This week has been fraught with activity, on the day last week’s blog post was published I had a telephone call offering me an appointment this Friday for nerve conduction studies and to see the neurologist who specialises in movement disorders. Stressful doesn’t seem to cover it. Even though I have been through all of this before, on numerous occasions it never gets any easier.


This isn’t my first rodeo where MG (myasthenia gravis) is concerned. I have had at least 4 nerve conduction studies previously, all came back negative. I will be honest, I really don’t hold out any hope for this one being any different. I have seen several neurologists who on first sight are utterly convinced that I have Myasthenia Gravis but when the tests all come back negative, shrug their shoulders and look no further. I have demonstrated my positive reaction to the ice pack test on more occasions than I have fingers. Yet with all the other tests coming back negative it is ignored despite the fact it conclusively shows I have an issue at the neuromuscular junction.


The fact that I respond to mestinon (pyridostigmine bromide) is also ignored once the tests come back negative. With one doctor suggesting it was merely the placebo effect. It is difficult to feel positive about hospital appointments when you know that you will be ignored if the tests don’t come back with a positive result. There is also the danger that you will be labeled with a having a psychological illness such as somatization disorder and all the medical care you currently have will disappear. The stakes are high, I know how much I stand to lose.


I have spent the last week slowly working through my pre-hospital appointment checklist. As I am seeing two different departments on Friday, I need to have two sets of prescription medication lists and the medication allergy list (as there are quite a few that will provoke a nasty reaction). These both needed updated as some of the medication I take is not on my repeat prescription list, some of it on the repeats list I haven’t taken for over a year and I have developed more allergies since last year. At the same time I have put together an Emergency envelope that will sit by the front door. This contains my latest hospital letters (copies of), lists of medication allergies, prescribed medication list and contact numbers for next of kin. I think if you have a chronic illness that may require an emergency hospital admission it is good to have an envelope or file with your relevant medical information in. In an emergency blind panic can set in and you can forget stuff. This way all that I have to do or hubby has to do is handover an envelope and the paramedics have everything pertinent to hand. Plus as my health care is overseen by two different hospitals in two different areas, the electronic notes don’t link up.


I tend to also carry a copy of  the list my prescription medications and medication allergies in my purse, along with a short list of my medical conditions when I leave the house. So that should anything happen car accident, faint etc I have all the information to hand. I know it sounds over prepared but I am horribly allergic to CT contrast dye, I really wouldn’t want to be injected with the stuff unless it was absolutely necessary.


I have lost count of the number of times I have read and re-read the appointment letters from the hospital, my memory is shocking, I wanted to ensure that I have all the correct information with me and that I know where I am supposed to be going. Also with the nerve conduction studies they have asked that I don’t use body lotion etc before the tests as it can interfere with them.


I would normally wear make up for a hospital appointment, so that they can’t toss me into the “depressed” file, I also try to avoid wearing black again to avoid being written off as depressed. Yes they really do use what colour clothes you are wearing and if you are wearing makeup to suggest that you are depressed (if you are a woman). I always ensure if I am wearing black (even if it’s just a top or a pair of trousers) I have bright colours somewhere on my outfit. So a great deal of thought has had to go into my hospital outfit, as the neurophysiology appointment asks that you wear a top that can be rolled up above the elbows and with trousers that they can be rolled up above the knee. I need to also add in something that is comfortable and preferably with layers, I have so many problems regulating my temperature, where I can go from cold to way too hot in a matter of seconds, so layers for me are essential.


Then comes personal grooming, something that can fall by the wayside when you feel like shit! I think the last time my legs saw a razor was the end of June, for my last hospital appointment. I am lucky I am not very hairy and it is slow-growing so I can get away with it for the most part. However despite being sick I am incredibly vain and would die of embarrassment should I need to roll up my trouser leg for the nerve conduction studies only to reveal really hairy legs!


I have also included two photographs in my hospital paperwork of my ptosis should sods law strike and I don’t get it that day. It is usually the case when you have a fluctuating condition that it is never at it’s worst when you see the hospital consultant. Over the years I have learnt the hard way, so now I take evidence with me. So if I am complaining of lower than normal blood pressure I take my omron BP monitor with me as it stores the readings. Now with ptosis I take good clear photographs that I have downloaded from my phone. That way it can’t be disputed that it happens. It does pay to be organised as if you are like me, you can get a little flustered when seeing a new doctor. Knowing that I have prepared in advance helps keep me slightly calmer.


