be honest it’s the best thing I have done for myself, as it’s exhausting being at the mercy of others emotions and having no control over it.

 

It is incredibly hard being an empath but I know no other way of living, so I will try to explain it the best way I can. I am highly sensitive to people’s moods and can tell when they are angry, happy, sad etc without them saying a word. Even if I know their mood has nothing to do with me (if it’s a negative emotion) it can make me incredibly anxious, I want to put it right. I naturally want to problem solve and get rid of the negative emotion surrounding the person. It’s also probably why I avoid confrontation as not only am I dealing with my own anger but the anticipated emotions of others.

 

If someone is talking about something emotionally painful to them, even if they appear emotionless I can become very tearful. I used to think that it was because what they were telling me was sad but that’s not it. Lots of things are sad but they don’t have me breaking down. It is almost as if I can feel the emotion that they are attempting to hide to appear strong. I see myself in their position and understand the emotional turmoil. If a person is a close friend of mine they don’t even need to be in the same room or at the end of a telephone. I can absorb the emotion through their words (now that probably does seem like some hippy dippy shit and that’s fine by me, if I didn’t live this way I would probably think that too!). The emotion won’t end when the messages stop, it will continue until I know that they are ok, that the storm has passed.

 

Through my work I have attended far too many funerals, many times I wouldn’t really know the person on more than an employee level but I would be overcome with emotion, even if very few people were crying during the service. The sense of loss, the collective grief would overwhelm me and make my heart heavy. After crying during a funeral I attended with my parents my mum joked (in a nice way) I could become a professional mourner, like they have in many countries https://en.wikipedia.org/wiki/Professional_mourning .

The thing is although it may seem like a great profession for me to those who do not share the Empath way of life, it would leave me exhausted and empty. Running on high emotion depletes me mentally, so that I can’t think straight for days. It also leaves me physically drained. I also cry at weddings, always having tissues handy is imperative for me.

 

I am really sensitive to anything to do with animals being mistreated or animals dying. I could never understand why when people told me about their pets dying, why I would be left a blubbering wreck. I always used to think I was over thinking things or being overly imaginative as I would start thinking about the animals last moments and the fear that must be consuming them. I hate stuff coming up in my social media feed that is about animal cruelty, once I see those images I can’t get it out of my head for days. I have had to stop all videos being on autoplay just in case any of them show anything that may disturb me as it won’t just be whilst I am awake that it upsets me but it can leave me with the most horrific nightmares.

 

As a child I was quick to make my mind up about people (and to be honest I still am), if I disliked a person it would probably be a decision made within the first few minutes of meeting them. I couldn’t tell you why I disliked them but it felt bad to be around them and I would need to get away from them as quickly as possible. I recall being at my Grandparents house when some friends of theirs popped in for a coffee. Within minutes of meeting them, I felt like I was being suffocated and made my escape out into the garden. I spent the rest of their visit alone waiting for them to leave. Thankfully I didn’t get into trouble for it, I think the consensus was that it was better that I left than was rude. Although it was pretty clear I couldn’t stand them.

 

There were situations where I couldn’t escape people (grown ups) and that would be emotionally exhausting and stressful. Imagine as a child being stuck with a teacher that you disliked and you innately knew they didn’t like you . Also  you knew that for at least the next year you would be stuck with them. One of my teachers in primary school was like this, I knew she was “fake” that she would do  things so that other kids loved her but the emotional vibe I got from her was vastly different. I can only describe it now as the emotionally energy she gave off was at odds with the person she was trying to portray. It’s hard as a child to be able to verbalise what you are feeling when you know that others just don’t get it. I wrote about this teacher in Square Peg, Round Hole – A Letter To My Teacher at the time of writing this post nearly three years ago I hadn’t heard the term Empath but through my writing you can see a little of what I described above about seeing through her. The sad thing is I desperately wanted this teacher to like me but what I have learnt over time is people like that don’t like anybody, they create the fake veneer because they feel deep down if people saw the real them, they’d be sunk.

