Thursday, 27 April 2017

Trainspotting (or a bit of a cock-up by me)

You know your life is a bit sad when you manage an almighty medication cock-up and see the immediate silver lining as being “well at least I have a blog post for next week”. Such were my first coherent words to my husband this morning after a night of sheer hell. All because I fell asleep ridiculously early and then forgot to take my medications, one of which is morphine.

I take morphine twice a day as a 12 hour slow release tablet. Before morphine I couldn’t get out of bed and had been stuck there for the majority of the time for several months. This was thanks to a dr who decided it would be a fantastic idea to have me walk the length of a hospital corridor. Whilst I managed it and may have seemed ok to her, the following day the repercussions were felt throughout my body. I had a flare up of bursitis in both hips, plantar fasciitis in both feet, my knees throbbed and my back felt like I had been trampled by a horse. I worked my way through every other non opiate painkiller before both my doctor and I conceded defeat, there were no options left. At 37 I wasn’t prepared to spend what will hopefully be a very long life in that amount of pain on a daily basis.

In all the years I have been taking morphine (for the pain caused by having EDS and the early onset arthritis that I developed because of it) I have never missed a dose. Over the last 6 years I have on occasion been a few hours late with no problems. I have always attempted to educate those who read my blog (if they don’t understand) the difference between addiction and dependence. An addict uses drugs to get high, someone who is physically dependent on morphine is using it to relieve pain. I have never got high and if you bumped into me in the street you wouldn’t know I took morphine.

However the results are the same for the addict and those physically dependent on a drug, if they miss a dose. The body goes into withdrawal. I am now 12 hours past the time I realised I had gone into withdrawal and I still feel like shit despite taking my morning meds. I am hoping tomorrow I feel better and my body will be more settled. Let me also tell you this, as long as there is breath in my body I will never miss a dose again.

I wrote in last week’s blog post that I went to the doctors, I was exhausted for the rest of the day. At 18:30 (yes I do know how rock and roll I am) I went to bed. It was too early to take my night time medications which I take between 19:00 -20:00, so I thought to myself, “no worries I will take it later”. I then promptly went to sleep, which I never expected to do. I thought I would listen to the radio and then take my tablets after The Archers had finished at 19:15. I didn’t hear The Archers, in fact I don’t remember hearing much of anything I just conked straight out.

I woke up at 21:30 drenched in sweat, now there is nothing unusual in that, I can suffer from reactive hypoglycemia. I even worked out in my head that the night sweat would be in line with it happening within 4 hours of eating. I was so tired I just rolled over and went back to sleep again. I then proceeded to wake up at 22:30, 23:30 00:15 01:30, 02:15 and then finally at 03:00am. Each time I woke up I was absolutely drenched in sweat feeling both boiling hot and freezing cold at the same time. On each awakening I was also feeling more agitated, panicky and nauseous. I thought I was coming down with the flu or something. I had also had to change my pyjamas 3 times and turn my duvet over twice as it was soaked through. I was still at this point blaming reactive hypoglycemia but knowing in my head that the time frame for this to occur had passed.

It wasn’t until around 03:20 when Willow knocked my pill-mate (box that divides pills into days/ mornings/lunch/ tea/ evenings) off the bedside cabinet and I turned the bedroom light on to put it back, that I realised Wednesday evenings pills were still sat in their compartment. I checked my mobile phone to see what day it was. My first thought was “shit, no wonder I feel so awful” then it was “what the hell do I do?” I was 8 hours past the normal time of taking them but 4 hours away from when they should be taken. I really didn’t want to mess up the times I take my meds. So I opted to take 10mg/5ml Oramorph and 10mg slow release (from a larger dose) out of my morning meds, to see if it would stop the withdrawal I was experiencing.

