Migraines the sneaky kind!

You may be wondering what on earth I mean when I say "Migraines the sneaky kind" up until last Wednesday, if I had read that I would have been scratching my head as well, because surely you know if you are having a migraine right? Well no not always, read on!

What I am referring to are migraines that disguise themselves as something completely different, so that they sneak up on you. Its not until its gets to the point where you are vomiting, avoiding the light (like some kind of vampire) and your usual pain medications arent working that you suddenly realise that what you are suffering from is a migraine and you've got so far into the attack that there is nothing left for you to do but ride it out.

On Tuesday 18th March 2014, I had one of these sneaky type migraines. I suffer with two kinds of migraines, classic migraines with an aura and Hemiplegic Migraines where I get no warning. With my hemiplegic migraines I wake up in the middle of the night with them.

http://www.webmd.com/migraines-headaches/what-is-a-migraine-with-aura this link explains the type of symptoms you get with a classic migraine with an aura.

http://www.migrainetrust.org/factsheet-hemiplegic-migraine-10913 this link gives a brief overview of the symptoms of a hemiplegic migraine.

I call them my sneaky migraines as when they start I don't know what they are. I am awoken from my sleep with sinus pain, severe sinus pain that goes into my front teeth. Over the course of a few hours the pain increases to the point where I feel like my head is going to explode. I self medicate with sudafed (a type of sinus decongestant), nasal sprays and rinsing my sinuses out with warm saline. Nothing stops the pain and it just keeps increasing, I start to feel sick and then the light aversion starts. This is then followed by a feeling of numbness in my face and right arm, sometimes spreading into my right leg. Then suddenly I have a lightbulb moment and realise I'm having a migraine!

 In 2009 or 2010 (sorry I can't remember the exact year) I ended up being taken into hospital for 24 hours because I was so ill with a migraine. When I was admitted I was wearing dark glasses and had my cardigan wrapped around my head to block all light out (and yes I looked ridiculous but I just didn't care!). The medics treating me were concerned I had meningitis or a bleed on the brain. All the tests came back clear, I was suffering from a migraine.

This migraine started in exactly the same way as the one on Tuesday night did. It disguised itself as a dry sinus infection. I was so convinced it was my sinuses acting up. So on Tuesday my sneaky migraine had fooled me for a second time.

I felt hideously embarrassed all those years ago that I had been hospitalised by a headache but then a migraine isn't just a bad headache, as so many people that have never had one seem to believe. A migraine is the kind of headache where you would do anything to stop the pain, even if it involved cutting off your own head.

So why didn't I recognise that it wasn't my sinuses but a migraine that was masquerading as such? Well I'm not alone in getting the two confused the link below states in one study of 100 people that believed they had sinus trouble over 90 of them had nothing wrong with their sinuses at all, they were suffering from tension headaches or migraines
http://www.webmd.com/allergies/sinus-headaches

This link breaks the study down further
http://headaches.about.com/od/diagnosis/a/ahs_sinus_mig.htm

I only discovered all this after my migraine cleared up around 13 hours after the attack had started. I was angry with myself for not recognising the fact it was a migraine and I searched the internet to find out if other people had the same sinus symptoms during their migraine attacks. I found a wealth of information about sinus pain and migraines but this only fueled my curiosity. I needed to know why the sinuses were involved, what was the mechanism behind this. I came across this site which briefly explains why the sinuses are involved
http://migraine.com/migraine-types/sinus-migraine/

As soon as I found out this information I shared it on facebook as I had previously discussed dry sinus pain with a few friends. It made so such sense. Sometimes my migraines that involve my sinuses aren't so dramatic. The pain is severe, but I'm not light sensitive. The attacks will still send me to bed and I will  vomit with them.

I could never work out how it was possible to be in so much pain with your sinuses only for it to magically disappear 12-24 hours later. During these attacks I would take decongestants and rinse my sinuses with warm water to no avail. I feel such an idiot! All this time I've had migraines with sinus involvement. If I had taken other pain medication I may have been able to reduce the attacks, rather than solider on thinking my sinuses were playing up again.

Im not new to migraines I've had them since the age of 8. Since that age they have been a mixture of classic migraines with auras and hemiplegic migraines with or without auras. By the time I was 13 years old my migraines were frequent and severe. I always vomited and I would always become paralyzed on one side of my body.

 I have a memory of my mum taking me to see my gp as she ( the gp) needed to see me during one of my migraines to confirm the diagnosis. At this age I was several inches taller than my mother and probably around a stone heavier. I remember her dragging me along the road, how the hell she did it I will never know but she did. In the doctors surgery I was diagnosed with migraine and given a prescription for pizotifen / sanomigran a drug used to prevent migraines. The doctor also gave me a soluble pain killer and made me drink it there and then. Bad idea as I decorated the treatment room with an exorcist type vomit. It was then that the doctor informed me that I was also suffering with transient gastroparesis due to the migraine. She advised me that as soon as I got my aura warning me of an impending migraine attack I must take my pain medications, if I waited the pain killers wouldn't work as for all intensive purposes my stomach would be on strike during the attack.

I am always amazed at how many Doctors and migraineurs that aren't aware that your stomach becomes paralysed during an attack. It doesn't seem to be very well known by either community, which is a dreadful shame as many sufferers could reduce the severity of their migraine if they took their pain medications as soon as the aura started. Obviously that only works if you get an aura, some people don't.

Over the years my migraine pattern has changed. As a teenager they were frequent and severe. Even though at that point I had identified a number of triggers ; emotional stress, cola, oranges / orange juice, halls menthol sweets, lockets ( a type of lozenge for colds), scampi fries to name a few. As I grew older the frequency of the migraine attacks lessened. I could now go years without them. However when I did get an attack the migraines would be in clusters so I would have 2-4 in the space of a week, knocking me sideways.

I also outgrew my triggers, I still don't cope well with menthol so avoid it, the only other trigger I have identified is emotional stress. From 2010 until 2012 I was migraine free. Unfortunately in 2012 I started on the medication fludrcortisone     (florinef) and the migraines came back in clusters. This was also a time of emotional stress which compounded the situation. When I stopped taking the fludrcortisone the migraines subsided but they were still more frequent than they had been in years.

I now manage to go several months between attacks. The last migraine I had was in November on my 40th birthday. It was a classic migraine with an aura. I've found with these type of migraines as long as I get my pain medications in quickly and can apply a hot water bottle to the back of my neck within an hour of having the aura I can limit the severity and length of the attack to just a couple of hours. On my birthday I ignored it, dosed myself up and tried to continue as if it wasn't happening. I had a couple of hours where I felt pretty ropey but I made it out to my birthday lunch and had a few glasses of champagne for medicinal purposes!

With my hemiplegic migraines there is no escaping them. They will not be ignored, I just have to ride out the storm. Its the nausea and vomiting I find hard to deal with during these attacks plus the pain is just off the chart. They leave me depleted of energy for days afterwards with several severe headaches following afterwards. Thankfully I spoke to my gp on Wednesday as the migraine was starting to subside and was prescribed three types of suppositories. Two kinds of pain killers and one anti emetic as I can not hold anything down during one of these attacks. So if you are like me during a migraine it maybe worth talking to your doctor about being prescribed suppositories rather than oral medications that will not be digested if you do manage to keep them down.

With all things medical that I discuss on my blog - I am not a doctor, what works for me may not work for you. Also if your migraines change or increase in intensity then you need to seek urgent medical advice. What you think is a migraine could be a whole host of other lot less pleasant conditions such as a brain bleed, a stroke or meningitis none of which should be ignored.

And yes Nurse Frankie was glued to my side during the episode in case any of you were wondering!

I should have said glued to my feet as he kept lying on them to ensure I didn't go anywhere!

Internet Forums / Facebook groups- where to get help when you're new to the world of chronic illness

Everyone needs support and questions answered by those in the position to give the information especially when starting out on your journey. Joining a supportive group is key to navigating around this strange new world.

I have been part of the Internet forum / facebook group (secret / closed and open) community for quite some time now. When I first became ill and was searching for answers they became my lifeline and a mine of useful information, not a day went by without me logging onto one of these sites.

I have seen the best and worst in these kinds of groups, so for the last year or so I have stepped away from many of them. Too many "secret" groups on facebook have ended up as peoples personal power trips banning members who dare to question their authority or  they have just turned into hate campaigns against individuals.

