Thursday, 28 April 2016

Too close for comfort

I have been a massive fan of the BBC Radio 4’s The Archers for years. The radio is what has got me through the last few weeks as many days I find the only way I can cope with the head pain caused by my suspected CSF leak is to lie in a darkened room and hope that a few hours supine will relieve the pain.

The story of late (if you are abroad or haven’t read the numerous newspaper articles) has been one of domestic violence mainly the psychological controlling kind. The storyline to hit this soap / drama has divided fans of the show due to the fact that this is normally about farming life in a sleepy village. Nothing like this has been portrayed in this soap. Some fans have complained that the story line has dragged on for far too long. However I would argue with them that this storyline has ended far too quickly as many who suffer from this type of abuse are victims for years before they finally break free.

Most break free in a far less dramatic way than Helen Titchener, who stabbed her abusive spouse Rob, when he threatened violence against her 5-year-old son Henry, after she told him that she was leaving. This part of the storyline is scarily accurate as victims are in far more danger when they try to end the relationship or get away. Many have to go into hiding due to the escalation of the threats against them.

The storyline has been dramatic, tense and far too realistic for my liking. I have previously written about a psychologically abusive relationship I escaped in my youth. This current storyline has had it all flood back, Rob’s tone of voice, the words he uses and the actions he has taken over the last 12 months or so have caused me to be filled with anxiety. Before the big climax of Helen stabbing Rob I only had to hear Rob’s voice and I began to feel sick. I have never felt so scared by a drama on the radio as this has made me. No drama I have watched or listened to has affected me in this way.

I have been in two minds as to whether or not to continue to listen as it has caused flashbacks and the fear I felt all those years ago sits as a massive knot in my stomach as I have listened. Some evenings after the show has finished (it airs at 7pm and finishes at 7:15pm) I have lain awake shaking with fear for several hours afterwards. Not great for someone who suffers with tachycardia at the slightest provocation.

I know that I have escaped my abuser, I was lucky after 11 months I woke up, mainly because he had moved across the country it forced a natural end to the relationship. Despite that he wouldn’t let me go and wouldn’t accept that I had ended it. I was initially bombarded with flowers and gifts. When I told the florist I would no longer accept them I then received abusive letters. It speaks to the cowardice of the man that he wouldn’t pick up the phone and try to speak to me, it was the days long before caller I.D. I was scared to answer the phone for months afterwards in case it was him at the end of the line, maybe that was his plan.

Like the character in The Archers Helen Titchener, by the time the relationship ended this man had destroyed any self belief I had previously had. For months afterwards I never truly felt free of him and it took many years to rebuild my self-confidence that he had eroded over that short space of time. Whilst the storyline was unfolding on The Archers quite regularly I would end up shouting at the radio “Helen for god sake leave him”. It is easy when you are on the outside of the situation to sit in judgement. When you are in the eye on the storm you are so busy walking on eggshells, trying to ensure you are good enough that you just can’t see what is happening.

No one choses to be in a relationship with an abusive partner, if we knew what we know by the end of the relationship at the start of it, we wouldn’t touch them with a barge pole. All too often people are victim shamed for “allowing” themselves to be treated in this way. The victims or survivors as I prefer to call myself carry a lot of guilt. Even as I am writing this, thoughts have gone through my mind blaming myself for his behaviour, why was I so naive? Why did I allow myself to be manipulated? Why couldn’t I see his abusive behaviour? It is odd because I have nothing but sympathy towards Helen and do not blame her for the way that Rob has behaved.

Unfortunately domestic violence / abuse is far more common than we would like to believe. It happens in all types of relationships, it can happen to both males and females. I have friends who have survived these types of relationships however because psychological or controlling or coercive behaviour  is such a new concept in the realms of domestic violence / abuse, many people don’t even recognise that they have been a victim of it. Just because the perpetrator never used violence against you doesn’t make you less of a victim. A close friend of mine still refuses to admit she was a victim despite ample evidence to the contrary. Another friend repeatedly blames herself for being the victim of domestic violence on more than one occasion. She can not see that she has done nothing wrong it was her partners that perpetrated the violence and psychological control. As a fellow survivor I know the guilt she feels, it is almost as if we think we share the same personality flaw for “allowing” ourselves to be taken in by these people. Perpetrators of this kind of domestic abuse seem to like targeting strong minded independent women so that they can reduce these women to nothing. To them it is a kind of sport and when the game is up they move on to their next victim.

