Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

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My first Quilt

It’s just going to be a little blog post this week as all of a sudden I have started to struggle with the heat. It is again ( as it was like this in the same week last year) much hotter than it would normally be in the UK for the time of year. The last few days I have been struggling with muscle weakness. One day I found myself unable to chew – must be my idiopathic hemifacial spasm playing up…. ***sarcasm*** because it went with an additional dose of mestinon. Obviously the placebo effect ….**sarcasm**

 

Around the middle of May I posted about my trip to the dentist and the fabric shop, where I chose the fabric I was going to use for my first ever proper quilt. Not a quilt as you go where the blocks are all laid out for you but an actual proper quilt. I had seen a quilt design I liked called “Floating Triangles” in a magazine called Simply Sewing designed by Janet Goddard. I loved the minimalist look of it and thought I’d love to make something like that.

 

So that was it, on a whim the fabric was bought and then it sat on my shelf in the kitchen until June 2nd, when I decided to start cutting it out.

 

 

 

A few days later I started to make the half square triangles (48 in total). I must be strange as I enjoy all aspects of sewing, it’s the cutting out I find hard but that’s been made a lot easier with my new creative grids stripology rulers. However for all the squares I had to cut out I couldn’t use my new rulers as they needed to measure 4 ⅞ inches. Typical! So I ended up making a cardboard template. I am useless at drawing straight lines, I really need to buy myself a set square to help in situations like this. I have already invested in a compass for the centre of my Dresden Plate designs!

 

 

The following day I started adding the strips to my half square triangles. Unfortunately I was a little over eager on my trimming of my half square triangles and found that I had to remake a load of half square triangles as they were so much smaller than the others and it would have made the rows wonky. I think in total as further down the line I had to make some more blocks I probably had to remake 10-15. Its annoying but I have kept them all as I will sew them together to make a bag, as I love the fabrics I chose for the quilt. I also had to buy more backing material due to my many cock ups with measuring. Thankfully with the new rulers those should be less!

 

Oh I forgot to tell you about my EPIC mistake of accidentally having two rotary cutting blades on my cutter. How did that happen? Well I bought some expensive blades and they were all covered in oil. I am guessing when I replaced a dull blade I didn’t check properly that it was just one blade. So it cut all my material as if a hoard of hungry mice had been chewing the side of it. Thankfully most of that could be hidden in the seam allowance. I am telling you this because some people seem to think everything I do is perfect and I never make a mistake. Of course I do! If I didn’t make any mistakes I’d never learn anything. I want you to know mistakes are ok, even if I am known on Instagram now to some people as “Two Blades Rach”. It’s quite funny really!

 

 

Once I had made all my blocks I sat down and worked out the plan of my triangles. It was important that I did this so I knew how my rows would go together. I also wanted to place certain fabrics together so they had a bigger impact rather than drowning each other out. I did a full size quilt plan and then I broke that quilt plan down into two.

 

 

 

Once my blocks were made I then put them away in a box and cracked on with a lot of makes for other people, birthday presents, thank you gifts and of course fathers day. I made Jay an Owl soft toy for father’s day which you can see on last week’s blog post. I also made him this lavender pillow

 

Front

 

Completed lavender pillow

 

Tula Pink Fabric back of pillow

I kept putting off making my quilt as I was terrified all the blocks would be all the wrong size and it would be a disaster. It is quite common for me to ignore a project for a bit if I am feeling anxious about it. I also have to be in the mood to sew certain things. I have to be in the mood to make clothes – I find it boring and hard work because I have such a skills gap. I have to be in the mood to quilt as it takes a long time and you can be doing the same thing over and over. It also involves a lot of pressing which in this heat you really don’t want to be doing. It wasn’t until I started making quilts that I learned there was an actual difference between ironing something and pressing something.

 

Last Friday I decided to bite the bullet and put this quilt together. I really hate having WIP’s ( work in progress) hanging around and I don’t do UFO’s (unfinished objects). I have a small house so projects need to be completed and gone rather than hanging around collecting dust! I checked all the sizes of the blocks and as I said earlier realised that some weren’t good enough and needed to be done again. So that added more time onto getting the quilt completed. For me it seems like it’s taken an absolute age to get done but Jay assure me to him it feels like he went to work one day and came back to a completed quilt!

 

 

I only managed to sew the rows together that day, as a lot of planning had gone into each row. Checking against my quilt plan I put all the rows in order using post it notes on each – with the fabric order on also, so that the chances of me making a mistake were minimal. I have made mistakes before with my quilt as you go quilts, where I have decided on an order that the blocks would go in. Taken photographs, only to realise once its all been sewn together…………..3 blocks have been sewn upside down totally ruining the pattern I had wanted to create. At the point of discovery of my mistake it was too late, I had sashed and bound it by then. Lesson learned, this time I over planned!

 

On the Saturday I started to sew my rows together.

