My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.
A few weeks ago I requested all my consultant letters from 2015 onwards. I like to have copies of things as it keeps me straight, doctors are human beings and things get missed. However I wasn’t quite prepared for the amount of untruths, information about my health that had never been passed onto me and test results that had needed urgent action that had never been acted upon. I spent around 30 minutes just having a quick read through, as you can imagine there were probably 100 of pages of information – most of it irrelevant just showing what prescriptions I had ordered and when. But if I found all this in 30 minutes what else is lurking in my notes that hasn’t been acted upon, is a major untruth or I have never been told?
I want to state for the record I have no problem at all with my gp surgery, the things i have spoken about should have been relayed to me by my various hospital consultants. I can understand why my gp didn’t bother telling me about the arsehole I saw in 2015 whose letter is so full of mistruths that I wonder if it was actually my appointment he was reporting on, my gp at the time was probably concerned for my mental health. Although we did have an appointment quite soon after seeing this doctor and I made my feelings about him quite clear. Usually my old gp would rush to the defence of other medical professionals if I was voicing a negative opinion, his silence on the matter should have alerted me to the fact he wasn’t that impressed by this so – called – expert.
So what did I learn from this quick perusal of my consultant letters? Well I have never been naive enough to believe that I or any patient ever receives the same version of a letter your consultant cc’s you in on – actually tell I lie I know one of my consultant always sends me the same version as he never changes who it is addressed to – never me but my gp. I have seen this in the past with the version I received from one doctor telling me that he was going to do a trial of plasmapheresis to rule out Myasthenia Gravis, only for me to read the letter he sent the consultant where he categorically states I do not have MG and he thinks that all treatment for MG should be stopped. It made me look like a liar when I tried to discuss this letter with my local hospital consultant. At the time I was devastated by the duplicity. Why be one thing to a patient’s face and yet treat them so appallingly behind their back? It reeks of arrogance, that they feel they are a breed apart from their patients.
Firstly I learnt I have a fibroid on the anterior wall of my uterus. When I attended the hospital for my trans-vaginal ultra sound in 2015, I was told during the appointment I had an ovarian cyst of around 2cm in size on my right ovary. I was also told that this wouldn’t be monitored as it was under 4cm. At no point was I told I had a fibroid, this was complete news to me. I was shocked that at no point had anyone suggested that I the patient be given a copy of the report after the ultrasound. Ok it’s not a huge fibroid but surely I had the right to know? Especially when there is no mention of an ovarian cyst.
In the same year I had a lot of bloods drawn one of the blood tests performed was a cortisol level. It was taken at 1015am in the morning when cortisol levels would be beginning to slowly drop away naturally. However my cortisol level was 107, as you can see from this abstract – https://www.ncbi.nlm.nih.gov/pubmed/12636203 a level of less that 110nmol/L shows that the patient has adrenal insufficiency. This has the potential to be life threatening as it could indicate I have Addison’s disease. Yet nothing at all has been done about this result. The hospital consultant that wrote to my gp said that he would be admitting me into hospital for further testing. It never happened. What annoyed me more was this was the doctor who accused me of spending too much time on the internet looking up syndromes to have…..yet my blood tests he reluctantly performed showed massively raised prolactin levels and this cortisol level of 107. I’ve had low cortisol before and had further tests in 2010 however my results then were not as low as they were in 2015. So now I will copy the letter and go and see my gp to point out I had low cortisol levels three years ago and possibly it would be a good idea to get it tested again?
The winner of best work of fiction – letter from a consultant goes to an arsehole I had to travel nearly 200 miles to see. When I met this tit I knew he was going to be of zero use, especially when as an EDS expert he told me that Ehlers Danlos Syndrome didn’t cause CSF Leaks. When you sat across from someone who is supposed to be an expert in their field and you know more than they do on a subject, that’s the time to start worrying. Hubby and I should have left at this point – research shows that 90% ( it could be 80%) of people with a spontaneous spinal fluid leak have a connective tissue disorder, of which EDS is one. So for this expert to sit across the room and tell me that EDS doesn’t cause spontaneous leaks, either meant he was ignorant of the connection between the two – not a good look for an expert or he was just a massive bellend. The choice is yours.