 

It can be very hard being an Empath because other people’s emotions can overtake your own well-being. I have a strong nurturing side, I want to look after everyone and everything (apart from flying ants, daddy long legs, spiders and wasps, I am afraid they are on their own). That may seem strange to some with me not having kids but just because you don’t have children doesn’t mean you don’t have the ability to care and put others before yourself. I have learnt that from time to time I need space and time alone from everyone. I need time to recharge myself and take a step back from people before I become depleted of energy both emotionally and physically. I find some people can be draining to deal with, they take all your emotional energy and give nothing back in return. I have to carefully manage my time with those kinds of people or find myself empty too exhausted to do anything.

 

Being chronically sick and in chronic pain it is very important that I do what I can to protect my mental health. Anxiety and depression are common amongst those who have chronic health conditions and it is hardly surprising. I have suffered with both a long time ago but I am aware that at any point it could come back. On occasion my anxiety will get the better of me causing me sleepless nights, so my quiet times away from others is needed to rebalance myself. I was lucky in my workplace as due to the job roles I had I could balance my time effectively, using time where I could work alone to centre myself, blocking the rest of the world out and times where I needed the energy of others when I was in the thick of it. Now there is quiet times a plenty with no longer being able to work. I find crowds and large groups of people exhausting and over stimulating, so the quiet periods give me a chance to recharge.

 

It can be hard as an empath when you are with people you know that are suffering / anxious / angry but they are unable to verbalise it. Jay (hubby) tries hard to mask his emotions from me but I always know when something is wrong. I know now not to keep pushing for answers, he will tell me if and when he wants to. He tries to put on a brave face a lot of the time as he knows the extra stress can cause me to become very unwell.

 

Years ago Jay was going for an interview at my place of work. It was important, as all interviews are but this one was more so as it meant he could move to a store closer and thus save money from not driving 50 plus miles a day. Although he didn’t show it outwardly he was shitting a brick, as soon as he left for the interview I spent the next few hours with my head down the toilet throwing up due to nerves. I have never thrown up with nerves due to a situation I have been in but there I was be violently sick, for him. That’s how strange it can be being an empath, you can cope with your own emotions but the emotions of others can overwhelm you. I have never let myself become so flooded by another’s emotion since. Which is why I had to build that wall up around me. It also means that Jay never tells me when he has his end of year review as he knows I will be in a state whilst waiting to hear how it went.

 

Someone once told me never to be ashamed of wearing my heart on my sleeve but to be very careful as it made it easier for people to stab you in it and oh how right they were. Although I can take an instant dislike to people, I can also be taken in by them. Even if my spidey senses are telling me something is off about them (and I should really listen to that to save myself the heartache) I will ignore it and give them the benefit of the doubt. When I was younger I seemed to be drawn to people who needed fixed, something was broken in their lives and I could help them, although I didn’t see this at the time it was my mum that pointed this out to me many years later. The problem was that I would be used up and spat out when they became stronger. I have been incredibly hurt by several ex friends who have done exactly that. I now try to surround myself with people who don’t need fixing, that aren’t going to drain me of energy every time I see them. That doesn’t mean I won’t help if they have a problem or won’t be nurturing or share in their emotions. I will do all that as any friend would, it’s just I know that my “gang” of besties won’t use and abuse me.

 

It is very difficult to explain what it’s like being an Empath and I could probably write thousands and thousands of words on the subject and still not adequately explain what it is like. This blog post from The Minds Journal The Dark Side of Being an Empath explains it quite well if you ignore the new age, hippy dippy stuff about souls going out to play. It doesn’t feel like my soul has ever gone out to play, if we even have souls.

 

Anyway an odd one this week for you to digest but I always write about my life and what is true for me. Thanks for reading, have a great week.

 

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.

This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God’s green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger

 

It’s funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.

 

However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone’s feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.

 

I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”

 

The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.

 

I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said

 

“Good things come to those who go out and fucking earn it”.

 

An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.

 

As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.

 

He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.

 

”Nobody else on God’s green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.

 

Arnie and I part ways when it comes to the remainder of the quote – “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer’s that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.

 

Pain the type that EDSer’s live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?

 

Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.

 

The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.

 

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Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.

 

On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.

 

So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!

 

Entertaining and the aftermath

On Wednesday 20th January I held a Body Shop at Home Party for a few friends. It was a way of getting all the girls together and have a catch up whilst pouring over beauty products. It was held for entirely selfish reasons I needed some company badly due to my hatred of the month of January.