I tried to go back to sleep but I was still hot and cold at the same time and dripping with sweat. I decided to get up and have a cup of tea in the hope it would make me feel better. As in the half hour I had been tossing and turning I’d had to get up twice for a dump. (I know I am such a lady but that’s what opiate withdrawal does to you and it’s not pretty.) Jay was up when I got downstairs and I was in such a state I could barely speak. I was feeling really nauseous, agitated and angry. I was just praying that at some point the morphine would take the edge off. But as luck would have it my stomach was on a go slow and absorbing my medication really slowly.

At 6am I felt like I had the full-blown flu, I was sweating buckets and still feeling like I was burning up whilst be freezing cold at the same time. The nausea was getting worse and I was convinced I was just going to puke all over the lounge floor. I was counting down the minutes until 7am when I would be able to take my morning tablets. It took until 10am for me to feel anything like human again, even then though my pain levels were really high and I was exhausted.

For the remainder of the day I felt pretty grim, body aches, no energy, I felt really tearful and out of sorts. All day long all I could hear in my head was the song from the film Trainspotting Lust for life by Iggy Pop, which did make me giggle. Especially when I would catch myself singing it every now and again. I went to bed really early again but set an alarm on my phone to remind me. I was so determined not to go through the same thing again I couldn’t sleep until I knew I had taken my pills.

I have a set routine normally when it comes to taking my meds, normally if I go to bed early I set the alarm on my phone so it wakes me up. That night I was so tired I couldn’t even think straight. Also I am good at setting the alarm on my phone and then just turning it off when it sounds and not taking my meds. That is what normally happens when I fall asleep early and this is what has happened all the times I have taken them late. Jay would normally come in and check that I have taken them but he was also shattered that night and forgot. He also hates waking me up as I can be thoroughly evil when woken. Thrashing around thinking I have been attacked or being verbally abusive due to being semi conscious. So it’s hardly a nice thing for him to have to do.

I am now forcing myself to stay downstairs until just before 19:00 so that I don’t fall asleep before I take my pills. I never, ever want to end up in that situation again . Even attempting to put into words what my body felt like doesn’t even come close. It took 24 hours for me to feel fully back to normal and for my pain levels to come down to normal. Mixed in with feeling shitty was also the anger at myself for forgetting to take them in the first place. I don’t mind if I make myself sicker than normal for a few days due to enjoying myself but to make myself sick through something entirely preventable made me seethe. The old negative self talk really kicked in, I didn’t have a nice word to say about myself. It was just so incredibly frustrating.

So I shall leave you with the track that has haunted me ever since Iggy Pop’s Lust for Life

Thursday, 20 April 2017

Zebras not Horses

There is something fundamentally wrong with a medical system that leads those  who are training within it to believe that rare doesn’t happen. In chronic illness circles we often refer to ourselves as Zebras, which is in reference to the medical school phrase “ if you hear hoofbeats think horses not zebras”. It is to teach doctors that not every patient they see has a rare medical condition but has it gone so far in the other direction that they now see “rare” as a never event?

There was a question posed on a social media group I am part of over the bank holiday weekend around this subject. As you can imagine it provoked a flurry of responses. All of us come together in this group as we are suffering from rare conditions, perhaps our viewpoint is skewed because we are surrounded by “rare” conditions? I don’t think so, these groups contain 1,000’s of members based in the UK alone. Where newly diagnosed people join all the time. I am beginning to wonder that the figures used to ascertain the number of people diagnosed per year or the number per thousand diagnosed isn’t accurate. Possibly it’s because of better technology or testing is now available and we are still basing these figures on the number of people diagnosed with a condition before these better more reliable tests became available? Whatever  the reason behind the inaccuracy some “rare” conditions aren’t actually that rare, they are massively under diagnosed and that is another source leading to inaccurate statistics.