Both my friend and I would say we were good judges of character but when you have made such a fundamental error of judgement (how it feels not what actually happened) it can shake you to the core. It can make you reevaluate all your relationships and view prospective partners with deep suspicion. It leaves you feeling that you aren’t good enough because let’s face it, it is all you have been told for the duration of the relationship. As a survivor you can feel a great deal of shame, that you have let others around you down for your poor choice in partner. For many years I wouldn’t admit what had happened during that 11 month relationship. It’s only in the last three years I have been able to tell people about it. Some have met this “confession” with disbelief, some with silence and some have come forward with their own stories of abuse.

People who haven’t experienced it may find it hard to believe that others would “put up” with that kind of treatment. The pace of the storyline on The Archers has been spot on, abusers don’t start off revealing their sadistic sides, it is a slow descent into complete and utter control. It starts with the odd comment, which at the time you let go because they’ve never said anything like it before. Then those unfounded criticism become more frequent, often said to be “just a joke” when you confront them. So you start thinking perhaps I am being oversensitive? But the criticisms sting and you start to think there maybe a grain of truth in them. Then the abuser starts questioning your friendships / relationships and make things difficult if you want to spend any time with people other than them. So you stop seeing others or change the way you view the relationship as it's easier than dealing with their sudden explosive outbursts.

Before you know it you've become a totally different person, whose anxiety levels are through the roof. Nothing you do seems to please them and you've got nowhere to turn because of the way you have behaved towards those you once held dear. Now everyday is spent walking on eggshells never knowing what will provoke an explosion of anger. There is no violence involved but the way they explode means you fear it. The fear is enough to keep you there, after all it’s your fault they are angry.

Some will never understand how people stay with abusive partners. I was brought up to believe that domestic abuse / violence was exactly that violent. When you have been brought up with that belief it can be very difficult to accept that abuse doesn’t always mean violence but it can mean psychological control, which unfortunately is very difficult to prove in the legal sense. There is no evidence as there are no bruises, no trips to the hospital or the gp. Perpetrators of this kind of abuse are very careful of their public image. They may take on the role of protector / carer or the perfect partner in front of others. They may reserve their comments until you are behind closed doors or a look in public may be enough to reduce you to a quivering wreck.

As a society we have to get away from the belief that the victim in this kind of abuse is somehow complicit. It seems fictional characters deserve our sympathy, our friends and family members can be judged harshly. With the belief that “they should have got out”, “How could they not see it?” “Why didn’t they say something?” “Why didn’t they ask for help?” And so the victim starts to believe that they must be in some way to blame for what happened to them.

I thought I had dealt with what happened to me, that I would never feel the anxiety and fear again until this storyline, it has been far too close for comfort. So although The Archers current storyline has been uncomfortable listening for me it has opened up a conversation about psychological domestic abuse. Which has to be a good thing even if it means I am dealing with emotions that I thought I had buried more than 20 years ago.

* * * * * *

Just a quick update.

My head has improved slightly in that I can sit up for longer before the headache kicks in however the salt tablets are causing fluid retention especially around my ankles.

I have now been referred for an epidural blood patch but how long that will take to come through I have no idea. So it is just a waiting game and learning to deal with the symptoms and be more proactive in their prevention.

Thursday, 21 April 2016


So I find myself in much the same position as I was last week. I am still having the orthostatic headaches, neck pain, back pain and the constant taste of salt in my mouth. Just for added variety I came down with a UTI last week which knocked me for six and I have been sleeping a lot ever since.

My gp has increased my salt tablets (600mgs) to 10 a day and this has helped a little. Meaning I can spread longer periods sat up than before but everyday I have a headache that increases as the day goes on.

Thankfully hubby had an appointment with the gp this morning (we share the same one),  he explained how awful the last few weeks have been for me and how this is impacting his anxiety. He doesn’t know how I am when he is working and he is worried that I may collapse again, injuring myself. The gp has now decided that I need the referral and that is being done this week. I have to contact the gp on Friday to let him know how things are going.

So that is the current state of play, I am still in limbo and have no idea how long I will have to wait to get the epidural blood patch or if indeed the consultant will agree to it.

