In Sickness & In Health

A guest blog post from my husband Jamie (aka Jay).

 

Jay has been saying that he would write a guest piece for around a year. Well I have finally pinned him down. The first time I read it was when he handed it to me ready to be typed up onto my blog. I won’t lie some of it moved me to tears. He is a typical bloke who quite often doesn’t say what he’s thinking or what’s worrying him. I know he loves me that much is clear but I am so proud of him for writing this piece and introducing himself to my readers. So here it is…..

 

Hi,

 

I’m Jamie. I am 43 years old and I am married to Rachel. You may be a frequent visitor to her blog and while you are all probably well aware of our dogs (as understandably so) they get more blog time than me, you may not know much about me.

 

 

I met Rachel in 1997, whilst we were both attending a management training course. I knew from the minute I met her she was going to play a massive and pivotal role in my life. We were engaged around one month after we met and I moved in with her the following year.

 

We were married in 2000 in Sri Lanka. An incredible setting for such an important moment in our lives. We eloped and our trip to Sri Lanka was not only our Wedding destination but the first time we had been abroad on holiday together.

 

Three years later we purchased our now home and lived happily ever after…….

 

The End.

 

Well not quite. You see regardless of what happened then to her health, nothing changed for me. She is still the same incredible person.

 

A lot of people told me to “walk away” or told me “this isn’t what you signed up for”. However what I signed up for, was to spend the rest of my life with my lover and best friend. And that is what I am doing.

 

Others have said to me “oh being a carer and working full-time must be so exhausting”. My answer is “No it’s not. She is there when I wake up and there when I return home from work.” During all the visits to the doctors / consultants, guess what? We are together and we talk for hours. In fact it doesn’t matter how bad things get, she’s always talking! We rarely even listen to music in the car because every journey is filled by the sound of us laughing and chatting. So don’t feel bad for me. I have the best life there is, spending so much time with my amazing wife.

 

Yes there are up’s and downs. Occasionally I get very stressed out because she is so unwell. Sometimes I need to take emergency time off work to look after Rachel and I have to say work have been fantastic in supporting me and looking out for my mental health.

 

Rachel has supported me selflessly over the years. She has supported me as I have grown as a person and as a husband. She has always been there for me, as I have been there for her.

 

Yes I make mistakes, I leave the toilet seat up, smear shaving phone on the mirror, leave blue hair gel in the bathroom sink and I undercooked a pizza once. I also promised to write this blog post last week when I was on holiday from work but instead found myself overtaken by the other love of my life my PS4.

 

Through all the bumps on the road of life, we know and understand each other better everyday. In February we celebrated 20 years together as a couple, this September we will have been married 17 years.

So that’s about it, short and sweet I know but not a downbeat, oh woe is me post. I couldn’t be happier. I do hope you’ve enjoyed my blog post and that you will continue to support my wife’s blog.

 

As I said in 2000, In sickness & in Health.

Hello Darkness My Old Friend

Last week was a bit of a nightmare. I was so fatigued it was ridiculous. I was sleeping hours but still felt like a zombie when I awoke. My legs felt like they were made of lead. My brain was sending the messages to them to move but they would refuse, causing me to fall over. When I could move them they felt as if they were made of lead. Climbing the stairs (which I limit anyway) felt like I was scaling mount Everest. Then on Tuesday afternoon, I recognised a feeling that I haven’t had in a long time. My face, eyelid and eyebrow were beginning to drop. I ended up going to bed for a lie down and slept for three hours. When I awoke the feeling was gone and I was relieved to have dodged a bullet. But I hadn’t, when I woke up on Wednesday morning this had happened.

 

 

Now I have a level of Ptosis everyday, normally unless you were specifically looking for it you wouldn’t know it was there. My eyelid droops to where the pupil starts to become obscured. That level of Ptosis I can cope with, it doesn’t affect my vision and it doesn’t tend to make me feel unwell.

Wednesday morning I woke up feeling horrendous, arms and legs both felt like they were made of lead. I was dizzy and due to my eye being nearly completely closed I couldn’t see very well. My forehead felt as if it was being ripped in two, with my left eyebrow arching in an attempt to keep the right eye open, only it was failing miserably. After a couple of hours I decided this really wasn’t worth the hassle of trying to stay out of bed. At 8am (I had risen at 6am) I gave up, took some HuzerpineA (like a herbal Mestinon as I can’t tolerate the real stuff) and set my alarm for 9am hoping when I woke up the Ptosis would be gone.