 Stepping away from the Forums outside the world of facebook groups was for a variety of reasons mainly because I just couldn't handle what was going on with my health and by ignoring the forums, I thought I could ignore what was going on with me. The same reason why I ignored my blog for so long. You have to admire my logic.

Its always very difficult when you are dealing with a situation when the reader is free to interpret your comment / question via the written word only. So much of what we interpret when speaking to another human face to face relies on body language and the tone of someone's voice. In the cyber world one missing word or misplaced capital letter can lead to a whole heap of trouble! Its trouble of the kind that I would rather avoid when I am dealing with my own problems and just looking for some support / advice.

I will be honest I've been kicked out of three secret facebook groups. I would love to tell you some lurid tale of why I was kicked out but I actually don't know the reason why other than the fact I was facebook friends with some individuals that the administrators on these groups did not like.  I found it quite hilarious at the time considering that facebook is supposed to be for users over the age of 13, however the admins of these groups seemed to treat it like the school playground, which is very sad when you consider the aim when creating these groups is to share information and support each other.

I would like to say that I am still a member of several private / closed groups. These are well run and not dominated by one individual. They have been created with the sole aim of helping and supporting the members of the group.

There is a world of difference between a well run Internet forum and a secret facebook group. Internet forums aren't secret for a start, there's no special status conferred on its members. Internet forums are not "invitation only". Internet forums also usually have active administrators who step in at the first sign of trouble eg Medical advice being given by someone who is not a Dr, bullying, religion or politics. Believe me nothing gets people stirred up on an American Forum than mentioning the Affordable Care Act or telling them that you have no religious beliefs! Ive never done that but I have enjoyed watching the drama unfold. When you don't get out much you don't get that kind of drama that is normally confined to social situations or the workplace!

 Facebook secret groups don't seem to apply the same standards as the Internet forums ( well not the ones I've had the pleasure of being kicked out from). I've watched far too many facebook administrators actually get involved in the mud slinging and then kick the victim out! Entertaining as it can sometimes be it does leave me feeling a little sad, we have so many things against us already and then we start turning on each other. It just doesn't make any sense.

Internet forums don't suffer from the same issues that the  facebook groups (all groups not just secret ones) tend to succumb to. With Internet Forums there are a larger number of members, so no one person can dominate the group and turn it into their own personal whinge fest. Many of the facebook groups I have stepped away from were dominated by two or three people, who seemed to decide if your question was worthy enough to be answered. I found when posting comments that if I didn't have their approval then my question would be ignored. If it happened just the once or possibly twice I could accept that no one in the group had the answer, when it happens on every question you post you tend to see a pattern. Such was the strength of these individuals if you didn't have a place in the inner clique you definitely felt the cold!

My experience with Internet forums has been completely different, people bend over backwards to help you. Even if someone doesn't have the answer to your question they will reply to your post, sympathise and suggest someone who might know the answer, who you can directly message.

On Internet forums I've had a mostly positive experience, yes I've seen infighting amongst members, there always seems to be someone who considers themselves the Alpha of the pack but I've also seen how quickly the dedicated teams of administrators step in to squash that kind of behaviour.

Also I like the way that you can report bad behaviour to the administrators of the Internet forum totally anonymously and feel confident that unlike facebook, the Admins won't tell the person who complained and then hold a long conversation about you in secret because they are personal friends. This is due to the sheer size of the forum membership, whereas on Facebook you are normally invited into these groups by your facebook friends. A successful administrator needs to be able to step back and see both sides without being caught up in friendships  / loyalties.

Due to the sheer volume of members the Internet forum doesn't seem to become engaged in  the "who is the sickest ?" game, I've seen this played out on facebook so many times.  When did being ill become a competition? Its not a competition I want to participate in. Everyone who suffers from any disabling condition be it visible or invisible doesn't then need to engage in this strange competition that seems to happen on these pages. It seems to be for some individuals a badge of honour to be the sickest, the one having the hardest time, one can never post without being reminded of how much worse it was for them due to a, b, or c. Believe me I know some people have a terrible time of it but since when have we been judged on how ill we are? What is it about facebook that seems to bring this out in people?

Some of you may recognise what I am talking about in the last paragraph,  some of you may think I'm a wicked, unsympathetic person. Hang around these groups for long enough and you will see exactly what I mean.

Due to the competition aspect that has evolved in some of these facebook groups other groups have sprung up, most of them containing the word Positive in their names. Having lurked on several of them ( I like lurking) it now seems there is a competition about who can be the most positive about their condition. Strictly no whining allowed on these pages. So what do you do when you are having a really shitty day and need to reach out to people? Sometimes positive messages just don't cut the mustard.

Does anyone think like me that things are getting just a little bit crazy? Aren't these pages set up for fellow sufferers who want help, support and advice? Why do facebook groups ( the groups that I have been involved in) seem to forget that?

Now don't get me wrong not all  facebook groups are like this, some are very well run, particularly those that are officially linked to charities. These tend to have clear messages pinned to their page to remind members what is and what isn't acceptable behaviour. Their administrators also seem to be much more responsible and proactive, they step in when things are getting heated. They will shut down conversations if things are getting out of hand and will warn members privately that their conduct is falling below the required standards of the community. They act in the same responsible manner that the Internet forum does.

For someone new to an illness a good facebook page / Internet forum can be a life line. It reassures you that you aren't alone, points you in the direction of good medical information and does not hold some members in higher esteem than others. Everyone is equal on these sites and everyone is there to learn together. No question is too stupid / silly and the members of the community are there to help you.

Two Internet forums that I hold in particularly high esteem are;

http://neurotalk.psychcentral.com/
this covers a whole host of illnesses / conditions, too many to mention individually and has a very good Myasthenia Gravis Forum. Without this forum  ( it was the very first one I joined) I would have been completely lost. This is the only Internet forum I use for Myasthenia Gravis. It was my mum who found this forum.

http://www.dinet.org/
Not only is this a wonderful forum but it has a wealth of information available for people who suffer with Dysautonomia ( Pots, OI and EDS) . It prides itself on keeping its members up to date with the latest medical research papers. This is the only Internet forum I use for dysautonomia.

Unfortunately I can't provide you with any links to Facebook groups as many of them are closed groups and you need to be added by a member of the group.
However I can provide you with the home page of Pots Pals UK which also has a facebook page.

http://potspalsuk.weebly.com/
This site provides good information for people with POTS in the UK and by joining (free) you can then access the facebook group should you wish to.

www.ehlers-danlos.org
A great organisation to join that has some brilliant fact sheets you can hand to medical professionals. It also has a message board / forum you can use.

These are the sites / groups that I would recommend. Ehlers-Danlos UK also has a presence on Facebook and Twitter.

Not all groups are badly run little empires its just Ive been around the block a few times since 2007!

What makes me happy?

What makes me happy may seem like a strange question or title for a blog post, for someone dealing with Ehlers Danlos syndrome, Postural orthostatic tachycardia syndrome, severe dysautonomia and possibly Myasthenia Gravis and all the pain and complications that throws into the mix. However I am happier now with life than I have ever been. Yes I live a life with some restrictions. I don't get out and about as much as I would like, I do lead quite a solitary existence but I am happy.

There are days where I am not happy, there are days when I would like to sit and cry shouting "why me?" but I learnt a long time ago that it doesn't get me anywhere and wastes precious energy. If I do find myself having ones of those days ( which are thankfully now few and far between) I accept it for what it is. Even people without health issues have days when they get the blues or worry about the future. Its normal and does not need medication to cure it.

So you maybe asking how did you achieve this zen like state? Firstly I'm not some new age hippie type that meditates for hours. There is nothing zen like about me. What I have achieved and I deliberately use the word achieve because its taken a lot of hard work on my part (without outside help) is acceptance. Acceptance that I can't work, acceptance that people that I thought were good friends turned their back on me when I got ill, acceptance that some people can't handle chronic illness and acceptance that the situation I am in is unlikely to change anytime soon. But hey there are always miracles!

For a long time before I got sick I wasn't very happy. The job I loved, was good at and had done for 9 years was got rid of by the company, I had to apply for a new job or face the prospect of redundancy. I got the new job but it wasn't the same and although I was good at this job as well, it didn't give me the same sense of job satisfaction.

Fast forward two years and suddenly out of nowhere I developed ptosis and crushing fatigue combined with muscle weakness. Being on my feet for 36 hours a week was killing me. I asked for help but little was forthcoming, I was rapidly discovering that disability in the workplace is simply unacceptable. For 18 months I struggled on doing a mixture of full and part time hours in a steadily increasing toxic environment.