Yes I know I have said in the past I hate October with a passion but January also is a horrible month for me. December is usually quite social with family and friends visiting during the month but once Christmas and the New Year has passed the only person I will see for weeks on end is hubby. And although this is utterly delightful, talking to the same person in isolation does nothing for my emotional well-being.

January is the month when I first became sick, well sicker to the point that I could not sit up and take notice. This was the month back in 2007 when I developed ptosis and was wrongly diagnosed with Bell’s Palsy, it wasn’t until August that year that I got the tentative diagnosis of Myasthenia Gravis, which was then removed in 2009/10. This month is an anniversary month and always makes me feel quite low, next year it will hit double figures and I have no idea how I will wrap my head around it.

January is also the month my husband had his horrific car crash. He was hit by a drunk driver in a stolen car. Luckily he walked away with injuries that didn’t need hospitalisation. However his recovery took months, he had problems with his knees which had been rammed against the steering column and his lower spine, just from the force with which he was catapulted forward. He also had psychological issues with driving, losing his confidence and panicking whenever he saw oncoming headlights. The dogs were in the car at the time of the accident, they were covered in glass where a few of the windows had shattered all over them. Mollie has never got over the crash and shows signs of stress every time we travel along the road where it happened.

So as you can see January is quite a dramatic month for me, without adding in nearly losing Willow to Pyometra in 2014 and breast cancer in 2015. Her huge operation for her lipoma and cyst removal took place in December but that has already necessitated a couple more trips to the vets as she started to reject her dissolvable stitches ( which are taking an age to dissolve ) and her wounds opened back up.

So to get me out of my navel gazing funk I decided to hold the Body Shop Party and get to meet up with friends who I hadn’t seen in a while. There were only a few that could make it due to work commitments and illness. However this didn’t dampen the evening and actually made it a whole lot easier as it meant there was space for everyone and that emergency chairs weren’t needed. I had already ploughed my way through the catalogue and decided on what I was getting before the evening, so I didn’t do a lot of product testing. I mainly exercised my jaw with yapping to everyone who would sit and listen. I know that I can be full on when I haven’t had any company for a while. I talk at record speed and it can be hard to keep up with me. I tried very hard to rein it in. All that said it was still a cracking evening.

The party didn’t finish until 10:30pm on a normal night I would have already been asleep since around 8pm, yes I know I am just so rock and roll! So by the time I locked the front door and made my way up to bed I was desperate for sleep. My back had been playing up all week and all day I had been unable to bend without shooting pains down my leg, so by the time I got to bed I was in agony. Which I had been able to successfully hide all evening. Needless to say I went straight to sleep, normally after an evening like that I would be awake for hours, not last night. I didn’t wake up until 10:20am so that alone speaks volumes regarding how tired I was, when a normal night is 4-6 hours.

Thursday 21st January:

This morning I feel like I downed 20 pints, my balance is off, my eyes are dry, I am shaking, have a splitting headache and I am in a lot of pain. All I drank last night was diet ginger beer, my favourite soft drink, hardly the reason why I feel hung over today. This is the side of things very few people see. I am beyond exhausted, despite not doing anything other than sitting on the sofa talking. It seems crazy that my body needs to punish me so severely for a few hours of socialising. I love seeing people but I hate the recovery phase after. No amount of pain medication will get on top of the pain and due to sleeping in I missed my normal medication taking time of 8am so I was over two hours late taking them. The pain was what had woken me up.

There isn’t part of my body that doesn’t hurt, it’s a day I would describe as feeling trampled by a horse. I know I enjoyed last night but I am so exhausted I don’t remember much of it. Like a drunks amnesia the memories escape me at the moment. The evening was needed but I am beginning to wonder that the price may have been on the high side.

Friday 22nd January:

Yesterday despite my best efforts was a write off. I managed the sum total of three hours outside of my bed. The pain was too much the fatigue all-consuming and I just couldn’t function. My kidneys were also hurting from not consuming my normal amount of fluids (6-8 litres) it took all day of drinking copious amounts of fluid to get them to stop screaming at me. I got worse as the day went on, every time I attempted to get out of bed because boredom had set in (I really am the worst patient ever) my legs gave way. I ended up walking like a newborn foal. I get bored very easily, I was so tired that watching TV wasn’t an option I wouldn’t have been able to follow what was going on for more than a few minutes, reading, which I am doing a lot of recently wasn’t an option either as my eyes simply refused to focus all day. Even with my reading glasses on all I could make out were blurred words on the page. When I am tired to this point my eyesight just goes and all objects, faces etc are a blur. It is really incapacitating. EDS affects the eyes because it is muscles that are used to contract the lense and focus the sight. Tiredness means the muscles just don’t respond.