My CSF leak was diagnosed by a neurologist who has published papers on CSF leaks, you know an actual expert on the condition. However this doctor states in his letter to my gp that I don’t have a CSF leak and my headache is being caused by PoTs. This is the doctor that doesn’t believe that EDS causes spontaneous leaks and now is telling my gp he knows more than an expert in the field of spinal fluid leaks. The sheer arrogance of the doctor took my breath away, I was absolutely fizzing with rage and used lots of language that I wouldn’t wrote in this blog.
However there was even better to come, he wrote that I told him I used a wheelchair due to my headache…….yep read that again……I told him I used my wheelchair because of my headache…… I just laughed at that one. My doctors know I use a wheelchair for two main reasons 1) I get drop attacks where I will semi lose consciousness as I walk along, with no warning. This was the main reason why I had to stop walking my dogs unaccompanied as I had no clue as to where or when I would pass out. I could be mid-sentence and I would hit the deck. 2) I also use my wheelchair because of the various issues I have with my spine and other joints. Walking causes me intense pain, bursitis will flare up in both my hips, I get plantar fasciitis in both feet. Walking any kind of distance is just too painful. I can categorically state that I NEVER SAID I used a wheelchair because of my CSF leak. Because when I started using a wheelchair in 2008 I didn’t have a csf leak. I started using my chair to prevent head injuries from my drop attacks and to allow me to get out and go further than just walking would allow.
Now if that had been all the lies / mistruths he had told then I could possibly live with that but his letter was just one lie after another. He claimed I was resistant to coming off opioids despite the fact they don’t work on my pain. His main concern during the whole appointment was to get me off opiates but could offer me nothing in return to kill the pain. I have never said opiates don’t work, I wouldn’t bother taking them if they didn’t work. Opiates were the only medication that reduced my pain enough for me to be able to get out of bed after being bed bound through pain for 12 weeks. Thankfully the gp who this letter went to was the doctor who prescribed me morphine and when I discussed this attitude of the consultant that I had to come off morphine, my gp said no way, there is nothing to give you as an alternate. He said I saw what you were like before morphine, I couldn’t do that to you.
Oh and there is more that this cockwomble of a doctor wrote, he said I was resistant like most EDS patients to getting better………………….I’ll let that sink in. Someone at this National Unit thinks that EDS patients don’t want to get better. Now it really doesn’t surprise me as this hospital also uses the Lightning Treatment on pediatric patients with M.E. If they are arrogant enough to believe that they can cure M.E using this bogus treatment no wonder they believe ( or should I say this one doctor believes) that EDS patients can think themselves better.
All the doctors that have ever treated me have said what a positive mental attitude I have towards my medical conditions. That I persevere no matter how hard things get. That I can still laugh and make fun of myself when things are truly awful. So to declare in this letter that I was resistant to getting better from a genetic medical condition that has no cure is simply laughable. No wonder the hospital consultant that referred me to this hospital said he wouldn’t waste the hospital trusts money again sending any future patients there. He couldn’t apologise enough and at that stage he knew I hadn’t seen the gp’s version of the letter, he probably thought I never would.
I would suggest to all patients that they ask for all copies of their consultants letters going back three years. Some surgeries will charge you a fee for this, i was very lucky and didn’t get charged even though I was expecting it. You will have to fill out a load of information as to why you want the information and you’ll need to provide a form of ID. They can refuse to give you these letters using the get out clause of it being detrimental to your mental health. Using the same get out of jail free card they can omit some letters from what they give you. If you have complex health issues it is essential that you have these letters and read them. If you find that tests haven’t been chased up or performed you can advocate for yourself. When you have lots of conditions / consultants it is very easy for things to get lost or lose their priority. At least this way you can be an extra set of eyes and see if things have been missed and bring them up with your consultants or your gp.
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.
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.