 I felt like every area of my life was unravelling work and home. Days off were spent sleeping, house work, cooking fell by the wayside and landed heavily on my husband's shoulders. Its fair to say during this time I was deeply unhappy.

I will be honest and tell you that acceptance did not come about easily. For around 3 years after I left my place of work just driving past the building was enough to trigger a panic attack. I was very lonely, friends that had initially stuck by me either drifted away or started to abuse our friendship. Those who used my vulnerability and social isolation as a weapon against me were eventually after much soul searching discarded. I had no energy to deal with toxic friendships and I didn't have the emotionally strength to be picked up and dropped on a whim.

Because my identity was so caught up in who I was at work, I was lost. I felt useless and an unproductive member of society. I had to forge a new identity for myself, I needed to find my place in the world once again. Initially I started this blog as a way to get my thoughts and feelings out into the world, it became my silent counsellor. I started helping on disability rights issues on Internet forums, due to my own experiences I had become a bit of an expert on the equalities act. What I had found through my own experience was it maybe laid down in law but it doesn't mean that employers understand it, let alone implement it. I found that I wasn't alone in being cast out of the workforce and many others were struggling too. Helping them gave me a feeling of self worth and gave me back some of that job satisfaction I had been missing since I had left my place of work.

I started writing a novel which has been on hiatus for a few years now, but I am hoping to get back to it at some point. As I have said before my health isn't in a fantastic place at the moment and as I want to cultivate an audience for my blog I need to concentrate on this.

What I have found since becoming ill is material things no longer mean that much to me. I take more pleasure in simple things because I have the time to appreciate them. My happiness is no longer reliant on how well I do my job ( I'm medically retired), how much money I make, what designer items I own. That was a massive change for me as I have always had expensive tastes!

So what makes me happy now?

In no particular order!

Family:

When I was working family came quite low on my list of priorities. It sounds a terrible to say but I really did put work before everything else. Now family means so much more to me, without their support I don't think I would have made it through the last few years. My mum helped me so much during those first few years, coming up and looking after me, fighting the Dr's for me because I was too sick and too tired to stand up for myself. Travelling across the country taking me to specialist, shes done it all. My sister also helped me to adjust to this new way of living. She became ill a long time before I did and she became a sympathetic ear when I needed it. My dad has also taken me to hospital appointments, popped in to see me to check I'm OK and has been very supportive in my writing endeavours.

I love it when we get together as a whole family and spend time together. It doesn't happen very often as they live 60 miles away from me and I really can't travel. One of the happiest days of my life was my 40th birthday, when we all spent the day together. Its so relaxed and easy with them and great fun.

We talk on the phone, text and skype on a regular basis but actually being together beats all those things hands down. Everyday I thank my lucky stars that I have them.They make me very happy.

My Husband and my fur babies:

My husband is my best friend, in so many ways we are very alike and yet in so many ways we are entirely different. We adore one another and love nothing more than just spending time together.

When I was working we rarely spent anytime together, we were drifting along not appreciating what either of us had. When I got sick it would have been so easy for him to walk away from it all and continue to have the life he expected to have when we said our marriage vows. Instead he stood up and developed as a person, becoming more mature and even more caring.

I love spending time with him, he makes me happiest of all.

My fur babies are my everything. Two of whom I helped deliver into this world. Mollie, Frankie and Willow have helped me cope in more ways than they will ever know. In the dark times and there were a few in the beginning they were the only thing that stopped me doing something stupid. I knew if I was no longer around, my husband would not be able to work full time and look after them. They would end up being re homed which would break his heart all over again. I've spoken about how nurse Frankie looks after me in other blog posts. They all have different characters and make me happy in different ways. Without them my life would be pretty empty.

Friends:

Before 2007 I considered myself lucky, I had lots of friends and a couple of really close friends. When I left work it became crystal clear that some of these close friends were not who I thought they were. I had simply been a means for them to get what they wanted and now I no longer worked I was simply no use to them at all. That hurt me greatly, in all my life I have never treated anyone in that manner.

 My feelings about friends and chronic illness are not uncommon. On many of the forums I belong to I hear the same things over and over, that people have been "dumped" by people who they would have done anything for and the heartbreak it has caused.

I know that being my friend isn't easy, with me being housebound friends have to make the effort to visit me. I may cancel on you at the last minute due to my health or I may become ill whilst you are visiting me. To be my friend takes stamina and loyalty. Out of all those friends I thought I had, only one stuck by me and she knows who she is. I want to say a massive thank you just for being there for me, through the ups and downs.

Having a good friend in my life makes all the difference. When we get together we gossip, we put the world to rights, we share our problems, our dreams and aspirations. To do all this makes me feel "normal" again and not the odd one out.

Emailing 'A' :

There are some people in life you just click with and A as I shall refer to her is one of them. She found me lost and alone on a forum, she picked me, up dusted me down, gave me knowledge and the courage to challenge what the medical profession were saying. Although we've talked about it in our correspondence she really doesn't appreciate how much she has helped me over the years despite her own chronic health condition.

When I see that she has emailed me it makes me smile. Sometimes we go weeks without emailing each other but I know should I need her she will spring into action.

We've never met in person due to the fact we live on different continents. We've never talked on the phone or skyped. Ours is almost an old fashioned friendship of pen pals, thrown together by chronic illness. Thank you sweetheart.

Having a house full of people:

At least a couple of times a year my husband and I hold informal get togethers. Be it for a sporting event, a game of poker or just because we haven't had people over for a while. The guest list never changes its always the same ten or so people.

I love having the house full of people enjoying themselves. I wouldn't and couldn't do it all the time, each event causes me to have at least a week in bed! But its so nice for those few short hours to feel part of the human race and socialise with other people.

My parents home was always so warm and inviting as a child. We were always allowed to bring friends around, my parents had dinner parties or impromptu get togethers. It wasn't chaotic, it wasn't a party house  but guests enjoyed their time at my parents home and I guess that's what I try to recreate now.

My husband and I are currently sorting out our next shindig, again just a few close friends who enjoy each others company. It gives me something to look forward to.


So many things make me happy now, all the things listed above are things I either didn't appreciate before 2007 or didn't do before then. There are so many things I could add to that list like sitting out in the back garden in the summer sun, hearing the cuckoos on the common in April, seeing the first swallows of the summer, clean sheets! So many things that I just didn't take / have the time to appreciate before.

I feel I know who I am now and I realise that my identity doesn't revolve around my job role. I have come to accept the restrictions my conditions have placed upon me, I don't have to like them but accepting them takes the anger and resentment away. This takes time and each individual will get to that point at their own pace. I want to make it clear I don't go around with a fake smile plastered on my face. I can still be a moody bitch. I am Human and I still make mistakes.

Thank you for reading xx

Sleep and Chronic Pain part 3

Sorry this post isn't exactly how I wanted it to be. Its been a rough week and a humdinger of a migraine and recovery from it have hampered my blogging. So the post isn't completely polished but I hope its of some use to you.

I would just like to do a quick shout out to George Barron who is the author of www.myastheniablog.com, who kindly commented on my post about technical difficulties and has a link to my blog from his site. For those of you with MG his blog contains great information regarding medical studies and peoples stories about life with MG. Its well worth taking a look.

 I've been chatting about Chronic pain in my last few posts and suddenly  I became  aware that some of my readers may not know what the difference is between acute pain and chronic pain. Don't worry you aren't alone! I had to look it up myself to ensure that I had it right in my own head! My basic assumption was Chronic pain was something you had for a long time not related to any specific injury. I struggled when it came to acute pain so I did a bit of research.

This website has a great explanation of Chronic pain v acute pain
http://my.clevelandclinic.org/services/pain_management/hic_acute_vs_chronic_pain.aspx

So acute pain normally happens suddenly like stubbing your toe ( happens quickly and the pain subsides relatively quickly as long as you haven't broken something), after surgery, dental work, etc. By calling it "acute pain" doesn't diminish its severity, broken bones hurt, post operative wounds hurt. Its just acute pain lasts for a period of hours / weeks / months, up to depending on whose article / research you read 6 months.

When the pain you suffer from is moved from the acute pain status to chronic pain status, it again depends on what sites you read /  what research you've consulted and not forgetting when your doctor changes its classification. Chronic pain is usually diagnosed after 6-12 months. Long after an original injury or source of the pain should have healed. I've had back pain since I was 18 years old. This is classed as chronic pain, many years have passed since the original injury but the pain has not gone.