 

As it was only 8 rows it went together very quickly, however disaster struck on the 8th and final row when I realised I had sewn the blocks together in the wrong order. Out came my trusty seam ripper and the blocks were then sewn in the correct order. I am so glad I managed to catch that mistake before continuing as it would have stuck out like a sore thumb otherwise the final row would have been completely different to all the other. If I am honest there was a lot of unpicking as the rows were sewn together as I managed to sew triangles together in the wrong position etc. I never let this wind me up though, I’d rather find a mistake at this point than like the quilt as you go first quilt I made.

 

I then cut ( using my stripology ruler) my borders for the quilt and sewed those on. At this point I was just totally in awe of what I had created. My first ever quilt top was sewn together. This was a huge moment for me! I then decided **ck it and decided I would baste my quilt. Basting is basically putting on your wadding and backing fabric, to the quilt top. As I didn’t have much room I did it in two halves not ideal but there was nowhere with enough floor space for me to work. I did it using the ironing board, it wasn’t perfect but it was done. I used a temporary glue spray and safety pins around the edges to ensure it was secure.

 

Sunday was the day I decided to quilt my quilt, that sounds bizarre but a quilt isn’t a quilt until you have sewn all three layers together. This quilt had a very basic pattern just straight line stitches that went through every second row of triangles. I managed to get some floor space in the lounge whilst everyone else was asleep and I marked out the quilting lines with a fabric marker and my huge ruler ( another creative grids one). Thankfully I had set my machine up the day before, so my extension table was on ( I discovered a neat trick as my extension table can move a little, especially when I bash the edge of it by accident, so I used masking tape to keep it in place just taping from one edge of the table to the other sticking it on the bottom of the throat space of my machine – avoiding the needle plate. I only used two strips of tape). I had also ensured that I had rested as much as possible, as I wont sew when I am tired. I started quilting on Sunday afternoon whilst Jay watched the England match. I was finished just after half time. I forgot to say I used my walking foot. I had to unpick a couple of little bits due to puckers and re sew them but its the neatest quilt back I have ever sewn.

 

 

Yesterday (Monday) I decided I would make my scrappy binding and then attach it to my quilt. I machine sewed the front of the binding in place using a tutorial from Lucy Brennans https://www.charmaboutyou.com/ blog. It went on very easily and then I had the afternoon to slow sew the binding onto the back. I finished late yesterday afternoon ( lots of frequent breaks as I have been really struggling with double vision the last few days so that makes threading a needle an absolute nightmare).

 

 

I had made a label for my quilt on Sunday evening but my eyes were so bad by the time I had finished sewing the binding on that I had to stop. I sewed my label on this morning at around 7am as I had been up for an hour or so by then.

 

 

Once the quilt label was on it was time to give it a wash to get rid of the temporary glue and the fabric marker from the quilt lines.

 

 

I am so pleased with this quilt I am still in shock that I made this!

 

And obviously I lied when I said it was going to be a little post, hubby brought our huge fan down from the loft this morning and put in the lounge for me. What a difference that’s made for me and the dogs!

 

Sewing Secrets

I am officially one of the worlds worst secret keepers! How I have managed to keep the following items a secret over the last few weeks is beyond me. When I make something for someone I always want to give it to them immediately  or I accidentally let slip what it is. This time however I have been strong even though it has been incredibly hard.

 

A few times recently in blog posts I have said that I have been unable to share what I have been making that week due to it being a present. Thankfully I can now share with you my makes – which I am incredibly proud of as these two birthday girls have received their gifts.

 

Imogen will be 21 on 23rd June and is incredibly special to both me and Mr Myasthenia Kid. I discussed with him months ago what I would like to make for Imogen’s birthday and he was in full agreement. It took me a little while to source the material as I wanted all kinds of Unicorn fabric but I also wanted it in Pink and Grey so it wasn’t over the top girly.  The first item I made was a 20 inch square cushion cover in a Dresden Plate design

 

I had a bit of a nightmare with the cushion pad as although it was sold as a 20 inch cushion pad, it was actually a lot bigger. I, being a novice and idiot didn’t think to measure the cushion pad before I started making the cushion. I just presumed that if something was being sold as a 20 inch square cushion pad that is exactly what it would be.  So when I placed the cushion pad inside the cover it looked terrible – in fact stuffed sausage would be an accurate description. I was almost in tears as I had worked so hard. So I decided to measure my completed cushion cover and make my own cushion pad to fit it. I used my overlocker to do the edges of the cushion pad and the ladder stitched it closed once I had placed the stuffing inside. I took apart the bought cushion pad and ended up with two nice squares of white fabric and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag. I had already made one as a project in my subscription box was this exact thing and they had sent out 42 charm squares, lining and webbing for it to be completed. I had really enjoyed putting it together and couldn’t get over how much I was using the bag as it was so roomy yet so light weight. So I made my own charm squares and bought the webbing online andknocked up one for Imogen.

