Thursday, 16 November 2017

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.


Thursday, 9 November 2017

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.




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.

Pint mug


salt pig


Jays 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



Tiny Christmas Tree Decorations

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.