The term tiredness, fatigue exhaustion don’t really cover it. For those of you who aren’t ill, you can’t probably imagine what I am talking about. I am talking about a level of fatigue where your body just refuses to function. Walking to the toilet becomes an endurance sport, sitting up, holding a conversation is much the same. All you can do is lie down and sleep if you are lucky.

Today I am feeling much better, I am still shockingly tired and wracked with pain but I can function. I will have to continue to take it relatively easy for a few days and I won’t resume my normal levels of shittiness until next week. I can cope with that though as one evening with friends has been the tonic I needed. My spirits are lifted and after all there are only a few days left of this shitty month.

I am also being treated to a visit from a close friend this afternoon. Whilst the timing is a bit silly and will knock back my recovery from Wednesday night, I want to be like a “normal” person. To enjoy life and not limp from one social engagement to the next. Sometimes mental health has to take precedence over physical health. Without good mental health my body will not recover, I will not be able to push through or cope with the levels of pain I endure. I am a firm believer that the body needs to be treated as a whole, mental and physical health should be seen as one. Now I am feeling better mentally after the blip late last year my overall health feels much more in control.

A big thank you needs to go to those of my friends who attended the gathering on Wednesday night. To me it was so much more than just a get together, it was a life line.

A pill doesn’t always make it better

I hate the fact that these days a lot of people hold the belief that when you are sick you go to the doctors or the hospital, they prescribe you medication and voila you are magically cured. It doesn’t work like that, in fact it rarely works like that. Many conditions are treatable but that doesn’t mean they are curable. The medication merely keeps the worst of the symptoms at bay and at the end of the day the patient still lives with the condition.

A few weeks ago I wrote about the fact that I was suffering with depression, that I had started to take some antidepressants and was starting to feel better. When I said I was feeling better it didn’t mean the depression or anxiety had gone away, it just meant I was feeling better than I had been.

Depression doesn’t go away by taking tablets, yes your mood will lift but you can still be left with the issues that are causing your depression. I will always have depression, at some points in my life the symptoms will be very evident often times they won’t. It takes work and courage to face the things that are causing you to feel depressed. I am just on the beginning of this journey again.

When I wrote about how I felt when in the midst of depression it struck a few chords with people who read the post. I got some lovely feedback so I want to thank you for that. In my post Rainbows and Unicorns I described the feeling of depression….

 

When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn’t go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn’t shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that’s depression for you.

 

I will be honest I am still having bad days, where my chest aches with sadness and I just don’t want any contact with the outside world. I am lucky in the fact these kind of days are only occurring a couple of times a week. As my GP said when I saw him, bad days are normal and he didn’t want me to be so medicated that I was numb to all emotions. I don’t want that either, it is important to be present and to be able to feel things, be they good or bad. I am a little over emotional at times, I cried on Monday night when Jeremy Vine was saying goodbye to Strictly Come Dancing on It Takes Two, after being voted off in the dance off.

He couldn’t dance to save his life and hubby and I nicknamed him the praying mantis but he was so upset to be leaving the show it really moved me. The clip above is the best dance he did. Finally getting the score of 4  out of 10 from the judge Craig Revel Horwood. I am a massive Strictly Come Dancing fan (Dancing with the stars in the USA), hubby and I watch it together every week religiously.

I am a little more prone to weeping at the moment however I didn’t shed a tear at the John Lewis Christmas advert this year but oh my days did I sob due to their advert in 2013!! I still can’t watch it but have provided it here for you if you dare!

Here is this years John Lewis Christmas advert, not a patch on the 2013 one. Completely dry eyes in this house!