 

 

I scotch guarded both the cushion and the bag to help resist stains. Imogen can be a little clumsy the same way I can. I also gave washing and ironing instructions with each.

 

Last week on the spur of the moment I decided to add something extra to Imogen’s gift. I had been doing some redwork for my other friends gift but want to change it up a bit so I found a  unicorn design online, unfortunately there is no attribution for this work so I can’t give credit to the artist. I did change it up just slightly by putting a heart around it and not using the words that had been printed under the design. Here is the finished item

 

 

I have filled the inside of the cushion with a mixture of stuffing and dried lavender. It smells divine and the whole house smelt of it for a few hours as I filled several lavender pillows that day. I again provided washing instructions / care instructions just in case. Imogen was given her gifts on Saturday. The message she sent me after opening them was so lovely it made me cry, then Imogen’s mum Helen sent me a message in the evening which was really lovely too and that made me cry as well. It’s really nice when you have spent hours working on an item and the person is overwhelmed by it and is truly grateful for them.

 

My oldest Exmouth friend Ellie also has a birthday in June ( not until the 30th but with works schedules etc it was difficult to know when I would see her next) . I gave her the gifts I had made this morning.

 

This is a redwork lavender pillow. The redwork design was free from a site called https://www.birdbraindesigns.net/ which has some really lovely designs on there. I added my own embellishments to the design and also added Ellie’s initial to make it even more personal.

 

 

This has again been filled with stuffing and lavender. It’s a lovely small size that could be placed under a pillow or in a drawer to leave the scent of lavender behind. I have really enjoyed doing the redwork and have made several more as gifts for people. They take me several hours to do but I really enjoy sewing them. The stitches on these and the unicorn cushion are very basic just a running stitch, back-stitch and french knot are all that are needed to create something that can look quite stunning.

 

The second part of Ellie’s gift had been in the planning stages for ages. I was scared to start it as it was something different than I had ever made before. Plus I kept adding to the level of difficulty. It was the first time I had used the product Odecoat which ( depending on how much you use) can make something totally waterproof. I did enough to make the item water-resistant / stain resistant inside and out.  This was also the first time I had used my machines embroidery functions, I also used the memory function. I used an iron on stabiliser as well and proper embroidery thread. So it was a project of firsts. The pattern comes from Lucy Brennans blog / website https://www.charmaboutyou.com/ and the pattern is the #pieceofmepouch. It’s so stunning and once I had my head around it not difficult to make. I also have to say a massive thank you to Lucy who helped me out when I was being a bit dim and not understanding the pattern. Lucy is always so encouraging and supportive, I can’t thank her enough.

 

 

This week I also had to make my dads father’s day gift.This had been rattling around in my brain for weeks. I knew I wanted to make him something that was special and a one-off but what. I decided after gaining confidence making the piece of me pouch that I could use aspects of that and make my dad a bag to carry his (clean and empty) dog poo bags. I decided that I wanted curved edges on the top, that I wanted it to be 3D rather than 2D. I wanted a loop on the back so he could attach it to a belt and I also wanted a clip on it so that should he not be wearing a belt he could attach it to his belt loops. It also had to be small enough that it would impede his walking.

 

In my mind’s eye I could see exactly what I wanted so last Wednesday morning I sat with an empty bonio box ( dog biscuits)  in front of me and made my template. I used Odecoat again to help make the fabric water-resistant and to make it a bit stiffer. Also when I quilted it, I made the lines much closer together as I knew this would make it much more rigid. I am delighted with the way it’s turned out. Unfortunately due to a series of events out of both of our control I have been unable to give it to him as yet. I am pretty sure he doesn’t read my blog – mum does so I will be safe posting it here.

 

 

My last make of the week was this Owl stuffed toy for Jamie, it was his father’s day present from the dogs.

 

I absolutely adore this and it looks so cool on his bed! So far the dogs have left it alone.

 

* * *

Health wise I have been up and down. The heat had been causing a lot more ptosis than normal. I can really feel the mestinon wearing off after a few hours so I have had to been really strict with my dosing schedule. As once I get full-blown ptosis it can be difficult to shift.

 

I managed to have a large abscess develop under my breast due to the chronic skin condition Hidradenitis Suppurativa. Tuesday afternoon this decided to erupt and immediately go into cellulitis. My breast was so painful I couldn’t wear a bra. Thankfully the antibiotics had it  gone right down within 3 days.

 

A few days over this last week I have been woken up in the night in a lot of pain with a headache ( not a migraine) . I managed to work out on Sunday that it had been due to the position I had been holding my neck in whilst sewing. This was causing me pain through my collar-bone and deep into the soft tissue of my neck. This was then causing me to have awful headaches. I actually got very paranoid that my CSF leak was back, until Mr Myasthenia Kid pointed out that Leak headaches don’t start when you are lying down, they start on sitting up. This headache was with me whatever position I was in. It was not a leak headache more poor posture due to the heat making my muscles weaker than normal.

