Neurology appointmet

Today (Wednesday 26th October 2016) I saw my Neurologist for the first time since June. I had to cancel an appointment at the end of September due to hubby being too sick to drive me there. It was a nightmare of a journey.

We normally use a road called the A30 and then turn off and use the A386 into Tavistock. All was fine until we turned off the A30 and went down the slip road to turn left only to find that the road was closed for road works and completely coned off. Jay and I don’t really know this area so we had to follow the signs for the diversion, although in usual Highway Agency style, the signs were small and made zero sense.

We ended up back on the A30 travelling towards Cornwall when we saw a turn off for Tavistock coming up. Tavistock is where the neurology clinic I attend is held and it is a small cottage hospital. As we drove the first few hundred yards down the road we came across a sign that said Welcome to Cornwall. Jay and I freaked out as it was now 10 minutes past 10am and my appointment was at 10:30am. We had no clue where we were or how long it was going to take us to get back to Tavistock.

I would have liked to enjoy the countryside but we were both stressed out looking for road signs that may give us some indication of where on earth we were. A few minutes later we found out we were in Launceston and we passed an area I recognised from years ago when we used to visit friends in the small village of Stoke Climsland.

We made it to Tavistock hospital with 4 minutes to spare and the Gods were obviously smiling on us as we pulled straight into a disabled parking spot. Normally the drive from Exmouth to Tavistock only takes us 70 minutes however with the diversion it took us nearly 90 minutes on roads that were single carriageway and the majority of the time a 30mph speed limit. I am glad that we always set off early giving ourselves at least 90 minutes to get there.

Thankfully we didn’t have to wait long to be called in and I saw my consultant rather than one of his registrars. We had the normal quick catch up on how I was doing, did I respond to the caffeine infusions etc. Then he apologised profusely for the fact the epidural blood patch hadn’t been performed at the end of June. He explained that the anaesthetist had been onboard with doing it before they asked me to come into hospital on 28th June but once she had read my notes and had seen how badly I am affected by EDS, she had declined.

I told my consultant that naturally I had been devastated at this turn of events and that it seemed rather kafkaesque to be in a situation where I have EDS, EDS has caused the leak but the anaesthetist won’t perform the epidural blood patch because I have EDS. He did more or less admit that this was a crazy situation to be in. That if he had known that she would back out that he wouldn’t have admitted me to hospital. I have never known a doctor apologise so much, at the time I had been left feeling that somehow I was to blame for the epidural blood patch not taking place, when I had been dealing with the registrar. However I did point out that if someone is going to be sticking a rather large needle in my back I need them to be confident in what they are doing. There are many things that could go wrong with this procedure, I could be left with a numb leg, permanent pins and needles etc but all of these side effects pale in comparison to what I am living with at the moment. Where I am not truly living but just existing. I was quite clear with him that I cannot continue to live like this and he said “no you shouldn’t have to when there is a procedure that could stop all this”.

I also thanked him for being on my side and not giving up. I expressed my fear about going to the National ehlers Danlos unit and that they would tell me the head pain was a) Migraines or B) NPDH (new persistent daily headaches). He said if they did then he wouldn’t believe them and would continue to push for me to have the epidural blood patch.

He asked me if he had told me about migraine lenses and I said he hadn’t. He said that there was a place in Plymouth connected to the university that make lenses for glasses that cut out certain wavelengths of light. I constantly have to wear dark sunglasses as light really hurts my eyes and it can be a way for me to prevent my head pain getting worse if I wear them. The centre in Plymouth has a range of lenses that cut out the different types of light and by visiting them they could test my eyes and workout which wavelengths affect me the most. They are called migraine lenses as many people who have bad migraines are light-sensitive, by using these special lenses they can reduce the number of attacks they have. I don’t think this will be on the NHS and I dread to think how much these lenses are going to cost but it means I won’t look a dick all the time by wearing sunglasses indoors during the winter months then I will go for it!