I’m fine seems to be the mantra I have adopted since becoming chronically sick with Ehlers Danlos Syndrome (EDS HT), Postural Orthostatic Tachycardia Syndrome (PoTs) and a Cerebrospinal Fluid Leak (CSF leak) which has occurred this year, to name just a few. It has become such an ingrained phrase in my vocabulary that I have uttered the words without thinking to a doctor after being blue lighted to hospital. I think it is some kind of self preservation mechanism as when you are chronically sick you soon realise that people really aren’t that interested in your latest symptoms. When asked you reply without thinking because you will do anything to move the conversation forward. In a complete contradiction to what many people seem to believe about those who are chronically sick, we don’t like the attention that our conditions bring, so by saying I’m fine we can stop the conversation in its tracks.
Being sick can turn you into a bit of a fib teller, who really wants to know that you have pissed yourself because your bladder decided to empty itself when you answered the front door? Maybe they’d like to know how my bowel stopped working for 48 hours and when I eventually went I blocked the toilet? R.I.P toilet brush, you put up a valiant fight, your efforts were not in vain. Being ill is not Hollywood glamorous, our bodies can quite frankly be disgusting in the symptoms they throw up (pun intended) so why would I want anyone but the closest people around me to know how I really am?
Many people I know with chronic conditions really downplay their symptoms even to other chronically sick friends. We are constantly aware that over sharing can cause not only disgust but the accusation of attention seeking. I am also aware that there are so many other people who are much sicker than I am, so I feel that I can’t speak up because it would make me look weak in front of my peers. So you end up in the ridiculous situation where no one is telling the truth about how bad things are until you hit rock bottom. And even then when destination rock bottom is reached, you fear the condemnation of others who don’t believe you or who simply disappear on you when you need them most.
In the last couple of years I have had to endure the experience of disappearing friends when things have got tough. Being investigated for a possible tumour in your pituitary gland? Eat my dust. Got a confirmed CSF leak? I’m too busy to see you. Why would you put your head above the parapet and actually tell people that you aren’t fine when you are treated like that? So many of us have learnt the mantra of “I’m fine” that when things are truly awful, we can’t face telling people things are far from fine.
It has turned me into a bit of a liar where my health is concerned, there are very few people who know how I am on any given day and even then they will only get the edited highlights. However that can backfire as we are so focused on being fine that when we need to ask for help we can’t. I have a feeling of shame when I have to admit to myself or others that I can’t manage. A few months ago I asked my gp for a referral for an updated care plan in case of emergencies, if something happened to hubby as I couldn’t manage alone. His response was to give me a website to contact, when he had already been told that I couldn’t sit up and he was the one who diagnosed me with low pressure headaches aka a CSF Leak. My years of telling him that I’m fine spectacularly came back to haunt me.
This piece was inspired by a conversation with my good friend Sharon, who herself faces many health battles. I consider her condition to be worse than mine and she considers mine worse than hers. We are reasonably honest with each other but I also have a tendency to minimise my symptoms and I am sure she probably does the same with me. She is the person I am most honest with but I sometimes feel guilty for moaning to her when she has things so rough herself. She also freely admits how hard she finds it to ask for help, she like me is determined to be as independent as possible and not a burden to those around her. We laugh at how we both frequently say “I’m fine”.
Hubby usually gets an edited version of how I am if he is working as I don’t want him to have the stress of worrying about me whilst he is trying to earn a living. I have been known to put on a brave face until the minute he leaves the house and then crawl to bed, just because I know it will make him really anxious if I tell him the truth. When he is home from work I will also fight my symptoms for as long as possible down playing them so I don’t have to go to bed. A lot of times this year it’s not been possible as the head pain caused by the CSF leak only lessens when I lie completely flat.