 

I gave myself an hour as like Mestinon this stuff takes about 20-30 minutes to get working. Plus I was also having a friend over, so needed to be washed and dressed before she arrived. I naively thought an hour in bed would be the magic cure. What an idiot! When it’s bad like this even proper Mestinon can fail to work. I should have realised when my alarm went off, that this was not a good day. I never fall straight back to sleep after being up for a few hours. I messaged the friend to advise them I would have to cancel, something I hate doing as it means I have knackered their plans for the day. She was absolutely fine about it but it doesn’t stop the guilt over cancelling. I text my husband to let him know I would be staying in bed for the day and that I might need him home if things got worse. I then went straight back to sleep.

 

Most of Wednesday was spent asleep if I am honest, I have a few brief periods awake mainly to get something to eat and have a cigarette. The fact that I was so utterly incapacitated scared me. This reminded me of the bad old days when I first got sick in 2007. How I had gone from working full-time to a year later being ill-health retired. I hadn’t been this sick what I call MG sick in years. Probably close to nine years, so you can imagine my shock, when this came totally out of the blue.

 

Thursday I woke up feeling an awful lot better but then by the afternoon was back in bed on home oxygen. I couldn’t take a deep breath in, as my chest just felt like it couldn’t expand. This really scared me as I have been blue lighted to hospital barely conscious due to breathing difficulties. This was exactly how it had started in 2008, I tried to walk across the lounge floor but stumbled as my legs wouldn’t work properly. The following day whilst hubby was out getting some shopping (helpfully forgetting to take his mobile phone) I had collapsed unable to take a proper breath in. I’d had to call 999 myself, trying to stay calm whilst the supply of oxygen in the house felt like it was running out.

There have only been a few times in my life I have been utterly terrified by my symptoms and that was one of them. I ended up being wheeled straight into resus, placed on oxygen running at 15 litres a minute and I still had very poor oxygen saturation. They  discussed with me about putting me into a medically induced coma and putting me on a ventilator. They wanted Jay to be at the hospital, I now realise it may have been to say goodbye, at the time I was oblivious and said he had to look after the dogs. I look back now and it moves me to tears. I wasn’t frightened at the time I was just exhausted from not being able to breathe.

 

I had all this running through my head again on Thursday, thankfully within two hours I was feeling much better but I had to spend the rest of the day in bed.

Gradually I have improved and back to my normal (but limited) levels of activity. However I am still having days where my arms and legs are refusing to work the way that they should. Today I was trying to do stuff around the house and I kept falling over my own feet as they felt as if they were stuck to the floor every time I went to move. I have started choking again (frequently) on fluids, something which hasn’t happened in a really long time.

It’s frustrating that despite in many aspects of my health improving a great deal, no more headaches, much less joint pain since giving up dairy, that this has started up again after leaving me alone for such a long time. Thankfully I have a hospital consultants appointment coming up at the end of next month and I will be able to discuss it with him then. I think it maybe time to bring up the possibility of Myasthenia Gravis again as seronegative MG seems to be much more accepted than it was ten years ago.

 

This song was going through my mind the whole of Wednesday and Thursday

 

 

EDS how it affects me three years on

Last week as part of Ehlers Danlos Syndrome Awareness Month, I recycled a post I wrote in 2014. As with any illness / condition / disease when you look back you can see how things have changed. Some things may have improved and new symptoms may have reared their ugly heads. Ehlers Danlos Syndrome is no different, I sometimes think it’s like playing a slot machine each morning never knowing what the combination of joints giving me pain (and problems) will be that day.

 

I am still as bendy as I was at this point three years ago, although getting my thumb to touch my wrist isn’t as easy as it was before, my thumbs now seem to sublux (partially dislocate) or strain the ligaments on an almost daily basis. Who’d have thought something as simple as taking my trousers / underwear down would be enough to cause pain but it does. Looking back on the photo’s of my fingers it is clear that they are more flexible now than they were two years ago. Although some with EDS will stiffen up with age despite being 44 this year, I seem to be getting more lax. I wonder if by the time I am 80 I shall just be a floppy mess unable to move due to the collagen (the glue that holds us together and is what is faulty in EDS) just being stretched beyond belief.

 

I wrote at the time that my elbows are normal and as usual when I write anything about my condition, it’s like an open invitation for things to change dramatically. Doctors don’t seem to be able to agree on whether my elbows are hypermobile or not, to me they don’t seem to be but then it’s difficult to gauge what a normal range of motion is when you have been surrounded by anything other than the norm. My normal is growing up within a family that is hypermobile, so I never considered my flexibility to be anything other than that. My elbows can be very sore first thing in the morning, as I am asleep when I am doing the damage I can only assume that I am over extending the joint. It makes my elbows really ache and feel clicky, I can feel tendons and ligaments rub over the bones.