 

This morning I woke up with a bad pain under my sternum and a burning feeling in the back of my throat. I immediately worked out that when I had taken my 4am antibiotic (despite drinking loads) it had become stuck in my gullet. The tablet had dissolved in the back of my throat and burnt the tissue. I have been drinking gaviscon straight from the bottle and drinking only water to settle it down. It is feeling better than it was but there is still a burning pain. I have had issues with taking capsules for years due to problems with my swallowing. This just highlights again how much weaker this has become during the heat.

 

So although it may seem like I must be doing ok because I have sewn loads don’t let online appearances fool you. Everyday I am on the maximum amount of painkillers I can take as my back is so awful at the moment I have been having pins and needles in both legs. I’m either too hot and feeling faint or feeling cold thanks to my wonky Autonomic nervous system. I am just determined to do my best every day and be the best that I can be and let the creative juices flow. It is what makes me happy. It doesn’t take away all the shitty  health conditions I am living with every day of my life.

Bluffers

Back in January 2015, I wrote about my visit to the Bladder and Bowel clinic which you can find here. At the time, I had to allow some space between the visit and writing because the nurse had wound me up so much. I spent the whole appointment listening to her tell me how ill her husband was with PoTs and how she had chronic fatigue. I am an empathetic person and although initially I was pleased that she knew what PoTs was, I wasn’t happy that the person that spent the most amount of time talking was her and none of it was relevant to me. She may have been trying to be empathetic but how it came across was that she was in direct competition with both me and her husband for the title of “Who is the sickest”. It’s never been a game I have wanted to play and I am shocked by just how many people indulge in it.

 

I can’t lie I wasn’t exactly thrilled about the fact that I had to attend the clinic this week, that it was going to be with the same nurse, one that I had put a complaint in against and had specifically asked not to see ever again. It’s nice to know the NHS listens to its patients when they make a complaint against one of its staff isn’t it? **sarcasm** I had visited the dentist on Tuesday morning, so I was already exhausted and although I hate going to the dentist, I’d have actually preferred it to an appointment with this nurse. As my husband says (and apologies for the crudity) “She’s wetter than a mermaids wet bits”.

 

Before we left to attend the clinic I had already explained to Jay what I would and wouldn’t put up with. I told him that if she pissed me off I was leaving the appointment. I wasn’t putting up with the drivel I’d had last time. I don’t think he quite believed me but I meant every bit of it. I was particularly distressed at the thought of having to go through an intimate examination with someone who I just can’t stand. I appreciate that it is for medical reasons but it still would have felt like a massive violation. Out of all the people who have treated me over the years and are still involved in my care she is the only one that produces this type of visceral reaction. I have been lucky as for around the last 18 months I have been dealing with the Bladder / Bowel care team, (through telephone consultations), based in a different area so haven’t had to deal with her. Unfortunately if I want my care to take place at the local hospital I have to deal with her.

 

Anyone who knows me, knows I have a real problem with people within the medical profession claiming to know about my medical conditions and then by opening their mouths  prove themselves to be idiots. I can’t stand someone doing that to me. If you don’t know, say you don’t have any knowledge in that area, don’t bluff and make shit up. As a patient who suffers from rare-ish complications from an under diagnosed condition, I read up and educate myself because if I don’t no one will do it for me. Most people I know with Chronic health conditions do this to empower themselves. Obviously these days it is an awful lot easier with the advent of the internet. However there are still some medical professionals that refuse to believe that Joe public can understand medical papers or that anything on the internet regarding medical conditions is remotely factual.

 

Unfortunately the nurse I have to deal with at the clinic is a  chronic bluffer. I don’t expect a person to have extensive knowledge regarding each patient’s medical conditions that would be utterly impossible. She may see 15-20 patients in a day, all with varying medical conditions and no disease / condition affects the sufferers in an identical manner (despite what the medical textbook may have told you). So within seconds of entering the consulting room she had got by back up. I won’t pretend that I wasn’t already massively on the defensive, purely due to my dislike of her. She started with wanting a recap of what had been going on health-wise since my last visit and the fact that I had been so unwell that I had been reliant on telephone consultations.

 

Basically if you haven’t read my blog before in 2016 I developed a spontaneous Cerebrospinal Fluid Leak or CSF leak for short. This meant I had the most horrendous headaches imaginable every time I sat up, stood up or basically raised my head off the pillow. I spent much of 2016 confined to my bed, in a darkened room listening to audiobooks. When I look back now I can see effectively I lost a year of my life, I still to this day think last year was 2015. I can’t shake it even though I know its 2017, my brain just refuses to accept 2016 even existed for me. For a taste of what 2016 was like here is the first blog post I wrote on the subject called “Never a dull moment”.