My chronic pain wonders up and down the pain scale. I am never in a position where I have no pain. On a good day it can be around a 2 or a 3. On a bad day it can be a 7 or an 8. There is never a day without pain and the same goes for nights.

I always find the pain scale quite inadequate to deal with describing pain. The language doctors use to describe pain is also quite confusing to me. They use words like is it dull, sharp, burning, stabbing. I remember the look of amusement on a junior doctors face when I told her my abdominal pain felt like I had swallowed a gorse bush.

The link between chronic pain and poor quality of sleep is well documented with many scholarly papers written on the subject. There are research trials taking place currently looking at using cognitive behavioural therapy to help people manage their pain and thus help them sleep.

I'm in favour of anything that helps chronic sufferers sleep better. Without sleep pain seems to intensify, we can become moody, emotional and function poorly during the day. The more sleep we don't get the worse we feel, a vicious never ending cycle.

I do have a problem with CBT being talked about as the great cure all. I found CBT very helpful when I suffered a major depressive episode many years ago, it helped me rationalise my feelings. I'm sceptical of its benefits when used with chronic pain. To me its like teaching Grannie how to suck eggs. If chronic pain sufferers haven't already developed their own coping strategies how the hell are they managing to function? Also how many of these researchers live with chronic pain, how do they understand what we go through every day and night? CBT has its uses but to me it smacks of "pain is all in the mind". Too many of us with chronic pain have been told "your pain can't be that bad, your smiling and talking" or " we can't find anything wrong with you" or " your pain can't be that bad". Adding a referral for CBT into the mix can make the sufferer suspicious that yet again they are being told their pain is in their head and its all "mind over matter".

Chronic pain sufferers use their minds throughout the day to distract themselves from their pain its a full time occupation. Which is why I think the nights are hard for us, there aren't the things going on at night as there are during the day. At night we are left alone with our pain. It either stops you going to sleep or wakes you up from it.

I don't have any magic cures or suggestions to help you. I really wish I did as I would like to get a decent nights sleep. Its important to remember when you suffer with chronic pain / sleep deprivation or both that you aren't alone. Seek support from anywhere you can, friends, family, medical professionals or the internet. There are some great support networks out there with people going through the same things you are. If you are in pain speak up don't suffer in silence!

having a few technical difficulties

I'm having a few technical difficulties with my blog.

You may have seen that there was a blog post that's been removed, its because blogger decided to publish only a small section of the post twice!

I've already lost the post once as blogger isn't playing ball. The post entitled what makes me happy will be published at a later date.

Sorry for any confusion!

Sleep and Chronic Pain part two

Whilst researching this topic I was disappointed to see that we really haven't moved on much scientifically in our ability to treat chronic pain and the sleep disturbances it causes. The same well meaning advice was trotted out in practically every website. Finding the answer to better sleep when you are in chronic pain is a frustrating business.

So what's the advice that the websites offer I hear you ask?

- Reduce your caffeine intake in the afternoon / evening so that you get to sleep.
That's the same advice they give anyone who is having trouble sleeping and isn't specific to those of us dealing with chronic pain. Reducing caffeine is a great idea but for me getting to sleep isn't the major issue staying asleep is.

- Make sure your bedroom isn't too hot or too cold.
Again I have to question what the hell this has to do with my sleep being interrupted by chronic pain? Quite often I will go to sleep with various heat wraps applied to parts of my body. All of them have an automatic cut off after 90 minutes. Without the heat applied to my rusty joints I would be in agony! I do like to sleep in a cool room and can't abide being too hot. But again the advice is meaningless to those of us with chronic pain.

- Make sure you develop a good night time routine.
What they mean by this is that you don't go to bed until you are ready to go to sleep. If you don't fall asleep within 15-30 minutes your supposed to get up again. This has nothing to do with chronic pain! Insomnia yes but chronic pain ? Most of us with chronic pain sometimes have to go to bed early / during the day ( when I say sometimes for me its every night. In a perfect world I would be in bed every evening at 6pm, 7pm at the latest). Bed is the only place we can get comfortable, support ourselves etc by making this off limits would cause some people to suffer more pain. Unhelpful.

-Make sure your bedroom is free from distractions.
Most people with chronic pain use what is known as a distraction technique. This is where we try and focus on something other than our pain be it a DVD, Music, Books, Texting friends. I use DVDs and have box sets coming out of my ears but I love watching and re-watching them. It needs to be something I like and something I can get totally absorbed in. I'm writing this blog post in bed to distract myself from the fact my back has gone into spasm and will only let me move around a tiny bit. Pain can have some positive outcomes its not all negative!
I have however implemented a new sleep routine, when I start to feel like I need to settle down and go to sleep I turn all electric devices off. The tablet, the phone etc all get switched off as from previous posts you know I am evil if my sleep is disturbed and it prevents me from checking my phone or tablet if it buzzes. I can then solely concentrate on the business of sleeping. The phone and tablet only get switched back on again when I get up in the morning or if I'm having a bad bout of insomnia.
I do have a guilty secret though! I can't sleep without the radio on. I listen to the world service, BBC radio 4 or BBC radio 4 extra. I find it soothing to hear constant voices and if I'm in pain its distracting enough to reduce the pain but not so distracting to stop me getting to sleep.
Many people with chronic pain find night time the hardest as there is nothing to distract them from the pain as they try to go to sleep. So listening to the radio is a great tip!

-Get some exercise during the day.
Unfortunately for some people getting some exercise isn't possible. For me exercise or any activity beyond the level I am used to is a no no! I know how much energy I have and I have to use it efficiently otherwise I end up stuck in bed due to a pots crash or I end up in severe pain.
I know its important for me to keep mobile and keep my joints strong but I also know I need to keep within my limits. If you can exercise however small the amount do it, if you can't don't stress over it. You know your body!

- Make sure your bed is comfortable
This is the only piece of advice that I actually agree with. I would also add clean sheets are a must! When I'm stuck in bed for days on end, hubby is a darling and changes the sheets after 3 days. Clean fresh sheets are a "thing" of mine, if I had the energy and the money I would have clean sheets every day! But I don't so if I'm not stuck in bed once a week is fine.
I bought a new mattress around two years ago as my old one was sagging and causing me to have a lot of back pain because it was no longer supporting me. I would wake up in the morning feeling worse than I did the night before. The new mattress was brilliant and my morning back pain reduced considerably. Then last summer I lost weight through not being able to eat solid food ( it was causing me awful stomach pain) the weight dropped off me and then my mattress started to feel like a concrete floor. Every morning my mattress had turned into an instrument of torture overnight. After a few weeks of trying various fixes ( lying on top of a double duvet etc) I could bear it no longer and I bought myself a memory foam topper. It was wonderful, the awful pain I was waking up with stopped. Now I still sometimes wake up feeling like I've slept on a concrete floor when I'm having an EDS flare but its not every morning. So there is something to be said about this bit of advice.

Part three of sleep and chronic pain will be coming out later this week.

You can now find me on facebook under The Myasthenia Kid.

This is Willow asleep on my bed a few years ago. I think she looks a bit like ET!

Sleep and chronic pain part one

I've decided to split this blog topic up into sections as its quite a large topic, also im currently not doing well so im having to limit my screen time quite substantially.

Here in the UK there never seems to be a week that goes by without an article in the media about the importance of sleep, good sleep hygiene and strange individuals who seem to be able to function on five hours or less sleep a night.

As you can tell from that last remark I'm not one of those individuals! I need at least seven hours to function the next day or more if I can possibly get it. Yet here I am at 540am writing a blog post having been awake since 330am. Oh the joys of chronic pain.

Before my illness made its way into my daily life and I just thought I suffered with a bad back and occasional low blood pressure, sleep was never a major issue. I could count on one hand the number of times from age 16 to 33 years old when I suffered from insomnia. As a teenager it wasn't uncommon for me to be out partying until 2am grabbing a few hours sleep and then working a full 9 hour day as a shop assistant. I didn't seem to need masses of sleep. I could go to bed late and wake up early feeling as fresh as a daisy.