I learnt quite early on in my chronic ill-health journey that when people ask how you are, they really want you to reply “I’m fine and you?”. They don’t want to know what is really going on. Society seems to have a real issue with those who are ill, just look at the obituaries and you will see phrases like “bravely borne”, “brave battle” and “courageous struggle”. Even when dying those who are sick are supposed to paint a smile on their face and not “give in” to their illness. To admit that things aren’t fine and dandy is to show weakness, allowing your condition to have the upper hand. In the chronically sick community people describe themselves as warriors or zebra strong, I don’t have a problem with how people want to label themselves but I don’t feel very warrior like or zebra strong when my head has been down the toilet for a few hours due to my CSF Leak.
People who do not deal with illness on a daily basis can end up feeling lost or hopeless when confronted by those who have a chronic condition. I know looking back that before I got sick I had no understanding at all about the issues faced by those who were dealing with symptoms outside that of normal illness such as a cold or flu. We seem to struggle to fully understand unless we have walked a mile in someone’s shoes. Now I am part of the community I am embarrassed by my previous ineptitude. It doesn’t stop my anger towards though who profess to care but negate what I am going through. I also don’t want your response when faced by my reality to be to give me unsolicited medical advice.
It is a difficult tightrope act that each community performs, for the sick it is do we trust this person enough to go beyond the usual I’m fine and for the other it’s having the honesty to admit that sometimes you don’t want to know all the gory details, without making the other person feel guilty. It doesn’t help that during a consultation with a long gone doctor I was told I had provided him with too much information or that on another occasion I was told I spent too much time on the internet looking up syndromes to have. If those that are treating us can’t provide empathy and understanding, is it any wonder that we resort to lying, even to those who are supposed to be treating us? If they aren’t listening then what’s the point in saying anything other than I’m fine?
The other side of the coin is that there are so many things wrong, if someone were to ask me how I really am, how much do I tell them before their eyes glaze over? Let’s take today as an example, I have a rapidly amplifying headache from my CSF Leak which means if I don’t get more caffeine in me or have a lie down it will go from annoying to excruciating. I have TMJ (Temporomandibular joint pain) caused from my trip to the dentist on 16th November where I had to have my jaw open for 30 mins and was moved around (not roughly) by the dentist. This means that all my teeth hurt, my jaw hurts and closing my mouth hurts. So I am on a diet of soup and soft food to help it settle down quickly. I am unable to maintain my body temperature so I have an excessive amount of layers on in an attempt to keep warm. My fingers are swollen and stiff, so typing has been a joy. Various joints around my body are emitting low-level pain signals. By low-level I mean less than a 6 out of 10 on the pain scale. Are you bored yet?
When I say I am fine what I mean is I am my normal level of shitty health. If I admit to you that I am in pain, it’s probably creeping towards a 7 or 8 out 10. If I tell you that I am really bad / awful then I am probably deliberating about whether or not to get outside medical assistance or if I need to get hubby home from work. What I am fine doesn’t mean is I am ok, I am symptom free, it’s as if I have never been sick because those days just don’t happen.
I’m fine means I can cope with what is being thrown at me without resorting to extra pain meds or going to bed. However what may have been I’m fine an hour ago could be it’s not good an hour later. My body has a tendency to misbehave, move in the wrong way I could end up in severe pain from a trapped nerve in my back or muscle spasms that have me walking like a great ape. PoTs symptoms can strike at any moment with chest pain and palpitations. My blood pressure could plummet causing me to faint or feel the urge to sleep. I just don’t know what is going to happen when and everyday is spent like this.
Obviously for those of you who read my blog on a regular basis, you know that I am anything but fine. You know I should be winning awards for my ability not to look sick or portray how sick I really am whilst out in public. So I continue to play the “I’m fine” game and the only person I am hurting is myself.
By the time this blog post is published hubby and I will be up and getting ready for our trip to The National Ehlers Danlos Unit in Bath, a good two-hour journey to a hospital that has no parking. I am particularly looking forward to hubby losing his cool whilst trying to find a place to park.
Last week I was unable to write a new blog post so took the easy way out and re-blogged a piece from last year. I hate doing that but if I hadn’t there would have been nothing at all. Last week was filled with massive bouts of insomnia / painsomnia (if you’re not familiar with that term it means being unable to sleep due to high levels of pain) add in getting my hair cut on the Monday and a trip to the dentists on the Wednesday, I was good for nothing.
