Adulting

Well it seems that the universe isn't done with fraying my nerves. 24 hours after last week's blog pots was published we found out that our car was in need of some expensive repairs. The repairs were going to cost more than the car was worth - just the cambelt change we had been advised would cost us £400 with the best case scenario. On top of that we needed to get the mid section of the exhaust repaired as Jay had gone over a stick or stone and that had removed the exhaust from its mountings. It is at times like this I really can't abide this adulting shit. I wish sometimes that someone else would swoop in and fix it all but then that would mean I wasn't an adult at all. At 45 I need to realise the days of someone swooping in have long gone.

Being nervous about my tooth extraction went out the window. Instead Jay and I had come to the realisation that as much as we loved the car we have that this was probably a slide into it becoming a money pit. With one of the hospital consultants I see an hours drive away we need a reliable car. Other than trips to the hospital we do very little mileage. But I can't be sat at the side of the road waiting for the breakdown service. 

I did a quick search online - this has been how I have found the last two cars. I thought I had found something ideal a silver Peugeot 207 Estate. It looked in good nick, nothing on there was screaming out to me. So rang the garage and this is where its gets bizarre. This garage was advertising on several well known sites yet when the phone was answered it was answered with just a "hello" not a "Hello XXX garage". Initially I thought I had dialled the wrong number, so I asked if I had rung the garage, to which there was a bit of a pause and the guy at the end of the phone said yes. I then proceeded to ask him if the car was still for sale and if it had a recent cambelt change, full service history. The answer I got was yes the car was still for sale but he didn't know about the cambelt or where the paperwork for the car was. The bloke sounded strange but I put it down to maybe he just wasn't the full shilling. I should have taken a breath and realised how dodgy this all sounded. I mean a garage who answer the phone without telling you the name of the business, a car for sale ( and they only had 4 advertised on all the sites) and he didn't know where the paperwork was. However I was stressed, I wasn't thinking straight and we needed a car. Jay was dispatched by Taxi to the garage.

Whilst Jay was on route something was nagging at me about the car - my brain had finally engaged. So I did a background check on the cars history. Its cost me 50p and I could look up 5 different cars should I want to. What I found out concerned me, the car had not been on the road since 2017 ( which would mean an 8 year old car in 2017 hadn't been able to be sold). It had failed its 2017 MOT and the list of fails and advisories were shocking. Ok I admit I had to google what half of them meant but even I knew a sub-frame failure wasn't good. I messaged Jay and told him to come back. He messaged me back saying they hadn't been able to find the garage - another bizarre thing, as the guy on the phone had told me the full address was on the website. However Google Maps had never heard of this garage. Thirty quid lighter and very stressed Jay got home with a migraine. He had to sit outside in the cold for a while, whilst I got him some pain killers and anti-sickness medication. He really did look rough.

So back to the computer I went, our options were being dictated by what was nearby and what boot size the car was as I have a mobility scooter and a wheelchair that I need to be able to put in the back. Most cars other than estates and people carriers just don't have that kind of space. Just when I was about to cry with frustration I discovered a small garage 12 miles away that had a Renault Grande Scenic for sale, this was the next model up from what we currently drive so we knew the boot space was going to be ideal. I showed Jay the photos and I then rang the garage. This time I was told the name of the place I was ringing, which was a good sign! I then had a chat about the car and asked if the cambelt had been changed. The guy said no but it would be changed before we bought it. 

I did another background check it was 22 days without an MOT and probably about the same for car tax. I looked through its MOT history it had passed it's last MOT with no advisories ( for those of you in the USA etc who are unfamiliar with the UK system cars have to be checked every year by a garage after they are 3 years old. This is to check it is safe and its emissions are compliant with the law. Advisories are things the garage notes that tells you although it didn't fail the MOT on those points they will need repairs before your next MOT.) It had failed MOT's in the past but all the work needed to ensure it passed and all the advisories had also been addressed. 

The problem was we had been advised that our Cambelt could go at any moment and we were only using the car now for essential travel. Where we needed to go was out in farming country and was down tiny single track roads. Should the Cambelt go out there we would effectively be up a certain creek without a certain paddle. Thankfully my parents had text me to let me know that they were up at their caravan ( about 3 miles away from us) so I rang them and explained the problem. They came to the rescue with my dad taking us over to the garage to have a look at the car. We took Dembe with us and he was such a good boy, as he isn't brilliant in the car as he can whine a bit but he barely made a sound.

As we pulled up the the garage I could see that the owner had pulled the car out onto the tiny forecourt for us. Believe me I have travelled an hour to see a car at a garage in the past and found it at the back of the lot hemmed in by other cars despite them knowing we wanted a test drive! So that was another tick in the box. We had a look at the car, it was perfect for us. The boot was enormous and technically it is a 7 seater as there are two folded down seats ( completely flat ) in the boot. The car is big enough to take Dembe's crate and my mobility scooter un-assembled. My mobility scooter comes apart so it can fit in the boot of a car. 