I’m still debating on whether or not to take a freezer block with me, in case I should need to demonstrate the ice pack test for the neurologist. I have a nice small cool bag in which to keep it cold, it’s just a case of whether I should or not. In the neurologists letter they have advised me not to take pyridostigmine bromide before the nerve conduction studies but to take it when I have finished the tests. Again I am wondering if I should wait until I am actually in front of the neurologist to take it, so that they can see the extent of my ptosis and muscle weakness. At the moment I think I shall take the meds with me but not take them until after both appointments. What’s the point in assessing my muscle weakness if I have taken a medication that will improve my muscle strength?


You can probably tell I am a little wound up about this up and coming appointment. It is already affecting my sleep, as I am waking up at all hours and the immediate thing on my mind is this appointment. So much hangs in the balance. I am honestly not bothered if its MG or not, I just want to know why I am having ptosis / muscle weakness and what can be done about it. Over the last ten years all I have wanted are answers, which I don’t think is too much to ask?


2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.


Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.


Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.


A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.


On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.


I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.


Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.


I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!


On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

Red wrist band

Red wrist band


I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor’s surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse’s behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must’ve turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it’s basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

#5 a comedy of errors

On 31st October I made yet another trek to the hospital for caffeine infusion number 5. They do work and give me a little relief from the awful pain that is being caused by the cerebrospinal fluid leak. The results of each infusion is different, sometimes I get complete relief from pain for several days other times it is just a few hours. This time it was just hours, with the pain knocked down the pain scale for the following few days. Alas it is starting to increase again.

Although the infusion had been planned meaning I didn’t have to make numerous phone calls to get it booked in, the word disaster would cover it quite aptly. We arrived early, hubby, Sharon (my hospital buddy) and I at 9:30am, my appointment was 10am, so when the nurse ushered me straight through to get the cannula set up I was pleased as punch believing the infusion would be under way quickly and we would be able to get home soon. How silly of me.

We were greeted by the nurse that had an issue with my wheelchair (he claimed it took up too much space) last time, which made me uncomfortable as we had brought my new chair, which doesn’t fold down but is much more comfortable if I have to sit in it for a protracted amount of time. On getting me settled on my usual chair / bed thing he immediately told me that my wheelchair would have to go back into the waiting room, leaving me stuck if I needed a wee. I presumed that the offending wheelchair would be allowed back in with me once Sharon and Jay were allowed to join me on the unit. Yes this nurse also demanded my husband and friend stay in the waiting area until my cannula was in. Why I have no idea but as I was going to be in his care for several hours I thought it best not to antagonise him.

Before any cannula attempts were made, the nurse filled out a medical record form. Every time I am in this unit something different is done, this time I was asked for next of kin and what I was being treated for. The nurse had put low-grade headache, to which I nearly exploded but instead  contained my simmering rage and informed him that I had the same CSF Leak that I have had every four weeks since the end of June. I know they have lots of people to remember who go in and out of the unit but they all remember I am the caffeine lady and that I have shit veins to cannulate. So much so that some of the nursing staff actively avoid having me as a patient because my veins are such a nightmare.

Twenty minutes later with one attempt at a cannula made, Sharon came into the unit. The nurse made a face, as to let her know she wasn’t welcome and she stood up to him by telling him something along the lines of “I have come to spend time with Rachel, I am not staying in the waiting room. And can you get me a chair please.” I loved it, as I could see how pissed of he was. She told me Jay had told her to come on in and that there would be nothing they could do. Jay was going to stay with my wheelchair out in reception, as he doesn’t do needles.

Thankfully cannula attempt number three worked (after twenty minutes of having a surgical glove filled with hot water placed on my arm) but I was now waiting for the caffeine to come from the pharmacy. The reason offered was that the pharmacy wouldn’t have processed the prescription that had been completed (4 weeks ago) if it had been sent in on Friday (28th Oct), so they had given it to them today. That was a little concerning as caffeine is such a rarely used drug that I was now at the mercy of the pharmacy having it in stock.

