Limbo

Currently I am in diagnostic limbo, awaiting tests to confirm or deny the diagnosis of Myasthenia Gravis (again). It is a deeply frustrating time, whilst I wait around for my first appointment, I am essentially in no man’s land. Technically until proven otherwise there is essentially nothing wrong with me yet those who know me, know that what is happening at the moment is beyond my normal levels of crap health.

 

The hoops have already been set for me to jump through. Although my consultant has written to my gp requesting that he / she prescribes mestinon for me to alleviate the worst of my symptoms. A drug that is also used for PoTs although in this community it’s known as pyridostigmine bromide as it raises standing blood pressure. You’d think I was asking for crack cocaine to be prescribed. On Tuesday evening at 17:30 I had a phone call from the doctor’s surgery asking me to book an appointment to see my gp as the gp “wanted to speak to me about pyridostigmine bromide”. Now I maybe way off base but to me this doesn’t sound good. I raised the possibility of MG with this dr back in May and was essentially ignored, now they want to discuss it? I have never had an issue with my consultant asking my gp to write a prescription and it necessitating an appointment to discuss it.

 

* * *

 

I started writing this post on Saturday morning and was too ill to continue writing it. As you can probably tell I was a little wound up by the prospect of having to do battle with another doctor so soon. I have been getting weaker over the last few days, finding my legs turning to jelly along with my arms. The stress of waiting to see the doctor yesterday didn’t help. By the time it came for me to leave the house, my ptosis was the worst it’s been in a while with it also affecting my mouth, causing me to drool.

 

 

As it turns out I got myself all worked up for nothing. The gp wanted to ensure my understanding about Myasthenia Gravis, Pyridostigmine Bromide and to work on a plan for if I was to get worse before seeing the Neurologist. That was a weight off my mind, I am so used to having to attend an appointment and be prepared for a fight when it comes to MG, I couldn’t see it going any other way. It was such a relief. I know that the neurology appointment is a different kettle of fish but for the time being I can relax a little and work on being a bit more stable. I have had 19 days of ptosis (I still can’t believe I coped with this for nine months solid in the past) but now at least I have the medication to stop it in its tracks.

 

I decided to hell with it all yesterday on my personal Facebook feed and posted the photo that is above (but a colour version). I explained that Myasthenia Gravis was back on the cards again and that this is what I had been dealing with on a daily basis for 18 days (at that point). I always try to distance my own page from my health as I have had some really awful stuff said to me before. I tend to keep most things limited to my blog or my Myasthenia Kid Facebook page, so that people can choose to follow or not. I shouldn’t have to do that but I do because society can’t cope with an illness that doesn’t get better. It doesn’t understand that you can have good days and bad days. I find it easier to self censor than face the bullshit that comes with being honest. Sad but true.

 

So this is going to be a very short post as my arms are shaking from using the chromebook and I feel like crap. I can’t lie. Mestinon has been started and the same results as ten years ago achieved, as in my ptosis resolves within 20-30 minutes, longer if I am really bad and the weakness in my limbs lessens.

 

I did have a wry smile yesterday when the gp added to my notes “Myasthenia Gravis” but then I have been here before. Still currently officially in limbo.

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Strange Days

** warning vaguely political post**

 

I’m not a gambler, I think in all my life I have only ever put one bet on and even then I never entered a betting shop. However I am currently kicking myself for not placing a bet on the outcome of the UK General Election. As on the day Mrs May announced to the UK there would be a general election, I told a few people that I believed the outcome would be a hung parliament. Everyone I told looked at me as if I had finally lost it, Theresa May was flying high in the polls, the UK electorate had been force-fed the notion over the last two years that the Labour Leader Jeremy Corbyn was unelectable and here was me saying no one would have an overall majority. These are very strange times we are living in.

 

I am still recovering from election night, I didn’t mean to stay up all night. Jay was working late night on Thursday 8th June, I had gone to bed at 5pm as I was already stressed and tired not knowing how things were going to pan out. I did manage to drop off a little after 8pm (obviously I managed to listen to The Archers at 7pm the only soap opera I follow). I almost came too when Jay walked through the door but persevered with sleep. My plan was to get up between 3-4am when Jay took the mutts out, as I knew the majority of constituency results would  start to come through then. Things changed when I caught the news after returning from the toilet and the exit poll conducted by Sky, BBC and ITV was stating that it would be a hung parliament not the 100 seat majority we’d been told it would be.

 

A little shocked that the prediction I had made around 6-7 weeks ago was about to come true, I stumbled down the stairs. I planned on only staying up for an hour but ended up returning to bed at 05:30am. Twitter was just too entertaining to leave and so was the election coverage, littered with mistakes my favourite being Laura Kuenssbergs “rec*nt” instead of “re-count” or when David Dimblebys microphone was left on as a result came in, which he greeted with a very British “bloody hell”. I had to keep my sniggering quiet as Jay was fast asleep, luckily he had Friday off but he didn’t share my enthusiasm of wanting to watch the election results come in. Whenever we have had a party I have found I have been utterly exhausted for about a week afterwards. I had always put that state of exhaustion down to the alcohol consumed and being a social butterfly. It seems however it’s more to do with lack of sleep than anything else.

