What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

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The storm has passed

The last 4 months have been a particularly trying time for me. Obviously some stuff I have alluded to such as my mum being diagnosed with cancer however there have been other things going on as well, which for reasons of my own privacy I won’t be sharing. I do try to share as much as possible with my readers but sometimes you have to hold a little of yourself back. When I write I always think do I care if my worst enemy has this information? If the answer is no then it gets written about, if yes well it never makes it to the blog.

I do like to have a division between my world and my life in cyber space. Like all people do in real life we have the public face the person we choose to present to the outside world and the private face, the person who only the very closest people to you get to see.

Thankfully what has been going on behind the scenes has now resolved and life can move forward again. Its feels like a massive weight has been lifted. For those 4 months I didn’t feel like me at all but someone who had a huge black cloud hanging over them constantly. I really didn’t feel like I was living and enjoying life merely  surviving. The anxiety the situation induced was off the chart. I found that the only place I felt any happiness was sat at my sewing machine, purely because you can’t ruminate ( well I can’t) and sew. My attention has to kept solely on the job in hand. When my mind wandered so did my stitches! Sewing yet again has got me through a very difficult period in my life. It is just such a shame that as I mentioned in last week’s post sewing is at times getting painful, causing me pain in my neck, back and causing pins and needles in my hands, arms and face. I now have to restrict the amount of time I spend sewing. I have found wearing a soft collar prolongs the time I can spend sewing.

Since July I have been sewing like a woman possessed! I decided earlier on in the year after my success in selling Star Christmas Tree toppers in the run up to last Christmas, this year I would experiment with opening up a little “shop” in cyber space. I’m not on Etsy – at the moment I couldn’t handle the stress that would involve! I have set up a little Christmas shop on a social media platform where my customers are by invitation only. As this is an experiment to see what sells and what doesn’t I have limited the numbers. It’s also filled with people who know me, who know that my health is very up and down and who wouldn’t hold it against me if I was slow to respond to a query etc. If I set up an Etsy shop I wouldn’t have customers who knew me and could be put under a great deal of pressure by their demands.

It has really given my self-confidence a boost. To this day I am amazed that people want to but the things that I make. Not that I think my items are crap – my heart and soul goes into them and I am my own harshest critic. I just can’t believe in 13 months how far I have come. I still have days where my self-esteem has a wobble but that’s life and I can deal with that. Living under a black cloud for 4 months is not something I want to repeat in a hurry. I didn’t feel like me at all, I didn’t act like me at all and I can’t have been a bundle of laughs to be around if I am perfectly honest. Its amazing what a difference a week can make and I feel like I am me again.

I’ve been making all sorts of things for my cyber shop since the end of June beginning of July,

 Christmas bunting / garlands

Christmas Tree toppers

Christmas stockings

Soft toys

Travis bags in various designs

 Lavender Ravioli

Norwegian Santa’s / Christmas Gnomes

Christmas tree decorations

Christmas door wreaths

 

I am still making a few more bits and pieces and will do throughout November. Then at some point I need to bind two lap quilts I made for our sofas, make Mr Myasthenia Kids fabric advent calendar. Plus make family and friends Christmas presents.

And as if that wasn’t enough I treated myself to an embroidery machine, which I am calling the beast V2 as my Atelier 5 (janome) is called the beast. I can’t wait to start learning how my new machine works. I bought a Brother Innovis 800e which is a mid range stand alone embroidery machine. It has a lovely big hoop which means I can work on several sizes of design. Jamie has already put in a request that he gets some new handkerchiefs that have been monogrammed by me! It has so many inbuilt designs and you can buy more designs on-line or can get them for free.

 

 

 

 

However buying the embroidery machine also meant upgrading my Chromebook. My old Chromebook couldn’t transfer data onto a USB stick nor download information from it. I tried resurrecting my old laptop – which ran on windows 7 ( so it was basically an antique) but it was painfully slow and I find windows as an operating system, a pile of shite and illogical, especially when you have been using Chromebooks and chrome ever since they were on sale in the UK.  I spent a small fortune on the Chromebook its an Asus Flip, so you can turn the keyboard behind the screen and it works like a tablet. It is amazing how the technology has advanced over the years.

New Chromebooks can transfer data to and from USB sticks, all I needed was a USB hub as the Chromebook comes with a micro USB port. I picked up a reasonably priced one from the place that has the same name as the South American River and within seconds was transferring data between USB sticks like a pro. It is something I have never done before, there was nothing to learn, no drivers to install the screen simply tells you a new device has been located and do you want to open it. I felt like the king or should I say queen of the world teaching myself how to do this in seconds. With me and windows stuff never took seconds it could take months or even years for me to learn the most basic of tasks as it just never felt logical to me. I often felt like I was being expected to juggle and balance a plate on the end of my nose!

So although my new Embroidery machine arrived yesterday ( Monday ) I didn’t have a play on it. By the time it arrived it was close to 3pm and my back had given out completely. I must have been a sorry sight as the delivery guy brought it into the house for me. Thank you DPD! It stayed in the box another hour whilst I waited for the back pain to subside and to stop the feeling that my ribs were being crushed. I then very slowly unpacked it and set it up in my sewing room come kitchen / breakfast room. I am hoping later on today will be when I get to have my first go on it.