Reading patient UK over the weekend, I saw that the number of people diagnosed with the rare autoimmune disease Sarcoidosis per year was 3,000 (the population of the UK is estimated at just over 65 million - ( source ) now I am crap at maths so can’t do all the percentages for you but you’d have to agree 3000 new diagnoses per year in a population of 65 million is quite small. Yet I know 3 people with this disease, not through social media but in actual real life. Now obviously there  will be statistical anomalies, there always will be. However there are plenty of conditions that some doctors still class as rare yet aren’t, they are simply under diagnosed. What is even more frustrating is how simply some of these conditions can be diagnosed, crazily some can be diagnosed without the need for expensive tests, EDS hypermobility type and PoTs just being two of them.

When I first raised the possibility of EDS and PoTs with my old gp, I was told that EDS was too rare ( estimates at this time was 1 in 5,000 and would have been picked up in childhood, I was 37 and PoTs simply didn’t exist. He informed me quite confidently that everyone's heart rate increased on standing. When I tried to argue with him that I wasn’t talking about a 15-20 bpm increase but up to 80 bpm, he told me that wasn’t possible, despite all the data I had captured on my blood pressure monitor whilst performing a poor man’s tilt table test, proving otherwise. He simply couldn’t get his head around the fact that rare doesn’t mean it never happens and nor was he educated about the existence of PoTs. Instead he was happy to go along with the label already given to me as somatization disorder.

So many people are ending up with a psychiatric label instead of dr’s just admitting that they don’t know what they are dealing with. We have moved away from doctors listening to the clues their patients are giving them and now have a situation where they are relying on expensive tests for what is known as a “gold standard” diagnosis. If your condition doesn’t fit with the medical textbook then it is completely dismissed as a possibility. We have moved so far away from understanding that rare means it will happen but not often to thinking that rare doesn’t exist. It means that doctors are no longer seeing a patient with an open mind or  realising that diseases/ conditions don’t read the textbooks they themselves are taught from.

I was lucky, I only had to battle for a year once I had worked out what was wrong with me (after countless hours searching on google, reading medical papers, joining patient forums etc) to get the test - a tilt table test, that would prove what I had been saying was indeed correct. It took paying for a private consultation to get the diagnosis of EDS hypermobility type (and even with the change in classification I still have EDS). However there are many other patients out there that have been desperate for a diagnosis for years being told that there is nothing wrong with them and that their symptoms are all in their heads.

The whole point of the saying “when you hear hoofbeats think Horses not Zebras” is to ensure that overzealous medical students don’t overlook the common conditions in the race to diagnose something rare. It doesn’t however say “if you hear hoofbeats always think Horses because Zebras are like unicorns and don’t exist”. Zebras are mentioned in the saying because although it is 9 times out of 10 more likely to be a horse than a Zebra, the odd Zebra will be seen during your medical career.

The problem of rare not happening becomes even worse if you're like me when you only tend to do the rare (or possibly massively under diagnosed) conditions. In 2015 I was told by my then consultant that I spent too much time on the internet looking up syndromes to have, this was after telling him I was feeling very unwell (much worse than normal) and that I knew something wasn’t right in my body. Reluctantly he ordered some blood tests to placate me, at the time I was concerned I may have PCOS (poly cystic ovary syndrome). What the blood tests found was that my level of prolactin in my blood was too high (it’s a hormone that is produced by the body when we lactate / breast feed or it can be because you have a pituitary gland tumour). I never did get to the bottom of why my prolactin levels were high but a few months later another blood test showed that I had abnormally low luteinizing hormone. That is the hormone that is needed to produce eggs from your ovaries. It can indicate premature ovarian failure, unfortunately due to me then having a spontaneous cerebrospinal fluid leak investigations went no further. I was too unwell to be worrying about what my ovaries were doing when my head felt like it was going to explode on sitting up or standing. So in the space of a year I had two rare(ish) conditions on top of EDS and PoTs (the luteinizing hormone being low could have been due to the raised prolactin.) Now who says lightning doesn’t strike twice? In my family we only seem to do rare or rare presentations of common conditions.

