Brave

I don’t class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don’t have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn’t travel the hours journey to the hospital by myself. Having pointed out the fact I don’t do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn’t have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don’t know. I’d have had a fucking heart attack, there isn’t enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don’t run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn’t travel alone? It was still fucking huge for me to navigate the hospital alone – one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor’s appointments at the gp surgery by myself and the same for dental appointments but it doesn’t mean I am happy or confident doing it. I hate it. It has got to the point where I just don’t like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before – someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who’s walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality…..once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can’t blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn’t have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn’t be in anyone’s way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it’s a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn’t doing its job, I have had two migraines in the last two weeks. Plus I really shouldn’t be on amitriptyline with PoTs

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe “There’s mummy look”. Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can’t tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today’s travel and navigating the hospital corridors have left me exhausted. I don’t feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.

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Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome

 

Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

Stressed

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?

Eventful

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

rightarmfollowingday

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.

mollie-12

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

Cannula – really bizarre angle

 

caffeine-infusion

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.

 

wheelchair

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