And hubby and I had lovely birthdays last week. Happy birthday dad xxx

PoTs and the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in, a post popped up that deeply concerned me. Now obviously I only have this members say so that this is the case, it may not be true or aspects of it may not be true. However he alleged that a well-known UK doctor that many people pay privately to see after getting nowhere with the NHS when they have PoTs, was singing the praises of a clinical study that was using The lightning Process to essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a fear that a friend and I have shared for the last 4 years that research into the treatment of PoTS in the Uk was moving towards a more psychological rather than physiological model.

 

I am not naive enough to say that the mind does not play a role in health of course it does. People with depression can manifest very physical symptoms. I have found whilst dealing with anxiety and depression lately that my pain levels are affected. On the days where I am really struggling my pain levels are higher, when I am having a better day my pain levels are back to normal. Clearly mental health and physical health are linked as they are all part of the whole system. However to suggest a process that has many vocal detractors, that has had no properly conducted medical trials that have been peer-reviewed or replicated can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer that thinking positive thoughts will cure them.

 

Now when you try to research The Lightning Process online it is very hard to actually get any substantial information regarding what the process actually is. I had to search for quite a while last night. Part of the problem is that those that attend the courses ( that retail from between £500 -£750 for a 12 hour course over three days) have to sign (allegedly) a non disclosure document. They are also constantly told during the three-day course that sharing details of the course with others will prevent them from becoming well. The lightning process up until now has mainly been marketed at those with M.E, CFS, Depression, Anxiety, OCD, and Multiple Sclerosis. The main website has fallen foul of the UK Advertising Standards Authority and was forced to remove content that claimed it had cured people of various medical conditions and that it had a success rate of around 90%. From what I have managed to glean from online sources ( which I have provided the links for at the end of this post) it’s mainly based on positive affirmations, cognitive behavioural therapy and emptying your wallet of several hundreds of pounds. It uses a lot of impressive sounding terminology such as neuro-linguistic programming ( a discredited psychological therapy – https://en.wikipedia.org/wiki/Neuro-linguistic_programming, )  neuroplasticity ( changing pathways in the brain) and reducing Allostatic load (stress). It sounds very impressive and when you are desperate, the sum of £500 – £750 doesn’t seem that much if you are going to become well again within three days. I say three days as many of the LP (lightning process) practitioners claim that participants are well within three days.

 

From what I have been able to glean from some very limited research is that it’s all based on breaking the cycle of negative thinking. So at its very basic level its patient blaming, you are sick because you are trapped in a cycle of negative thinking. The negative thinking pattern is causing your physical symptoms – including MS, ME and now PoTs by the look of it, due to the fact you are increasing stress on your body by continually activating your fight or flight response. (http://lightningprocess.com/how-it-works/ ).

 

So for instance if you have the thought “ I feel terrible” you make the hand signal to stop – catch yourself in the thought, you then rephrase it as in “I am doing terrible” therefore making it your choice to be feeling that way ( see the subtle language change that shifts the blame back onto the patient so even if they claim that they don’t blame the patient the subtle change if language makes the patient believe they are responsible for their physical state – what angers me is there would be a national outcry if they tried this shit on with cancer patients). You then tell yourself you have a choice to make you can choose to descend into the pit ( where you allow your physical symptoms to take over your life and continue with the negative thoughts and never get better) or you can choose the life you love. Now what muppet wouldn’t chose the life you love? Who wouldn’t want that in a heartbeat? However if you fail to respond to the process you have effectively chosen to remain in the pit (of despair). You also tell yourself positive affirmations such as “I am strong like a tree” or “ I am a strong genius for choosing the life I love” as you visualise the choice you have made. Sorry only one word for this Psychobabble. Can you understand now why I am concerned that doctors who treat PoTs and Dysautonomia in the UK are singing its praises?

 

A lot of research with PoTs has been around a faulty fight or flight response so I can see why the leap has been made to the lightning process. As many patients with ME ( I hate the term CFS ) have dysautonomia as part of their symptoms, or possibly because many patients who were written off as having M.E but actually have PoTs and EDS (and dubious claims have been made about LP curing M.E), maybe these doctors decided that despite tilt table tests proving PoTs, that somewhere deep within our subconscious we are responsible for causing our own illness through a cycle of negative thinking. If you aren’t offended at any level that it is being suggested that your negative thought patterns are making you sick…….then there really is no hope for you.

 

The LP is so condemning of negative thoughts that to doubt or to criticise the process is seen as a reason why you haven’t been cured. From what I have read those taking part in the process are told to leave their analytical thinking at the door. There is even a suggestion of a screening process before you are allowed to attend the course. The practitioners claim that you have to be ready to attend so this is why they conduct a home study ( a basic telephone interview). Many of those who have spent the money to attend the course have said that the interview is a test to see how compliant you will be. Those who have attended the course and failed to respond to the process are quite often told by others who claim to have been cured, that they didn’t try hard enough, they didn’t implement it properly, they weren’t open minded enough ( whilst typing this I keep wanting to add “ to allow Jesus into your life” because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

 

Furthermore I have to say on reading some of the testimonials from those who say their illnesses have been cured by LP, sound very much like those people who have been brainwashed in some religious cult. They all say the same thing and usually end with the same accusatory tone that if the process didn’t work for you then you a) didn’t try hard enough b) don’t want to get well. Back to the old blaming the patient game for those of us who chose not to get better.