Going slightly off on a tangent as I am prone to do, (see above! lol!) I wont lie, I am a bit of a “Its fucking November” person when it comes to Christmas. I really do believe that Christmas is a December event only. It maybe my previous retail background that has caused this, Christmas would start for me in September, where I would plan my schedules for my department and Christmas stock would come into the store. I have done the majority of my Christmas shopping but that is only because with a fixed income I need to start in June such is the size of Hubby’s (Jay’s) family. Oh and another thing I hate is wrapping Christmas presents at anytime leading up to the festive season.

So the bad days are still with me, I had quite a wobble on Sunday. Sometimes things get too much, living this life with chronic illness isn’t easy and people’s belief that once the condition is diagnosed and starting to be treated, so you must be getting better really grates. I spent Sunday in my head, barely talking and ended up quite poorly, spending the afternoon in bed hooked up to my oxygen concentrator because I felt like I couldn’t breath. Those types of days get me down as you begin to panic that there will be more of them to come. I was anxious that I was going to have a Meniere’s attack because I was so exhausted (that can be a warning sign that an attack coming). Luckily it didn’t happen and once the breathing side of thing was more under control after a dose of mestinon, I slept the remainder of the day.

What gets me down the most at the moment I guess is the Menieres, the attacks have dropped to one per week roughly (I was unlucky enough to have two last week), but because I have been given medication to treat it, people assume that the attacks don’t happen anymore and are quite surprised when I tell them they are. I wish like countless other people with chronic illness that the pills did make the condition disappear but it doesn’t. The unpredictability of the condition also frustrates me, I feel anxious when I plan anything in case I have to cancel at short notice. Anytime I leave the house i have to take a bunch of medications with me just in case I have an attack, treating it early on in the attack, a bit like a migraine, means I get back in control and it shortens the length of the attack. If left too long the medication won’t work as effectively and I could be left with the spins for the rest of the day. I feel that it has taken over my life.

So I am slowly perking up, the good days outnumber the bad, bad days are still happening. However everyone even those people without depression have days where they don’t feel good mentally. That is normal, it is when the bad days outnumber the good that you need to seek help.

Mental health organisations in the UK that can give you immediate help:

The Samaritans if you find yourself needing someone to talk to, the Samaritans will provide it without judgement. I have used them myself in the past and I can not praise them highly enough.

These are links to Mental Health Charities that can help you with information and support.
Mind
Sane
Together
Rethink Mental Illness
Young Minds – this Charity provides support for children and young people with mental health problems. It also has a help line for parents to assist them to help their child.

Help is out there, if you need help reach out to one of these organisations.

Rainbows and Unicorns

I am going to let you in on a secret, I don’t shit rainbows or unicorns. Nor do I manage to spend everyday with a grin plastered on my face. Life with chronic illness is not something I tend to smile about and yet again it seems the old disability porn meme is doing the rounds on Facebook. The one that says “the only disability in life is a negative attitude”. I would love just one of these idiot posters to spend 24 hours living my life and see how positive they feel.


I have been staring into the abyss for a while now, for a few months I have been trying to kid myself that my mood would get better, that I would indeed get a good nights sleep and things would improve. I have practiced every self-help technique I have ever been taught but currently I seem to teeter between a feeling of raging premenstrual syndrome (ANGRY RACH!) or sadness, the kind that makes your heart ache. I would love to be melodramatic and say I have spent days in tears, I haven’t, I don’t have the energy for it. I did have a couple of days of easy tear shedding a few weeks ago when hubby was on holiday and that was only after I confessed to how bad mentally I was feeling.


I have written about my battles with depression before, I had smugly thought that I had won and I would never end up back there. How wrong I was. Since August I have faced a battery of testing, a muppet of a consultant (the one that told me I was spending too much time on the internet looking up syndromes to have) and a new diagnosis to add to my ever-growing collection of the ones I already own. It’s funny how the diagnosis or a new diagnosis can send you closer to the edge than you’ve been in a while. 


The absolute icing on the turd cake that is my life, was finding out that my driving licence had been revoked due to the diagnosis of Meniere’s disease. Despite the fact I get several hours notice of the attacks because they aren’t under control I am deemed no longer safe to drive. It grinds my gears (pun intended) that I know that there are many people out there driving who haven’t informed the proper authorities of their medical conditions. I know the DVLA are very hot on vertigo / blackouts now due to the terrible tragedy last year in Glasgow, where a refuse lorry driver crashed into pedestrians killing six (more info here). I understand why I am not allowed to drive, it doesn’t mean I have to like it.