The nurse asked me about my visit to the specialist hospital for EDS. It’s something I have never written about as it was such a raging disappointment. 90% of people who develop a spontaneous CSF Leak are discovered to have  or have already been diagnosed with a connective tissue disorder of which EDS if one of them. I had been referred to this clinic as the hospital I was being treated at wouldn’t perform an epidural blood patch (something that had an 80% success rate first attempt to heal the leak). The anaesthetists that would have had to perform the EBP refused on the grounds that I have EDS. So I was left in a Kafkaesque situation where EDS had caused the CSF Leak and the doctors who could get me better were refusing to because I had EDS. Now imagine my horror when 30 seconds into my appointment with an EDS specialist when he tells me “EDS doesn’t cause CSF Leaks”.

 

I relayed this to the nurse who told me “well he’s the expert, he would know”. I could feel Mr Myasthenia Kid grab my arm, he knew that this was like a red rag to a bull. I pointed out to her  politely and without the use of bad language that this wasn’t the case. So she then replied “ well if there is only a small amount of medical evidence, it won’t have been enough to persuade him” I am paraphrasing. How I didn’t lose my shit there and then I have no clue as I could feel the anger rising in me. Here I am sat with someone who has no fucking clue (let’s be honest) and she is sticking up for a doctor that has no fucking clue. I pointed out to her that there were 100’s of medical papers on the subject, that the CSF Leak Charity would love to educate her on the subject and that the charity EDS Support UK had a massive article on EDS and Spontaneous leaks in its last magazine. Her response “oh” not I am sorry, I didn’t know that or that’s really interesting I will look into that. Just “oh” because “oh” always makes things better right? You maybe able to tell that I am still very annoyed by this.

Her next statement was breathtaking in its inaccuracy “well it’s healed now” . My leak has semi healed, it’s not 100%. It is no longer at the level of the 2016 dark days however every evening or it can be in the afternoon depending on how long I have been upright for, I get a positional headache that will only go when I lie flat. The headache can vary in intensity but regardless of the level of pain it is always accompanied by photophobia (so I need to lie down in a dark room). This means most evenings by 7pm I am in bed. I explained all this to the nurse who again tried the empathy approach “ well that’s not very nice for you, having to go to bed with a headache how do you sleep?” For about the second or third time I had to explain that a CSF Leak headache is the only headache that improves or disappears when lying down. It was irritating me no end that she was pretending to know all about CSF Leaks when she didn’t even understand the basics.

 

She then said “well you may have noticed that I didn’t have the lights on in the office before you came in, I have chronic fatigue which gives me photophobia “ This was now the third time she had told me she suffers from chronic fatigue. Her next suggestion then proved she had neither listened to me nor understood CSF Leaks on any level. “Well have you thought about wearing dark glasses all the time to stop the photophobia?” Jay said he could hear the anger in my voice when I replied to her and said “ as I just told you, I only get photophobia when the CSF Leak headache starts in the evening, I don’t get one without the other. Wearing dark glasses all day won’t stop the photophobia, the only thing that would stop it and the headache would be to lie completely flat all day every day. As I did that last year and it has significantly improved, I refuse to do that now”.  What was her response ? “oh right”.

 

Thankfully after embarrassing herself (can you embarrass yourself and be totally unaware that you have done so?) she decided to actually talk about the subject she had clinical knowledge about my bladder issues. Unfortunately my bladder has been misbehaving for a few years. We believe I have a condition called neurogenic bladder, so I have issues with urinary retention. I also have leakage issues or on some occasions I just wet myself without even knowing that I needed to have a wee. Touch wood I haven’t had any retention issues for about 12 months. Back in the early part of this year the leak issues were horrendous and the worst they have ever been. They improved when I was given the medication pyridostigmine Bromide, also known as Mestinon. This gives the medical profession another massive clue that I have seronegative Myasthenia Gravis but hey what would I know I am only the patient?

 

The effect of mestinon on my bladder was immediate. I no longer needed to wear pads if I was taking mestinon regularly. I now only wear pads if my MG like symptoms are really bad as I know I will leak then or when I leave the house for medical appointments. I still don’t have the confidence to attend appointments without a pad on because i have had accidents in the past. The difference on and off mestinon is really night and day. Crazy really. It was thought that possibly I had Fowler’s Syndrome, to me it looks like I probably had neurogenic bladder and Myasthenia Gravis, as the bladder can be affected by MG.

The nurse was pleased that things had improved so much, although she had no clue why and a) I wasn’t going to explain it was due to the introduction of mestinon and b) I didn’t expect her to. We ended  the appointment on reasonable terms, she did understand that it was important for me to avoid UTI’s ( every time I use a catheter I end up with an infection) as it impacts the rest of my health severely and a simple infection could take me a month or more to get over. So she will contact the urologist and ask about an antibiotic to take as a prophylactic, in the hope that it prevents an infection starting. I have tried every way known to (wo)man to use a catheter but every time ends with me suffering with a UTI. So some good did come out of the appointment.