I can’t lie I have a terrible phobia of the dentist, which is bad when EDS has really done a number on my teeth. Apart from my front teeth every tooth in my head has a filling, my front teeth are losing their enamel and are also crumbling. I should be a regularly attending patient but three years ago I stopped going due to my health being bad and never arranging an appointment to go back. The dentist that I had built up a good relationship with, that knew about EDS and would listen when I told her to stop has left to work in the private sector. If we could afford to see her, I would but we don’t have that kind of money, so I am now having to “break in” a new dentist.
The last appointment I attended had been on my birthday, it didn’t go well as I was so tense I could barely open my mouth and he seemed not to believe me when I told him he was hurting me. Not a great start when all he was doing at the time was examining the condition of my teeth. I learned from this appointment I needed two fillings as I had developed large cavities in my rear molars. One on the right side and one on the left, the cavities were so large and deep they could be seen on the x-rays he took. You would be correct in thinking that I was not looking forward to getting them sorted out.
Before I left the appointment on 1st November I went through with him that I needed a local anesthetic without adrenaline, one with adrenaline will cause me to face plant when leaving the dentist’s chair, as one previous dentist found out many years ago before I had my diagnosis of EDS and PoTs. Due to getting my diagnosis at 37, it means I have endured more than my fair share of painful dental procedures, with dentists shouting at me that I “couldn’t possibly feel anything” because I had been given local anesthetic. It’s not only dental procedures that have been plagued by pain but also small procedures such as having part of my toenail removed and a lumbar puncture. Until the diagnosis I got shouted at a lot by the medical profession, simply because they didn’t believe that the local anesthetic they had injected wasn’t working. Now although they acknowledge that anesthetics don’t work properly they underestimate how long it will last for.
I knew in my heart I was going to be in trouble yesterday when the dentist administered the injections for both fillings at the same time. I wanted to pretend it was going to be ok and that it was a situation where it was mind over matter. The first filling went ok, although I really could have done without the running commentary of what he was doing. I spent the whole of the first filling trying not to vomit which is my normal feeling when I hear the dentist’s drill. I really didn’t like it when he told me that the next bit of equipment was going to vibrate a lot making my tooth feel like it was going over cobbles. Another wave of nausea hit me when he told me that he was removing the “soft stuff, to get down to a good hard base”. I wanted to tell him, I really didn’t want to know but as I had his hands in my mouth and the dental nurse sticking the suction device to my tongue constantly, he wouldn’t have worked out what I was saying anyway.
Filling number one went off near perfectly, this was a good dentist experience, other than the running commentary. I was a perfect patient apart from the hyperventilating at the start and gripping the armrests until my knuckles went white. I didn’t find my happy place, which I try to do when stressed to the max during medical procedures. I am pretty good at meditation and can drop off during MRI scans because I just go into my head, the dentist is a different story coloured by so many bad experiences.
I was pleased, the dentist was pleased but it was short-lived due to filling number two. I should have said something or made some sort of guttural noise (as you do when the dentist has your hand in your gob) when he blasted the tooth with cold air and then stuck the metal prong into it. I tried to convince myself that I was imagining the sharp stab of pain. Concentrating on my breathing, I braced myself for the drill, trying very hard not to panic.
Within seconds of the drill hitting my tooth, I entered what can only be described as a state of blind panic. Until yesterday I had presumed that the state of blind panic was down to a weak mind, an inability to control one’s fears when faced with them. I have a fear of heights yet know that if my life depended on it I would overcome my fear, I really don’t like daddy-long-legs or spiders yet will deal with them if I am alone in the house. I am scared of them but I would never describe it as a phobia. People tend to throw the word phobia around quite a lot but I can say hand on heart that my “fear” of dentists has now developed into a phobia. Yesterday I experienced a state of blind panic, where I couldn’t think clearly nor see the danger I could have potentially put myself in. I know now that it is nothing to do with self-control or a weakness of mind and I unreservedly apologise to those people I have doubted in the past.