In 2007 all that changed. In January 2007 I developed ptosis and all the medical opinions I sought told me I had an atypical presentation of Bells Palsy ( we now know that I've never had Bells Palsy and medical opinion is divided on the cause of my ptosis.) To treat the Bells Palsy I was prescribed high dose steroids for seven days. On taking them I had immediate side effect of steroid induced insomnia. I could have coped with the insomnia had it not been for the fact without sleep I had no escape from the unrelenting muscle pain in my forehead caused by the muscles sagging to the right by the ptosis. I would spend the night with a hot water bottle clamped to my forehead trying to get some relief. I had no pain medication other than paramol which is paracetamol and codiene which can be bought over the counter. It did nothing to dull the pain of what felt like the muscles in my forehead were being torn apart.

For those of you who don't know what ptosis is or looks like I've posted these pictures.

The picture on the bottom shows just a very slight ( for me ) ptosis the top picture shows both eyes trying to close the left eyebrow is desperately trying to keep the left eye open. You can see the strain my forehead is under.

From January 2007 I would never know what a "decent" nights sleep would feel like again. Sometimes I feel angry about this, especially when people ( non sick) say "I feel so tired, I didn't sleep well last night." Or when people who don't understand that I haven't slept properly for seven years take the piss out of my night time routines or say "your so lucky to have slept 13 hours". They don't seem to realise that I may have been "asleep" 13 hours but it wasn't a refreshing 13 hours. It was 13 hours broken up by thirteen trips to empty my bladder as I drink excessively over night. By excessively I mean at least 3 litres of fluid, if I don't drink overnight I end up dehydrated in the morning which exacerbates my autonomic nervous system problems. On top of all those bathroom trips I will have also been woken by breakthrough pain. Since 2007 I haven't known a night without unbroken sleep.

When researching this topic of chronic pain and sleep what became apparent is the link between poor quality / unrefreshing  sleep and the increase in pain the following day. Its a cycle that repeats itself over and over. There is no simple cure to this problem.

Some people might think / suggest extra pain medications to deal with breakthrough pain. Unfortunately increasing pain medications comes with its own problems. Increasing an opiate like morphine can have the side effect of causing insomnia. So chronic pain sufferers often have the choice between broken sleep or no sleep due to increased medication. I find increasing my morphine at night causes extremely vivid dreams, I wake up feeling more exhausted than I did the night before. The dreams seem so real that I can wake up confused as to whether or not it was a dream or a memory. The confusion can last a few minutes to a few days. One dream was so vivid that I believed for a day or so that I had served in the Royal Navy. I've never served in the Navy or abseiled from a helicopter. In fact I'm so scared of heights I can't climb a ladder so abseiling from a helicopter would never have happened!

Weirdly though for someone like me breakthrough night time pain serves a useful purpose. By waking me from sleep it forces me to move. With EDS my body can lock up and stick in position if I don't move frequently. Pain can serve a useful purpose even if it is a horrible thing to go through. Sleeping solidly for eight hours ( oh I wish) ok let's be realistic and say 1-2 hours in one position will cause me to have limited mobility for several hours after I wake up. My joints get stiff and painful and it can take a while for me to get that pain under control and get a full range of movement back into those joints. 

However constant micro arousals which cause you to wake throughout the night makes the quality of your sleep decline. I've found with EDS that it gives with one hand ( increased flexibility, young looking) and takes with the other (pain and poor sleep).

More next time ....

Frequency of blog posts

After last weeks fenzy of posts, which was probably an overload for a lot of readers I've decided, unless something exciting happens I will be updating my blog only 2/3 times a week so I can concentrate on quality rather than quantity.

Also as many of you are aware I'm pretty rough health wise at the moment and I can't put the pressure on myself to post daily when I'm barely able to make it out of bed for more than a few hours at a time.

My blog is never far from my mind and I'm thinking up posts / topics even when not actively blogging.

I would like to say a big thank you to Ellie for helping me get this blog going again and thank you to my regular readers.

Just to make it up to all of you I will finish with a picture of

Frankie

Dyscalculia - the forgotten learning disability

Ever heard of dyscalculia? No?  Nor had I until watching BBC breakfast a few years ago when a woman who is a professor in mathematics was talking about her issues with basic maths. I'm really sorry that I can't remember her name as I would like to email her and say thank you for talking about it and making me realise when it comes to maths I'm not stupid I just don't think like everyone else.

I've hated maths with a passion for years. It was the only subject in school that I couldn't' get to grips with. In every other subject I was an A grade student. Maths was my nemesis!

Maths made me freeze up, even now the thought of not having a calculator when maths are called for can give me sweaty palms. Thank Goodness mobile phones (cell phones) come with calculators on them! At one point when I was working I owned 4 calculators so I was never without one.

Maths is everywhere you can't hide from it. If you cook you use maths                 (weighing out ingredients, doubling up a recipe, cooking times etc) banking, shopping, telling the time, even playing a board game can involve maths. I could never join in playing darts down the pub because darts involves maths, the kind I just can't do unless you have a calculator handy!

I knew something was wrong with me as a child but I thought it was plain stupidity. How can it be that I can be taught multiplication tables daily and still not know them? How is it I can't add 8 + 5 without counting it on my fingers? It is 13 right? And yes I had to check by counting on my fingers even though I've been using this sum for two days in my head whilst preparing this post. Who does that?

The weird thing is I know that 8 + 4 = 12 and can do that without counting on my fingers. However I don't see what everyone else would describe as the obvious when it comes to maths. That 8 + 5 has to be 13 because 5 is just one more than 4. My brain doesn't see the connection and there's nothing I can do to make it. I'm lacking the innate mathematical ability that the majority of people are born with. But that doesn't make me stupid it just makes me different!

I was a child of the 80's and I thank my lucky stars for that as digital watches were all the rage. It covered up my inability to tell the time beautifully. I actually couldn't tell the time until I was 18. I was ok with quarter pasts, quarter to, o'clock and half past but the bits in between, I had no idea what so ever. Someone telling me I had to meet them at 25 (minutes) to, meant I would be there at half past because I knew 25 to, was somewhere between the half past and the quarter to but I just didn't know where.

I developed a habit of being chronically early which endures to this day. My reasoning was if I got there early I couldn't be told off for being late. Now if my husband and I leave the house later than I have planned in my head it makes me anxious and makes things seem like they are out of control. I don't 'do' late and I get really cross when other people have a laissez faire attitude to time keeping. I'm getting better but I still have to stop myself saying something because its my problem not theirs - unless they are taking the piss and stroll in two hours late and I've had that happen!

Dyscalculia can be described as dyslexia and dyspraxia's poor relation. It was identified as a learning disability 1974 by Dr. Ladislav Kosc. http://allaboutdyscalculia.weebly.com/history-of-dyscalculia.html

Little has changed since it was identified kids aren't tested for it routinely and still all these years on kids like me are labelled as being "stupid" when it comes to maths. Where as many people including teachers are aware of dyslexia many people are unaware of the condition dyscalculia.

Testing for dyscalculia is still being developed and current tests are only available for primary school children. I've not been officially diagnosed as having dyscalculia but as with my medical conditions (postural orthostatic tachycardia syndrome, Ehlers Danlos syndrome and severe autonomic dysfunction) when I read the websites the description / symptoms were me exactly.

Much research has been conducted on what area of the brain is involved in mathematical problem solving. Dyscalculia can be congenital or it can come about due to stroke or traumatic brain injury. My dyscalculia is congenital, Ive never known my mathematical ability or lack of it to be any different. It is also believed by some researchers to be an inherited condition.

Dyscalculia affects individuals differently we mainly have issues with mathematical concepts, learning things like multiplication tables as we can not retain the information. I have problems if a news article says someone has been awarded a six figure salary, it means absolutely nothing to me. I have problems with thousands, hundreds of thousands and millions. Not as written words but when they appear in their numerical form. So much so Im not even confident about writing what they would look like.

Another dyscalculia give away is problem learning to tell the time, I've developed my own coping strategies to deal with this. Even when I write the time I tend to run into problems as I write the time military style so 1810 not 18:10 or 6.10. I get really funny about people saying that they don't know if I am referring to a year or the time. It may be funny to them to point out what they perceive as a mistake but to me it takes me back to the Friday afternoon humiliation of my primary school teachers maths quiz, where we weren't allowed to write down how to work the answer out but had to do it in our heads. To a person with dyscalculia trying to work out something in your head is akin to learning a foreign language with no text book or teacher. I cant see the numbers in my head they just don't exist. Now even thinking about the Friday afternoon quiz has upset me and made me angry. How as a child could I voice the fact I couldn't do it when surrounded by 29 other individuals who could? And what if I had, would my teacher have known about dyscalculia or would have been just another weird thing I had said ?(I'm a lifelong vegetarian, with my sister we were the only vegetarians in the school) .