 

I don’t have the expectation when I see a new doctor or nurse that they will be able to fit all the pieces of the puzzle together. They don’t teach medicine that way and they don’t practice it that way either, which is a shame because so many conditions have a wide impact across many different systems of the body. I don’t expect someone who works in one area of medicine to understand another area. That would be like asking a Cardiologist to perform a hip replacement or a Plumber rewiring your house. I understand and appreciate that medical professionals are experts (or should be) in the areas that they work in. What I won’t accept are bluffers  or people who make it up as they go along and neither should you.

 

A trip of a lifetime – the details, part 3

I am slowly starting to bounce back from our trip to Stoke-on-Trent last week. I can’t believe that a week has gone by already, last week was a peculiar week as in some sense it felt like a very long week and Monday the day of our trip seemed to disappear in a flash.

 

There was an awful lot of planning involved for our trip, medication supplies, drinks, snacks, directions, dog sitters (thank you Imogen) and just general stuff like making sure we had fuel! We got up a little after 3am on the Monday of our trip. Hubby went straight out with the dogs so that they would have a good run around before we left. We planned to be back home by 7pm that night so that they could have their evening walk also. This was going to be the longest amount of time that we had ever left them in someone else’s care and we were a little stressed out. What made it worse was that when we went to leave the house at 5.30am both Frankie and Willow kept attempting to escape and come with us. It really upset me to have to keep pushing them away from the front door. They are never normally bothered when we leave them. We have left them like this with Imogen on a couple of occasions. I don’t know what had unsettled them but it made leaving them very hard and I was riddled with guilt.

 

It was absolutely pitch dark and quite cold when we set off. There was barely any traffic and we made really good time. I had deliberately not drunk very much as otherwise we would have had to stop constantly. We made our first stop at around 7am at Gloucester services. The one that looks like the house where the Teletubbies live. I have to say the services were excellent for disabled access. There were also numerous family changing rooms for babies and young children so either mum or dad could change a nappy. In  the disabled toilet I used there was also a shower, with a proper shower chair. There was also more than enough room for me to be able to turn my wheelchair around and be totally independent, rather than having to get hubby to rescue me and pull me out, as normally with disabled toilets there is just enough room to get you into the cubicle but there is no way you can turn your chair around and get back out again without assistance. Another good thing about the toilet was that it was gender neutral. This is a major issue when I go anywhere that if the disabled toilets are within the gender specific bathrooms I really struggle. Manually moving my wheelchair can cause my shoulders to dislocate, it is also extremely tiring. So if I am having a rough day I don’t want to have to navigate a disabled toilet alone because Mr Myasthenia Kid can’t come with me.

 

Gloucester Services Selfie

 

We made really good time all the way up until just outside of Birmingham, for the rest of the journey we didn’t get above more than 40 miles per hour if that. It was so bad at one point I was starting to panic that we weren’t going to get to the Emma Bridgewater Factory until after the tour we had booked to go on had started. There are some major works taking place on the M6 and then once through them we hit road works in Stoke-on-Trent. After panicking that we had taken a wrong turn in Stoke-on-Trent we pulled up in a disabled spot right outside the factory gates at 9.50am. The relief was palpable, we were going to make the tour and we were going to be able to do the day as we had planned.

 

The only downer about the day was being approached by a religious nut just outside the factory gate.

 

Factory Gate

 

She had watched as Jay aka Mr Myasthenia Kid had got my wheelchair out and wheeled me in front of the sign (where everyone has their photo taken). She then proceeded to thrust a leaflet into my hand. I gave it a quick glance, realised that it was nothing to do with the Emma Bridgewater Factory and that is was highly offensive codswallop purporting that disabled people etc could be cured through the power of prayer. It also claimed that I was disabled through not having a strong enough belief in God. I was absolutely livid that she had deliberately targeted me, she made no attempt to give her disgusting leaflet to my husband. Had we been anywhere but outside the factory the place that I had wanted to go for at least a year, I would have told her to swiftly fuck off. I believe in religious freedom but the courtesy must be extended to me to allow me to live my life without your beliefs foisted upon me. Especially when they were that bloody vile. I gave her back her leaflet and just said “no thank you” through gritted teeth. One fruitcake was not going to ruin my day.

 

Outside the factory

 

The only access issue I found with the Factory were the doors, a lot of times I couldn’t get through them unaided due to the width of my wheelchair and possibly Mr Myasthenia Kids poor driving skills. This wasn’t a problem as the staff were absolutely marvelous and would come and help without being asked and obviously I wasn’t unaccompanied where that may have caused me a few issues. What we have to remember is that the factory dates back to around the mid 1800’s. To do a major revamp on the factory would mean to lose a lot of the character of the place. It isn’t needed when you have so many people, including fellow visitors there to help you out. Everywhere else in the factory was really well thought out, no stairs just ramps, lovely and flat.