As we were happy with the car the deposit was paid and now we play the waiting game. The car needs an MOT and whatever work needs done for it to pass, if it needs any. It will be having a full service, the cambelt changed and the rear drivers side passenger window fixed. It's an electric window which isn't working, not that we open the rear windows with Dembe in the back. 

I am now going stir crazy as although Jay is still using our current car to take Dembe up to the common for his walks, I am not going with him as if the car breaks down I can't walk home. I don't have the ability or strength to walk should that happen. So I am currently going stir crazy as I haven't left the house since Friday afternoon. Normally I go out of the house in the car about 5 times a week. That drive out onto the common, even though I just sit in the car, keeps me sane. It gives me something different to look at. I am at the point now where I just can't wait to get outside. Of course this week I had a load of appointments my hospital appointment was booked for tomorrow so that has been cancelled. I was supposed to be at physio today but again its been cancelled due to not wanting to drive the car that far. The only appointment that is still going ahead as planned is my dentist appointment Friday for my tooth extraction. If we don't have our new ( 2nd hand car) here by then I will take a taxi. 

Whilst sorting out the replacement car I ignored the fact that I had a UTI brewing, which caused me loads of pain over the weekend and I am only just feeling back to normal now. Thankfully I already had antibiotics in the house so as soon as I realised it wasn't just an irritated bladder I started taking them. So Saturday afternoon I ended up having to go to bed as I felt so ill.

So we are on the countdown now to getting the car, I just can't wait to get outside and see something other than my home and the garden!

what's a cambelt?

What are your aims with this appointment?

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

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

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

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

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

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

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

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

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

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

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

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

It would be you

Yesterday was our 18th Wedding anniversary, we celebrated in style with a planned trip to hospital where I was booked in for a short Synacthen test ( as my cortisol levels were low or rather were in 2015 but my old consultant had never bothered to conduct this test and I had found this test result on going through some old letters) and a caffeine infusion. As this had all been booked in last Thursday by my hospital consultant we had presumed things would go smoothly. How silly we were, nothing ever goes smoothly for us.

The short Synacthen test is supposed to be conducted at around 9am in the morning when your baseline cortisol levels are at their highest. In 2015 I had been tested at 10.15 am just to check out the level. The cortisol level was found to be 107, I have written about this in a previous blog post. Basically my old consultant had said in a letter to my GP that he would run the short Synacthen test.....like a lot of things he said it never came to fruition. He promised to do a lot of things and never actually did, which amongst many things was the reason why I left his service. When I showed my new consultant ( new as in from December 2015) this letter the test was booked in for the following week.

When we arrived at the hospital yesterday immediately we asked about getting the short synathen test started and no one knew anything about it. I had to keep asking for anyone to take any notice. In the end they had to ring my hospital consultant to confirm he wanted this test to be completed. This was not my consultants fault whomever was supposed to have booked this onto the system hadn't. The caffeine infusion was showing but not the shirt synacthen test. There were also issues with the caffeine infusion as the drugs had not been brought up from the pharmacy. So before we even got started the phrase piss up and brewery were already rattling around my head.

you can find info on the test here https://www.netdoctor.co.uk/medicines/liver-kidney-urinary-system/a7597/synacthen-tetracosactide/

A set of obs were done and then they said that they would put a cannula in and send me off for a coffee whilst we waited for the caffeine to arrive and my consultant to confirm he wanted the Synacthen test performed. I had to shoot down the idea of putting a cannula in early, its been done many times before and all that happens is it either blows or the vein collapses and the site can't be used. We then have to go back through the fun of finding a vein that will co-operate. Thankfully after the staff talked  with the duty doctor, I was believed and the attempt at getting a cannula in early was dismissed. 

The time was now 9.50am, we had left the house at 7.20am, our dog sitter had to arrive at our house at 7am. The promise that we would be home by 1pm was starting to fade. The short Synacthen test takes an hour, the caffeine infusion takes two hours. We'd been at the hospital for an hour and were no further on than when we first arrived. Jay wheeled me down to the cafe where the queue was out the doors and there was no spare tables. Jay got us a drink from the newsagents and he got himself some breakfast in the form of a pasty. We got back to the waiting room at 10.30am. At 10.45am I told Jay that if we weren't in the treatment room by 11.30am I was leaving. My head was having a bad CSF leak headache day. Being in a wheelchair means I can't lie down and the chairs in the waiting room all had arm rests so it meant I couldn't lie on those either. I tried to distract myself by doing some embroidery but the pain was making it harder and harder to concentrate. At 11am I asked Jay to ask the nurses if I could have some pain relief, just some paracetamol and oramorph. Normally I would bring my meds with me but for some reason I had forgotten.