 

The major problem with the studies that have been conducted is that they have been so informal as to have patients with no official diagnosis provide a self diagnosis ( on it’s on page at the bottom it shows that the patient results are from people who have self diagnosed – so may not actually have the illness they are claiming to have http://lightningprocess.com/research/ ) also due to its technique of only accepting positive affirmations and to condemn anything that could be perceived as negative of course when you question people about how they are doing after spending so much money on what could be bought in the self-help section of a bookshop, they are going to tell you that they have improved. They have been told that to say that they are sick, worse not doing well is not following the process……..how can they say anything other than they have improved or are living the life they love?

 

I am always concerned when I find Doctors are conducting clinical trials on psychological approaches to treat physiological conditions. To me it’s lazy medicine, it’s a chance to shift the focus away from the doctors lack of knowledge / scientific breakthroughs and pushes the fault for the illness or disease back onto the patient. Any doctor that suggests this form of treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in, that a certain UK Doctor who is famous in PoTs circles is singing the praises of a clinical study into using the lightning process to treat / cure PoTS. How true this actually is, I don’t know. So there is no need for panic stations however I would love to hear from anyone in the UK who this treatment has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations will be when my blood pressure drops to 70/40? or when I dislocate a joint if it will pop back in if I tell myself I am strong like a tree?

Resources / Links

Official Lightning process website

https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

http://forums.phoenixrising.me/index.php?threads/a-balanced-view-of-the-lightning-process.35835/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.bqrkDAmny#.ri1ZbXzVk

http://skepdic.com/lightningprocess.html

My latest sewing projects

My mood is very up and down at the moment, the only thing that is keeping me sane and happy is my sewing. I am grateful that I still manage to find the joy in putting fabrics together for projects and making magic. To me sewing is a magical art in which I can lose myself. I am amazed at the things I create especially when you consider I celebrated my 6 month sewing anniversary on 7th April.

 

As I am all over the place I thought I would share with you some of my makes from the last few weeks. I can’t remember what I shared with you last – my memory is a bit dodgy from the new medications making me a little groggy in the mornings.

 

I bought myself a new sewing machine a Janome Atelier 5 – I love it. Yes it was expensive but it was bought with money I had inherited. I also worked out that if I banked the money from not smoking for the next 14 months it would also have paid for it. It is the best thing I have done, it is an absolute bloody work horse and oh my days making quilts has been so much easier.

 

 

I managed to hurt my back getting the beast (which is what I have nicknamed it )  through the house. So after setting it up I just sat and stroked it for about an hour. However I soon got to grips with it and used it to sew the binding onto to my first ever quilt.

 

 

I quickly started on a new quilt, which was another quilt as you go, which was a Rolling Stone design. I wanted to get this sewn / finished reasonably quickly as we were having new sofas delivered and I wanted a quilt for each sofa.

 

 

I managed to get quite a bit done but I didn’t complete it until after the sofas arrived. I was about two days out. As you can see Mollie and Frankie absolutely adore the new sofas

 

 

I also in between making the quilt and the sofas being delivered I made 6 baby bibs, for my friend Pam (who sadly passed away in January) whose daughter who had given birth to a beautiful daughter. I had promised Pam before she passed away that I would make something for the baby. The bibs were finished with Kam Snaps that were adjustable so will fit the baby for a while.

 

 

I managed to finish my Rolling Stone quilt towards the end of last week and I was very pleased with how it turned out. There are still a few mistakes in it but it is a vast improvement on the first quilt I made.

 

My next project has been something I have never done before which is foundation paper piecing. I have always been a little daunted by FPP but no longer! I have been making a pouffe for the lounge so that instead of Mr Myasthenia Kid putting his feet on the coffee table he can put his feet up on a pouffe. I am still working on it as I am waiting for some zips to arrive so that I can put a zip into the bottom of it so that the cover can be washed (with two mutts and Jay in the house things need to be washable). I have made a stuffed inner out of some stuffing I have had hanging around for a while and two bags full of fabric off cuts that I have collected over the last few weeks. I have also made a covered button to put on the top in the middle just to finish it off.

 

 

Over the next few days I will finish the pouffe and hopefully remember to post a photo on my blog. If I don’t it will be on my instagram account @rachelmorrismcgee or on my facebook page https://www.facebook.com/themyastheniakid.

 

I finished late yesterday afternoon…

The Great Pretender

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

Then on Sunday morning this happened

 

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

 

 

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

Being an Empath

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

 

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

 

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

 

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

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Entertaining and the aftermath

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

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

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

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

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

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

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

Thursday 21st January:

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

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

Friday 22nd January:

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

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

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

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

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