 

My spine is still the area of my body that causes me the main problems. I am currently waiting for a spinal x-ray to try to find out what’s going on at L5-S1 level. This pain is very different from my “normal” EDS pain, it hurts when I lie down or sit down and eases off when I am moving. In the mornings I am very stiff and look like a hunched over old lady. After a few hours it eases up but the minute I go to bed the pain starts up again. I have been taking a NSAID and it’s really helping which is the first time a nsaid has ever helped. I am hoping the x-ray shows something as it’s hard going with it affecting my sleep.

 

My fingers are also causing a problem not with them being more lax than they have been previously but with them swelling, clicking and pain. Some mornings I can barely use my hands as they are so swollen. When they are bad the only thing I can do is just wait it out until the swelling starts to subside. My grip is also a lot weaker, so opening child-proof bottle tops is a nightmare, I am struggling with even normal bottle tops because I no longer have the strength of grip I had previously.

 

These are just some of the problems I face with EDS on a daily basis and I could never predict what was going to hurt not hurt the following day. It feels totally random and at times, the pay back for relatively undemanding activity totally disproportionate. I always laugh when medical professionals say we need to learn to pace ourselves as I never seem to have the same energy level on a consistent basis. I never know when I have done too much until hours later and the pain starts. If I paced myself I would never do anything for fear of causing pain or fatigue. Both of which are just a standard part of my day.

 

I was finally diagnosed with EDS when I was 37, my condition suddenly deteriorated in 2007, it took until 2011 to get some answers. Whilst it’s great to find out that no, I don’t have a low pain threshold, yes I can feel things after I have had a local anesthetic the problem now is that aches and pains get blamed on EDS rather than being investigated properly.

 

There also seems to be a blanket policy in many of the hospital trusts that unless a condition is life threatening, surgery (if needed to correct a problem) will not be performed. This is done under the guise of “first do no harm” and the worry of making things worse however unless you’ve lived with this condition you have no idea the levels of pain we can function at. I have bowel adhesions (fibrous bands of scar tissue that have wrapped themselves around my intestines), I had them surgically removed in 1998 (before the EDS diagnosis) because they were causing me to collapse due to the pain they caused on a regular basis. I still get awful periods of time with them, I have to be careful what I eat, so I can’t have raw vegetables as it triggers the pain, yet when I saw a surgeon a few years ago I was told unless my bowel becomes obstructed they won’t operate. I have heard similar stories from other people around the UK, that they have various problems that could be sorted out by surgery yet due to the EDS diagnosis they are told they can’t have the operation.

 

I was so pleased when I got the diagnosis as it finally explained all my weird symptoms but it’s a poison chalice. I have better pain medication but I am pretty much left on my own to deal with medical issues as they arise. Many in the medical profession believe that because there is no cure for EDS it means that there is no point trying to treat us. Now I have the diagnosis the level of help I get is severely limited.
There was a lot of drama recently within the EDS groups on-line as the diagnostic criteria had been changed. Many people diagnosed with Hypermobility EDS would now be classed as having joint hypermobility syndrome rather than Ehlers Danlos Syndrome. Having checked the new criteria I would still be classed as HEDS and to be honest even before checking the new guidelines, I wasn’t that bothered. Regardless of the label most people with EDS or JHS will receive shit care, have their problems minimised or ignored and surgery that would be offered in normal circumstances declined. It would have been far better if the bodies that spent all this time and money on designing the new criteria actually focused their efforts on getting patients better care.

Ehlers Danlos Syndrome and how it affects me

I first published this post in May 2014 for Ehlers Danlos awareness month, as it’s that time again I thought I would share for those new to my blog.

As May is Ehlers Danlos Syndrome Awareness month I thought I would share with you how my bendy body affects me and take some photographs to show you how bendy I am. Now I am well aware that as an Edser I am not supposed to perform “Party Tricks” every doctor I see tells me that after they’ve asked me to show them! The moves I have photographed cause me no pain – I wouldn’t be that stupid to suffer so much for my art!

