Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better.
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
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!
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.
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.
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.
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.
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.
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.
There were six of us in our tour group and it took us a good hour to get around the whole building.
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
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.
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.
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
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.
It’s 13.20pm on Tuesday 17th October and I am here stressing to high heaven because at 14.15pm I will be in the dentist’s chair. Like every single person I know with EDS, I hate the dentist. I am only going today so that I don’t get kicked off the list and end up without a dentist. The last time I was there it was a nightmare, which you can read about here in my post Blind Panic . I am still really angry that he didn’t listen when I told him local anesthetic wears off on me very quickly. He obviously thought he knew better. I ended up chickening out of the hygienists appointment because I was having panic attacks a week before it was due. So today could be very interesting.
A few months ago one of my back teeth disintegrated when I was eating some chocolate. I wouldn’t have minded but I was nibbling at it with my front teeth when the back molar (upper right 7 I found out this afternoon) decided to just fall apart. I know the dentist will want to fuck about with this tooth, be it a crown etc but he will be told by me that I want it pulled if he wants to play with it. I don’t do root canals or anything other than a straightforward filling with my teeth. The reason behind this is I have a shockingly low pain threshold when it comes to my mouth. Anywhere else on the body I am an absolute trooper but I never get adequate pain relief when they are messing about with my teeth. At 43 I believe I am entitled to call the shots when it comes to my teeth.
I know some of the low pain threshold with my teeth is caused by the abject terror and stress a visit to the dentist causes me. Me and Dentists have never got on, probably because for a lot of my life EDS hadn’t been diagnosed, it didn’t seem to matter to the dentists treating me if there were tears rolling down my face and I was screaming whilst they were carrying out treatment. I was to be ignored because I’d had anesthetic, so I couldn’t possibly be feeling anything. The problem was I felt everything. Now the association is set in my mind that whatever the dentist does will mean pain to me. My last dentist was brilliant, very patient and understood EDS. She had got me to the point of not being absolutely terrified, which was quite a step forward. Unfortunately she has left the NHS and now practices privately. I am hoping today that I will be able to find out where as I need to build my confidence back up and hopefully get her to have a word with the guy that is my dentist now. I am hopeful that due to me almost ripping the drill out of his hand last time that it was enough of a frightening experience for him as it was for me that he takes me seriously. But it’s been a long time since I went…………..deliberately.
There has been a lot going on here, decorating, a trip planned and me being much more unwell than usual. I had a very bad flare up of Hidradenitis Suppurativa which then had an impact on my hemifacial spasms (**sarcasm) no really it affected my MG like symptoms really badly, (I have been exhausted, very weak muscles and ptosis coming on within 2-3 hours of taking mestinon). I have been on mega doses of antibiotics trying to avoid any surgical intervention as this is the worst flare up I have ever had. I am still not out of the woods as the antibiotics are due to finish shortly and the abscesses although have reduced in size are still there. If I could get out of going to the dentist today (not due to fear) I would have as I am utterly exhausted again today.
I am going to have to go and sort myself out ready to leave. The time is rapidly approaching for my appointment. I will let you know how I got on when I get back.
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The good news is I am still alive the bad news is I need a filling on the tooth that disintegrated. It was quite amusing as the dentist didn’t remember me, so I gave him a brief overview of our last appointment. Which he laughed and then checked the notes, saying “oh my goodness yes, I don’t remember it but it’s all here!” . I explained to him again that I am an absolute wuss when it comes to dental work. I told him that I believed a lot of it was psychological due to years of painful dental treatment when I haven’t been believed when I have told the dentist I can feel whats going on. That I now have a deep anxiety about the dentist and that I had chickened out of going to the hygienist in March because I had started having nightmares two weeks before the appointment.
I still don’t think he 100% appreciates how very difficult it is for me to attend appointments just due to the fear but he was so gentle today, a completely different bloke than last time. Not that he was rough last time but he had a different attitude. Half way through the appointment he said “You can’t have adrenaline in your injections can you?” to which I nodded as his fingers were in my mouth. He said “ I remember you now, you faint if you have the adrenaline” again a gurgle and a nod for a reply from me. Obviously there aren’t too many of us that actively request no adrenaline.
I have to go back the second week of November for my filling, which is fine by me. It gives me a chance to chill out a bit after this appointment. I am utterly drained of energy now. I was better this time on the lead up to the appointment probably because there is currently so much else going on, I couldn’t sit and focus on it. Of course in three weeks I will have to go through all the stress again knowing I am going to have to have a filling but that’s life.