 

Friday was going to be an odd day anyway without the lack of sleep thrown in. Jay is rarely off on a Friday (unless I have a medical appointment), I had a friend coming over for a few hours and then bizarrely I met the new church outreach workers in the afternoon. The last bit was totally unplanned as neither Jay or I are religious, in 20 years of living here we have never met anyone from the numerous churches here. Due to Jay being off on Friday it threw us out all day, with both of us believing it was either Monday or Tuesday his normal day off.

 

I did manage to get about an hours sleep on Friday morning but as sleep was only coming in 10 minute bursts I decided that I better just get up or spend the day feeling absolutely horrific. It’s weird how sometimes even when you need sleep that having some can leave you feeling even worse. The tiredness hit me in waves all day, unfortunately for Immie, just as she arrived I hit a wall and spent the first hour desperately trying to keep myself awake. It was a good visit with lots of laughs. I was concerned when I had to explain to both my husband and Immie, why it wasn’t just the leaders of the parties on their voting slip. I can understand that from a youngster who has never been taught a thing at school about our parliamentary process but a 43-year-old? I think Jay was just having a blonde moment. I don’t profess to be a political expert and have never set myself up to be one however I was having to field numerous questions from both of them regarding hung parliaments, coalitions and minority governments. Even I ended up using google more than once, especially when I could feel my energy levels draining away.

 

I did toy with the idea of having a nap after she left but decided that it was too dangerous. I worried that if I went up to bed at 3pm I may sleep until midnight and then be awake for the rest of the night. So I busied myself on my Chromebook, checking out social media. Jay had gone to the doctors as he needed his blood tests as the medication he takes for his psoriasis  can affect his liver function. He also needed his asthma yearly review. So I had a quiet hour to myself or so I thought.

 

On Thursday I had a card put through the letterbox introducing the new outreach worker at the local church. I had left it on the lounge coffee table for Jay to see when he got home from work. I’ll be honest Jay and I had a good laugh about it for around 5 minutes and then forgot about it. When the doorbell went on Friday afternoon I briefly wondered what Amazon delivery it was that I had forgotten about. Unfortunately that isn’t something that doesn’t happen on a regular basis and is more evidence that I should be supervised at all times. Having shut the dogs in the kitchen, I made my way to the front door and to my surprise there wasn’t a delivery driver there holding a box in his hand.

 

I was greeted by a man with a huge smile, with a smaller slightly timid man behind him. He put his hand out for me to shake and said “Hi there I’m Mark and this is Gurjeet” in a lovely American accent. I recognised his photo from the card that had been put through the door the day before. I replied “Hi, yes you’re the man from the church. I have to be honest we don’t do religion here”. I didn’t want him wasting his time but I also didn’t want to be rude as I imagine he had possibly had many doors slammed in his face whilst introducing himself to the community. As he was a visitor to our shores I didn’t want him getting the impression that our small Devon town was an unfriendly and hostile place. However what he said next made me want to die with embarrassment.

 

“ Your necklace is so pretty, what does it say?”

 

I immediately put my hand up to my neck and said “oh god”, not a great thing to do, blaspheme in front of a Christian outreach worker but pretty bloody mild compared to my necklace.

 

“Oh don’t cover it up, what does it say? Truck the…”

 

“Erm no” I said not removing my hand. You see when the election was called I bought a new necklace. It was a bit of a laugh at the time but it didn’t arrive until 3 days before the vote. I had been wearing it solidly since it arrived and had completely forgotten that I was still wearing it when I answered the door.

 

Fuck The Tories

 

You see it didn’t say truck but something that rhymed with it and not something I was at all comfortable with sharing with a man of the cloth. These things always seem like a good idea at the time but I was now rueing the day that I decided to wear it non stop. I racked my brains trying to come up with a polite way of describing what it said. So I replied

“ It rhymes with truck but begins with F”

 and then held my breath, waiting to be condemned or lightening to strike me down. To my surprise he laughed his head off and said “That’s brilliant”. That threw me for a loop as I wasn’t expecting that. I have met a few vicars in my time, some have been stuffy old farts and others have been trendy Rev’s. Where I live it’s quite an old demographic so I was expecting a slightly if not excessively conservative response.

 

I needn’t have worried as for the next 20 minutes we chatted about Bernie Sanders, Jeremy Corbyn, if I had voted tactically and what had happened so far during the day. He wanted to catch up on all things to do with the election as he had been out on the doorstep all day meeting the local residents. I think I may have provided a bit of light relief as I imagine most of his conversations that day would have been about getting people into the local church and what issues were affecting the community.

 

I also used the opportunity to educate him about EDS, chronic pain and PoTs. So for me it wasn’t a wasted visit. In fact it was such an engaging conversation that I finished by telling him that although I was a lost cause as far as getting me to church, he was always welcome to pop in and have a cup of tea if he wanted a good debate. And I meant it, he was a total breath of fresh air and if I was at all religious he probably would have got me more involved in the church. He was sincere, interested and informed. We both decried how sad it was that no one seemed to be able to debate things anymore without resorting to personal slurs or even attempting to see things from another person’s point of view. We both linked this to the rise of social media, where if you disagree with someone you mute or block them, which means you surround yourself with only individuals that think like you.

 

After speaking with Mark and Gurjeet I felt more awake than I had done all day. Two Christian outreach workers that in the normal run of things I probably would never have met and  would have avoided talking to due to my own preconceptions. These are indeed strange days.

 

2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

 

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

 

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

 

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

 

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

 

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

 

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

 

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

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.

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