I am chronically oversensitive when it comes to maths and being perceived as stupid / thick/ unintelligent etc etc.

Dyscalculia can exist on its own, its believed 3-7% (depending on whose material you read) of the population has this learning difficulty. There are much higher incidences of dyscalculia in people who are dyslexic or dyspraxic. Some source material stating as high as 40-50% of those with dyslexia or dyspraxia also having dyscalculia.

Some websites describe dyscalculia as like dyslexia but with numbers. I don't have dyslexia so I couldn't tell you. To me it feels like I have a phobia of numbers / maths it terrifies me because I know no matter how hard I try I will on 99% of occasions get the answer wrong. Math causes me an awful lot of stress. To try and do mental math is impossible because in my head nothing is there it just goes blank. This probably sounds bizarre to those of you that don't have this learning disability. Your ability to do mental math astounds me!

Its hard to explain my problems with numbers having never known what its like to live without this problem and the condition is so varied amongst those it affects there is no one size fits all description.

In very basic terms we don't get numerical relationships, (don't even get me started on fractions!) we don't see what you would call the obvious and we can also have visual / spatial reasoning issues. The latter probably explains why I am rubbish at IQ tests, you know the ones where they ask you which number comes next in a sequence of numbers or what shape comes next? I must have baffled my teachers at school as clearly I wasn't stupid but my IQ tests results would have put me south of average.

I remember my GCSE maths teacher coming and seeing me when I returned to the sixth form a month after the GCSE results had come out. I had been predicted an E for Maths GCSE. I actually ended up with a C, to this day I have no idea why or how! Mr C came up to me and congratulated me on my result. He said to me something along these lines " whenever you handed in your basic maths coursework you would be in the bottom percentage of the class, but what I could never understand was when we were doing the advanced stuff you were the only one that ever got 100%. I just don't understand it." Well now Mr C you and I both understand why it happened I have dyscalculia!

I'm including some links that I've found helpful in putting this blog post together, for those of you who identify this in yourself or others around you.

http://www.bdadyslexia.org.uk/about-dyslexia/schools-colleges-and-universities/dyscalculia.html
http://aboutdyscalculia.org/symptoms.html
http://www.unicornmaths.com/dyscalculia/
http://allaboutdyscalculia.weebly.com/general-information.html

If I could also ask a special favour of you as well? Please can you share this blog post to help other adults / children who have this forgotten learning disability. Thank you from the bottom of my heart.

quick update

I am still here and still committed to regular blogging but EDS, POTS and autonomic dysfunction are kicking my arse at the moment.

Whilst I'm not blogging properly there is a post planned for Monday 10th March 2014, which I'm hoping to put together tomorrow as hubby is on nights so I will need to be quiet during the day so he can sleep!

My laptop is back up and running and I've treated myself to a wireless printer so there's no stopping me.

Thanks everyone for reading my blog and feel free to ask any questions or leave comments. Sometimes your questions / comments lead into blog posts.

And for the dog fans out there. . . .

losing what little ground I had gained and a tale of two naughty hounds!

This post was supposed to be about something else entirely but the energy theives visited and I'm stuck in bed!

Since the beginning of February after the tilt table test which I'm now seriously starting to regret having my health has been in a precarious state.

I've had a couple of good days in the last month but that's it. Currently its just constantly lurching from one bad day to the next. Pretty much every day by 2:30pm I'm done, by 4:00pm I'm ready to sleep. I have to try and keep myself awake otherwise I end up waking up after 7 hours wide awake, which makes it a long day if you've been up since 3am.

My heart is constantly racing again, on the fludrcortisone my blood pressure has only reached the dizzying heights of 100/61. To tell you the truth I am sick of it.

The steroids make me grumpy and angry. They are wrecking my skin and despite the increase of salt I seem to be constantly dehydrated. Its been so bad that my skin is extremely slow in going back down after you pinch the back of my hand. Everything I drink just goes straight through me.

I will be quite honest I'm feeling miserable!

Now something to make you laugh

This is Frankie lying on our new rug. The day we bought it he wouldn't get off it. Today he managed to puke on it, he had been eating grass out in the garden which I was unaware of. Whilst I went into the kitchen to make myself a drink he puked bile (bright yellow bile) and grass onto the top corner of the rug. As I am quickly cleaning the rug as hard as I can as I do not want it to stain and the carpet shampooer is in the shed, I hear a rustling in the kitchen.

 I've left the cupboard door open in case I needed more cloths or towels.

 I know what is happening, I should have realised this would happen.

Mollie has jumped up and pulled a bag of treats down to help herself being aided and abetted by Willow. This is what my husband and I refer to as a rookie mistake! The thing is I've left that cupboard door open countless times and she's never done it. She's so sneaky she knew I was too busy cleaning the rug to stop her!

By the time I got back into the kitchen all that was left was an empty wrapper and two dogs making a hasty exit! Ears down and tails between their legs. You have to admire their audacity. If I hadn't been elbow deep in puke I would have taken a photo!

Here are the naughty girls! Like mother like daughter. I couldn't be cross for long and it has given me something to chuckle about today!

So glad I have my babies to make me smile! Even if they are cheeky beggars!

If you think you have Ehler Danlos Syndrome...

I wrote this post in September 2011 and I think its such an important post ( my god that sounds so boastful!) In helping others get the diagnosis that they need that I'm reposting it today.

I am having laptop troubles at the moment, so far all of my blogs this year have been composed on my tablet but I need to get onto my laptop to sort some bits and pieces out with my blog. There's a post I want to write but I need the laptop as I'm struggling to post links etc as I'm just not very computer savvy!So here's the original post from September 2011 oh and a picture of Frankie boy for all his fans!

 I am writing this in response to a comment from my last posting. I haven't had a brilliant week so I am sorry I haven't posted before.

This was the comment....

"I have recently met someone who believes she has EDS...she has hypermobile joints, migraines, and the other day a very sudden onset of complete fatigue !!! What a mess ???I am finding it hard to understand all she is going through..why is she not diagnosed...would it make a difference if she was ??/ Apparently has always been 'double-jointed' and had 'growing pains' as a child..Some days you wouldn't even know she was afflicted but this only lasts for a few days...she is about five foot one, petite, dark hair and huge dark eyes...like a bush baby...does this sound familiar to anyone.... on Changing the course of other peoples lives whilst stuck in bed!"

So what do you do if you think you have EDS? The lady mentioned in the comment certainly sounds like she could have EDS, migraines are extremely common in EDS - another big clue in my family as my parents and sister suffer with migraines as do I. Plus our paternal grandmother also suffers with them. The hypermobile joints are the biggest give away.

The best thing to do before even approaching your Dr about the possibility that you have EDS is arm yourself with information. There is an excellent web site with the diagnostic criteria for EDS which can be found here the beighton-score/scale go through these diagnostic criteria honestly and objectively and mark what applies to you. Print them off as well to take to your Dr to show them that your joints range of motion is beyond that considered normal.

Unfortunately many Dr's are still working under the misguided notion that EDS is extremely rare, the figures they used to work on were 1 case in 20,000 in the population. Recent research shows its around 1 person in 5,000, with many leading doctors in the field thinking this is a conservative figure with many cases of EDS being undiagnosed and many medical practitioners believing that a condition called Benign Joint Hypermobility Syndrome is actually Ehler Danlos syndrome 3 (or hypermobility).

EDS is a syndrome so its not one size fits all, many people live with the condition all their lives displaying very few symptoms other than they seem uber flexible. Others live in constant pain, crushing fatigue and find their mobility is severely compromised due to it. Hence due to the wide range of symptoms many people slip under the radar when it comes to being diagnosed.

EDS at the moment seems to be the illness de jour in Britain, with many popular TV programmes covering the condition and raising its profile in the general population. Not all portrayals have been positive but raising the conditions profile can only lead to more people being diagnosed.

So you've had a look at the diagnostic criteria and your symptoms fit, where do you go from here?

The first thing would be to book a double appointment with your GP, so that you aren't rushed and they are not under the pressure of seeing a patient every 7 mins. Take copies of the diagnostic criteria with you  clearly marked with what applies to you. A good GP should be open to your ideas about your condition and wants to work with you. Hence why I had to change GP's this year, if I had stayed with my old GP I would still be without a diagnosis and heading for psychiatric care. If your GP doesn't listen to you see another member of the practice and keep seeing them until someone listens. If no one is willing to entertain the possibility move to a different practice. You are allowed to move GP practice's and you won't get into trouble, some people find that prospect daunting but if they aren't listening to you what option do you have?