I have been lucky in the last few years, that 99% of the doctors I have seen have understood that rare can and does happen. I have only had an issue with one dr in the last two years, someone who was supposed to be an expert yet within a few seconds of me being in the room it was clear that he wasn’t. Now when I come across those situations I don’t argue with them, I just do my dumb blonde act. There is no point trying to educate a person like that, as their mind is closed off. You are but a meer patient and have no knowledge as far as they are concerned. I suppose you could say that I pick my battles now. I don’t have the energy to waste on fights that I have no chance of winning. I now change doctors (when it is possible) or see my gp to explain what has gone on, to try to ensure that I don’t have to see that dr again. I am lucky, many people I know don’t have that kind of support from their gp and everything is a battle. I don’t take it for granted though as with my gp leaving back in February I don’t know what kind of support I will get in the future.

Thankfully on the day of finalising this piece I saw a new gp and the appointment went very well. I finally bit the bullet and decided after several days of horrendous back pain (which I have bored you all stupid with) to book an appointment. The upshot is I have to go back tomorrow (today for those of you reading this) for blood tests to ascertain if my inflammation markers are elevated plus I haven’t had any bloods done for about a year and they like to see what’s going on. The gp is also organising for me to have an x-ray of my back as it is just so tender to the touch, that I yelp and leap out-of-the-way when even just light pressure is applied. I have to go back once the x-ray has been done.

Thursday, 13 April 2017

20 Things about me

As it is the Easter holidays and here in the UK the weather is glorious for a change, I thought I would just do a short blog post today. So here it is

1.I am 43 years old but I am staying 40 until my 50th, if anyone asks!

2.I am married to Jay and have been for nearly 17 years. We have been together over 20 years

3. I own three Weimaraners



4. Jay and I got married in Sri Lanka. Its our dream to go back one day.

5. I have Ehlers Danlos Syndrome hypermobility type

6. I also suffer from PoTs - postural orthostatic tachycardia syndrome / severe autonomic nervous system disorder

7. I have a degree in History.

8. I collect Emma Bridgewater Pottery and have also managed to get my husband into collecting it too.

9. On the 29th March this year as I accompanied hubby in the car on his way to walk the dogs, we came across a man playing the bagpipes in the carpark

10. I have been vegetarian all my life but this year have become what’s known as whole food plant based, which is essentially a vegan diet that is very low in oils / fats and no processed foods.

Tofu "chickenless" fingers

11. I love posting photo’s on Instagram and I also love seeing others photos. You can find me @racheljillmorrismcgee

12. Emma Bridgewater’s social media team have contacted me twice now for permission to use my photo’s in their social media campaigns

13. I am very lucky that I have a great group of friends that keep me going when things get tough. I know many people who have chronic health conditions that don’t have the support network I have so I am truly grateful for this.

14. I am currently teaching myself to draw after a break of nearly 30 years. It’s hard going as I struggle to grip a pencil for more than a few minutes at a time. So a twenty minute lesson can take me days to complete. I am really enjoying it though

15. I have been blogging since 2008 but didn’t  blog regularly until a couple of years ago. I have written more than 300 posts.

16. Despite being a blogger and talking about all aspects of my life I am quite a private person.

17. Hubby and I used to breed Weimaraners, Mollie has had two litters of pups with nine puppies in each

18. I love listening to the radio but I don’t listen to music channels. I love Radio 4, Radio 4 Extra and The World Service. On a Sunday night I will also listen to Radio 3 if they have a play on. The radio became a massive part of my life when I first became ill as I would spend hours in bed resting as I was so exhausted all the time. Radio was one of the few things I could do.

19. As I am a massive radio listener I am also a big fan of the Radio 4 soap The Archers about a rural community in the made up village of Ambridge.

20.  My favourite place on the planet, other than my home is Woodbury Common.

Woodbury Common

Thursday, 6 April 2017

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 .

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.