On the way home Jay said “I just don’t get why you have such a low pain threshold at the dentist and why you get so anxious, you’ve had lumbar punctures and all sorts of horrid procedures done without adequate pain relief” I agreed but as I have said I think it is a lifetime of painful dental treatment that has left me like this. He knows how hard it is for me to go and was telling me how brave he thinks I am for going. If I could get away with not going I would but I can’t having had dental abscesses before I need to be on a NHS dentists list.
Being a grown up really sucks sometimes.
A few weeks ago an incident happened that has happened many times before to me on social media, I was hit on by a complete stranger. They seem to all go to the same school of charm, as the same phrase is always used. I was told yet again “Btw (by the way) your profile photo is really sexy”. This always makes me roar with laughter as my profile photo is usually one of my dogs. I hate having my photograph taken and I rarely post photos of myself unless it’s of me with ptosis The men that use this phrase clearly don’t actually look at the profile picture they are sending this crap out to or they really do need glasses!
My husband had no idea how often this happens to me, I simply hadn’t bothered to tell him. I am probably like most women, so used to this crap that it really doesn’t bother me anymore. I might find it creepy some days but I usually send the person back quite a rude response and immediately block them so I can have no further dialogue with them. Due to my position as an admin on a Facebook group, I have to set my messages so that I can receive them from anyone. Facebook naturally filters them for me into people I am friends with, those messages go straight into my inbox and people I don’t know come up as message requests. Thankfully I can preview these without the other person knowing, so that should I wish to I can decline them.
However a few weeks ago I had the same issue with “your profile picture is very sexy” but this time it wasn’t a stranger, out of the blue. No this was during a serious conversation I was having with an admin from another group. I had contacted this admin as a favour as I had joined his group only to see that there was an ex member of the group I admin in there. This member had been removed due to his aggressive and confrontational / rude behaviour and I could see that he was up to his old tricks in this new group. As a favour I thought I would give this admin the heads up. Oh how I wish I hadn’t, the conversation started up normally enough and then out of nowhere came the creepy statement. All respect I had for this gentleman left me right there, why would you do that ? and why on earth would you think that was ok?
Why is it that men seem to think that the internet is just another way to be pervy to women? What did this man, let’s call him Chris think I was going to say after he told me my profile picture was very sexy? “Oh thank you kind sir, let’s run away together?” At the time I just said “erm thanks the photo is of my dog’s nose” I exited the conversation quickly after that and I am happy to say he hasn’t contacted me again.
Now if he did this to me and he barely knows me, literally we are in the same health issue group, what is he doing to women in the group he helps run? Women who he knows are vulnerable, to me that is the behaviour of a predator. Unfortunately it’s not the first time I have heard about a male admin or husband’s of an admin taking advantage of their position to gain sexual satisfaction. It really brings it home to you that you should never blindly trust someone on the internet, I am always quite cautious but even I have had occasions where I have let my guard down and been punished for it. However it is usually females that take advantage of me, by monopolizing my time, asking highly personal questions and then when I tell them that I won’t answer that question, I have had them get extremely nasty with me or make out that I am taking offence for no reason.
The male pervs I can deal with, as I say they normally get a special message back from me. It’s the females I find incredibly difficult to deal with, sometimes it can take me years to stand up to them. I never divulge things I don’t want to, I won’t be bullied into that. I seem to attract the ones who are emotional vampires, who are in competition with me as to who really is the sickest them or me. Anyone who knows me knows that I really don’t fucking care who is the sickest it’s not a game I play. They are the ones that only ever talk about themselves and when you look back at the messages you have from them you see that they rarely ever ask you how you are doing.
I write a blog, I give information away freely it’s something I chose to do.I also control the information that I share. I also understand that people will contact me as part of that. 99 times out of 100 I have no problem at all with the people who contact me and I am more than happy to help whenever I can. The downside is even though my blog audience is pretty small by the grand scheme of things and my page only has a hundred or so followers on
Facebook. I do seem to attract more than my fair share of weirdos. I have been asked for money, I have been asked if I want to join an investment schemes but the ones that really get my goat are the ones that steal my time. They are the ones that message me incessantly for days on end, that claim to be big fans of my blog but the questions they ask prove time and time again they’ve never read it. They are also the ones that claim to know all about my illnesses, yet the things they say prove they don’t. I try so hard to be polite and kind to everyone I encounter online but some people think that gives them the green light to walk all over me or to ask deeply personal questions. When I point out that I won’t answer the question and why, I am belittled through mocking apologies. Yet when I stand up for myself and tell these people to sling their hooks I am the one left feeling bad about it. I just can’t win.
Some of these encounters make me want to just shut down all my social media accounts and run away. But then I think to myself why should I be the one to suffer? All I have ever done with my blog is try to tell my story and hopefully help others who maybe at a different stage of the journey. The majority of my online encounters are lovely it’s just the odd one or two that leave me with a bad taste in my mouth. It’s the odd ones with a problem not me!