 

The factory Cafe

 

There were six of us in our tour group and it took us a good hour to get around the whole building.

 

One of the slip casters

 

The first place we visited was where the slip (clay mixed with water) is poured into the casts. All the people working in here were really nice and would bring things over for me to have a look at as due to the wheelchair my view was obstructed on occasion. Our Tour Guide Jane was also really good, answering all my questions and showing me things that I wouldn’t have got to see without her making a special effort. All the staff no matter where we were in the building were unfailing polite and would stop and chat about what they were doing. I did feel very sorry for them as there are numerous tours a day, with some very large groups, at times they must feel like animals in the Zoo.

 

All the way around the factory there were shelves of earlier Emma Bridgewater pieces which was really lovely to see, along with displays of new designs

 

Factory Display

 

We saw every single aspect of the pottery factory and it was incredibly interesting. You really don’t realise how many pairs of hands your mug or plate might have gone through. We saw the Fettlers, the kiln workers and the decorators to name just a fraction of the team.

 

Decorators station

 

The tour took about 70 minutes and I would love to do it again as there was so much information to take in and due to the excitement of being there etc I haven’t remembered an awful lot which is disappointing!

 

After the tour I had booked us into the Pottery Cafe. This is where you get to try your hand at decorating your own pieces. There are a range of different bits and pieces that you can choose from to decorate from egg cups to gallon teapots. I was incredibly lucky and found a Salt Pig which are as rare as rocking horse poop as the factory no longer produce them. It wasn’t even on the price list in the cafe. I also decorated a pint mug and Jay decorated a pint mug. The staff come over and take you through everything, how to correct mistakes, how to choose the ceramic paint colour and how to apply the paint onto sponges if you are using them. Each table is set up with a tablecloth, a mug full of paintbrushes and bowls of water, pencils and little sanding blocks to erase stray bits of paint should it happen. Here are the items we painted and they should be back with us by 27th November. I can hardly wait to see how they have turned out. Emma Bridgewater won’t be offering us a job decorating her products anytime soon.

 

Pint Mug

 

Salt Pig

 

Jay’s Pint Mug

 

We spent around 90 minutes in the Pottery Cafe and we both thoroughly enjoyed ourselves. We both have a newfound appreciation for the level of skill needed to decorate spongeware. It must be very nerve-wracking for the staff the first time they have to do a personalisation. I tried a bit of writing on the bottom of my salt pig, just R & J 30-10-17 and it was awful! The letters are always so crisp on a personalised mug I’d love to know their secret.

 

After our decorating exploits we hit the shop, we were literally like kids in a candy store. We had saved up some money, plus both sides of our family had given us cash for our birthday and Christmas presents. It was both of our birthdays last week. So we had a crazy amount of dosh to spend, it will probably never ever happen again but it was nice to be able to spend the money on stuff we wanted and not have to worry about how much it was.

 

Our haul included

 

Storm Lanterns

 

Gold Christmas Carol Mugs

 

Christmas 1/2 pint mugs

 

Christmas Carol Plates

 

We also picked up some bargains in the seconds outlet. Once we were all shopped out we went for afternoon tea in the cafe. This was also where I met a friend and her husband for the first time in real life! That was an extra special bonus. Thank you for coming to see us xx

 

By 3pm both Jay and I were really starting to tire and we had a long journey home. Stoke-on-Trent through to the other side of Birmingham was an absolute nightmare. Thankfully we only had one stop on the way home, which was a quick toilet break and fuel for the car. After Gloucester the traffic was very light, we had been dreading the homebound journey as we felt we could get caught up in rush hour traffic somewhere along the way. We finally made it home at 7pm, the dogs were taken out and then we just collapsed into bed. It has taken me until the end of last week to get any energy and brain function back. I am still getting tired much earlier in the day but it was so worth it. I can’t wait to go back some day.

 

A trip of a lifetime part 2

As expected I am completely wiped out after our trip to Stoke on Trent to visit the Emma Bridgewater Pottery factory. We had an absolutely amazing time and I would do it again in a heartbeat but just not right now as I can barely think straight or keep my eyes open.

 

We both learnt so much from our tour around the factory. Our tour guide Jane was brilliant ensuring all our questions were answered. The staff were all great too, I did feel a little sorry for them as they must feel a little like animals in the zoo, with people parading past and staring at them. How they manage to get any work done is beyond me and shows how totally dedicated and professional they are. I don’t blame them for wearing headphones to drown out all the distractions they must have with multiple tours daily.

