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 https://en.wikipedia.org/wiki/Epidural_blood_patch.

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!

The not so glamorous side of chronic illness part two

I had to leave some distance between my appointment with the specialist nurse at the Bladder and Bowel clinic, so that I could gain some perspective on it. All that has done has made me more annoyed, which be explained in more detail as you read this post.

The clinic was held at the local hospital, so no long trek into the city with a full bladder. It wasn't until 45 minutes before the appointment that I remembered that a full bladder was a prerequisite. I downed two cups of tea and a 250ml bottle of diet coke to ensure the job was done well. I then squealed as we went over every bump in the road as I was busting to spend a penny.

I was seen right away and ushered into a room with an examining table a few chairs and a desk. The nurse introduced herself and seemed on first appearances quite reasonable, if a little wet. I was trying my best not to come across as hostile, I have built up this defence mechanism over the years as it leads to less disappointment. I handed over my questionnaire that I had been asked to complete prior to coming including the results from operation "measure my piss". I had fully expected that my bladder would be scanned on arriving then I would be allowed to relieve myself and be scanned again but no this didn't happen for what seemed like an eternity. We went through my questionnaire until in the end I had to tell her I was about to wet myself. She seemed surprised, which alarmed me because after all this was her job to look after people with bladder problems, who had come to the clinic with a full bladder as the letter had informed them they had to do.

I was handed a diamond-shaped cardboard dish and told to produce a sample and come back. I managed to fill the receptacle with ease however as normal the flow of urine stopped. I could have strained, changed position as I would normally at home but I decided this was pointless if they were going to scan my bladder to see if there was any residual urine. When I returned she scanned my bladder - roughly pressing down much too firmly for my liking, to the point where I was concerned that I would wet myself. She turned at this point from someone who had been reasonably pleasant to someone whose feathers had been ruffled. She snappily announced that I had 350ml left in my bladder although the scan couldn't be as accurate once the amount passed 250ml. She made me feel like I had done something wrong by proving I did indeed have issues with my bladder.

The next thing on her hit list was the amount of fluids I consume. This was all done under the guise of it would be knocking out my electrolytes. Had she bothered to read my notes at all or have read my prescription list she would have seen I take salt tablets and Fludrocortisone. Again I felt like I had to defend myself, explaining one of the main symptoms of Dysautonomia is excessive thirst and I had drunk like this all my life. 

During the preamble before I had been allowed to empty my bladder she had informed my husband and I, that her husband had Postural Orthostatic Tachycardia Syndrome - like it was a badge of honour. She also told she had been diagnosed with Chronic Fatigue Syndrome, although I am left wondering to this day what relevance this had to my own issues. It's not that I wanted to be star of the show but when you attend a medical appointment you expect to be discussing your own issues not that of the medical professional and their spouse.

During the appointment I found out that her husband and I shared a hospital consultant. Her husband had been given the advice to drink 3-4 litres a day. She announced quite proudly that he was on 3 salt tablets - a day. Again I didn't understand where the competition element was coming from and explained that I was on 6-8 salt tablets a day and that the consultant had never set a limit on how much I could or couldn't drink. She couldn't get her head around the fact I didn't solely have PoTs anymore, my condition had worsened. She never really let me explain about my condition as she was too busy interrupting me to tell me about her husbands awful fatigue and chest pain on exertion. It's almost as if she couldn't see me sat in my wheelchair slumping further and further down as I could no longer hold myself up. I came away thinking I am sure this was my appointment where I was supposed to talk about my issues.

When she had informed us that her husband had PoTs both my husband and I were relieved that we wouldn't have to explain everything as we assumed that she would have done some research into the condition. How wrong we were, this was worse than having an appointment with a medical professional with no clue. It became clear that when I rattled off a couple of well-known websites for those with PoTs or Dysautonomia she had never heard of them. She was clueless and could only go on her husbands symptoms which with it being a syndrome and the fact that mine own condition had progressed past that of PoTs were largely ignored. I had described my condition on the questionnaire as Severe Autonomic Dysfunction, she understood what the autonomic nervous system was but couldn't get to grips with how the disorder affected me. Perhaps if she had listened she might have done. She admitted she had heard of Ehlers Danlos syndrome but had no knowledge of it, despite her happily telling me I was the third person on her books with the disorder. Maybe I am being a little hard on her but if I was a nurse looking after three people with the same condition, I would have done a little research about it so I would be more able to understand the challenges those patients face. 

I was becoming irked by her lack of knowledge and the constant comparison between myself and her husband. I felt by the end of the appointment if I heard one more mention of her husbands fatigue I may swing for her. She has no clue that on returning home from the appointment - the first time I have been properly out of the house since the 19th December, I went straight to bed such were the levels of my fatigue. Her opening line in the appointment when going through all my medical issues had wound me up - "Oh it's not much of a life for you" said in such a way that it was assumed that I had a choice in the matter. I responded with "life is what you make it" because I believe that to be true. I live for the good days and manage the shit in between. Maybe I am being too harsh on her maybe she was trying to be empathetic and compassionate. It wasn't doing anything other than rubbing me up the wrong way and I had to play nice as she was the gateway to me receiving additional treatment.