We were in and out in ten minutes but I was glad of that as I was just so bloody tired after the stressful journey. We went home via Plymouth, which is actually a longer journey but the traffic wasn’t too bad and we made good time. I am just writing this blog post and then crawling into bed as my head is kicking off with being sat up for so long and I am just bone tired with sitting in the car for 3 hours and 40 minutes today. I dread to think what I am going to be like after our trip to Bath, where the EDS unit is. It’s probably going to take me days to get over that trip.

Ten Years

On Monday 17th October it was ten years since you left us. I can’t believe you have been gone so long yet there are days when I still completely lose my shit and sob my heart out.

Some my might say “It’s only a dog” or “You should be over it by now” if that’s the case then stop reading because Travis was never just a dog he was our baby and his loss has permanently scarred my heart. I have never been able to love our other dogs the same way in which I loved him. I always hold just a little bit of my heart back because the pain of losing him made me scared that I would never be able to carry on, when we lost another dog.

It is silly really as when you take on a dog or any pet you know that they will only live for a set amount of years. That you will inevitably outlive them, it doesn’t stop you loving them and that love blinds you to the pain you will eventually feel when they take that trip over Rainbow Bridge. I still can’t read the poem Rainbow Bridge without sobbing. In fact I am already crying now just thinking about it, silly sentimental sod that I am.

I have tried not to let the overwhelming sadness that I feel in October over take me this year and for the most part it has worked but as the 17th approaches I am filled with dread. No one except an owner remembers the date a beloved pet passed, if we are lucky we are “allowed” a week of feeling sad when it occurs but after that we are supposed to just pick ourselves up and pretend it never happened. Grief around the loss of a pet is only just starting to be spoken about due to books and newspaper articles. There are those who are still incredulous that the death of a pet could have such a profound effect on a person.

I am not going to look at Travis through rose tinted lenses, from the age of 6 months he was sick until he passed just before his 3rd birthday (28th October) and that was very stressful on all of us. It is hard to believe he would have been 13 at the end of the month if he was still with us.

Travis could be a shit bag, which is part of the love I have for him. No one was as naughty as him, although he wasn’t as destructive as his sister Mollie, whose chewing knew no bounds, he was very head strong,  food and drink thief, had zero recall ability and embarrassed me in more ways than I could possibly imagine. Here are just a few examples of his naughtiness that I still cringe at

• I had witnessed a car accident and a police officer came to my house to take a statement. Travis drank the police officers tea (whilst the cup was in his hand) and then stole the guy’s pen, whilst he was writing my statement and refused to give it back.

• Whilst walking on the common with my husband, Travis stole a radio from a Royal Marine recruits backpack. It took 4 Marines and my husband to chase him down and get it back.

• Travis was obsessed by body piercings, unfortunately we had a friend who had her nipple pierced, Travis used to nuzzle her breast the whole time she visited. He was similarly obsessed with my belly bar.

• He once ate half a birthday cake before I had even got it on the table to wish my friend happy birthday. He took the side of the cake as I was placing it on the table in front of her.

• He once attacked a Royal Marine Land Rover, making off with the mud flap.

• Another Royal Marine incident (we were well known to them by now!) walking on the common one evening with Mollie (Travis’s sister) we came across a tray of sandwiches and pasty’s just lying on the ground. The dogs ate the whole lot, the Marines were on the opposite hillside and could see their dinner disappearing down by dogs throats. At one point Mollie was running around with a carrier bag on her head whilst eating the contents. I have never left the common so quickly. The next day Mollie shat out two pasty wrappers.

• Travis and Mollie managed to open the kitchen cupboard door whilst hubby and I were at work and helped themselves to 5kg of Gravy Bones and a box of bonios in one sitting.

• When visiting friends with cats (Travis was great with cats) we would have to ring them in advance and ask them to move the cat food bowl to a place where Travis couldn’t get it. Shoulder height was the required level as otherwise he would eat the lot.

• At puppy training classes it was our turn to demonstrate Travis’s recall (which had been going well at home). Jay walked to the end of the room with Trav whilst I stood at the other end. I called his name probably ten times and he just sat stock still beside Jay. It wasn’t until I shouted “I’ve got cheese you greedy bastard” that he came back to me, much to everyone's amusement.