 

The disabled access was pretty good. A few of the doors were just slightly too narrow for my wheelchair to get through that was quickly remedied by other members of the public or staff opening up the other door (very few of the doorways were single doors). The disabled toilet was huge, more than enough room for me to turn the wheelchair around. Another bonus was that it wasn’t being used as a storage area which happens more times than I would care to mention. We also managed to bag the disabled parking spot right outside the factory.

 

This is all I can write for a minute as I really need to recover. I also managed to forget that Wednesday was my birthday – as in I would only have Tuesday and Wednesday to write this week!

 

So here are some photo’s from our day at the factory.

This is where the clay delivery comes into the factory.

These are mugs that have been removed from the molds.

 

Discarded Clay. Nothing is wasted and this will be used again.

The factory doesn’t just make mugs but also teapots, butter dishes, jugs, dogs and cats! To name a few things

 

We also tried our hand at decorating in the pottery cafe. I used sponges painted with ceramic paint for this salt pig. This type of decoration is known as (in my case badly done) spongeware.

A trip of a lifetime

 

Next week hubby and I will be visiting the Emma Bridgewater Pottery factory. It’s a trip that we decided to take around two months ago. We never thought we would get to visit it so soon. We always had thought we would have to wait for a few years before we made the trip as we would “have” to do it over two days but we decided to bite the bullet and just do it in one. It will probably leave me quite sick, there may not be a blog post next week, if the exertion hits me really hard. However I am determined to enjoy myself and live with the consequences.

 

 

A trip even for an able-bodied person can involve lots of planning, as the whole thing has seemed rather surreal to me I hadn’t really started thinking about the trip and the reality of it until yesterday. Now my lists have lists. I did order a road atlas as we are old school and don’t use a sat nav. Our road atlas was invaluable on a trip many years ago when we were on our way back from a family christening in Norfolk and the M25 was closed. I took on the navigating responsibilities and got us to the M4 by going the scenic route rather than sitting for hours in a huge tailback. Also last week I finally printed off the directions from the AA Route Planner – both there and back (I have made that mistake before!) The tickets have also been organised and placed in a folder. But that is just the tip of the iceberg of stuff that needs to be done.

 

 

Due to the sheer volume of medications I take, I have had to try to come up with a working solution of taking extra meds with me just in case I need them. I really didn’t want to be lugging around a full-size 300ml bottle of morphine when I may in the course of the day take only 20ml. Same as I don’t want to be taking 200 paracetamol or a blister pack of ten slow release morphine tablets. My handbag will resemble a pharmacy if I am forced to take all these things, I already have a print out of all my prescription medications which I carry at all times. It really is a pain in the arse having to be so thoroughly bloody responsible but the consequences would be awful if these things weren’t properly managed. Not keeping on top of my pain medications means I can be in agony for 48 hours until the situation is back under control. Even when I am having a good time I can’t forget my pain meds as further down the line I will be jolted back into reality with searing joint pain.

 

 

The anxiety levels planning for this trip has induced are off the charts. I am an anxious person by nature but it had been under control for many years just raising its ugly head anytime I was more stressed than normal. Since giving up smoking though my day-to-day anxiety levels have increased. Anything and everything is setting me off, even the most basic things can leave me doubting myself or working out the worst case scenario of every situation, what I call catastrophizing. However unlikely the catastrophe maybe likely to happen. It’s a horrible way to live as it makes you so desperately unhappy. You spend your whole life ignoring the here and now, worrying yourself sick about the future, something which you have zero control over. It literally sucks the joy from any situation. So even though the anxiety about this trip is causing me sleepless nights I am determined to go, to prove to myself that I can live in the moment and enjoy myself. If my anxiety levels don’t settle down after this trip I am going to have to make an appointment to see my gp as this level of anxiety isn’t normal. It’s not my normal.

 

 

With 7 days to go until my trip ( it will be less again by the time this is published)  my lists have lists. Writing lists does seem to soothe my anxiety until 1am when I wake up most nights in a panic about something or other. Thanks to the Lush Sleepy lotion which I blogged about here , I am getting off to sleep much more easily. It is just staying asleep that seems to be the problem. At least now, well during the day I will have a list I can check and re-check, to ensure I have planned for every possible outcome. When my mind is occupied with writing, crafting etc it is easy to feel calm and in control. The waking up in the middle of the night is just frustrating because that is now actually starting to make me ill, due to the lack of sleep. I am now panicking about not sleeping properly the night before we go…….how bloody stupid is this? If I keep worrying about it, it will become a self-fulfilling prophecy. Thank god I can function on the minimum amount of sleep and I think the adrenaline alone will keep me going for this trip next week.

 

 

Next week is going to be quite hectic with our trip to Stoke-on-Trent and both of our birthdays. So if there is no blog post next week you will know why, it’s because I am utterly exhausted. I will try to get something out even if it is just a photograph from the day but I won’t be pushing myself. I am sure you will understand as I will be recovering from my trip of a lifetime.