At 11.20am I sent Jay into the treatment room to ask the nurses if there had been any progress on the caffeine infusion, I had given up on the synacthen test taking place. We were told it was all ready for me and to come on in. The nurse in charge brought me over some pain relief two paracetamol and codeine. It really pisses me off when hospital staff who despite seeing your prescription list decide that your pain doesn't warrant what you would take at home. I hate the fact that hospital removes all autonomy, I manage my conditions better than any doctor or nurse ever has, yet when I go there they assume they are the experts. I pointed out that should I take the codeine I wouldn't shit for a week and yes I used that language - because I had been sat in my wheelchair for 2 1/2 hours at this point and was in a serious amount of pain not just from my CSF leak but also my hips and spine. The codeine was binned and I got the oramorph I had requested.

I was then informed that they were going to now do the short synacthen test. Looking back now I believe they still didn't have the caffeine from the pharmacy at this point and were doing this test to pacify me after basically doing nothing for the last two hours. You can imagine the shit they would have given me if I had rolled in 2.5 hours late for my appointment yet the same courtesy wasn't extended to me. I am a massive supporter of the NHS, I am terrified at the Tory dream of turning it into an insurance based system but when there are 8 staff stood around chatting - and no it wasn't about patients then you see that something really needs to change. I don't want patients to become consumers or clients but I want them to be treated with the same respect that the doctors / nurses all seem to demand. They don't seem to realise that there is a life for the rest of us outside of the hospital.

The first attempt at a cannula site was a bust, the vein blew . This was the state of it last night, the bruising is much worse this morning but thankfully it doesn't hurt

The second attempt was fine but as soon as the Synacthen was injected I didn't feel right . Sometimes I can feel a bit weird / light headed when blood is being drawn or I am getting an injection. Within a few minutes it usually passes. This however didn't pass, I started to feel sick and dizzy. Then out of nowhere my face started to burn, it felt like it was bright red and was stinging. I said to Jay "is my face red?" he replied " yes it is but it's very hot in here", I tried to let the growing sense of unease go but at the 15 minute mark when I was feeling more and more out of it I asked Jay to get a nurse and let them know I wasn't well. All the sounds in the room had become too loud and I could smell a very strange smell, like cooked liver and over boiled veg. I kept complaining to Jay about it but he couldn't smell it.

After seeing them stood around quite a bit all morning suddenly all hell broke loose. My bed was surrounded by 6 staff including the treatment room sister. My Obs were being done and piriton (IV) was drawn up. My normally low blood pressure that sits at 100/70 -90/60 was now 147/98 unheard of for me. My body temperature was now 37.9 having been recorded at 36.6 at 9.30am. My pulse was irregular at racing at 91bpm. I told the Sister that my blood pressure is never high and was told I was anxious due to having an allergic reaction. I couldn't be bothered to argue as I was very frightened because I just felt so very unwell. Initially the IV piriton helped but after 10 minutes I could feel the reaction starting to come back as my face started burning and I started to feel very ill again.

Jay went and got the nurses attention again and I was given IV steroids. I have never had a reaction so severe that I needed steroids. This had been my worst reaction to date. Within 20 minutes of the IV steroids I was back to normal but then we had to wait around and be observed to ensure that the reaction didn't start up again. I was fully checked over by a dr and at 1.50pm 5 hours after we arrived I left the hospital, with no caffeine infusion. I declined the infusion as I just wanted to go home and the staff were also concerned that although I have had the infusion before after reacting to the synacthen it was more likely I could have another bad reaction.

We finally made it through the front door at 3pm. A few hours after being home I emailed my hospital consultant who told me in all his years of being a doctor I was the first patient he has known to react to the synacthen test and then he said " it would be you". Basically if there is a weird reaction to have I'm your girl. He also backed the decision not to have the caffeine infusion.

I have been left with raised red bumps / rash on my face which always happens after I have an allergic reaction. That will fade over the next two weeks and I will get very dry skin which will peel off as the rash is fading. It's a bit sore from being so dry but its still nowhere near what I went through yesterday.

This morning I am feeling like I have been run over by a bus. My HS has flared up on both sides of my groin so that is extremely painful and my joint pain is through the roof. I will be taking it very easy over the next few days.

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.

This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God's green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger

It's funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.

However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone's feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.

I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”

The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.

I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said

“Good things come to those who go out and fucking earn it”.

An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.

As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.

He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.

”Nobody else on God's green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.

Arnie and I part ways when it comes to the remainder of the quote - “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer's that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.

Pain the type that EDSer's live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?

Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.

The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.

******************************************************************************************

Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.

On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.

So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.