• Travis loved his walks so much that if he figured out we were on the homeward stretch back to the car he would run off. Short walks would turn into an hour or more’s adventure whilst I tried in vain to catch him to get him back on the lead. In the end I would have to put him on a lead much earlier than I wanted to just to ensure I didn’t end up chasing him around forever.

• On one of the occasions where I hadn’t managed to get him back on a lead, he jumped into the back of a  strangers car. This would have been ok, had he not been covered in mud and my fellow dog walker didn’t have a pristine car (very rare in the dog owning circles I move in!). Thankfully the guy did see the funny side of it.

• Travis once nicked the sunglasses off a dog sitters face and proceeded to chew them up in front of her. He also nicked the same girls flip flops. I did pay for the damages but it was incredibly embarrassing as she had size 9 feet which meant it was incredibly difficult to buy replacement flip flops.

• Coming up a steep hill whilst walking on the common I bumped into a Royal Marine who chatted away to me as we walked. As we approached the top of the hill there was a unit of recruits receiving a beasting (punishment) and were being made to do press ups. I asked the sergeant walking with me if he wanted me to put the dogs on the lead (I had Mollie and Travis) as they would bother the recruits. Gleefully he told me it wasn’t necessary. Travis and Mollie then licked the faces of every recruit whilst they did push ups and they weren’t allowed to do anything but the push ups or receive more punishments. I didn’t have the heart to tell the sergeant that they’d both been eating horse shit just 20 minutes earlier.

• I have saved the absolute worst for last, if you are eating I would advise you to stop reading this now. *************************************************************************************************************************************************************************On yet another walk on Woodbury Common, Mollie and Travis disappeared into the bushes and it seemed to take an age to get them out. I didn’t think much of it and carried on  walking. When we got home they were both fine, I settled into my routine of doing the cleaning and then going on the computer. All of a sudden I was hit with this horrific smell, it smelt like public toilets / blocked drains. It had a real stench of raw sewage about it. I searched high and low and couldn’t find where the smell was coming from so I presumed it was coming from outside, possibly a farmer was muck spreading on a field nearby. The smell continued to intensify, so I again investigated where it was coming from. On going into my bedroom, I was confronted with a lake of human shit. I knew it was human because there were identifiable lumps in it. Whilst Travis and Mollie were in the bushes they had eaten the contents of a latrine (from where the Marines train on the common). It was all over my bed, the duvet cover, the duvet (comforter in the USA I believe) the sheets, absolutely everything. How I didn’t puke on the spot I have no idea. It still turns my stomach just thinking about it. I grabbed everything very carefully off my bed and took it downstairs putting it in the washing machine on a boil wash. It took five washes to remove the mess. I now look back and think why didn’t I just bin the lot but then sat in a black bin bag for a week it would have continued to stink, so I did the right thing.

There are so many naughty stories I could tell you about Travis, to look at him you wouldn’t have thought butter would melt in his mouth. Compared to the three dogs we have now Mollie, Willow and Frankie he was a nightmare. It didn’t matter how many training classes he attended he was still a little shit. He wouldn’t even behave for the dog trainers, yet I wouldn’t change him for all the tea in China. He taught us so much, compassion, how to love something more than you ever thought possible and how important it is to cherish your fur babies every minute of every day.

So although it’s October and my heart is heavy with the loss of you dear boy, I am glad for the short time we spent together. Although it is still sometimes so raw and the grief bubbles away under the surface, your character filled those nearly three years with utter mayhem. You certainly kept us on our toes.

Until I see you again, rest in peace my baby boy.

Travis Morris

28th October 2003 - 17th October 2006

Caffeine Infusion #4

Last week I under went caffeine infusion number 4 and so far the results have been very good. I know I am probably going to regret typing those words in probably less than 24 hours but I can’t lie, I have had a number of days with no head pain. Even hubby has remarked how much better I have been. Although it seems I have picked up a bug of sorts whilst there, since the infusion I have been racked with joint/ muscle pain, sore throats and levels of fatigue that have been off the chart.