Thursday, 14 April 2016

Same sh*t, different day

It currently feels like I am stuck in a vicious cycle. I lie down I feel ok, so that makes me feel like a fraud. I get up within 30-60 minutes the pain starts and I end up lying back down again. It takes several hours of lying down for the pain to subside, the longer I lie down the better I feel and the more my lower back hates me.

I have managed to go out for a trip in the car for 30 minutes as I was starting to go stir crazy. Again this makes me feel like a fraud, as there are many people locally that read this blog and probably don’t understand what is going on with me, they can be very quick to judge unfortunately.

I have tried to explain to people what is going on but it is complicated for the layman to understand and I appreciate that. Many people won’t admit when you try to explain it that they have no clue what CSF is, so the explanation is immediately lost on them. Also people assume that this will get better by itself, there is a remote possibility that this could happen but it would take at least 8 weeks of complete bed rest for this to happen. The way my head / neck feel I don’t know if I could cope with 8 weeks of bed rest, plus my lower back would never put up with it.

I know people mean well, when they say “get well soon”, they really want it to happen, I want it to happen. However I feel like I am trapped in medical limbo whilst people who have no clue decide what is the best way forward. Whilst I am waiting and there is no change in my condition I feel I am supposed to just shut up and put up. I don’t want to be accused of moaning about it.

There are those who also like to minimise what you are going through, I have had this before when I first got sick in 2007, when someone helpfully told me “at least it’s not terminal”. As if because I wasn’t dying I wasn’t allowed to be ill or in pain. I was told by one person that they too “had a headache”, whilst headaches can be terrible things and very debilitating a headache is not a migraine and a migraine is not a low pressure headache. Anyone who has suffered a low pressure headache after a lumbar puncture or a CSF leak will tell you there is no pain like it. In 2009 (I checked my medical records as I was curious as to when I had my LP) I can remember lying flat in bed and starting to cry. Jay asked me what was wrong and I told him I was crying because I needed a wee. The thought of getting up and my head feeling like it was going to explode was enough to make me start crying. I will always remember the pain I was in it was agony and no pain relief touched it.

For the last 10 days I have been taking 8 salt tablets a day in the hope the extra salt will stimulate the production of CSF. It has had no effect other than to make me put on a couple of pounds in fluid retention and increase my already excessive thirst. I am ringing my gp today (Weds) and letting him know that it has made no difference. I have ordered myself an abdominal binder to see if this helps at all. I joined a CSF Leak group on Facebook and some of the members had, had good results with a binder. However it is dependent on where the leak is.

One weird thing I have noticed is that when the pain is bad my right eye seems to tear up constantly. I will be honest and say I am clueless as to what is causing this. Also before the pain really gets bad, I get a continual taste of salt / yuckiness. It is not enough to cough up or a feeling of a drip or something running down my throat it just seems to hit the back right hand side of my tongue. It really is grim and the only way to get rid of it is to continually eat or drink.

So that is the state of play at the moment, I am no further forward, things are just the same. “Same Sh*t, different day”.

Thursday, 7 April 2016

Never a dull moment

Last week I failed to produce a blog post as I had been completely wiped out due to a vomiting bug. That wasn’t the whole story but at the time I didn’t have the energy to explain further and I start to feel like my life is an episode from a medical drama. I wonder if people actually believe what I write or think that I just make all this shit up?

I have to say years ago if someone had told me all this medical bad luck would descend on one person, it would have received a raised eyebrow and a wry smile, with klaxons sounding warning of an attention seeker. It is amazing how your attitudes towards chronic illness and medical problems can change when it is all happening to you.

I wrote in my blog post “Excuse me whilst I sob quietly in the corner” Click Here. about how bad my head and neck pain was, it took a turn for the worse last Thursday. I had woken up at 3am and the minute I sat upright the throbbing in the base of my skull and in my forehead started. I knew within seconds of sitting up I was in for a crap day. I could have never of imagined how crap. As hubby was up he helped me downstairs, whilst he took care of the dogs, I sat clutching my forehead not able to fully comprehend how bloody awful the pain was becoming. Normally hubby and I would sit and catch up on some TV together after he had walked the dogs at silly o’clock in the morning. That morning though I went back to bed in the hope that relaxing and having some more sleep would stop the head pain. I took some oramorph and went back to sleep.