Lack of sleep has also had a detrimental effect on my mental health. I haven’t slept properly since 2011 when hubby had his accident ( a drunk driver hit him, when he was on his way to take the dogs out). The crash also left me with a lot of anxiety whenever he has to drive anywhere alone, oddly enough his journey to work doesn’t bother me, just everything else. I am a bag of nerves whenever he leaves the house and make him ring me when he arrives at his destination. 

Pain has also been a major cause of lack of sleep, I tend to get breakthrough pain because I don’t move around very much whilst asleep (as in changing positions). Up until recently I was lucky if I got 4 hours at a stretch most nights, once every few weeks I would sleep 10-14 hours and end up feeling worse than after a 4 hours sleep. Not sleeping drags you down, it is terribly lonely being the only person awake for hours on end. Waking up at 3am means it is a very long day and there is no evening for me as I am back in bed by 7pm and most nights asleep by 8pm. 


All these things combined meant that no matter how hard I tried I just couldn’t lift my mood. I am a consummate actress around friends and family, no one would really know how bad I felt inside because for the short time I spent with them I could pull off my usual wise cracking self. If anyone suspected I wasn’t my usual chirpy self it could be passed off as feeling rough or being in pain. However I knew things were getting bad when I no longer really wanted to talk to anyone outside of my family. I have a habit of withdrawing deep inside my head when things are tough. I don’t make an effort to socialise because I can’t be bothered to pretend that everything is ok. I put off visits from friends and basically become pretty shoddy at staying in contact with people. Even with hubby I start to get very quiet, mostly because I don’t want to snap at him because the issue isn’t him its me. In the grand scheme of things what does it matter if certain jobs haven’t been done by my self-imposed deadlines? I become frightened to speak as I may give myself away. I hate feeling like a burden to people. Over the last few months I have felt more and more that I couldn’t ask for help until one day I couldn’t suppress it any longer.


When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn’t go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn’t shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that’s depression for you.


Thankfully I have identified the signs early, probably the earliest I have ever done so. I would class myself as mildly depressed, there are no thoughts of suicide or self harm but eventually they would have surfaced if I had let it go on much longer. I have visited my gp, who I think would have guessed this was coming as on the last two telephone conversations with him I have ended up in tears. He has placed me on an antidepressant that is known for its sleep inducing qualities. I have only been on it a few days but I am already experiencing better quality sleep, the kind where you wake up and feel like you have slept. My mood has lifted a little, which could have been caused by sleeping better as the medication isn’t supposed to reach its full effect for 7-14 days. My gp did say to me he felt with a few decent nights sleep it would take the edge off and it has. When you haven’t had a refreshing night’s sleep in 4 years you forget what it’s like. I have been waking up in the morning and not feeling groggy. I can’t remember the last time I felt like that on waking.


I have to go back and see the gp in a couple of weeks, a basic check to see how I am feeling and if the medication is working. I have been told to ring him immediately if things aren’t going well. Things are ok, is all I can say at the moment. I am hoping in a few weeks I will be able to say things are good.


It’s very difficult when you have a chronic illness to be able to address depression by the normal self-help means diet and exercise. Mobility issues and pain mean all but the gentlest of exercise is completely out for me. My diet is very restricted and when you feel depressed you can end up bingeing on junk food in an attempt to make yourself feel better for the short amount of time you are eating it. At the moment I am not feeling like eating (probably the new medication) nothing makes me think “oh I fancy eating that”. I am still hungry but the desire to eat has gone, which for me is good as I don’t want to end up bingeing all the time. I have to eat three times a day due to the Betahistine so I force myself to eat then. The pleasure of eating has temporarily gone and I am ok with that.


One of the main reasons I shied away from asking for help from my gp was the stigma I have faced in the past with having mental health issues on my medical records. Too many doctors when I was struggling for a diagnosis saw the issues from ten years earlier and decided that my illness was psychological and not physiological. I didn’t want that happening all over again however there came a point where I realised I couldn’t keep trying to soldier on. Nothing was going to change unless I got help. 

So I urge those of you who are struggling right now to ask for help, there is no shame in saying you need assistance. Chronic illness is a lonely world to inhabit, many of the things that get me down can’t be changed but I can learn to adapt to a new normal.