Have you ever been made to feel guilty about drinking 250 ml of diet coke a day? I have, the way she banged on and on about my diet coke habit you'd think I was drinking 25 litres a day not 250ml. She just wouldn't let it drop I was quite amazed at how she let rip. Then next came my tea consumption, now I admit I drink quite a bit of tea 8-10 cups a day but as I am awake from 3.30am most days I don't really think its excessive. Just to shut her up I told a lie and said that they were decaffeinated, all she did was go back to attacking the diet coke again. I couldn't win with her, it was kind of  "mother knows best" vibe I was getting from her. My husband and I have now labelled diet coke as "the devils juice" and laugh hysterically every time I drink it.

It was obvious that she has the same line of patter for each appointment, that caffeine is the work of Beelzebub, along with fizzy drinks and artificial sweetener, all three of which I consume. I was made to feel again that I had brought my bladder problems on myself. My chart was showing her I had an overactive bladder as I was passing less than 250ml on occasion and going 3 or 4 times in an hour. Overactive bladders are caused by a variety of reasons. Some people ( note not all people ) do find relief when they avoid or reduce their caffeine, fizzy drink and artificial sweetener consumption. I was told that I must stop these immediately. I also had to retrain my bladder so I needed to ignore the messages of needing to urinate and try to increase the length of time I hold on. I also needed to start doing pelvic floor exercises at least 4 times a day.

I did manage to squeeze into the conversation that a close relative of mine has Fowler's syndrome and has ended up with a sacral nerve stimulator. The nurse again was a bit prickly informing me that if I had that then catheters wouldn't work on me. I pointed out to her that whenever I have been catheterised nothing passes into the bag. I have to take copious amounts of buscopan to relax the valve on my bladder, walk about, drink, cough etc all in all it can take anywhere from 10-40 minutes before my bladder valve will relax enough to let the catheter work. I almost ended up in surgery in June 2014 when my bladder failed to drain for nearly an hour. It really annoyed me that she seemed to dislike me for having more knowledge than her. I guess she wanted someone who would just let her witter on and not interrupt or challenge her.

However she did concede eventually that there was something neurological going on with my bladder due to the acute urinary retention I keep getting. I have been referred to the hospital for urodynamic testing - which maybe a problem as I am allergic to the dye they place in your bladder, I did mention in my questionnaire I was allergic to it. I am also supposed to be being taught at home how to self catheterise so that I can empty my bladder fully before going to sleep and any time that I feel it hasn't emptied completely. Most days then. I can look forward to having to see her again after being taught how to self catheterise as she will scan my bladder to ensure that I am doing it properly. I am looking forward to being treated like a naughty school girl again no end.

The funniest part of the appointment was when she told my husband if it was easier for me he could learn how to insert the catheter for me. Both of us recoiled immediately. Why on earth would I want him doing that? I can't think of anything I would like less! He can't even be in the same room as me when I am injecting my medication. How on earth would he manage to do it without passing out? A firm "No thank you" was uttered by him and seconded by me. He then added "We like to keep our hobbies separate". I could tell when he said this he had reached the end of his tether with her also. He went back to playing Angry Birds on his phone. 

During the appointment because it was about stuff that makes hubby feel sick (and who can blame him), he kept his concentration focused on playing Angry Birds so he could block out what was said. Unfortunately the nurse didn't seem to understand he wanted very limited participation in the appointment and kept trying to engage him in conversation. He really wasn't being rude, he is very supportive of me, he just isn't so great in a medical setting which is absolutely fine as I can advocate for myself.

There is one thing that keeps going around in my head that really annoyed me (and yes there were some parts that didn't) which was when I jokingly mentioned that one time when measuring my urine the jug had overflowed making the measurement way past 700ml, she immediately snapped back without a moment's hesitation "well I have passed 750ml". I just thought, Jesus you must be an absolute barrel of laughs to live with. Not only had I been entered into competition with her husband, I was now in a real pissing contest with her. What the hell was going on here?

I will be completely honest I have not ditched the devil drinks, why? Because I only get an overactive bladder on the days leading up to urinary retention. I have however started holding on longer rather than going the moment I feel the need to go, which at the moment is working fine. I had got myself into the habit of going frequently because in the past I have found holding on leads to me contracting UTI's or having bladder spasm or finding that I am unable to urinate properly. If I find the new regime on holding on leads to UTI's I will go back to not holding on. Had she given me the time to explain any of this maybe her advice would have been different. 

It was disappointing that the session was dominated by her and her husbands own health issues, not my own. I would have liked the opportunity to properly explain and discuss what was going on with my bladder and bowel. I wasn't given that opportunity. It is a shame that the skill of listening to the patient wasn't employed during this appointment.

Looking back on it now I consider it one of the weirdest and most surreal appointments I have ever attended. Should I have been in the position where I would never had to see her again, I would have happily written a complaint about her. My hands are tied at the moment with her being the one to refer me and organise me being taught how to catheterise myself.

UTI - Urinary Tract Infections
PoTs - Postural Orthostatic Tachycardia Syndrome

A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

I know now that it wasn't hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn't picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn't hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

This insecurity about my weight has followed me all through my life. I have been influenced by the media images throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like "oops I forgot to eat today". Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don't eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

By my early twenties I had developed a little known eating disorder called "binge eating". With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn't make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven't been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn't a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be "good" when he brings all the "naughties" into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn't stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don't fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can't control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what's going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven't done because I didn't look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.