I’m Fine

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.

Blind Panic

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?