Cannula attempt number 3

Cannula attempt number 3


I had seen my neurologist the week before and had asked him if it would be possible to have my occipital nerve block injections. I was unaware at the time that he was the duty neurologist , so he popped by and saw me. He also introduced me to the “headache” nurse who would be able to perform the injections today. I was so grateful I shook his hand as the occipital neuralgia pain had been getting much worse since my last lot of injections ten weeks prior. Again I shouldn’t have got excited as the experience was brutal. 

Thirty minutes later (now an hour after I have arrived) the caffeine infusion still hadn’t been started as the caffeine hadn’t been dispensed from the pharmacy, the “headache” nurse came back and asked if I wanted to have them done, to which I agreed. She then produced a consent form, I told her I had never had to sign a consent form before to which she replied “nothing surprises me”.  The consent form then had to be corrected as where it stated what my medical condition was it said “chronic migraine”. As she hadn’t seen my notes she had presumed what was wrong with me. That wasn’t the only mistake to be made on the form, after I had signed my name I had to print it underneath. I managed to print my maiden name, that hasn’t happened in years. I can only guess that having Sharon there reminded me of the days before I was married.

This nurse had a totally different approach to the occipital nerve block injections than the doctor who had been doing them previously. The doctor would inject the local anesthetic in 4 different locations, this nurse just did two injections at the base of my skull and rammed them in. It hurt like hell and it was all over in seconds. Sharon was in a state of stunned silence, when the nurse left she said “that was f**king brutal Rach” and she wasn’t wrong. Needless to say I wasn’t impressed, I have been left with pain from the injection site and I still have occipital neuralgia. I have been using my Tens machine placed on my neck and the base of my skull to combat the pain. This is the first time these injections have failed to work, I am guessing it is something to do with the way they were performed.

Jay had now been sat in the waiting room for 90 minutes and was not best pleased that the caffeine infusion hadn’t yet been started. Nor was he happy that a wheelchair that would cost over £2,500 to buy new was having to be left unattended in the waiting room whenever he wanted to come and see me. I could sense he was getting tense so told him to go and pop into his parents, as he doesn’t get to see them very often. I also told him to take the wheelchair with him as I didn’t want my chair to be left in the waiting room with no one keeping an eye on it. He took me up on the offer deciding it was the best thing to do because at this point we had no clue how long it was going to take to get the medication from the pharmacy.

At midday, 2.5 hours after arriving the caffeine infusion still hadn’t been started. Sharon went and got us some lunch as we were both starving. She brought back a delicious pile of goodies so we got stuck in. I was so happy to avoid the hospital sandwiches which are totally vile but I usually end up eating because I couldn’t face breakfast. I have to say that was probably the highlight of the day, the cookies she bought for dessert were divine. Good old Marks & Spencer’s, even the crisps were out of this world.

As I was stuffing my face another nurse came over to start the infusion. She flushed the cannula that had been in situ for around 90 minutes but the vein had collapsed and it felt like someone was pouring battery acid down it. I would now need another cannula inserted. Knowing that he had been defeated by my shitty veins and no one offering to have a try, the original nurse went off to get someone else to have a go None of the nurses in the unit wanted to try, as all of them have at some point and know how difficult it is. I was starting to get concerned that they would abandon the infusion if they couldn’t get a line in, leaving me with ever-increasing head pain and no end in sight.

The ward manager was brought in to attempt to get a cannula in, he was cocky which bothered me as those types don’t listen when you tell them not to dig around if they fail to get a vein. He did however ask me where was good for a vein on my right arm, my left arm was now covered in horrendous bruises that had huge lumps under the skin.

The first attempt failed after looking promising initially by providing a flash of blood, which then stopped. My veins like to tease people by doing this on a regular basis. When it stopped working, I wasn’t surprised and nor were the rest of the staff in the unit. All of them at some point have been conned by my veins. Only two people so far have got a vein on their first attempt and both of those were junior doctors but they were only brought in after several other attempts had failed. He then went for the back of my hand which up until now had been a good place to try as on more than one occasion it has been successful. That one failed, so the tourniquet was applied tightly to my upper arm and I was asked to make a fist.