It’s really weird but every time I attend the hospital for the infusion I get the same chair. There are 6 chairs in the bay but every time I get the middle chair on the right hand side of the unit. This time the bay was incredibly busy and noisy which I found very draining. Since getting sick I find situations with lots of light, noise and people incredibly difficult to cope with. I don’t know why this is but I seem to burn through any energy stores that I do have. I was in a very bad way when I attended the hospital this time, I was unable to maintain my body temperature, I had barely slept and the CSF Leak headache was reaching epic proportions. I really wasn’t in the mood to be social and thankfully everyone was too busy to spend too much time with me. Normally there are only one or two of us in this bay but on the day of my infusion people were coming and going like it was the platform of a tube station.

Taken during the infusion, I was so cold I had to put my hood up and get covered in blankets.

Due to feeling so bloody awful my veins decided to play silly buggers and disappear from view the minute a needle came near them. On one of the four attempts everything was fine with the vein until the nurse flushed it with saline. It then decided to pop and I was left with a weird bubble of saline in the skin (which disappeared very quickly) and an impressive bruise which has healed very quickly. The poor nurse gave up after the third attempt and brought in his secret weapon which was a student doctor who was incredible at finding veins in people who were difficult to cannulate. He managed to get the vein on the first attempt, the only problem was it was on the outside crook of my elbow, which meant for the next two hours my arm had to be kept perfectly straight or the machine used to run the infusion beeped, informing me that there was a flow issue.

The day before the infusion I had been informed by the consultants secretary that the only way that she could book me in for the infusion was via an appointment with the acute care gp service. I would have to “convince” the doctor that I needed the infusion and to make matters worse they hadn’t been able to locate my notes. I spent over an hour that day photocopying all my letters and notes to ensure that I wouldn’t be denied the treatment after travelling for an hour to get there. I was more than ready for a fight however the infusion was started before I even spoke to the doctor who was supposed to be the one “agreeing” to the treatment. I have the nursing staff to thank for that, as I have seen them once a month since June they know me now as caffeine infusions are not a common occurrence. They just cracked on with it as they were so busy they needed the space in the bay.

I wasn’t impressed with the doctor at all when he decided to rock up to the ward. He spent about 30 seconds looking at my notes before coming over to speak to me. He checked my diagnosis and then without a word of lie asked me “So apart from the CSF Leak your normally fit and well?” I thought observation of the patient was important and something that was taught to doctors. I was wrong, this is a photograph of my foot in the pink trainer touching my wheelchair that is at the end of my bed.

I wanted to say “Well who do you think owns the wheelchair? Is that a give away that I am not normally fit and well?”. Of course I didn’t and I managed to suppress my rage long enough to list just a few of the conditions I suffer with. It really annoys me when a big deal is made about a doctor having to see you before the infusion has started and then they don’t take the time to read your notes. I know it was an incredibly busy day in A&E (this bay is attached to this department) but to not read the notes of someone who you are taking responsibility for legally and for their care is a bit, well it’s actually very crap practice. He was a muppet, who then when he finished talking to me left all my notes sat on the table that was being shared between mine and the next bed. The notes were left there until I drew attention to them when the infusion ended roughly 90 minutes after he had seen me. I hadn’t said anything as I presumed he would be back to scribble something in them evidently I was wrong.

At around 12:30pm the patient next to me, started kicking off about the fact our bay hadn’t had lunch. Two hot meals had been served but the rest of us who would be provided sandwiches had been forgotten. Her husband very kindly got me a cheese sandwich from the meal cart that was parked a little outside the bay. The health-care assistants had to track down the catering staff to get the other two people in the bay fed. A member of the catering team came in around 15 minutes later, brandishing a clear plastic refuse sack (I’m not lying we used the same clear refuse sacks in retail!) with the remaining sandwiches available for lunch. As one of the health care assistants was near my bed I whispered

“If she thinks that presentation is going to earn her a Michelin star, she’s very much mistaken”

The health care assistant doubled up laughing and had to wait for the catering staff to leave the bay before sharing what I had said. On all other occasions that I have been in there the sandwich selection has been brought around on a tray, never has it been hauled around in a refuse sack. It may not seem like a big deal but this was the patient's lunch, yes the bag was clean, the sandwiches were sealed but it wasn’t very appetising for those having to select their lunch from a rubbish sack. It's small things like this that if allowed to slide let bigger problems become acceptable.