Once you have a GP on side they may be reluctant to make the diagnosis themselves despite it being quite obvious. It maybe worth doing this next bit before you see your GP, find out what Dr's at your local hospital deal with joint hypermobility / EDS they can usually be found in the Rheumatology Dept. You need a Rheumatologist that knows about EDS, otherwise you could still be left without a diagnosis. So once the GP understands that it is highly likely you have EDS you need to get a referral to a Rheumatologist. Expect reluctance (although hopefully you won't encounter it) on the GP's part as this costs the practice money..... as we all know the NHS budget is being squeezed. If you can afford it get a private referral, expect to pay anything from £150-£300. Its not cheap being sick, I should know! Again make sure you do your homework on who you are being referred to you don't want to spend all that money only to find out it was a complete waste of time.

The person that left the comment said they didn't know if it was worth being diagnosed. EDS is a genetic disorder there is no cure only treatment. Diagnosis is important, although I am going through a rough patch and I'm not really getting on with physio I don't want people to think why bother?

I couldn't get adequate pain relief until I had a diagnosis, I was fobbed off with paracetamol and diclofenic. That combination barely touched it and would leave me confined to bed due to the pain. I am extremely unlucky as my "version" of EDS has affected my spine - one of the most painful types of EDS. I am now on morphine slow release tablets, I don't revel in the fact I am on strong painkillers. I take the lowest dose I can 10mg in the morning 10mg at night. (This dose has now been increased to 20mg twice a day with oramorph to take with breakthrough pain. With my GP's consent I am allowed to increase my slow release morphine up to 40mg, but if I need to do it for 4 consecutive days I must contact him- 5th March 2014). I still have pain and there are days I take 20mg or even 30mg to numb the pain.

Also for 10 years I had constant nerve pain in my left thigh a problem I saw my old GP about on a regular basis. Since the diagnosis I have been put on a medication (which for reason I can't spell today) that has resolved that issue almost completely.My old GP did X- rays of my spine and hips but unfortunately with EDS a lot of the problems are in the soft tissue which doesn't show up on a X-ray. Having a diagnosis means the Dr's will now do the appropriate tests rather than rely solely on X-rays.

With EDS Hypermobility there is a 50% chance of an aortic aneurysm, plus there can be issues with the mitrial valves of the heart. Another good reason for a diagnosis, at present I am too sick to attend any cardiology appointments for scans but both my father and sister have had their hearts checked and are clear of any of these issues. Great news.

Another good reason to have a diagnosis, especially for the female of the species is that after menopause we lose bone density, in EDS we lose a lot more than regular folk. So its important that we receive a bone density scan before hitting the menopause and once after the menopause receive regular scans to ensure we aren't losing too much. With crappy collagen which is at the base of our problems we need to ensure our bones are not being put under undue stress by muscles, tendons and ligaments failing to do their jobs properly.

Also as people with EDS we have the risk of passing this genetic condition on to our children (not applicable to me!). There is a 50% chance that children with  an EDS parent will inherit the condition. By getting the diagnosis you will be helping your offspring so that if they do have the condition you will be able to assist them in protecting their own joints. This has been one of the reasons why I have fought hard for a diagnosis, I have a nephew that is soon to be 2 years old. I didn't want him to be in the same amount of pain as his mother and me.

EDS also increases the risk of periodontal disease so its important you have a dentist who is aware of your condition. My dentist X-rays my jaw yearly to ensure I'm not losing bone density which would mean I could start losing teeth. Dentists in particular need to be aware of the issue patients with EDS have concerning local anaesthetic in the fact it either doesn't work or we burn through it faster than "normal" people. In fact local anaesthetic anywhere on the body won't work as well, as I found out on several occasions before my diagnosis. When I complained of pain I got told by the Dr I couldn't possibly feel it as I was anaesthetised. So on that fact alone I do feel a diagnosis is necessary!

 Also if you are in employment a diagnosis means that in the UK the Equalities Act which replaced the disability discrimination act will apply to you. It means that your employer should make reasonable adjustments for you in your place of work. These could be anything from providing a more supportive chair, adjusting working hours or getting an occupational health advisor in to help you and your employer to work together to find solutions to problems.

Having a diagnosis won't get rid of the condition, its genetic and currently there is no cure. However having the diagnosis helps with so many aspects of your health and life it would be silly not to pursue it. Having a "rare" condition is never easy but there is help there it maybe that you have to push a little to get it.

Thanks......off for a nap now!

Meet the hounds

I talk about my dogs a lot, they are after all my babies. Without them I don't know what I would do with my days.

Frankie is my early warning system if I'm going to be ill           ( when I say ill I mean sicker than normal). He knows three days before it happens. Its not something he's been trained to do its just something he's always done. His warning is quite subtle and to the untrained eye would probably mean nothing. Sometimes I don't even notice it until it becomes more persistent and I can't use the bathroom without him barging in! He is stuck to my side constantly in the three days before I crash and continues until I'm out the other side of it. I worry that its an awful lot of pressure for him to deal with and its no wonder he is so protective of me that he will occasionally bark at my husband if he comes into my room whilst I'm under his watchful gaze.

This is nurse Frankie when he was on duty two weeks ago. He puts his legs on head on me so that I can not move without him being aware of it. He's going to be 8 this year and a more soppy loving dog would be difficult to find. Although if you met him out and about you would think he was a wild barking brute. Give him a bonio and things change dramatically! Frankie is my dog and has been right from the start.

Willow, Farnkies sister is a different kettle of fish. I think she would have been happier in a house where she was the only dog. The runt of the litter who we didn't expect to live as she weighed 100g less than all the other pups in the litter had attention lavished upon her from the day she was born. Willow believes that humans purely exist to ensure she is cuddled and adored from the minute she wakes until the moment she sleeps. Everyone who visited the house ends up with willow stuck to their side having to cuddle her! She is the leader of the pack and can be quite bossy. She's not a massive licker, to receive a kiss is quite an honour. She's a nervous dog taking after her mum Mollie. She likes to bark and has on occasion barked herself hoarse. Luckily for the neighbours her barking mainly takes place in the car.

This is Willow sharing the sofa with me after settling down for yet another cuddle. Willow doesnt have a favourite when it comes to my husband and I. She is happy as long as someone is cuddling her. She is 8 this year and is Frankie's sister. They came from our 2006 litter born in our spare room. A litter of nine pups, three girls and six boys.

Mollie is the grand dam, mother to 18 puppies, two litters and Frankie and Willows mum. She's best friends with Frankie and still to this day cleans Willow and Frankie's ears every morning! Mol will be ten this year and over the last twelve months has suddenly started showing her age. Earlier in January she was diagnosed with the early stages of canine dementia. The symptoms started very slowly and probably wouldn't have been noticed initially had it not been that I am with them 24/7. She stares off into space intently gazing at nothing, occasionally gets lost in the house and has now started running off out of the house every evening when my husband gets home from work. Even though its just two to three metres from the house to the car she has to put on a lead to ensure she doesn't run off.

Mollie is my husbands dog through and through. The only time Mollie has been my dog is when she was in season or when she was pregnant. During those hormonal times she would want me all the time. It was very special to have her wanting and needing me much to my husbands disgust. 

The dementia is slowly robbing her of her mind however there has been something good come out of it though as she now is much more affectionate towards me and her behaviour has reverted back towards that of a puppy. There have been a few accidents in the house but as long as she is happy we aren't too worried. She can grow old and batty like we all will at some point.

So these are my babies, three weimaraners who are very much loved and adored.

Medical terminology - I know I tend to use it a lot!

I know I have an awful habit of using medical terminology to describe my symptoms or conditions. So I thought I would break it down for anyone who is new to autonomic dysfunction or Ehlers Danlos syndrome.

POTS - postural orthostatic tachycardia syndrome ( its full name) This is diagnosed by a tilt table test. You are strapped to a table with a blood pressure cuff and heart rate monitor attached to you. Its usually done in a dimly lit room and you lie flat for 15 minutes or so, so that base lines readings of your pulse and blood pressure can be recorded. Then out of nowhere you are pushed into an upright position to stimulate standing. Pots is diagnosed if your pulse increases by more than 30 beats per minute or goes above 120 beats per minute during the first ten minutes of the tilt. Non pots people have an increase of 15-20 beats per minute and then their heart goes back to normal. Vomiting, fainting and feeling like crap are all quite normal during this test. I ace this test! In very basic terms your body can't cope with changes in posture and sends your heart mental.