It seemed that I was doing this for ages when all of a sudden the nurse jumped back, as he did that I lifted my hand up from the table only to realise the back of my hand was soaking wet. When the attempt on the back of my hand had been aborted, there had been no blood at all so the nurse hadn’t bothered to put anything on it. Now blood was oozing out all over the table and dripping onto the floor. The nurse had jumped because he thought he had cut himself when he saw the blood and hadn’t realised it was coming from me. It took a while to stop the bleeding with firm pressure applied. Finally on his third attempt he got a cannula in and the caffeine infusion was started without delay.

About an hour after the infusion had been started Jay came back onto the unit with my wheelchair.  The nurse who seems to have an issue with mobility aids was on his lunch, so I told Jay to sit in it whilst we waited for the infusion to finish. None of the other medical staff on the unit have a problem with my wheelchair, there is more than enough room for it, it’s just this nurse seems to make it his mission to make me feel uncomfortable about its presence. Due to the fact I don’t want to have to make a formal complaint about him I have held my tongue however should he start on my next scheduled visit I will speak up. It’s bad enough having to come to terms with the fact I need to use a wheelchair, without some idiot making me feel uncomfortable about its presence in a hospital unit.

Five hours after we arrived at the hospital we left, with the next infusion date booked. This time I have booked it for a Thursday, as the nurse who I have seen since June has told me he will be able to put the prescription in on the Wednesday, so that we should be in and out in three hours if my veins play ball.

Bruise 24 hours after left arm

Bruise 24 hours after left arm


Right arm 24 hours later

Left arm 48 hours later

Left arm 48 hours later


Left arm 8 days after hospital

Left arm 8 days after hospital

My birthday on Tuesday (1st Nov) was a sedate affair as I was completely worn out after the hospital debacle. Jays birthday the following day was mainly spent in bed. We both had really lovely presents given to us and lots of messages on social media. On Sunday 6th November it was Mollie’s 12th birthday. So here is a photo of the old girl, who was thoroughly spoilt.


The most un-birthday-ish ever

Next Tuesday (1st November) or last Tuesday by the time you read this, is my birthday and this year I am feeling the most un-birthday-ish, I have in years. I just can’t get excited about it, nor my husband’s the following day. I have bought and wrapped all his presents, I am looking forward to giving him his presents but if we could just gloss over mine I would be more than happy.

Saying that though I have been incredibly irritated when hubby has tried to open my cards (that have arrived by post) at the same time as his. I have also banned the cards that have arrived being put up on display before the day. Hubby has a dreadful habit of opening everything on the lead up to our birthdays and this year this has got on my very last nerve. I have so little this year to look forward to, that I have decided none of my cards will be opened until the day. I have no problem with him opening the post the rest of the year but my birthday cards are just that mine.

There are a lot of things happening on the lead up to the big day, at the weekend hubby is going out with his friends, so I have a really good friend coming to spend Sunday into Monday with me. Up until now I have been pretty excited by it, we have been planning it for months but now I am filled with anxiety that she won’t enjoy herself or that I will be ill (well sicker than normal) and she will end up changing her role from great friend to carer. Something I hate because it will mean yet again chronic illness has taken over a day that should be fun.

On the 31st October I am heading to Plymouth for my caffeine infusion and meeting up with my oldest friend Sharon, who I have known since we were 8 years old. I can’t thank her enough for spending her free time with me in hospital (a place we both loathe) so that we can catch up. I am looking forward to seeing her as I haven’t seen her for about ten weeks. We have gone years and years before without seeing each other but now because I have seen her on a more regular basis, the hospital visits just aren’t the same when she isn’t there. I also have to thank her for being my photographer when I had my occipital nerve block injections back in September. She admitted to me afterwards that she had almost passed out when she saw how far the needle went in!

Maybe I have my husband to thank for me not feeling particularly birthday -ish after all the muppet did book me in for my first dentist appointment in 3 years on my birthday…..Even the receptionist questioned his wisdom at the time of him doing this. I have been quietly seething ever since as I have a rabid fear of dentists and I know my teeth are quite a mess thanks to EDS.

Most people (other than Dentists) have no clue about the damage EDS can do to the teeth. I am rapidly losing the enamel from my two front teeth, so the base of them is very thin and over the last three years bits of them have chipped off. Also the braces I wore as a teenager have left pits in my teeth, I was lucky enough to wear the old train track style braces top and bottom. Where the brace was cemented to my teeth it has left holes that rapidly became gaping pits in 2013. My dentist at the time filled the holes and they looked great for a while but now, due to copious amounts of coffee (due to my CSF leak, caffeine increases cerebrospinal fluid production) and fags (I seem to smoke more when I am in a lot of pain, when I can get out of bed to smoke at the back door) these “fillings” have become stained and I hate looking at my teeth.