As soon as my infusion was finished I was allowed to leave, this session was a little odd in the fact no observations were done at all, no temperature taken, no blood pressure readings and no ECG. I know I have suffered no adverse reactions in the past but with me I can use a medication for years and then suddenly develop an allergy towards it. The staff were exceptionally busy but if something had gone wrong they had nothing to fall back on to prove that I was ok before the infusion started. I like the staff, they are fun and make the infusion time fly by but basic nursing protocols shouldn’t be forgotten just because it's been ok all the other times. Getting to that level of complacency is when mistakes are made and really how long does it take for a set of observations to be done?

At least on this occasion my next infusion has already been booked for the 31st October so no more having to chase up doctors via the consultant's secretary. I now should be able to book in my infusions every four weeks which will make life a lot easier for me. Why this couldn’t have been done before I don’t know. I asked six different members of staff about booking them in before my PoTs & EDS consultant came into the bay, grabbed the diary and booked me in on the spot. It really was that simple yet everyone else claimed that it couldn’t be done or was it that they just couldn’t be bothered to get it done?

It is a shame really that the unit that I am treated in works so well and efficiently in some respects can let itself down on the basics.

P.S - slightly off topic but I have managed to get out on my trike (wheelchair plus trike attachment) twice in the last 7 days. It is thoroughly knackering, using a lot of upper body / core strength which I don’t possess but utterly liberating. It is amazing to see the paths I used to walk every day with the dogs pre 2008 have changed so much through erosion or the opening up of paths by the estate management. The dogs really enjoy me coming along too although their have been a couple of close shaves when they have got a little too close to the front wheel. Currently I am still going out in the early morning whilst I get to grips with using it and the dogs get used to seeing me out with them. I really look forward to my trips out and can’t thank those of you who donated to help me achieve this dream. Thank you xxx

Pain of exquisite quality

I have had some truly horrible days since developing a CSF Leak but last Saturday (1st October) has to go down as the worst so far. I knew on waking up at 3am that it was not going to be a good day when the head pain started the minute I was upright. By the time I went back to bed an hour later it had already developed the exquisite quality of pounding with every beat of my heart. I hoped that by returning to bed and sleeping for a few hours would tame the beast, it didn’t when I woke again at 8am it was still with me.

I had terrible nausea on waking at 3am but I had put that down to the Oramorph just landing on my stomach wrong. Every so often Oramorph will induce projectile vomiting, even though I have been taking it for a few years now. As I rushed to get my anti-sickness meds, my mouth was already filling with watery saliva, which normally means that all the anti-sickness meds in the world would fail to stop me throwing up. I did however manage to ride it out. The same thing happened again at 8am, I should have given up there and then and gone back to bed but I am stubborn and decided I would stay downstairs for as long as I could. By 8:10am I had my darkest sunglasses on so I could continue watching the TV, I get very light-sensitive, even on good days. The sunglasses usually knock the head pain down a notch on the pain scale. The impact on my head pain was negligible, I was still careering towards a 9/10 and possibly a 10/10 later.

I hate it when I get really sick on a day when hubby will not get home from work before 10pm. It means that he has seen how ill I am all morning before he goes to work and is left feeling like he is abandoning me in my hour of need. I try to reassure him that there is nothing he can do for me on days like this as all I will be doing is lying in bed. I know what it feels like as in the time before this was our normality, I have had to leave him, when I have felt he shouldn’t be left alone. The enormous guilt weighs heavily on you but your employers don’t give a shit because at the end of the day you are paid to be at work, they don’t cut you any slack. I have to say things have got better and Jay’s work are now very flexible when it comes to me. I am acutely aware of not pushing it with them, had Jay not been sick himself last week and taken time off, I would have asked him to stay home with me.