As soon as the drill hit my tooth, I had immense pain (I know my pain threshold for dental procedures is considerably lower than my normal pain threshold) without thinking I grabbed the dentist’s drill and threw it out of my mouth. I immediately sat up and had the dentist not put his arm across my chest I believe I probably would have attempted to leave the room via the window opposite me. It all happened so quickly that there was no thinking involved, I just wanted the pain to stop and to leave the chair. The dentist was really freaked out but didn’t lose his cool with me. He did say “never do that again, it’s so dangerous, you could have really hurt yourself” in a very quiet voice. I apologised and then burst into tears, not my usual tears which are quiet and restrained but full on chest heaving sobs where I could barely speak. The dental nurse gently rubbed my arm and dried my eyes. I cried so much that the shoulders of the top I was wearing were wet. When I later looked at myself in the car on the way home, I resembled something like Alice Cooper with mascara all down my face.
I think at this point the dentist didn’t think I would allow him to continue but rational Rach walked back into the room. As long as I had adequate pain relief I would be able to continue. I had told him on 1st November that local anesthetic wears off quickly with me and he would only have a small window of opportunity to get the job done. I guess sometimes they don’t believe their patients and need to see it to believe it. I wish they would take what we say as the truth because if he had, I wouldn’t have had to go through that.
I often joke that it’s been a good appointment if the dentist still has all his fingers, I guess now the joke will be it’s been a good appointment if I haven’t grabbed the dentist’s drill or tried to escape the chair mid appointment.
The dentist was a little surprised when I could feel the third injection go in, that part of my gum should have been numb but it wasn’t and proved the point that the original injection for the second filling had worn off. He waited a few minutes before beginning work again. I told him before he started that I would sit on my right hand so that should the urge to grab the drill come over me I physically couldn’t. We agreed that should I feel anything I was to raise my left hand and he would stop. This was the system I had in place with my last dentist and it had worked well, although I have never had to sit on my hand before. But then I have never ripped a dentist’s drill from my mouth either.
After all that drama the second filling went off smoothly. I left the dentist’s without face planting but by the time I got home I needed to just crawl into bed. Today I feel the same but my back is so sore from having so many days in bed lately that I am hanging on for as long as possible before returning.
I don’t have to attend the dentist until March 2017 and that is to see the hygienist, my teeth still need cleaned. I am apprehensive about it as it seems all the nerves of my mouth are on the outer edges of my teeth. At least the anxiety of the dentist’s appointment and the recovery time needed after this little jaunt out have stopped me thinking about my trip to Bath. every cloud eh?
I had one of those moments this week when searching through the archives of my blog I realised that I had never done a straight forward, honest to goodness post about PoTS. I may have mentioned it in passing but there is no one post based solely on it. I know that many people use my blog to try to explain their medical conditions to friends and family, so I am sorry its not happened until now.
My own diagnosis has moved away from “just” PoTs (although that is still part of it) and is now called Severe Autonomic Nervous System Dysfunction, which as far as I can tell is just a long winded way to say Dysautonomia. Which isn’t a medical term that seems to have caught on in the UK. All it means is instead of just the basic PoTs stuff going on I have developed O.I (orthostatic intolerance – my blood pressure drops in to the toilet on standing), breathing difficulties which have been with me since the MG/ not MG diagnosis, bladder problems ( I get acute urinary retention on a regular basis), unable to maintain my body temperature just to name a few. This is a new and emerging area of medicine and many medics are yet to catch up on PoTS let alone Dysautonomia. Straight away please let me direct you to this website pots.uk.org so if you are currently battling to get a diagnosis you can print this guide for gp’s and take this with you at your next appointment.