Orthostatic Intolerance / OI - This is a drop in blood pressure on standing and is again diagnosed via a tilt table test. For the first time I demonstrated this on a tilt table test last month. I have no idea what my pre tilt blood pressure was doing but it dropped to 80/40 on the upright tilt. I will be honest I felt like crap, lost my vision but could hear the technician panicking and suggesting the table be dropped back down! As a result of OI  I have to be careful when I get up from lying down or being seated as I can faint if my blood pressure drops ( as anyone would!)

Arrhythmia - A normal heart rate range is between 60-80 beats per minute. Very fit people tend to have slower heart rates of around 50-60 beats per minute. Below 60 and you are entering bradycardic territory above 90 and you are entering into tachycardia country. I can suffer with both. A heart rate that doesn't stick in a rhythm is also an arrhythmia. Mine bounces around all over the place and is probably why I feel like shit most of the time.

Autonomic dysfunction / dysautonomia - This refers to problems with your autonomic nervous system. Your autonomic nervous system deals with the bodies functions that you have no conscious control over so breathing, heart rate, blood pressure, digestion, temperature control to name a few. Pots/ OI etc are symptoms of autonomic nervous system dysfunction. Why mine has now been classed as severe I have no idea. I was too out of it after the tilt table test to ask!

Post prandial hypotension - this basically means your blood pressure drops after eating. This is a problem I've had all my life I just never realised what it was and didn't bother to do anything about it until it got much worse. After I eat I get very sleepy and I get palpitations. Some days its really bad and I will end up going to sleep / blacking out no matter how hard I try to stay awake. When I come around an hour or so later I am very confused, I think that I'm back at my parents house and I haven't lived there since 1996 or I think I'm back at our flat - haven't lived there since 2003. It gets quite frightening especially if my husband is at work as I have no one who can tell me what is going on. The condition is caused by too much blood going into the abdomen to digest your meal. This causes your blood pressure to drop and in turn causes the blackout / faint . I've tried all the first stage interventions low carb meals, ibuprofen taken 30 minutes before a meal, espresso drunk whilst eating. Nothing works and out of all my problems its the one I find hardest to live with.

Low Blood Pressure so what exactly is low blood pressure? The world health authority classes it as blood pressure below 100/60 in the UK most drs think low blood pressure is any reading below 90/60. My blood pressure is constantly low, sometimes even my blood pressure monitor can't read it and displays error! Your blood carries oxygen and nutrients etc around the body. When your blood pressure is low your brain and other organs simply do not get an adequate supply of oxygen. Too little oxygen and you start to feel fatigued, dizzy, nauseous to name a few symptoms and if it goes low enough you will faint ( syncope as the drs call it). Normal blood pressure is anything above 100/60 or 90/60 high blood pressure is anything above 140/80. Everyone has their own blood pressure number that their body likes to function at. I function best when its around 110/80 but I haven't seen that in a very long time!

Ehlers Danlos Syndrome / EDS - is a connective tissue disorder that effects the bodies collagen. Collagen is the bodies glue, without it you would fall apart. EDSers as we call our selves have faulty collagen its too stretchy / floppy leading to dislocations, partial dislocations, joint pain, easy bruising, gastro problems and a whole heap of other issues.
There are quite a few different types of EDS mine is the hypermobility type. It means the majority of my joints can move way beyond what's considered normal. For example I can place the back of my head on my back, I can touch my thumb to my forearm, my fingers can all be moved past 90 degrees, I can do prayer hands behind my back etc etc whilst it was fun when I was younger and when I first got diagnosed I'm in constant pain with my joints. Every day is a battle to work out what I can do to redfuce the pain and have some level of activity. Recently after a week in bed I could barely walk so using my joints as much as I can is important to retain functionality.

I'm sure there are loads of other medical terms I drop into my blog at the drop of the hat but I just can't think of them right now! If I haven't mentioned one and you want a basic explanation please leave a comment!

Palpitations, arrhythmia - heart stuff!

Since my nose dive early February I have been experiencing the worst palpitations I've ever had. I have the feeling of my heart pounding for hours on end, before the nose dive it was just a few minutes numerous times a day particularly on exertion. Its new to me and new is scary especially when I've been told I have an arrhythmia.

The arrhythmia was discovered during the tilt table test last month. I listened to my consultant as he stroked his beard and said over and over again "wow, I've never seen this before". When I asked him what he was referring to he said during the tilt my heart never sustained a rhythm but went all over the place and my blood pressure never steadied. It dropped and rose all over the shop. It didn't seem that surprising to me as I've witnessed it on hospital equipment and my own medical equipment. I actually went into hospital due to the weird heart rhythm in May 2011. As it was a bank holiday and my condition wasn't acute they decided to release me with a promise of a follow up to a cardiologist something that never happened.

Bank holidays are never a great time to be admitted into a UK hospital as their are fewer nursing staff and even fewer drs. The Dr that saw me admitted he had spent 30 minutes googling my condition before he came to see me. I really hate the fact this is a rare condition and most drs course of action is to just leave it alone or wait and see. That's because both of these approaches do nothing to help me. Hence my reticence now of going to hospital when things get rough.

A worrying development on the palpitation front is the new style ones, which can only be described thus, I feel like there is a balloon expanding in my chest the feeling goes up into my throat and then makes me cough several times. I will be honest I've had these in the past too, mainly when stressed out. However these are also happening several times a day. Although they take seconds to end they leave me feeling dizzy, fatigued and with a horrible ache in my chest. I think I need to call my gp about this on Monday and let him freak out about these as well.

I just wondered if any of my readers had also come across these horrid little things as well? I would be most I interested to hear if any of you have. I will of course update you on any progress I make towards seeing a cardiologist.

 Presently my gp is waiting for me to have the drug trial in April before referring me to see the cardiologist, those in the UK will know that what he's actually waiting for is the change in the financial year now that the budgets have been handed over to the gp's.  A good gp he maybe but budgets are tight and its not currently considered an emergency. Things may change after Mondays phone call!

The five year diary

It was my 40th birthday a few months ago and one of my presents was a five year diary. Not the usual run of the mill diary but one that gives you a few lines to answer a specific question each day. The thinking behind it is that over the five years you can compare your answers.

My one and only new years resolution ( other than to lose weight which has been every years for some time now)  was to post the question on my face book page every night and get everyone to answer the question along with me. Its been quite funny, poignant and those who have taken part have really got into the swing of it.

However a set of generic questions to answer every day has its problems. How do you answer the question " how did you get to work today?" And " when was the last time you were sick?" When you are medically retired and always sick? Do you answer with humour to make light of the situation or do you answer truthfully knowing on both counts things are in the next five years unlikely to change? Sometimes I've chosen humour other times honesty. I wish I had answered the work question by saying I had slid down the bannister! I wish I had been able to convey just how much I had laughed at the question about being sick! Because I really did laugh. What else was there to do?

Don't get me wrong I don't hate the diary quite the opposite I love the diary, some of the answers supplied by my friends have been hilarious! Some have lead onto debates about various issues. People have also messaged me or posted on my face book page demanding to know where the days question is if I haven't posted it by the usual time!

People have messaged me and said some days on the diary question its obvious that writing the answers has been quite cathartic for the authors.

For a short period of time my facebook page also held a debate. It was incredibly hard finding debate subjects that were accessible to all and that wouldn't descend into name calling as I had seen happen before. I couldn't sustain this without help so I had to knock it on the head, it meant I had to be glued to facebook all day and this may surprise some people but I do have other things to do.

So far I have only forgotten once to post and considering the state of my memory and the fact its March tomorrow I've done bloody well.

I've had imitators, people who have posted diary questions on their own facebook pages and who have failed to get past a few days. I've had a sly little chuckle at those! Because I can be evil!

 I'm proud of my staying power, I'm terrible at starting things full of gusto and then it fading away once the first flush of excitement has gone. After all my recorder is sat in the kitchen unplayed for weeks - however you do need a bit of lung capacity to play it and unfortunately this nose dive has literally knocked the wind out of my sails.

This little project of mine the diary question has been enormous fun and I'm grateful to Ellie for getting it for me. Its unique and has given me something small to look forward to everyday. So thank you xx