My plan of waking up pain-free didn’t work, whilst lying flat I was relatively pain-free but on becoming upright my head began to feel like I it was going to explode. With every beat of my heart the pain pulsed through my head. I did what I always do and tried to ignore it and soldier on. I didn’t want  Jay to realise how bad things were as he was going to work and wouldn’t be home for a while. I don’t like sending him off to work stressed and my plan was as soon as he left for work I would crawl back to bed. I held it together for an hour, the whole time the pain was increasing. Every time I sat up or tried to stand the pain escalated to the point that without thinking I was holding my head in my hands.

By the time he left I couldn’t make it upstairs, so I lay on the sofa hoping that the pain in my head would subside. Stranded for several hours on the sofa my head did indeed lessen up a bit, so I decided to try to get up to bed. On standing my legs turned to jelly and the pain came back like I had been hit on the head with a shovel. Such was the intensity of the pain that my legs gave way and I hit the deck. Hubby had been in work 2 hours and now I was having to call him home. Something I am always loath to do unless it is a dire emergency. Thankfully he had the good sense to ring our doctors surgery and request a home visit before he had left the building. I rang my parents to explain to them that I thought I may need to be in hospital, something was terribly wrong and if I did go in could they come up.

Within an hour my own gp had rung me to find out what was happening concerned that it maybe meningitis. Although I was hot I didn’t have a temperature so meningitis was ruled out and he informed me he would be out to see me at lunch time. The rest of the morning up until his visit is a bit of a blur. I spent it sleeping, lying flat was the only way I could reduce the head and neck pain enough to make it bearable.

The next few hours before my gp arrived are a bit of a blur, I slept a lot. My head pounded every time I tried to lift my head from the pillow. I tried lying completely flat without a pillow but it made no difference. Lying down stopped the pain throbbing around my head with every beat of my heart, so it took the edge off a bit.

The gp arrived at around 2:30pm and due to lying flat the pain had eased considerably so I felt a bit of a fraud having a home visit. Despite the fact that I still couldn’t sit up without pain. I have no idea what PoTs was doing because on sitting up the pain in my head and neck was all-consuming.

We chatted about the pain, I was still convinced at this point that the pain was coming from a herniated disc, even though I was still comparing the pain to the post lumbar puncture headache I suffered in either 2009 or 2010. My gp took some bloods which was incredibly brave of him as everyone at the practice knows how bloody awful my veins are. He was under even more pressure as he only had one needle with him. Despite of all the pain he still managed to make me laugh, when he couldn’t find his tourniquet. The conversation went like this
GP “ I can’t find my tourniquet”
Me “ would a pair of tights do?”
GP “ I am not wearing any today”
At this point I was gasping for breath because I was laughing so hard. I replied
“I forgot it’s not dress down Friday”
Now both of us were giggling like a couple of idiots.

My gp got the blood first time mainly because he listened to me when I told him to avoid the crook of my arm and go for the back of the hand. The blood tests were to check my sodium levels. I drink litres and litres a day, around 7 or 8 a day as since I was born I have suffered with excessive thirst (polydipsia). I am on slow release sodium tablets 6 a day, plus the salt I add-on my food. Low sodium could be causing me to have low CSF pressure. Due to the headache my gp was convinced it was down to my CSF pressure, the give away was the fact that the pain was increasing on sitting and standing.

My gp wouldn’t be drawn on what was causing my low CSF pressure on Thursday but when I had to get my blood test results on Monday, he told me that he had been in contact with my consultant and they both believed that I was suffering from a CSF leak. I have to increase my salt tablets to 8 a day, there was a suggestion to increase my fluids but when I reminded my gp of my excessive fluid consumption, we both decided that it wasn’t necessary. He then informed me that should this not improve things in the next few days the next step would be an epidural blood patch. More information on Epidural Blood Patches can be found here

It has taken me days to get over Thursday, I am still struggling with sitting up for more than two hours, I am spending the majority of my time either in bed or lying down on the sofa. It is the only way to prevent the pain from over taking me as it can’t be controlled with painkillers. Nothing stops or reduces the pain. I am utterly exhausted all the time.

My mood on Friday was low as I just felt “what the fuck else is going to be thrown at me?” It all felt too much, I am ok now it was just an understandable wobble. It is no wonder I have been feeling so ill since the end of January when these symptoms first came on.

For more information on CSF leaks please Click here.  

I am also celebrating this week as this marks my 300th Blog Post!