The first symptom I developed was sweating heavily when sleeping, be it a nap or a proper night’s sleep. That was back in 2006 and which I now know is reactive hypoglycemia (Blog Post) from monitoring my blood glucose levels. Throughout my life I had been told I had low blood pressure (not a prerequisite for PoTS as people with all levels of blood pressure can have it), I had a lot of dizzy spells, odd cravings for salt, palpitations. I put my palpitations down to anxiety, as I had always been quite an anxious person. However once my anxiety issues had been dealt with and I learned how to combat them I continued to be left with a feeling of my heart wanting to beat out of my throat on random occasions.I would also on a regular basis get very lightheaded when changing from a sitting to standing position.
So many patients with PoTS are misdiagnosed as having anxiety, health anxiety or depression or other mental health labels before they eventually get diagnosed correctly that it is criminal. Unfortunately once you have had the mental health label attached by the medics it is a hard one to shake off. Even now when going into hospital as an emergency, I still get somatiform disorder brought up when it has been completely and utterly disproven. The problem is that to an uninformed doctor PoTS can sound very like anxiety, racing heart rate, tremors the feeling of adrenaline coursing through your body and an exaggerated flight or fight response. With the majority of PoTS patients also being women it can be even harder to be taken seriously. It seems the modern medical profession still believe in the condition hysteria.
By the time I discovered the little known condition of PoTS, like many I had been written off by the medical profession as overly anxious, internet searching for syndromes with probable somatiform disorder. It took me over a year of battling to finally get the test that would prove beyond all reasonable doubt I had PoTS. A medical condition at the time my old gp had told me didn’t exist. For more info on my experience of the Tilt Table Test please click Here as I don’t want to bore you by repeating myself.
My main symptoms at the time of diagnosis were as follows
- feeling faint or fainting (aka pre-syncope and syncope. Please remember only about 30% of PoTS patients faint but many feel faint)
- feeling like an elephant was sat on my chest and not being able to breathe properly
- racing heart rate every time I changed position, even rolling over in bed.
- greying out, especially after eating. (My peripheral vision greys out)
- Insomnia (BIG TIME)
- Migraines and shockingly bad almost migraines
- Cognitive deficit (aka brain fog /aphasia/ short term/long term memory problems)
- Chest pain (too many times to mention I thought I was going to have a heart attack)
- Reduced sweating (some people start getting excessive sweating, I only get excessive sweating at night)
Again I have been absent for quite a while. Unfortunately my health is on the slide and I have basically hardly been out of bed either through pain or through pre-syncope episodes. (pre-syncope medical term for starting to faint or feeling faint and not actually fainting).
After a great deal of discussion hubs and I have decided that its time for me to contact the hospital Pots Dr as things aren’t getting any better and are in fact much worse than they have been for a long time. What he will actually be able to do is debatable but I can’t manage like this. Even standing for a minute or so is sending me into the spins. When I have been standing I am walking around like a drunk as I am so dizzy. I don’t know whether the chest infection has sparked this off or its just one of those things.
Even sitting here typing is making my head feel very strange, it feels like its moving to the left! How bizarre.
On top of all this I am also suffering with a bad HS flare which has been extremely painful. I currently have two abscesses on the go. One is actually healing so is less painful but I developed a new one yesterday and the process of sitting down is making me scream out loud! I can’t wait for it to pop to get some relief. It sounds disgusting and it is, but the relief when they pop is unbelievable.
Most of my days lately have been spent in bed watching DVD box sets or listening to the radio. I listen to the radio once my vision starts to become double. It can be frustrating but I try and rise above it.
A friend asked me how do you manage to keep yourself in good spirits, to be honest I have no idea. At the moment I am angry and just feel like I can’t let this beat me. I haven’t had any why me days in the approx six week period when this downward spiral started. I am luckier than most people, I don’t have kids so I don’t have to force myself to get up and do things to look after them. I don’t have the worry about working as I haven’t worked since 2008 and to this day I can’t work out how I managed to keep going for so long with virtually zero support from the company. I can just be me and if it means being in bed all day so be it. I also have fantastic friends that text, visit or call which keeps me sane.
Over the last 6 weeks I have neglected my Internet friends for which I am sorry but I am hoping you will understand.
Peace and love xx