By 10:30am I had returned to bed, normally on a rough day I would hang on in there until hubby had gone to work and then collapse when he had left. I sometimes think I am like a wounded animal not prepared to show how sick and vulnerable I am until I really can’t cope any longer. I had spoken to my mum before going to bed and explained to her that it was getting close to calling an ambulance, the only thing that stopped me was that a) I could still talk and b) I really have an intense dislike of hospitals. It’s amusing really as this morning I have been trying to get hold of my consultants secretary to organise a caffeine infusion as I am getting desperate, which means I will have to spend the best part of the day in the dreaded institution. It’s been 6 weeks this Wednesday since I last had an infusion and I can really tell.

I spent the rest of the day in bed, lying as still as I could. Any head movement provoked intense pain and another wave of nausea. By 4pm it was so bad I was starting to wonder if I had meningitis. I know it sounds dramatic but the pain was just awful. I was so out of it by that point due to the unrelenting pain the thought of having meningitis didn’t even bother me I just went back to sleep or just passed out again. You know the pain is bad when you just no longer care what happens and all you are concerned with is being left alone so you can get on with the business of just surviving.

Even back in April when I collapsed and Jay had to come home from work it hadn’t been this bad. I was also getting really confused, I started calling our dog Frankie, Travis. The name of our first dog who had died ten years ago. I don’t really remember much at all from Saturday as I think I was drifting in and out of sleep (or perhaps passing out with the pain which is one of my specialities and how I know if the pain I am suffering is a 10/10 pain). It wasn’t until hubby got home from work at 10pm that I was able to get up without being in agony. I was also starving hungry having not been able to eat all day.

My head is still not brilliant more a 6/10 than a 9 or 10 / 10 now, the occipital neuralgia is also back much worse than before. I deeply resent having to organise the caffeine infusions myself rather than have them on a fixed schedule. It seems ridiculous that someone in so much pain should have to wait for a moment in which they are well enough to hound a consultant’s secretary. The consultant’s secretary is lovely and very helpful but she can’t organise the infusions. First a prescription for the caffeine has to be signed by a doctor (she has been waiting for a doctor to do this since Friday morning, all she needs is a signature), then the pharmacy has to check they have it in stock or order it in (caffeine infusions are not a regular thing so it’s not usually a drug that is held by the hospital). Then she has to check that the unit I have the infusions in have space available on the day (I have been quite ruthless and demanded that it is done Tuesday 4th Oct because I can’t go on like this) and that there is a doctor available to oversee the treatment. It would be so much easier for everyone if they just scheduled me in like they do for anyone else who is having infusions of various medications. Sorry I am in a bit of a rant mode today if you couldn’t tell.

There are days when I really don’t know how much longer I can take this for, then the following day arrives and it’s no longer as bad. Every day at the moment though is back to being a battle. I completely get why there have been suicides due to this pain. If I was in the pain I was like Saturday every day and they were dicking me around like they are now over the blood patch, I do believe it would come to the point where that was the only option. It is a terrible thing to say but I just couldn’t go on in pain like that, the pain I deal with on a normal basis is bad enough. When it’s really bad that is when I refer to it as “Pain of exquisite quality”. There really is no other way to describe it.

Last minute update:

At just after 3pm today (Monday 3rd Oct) I finally got the phone call to say the caffeine infusion had been organised. The only way the secretary could get it organised was if I see a gp who is part of the acute care team, so that he/she can understand why I need the infusion (I have now spent an hour photocopying my notes as mine are still at another hospital where I had to cancel the appointment last week due to hubby being sick). So I am making sure I am fully prepared to fight my case tomorrow in case this gp decides they know better than my consultant. I do wonder why that on  every visit to hospital, I have to be so organised in the day and age of electronic notes? I now have a small tree’s worth of medical notes to take with me. I also made an extra copy so I don’t need to do it next time. It’s a good job I have my head screwed on, I guess you can stop someone being a Training Manager but can’t take the Training Manager with OCD tendencies out of the girl.