I know I am going to be in for a painful session and will probably have to return quite quickly for more work. I think I need a couple of fillings too which will be an adventure as due to dysautonomia I need adrenaline free injections or I will pass out on standing. I also need a Dentist who works quickly as due to EDS affecting the local anesthetic. I tend to burn through the stuff very quickly and due to my extremely low pain threshold when it comes to my mouth (everywhere else it’s high). So as you can probably imagine I am less than thrilled with the prospect of attending one of my least favourite places on my birthday!

In my husbands defence I did say to him accept the first appointment they have…………maybe I should have given it a bit more thought.

The 1st of November would have been used by me as a crash day. Not that I book them in but I know from experience the day after the trip to Plymouth for a caffeine infusion I am fit for nothing and can barely move. The trip to Tavistock for my neurology appointment landed me in bed from the minute we returned until the Friday (28th October). I was just so tired that I couldn’t function, I kept dropping things, my eyesight was blurred and I had double vision. The pain in my legs and spine from sitting for so long meant all I could do was lie down as my normal painkillers weren’t touching it. I am expecting all of this on Tuesday along with a trip to the dentist. Wednesday 2nd November hubby’s birthday is going to be a total washout. It’s just as well hubby is on holiday that week, as my capabilities are going to be severely restricted.

I don’t know if my lack of birthday excitement is also being caused by the fact for the first time in years we won’t be holding a party. Since our 40th birthday we have held two parties a year. This year however we have had to cancel them all, as I am just no longer well enough to have 15 plus people in the house and all the stress that goes along with putting on a do. I hate what this CSF Leak has done to me. It has robbed me of everything this year and what hurts more are those who fail to understand how bloody restrictive it is.

My life is ruled by my head pain, yes on a good day if I am lucky I can have a few hours sat up. So when friends come over I deliberately lie down for hours before they arrive so that I can be sat up for their visits. However even those have become few and far between. I know that people have their own lives to lead and I don’t begrudge them of that, it’s just this year has become particularly isolating. I have to thank Imogen and Sharon for always being there for me. Imogen for coming every two weeks to see me and looking after our mutts on a moment’s notice and Sharon for accompanying me on my frequent trips to hospital. Without you both I really would have been lost this year. If anything this year has taught me a lot about friendship. There have been others too who have kept in regular contact via text and for that I am grateful.

This birthday is the 9th birthday I have faced being chronically sick. In a normal world I would have gone out for dinner and had a few drinks with my closest friends. Yet again the day will probably be spent lying on the sofa / bed wishing I was anywhere but here. Birthdays were always so exciting when growing up, now they mark another year of failing. Failing to celebrate like the rest of the human race and doing it the chronic illness way. Grabbing what pleasure you can while you can. In an ideal world I would love to go pony trekking for the day or go on a day trip or see a film or play. Those days are long gone and a birthday is now a bitter reminder of stuff I can no longer do.

I should be grateful many people aren’t lucky enough to see their 43rd birthday and I am grateful for the things I have. I just wish that it would be vastly different.

Too much of this year has been spent lying in a darkened room due to head pain, which in turn has left me with far much time to think. I am even anxious about Christmas and whether I will be well enough to supervise the cooking of our Christmas dinner. I have never worried like I am worrying at the moment as I have no control over when a bad day will happen and there are no takeaways open on Christmas day should I find myself incapacitated.

I wish I could get myself into the swing of things and look forward to this birthday but I just can’t. I haven’t felt this un-birthday-ish ever. Hopefully next week I will be able to tell you that I had a fab day….even if some of it was spent in the dentist’s chair!

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.

I was so cold during the infusion I had to put my hood up and get covered in blankets. The sunglasses are because when my head is bad I get very light sensitive.

I was so cold during the infusion I had to put my hood up and get covered in blankets. The sunglasses are because when my head is bad I get very light-sensitive.

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.


Cannula – really bizarre angle



My “juice” that takes 2 hours to run through

 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.



had to be careful taking the photo that I didn’t breach the other patients right to privacy


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.