For those of you unaware of what Ehlers Danlos syndrome is or that are new to it I am going to give you a brief and basic overview. EDS is an inherited connective tissue disorder, affecting the collagen protein in the body. Connective tissue is the “glue” that holds the body together, it connects tendons and muscles to the bones and holds organs in place. Collagen is what makes this glue and in EDS, its a bit defective. Our connective tissue is super stretchy and lax so it means that our joints aren’t held in place properly. Our joints have an unusual range of motion – so in normal people your joints will only move to a certain point. In EDS ours move to that point and beyond – the photo below is of my fingers which are hypermobile.

If you don’t have EDS you will recognise that my fingers should not be able to move this far. I have seen a video of a lady with EDS pull her fingers so far back that they touch her wrist. Thankfully mine don’t move that much.

It is important to remember that EDS is a syndrome ( syndrome means a collection of symptoms) so it affects people differently. You may know someone who is double jointed or extremely flexible ( and probably not diagnosed with EDS) they may when having a look at the beighton diagnostic criteria clearly have EDS but have no pain or any other of the associated symptoms. Where as I have constant pain and joints that like to sublux ( partially dislocate) or dislocate on a daily basis. Also some people find that they have joints that are very unstable (sublux or dislocate) and other joints that are fine and actually normal. My elbows joints are normal and not hypermobile and although I can do this (see photo below) with my thumbs the rest of my thumb joint is stable.

My doctors have classed my EDS as type 3 or Hypermobility, ( there are a few different types of EDS) I was diagnosed by a rheumatologist who I paid to see privately. Getting a diagnosis was one of the few things that my GP and I have ever disagreed on, he felt I didn’t need it I said that I did. Since I have got the diagnosis it has changed the management of my pain, my dental treatment and provided some much needed answers as to why I have had pain from such a long age. I was still being told I had growing pains at 26 when I visited a gp for my leg pain! You maybe wondering why my dental treatment changed after my diagnosis well with EDS we are more prone to periodontal disease (gum disease) and also we have a problem with all local anaesthetics. For some of us local anaesthetics don’t work at all for others, like me we burn through locals really quickly. My dentist also has to give me a local anaesthetic that doesn’t contain adrenaline. Due to my autonomic dysfunction adrenaline causes me to have tachycardia and that in turn can cause me to faint when getting up from the dentists chair – which I have done.

The worst area of my body affected is my spine which is very hypermobile from the back of my skull to my coccyx (tailbone) those little vertebrae rarely like to stay in place. My neck is hypermobile and I have what’s known as “owl neck” so I can move it not all the way around but too far on both sides. I also found out by chatting to someone on twitter that doing (see photo below) is not normal. You see thats the thing with EDS we have no idea what the normal range of motion is for a body part as we have never experienced normal.

I have four discs at the base of my back that I can’t even touch with my fingers without me flying through the air. I never have a day without some sort of back issue – muscles going into spasm, discs being naughty by locking up so I can’t stand up you name it my back can do it. You may have heard me mention before how I have to go to bed really early its because by around 5pm I am struggling to hold my head up and my back is starting to resemble the letter ‘C’. My muscles work hard all day trying to support me and by 5pm they are worn out and throw in the towel.

Although it may seem like fun that I can do all these things and I have the bonus of looking young for my age (the only good thing EDS has ever given me) life with EDS is not fine and dandy. EDS produces fatigue as our muscles have to work around 5 times harder than a normal persons every time we move. EDS is almost certainly the cause for my autonomic dysfunction its estimated around 78% of people with Ehlers Danlos Syndrome have autonomic nervous system issues.

There are currently no genetic tests for EDS Hypermobility ( other forms of EDS have genetic tests) and no cure for any type Ehlers Danlos Syndrome only treatment which consists of pain relief, physical therapy and bracing joints.

Throughout May I will be blogging about EDS to explain what its like to live with this condition.

Useful links

NHS CHoices explaining EDS and the types of EDS

Ehlers Danlos Support UK UK Charity for EDS patients and produces an excellent magazine called Fragile Links

Hypermobility / EDS and the other issues it can cause in the body– HMSA Charity (HyperMobility Syndrome Association)

Beighton Scale from the HMSA website

 

While I was getting my husband to take the pictures the dogs tried to join in. This is Mollie trying to give me a kiss!

 

 

This is me giving up as all the dogs tried to join in!

 Sunday 4th May 2014

I am very sorry this post was supposed to be published tomorrow. Unfortunately I am still trying to get to grips with WordPress and scheduling posts. My apologies  Rachel x

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 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

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 https://www.ncbi.nlm.nih.gov/books/NBK1279/) 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.

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

Mollie

Willow

Frankie

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

Sri Lanka

5. I have Ehlers Danlos Syndrome hypermobility type

Prayer sign

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